IIH + No More Brain Pressure Medication // My pseudotumor cerebri story continues...
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- Опубликовано: 8 сен 2022
- Welcome back, it's been a minute! Last we talked, I was doing well because of a medication. Well, not anymore! But on the bright side, you can finally see my CSF leak on camera! Or at least, what we suspect is a CSF leak, secondary to my high cranial pressure.
I have a condition called idiopathic intracranial hypertension (IIH), or pseudotumor cerebri, which means I have high cranial pressure. I was able to manage my cranial pressure with diamox, so without diamox. I had to discontinue diamox due to side effects. Now, my pressure is high again, so my nasal CSF leak is back (again, all technically conjecture until we are able to test a sample of the nasal fluid drainage).
As far as POTS goes, it's still dramatically improved. I'm managing symptoms of POTS without salt loading! I'm on supplements and lifestyle changes to manage my POTS, no prescriptions. POTS no longer controls my life thanks to Dr. Driscoll at the POTS Care Clinic.
If you're interested in POTS Care for yourself:
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NEW HERE? The LATEST: My Spinal CSF Leak Evaluation (late 2022)
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SNIPPETS FROM MY PSEUDOTUMOR CEREBRI STORY (2021)
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○ 48-hour Flat Test Vlog: • VLOG + TIPS: The 48-ho...
○ My NEW IIH Diagnosis: • I was MISDIAGNOSED // ...
○ IIH Symptoms my Neurologists Missed: • Pseudotumor Cerebri SY...
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○ At-home Tilt Table Test: • Doing an at-home TILT ...
○ My POTS Episode Explained: • Play-by-Play of a POTS...
○ POTS & Spinal CSF Leaks: • POTS and Spinal CSF Le...
○ Buddy’s POTS Tasks: • POTS SERVICE DOG // 4 ...
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○ What Fainting Feels Like: • What Does FAINTING Fee...
○ IIH Symptoms that were Missed: • Pseudotumor Cerebri SY...
○ POTS Care Package Unboxing: • Full POTS Care Package...
○ POTS Care Q&A- part 1:: • POTS CARE Q & A // Dys...
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NOTE: Though I talk about medical topics, nothing on my channel is meant as medical advice (for all statements, past or future). I am a patient sharing my personal experiences, but I am not a doctor nor am I medically trained. My channel is for entertainment and community only.
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Can you believe all of this was brushed this off as "Positional Allergies" with a dash of anxiety...?!!! 😬
Whaaaaat???? Smh 🤦🏽♀️
Yeah I can believe it lol. How many times have you been told you're just mentally ill? You need to start listening...
That was my first thought... Lol.. HONEY
unfortunately, I can totally believe it as someone who has tried to navigate our broken healthcare system. 🙄
@@cloest-jean6956 HONNEEEEYYYYYYY 😆
I've been following you for AGES, but about 2 months ago I was also diagnosed with IIH. Its rough. Diamox is ROUGH. Weight loss is TOUGH. But I'm doing it and trying my best to make this all happen. What a nightmare.
So happy to see you. Missed you a lot!
I’m excited to see you back, however often that may be. 💕
I'm so glad you are feeling better.
So glad to have you back, I was wondering how you were doing. Best of luck luck getting back into filming and social media while also juggling your health and family responsibilities. Those come first so don’t feel obligated to update us until you’re able and wanting to.
Happy to see you upload! I've been watching your videos, especially the ones of your service dog! I am all too familiar with doctors brushing things off as something else (took my mom going from doctor to doctor with me for 5 years before they accidentally discovered my pituitary tumor!).
I hope all goes well. Sending you spoons and love!
This was an amazing come back video and so glad you decided to post it after all!!! The way you described your POTS symptoms after standing for 15 minutes is exactly how I get. So great to see you again. Stay safe, happy and healthy.
Jen! You’re back ❤️
I missed your videos. I'm glad you're doing well and can't wait to see where this journey takes you.
Thanks so much, and thanks for being here 🙏 😊
Thought of you today as just had second of my non-migraine headaches this week, and one of the possible causes listed is CSF pressure (low not high - but in reality they just don't know, it just isn't studied enough, sigh). On the upside also started Ajovy this week.
Thought the standing in this video looked a little odd at first, but now I see you are standing because you CAN!!!! Go for it.
You are still looking bright eyed and fabulous, hope you get that pressure under control as you need to give that brain some love too.
Good to see you back Jen.
Thanks! 😊
I`m soo happy you are getting back! :D I understand you needed the break, but when I found your account, I have seen many of your videoes and learned so much. I can`t belive some do think this is allergies or mentally stuff, ofcourse it is something more ! :O I belived that quickly, but here you are. And you are getting belived more and more, I hope you find your way
I think of you every time I have a migraine as your words are somehow very comforting. Although, I currently have another coming on AAAARRRGGGHHH!!! I was starting to wonder if there was a reason you weren't on here. Sending Spoonie Hugs and Love ( ( ( x 😊 x ) ) ) 💜
Your story is amazing. I was most interested in the nasal drainage. (I’ve had a similar experience, except the only time I would have drainage is when I had to lean forward for very long.)
Please forgive this long post, but you may relate to some of it.
I am 70 years old and I started having severe headaches when I was a teenager. I also had erratic periods with severe pain and cramping.
I had one child by c-section in 1973, several abdominal surgeries for ovarian cysts and eventually a complete hysterectomy at age 25 due to endometriosis.(All this time with my severe headaches, trying to work , driving a school bus, raising my daughter and being a wife.)
I saw several neurologists before I was told I might have IIH. The only way they could diagnose IIH, at that time, was to have an LP/spinal tap which I finally agreed to.
I was still trying to work, so I would have an LP about every 8-12 weeks so I could manage my pain and still continue to drive the bus. In 2008, I was diagnosed with fibromyalgia.
In 2016 I retired after a total of 26 years driving the bus. I loved my passengers very much, some more than others. LOL But I had to find a better way to treat my headaches and get off the Diamox and have a little enjoyment in my life.
I had cataract surgery on both eyes in July of 2019 and a vp shunt placed in 2021. I was still on the Diamox until this past summer. I also still have migraines that are controlled with AJOVY injections monthly. I can tell when my headaches are migraine or increased pressure. (My pressure still fluctuates a little when the weather barometer is 30 or above.)
It only took me 50 years to be able to finally know how it feels to have more than 3 days a week without a headache. It’s amazing to me. I am so thankful that I finally have relief from daily headaches of some kind or the other.
I believe God is not finished with me yet. I am planning a solo trip to visit my sister soon.
Please don’t wait too long before you find a better way to treat your headaches. You deserve a better way to live your life, raise your girls and be the healthy woman your family needs.
Many blessings for you and your family.
Ps: I went beach combing this past weekend. NO nasal drainage while bending over. Praise the Lord!
So happy to see you back and standing for such a long time. Congrats!
It is so hard when old symptoms return, but I am hopeful that you will continue to improve.
After hearing about B1 for Pots months ago, I gave it a try. My pots has vastly improved since I’ve been on it. It wasn’t an immediate change, but a gradual improvement over time. Still have bad days occasionally, but the flares don’t last as long. Also, I have been able to go outside in the evenings through the summer this year, which is something I could not do last year. It’s so hot here in GA! Anyway, I would encourage other pots patients to investigate it.
You and your family remain in my prayers. God bless!
This is something I came across lately and trying to learn more and then start taking b1 just to see if it helps me
It’s nice to see you again!
🎉 so sweet! Good to be back!
So glad you’re back!!! 💕
Aww thank you!! Good to be here! 🙌
Hey Jen! Its wonderful to see you again I wanted to update you on my IIH journey. I got my lumbar shunt back in March! Woohooo! I had to get it adjusted a couple of times but it has been a God send. I was still for some reason symptomatic on diamox even though my pressure was lowered. I still have occasional low tier high pressure headaches as there was no "perfect setting" for me but I am so much improved. I have my life back. Thank you so much for your part in helping me get this taken care of. You helped with discovery and pushing for what I knew I needed with the doctors.
Yaaaaayyy!!! Thank you for the update. I'm honored to have helped at all in this, wow. Congratulations on getting your life back!! 👏 YOU DID THAT 😭
Did you name your shunt?
I was leaking out my nose too. The more i watch the more we have in common.
Welcome back.
I found you first by looking for service dog info since I’m about to pick up my first trained SD (gluten detection) and your older videos were so helpful (thanks!!), then started scrolling up through your newer videos and seeing oh, she has POTS like me… oh, and IIH like me… oh she has a CSF leak… like me. This stuff all travels in packs.
I’ve been dealing with this, diagnosed, a lot longer than you have so maybe I can help you some in return.
Intracranial hypertension can be a short-term disorder or it can be a lifelong tendency. I had it kicked off by a fall, and then months of concussion symptoms with no concussion, then just 1 week of Diamox made it go away, for what I thought would be forever. Instead… I ended up on IVIG for my neurological autoimmune disorder, which was diagnosed bc my doctor went looking for a reason to try me on IVIG for my dysautonomia.
Second day of infusions (you do 2 in a row), I heard a pop and a river noise in my ear. I got a cranial CSF leak. So we spaced out the IVIG infusions more and I took Diamox the night before and after. I was fine.
Then it got worse.
Then I got better again (found out accidentally I have celiac disease and did you know it could drive ICP? we didn’t, but turns out there is a published case study). GF diet let me quit Diamox again except for IVIG times.
Then it came back again. Why? Apparently because I was super anemic. Anemia can drive ICP… there are case studies. Fixing my iron let me quit Diamox again… for a little while.
I had anaphylaxis to a drug. Ended up in the ER, got injected steroids in the ambulance. Ended up in the ER again the next day because I had a biphasic reaction. Ended up on a week of prednisone.
Which made me psycho, and then afterwards I felt like I got rammed by a freight train, because somehow all that caused a CSF leak in my spine. I think a combination of the first allergic reaction, a secondary allergic reaction to a filler ingredient in the steroid pills, and then steroid weakening of tissues.
I got better, I got worse, after more anaphylaxis, and then when I cut out my allergens, I got much worse… because they had been causing higher CSF production as a reaction and that was obscuring my leak.
Finally I got a blood patch and am now in mild rebound high pressure.
So my ICP is driven by autoimmunity (celiac), iron deficiency, and allergy/MCAS triggers. And steroids.
And sealing long-term leaks!
(And yes, I have EDS!)
Because the body starts to overproduce CSF to compensate for the leak. It’s important to treat a leak as soon as possible, to prevent this from snowballing. And unfortunately to treat a spontaneous leak, pressure must get managed first.
It’s gonna be impossible to eliminate all my triggers for life. My rebound HP is getting slowly better (I take just half to 3/4 a pill each night and occasionally 1/4 in the afternoon) but chances are I’ll be dealing with this off and on for life.
Most of us probably will.
My story above takes place over 7 years, about 3-4 of which I spent without taking daily Diamox.
Looking back, I even think I had a small leak in my sinus, like you, since childhood, which I was also told was just rhinorrhea. I used to drip when I’d bend over to tie my shoes ever since I was a kid, and I also dripped from the nose during the struggle with IVIG pressure. It went away on Diamox and stayed gone when my pressure was normal without drugs. So really… a lifetime problem.
There’s good news, though. There are alternatives to Diamox, especially if you don’t need a lot of it. Some people take unusual diuretics like spironolactone. Some can manage it totally with herbal supplements like dandelion tea. Some take methazolamide, a friend of mine who’s very sensitive to everything says she can tolerate that and that only. I don’t recommend Topamax. I stick with Diamox for now because it’s a known quantity and I can tolerate it fine.
I know Dr Driscoll was able to (permanently?) solve her and her kids’ IIH problems, at least since the last time I checked up on her advice, but from my experience and listening to folks in the support groups, I’m not sure how common that is. Alas. Her early writing on The Driscoll Theory and especially that tip about managing blood co2 when on Diamox has really made life bearable for me so I have the utmost respect for her, don’t think that was a criticism.
I hope you figure out a way to manage your pressure soon so you can treat your leak and also not be miserable doing so!
I found your channel a month or 2 back when researching my own issues after constant dismissal from my doctors. No-one seems to take me serious when I tell them what I'm experiencing. Some of that is because its hard to explain all the little parts when you're sitting there at the doc's office in the hotseat. I literally just finished getting caught up through years of your videos today, so it was cool to see an update. I'm hoping to take what I've learned from you and present a more structured layout of my symptoms to my doctor's appointment next week. It's only a GP but maybe she'll understand better and help me find a direction. Your videos have truly validated that what I'm feeling isn't normal, and has motivated me to keep seeking help even though I've about given up on the medical system. Thanks for all you do and good luck on your continued recovery!
i always have make sure to write symptoms down, sometimes even when they happend and the possible reason, then i slip my doctor my notes and we look at them together. has helped me loads.. maybe because i'm anxious and have adhd so i constantly forget stuff haha
@@anticherries Thanks for your comment Jule. Sadly, I did just that very thing to have the doctor hand it back to me within 10 seconds and going back to the questions that she was concerned about. Total dismissal, I was devastated. I might have progress being made now though.. hopefully.
welcome back!
Thank you friend!
Going through the same thing… thanks for sharing your story.
Sorry to hear that. I'm rooting for you friend
I am so grateful i found your videos Its giving me hope.I've been suffering from migraine for yearss after a car accident and i have the loudest pulsatile tinnitus. I have 90% of the symptoms of IIH and i strongly believe i have it. I am about to begin my journey to a proper diagnosis that is more specific than 'chronic migraine' but im so terrified that i am going to die before a diagnosis. Currently i've had a headache that has not shifted for 4 days. nothing new. But this cant be a normal existence. It just cant.
Welcome back!! It is so wonderful to hear from you again, you were missed.😃
I don't have Instagram so I'll patiently wait for your update on that project you are working on whenever you are ready to do that. Your health should always come first!🥰
I have IG but I've missed it coz stories don't stay up long. Only have to be away 1 night with no signal or be ill and go straight to bed and you've missed it.
I don’t know if you want to hear something like this but I feel so bad for you poor thing I didn’t know it was so bad that it could stream out and just from a little normal movement doctors suck and don’t know everything just because they have a degree also you saved me from the emergency room because one of your videos way back gave me the idea to get a blood sugar tester because my nose does leak a lot but turns out that’s fine and the near fainting episodes I was having for about a year turned out to be blood sugar so i bought the tester for one thing and ended up actually needing it for a different thing long term ❤
Hiii nice to see you again and hear your updates!
You're too sweet, thanks for the welcome!
I finally got answers about my migraines and I'm happy I finally got answers about my post concussion Syndrome the severity is equal to chronic migraine and I'm so happy to have answers
Glad to have you back!
Welcome back!
I missed watching your videos on RUclips.
I am looking into what is going on with my neck, as it is causing me never stopping headache.
Looking at getting a better pillow cos the massage and chiropractor doesn't seem to fix it if I then sleep in a bad position.
And when I was watching RUclips videos to try to find out what could be wrong I came across cervical instability on caring medical RUclips chanel and how it can effect the vagus nerve.
And how it's more common in females because we are more flexible which is due to lower testosterone higher estrogen levels.
And how the vagus nerve not working properly can cause high cranial pressure and pots among other things.
Anyway I thought you might find that interesting.
I'm glad you are back on RUclips.
I hope you get better soon 🌻
I'm 100000% a good suspect to be examined for CCI, but I haven't read up on it much yet. Thank you for the nudge! I hope your new pillow situation works out. I sleep with a soft cervical collar on (I linked it in a previous video), might help you too? In case you've never heard of it 🤷🏼♀️ huge difference for me
Thanks for the tip I will definitely try a soft cervical collar.
So great to see you here again! My second baby was super attached, too. With all of the ringing and whooshing sounds you once described, have you ever been told you had Meniere’s? That’s one of my working diagnoses right now, but I often wonder if it’s something else.
Take care! 💜😊
It's been mentioned fleetingly but I haven't looked hard 😕 do let me know what ends up happening for you!
@@MommingwithMigraine I will! I sometimes think Meniere’s is what they tell you when they don’t know what to do with you anymore. 😂
@@michl6688 😆🤣🤣
I swear, I really swear you tap into my brain with what you're experiencing as far as your health goes. I suffer migraines, and the high pressure you talk about. Just wish I could find a doctor ( doctors what a joke for a title, or a career)
Glad you're doing your best, and family are doing well. You have a covid baby. I have a covid 2 year old rescue puppy. Both come come with challenging obstacles. You continue to do your best. See you when we see you. I like the idea of going back to health, sharing, what works, what don't works. Stay strong 💪👍👍👍👍👍👍👍👍👍👍👍👍👍👍💖
Hello, how are you doing? It's nice to see someone that has the same health condition that I do. I was diagnosed with IIH in March 2019 and I'm taking diamox but since I've been taking diamox, I've developed a low platelet problem but because of having the low platelets, I've been experiencing petichie on my right arm. It's actual blood spots that come up to the surface of my skin, as though I was taking blood thinners, which I'm not taking. I have days where I feel light headed and some days my nose wants to drip. I was prescribed Levocetirizine from a ENT specialist to help with my nose dripping. But sometimes my nose still drips even though I take my nose medicine everyday. The ENT specialist only told me that I was having post nasal drip. I'm so glad that you said that it was CSF because I had a feeling that my nose was dripping spinal fluid. I subscribed to you but please keep me updated on your journey with IIH. Take care and God bless you.
❤🙏🏻😀
Oooh HI! So glad youre here. You sound like me 💜 Watch my fascial counterstrain video for the latest on IIH. It's so managed with just this therapy alone.
@@MommingwithMigraine Hi! Okay I sure will. ❤️
I know too much about high CSF pressure. My Mom had to have a shunt. My daughter has IIH. Then I had to have a shunt put in when I was in my 50's. I needed to have a shunt years ago but I didn't have the symptoms that the Neurologists expect. I did have some issues with my left side and really bad memory issues. After seeing multiple doctors I gave up but my wife talked to my doctor and found a new Neurologist that listened. At that point I was having to use a cane to walk well. With out it I couldn't get across the road at work without dodging traffic. The doctor had me do the some tests and then sent me over for a spinal tap. My opening pressure was 35 cm. Normal is 8 to 10. They drained some of the fluid and then they tested me again and the difference was amazing. So he sent me to get a shunt. That all went well except the surgeon decided that he would just set my pressure to 8. I recommend that they start higher and take it down over time to let me body adjust. He didn't think that was needed and set it to 8. I ended up have 2 intercranial bleeds and had to have a craniotomy to remove the larger of the 2 clots. He then followed my idea and started higher and adjusted over time down to 10 cm. I've been doing real well with the shunt by my memory never improved since the pressure had been high for too long. My daughter fights with high and low pressure but they say her shunt is working. She can only work part of a week and the rest of the week she spends in bed or resting. Good luck with your journey, I hope it gets better and you can live a wonderful life.
I was just sent to a neurologist due to sudden vision loss, seeing black spots and headaches...Didn't think much of it until that doctors appt. I just went to the neurologist today and she says I possibly have IIH. I went to do research and my goodness I'm sure I have it!!! I finished school for the 3rd time last October and I'm still going over the material because my memory is so horrible. I have the ringing in my ears, my eyes and nose leaks out the blue...And the othomologist originally sent me due to one of the reasonings also being he seen a "dip" in my right eye that he said usually means pressure. I also suffered an ear infection in my right ear due to fluid being behind it. I also feel "weird" pressure laying down like my eyes are bulging out especially on my right side.
Sorry this is so long.
@@tasha9650 "IIH" can be caused from different medications. I don't remember them all but one is an Antibiotic for acne. You get off the medication and the issues go away. I hope it's something like that for you. My daughter has it and had to have a shunt put in place. She still deals with pressure issues but it's much better. My daughter worked at the "IIH" registry at OHSU in Portland Oregon. They have a lot of good information on the issue.
The only way to know for sure is to get a spinal tap where they can measure the pressure. Sounds scary but if you get a x-ray guided spinal tap it's much better. They can move your body around until they find an easy path for the needle. I had one of those and it was great. Make sure you push for that. Depending on where you live you may have to travel to get it.
Good Luck with your journey. I hope and pray it's a smooth one.
The only way to know for sure
You were missed. Glad you are back 😀
So first off I have IH. I have a shunt that hasn't been keeping my pressure steady. I've been running low instead. But what I wanted to say was that I accidently lowered my pressure, by donating plasma. The first time I donated the donation failed but I went from high pressure to normal. Did not make the connection. So donated again (over a week later) and went from normal to low. I can't say for sure that it was the cause but it does make some sense as it is forcing your body to replenish the liquid plasma which will cause at least an initial dehydration event. Which is the point of diamox and the other IH medication. My pressure has been low since, but that is my current fight with my shunt or possible leak, and I'm sure it would have otherwise gone back up in most people and most IHers, but I'm not sure how fast that would have happened.
Being from the medical field I try not to say 'oh look here I found a something' (can't even write cure in that quotations...just no). At most if this helped it would be another Band-Aid like diamox. But as donating plasma is … relatively harmless (the anticoagulant can cause low calcium for up to a day) that a lot of people do, I do think it is worth mentioning so maybe someone else can see if it has any effect for them.
If anyone wants to try this please be safe and don't go in with too much hope. I've both been there and know how much people will try and go though for just an ounce of relief.
I totally understand everything that you’re saying. And I totally understand when you said you are thankful to be able to stand. Don’t feel bad. Because I know from watching your videos there are days you literally cannot stand. I know a lot of people who do not have an illness take standing for granted. So if you have a good days where you can stand that’s very very good. It also it’s OK if you cannot do a lot of videos a lot of people here that’s positive totally understand your change in life with the two kids and having good and bad days of not feeling good and feeling good. But I will continue to put out good thoughts and prayers for you.
Sending you and your lovely family lots of love always.❤️❤️❤️❤️
I was diagnosed about 5 months ago after years of chronic migraines. I got a lumbar puncture which confirmed but I was told it wasn’t that high just on the border I was put on several headache medications and it worked then I was taken off and just on 2 but now their consistent back to back every day every morning and it’s so hard to drive and keep my eyes open and focus I need something to be done
28/M and living with the same condition. Only recently discovered I had this. It's so eerie that fluid can leak out through our orifices.
I tend to leak from my ears. That was my first symptoms of psudotumor, I just never notice before cause I never heard of it before. It was clear and ordorless and it was a lot and it used to drive me crazy. I told my ear dr but he brushed it off as normal, then months after I got diagnosed with pseudo tumor. I'm now connecting the dots cause I forgot I about that happening. I need to tell that symptom to my neurologist and pay attention to them just in case it's happening again. I'm new to pseudo tumor. Last year I got diagnosed but so far I had 3 relapses in a year in a half.
Glad you're able to stop the salt loading for your POTS. That (and Midodrine and Fluorinef) are dangerous with CSF leak.
The POTS medication Clonidine/Guanfacine in low nightly doses has helped my POTS a lot and has eliminated my migraines, anxiety, and insomnia.
I also take Pyridostigmine, one of the medications Dr. Driscoll recommends for POTS, which also cured my gastroparesis and intestinal dysmotility.
I was put on florinef for my pots and I have CSF leak. What makes it dangerous and why would I be prescribed this if so. If this is bad, I don't want to be on it.
@@rosalindtyner9042 CFS leak tends to cause intercranial hypotension due to reduced fluid pressure, so it can be okay for some people. It's not very good at addressing POTS, and the risk is when the CFS leak is accompanied by Ehlers Danlos syndrome. This video had to do with POTS and EDS.
Florinef boosts blood pressure by force by causing the body to retain fluid and increasing blood volume. While this can be okay for people who just have dizziness when standing (orthostatic hypotension), it does nothing to address the root cause of the tachycardia in postural orthostatic tachycardia. There are several other classes of medications that can address POTS without forcing the blood pressure up.
Florinef can be dangerous to people with Ehlers Danlos syndrome, due to people with EDS being at increased risk of blood vessel ruptures - this risk is extremely increased for those with the vascular type of EDS.
Thank you for replying, I have been going through this nearly a decade and I still don't understand it well. I feel cognitive impairment a lot. I had a genetic test for EDS but it came back negative. I really suspect that means nothing. I am not really flexible but I bruise really easy and without cause so I am just not sure.
@@rosalindtyner9042 The most common type of EDS (hypermobile) doesn't even have a genetic test, since they haven't isolated the genes that are responsible for it. At least they ruled out the 12 other types of EDS with the genetic test. You'll need to look up the Beighton Hypermobility Scale to see what they check. There are good videos on here that show all of the criteria necessary to be diagnosed with hypermobile type EDS. Look up Izzy Kornblau on here.
Unfortunately, most doctors are clueless when it comes to EDS - especially since all 13 types were reclassified in 2017.
Appreciate your channel
Thank you kindly 🙏
I know I’m late to this but I really wanted to message as I’ve got IIH and also CSF leak! I’ve had it for around 7 years now with the doctors not wanting to treat anything as my “body is doing its own shunt”
I’ve now been put on weight loss injections as some evidence indicates it can help lower the pressure (also via weight loss)
I just wanted to see if they had even given you any indication of treatment for the leak itself? It’s so scary 😢
My I saw my neurologist yesterday for my chronic migraine/headaches and he thinks that I might have idiopathic intracranial hypertension and is sending me to get an MRI.
Hey Jen, I was recently diagnosed with a suspect Pseudo Tumor Cerebri, I didn’t responded well to Diamox and my neurologist failed the Lombard puncture .. (I have scoliosis and my doctor din’t think to do an x-Rai to check how really my spine looked like so he failed after I don’t know how many times failing to try to do it and with no anesthesia) so,In the end, my question is what life style improvements are you doing? In the mean time i’m looking for a new doctor because the actual one is not actually listening me and pay attention to all my symptoms and all my pathology
They're checking me for it too... and I have scoliosis also... Ill make sure to mention it to them when they do my spinal tap, thank you. That is what you mean, right?
@@tasha9650 yes
I had brain surgery in March to repair a CSF leak due to IIH. I started leaking again and the neurologist wants to do another brain surgery right before Christmas. I don’t want to do it. It’s very frustrating because it’s like they (doctors) don’t really know how to treat it with invasive surgery. I have changed my diet and lost 30lbs so far. They have never prescribed any medication for this.
I have IIH and how I found out was I noticed vision loss. Just a heads up with high pressure it can do more damage to your eye sight. I take dia.. pills to. My pressure gets high. It feels like I have a major ear infection. The ringing in the ears is awful. I always keep some noise going, like a radio, or a podcast. Also when I bend over my nose drips clear fluids to. I have to take motion sickness pills in the morning. If I don't my speech is so bad no body can understand stand me. It's like in my head it sounds good coming out but people hear different words. I guess when ur pressure is high it's like ur brain is on a boat, but when I take motion sickness medicine it calms the waters.
I’ve been complaining for years of debilitating headaches and all the other IIH symptoms and my doctor never did any testing. I was finally diagnosed in January after seeing my optometrist for my yearly eye exam and him finding optic nerve swelling and then referring me to several specialists. I never thought anything about my blurred vision, just thought it was normal eye sight changes. Just shows how important a simple yearly eye exam could be!
I had 14 months of leaking fluid and finally had a repair operation last October I did several videos of my journey
That drip happens to me also.
Try dandelion tea to see if it helps with high pressure.
It's kinda weird how fast you are talking right now. And your voice also seem different. But it's a good weird ! I'm happy for you to have gained back some ability/abilities.
That fast talking start is normal Jen I think, not stressed, no brain fog. Certainly if you watch some of the early videos you see that Jen on the better days.
Hi, I just started watching as I have similar symptoms. I heard you say in one of your videos that you had documented one of your " mini seizure episodes" .. I can't find it. What's that video called?
2 come to mind - "seeing my own migraine for the first time" and "neurocardiogenic syncope" both have zoned out convulsive episodes I believe
@@MommingwithMigraine thank you so much! Have a good one !
I do that as well. My doctor said it’s an emergency pressure release valve.
HIGHLY INTERESTED did they tell you the name??
@@MommingwithMigraine that’s funny, no, they did not! I have pseudo tumor cerebral too. That was one of my symptoms.
@@kdkay4039 I wonder if it's related to the empty Sella that's often found in IIH. Maybe it is sella juice? Are you still in contact? Do you think you could ask?
High dose Thiamine has the same effect as Diamox. Dr. Derrick Lonsdale 's article Hiding in Plain Sight explains High Dose Thiamine benefits. Pregnancy depletes thiamine and clingy baby is a symptom of Thiamine insufficiency in children.
Loopy Lori! Maybe you're not loopy! Thank you, I'll look into this and ask about it.
Mine isn’t a headache at all it’s pulsating pressure.
Owwwwww 😮💨 for me, pulsing is high pressure
@@MommingwithMigraine is it a headache?
I just wondering how you where doing??? I'll wait to watch the video for an update.
Heyyy!! I'm doing way better than a year ago but worse than 3 months ago. Overall, it's positive. Keeping hope!
Omg hi Jennifer I have the same thing. Im Danna. Do you have support group.
Hi Danna! I think I've heard from you before, right?? Hi again!! I'm sorry you have this 😔 Yes, I have a great support group in my Patreon and another in my local community. Don't know what I'd do without them ❤️ I hope you feel supported too.
Did you take diamox during pregnancy?
I did. At very low dose and only at the end of pregnancy (after limbs had developed because the main risks to the baby are teratogenic). What tipped us toward taking it is I had so many spots in my vision that we were taking a risk of vision loss if I did NOT take it. I discontinued within a year.
1:40 Good thing it doesn't come out on the wrong side. 😋😋
LOL
DUKE you May have a cranial CSF leak
not IIH .....
We're pretty sure I am leaking somewhere, but we don't know where. Cranial is very possible.
How bout dog training?
If you are bothered by water-like fluid coming out of someone's nose you should probably not be watching You Tube at all.
Dropping WISDOM
I bent over to move my Guinea pig cage the other day and the same thing happened. Ran out my nose.