This is what my niece took and finally weaned off of. I haven’t finished the video, but she noticed carbonated drinks tasted terrible. I was hoping she would stay away from them, but she’s drinking them again😢. It just makes me so upset with the medical community that your symptoms were dismissed for so long. With your education and how hard you have always worked to get better, you weren’t taken seriously. Education is a privilege and it makes me so sad when healthcare practitioners are so judgmental and even discriminate against those who don’t have the ability to fight. Everyone is important and should be treated respectfully.
I have that problem, Dr's dismiss all my problems so I eventually had to buy my own meds (exactly what I should have been prescribed for my diagnosis, like my Dr's will diagnose my problems but never bother helping) so now they label me as a druggie so are further refusing my meds! If they'd given me the meds to begin with I wouldn't have had to buy them :( Absolute joke, now I'm being told to simply do breathing exercises to deal with all my problems! 🤣🤣🤣
I was just diagnosed with IIH last week, my opening pressure was 31, and I was put on diamox... I also noticed sodas tasting weird! I actually swapped mine out just yesterday and told my son to pour it out because I thought something was wrong with it.
Watching this was, woah. I have had IIH for 3 years now and I have never had anybody to talk to about it. When you mentioned your feet and hands tingling and the bottom text said when you bend legs, I cried. That is the bane of my existence. Six months ago I developed constant tinnitus and I am hoping with everything I am that it is from the Diamox. My opening pressure was 40, and last week my 3rd LP showed it was 22. So I am currently lowering my dose of Diamox and in two weeks, I will be off of it completely. Thank you for posting your story.
Hi Jen. I came across your channel last night and I can’t believe how much I can relate. I was diagnosed with IIH about a year ago. I was taking so much medications including Diamox. I was taking 1,000mg every 6 hrs because my pressure was too high. I went through several lumbar punctures, it was scary. I lost my vision completely before I was diagnosed. I kept going to so many ERs and they kept telling me I had migraines when I didn’t even know how those felt because I never had them. After I was actually diagnosed and treated, I slowly started getting my vision back. I still haven’t recovered 100%. But every time I have a neuro-ophthalmology check up they say it’s slightly better. My vision loss right now is 20/500.
Hi!!! I am so glad to have found your channel. It's as if I am watching my life story as you tell yours. TEN YEARS of dismissive drs, traveling the country for specialists, no answers, constant pain, not being believed- only to find out in November of 2021 that I indeed have IIH as well as a sphenoid sinus cranial leak and Eagle Syndrome. Surgery is scheduled for September of this year. I would truly love connecting with you to bounce stories off of each other and offer advice along the way! Hope this message finds you on a good pain day
All of my (limited - ha!) memories of being on Topiramate just came flooding back! 😬😂 In all seriousness though, it’s great to see where you’re at with your health. If surgery is in the future, we’ll be here supporting and encouraging you!
Topiramate is evil, I've had three people in my close family take it... it did more harm that good for all of them. Hope research is done in the near future to come up with something either than Topiramate
Good job. I’ve been on diamox 8 years. Dosage is 625 mg/day. 125 during the day and 500 at night…. This is give or take. And yes, I have kidney stones… no fun at all but I watch them, and drink a ton of water. No coffee, caffeine, low in carbs, sugar and stress… all triggers and oh yes…. No salt or as little as possible. I read every label carefully. Hope your journey is going well… it is a tough road.
Hi Jen, in general I really enjoy your videos! I just want to caution about the 'acidifying / alkalizing' your body subject. I'm sure you as a biochemist have done your research about the medication it's effect etc. and are aware of the very narrow room of the blood pH that causes life threatening issues very quickly if altered. However, there is a lot of talk about trendy shakes/ nutrition and stuff about that subject from people who don't know what they're talking about what so ever. I hope you get where I'm coming from. Maybe put a little disclaimer in there or something 😅 Wishing you the best
I get where you're coming from, but the blood is highly buffered and the things I suggested (fruits, veggies, balanced electrolytes, etc + avoiding sugary, highly processed foods) are not life-threatening. I always put disclaimers where I feel they are necessary, and mark my videos as "not for kids" just in case 💜
@@MommingwithMigraine oh no, I realize, that none of the things you suggested would do any harm for exactly that reason. I didn't mean a disclaimer in the don't try it sense. I just thought you would mention the blood being highly buffered etc and that that isn't something that is usually necessary to do. I probably didn't express myself very well, I don't usually talk about such topics in english
I really wish so bad I could tolerate that med. It made me so ill. I thought I was slowly leaving this world. I called and they tested my blood and I was one of the rare ones that got really sick.
Lots of great information! So glad this is working for you, hope it lasts long enough for you to find a permanent solution. 😊 Sounds like you're well on your way.
Thank you! I'm doing alright for now... it could go anywhere from here. We'll see. But I sure am thankful for this medication for what it's done so far.
My daily diamox dose is 2 grams. I take 1 gram of extended release in the morning and 1 gram at night. I also take Klor-Con M20 twice a day because of my NCS/POTS to keep potassium up with all the fluid loss. I didn’t have the constant migraines, only sinus pressure headaches that I thought was allergies. I wasn’t diagnosed with IIH until I was almost blind and I now have some permanent vision loss. I was diagnosed through MRI and lumbar puncture. My opening pressure was 48.5. They removed enough fluid at that point to get me down to 31. Still high but oh my goodness.
Hey Jen the last time I commented I was binging your videos becuase I was in the hospital. I was their inpatient for testing. Of witch it was found I am not epileptic like I was told. At the time that left the question of why I was haveing sezuire like episodes. Scince than they have stoped and we have a theory as to what was cuaseing it. However their are still meny mysteries about my pots and other conditions. As such I'm curently inclined to look into possible underlying cuases of pots. As well as looking for information on new neurologists near me. Even looking into pots care on, witch I don't think I'd be able to do after looking into it. But watching your videos so far have ben helpfull in information I can take and then run with and look into myslef. This is one I find rilly informative so thank you.
Hi Jen, I was diagnosed from a lumbar puncture and it would have been necessary for the diagnosis even if it hadn't been my choice (I usually heal quickly) after the first lumbar puncture diagnosis confirmed and I started diamox. My current prescription is 1000mg twice daily. For me the diamox did normalize my pressure but it never helped with my symptoms only the lumbar punctures did so I got 3 done to date (this started December 2021). I developed a leak from the third lumbar puncture which has now been patched. My neurosurgeon is confident that the best path forward for me (no stenosis in the veins and small ventricles) is a LP shunt and I am cautiously optimistic about my future
I am waaay older than average for IIH. I was recently on 4g/day of Diamox and tolerated it well until all of a sudden it made me so very miserable, and it wasn’t improving my optic nerves or over all condition. Had a therapeutic lumbar puncture and was at 37 opening pressure. Had a second puncture three weeks later and was at 34. Having another tomorrow (3 weeks later). I was deemed “refractory” to drug treatment but am currently on Topamax, it isn’t helping but I have to do something. Optic nerve swelling is worsening. It jumped from grade 1 papilledema to grade 3 in the last month. All this is happening while counting the days to get to Mayo Clinic to see if I have venous sinus stenosis. If I’m a candidate for a stent, I’ll do that over a shunt any day of the week. Too many risks with the modern shunts for my liking and really good results with the stents addressing the actual problem with IIH. I’m from an area that offers nearly nothing in the way of neurologists that have a clue in regards to IIH. I was first diagnosed in the early 1990’s, had a simple LP shunt (basically gravity fed, no programmable valve) placed and it worked like a champ for 29 years until my appendix ruptured this year and the shunt had to be rerouted out of the abdominal cavity to avoid possible contamination. In that process, they destroyed the drain and then claimed they could not get in a suitable LP shunt. In the end, they removed it entirely after claiming I no longer needed it. They were entirely wrong.
My sister is in remission from IIH. She had an extremely fast onset which she thinks helped get her diagnosed faster. Her eye doctor caught it early and she had an amazing neurologist who treated her aggressively and was up to date with the most current research. It became clear pretty quickly that the normal dosage of diamox was not working for her, so her doctor put her on a extremely high does. There is some fairly new research out that shows that starting with a high dose and weaning off is very effective. He gave her a print out of the study to give the pharmacist because he said the study was so new that the pharmacist might think it was a mistake. She also switched from the multiple doses a day to a slow release dose. That help some of the side effects, and she only had to take once a day. She took that giant does for awhile and then was weaned off slowly. It took about 18 months to be completely weaned off, but she has now been in remission for about 8 months.
I’m the sister. 😆 That information is almost true except I was still taking the Acetazolamide 2 times a day. I went from doses every 6 hours to 2000mg every 12. while I still had awful side effects they improved a lot when I switched to extended release.
I’m on 500mg. I had a lumbar puncture and my pressure was 25. I could tell it was lower than it had been and I was lucky my headache didn’t get too much worse post procedure. I have been begging for labs but I’m constantly looked at as if I know nothing about my own body. My labs showed that I had severely low B12 (symptoms are horrible). I also had extreme tingling in my hands and feel and my feet hurt!!! I had my last eye appointment about 6 months ago but I’m starting to have significant issues with one eye-it will go dim as if it’s dark in the room when it’s not and significantly worse double vision.
As with any medication, you'll have to talk about the risks and benefits with your doctor! I highly prefer the more natural routes, so I was thrilled when my doctor at POTS Care prioritized getting me on gentler supplements and making lifestyle changes first, rather than jumping straight to being invasive and prescribing pills. Those things will hopefully sustain me in the long run, but Diamox has been great to get me back on my feet. Here's the video of my symptoms (ruclips.net/video/TK3xZQfd-mE/видео.html) and my non-prescription methods (ruclips.net/video/tc_LcLiaCJQ/видео.html). POTS Care Clinic that diagnosed me specializes in treating POTS, but also IIH, among other things. They LISTENED and changed my life 😭 got me on the road to recovery from IIH and POTS. Here are the discounts I can get you for the Clinic & for my Supplements: ○ POTSCare.com - You get $200 off your Individualized POTS treatment if you mention me when you call to book. ○ POTS Care Package - You get $50 off your Package by using my code, MOMMING My link: potscarepackage.com/partner/mommingwithmigraine/ Unboxing video: ruclips.net/video/tc_LcLiaCJQ/видео.html ○ Supplements: I take Thera pH, Parasym Plus, and NAC Max. My link: vagusnervesupport.com/?rfsn=6261617.9d93910 You get 10% OFF by using my code, MOMMING.
I am so glad ..found your channel....had all these symptoms...had been on Diamox for almost 5 years now...but now again my pressure has increased...my vision is going worse now....just want to know people are talking about Sulpha allergy as side effect of this medicine...all my doc says is reduce weight and continue with medicine..
I have just been diagnosed one month ago with iih .. i had a intracranial pressure 37 .. i am on diamox 750mg/day and feeling sick.. i can't swim , can't do any sport because i get tired quickly .
Well this is an older video but I take 2,000 per day. I’ve been on it since the end of 2021. I am glad you said it looses effectiveness with time because I feel like I’m there. Thanks for the info!
I have a few but they are not causing problems. The rest of me however is not liking the med. My bowels are crazy, usually loose, my thinking is slow, I’ve had so much trouble taking it at times I just skip it. I have decided to stop it for a while to see if things improve. I’m an RN ironically and this med is not my favorite. It’s affecting me at work which is a problem and the reason I weaned myself off of the topomax. I hope you continue to improve!
I am about to go in for a lumbar puncture in a few days to see if I have IIH but my doctor seems pretty certain I do since all my symptoms align with it. I've been considering pots for a while now though, and now I can't tell if my symptoms would be from pots or from IIH, could you possibly do a video comparing your symptoms from each, and what makes them stand out as different to you personally?
If you do need a lumbar puncture, make sure they use a non cutting needle. It reduces the side effects of the headache significantly. It's rare that I get the headache with it
With your IIH did you notice that low pressure weather systems would bother you? And when you did get migraine symptoms did it worsen when you sat down?
I been studying my IIH for 28 yrs.. no meds for it... Family an friends treated me different so I never used meds just delt with the discomfort an etc. Now I just use medical weed.. weed helps me focus an relaxing my muscles or nerves... Hi.. I'm lost an can't get the help I need.. crazy I have to jump thu hoops ..
The worst side effect for me is ringing in my ears. I started diamox last week for IIH, the only symptom I had was papilledema in my eyes. Its really frustrating to have more symptoms because of the prescription then the IIH itself.
I was on 1000mg twice a day and it was giving me such numb tingly finger tips that couldn’t even grab stuff in my purse! It made me insanely tired. Now I’m on just nightly 500mg and those symptoms are way better if not gone and it still is pretty effective in my pressure control
I was on that medicine for exactly 7 months and I know my body was not responding well and I have side effects. I literally lost 39 pounds just to get off that medication.
I've thought of this before, but I'm not sure I've suggested it. You like to change sides between segments in your videos, and I know that when you are feeling unwell, this can be overly energy intense. If that's the case, why not digitally reverse the image between segments. This way you change change sides without actually moving.
@@MommingwithMigraine Not really oddly, because if you think about it, it's understandable. People very often feel odd looking at a photograph of their own face, and research has shown that this feeling is absent if the photograph is reversed. The reason is, when you look in a mirror (the most common way you see yourself, thus the most familiar self image you have) you don't see what everyone else sees. You see your face reversed. Even without blemishes (scars, birthmarks moles) no human face is perfectly symmetrical, so even if it's too subtle to notice consciously you can tell the difference between a reversed face you know from one that is not reversed. One interesting study I saw found that the more symmetrical a human face is, the more attractive people will rate it. However, this is true only to a point. If a face is perfectly symmetrical it will be rated as slightly less attractive than a face that is only nearly perfectly symmetrical. If a face is perfectly symmetrical it looks fake.
Found you after I started a daily migraine journal (Migraine Compass) here on YT. I'm a fellow migraine and IIH patient. I was taking 500 MG of diamonds 2x per day but have since stopped as it lost its effectiveness for me
hi jen i have see some of your video my wife have also the same diagnos with you from 2019 she takes also Diamox for IIH.sometimes its compination with topiramax. I will like to ask you a very personal question if its possible to contakt you with some other way . We live in Sweden. thanks if you answer
There is one thing I am wondering about, and I understand if it's too painful to address, so if you want to ignore this, I won't be in the least offended. But would it be realistic to hope that one day you could return to work, or at least be able to conduct some limited research, or teaching? It sure seems like you would make a very good teacher. I know your background is in science but I don't know if you are Masters level or PhD. It would be a loss to history if you never returned to science, but at the very least I know your daughters will have STEAM opportunities should they choose to take them.
I appreciate your tenderness. Fair question, I am completely ready to talk about it. My gut reaction: I don't feel hopeful for that, just because I lost so much of my memory during the years when this was undiagnosed (including pre-sickness info). Why it's only a gut reaction: the concept of a real job is so back burner that I didn't notice the burner was there 😅 I got diagnosed and started improving when Baby A was 8 months & Baby B was "half-baked," plus recovery is super up-and-down. It's varied month-by-month and I've mostly been on rest for the pregnancy/birth. If in the future my brain does come back, there's a chance I'll say FORGET WORK, I'm not losing any more time with my family! Maybe by then I'll be making decent money on youtube. Who knows!
@@MommingwithMigraine Frankly, having grown up with a mom who didn't work (much) outside the home, it was a lot more enriching for my sister and me to have her around most of the time rather than going to daycare. I get the impression you'd trade 10 Nobel Prizes to be a mom. While it makes me a bit sad to see a bright woman in science lost, it's *YOUR* life, and it's up to you to live it in the way that will make you happiest. It's clear that you were born to be a mom.
@@MommingwithMigraine For a total stranger it seems I know you pretty well. Oh, that came out way more creepy than it should have. I'm not stalking you, I promise. You are way to young for me. I could never date someone young enough to be my daughter. Also you are way to married. As an amputee I can't run very fast. Most husbands would have no trouble outrunning me. 😛😛
Hey, did you ever end up collecting the fluid from your nose and having it tested? My doctor is suspicious of this for me and when I bend I sometimes get a clear liquid that drops from my nose. She wants it collected and tested and was wondering if this was part of your diagnosis or not? I have exact symptoms as you..been struggling under the migraine and pots diagnosis for 3 years.
Attempted to test it but failed. I'm not able to get sufficient volume, and it's too unstable to collect over a long period of time 😩 There are ways around it (more invasive) by injecting dye, but I didn't even slightly humor that because I was pregnant and now that I'm postpartum I'm actually liking my leak because it keeps the pressure more under control. High pressure is much worse to me. With love from migraine jen (low pressure)
@@MommingwithMigraine thank you for your response. I have done a lot of tests in the past (MRI, CT, lumbar tap) with normal results other than a small idiopathic syrinx in my spine. My recent doctor is suspicious of a cranial leak that can often times be missed in standard MRI testing. We are going to attempt getting a nasal sample but I don’t leak very much and not every time I bend down. But I was diagnosed with keratoconus this summer which brought back the old possible CFS concern as my eye doctor said that both my eye disease and other issues are often linked to a type of cfs leak. My pressure levels tested pretty normal during my lumbar taps that were done prior to this cranial leak concern but oddly I felt better for a couple days after that fluid was removed for testing. And my recent doctor seems to think that I was evaluated properly for other types of cfs issues but not for a cranial one. Your issues seem to be from high pressure but do you ever have low pressure? I’m sure you are still in diagnostic stage as far as certain details go. Fun isn’t it? I was also mentioned the test where they inject dye in the spine but it is such an invasive test my doctor was hoping to avoid it by getting a nasal sample. I hope I’m able to get a proper sample. I always feel like I am in severe altitude sickness like what they describe some people experience climbing Mount Everest. Like in survival shows it’s like wow that’s me but I’m not on a mountain lol I started to watch your videos over the summer and many times you were experiencing your symptoms I can relate 100% and many times you would mention there goes my nose dripping and I can also relate to that So weird Hopeful we can all be normal yet
@@MommingwithMigraine Did you often feel symptoms would become worse with extra stress or stimulation? Sometimes it feels like there is literally a bomb that goes off next to me. My hearing will completely go away in one ear and then come back as a loud ringing noise and after it settles back to baseline ringing I feel extremely disoriented. I’m seriously considering just contacting your doctor you are suggesting. Would I basically be sending scans and doing bloodwork with them? I really want to avoid anything super invasive like contrast in the spine. I’m used to spending more on functional doctors but would you mind letting me know how much you paid for an initial phone visit with this doctor? I would plan on using your referral code.
@@whitneyg.1860 You sort of sound JUST like me. What you're describing sounds like my "ear bombs" - a pop, a high pitch noise that fades to the ear being deaf and me being dizzy. From my time with Dr. Driscoll, we've determined I have high cranial pressure with mostly-normal scans and the leaking is secondary when the pressure is out of control. I'm not treating the leak because for the meantime, it's a non-invasive shunt that's helping my pressure not raise too much =P What brought me to Dr. Driscoll is POTS. Her POTS Care Clinic has a couple different options for paths you can take, but if I were to start somewhere, I'd start with the POTS Care Package if it applies to you. It's a 3-month program for around $1700, you get $50 off with my code MOMMING. It's an extremely powerful box of information, specifically for inflammatory POTS, and you can see if it may help you by quickly doing the 8 screening questions. I feel like that's the most bang for your buck because you get the audio tracks that finally connect all the dots that we're all so desperate to connect, as well as supplements, a journal and biofeedback sensor for tracking and managing your stress (as you mentioned, that IS a huge trigger and you can learn why through the audios!!!), and a couple other little things. I feel like that program contains 90% of the actionable steps I'm taking to manage my symptoms now. I did an unboxing video (ruclips.net/video/tc_LcLiaCJQ/видео.html). To have them do a deep-dive into your case is much more expensive, around $9k. That's where they look at all your records and order new tests, and you get like 12 hours of appointments with the team + custom treatment and 2 months of follow up. If you mention me when you call to book, I believe you get $200 off the price that they have on their website, but don't quote me on that. The reason I suggest starting with the Package is that you can apply much (if not all) of the price of the package to the full treatment if you decide to upgrade later. Hope that helps!
My neurologist has me on topiramate for iih and it has been very effective for me. I have been taking it for a full year now and my headaches and migraines and iih are under control.
@@MommingwithMigraine so sorry to hear that! About six months in I started having some intense side effects and adverse reactions, but it turns out I was depleted of B vitamines. I combate the side effects now with a really good B 100 complex and it helps so much. Turns out these medications really deplete our B vitamins, and underlying deficiencies can definitely show up as side effects and adverse reactions. But of course some medications just don't work for some people too. I totally understand that as I am super sensitive to medications as well.
Have you looked into the connection between vitamin A toxicity and Pseudo-tumor Cerebri? Dr. Garrett Smith or Grant Genereaux are good sources. Blessings to you all
I was recently diagnosed in may, i have been put on diamox and take 750mg morning and the same again at night. I have noticed how fatigued I always am, my bowels are always lose, i feel nauseous on and off alot, lack energy. I have no idea if any of this us the IIH itself but i feel pretty miserable. However the opthalmologist says my eyes aren't as swollen so it must be helping.
I have never heard of that, but it completely makes sense. In those situations I've always used WeatherX (MigraineX) earplugs! ruclips.net/video/lIltbJjY1oA/видео.html
Has your doc mentioned anything about whether NOT responding to Diamox = no IIH? I strongly suspect IIH, and was given a trial 250mg dose and did not feel better (though I did experience severe nausea as a side effect). Thanks so much!
I didn’t respond to the Acetazolamide (Diamox) until I was put on high dose. I was gradually titrated up to 2000mg twice a day. According to my neurologist more recent studies show higher doses work better in many patients. I’m off the meds completely now and in remission. Worse side effects with the higher dose but it was worth it because it completely stopped the problem.
@@nicolel2721 wow thank you!! Every time I try it I get terrible nausea/vomitting... wondering if there is any way to overcome that and get to a higher dose...
@@KennM12 I dont like to be negative because I really hope the best for Jennifer. I will say that Driscoll is not a medical doctor. She is an eye doctor. She uses a cookie cutter approach. Everyone I know who saw her was diagnosed with the same thing. Gives us all same supplements and meds. The diamox is a diuretic and crashed my POTS. She had no alternative to offer me. So it was like oaying for a cookie cutter plan and out of alot of money because it didnt work for me. We are all different and people get POTS as a result of different things. It is not a one size fits all.
What a bummer you feel that way; that was the opposite of how I felt after treatment. IIH is commonly diagnosed by eye doctors, and Driscoll's team includes medical doctors. Her team turned my life around. My brain has improved, my POTS has improved, my life has improved. In contrast, I've been to multiple hospitals, including Stanford, and they all failed to diagnose or address my declining health for 6 years. I think that you should keep in mind that POTS is not well understood, which is why this clinic exists. Diagnosis and treatment are very difficult...and often the process is a roller coaster of worsening and improving symptoms. Diamox has been an incredible help for me but its effectiveness does vary. There are good days and bad days. Regarding supplements, my treatment was adjusted over time based on my symptoms, and Dr. Driscoll was very responsive to my feedback on how I was feeling. It sounds like your friends had similar needs (no surprise if you all have POTS), but that you got unlucky with the treatment so far. I would encourage you to follow up with Dr. Driscoll so that she can work with you to try adjusting treatment, but I definitely understand if you don't feel up for that. Chronic illness is exhausting, and the endless medical appointments are a big part of that. I'm sorry that you had a bad experience. I can only speak to my experience, which has been great...but no doctor has a 100% satisfaction rate. Love and hugs.
@@MommingwithMigraine I am truly happy that you found the right doctor for you. I dont have all the symptoms you do like leakage out of the nose. I wish she would not have taken my case because I feel like I didnt qualify for her treatment. I found out some of my symptoms were from mold exposure as well as not enough air when I breath and had procedure done on my nose and sinuses which have improved my POTS tremendously. Difficult in all this as you know as with everyone with POTS is that symptoms overlap with other issues. It is finding the right doctor for each individual. I am also currently being looked at for cranial cervical instability which can also cause alot of same symptoms. I encourage everyone to never give up searching for their answer and right doctor. It was a bummer she didnt work for me because out of pocket money was a waste for me and that it crashed my POTS which took over a year to recover from. Wish everyone the best in finding their right answers and doctor!
I totally agree that it all gets muddy with the overlapping symptoms. Every doctor is trying to match you with what they think fits best and it's painful when the two don't align. I've been around the doctor block =P But I do understand that it would feel like a much harder blow after paying out-of-pocket. I did also have a crash after starting Diamox (well, the highs were high and the lows were low), but Dr. Driscoll warned me it would be a roller coaster that gradually improved, and after a month or two of consistency, I did notice I started that upward trend. Diamox alone didn't cut it though, it took ALL the components of Dr. Driscoll's treatment plan (supplements, exercises, biofeedback, diet, relaxation/thought awareness, etc) to see the drastic improvement that I have. It's all really involved and super complicated, and like you said, varies so much based on each patient (evidenced by your mold, sinus, cervical, holy moly!). I had many things working against me at once, this was just my biggest. Sounds like you're on a good path to finding YOUR biggest issue now, and I'm so happy to hear it. NEVER GIVE UP, I'm rooting for you!!! P.S. My neck - I'm getting NUCCA work done, maybe similar? =)
i just started diamox yesterday, i’m prescribed to take 1000mg a day :( i had the WORST migraine for about 22 hours with extreme nausea and vomiting.. i’m unsure if it was because of the high dosage or the lumbar puncture itself ( two days ago )
Oh no! (I haven’t watched yet, so I will ‘try’ to keep an open mind), but I am hugely against Diamox. So many IIHers have experienced a change in body chemistry after taking Diamox, and developed a severe sulfa allergy. Please, please, please be careful.❤️
Diamox IS a sulfa drug... were they just having an allergic reaction to the Diamox itself? or are you saying they developed an allergy to the antibiotic class of sulfa drugs? Sulfa allergies are pretty common, but I don't know the rate of crossover between antibiotic vs non-antibiotic.
@@MommingwithMigraine it is a sulfa-adjacent drug. Personally, I developed the allergy (and have heard many similar stories) from taking Diamox. It started small and has developed over the years. I now have to avoid sulfa, sulfates (including in soaps) and sulfa-adjacent medications. I just wish I had known this was a possibility when I was first prescribed Diamox (with Topamax) Additionally, I developed a severe pork allergy that I have not been able to discern if related or not.
I have an allergy to sulfa antibiotics and was giving my dog dorzolamide(which is used to bring down eye pressures and is sulfa based) eyedrops for his glaucoma and was getting horribly ill and realized it was sulfa based and had to switch him to somethingelse, so cross over allergies/sensitivity is definitely a thing.
Wow, so glad I found this video. I'm currently on Diamox but on 250mg. I thought it wasn't enough and took 500mg a day and was feeling great but then got super ill. I just got back from optometrist and my papilldemia is gone and the diamox is working. I have been having a ruff week, back down to 250 mg but not sure if Diamox stopped working or I have low preasure headaches. It's so hard to figure it out. I've been on diamox for 2 years and was originally on 250mg every 8 hours. I woke up today and felt hungover but of c ourse wasn't. Ugh
I was diagnosed with IIH a few days before New Years Dec 2019. I had been having mild (not concerning to me) symptoms a few months before, fatigue and intermittent pulsatile tinnitus. My eye doctor caught the optic nerve swelling at a routine appointment. I didn’t start having concerning symptoms until a week later. I am also lucky enough to live close enough to the University of Iowa who are one of the leaders in IIH research so I got early, aggressive treatment and I’m happy to report that I have been in complete remission and off all medication for about 8 months now. I did not respond at all to lower doses of Acetazolamide at all. I was on 2000mg 2 times a day (so 4000 a day) I was then slowly titrated down after my vision field test were back to normal. I got every side effect on the label, had 6 or 8 (lost count) kidney stones and had to start taking prescription potassium. I still refer to Acetazolamide as poison, but even knowing how miserable it was I’d do it again because it (and weight loss) helped me get to where I am today. I found the heating pad tick worked for me too. It didn’t take long for me to realize that cold made the pain in my hands and feet worse. I also made sure to keep socks/mittens available at all time (even in the summer) so I could warm them up if I needed to. The other thing that really helped was to switch from the regular tabs to the extended release tabs. My side effects got a lot better and some like the nausea and pins & needles and numbness to my face/tongue disappeared completely.
To make an observation I have hydrocephalus another observation doctors have told me that they cannot do anything for it because the surgery will give me a 50-50 chance of making it off the table top of that now migraines getting bad and when I mean bad I mean it’s getting level of debilitation and also having difficulty with being able to talk sometimes now I’ve got a whole new problem now probably in this and numbness in my left arm and weakness in my left arm and weakness in my left leg trying to deal with this but also now because of my migraine also I am noticing and I found out they can’t even find my hydrocephalus so I’m dealing probably with a low pressure issue and I also have had some fluid coming from my nose and some pressure behind my right ear as well now I’m having pain just basically on the right side of my head which sometimes travels throughout my entire head the orders are unbelievable but I know I’ve got more going on and as of Valentine’s Day I go in then to the hospital for two MRIs one for a brain study for my white brain matter which is deteriorating rapidly but I don’t know what kind of white brain matter disease that I’m developing and the doctor told me my neurologist told me that I do have that going on MRI is going to be to find out what kind of damage what possible is going on and to find out exactly what type of brain matter disease that I may have and I’m also having a flow study done to see whether or not I have any leaks in my spine neck and or in my head so I got all that going on don’t know what I’m gonna do medication wise because I also take a myriad of medication for borderline personality disorder bipolar to PTSD generalized anxiety disorder major depressive disorder dissociative identity disorder now migraines so that’s a lot to deal with stressing over all of it oh yeah that definitely having anxiety oh yeah that’s going through the roof a bit every so often I get pains of fluttering in my chest does not feel good I don’t recommend it for anybody and I go later on around the 22nd or 21st of this month to see my neurologist to find out what the results are but to be an hour and an MRI I’m glad I i’m getting medication to help me with a kiss to relax during the MRI because I cannot handle loud noise or nor can I handle confined spaces for very long imagine what that’s gonna be like when it when you’re in an MRI for an hour should know how noisy those things are and how uncomfortable they can be I’ve been through enough of them so I thought I’d share that bit of information with you Jan correction Jen and I apologize about my punctuation spelling errors and all that I failed English classes they also have a learning disability included
I’m interested in knowing if anyone else taking Acetazolamide noticed a change in their periods. Mine became longer and much more painful. My neurologist says it was a coincidence, but as I titrated off the Acetazolamide they got better and are back to normal now that I’m no longer on the medication. Curious if anyone else noticed this.
i have the same thing I take 2 pills 500 mg each. how I found out by an eye doctor who thought I had a tumor in my brain and that I was going to go blind because my eye was disattaching the nerve then they sent me to Nero and got an MRI they saw a little pressure but didn't think it was not to bad then we did a lumbar puncture mine was at 21 the fluid so a little high it's under control so far
Similar story for me... Except I was having symptoms like seizures, uncontrollable eye movement, vision loss & temporary blindness, dizziness, nausea, pressure on my right ear & both eyes but mostly my right, stiffness in my neck & back. My pressure was 31.
Post epidural spinal headaches are miserable. I thought vomiting with migraines was bad. The headache was so bad I was given narcotics to get through it.
wow. I'm really concerned about the entire content of this video. I thought body pH was tightly regulated by homeostasis. And that the foods you choose to eat rarely effect blood pH. I understand recommending some diet changes isn't inherently harmful, but the suggestion that you can change the way your body regulates itself might be. This feels like pseudoscience.
Blood is highly buffered, is not likely to change from a healthy diet. Eating fruits & veggies & balanced electrolytes + lowering excess sugar & processed foods is not harmful advice to be worried about 💜
I have a muscle disease that is caused by a mutation that is autosomal recessive meaning both parents have to have the share the same mutation on the chromosome clcn1 that effects my muscle chloride channels and potassium triggers my muscles to trigger the myotonia along with panic attacks, cold 🥶 and stress,I have had kidney stones but no more occurrences ever since I quit eating blueberries 🫐 it must be an enzyme thing, and I have high pressure in my eyes 👀 I have a lot of brain fog,migraine headaches, ringing in the ears and motion sickness, and I get very weak, do you think these medications that you have here might help me by helping my mitochondria and ATP, gain more energy? I have had my muscle disease all my life and I’m now 60 and have 4 children!
This is what my niece took and finally weaned off of. I haven’t finished the video, but she noticed carbonated drinks tasted terrible. I was hoping she would stay away from them, but she’s drinking them again😢. It just makes me so upset with the medical community that your symptoms were dismissed for so long. With your education and how hard you have always worked to get better, you weren’t taken seriously. Education is a privilege and it makes me so sad when healthcare practitioners are so judgmental and even discriminate against those who don’t have the ability to fight. Everyone is important and should be treated respectfully.
I have that problem, Dr's dismiss all my problems so I eventually had to buy my own meds (exactly what I should have been prescribed for my diagnosis, like my Dr's will diagnose my problems but never bother helping) so now they label me as a druggie so are further refusing my meds! If they'd given me the meds to begin with I wouldn't have had to buy them :(
Absolute joke, now I'm being told to simply do breathing exercises to deal with all my problems! 🤣🤣🤣
I was just diagnosed with IIH last week, my opening pressure was 31, and I was put on diamox... I also noticed sodas tasting weird! I actually swapped mine out just yesterday and told my son to pour it out because I thought something was wrong with it.
Watching this was, woah. I have had IIH for 3 years now and I have never had anybody to talk to about it. When you mentioned your feet and hands tingling and the bottom text said when you bend legs, I cried. That is the bane of my existence. Six months ago I developed constant tinnitus and I am hoping with everything I am that it is from the Diamox. My opening pressure was 40, and last week my 3rd LP showed it was 22. So I am currently lowering my dose of Diamox and in two weeks, I will be off of it completely. Thank you for posting your story.
How is your tinnitus is it pulsatike or ringing
Just got diagnosed, I'm on 500mg. 250mg twice a day. Thank you for the video! It was extremely helpful
Hi Jen.
I came across your channel last night and I can’t believe how much I can relate. I was diagnosed with IIH about a year ago. I was taking so much medications including Diamox. I was taking 1,000mg every 6 hrs because my pressure was too high. I went through several lumbar punctures, it was scary. I lost my vision completely before I was diagnosed. I kept going to so many ERs and they kept telling me I had migraines when I didn’t even know how those felt because I never had them. After I was actually diagnosed and treated, I slowly started getting my vision back. I still haven’t recovered 100%. But every time I have a neuro-ophthalmology check up they say it’s slightly better. My vision loss right now is 20/500.
Also, carbonated drinks actually tasted like medicine to me. Sometimes even like protein because I used to take protein shakes before.
Oh my goodness I can't believe you went through misdiagnosis even with the vision loss. They should have caught this for you!!!
Hi!!! I am so glad to have found your channel. It's as if I am watching my life story as you tell yours. TEN YEARS of dismissive drs, traveling the country for specialists, no answers, constant pain, not being believed- only to find out in November of 2021 that I indeed have IIH as well as a sphenoid sinus cranial leak and Eagle Syndrome. Surgery is scheduled for September of this year. I would truly love connecting with you to bounce stories off of each other and offer advice along the way! Hope this message finds you on a good pain day
I did the lumbar puncture today and was so relieved there really is pressure in my brain.
All of my (limited - ha!) memories of being on Topiramate just came flooding back! 😬😂 In all seriousness though, it’s great to see where you’re at with your health. If surgery is in the future, we’ll be here supporting and encouraging you!
Topiramate is evil, I've had three people in my close family take it... it did more harm that good for all of them. Hope research is done in the near future to come up with something either than Topiramate
Thank you!! 💜 Topiramate made like a third of my hair fall out 😬 it is growing back now though!!!
Good job. I’ve been on diamox 8 years. Dosage is 625 mg/day. 125 during the day and 500 at night…. This is give or take. And yes, I have kidney stones… no fun at all but I watch them, and drink a ton of water. No coffee, caffeine, low in carbs, sugar and stress… all triggers and oh yes…. No salt or as little as possible. I read every label carefully. Hope your journey is going well… it is a tough road.
Hi Jen,
in general I really enjoy your videos! I just want to caution about the 'acidifying / alkalizing' your body subject. I'm sure you as a biochemist have done your research about the medication it's effect etc. and are aware of the very narrow room of the blood pH that causes life threatening issues very quickly if altered. However, there is a lot of talk about trendy shakes/ nutrition and stuff about that subject from people who don't know what they're talking about what so ever. I hope you get where I'm coming from. Maybe put a little disclaimer in there or something 😅
Wishing you the best
I get where you're coming from, but the blood is highly buffered and the things I suggested (fruits, veggies, balanced electrolytes, etc + avoiding sugary, highly processed foods) are not life-threatening. I always put disclaimers where I feel they are necessary, and mark my videos as "not for kids" just in case 💜
@@MommingwithMigraine oh no, I realize, that none of the things you suggested would do any harm for exactly that reason. I didn't mean a disclaimer in the don't try it sense. I just thought you would mention the blood being highly buffered etc and that that isn't something that is usually necessary to do. I probably didn't express myself very well, I don't usually talk about such topics in english
I really wish so bad I could tolerate that med. It made me so ill. I thought I was slowly leaving this world. I called and they tested my blood and I was one of the rare ones that got really sick.
Lots of great information! So glad this is working for you, hope it lasts long enough for you to find a permanent solution. 😊 Sounds like you're well on your way.
Thank you! I'm doing alright for now... it could go anywhere from here. We'll see. But I sure am thankful for this medication for what it's done so far.
My daily diamox dose is 2 grams. I take 1 gram of extended release in the morning and 1 gram at night. I also take Klor-Con M20 twice a day because of my NCS/POTS to keep potassium up with all the fluid loss. I didn’t have the constant migraines, only sinus pressure headaches that I thought was allergies. I wasn’t diagnosed with IIH until I was almost blind and I now have some permanent vision loss. I was diagnosed through MRI and lumbar puncture. My opening pressure was 48.5. They removed enough fluid at that point to get me down to 31. Still high but oh my goodness.
Hey Jen the last time I commented I was binging your videos becuase I was in the hospital. I was their inpatient for testing. Of witch it was found I am not epileptic like I was told. At the time that left the question of why I was haveing sezuire like episodes. Scince than they have stoped and we have a theory as to what was cuaseing it. However their are still meny mysteries about my pots and other conditions. As such I'm curently inclined to look into possible underlying cuases of pots. As well as looking for information on new neurologists near me. Even looking into pots care on, witch I don't think I'd be able to do after looking into it. But watching your videos so far have ben helpfull in information I can take and then run with and look into myslef. This is one I find rilly informative so thank you.
Hi Jen, I was diagnosed from a lumbar puncture and it would have been necessary for the diagnosis even if it hadn't been my choice (I usually heal quickly) after the first lumbar puncture diagnosis confirmed and I started diamox. My current prescription is 1000mg twice daily. For me the diamox did normalize my pressure but it never helped with my symptoms only the lumbar punctures did so I got 3 done to date (this started December 2021). I developed a leak from the third lumbar puncture which has now been patched. My neurosurgeon is confident that the best path forward for me (no stenosis in the veins and small ventricles) is a LP shunt and I am cautiously optimistic about my future
I am waaay older than average for IIH. I was recently on 4g/day of Diamox and tolerated it well until all of a sudden it made me so very miserable, and it wasn’t improving my optic nerves or over all condition. Had a therapeutic lumbar puncture and was at 37 opening pressure. Had a second puncture three weeks later and was at 34. Having another tomorrow (3 weeks later). I was deemed “refractory” to drug treatment but am currently on Topamax, it isn’t helping but I have to do something. Optic nerve swelling is worsening. It jumped from grade 1 papilledema to grade 3 in the last month. All this is happening while counting the days to get to Mayo Clinic to see if I have venous sinus stenosis. If I’m a candidate for a stent, I’ll do that over a shunt any day of the week. Too many risks with the modern shunts for my liking and really good results with the stents addressing the actual problem with IIH. I’m from an area that offers nearly nothing in the way of neurologists that have a clue in regards to IIH. I was first diagnosed in the early 1990’s, had a simple LP shunt (basically gravity fed, no programmable valve) placed and it worked like a champ for 29 years until my appendix ruptured this year and the shunt had to be rerouted out of the abdominal cavity to avoid possible contamination. In that process, they destroyed the drain and then claimed they could not get in a suitable LP shunt. In the end, they removed it entirely after claiming I no longer needed it. They were entirely wrong.
My sister is in remission from IIH. She had an extremely fast onset which she thinks helped get her diagnosed faster. Her eye doctor caught it early and she had an amazing neurologist who treated her aggressively and was up to date with the most current research. It became clear pretty quickly that the normal dosage of diamox was not working for her, so her doctor put her on a extremely high does. There is some fairly new research out that shows that starting with a high dose and weaning off is very effective. He gave her a print out of the study to give the pharmacist because he said the study was so new that the pharmacist might think it was a mistake. She also switched from the multiple doses a day to a slow release dose. That help some of the side effects, and she only had to take once a day. She took that giant does for awhile and then was weaned off slowly. It took about 18 months to be completely weaned off, but she has now been in remission for about 8 months.
Do you have the study? Im 31 days out from a high volume BP.
I’m the sister. 😆 That information is almost true except I was still taking the Acetazolamide 2 times a day. I went from doses every 6 hours to 2000mg every 12. while I still had awful side effects they improved a lot when I switched to extended release.
I’m on 500mg. I had a lumbar puncture and my pressure was 25. I could tell it was lower than it had been and I was lucky my headache didn’t get too much worse post procedure. I have been begging for labs but I’m constantly looked at as if I know nothing about my own body. My labs showed that I had severely low B12 (symptoms are horrible). I also had extreme tingling in my hands and feel and my feet hurt!!! I had my last eye appointment about 6 months ago but I’m starting to have significant issues with one eye-it will go dim as if it’s dark in the room when it’s not and significantly worse double vision.
As with any medication, you'll have to talk about the risks and benefits with your doctor! I highly prefer the more natural routes, so I was thrilled when my doctor at POTS Care prioritized getting me on gentler supplements and making lifestyle changes first, rather than jumping straight to being invasive and prescribing pills. Those things will hopefully sustain me in the long run, but Diamox has been great to get me back on my feet. Here's the video of my symptoms (ruclips.net/video/TK3xZQfd-mE/видео.html) and my non-prescription methods (ruclips.net/video/tc_LcLiaCJQ/видео.html).
POTS Care Clinic that diagnosed me specializes in treating POTS, but also IIH, among other things. They LISTENED and changed my life 😭 got me on the road to recovery from IIH and POTS. Here are the discounts I can get you for the Clinic & for my Supplements:
○ POTSCare.com - You get $200 off your Individualized POTS treatment if you mention me when you call to book.
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My link: potscarepackage.com/partner/mommingwithmigraine/
Unboxing video: ruclips.net/video/tc_LcLiaCJQ/видео.html
○ Supplements: I take Thera pH, Parasym Plus, and NAC Max.
My link: vagusnervesupport.com/?rfsn=6261617.9d93910
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I am so glad ..found your channel....had all these symptoms...had been on Diamox for almost 5 years now...but now again my pressure has increased...my vision is going worse now....just want to know people are talking about Sulpha allergy as side effect of this medicine...all my doc says is reduce weight and continue with medicine..
Best of luck! I hope this gets better for you from here. It's so intense!
I have just been diagnosed one month ago with iih .. i had a intracranial pressure 37 .. i am on diamox 750mg/day and feeling sick.. i can't swim , can't do any sport because i get tired quickly .
Well this is an older video but I take 2,000 per day. I’ve been on it since the end of 2021. I am glad you said it looses effectiveness with time because I feel like I’m there. Thanks for the info!
Oh man! What a bummer it's wearing off. How are your kidneys??!! I have stones now 😮💨
I have a few but they are not causing problems. The rest of me however is not liking the med. My bowels are crazy, usually loose, my thinking is slow, I’ve had so much trouble taking it at times I just skip it. I have decided to stop it for a while to see if things improve. I’m an RN ironically and this med is not my favorite. It’s affecting me at work which is a problem and the reason I weaned myself off of the topomax. I hope you continue to improve!
I am about to go in for a lumbar puncture in a few days to see if I have IIH but my doctor seems pretty certain I do since all my symptoms align with it. I've been considering pots for a while now though, and now I can't tell if my symptoms would be from pots or from IIH, could you possibly do a video comparing your symptoms from each, and what makes them stand out as different to you personally?
How did you train buddy for your migraines? I am 14 and have migraines about a everyday. PLS HELP ME!!!!!
That’s amazing! You could tell a difference right away?
If you do need a lumbar puncture, make sure they use a non cutting needle. It reduces the side effects of the headache significantly. It's rare that I get the headache with it
With your IIH did you notice that low pressure weather systems would bother you? And when you did get migraine symptoms did it worsen when you sat down?
I been studying my IIH for 28 yrs.. no meds for it... Family an friends treated me different so I never used meds just delt with the discomfort an etc.
Now I just use medical weed.. weed helps me focus an relaxing my muscles or nerves...
Hi.. I'm lost an can't get the help I need.. crazy I have to jump thu hoops ..
Thanks so much for this video.. really helped .. just diagnosed..
The worst side effect for me is ringing in my ears. I started diamox last week for IIH, the only symptom I had was papilledema in my eyes. Its really frustrating to have more symptoms because of the prescription then the IIH itself.
I was on 1000mg twice a day and it was giving me such numb tingly finger tips that couldn’t even grab stuff in my purse! It made me insanely tired. Now I’m on just nightly 500mg and those symptoms are way better if not gone and it still is pretty effective in my pressure control
Burning feet too!! Oh my that’s probably why. Like just the bottom of my feet.
OMG thank goodness you were able to get the dose moved so you could get the relief without the side effect. The burning feet was freaking WILD.
I was on that medicine for exactly 7 months and I know my body was not responding well and I have side effects. I literally lost 39 pounds just to get off that medication.
I've thought of this before, but I'm not sure I've suggested it.
You like to change sides between segments in your videos, and I know that when you are feeling unwell, this can be overly energy intense.
If that's the case, why not digitally reverse the image between segments. This way you change change sides without actually moving.
Hahahhhahaha 😆 I've considered it! It's oddly disorienting.
@@MommingwithMigraine Not really oddly, because if you think about it, it's understandable.
People very often feel odd looking at a photograph of their own face, and research has shown that this feeling is absent if the photograph is reversed.
The reason is, when you look in a mirror (the most common way you see yourself, thus the most familiar self image you have) you don't see what everyone else sees. You see your face reversed.
Even without blemishes (scars, birthmarks moles) no human face is perfectly symmetrical, so even if it's too subtle to notice consciously you can tell the difference between a reversed face you know from one that is not reversed.
One interesting study I saw found that the more symmetrical a human face is, the more attractive people will rate it. However, this is true only to a point. If a face is perfectly symmetrical it will be rated as slightly less attractive than a face that is only nearly perfectly symmetrical.
If a face is perfectly symmetrical it looks fake.
So glad you saw an improvement so fast. Fish oil at about 4000mg 2/day was like a light bulb went off in my brain.
Wish you could expound more on this.. just diagnose.
I have MS. Brain fog is a symptom. The fish oil helps my brain function more normal.
I have deviated septum and due to which less oxygen in head and i have heaviness and or pressure in head so can i take diamox for that?
This is an old video but I wondered.. did you have to take potassium tablets or make sure that wasn’t getting to low? I worry about that with diamox
Yes, I had a prescription one and also did other non-rx alkalinity things... can't remember whether I mentioned those in this video 💜💜💜
Found you after I started a daily migraine journal (Migraine Compass) here on YT. I'm a fellow migraine and IIH patient. I was taking 500 MG of diamonds 2x per day but have since stopped as it lost its effectiveness for me
hi jen
i have see some of your video my wife have also the same diagnos with you from 2019 she takes also Diamox for IIH.sometimes its compination with topiramax.
I will like to ask you a very personal question if its possible to contakt you with some other way .
We live in Sweden.
thanks if you answer
One love sister from Brisbane Australia 🇦🇺
💜💜💜
why dont you try to fix the cause of IIH? Did you get an MRV? Were they able to identify any venous compression thats causing your IIH?
I did explain this... the diamox was to protect my vision until I figured out how to manage it otherwise. I was off diamox within a year. 💜
There is one thing I am wondering about, and I understand if it's too painful to address, so if you want to ignore this, I won't be in the least offended.
But would it be realistic to hope that one day you could return to work, or at least be able to conduct some limited research, or teaching?
It sure seems like you would make a very good teacher. I know your background is in science but I don't know if you are Masters level or PhD.
It would be a loss to history if you never returned to science, but at the very least I know your daughters will have STEAM opportunities should they choose to take them.
I appreciate your tenderness. Fair question, I am completely ready to talk about it. My gut reaction: I don't feel hopeful for that, just because I lost so much of my memory during the years when this was undiagnosed (including pre-sickness info). Why it's only a gut reaction: the concept of a real job is so back burner that I didn't notice the burner was there 😅 I got diagnosed and started improving when Baby A was 8 months & Baby B was "half-baked," plus recovery is super up-and-down. It's varied month-by-month and I've mostly been on rest for the pregnancy/birth. If in the future my brain does come back, there's a chance I'll say FORGET WORK, I'm not losing any more time with my family! Maybe by then I'll be making decent money on youtube. Who knows!
@@MommingwithMigraine Frankly, having grown up with a mom who didn't work (much) outside the home, it was a lot more enriching for my sister and me to have her around most of the time rather than going to daycare.
I get the impression you'd trade 10 Nobel Prizes to be a mom. While it makes me a bit sad to see a bright woman in science lost, it's *YOUR* life, and it's up to you to live it in the way that will make you happiest. It's clear that you were born to be a mom.
@@erictaylor5462 you nailed it 👏 💜
@@MommingwithMigraine For a total stranger it seems I know you pretty well. Oh, that came out way more creepy than it should have. I'm not stalking you, I promise.
You are way to young for me. I could never date someone young enough to be my daughter. Also you are way to married. As an amputee I can't run very fast. Most husbands would have no trouble outrunning me. 😛😛
Hey, did you ever end up collecting the fluid from your nose and having it tested? My doctor is suspicious of this for me and when I bend I sometimes get a clear liquid that drops from my nose. She wants it collected and tested and was wondering if this was part of your diagnosis or not? I have exact symptoms as you..been struggling under the migraine and pots diagnosis for 3 years.
Attempted to test it but failed. I'm not able to get sufficient volume, and it's too unstable to collect over a long period of time 😩 There are ways around it (more invasive) by injecting dye, but I didn't even slightly humor that because I was pregnant and now that I'm postpartum I'm actually liking my leak because it keeps the pressure more under control. High pressure is much worse to me. With love from migraine jen (low pressure)
@@MommingwithMigraine thank you for your response. I have done a lot of tests in the past (MRI, CT, lumbar tap) with normal results other than a small idiopathic syrinx in my spine. My recent doctor is suspicious of a cranial leak that can often times be missed in standard MRI testing. We are going to attempt getting a nasal sample but I don’t leak very much and not every time I bend down. But I was diagnosed with keratoconus this summer which brought back the old possible CFS concern as my eye doctor said that both my eye disease and other issues are often linked to a type of cfs leak. My pressure levels tested pretty normal during my lumbar taps that were done prior to this cranial leak concern but oddly I felt better for a couple days after that fluid was removed for testing. And my recent doctor seems to think that I was evaluated properly for other types of cfs issues but not for a cranial one. Your issues seem to be from high pressure but do you ever have low pressure? I’m sure you are still in diagnostic stage as far as certain details go. Fun isn’t it?
I was also mentioned the test where they inject dye in the spine but it is such an invasive test my doctor was hoping to avoid it by getting a nasal sample. I hope I’m able to get a proper sample.
I always feel like I am in severe altitude sickness like what they describe some people experience climbing Mount Everest. Like in survival shows it’s like wow that’s me but I’m not on a mountain lol
I started to watch your videos over the summer and many times you were experiencing your symptoms I can relate 100% and many times you would mention there goes my nose dripping and I can also relate to that
So weird
Hopeful we can all be normal yet
@@MommingwithMigraine Did you often feel symptoms would become worse with extra stress or stimulation? Sometimes it feels like there is literally a bomb that goes off next to me. My hearing will completely go away in one ear and then come back as a loud ringing noise and after it settles back to baseline ringing I feel extremely disoriented. I’m seriously considering just contacting your doctor you are suggesting. Would I basically be sending scans and doing bloodwork with them? I really want to avoid anything super invasive like contrast in the spine. I’m used to spending more on functional doctors but would you mind letting me know how much you paid for an initial phone visit with this doctor? I would plan on using your referral code.
@@whitneyg.1860 You sort of sound JUST like me. What you're describing sounds like my "ear bombs" - a pop, a high pitch noise that fades to the ear being deaf and me being dizzy. From my time with Dr. Driscoll, we've determined I have high cranial pressure with mostly-normal scans and the leaking is secondary when the pressure is out of control. I'm not treating the leak because for the meantime, it's a non-invasive shunt that's helping my pressure not raise too much =P What brought me to Dr. Driscoll is POTS. Her POTS Care Clinic has a couple different options for paths you can take, but if I were to start somewhere, I'd start with the POTS Care Package if it applies to you. It's a 3-month program for around $1700, you get $50 off with my code MOMMING. It's an extremely powerful box of information, specifically for inflammatory POTS, and you can see if it may help you by quickly doing the 8 screening questions. I feel like that's the most bang for your buck because you get the audio tracks that finally connect all the dots that we're all so desperate to connect, as well as supplements, a journal and biofeedback sensor for tracking and managing your stress (as you mentioned, that IS a huge trigger and you can learn why through the audios!!!), and a couple other little things. I feel like that program contains 90% of the actionable steps I'm taking to manage my symptoms now. I did an unboxing video (ruclips.net/video/tc_LcLiaCJQ/видео.html). To have them do a deep-dive into your case is much more expensive, around $9k. That's where they look at all your records and order new tests, and you get like 12 hours of appointments with the team + custom treatment and 2 months of follow up. If you mention me when you call to book, I believe you get $200 off the price that they have on their website, but don't quote me on that. The reason I suggest starting with the Package is that you can apply much (if not all) of the price of the package to the full treatment if you decide to upgrade later. Hope that helps!
My neurosurgeon prescribed PhosNaK and Bicitra to combat the Diamox side effects. It helped me to be able to stay on it longer.
I'm glad those helped you out! And thanks for sharing, it could help someone if they run into your comment!!
My neurologist has me on topiramate for iih and it has been very effective for me. I have been taking it for a full year now and my headaches and migraines and iih are under control.
That is awesome!! Topiramate didn't work out for me because of side effects 😩 (back in 2017 when I was dx migraine)
@@MommingwithMigraine so sorry to hear that!
About six months in I started having some intense side effects and adverse reactions, but it turns out I was depleted of B vitamines. I combate the side effects now with a really good B 100 complex and it helps so much. Turns out these medications really deplete our B vitamins, and underlying deficiencies can definitely show up as side effects and adverse reactions. But of course some medications just don't work for some people too. I totally understand that as I am super sensitive to medications as well.
@@RR-wy4lz so true! I'm really glad you were able to figure it out, topiramate can be such a life changer for the people who it works for!
I am taking 500mg daily for my IIH. I get extreme aide effect of unbalanced/clumsy. I found the tingling in my feet leaves quickly if I walk.
Have you heard of Glucagon peptide -1 RA therapy forIIH therapy ???
nope!
Have you looked into the connection between vitamin A toxicity and Pseudo-tumor Cerebri? Dr. Garrett Smith or Grant Genereaux are good sources. Blessings to you all
I was recently diagnosed in may, i have been put on diamox and take 750mg morning and the same again at night. I have noticed how fatigued I always am, my bowels are always lose, i feel nauseous on and off alot, lack energy. I have no idea if any of this us the IIH itself but i feel pretty miserable. However the opthalmologist says my eyes aren't as swollen so it must be helping.
Oh and I get really bad pins and needles in my fingers where it literally feels like I'm being pricked with needles
Hi! I use Diamox for pressure changes (storms, flying, etc). low dose, 250mg I think.
I have never heard of that, but it completely makes sense. In those situations I've always used WeatherX (MigraineX) earplugs! ruclips.net/video/lIltbJjY1oA/видео.html
A lot of these side effects sound very similar to Topamax, which makes sense since it's also a carbonic anhydrase inhibitor.
Yeah they do! And both drugs seem to either be a "you love it" or a "you hate it" kind of deal!
Has your doc mentioned anything about whether NOT responding to Diamox = no IIH? I strongly suspect IIH, and was given a trial 250mg dose and did not feel better (though I did experience severe nausea as a side effect). Thanks so much!
That didn't come up for me because I responded so much... but I MIGHT have heard of it taking a few weeks to be effective. I can't remember 🤔
I didn’t respond to the Acetazolamide (Diamox) until I was put on high dose. I was gradually titrated up to 2000mg twice a day. According to my neurologist more recent studies show higher doses work better in many patients. I’m off the meds completely now and in remission. Worse side effects with the higher dose but it was worth it because it completely stopped the problem.
@@nicolel2721 wow super interesting! Also, do you know what caused your remission?
@@nicolel2721 wow thank you!! Every time I try it I get terrible nausea/vomitting... wondering if there is any way to overcome that and get to a higher dose...
Diamox increased my POTS symptoms. It about crashed me and Driscoll kept telling me to stay on it. Really hope all goes well for you!
Did you have an positive experience with Dr Driscoll?
@@KennM12
I dont like to be negative because I really hope the best for Jennifer.
I will say that Driscoll is not a medical doctor. She is an eye doctor. She uses a cookie cutter approach. Everyone I know who saw her was diagnosed with the same thing. Gives us all same supplements and meds. The diamox is a diuretic and crashed my POTS. She had no alternative to offer me. So it was like oaying for a cookie cutter plan and out of alot of money because it didnt work for
me. We are all different and people get POTS as a result of different things.
It is not a one size fits all.
What a bummer you feel that way; that was the opposite of how I felt after treatment. IIH is commonly diagnosed by eye doctors, and Driscoll's team includes medical doctors. Her team turned my life around. My brain has improved, my POTS has improved, my life has improved. In contrast, I've been to multiple hospitals, including Stanford, and they all failed to diagnose or address my declining health for 6 years.
I think that you should keep in mind that POTS is not well understood, which is why this clinic exists. Diagnosis and treatment are very difficult...and often the process is a roller coaster of worsening and improving symptoms.
Diamox has been an incredible help for me but its effectiveness does vary. There are good days and bad days. Regarding supplements, my treatment was adjusted over time based on my symptoms, and Dr. Driscoll was very responsive to my feedback on how I was feeling. It sounds like your friends had similar needs (no surprise if you all have POTS), but that you got unlucky with the treatment so far. I would encourage you to follow up with Dr. Driscoll so that she can work with you to try adjusting treatment, but I definitely understand if you don't feel up for that. Chronic illness is exhausting, and the endless medical appointments are a big part of that.
I'm sorry that you had a bad experience. I can only speak to my experience, which has been great...but no doctor has a 100% satisfaction rate. Love and hugs.
@@MommingwithMigraine
I am truly happy that you found the right doctor for you. I dont have all the symptoms you do like leakage out of the nose. I wish she would not have taken my case because I feel like I didnt qualify for her treatment. I found out some of my symptoms were from mold exposure as well as not enough air when I breath and had procedure done on my nose and sinuses which have improved my POTS tremendously. Difficult in all this as you know as with everyone with POTS is that symptoms overlap with other issues. It is finding the right doctor for each individual. I am also currently being looked at for cranial cervical instability which can also cause alot of same symptoms. I encourage everyone to never give up searching for their answer and right doctor. It was a bummer she didnt work for me because out of pocket money was a waste for me and that it crashed my POTS which took over a year to recover from. Wish everyone the best in finding their right answers and doctor!
I totally agree that it all gets muddy with the overlapping symptoms. Every doctor is trying to match you with what they think fits best and it's painful when the two don't align. I've been around the doctor block =P But I do understand that it would feel like a much harder blow after paying out-of-pocket. I did also have a crash after starting Diamox (well, the highs were high and the lows were low), but Dr. Driscoll warned me it would be a roller coaster that gradually improved, and after a month or two of consistency, I did notice I started that upward trend. Diamox alone didn't cut it though, it took ALL the components of Dr. Driscoll's treatment plan (supplements, exercises, biofeedback, diet, relaxation/thought awareness, etc) to see the drastic improvement that I have. It's all really involved and super complicated, and like you said, varies so much based on each patient (evidenced by your mold, sinus, cervical, holy moly!). I had many things working against me at once, this was just my biggest. Sounds like you're on a good path to finding YOUR biggest issue now, and I'm so happy to hear it. NEVER GIVE UP, I'm rooting for you!!! P.S. My neck - I'm getting NUCCA work done, maybe similar? =)
Was your mri ever mistaken for MS?
No, I don't have white matter lesions
i just started diamox yesterday, i’m prescribed to take 1000mg a day :( i had the WORST migraine for about 22 hours with extreme nausea and vomiting.. i’m unsure if it was because of the high dosage or the lumbar puncture itself ( two days ago )
Oh no! (I haven’t watched yet, so I will ‘try’ to keep an open mind), but I am hugely against Diamox. So many IIHers have experienced a change in body chemistry after taking Diamox, and developed a severe sulfa allergy. Please, please, please be careful.❤️
Diamox IS a sulfa drug... were they just having an allergic reaction to the Diamox itself? or are you saying they developed an allergy to the antibiotic class of sulfa drugs? Sulfa allergies are pretty common, but I don't know the rate of crossover between antibiotic vs non-antibiotic.
@@MommingwithMigraine it is a sulfa-adjacent drug. Personally, I developed the allergy (and have heard many similar stories) from taking Diamox. It started small and has developed over the years. I now have to avoid sulfa, sulfates (including in soaps) and sulfa-adjacent medications. I just wish I had known this was a possibility when I was first prescribed Diamox (with Topamax)
Additionally, I developed a severe pork allergy that I have not been able to discern if related or not.
I have an allergy to sulfa antibiotics and was giving my dog dorzolamide(which is used to bring down eye pressures and is sulfa based) eyedrops for his glaucoma and was getting horribly ill and realized it was sulfa based and had to switch him to somethingelse, so cross over allergies/sensitivity is definitely a thing.
I take 250mg once every two weeks. Usually it feels too much so I probably can take less. Usually just take it when a bad headache happens
My medicine gives me dry mouth. I use water with electrolytes. You can also try squirt electorate additive for water or juice.
Hope this is helpful. ❤
Wow, so glad I found this video. I'm currently on Diamox but on 250mg. I thought it wasn't enough and took 500mg a day and was feeling great but then got super ill. I just got back from optometrist and my papilldemia is gone and the diamox is working. I have been having a ruff week, back down to 250 mg but not sure if Diamox stopped working or I have low preasure headaches. It's so hard to figure it out. I've been on diamox for 2 years and was originally on 250mg every 8 hours. I woke up today and felt hungover but of c ourse wasn't. Ugh
I was diagnosed with IIH a few days before New Years Dec 2019. I had been having mild (not concerning to me) symptoms a few months before, fatigue and intermittent pulsatile tinnitus. My eye doctor caught the optic nerve swelling at a routine appointment. I didn’t start having concerning symptoms until a week later. I am also lucky enough to live close enough to the University of Iowa who are one of the leaders in IIH research so I got early, aggressive treatment and I’m happy to report that I have been in complete remission and off all medication for about 8 months now.
I did not respond at all to lower doses of Acetazolamide at all. I was on 2000mg 2 times a day (so 4000 a day) I was then slowly titrated down after my vision field test were back to normal. I got every side effect on the label, had 6 or 8 (lost count) kidney stones and had to start taking prescription potassium. I still refer to Acetazolamide as poison, but even knowing how miserable it was I’d do it again because it (and weight loss) helped me get to where I am today.
I found the heating pad tick worked for me too. It didn’t take long for me to realize that cold made the pain in my hands and feet worse. I also made sure to keep socks/mittens available at all time (even in the summer) so I could warm them up if I needed to. The other thing that really helped was to switch from the regular tabs to the extended release tabs. My side effects got a lot better and some like the nausea and pins & needles and numbness to my face/tongue disappeared completely.
I'm on acetazolamide but for another disability. I take 1000 mg per day
Diamox 500 mg daily side effect like muscle spasm (all day) at the top of my head. Very weird.
What is the time frame for " lot a long time frame" ?
I'm on 500 too. I had a lumbar puncture also
I’m taking 16 a day. 8 in the morning and 8 at night. I hate the tingling in my hands and feet. I’m debating shunt surgery.
To make an observation I have hydrocephalus another observation doctors have told me that they cannot do anything for it because the surgery will give me a 50-50 chance of making it off the table top of that now migraines getting bad and when I mean bad I mean it’s getting level of debilitation and also having difficulty with being able to talk sometimes now I’ve got a whole new problem now probably in this and numbness in my left arm and weakness in my left arm and weakness in my left leg trying to deal with this but also now because of my migraine also I am noticing and I found out they can’t even find my hydrocephalus so I’m dealing probably with a low pressure issue and I also have had some fluid coming from my nose and some pressure behind my right ear as well now I’m having pain just basically on the right side of my head which sometimes travels throughout my entire head the orders are unbelievable but I know I’ve got more going on and as of Valentine’s Day I go in then to the hospital for two MRIs one for a brain study for my white brain matter which is deteriorating rapidly but I don’t know what kind of white brain matter disease that I’m developing and the doctor told me my neurologist told me that I do have that going on MRI is going to be to find out what kind of damage what possible is going on and to find out exactly what type of brain matter disease that I may have and I’m also having a flow study done to see whether or not I have any leaks in my spine neck and or in my head so I got all that going on don’t know what I’m gonna do medication wise because I also take a myriad of medication for borderline personality disorder bipolar to PTSD generalized anxiety disorder major depressive disorder dissociative identity disorder now migraines so that’s a lot to deal with stressing over all of it oh yeah that definitely having anxiety oh yeah that’s going through the roof a bit every so often I get pains of fluttering in my chest does not feel good I don’t recommend it for anybody and I go later on around the 22nd or 21st of this month to see my neurologist to find out what the results are but to be an hour and an MRI I’m glad I i’m getting medication to help me with a kiss to relax during the MRI because I cannot handle loud noise or nor can I handle confined spaces for very long imagine what that’s gonna be like when it when you’re in an MRI for an hour should know how noisy those things are and how uncomfortable they can be I’ve been through enough of them so I thought I’d share that bit of information with you Jan correction Jen and I apologize about my punctuation spelling errors and all that I failed English classes they also have a learning disability included
A number of the side effects where what I had taking Topamax for migraines.
I’m interested in knowing if anyone else taking Acetazolamide noticed a change in their periods. Mine became longer and much more painful. My neurologist says it was a coincidence, but as I titrated off the Acetazolamide they got better and are back to normal now that I’m no longer on the medication. Curious if anyone else noticed this.
Same here!
i have the same thing I take 2 pills 500 mg each. how I found out by an eye doctor who thought I had a tumor in my brain and that I was going to go blind because my eye was disattaching the nerve then they sent me to Nero and got an MRI they saw a little pressure but didn't think it was not to bad then we did a lumbar puncture mine was at 21 the fluid so a little high it's under control so far
Similar story for me... Except I was having symptoms like seizures, uncontrollable eye movement, vision loss & temporary blindness, dizziness, nausea, pressure on my right ear & both eyes but mostly my right, stiffness in my neck & back. My pressure was 31.
I find water never helps when I have a dry mouth, it helps for 2 seconds while the water is in my mouth but then dry mouth comes straight back :(
Chapstick is longer lasting for me, fools me into thinking things are OK 😋
I got acidosis and very fast, like the first week on it. I just couldn't eat because I was so ill.
what do you think about 5x 500mg
Ask your Dr. I'm a youtuber
I was given diamox as well for my csf leak symptoms
Oh yeah? Has it helped you?
Post epidural spinal headaches are miserable. I thought vomiting with migraines was bad. The headache was so bad I was given narcotics to get through it.
That must have been awful 😢
Cesarean sections and the one that I had done for my spine was the worst. It diagnosed my scoliosis but it was horrible.
If you have dry mouth make sure you brush your teeth with a fluoride toothpaste
500 mg twice a day
Diamox made me sick as s*** both mentally and physically.
Agh, that stinks, sorry. It was a gem for me until it wasn't!
@@MommingwithMigraine my neurologist prescribed me methazolamide today. Hopefully it works.
Yoy want to be careful with seeds. Some seeds contain cyanide compounds.
Disclaimer: Do NOT eat the apple seeds.
wow. I'm really concerned about the entire content of this video. I thought body pH was tightly regulated by homeostasis. And that the foods you choose to eat rarely effect blood pH. I understand recommending some diet changes isn't inherently harmful, but the suggestion that you can change the way your body regulates itself might be. This feels like pseudoscience.
Blood is highly buffered, is not likely to change from a healthy diet. Eating fruits & veggies & balanced electrolytes + lowering excess sugar & processed foods is not harmful advice to be worried about 💜
I have a muscle disease that is caused by a mutation that is autosomal recessive meaning both parents have to have the share the same mutation on the chromosome clcn1 that effects my muscle chloride channels and potassium triggers my muscles to trigger the myotonia along with panic attacks, cold 🥶 and stress,I have had kidney stones but no more occurrences ever since I quit eating blueberries 🫐 it must be an enzyme thing, and I have high pressure in my eyes 👀 I have a lot of brain fog,migraine headaches, ringing in the ears and motion sickness, and I get very weak, do you think these medications that you have here might help me by helping my mitochondria and ATP, gain more energy? I have had my muscle disease all my life and I’m now 60 and have 4 children!