Pseudotumor Cerebri | Ashley's Story
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- Опубликовано: 12 дек 2012
- After visiting 30+ physicians, Ashley was diagnosed with the rare condition known as pseudotumor cerebri. She and her family turned to the experts at Johns Hopkins who worked as a team to implant a stent, a new approach to treating this condition that is typically treated with a shunt. Find out more about our experts at www.hopkinsmedicine.org/neuro
For appointments, Maryland residents should call 410-550-1470, and out-of-state residents should contact 1-855-884-6754. 
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To anyone reading this and being diagnosed, don’t lose hope and know that things can get better. I was diagnosed with this on November 2019 after my eye doctor noticed I had a swollen optic nerve. I was lucky: I didn’t have headaches but sometimes during the day I would lose my peripheral eyesight for a couple of second. I’ve done an MRI (they discovered that my cerebellar tonsils aren’t exactly as they should be which it’s pretty common for those having PC) and after being diagnosed with pseudo tumor, I’ve been told to take diuretics . After taking the first pill my momentary visual loss disappeared and never came back. 3 months afterwards I was told that I had improved so much that I didn’t need any kind of medications anymore. Things went well, I know it’s not the case for anyone, unfortunately. Hope this helped someone being less scared and more hopeful
Yep, I have swollen optic nerve. That's how this progressed. I hate the blood pressure/heartbeat sounds in your head, the vision issues. I have also been dx'd with migraine with Aura & trigeminal autonomous cephalgia.
Omg I have low lying cerebellar tonsils as well!!!! I also have extra, abnormally long cervical ribs & perineural cysts at my c7-t1,
What diuretic are you on?
@@Labyrinthine_Complexities I was on Diamox for 2 months
Alessia... did you have a merina IUD implant by chance?
I guess I'm one of the lucky few that caught it very early. My symptoms just were severe headaches with vomiting, but not the vision lost. I got the fluid drained and put in diuretics. It hasn't come back, and it has been 8 years.
+Luisdanieltv Thank you for sharing. That gives me hope. I was diagnosed on my birthday in May and have been feeling a bit lost with this as my symptoms are not normal and were just a few minor headaches and some brief vision fades. My doctors always seem a bit weird that my symptoms are not worse compared to my blurred disk margins. It is nice to know that there is something to hope for :-)
I caught mine early too they're just monitoring me I also lost some weight and that helped as well. How are you doing now?
Luisdanieltv I caught mine kinda early and it got drained out and I was fine but it has come back every year so far 3times now and I need to find a way to get rid of it.
He, scrub. I got mine caught before I even developed any symptoms while at a routine eye exam. I can't believe how lucky I must be. Seruously.
I was caught early it had started to effect my vision however draining it improved it luckily. I got put on acetazolamide/diamox which started effecting my kidneys. So just getting monitored now but it's increasing again according to my eye tests from the pressure on my optic nerve
We need more awareness. I have been diagnosed since 2008 and I'm fighting hard to keep what freedoms I have left. So many people are left with the wrong answers, trouble with medication, no jobs, blindness, not being able to work, etc. This disease is chronic, rare, and destructive. We all need help and fast.
Vanessa G You are so right about this. I’ve suffered for 6yrs lost all peripheral vision in my right eye and 30% of vision in my left. I had to leave my job because of this disease. I wish this stent was an option given before I underwent the LP Shunt Surgery which I am currently 6 days in the healing process from.
@@bojukakt222 Hey how are you? As of now I am still suffering with a lot of symptoms even with the shunt. I’ve had to have it adjusted multiple times since the surgery and undergo a second procedure to make sure there weren’t any blockages. I am currently on Disability due to the many symptoms I’ve faced with this disease as well as some other health issues I have as well. I am so sorry that you have to deal with this due to your accident and I pray for your healing.
@@bojukakt222 Thank you so much for your prayers they are greatly appreciated. Yes the pressure headaches are the worst and are a sign that you might have some fluid build up. It might be a good idea to ask you PCP to send a referral to a Neuro-Ophthalmologist to take a look at not just your brain but also you optic nerves/eyes which are a really big sign of fluid build up. One day at a time is all that we can do!!
Do you have mirena coil or other hormonal contraceptive? I believe this to be the cause for me
@shellbellhealing when I was younger ( late teens early 20s) I took the depo Provera shot for many years but stopped for many reasons and I believe this caused everything
On a early morning I woke up with severe eye pain, I work with ophthalmologists so I decided to get my eyes checked. After all the tests we noticed that my optic nerve was swollen, got sent for a MRI. I was completely scared the doctor wanted to know what was going in my brain & what was putting pressure on my optic nerves. Long story short 2 days before I was supposed to go in for the MRI I had a TIA (small stroke) got rushed to the hospital, turns out the TIA was caused by all of this 😓. Got sent for the MRI at the emergency room, later diagnosed with pseudotumor cerebri (IIH) at the age of 22!. Got a lumbar puncture with a pressure level of 38. I’ve currently lost 30lbs & doing much better 🙏🏻 GOD IS GOOD
I was diagnosed with IIH in September of 2018. It was a very severe case, with my opening pressure being greater than 55. I was losing a significant amount of vision, so I had optic nerve fenestrations in both of my eyes almost immediately after my diagnosis (for those who don't know, basically they cut a window on the sheath of your optic nerve so the fluid can drain instead of causing continual pressure on your optic nerves). I was also placed on an extremely high dose of acetazolamide/Diamox. It's now January of 2020, and I have nearly tapered off the meds completely. In fact, the plan is to no longer be taking meds within the next few weeks. Although I am living with permanent vision loss, I would say I'm a success story and that there is hope!
Are u blind?
@@bojukakt222 I have significant vision loss, but not enough to impact my daily life. I actually experienced a relapse with my condition since this comment, and lost a tad more vision, but I’m back off meds now. I work a normal job with no accommodations. I can drive - my eye doctor approved that. My vision loss sucks, but I’ve been able to adjust.
@@scorpionnurse no. I still have a good amount of vision.
@@bojukakt222 my doctors are really good! I check in with a neurologist and ophthalmologist regularly! And my primary care keeps up with it. I hope that things improve for you, and you recover quickly if you get that procedure done
@@sammibieber9266 I hope you’re still doing well and recovering! It’s comforting to know that other people have experienced the same health challenges.
This disease is debilitating. Thankfully mine is treated with medication (Diamox) and I only have very minor headaches a few times every month. Before, I couldn’t even open my eyes the headaches and pain were so bad. Multiple doctors at major university medical research hospitals looked over me saying I was fine, until a very young neurologist at a small clinic in South Dakota literally saved me. So grateful.
I also used diamox! we avoided suegery and any procedures in the head and I very slowly recoverd.
I'm crying. I know how this girl feels. This disease took everything away from me. My school, my friends, my social life, etc. I can't even count how many times I've been to the ER screaming, crying, begging for relief. I was diagnosed in January 2014 after experiencing the symptoms as early as September 2013.
how are you doing today? i HAD IT TOO IN NOVEMBER 2014 and it completely healed for me i have not had it again.
Uwineza Andersonne what was your course of treatment? I’m going through it now.
Uwineza Andersonne how were you treated?
Uwineza Andersonne how did u get your healed
I m suffering from this too..it change my world i have only 40 percent vision left
I got diagnosed with this many years ago. I’m far from obese. And so far no one has told me or made us aware of how this occurs. Especially in those who are not obese.
The other name for Pseudotumor Cerebri is Idiopathic Intracranial Hypertension. Idiopathic means without a known cause. Unfortunately, that means we don't know why this happens. I'm sorry friend. Just know you're not alone! I'm in It with you!
Another clear side effect is that she become extraordinarily beautiful, with the kind of voice that could soothe any husband or child into a state of utter complacency.
They unfortunately don't know but I can tell you Sodas and sodium makes it worse!
I was diagnosed due to side effect from medication.
Try to stay away from pharmaceuticals if you can try natural that big list of side effects can happen.
I have psuedotumor cerebri. I was diagnosed in 2007. Dr. Mogehkar is my doctor too. It was very scary in the beginning. I lost some of my vision in both eyes, had multiple spinal taps.... all before I was 30. I cried everyday!! I'm still dealing with it. And it can be very challenging when people don't understand the level of pain your in. I still have headaches... they are far more painful than any migraine. I wish there was more awareness and research.
You're in**
I have the same thing. I was diagnosed in 2011 when I was 11 years old I understand how it feels to have this as well. I also wish more people are more aware of this issue, but it's hard. A lot of people and I still deal with it as well. Bright side, there will be a good future to look forward to.
Yes sis, me too. I'm so scared and have no one to talk to about this. They think we're exaggerating our pain. :( I can't even go down escalators.
Oh my God I know I'm so late to this but you are so incredibly strong for getting multiple spinal taps. I got one and it took me like five weeks to recover and I was bed bound for one and a half of those.
Yes I was diagnosed with it 2018, it is very scary I almost lost my vision as well, after surgery my vision has become much better. How is your vision, did you receive surgery?
I'm an unusual case, I've been diagnosed with pseudotumor cerebri, though I'm a male and a young teen. (woman are 9 times more likely to get it) (plus it's around the ages of 30 and so) I've encountered many of these symptoms, especially with headaches behind my eyes. I hope everyone else with this condition makes a full recovery from it and doesn't lose any significant amount of vision :)
Same case with me bro, I'm 30 male and having double vision due to increased pressure
How you been ??
Ick, i had this my last year of highschool. It was taken care of with a few spinal taps and some diuretics, I am so glad my mom kept taking me back to the hospital and advocating for me.
I am grateful for thjs video, because so little is still known even aftet 9yrs of this illness ... I noticed back in 2017 my vision was not being corrected with regular eye doctor visits. At the time one kind optician told me see a specialist and even wrote a referral but I lost my insurance and couldn't afford it. Finally got insurance again in 2019 and it wasnt until 2021 in my birthday month I got to see a specialist, cus of covid-19 and finally last month, I was seen by Hopkins. A miracle in itself, to be seen and properly diagnosed.
I take comfort in the comments as well as this video, as she is not overweight. It's hard explaining to ppl. Reading up I see steroids can lead to this and I have had to have meds with high doses of steroids for nerve pains. I am here in the comments gleaning support, prayers and encouragement as I start my own journey to beating PTC /IIH. Grateful for my family's prayers, support and understanding. I will beat this and return to update.
I now have to take the Diamox because me results are not looking good, and I already have serious vision challenges. So I wanted to know if anyone ever developed kidney stones or the blood challenges? I was also told, severally lose weight and I feel like whilst that's a solution, it's ONE solution. As I've come to read in the comments, some get told that and left alone, when the situation worsens. I am down to 1 meal a day and the weight comes on quickly but goes off slowly, so I discovered it's more than just losing weight, there are foods that trigger PTC or spinal fluid build up. Is there anyone who has any diet recommendations that worked?
I HAVE
loving all the accents of all these doctors.
I have this same conversation had my shunt placed 2005 and im so blessed and rhankful God has blessed me to be here today
Hi I have had 2 different surgeries concerning this disease. I have gotten a stent for venous Sinus Stenting. How long did it take for you to feel normal again
I have this, and I'm actually glad that there's a video about it not trying to force that the condition is about overweight people. It's actually made me cry, I live in the UK and nobody seems to get cared for like this. I would love to be seen by someone like this about my IIH, but I don't have money to
Hey ladies, I’m late to this but I just want to say god bless all of you who had to deal with this while working, raising children and managing households, women are so strong, I am struggling to keep it together and I don’t have children and I’m blessed to not have to work, any tips would be so greatly appreciated
Hello... Did you have a Merina IUD implant by chance?
@@terrirogers2281 I had the copper IUD in for a little over a year and I just found this issue on google so I wanted to look it up here on RUclips. I've been having vision problems/eye floaters and constant ringing in my ears and my head felt so heavy right before I got my IUD taken out. I've been dealing with pressure headaches for a few months now, now I think I found out what the heck is going on! Months of ER visits and Dr visits. There's no way at 21 years old I'm dealing with vision problems, fuzzy hearing constantly and a stiff neck for about 5 months
@@annmolly8244 PLEASE GET THAT OUT OF YOUR BODY IMMEDIATELY. YOU DONT WANT TO BE ANOTHER STATISTIC. I ALMOST FEEL LIKE THIS IS ON PURPOSE. MAYBE BIRTH CONTROL IS THE SAME THING AS ABORTIONS TO THESE NUTS WHO PLAY WITH OUR LIVES FOR MONEY.
@@annmolly8244 mine started when I was 27 and had a small toddler. Pseudotumor cerebri is (if I remember correctly) most common in women of child bearing age. I'd recommend seeing an optometrist and neurologist. Those sound like my exact symptoms I had. The pressure in my neck/base of head tipped one of the specialists off to a vascular issue, they found stenosis, placed a stent and all my symptoms went away. Best of luck to you, I hope they get you all better! It's hard to get through but very possible. I had to focus on my little one to get through the whole ordeal
@@VividVerse thank you, I still wake up with head aches almost every morning some mornings I get lucky and feel better, but every day by the evening time I start to feel the pressure building just literally feels like fluid/pressure in my neck going up to my head especially at the base of my head and then my frontal lobes I literally can't focus once I start to have the pressure in the front. Now I am 8 weeks pregnant I just found out how far along I am yesterday ever since I found out I'm pregnant a few weeks ago I'm worried if I'll be fine through the whole pregnancy
Unfortunately there aren't many doctors that know much about the condition. I don't blame them bc the condition is so rare.
The best thing in my opinion one can do is try to find patterns, watch what you're eating, finding triggers. Having my IUD removed helped ME tremendously!
I still struggle with PTC, but not nearly as severe. My opening pressure has been the same with both Lumbar Punctures which is interesting.
Just listen to your body, no one knows how you feel, it's important to be vocal to the doctors you see. i was in the ER last week and was told my previous O.P. of 34 was nothing, and that he usually sees people with O.P.s of "56"
I just looked at him (knowing anything over 20 is not normal) & asked to see the Neuro Radiologist to get an L.P. luckily they fit me in.
Needless to say it was 34 again, & the Neuro Radiologist had a word with that ER Doctor. It's a struggle but if you can learn how to manage it, I believe that's the key!
& I do not recommend IUD's!
***** No. Some cases are reversible like mine. I had optic nerve Fenstration to drain the CSF from behind my eyes to save my vision. I've been in remission since the surgery.
Almost a year.
I never took medecine. Has a bunch of not so great side effects.
Not everyone has IH that's caused by the same thing. She needed a STINT, some need diuretics, some need eye surgery & lastly more invasive SHUNTS.
I had the Merina IUD, that's what caused my IH.
❤
***** Yeah, doctors don't know much about it. More funding & studies need to be done. Typically a shunt is the last resort
dangitalyssa J my daughter was diagnosed with this condition last year and with her what triggered it was a sinus infection/flu..one year after actually this past weekend she was back at the hospital getting a spinal tap also started with her having the flu and sinus pressure..
How long after you took your Mirena did the symptoms resolve?
@@eryarre4323 this is exactly what happened to me back in 2013. i had to quit my job, sell my house and move back home with my parents. my life has changed, i'm 34 with my Master's degree and now i'm a brain fog mess. did your daughter have the gardisil shot or was switching birth control around this time? thats the only other thing besides one horrible flu that triggered my first symptoms - good luck, i feel awful most days and my poor 60 year old mother is constantly researching how to "cure" me - we have been to the mayo clinic and they said there's nothing to do. i also have now been diagnosed with fibromyalgia so its a cluster-fudge. good luck
I know how she feels, it all began to happen to me at 13 and ruined my life, my diagnosis changed every 4 months until I finally got to this diagnosis. It was the scariest thing I’ve ever experienced. It’s 3 years later and whilst nothing has improved I’ve learned to managed. Im hoping not to get a shunt. Even if the medication I’m taking isn’t working. Crossing my fingers
I just found out I have this. I'm already getting vision loss, but my doctor said I'm on the right track to getting it resolved.
What have you been doing?
Did you resolve it or not?
Me too! Good luck!
I am a couple days away from being 14 and was diagnosed when I was 11 I have had migraines where all I do is sleep and where I can barely stand all I want to do is scream. I have had many rumors spread about me and that just makes it worse. They tell the whole school that I'm getting surgery when really I just have the flu. I have had one spinal tap to relieve pressure it made me throw up over six times a day and I became dehydrated I couldn't standup for over 10 seconds without having a migraine and getting light headed. I am now feeling much better and only have around 4 migraines a week a lot less than before.
Thanks for sharing this!!!
We are on the same boat. The same thing is happening to me, I lost my insurance and now I'm starting to have vision loss. This is not something to take lightly. I thought mine would go away but now it has gotten worse.
I have this as well. I was diagnosed September 2019 and was put on diamox. It saved my vision and I went 4 months without medication and any issues before it came back. I go to Wake Forest Baptist Health. They are a leading facility in the treatment of IIH like Johns Hopkins. If you can travel, it’s totally worth it!
I just had an angiogram and found out my left transverse sinus is aplastic (it failed to develop normally) and my right venous sinuses are large and my blood drains through the right side. I also have stenosis on the right side which is the cause of my increased pressure. I will be undergoing stent surgery soon and I hope it helps.
Good luck to everyone out there going through this too!
Did you have PND other sinus problems? What about fullness in your ears? I had inexplicable fullness(clog) in Lt ear for the last 4+ yrs and 2 ENTs couldn't find anything. They told me to take flonase and use a eustachi...less than a month ago I was diagnosed with PTC and had a LP last week. The first thing I noticed was I could hear almost normally through my ear for the 1st time in years, then no headache. 5 days later the pressure started again and the ear filling a bit...I hope your procedure is successful!!
@@jennidefrancesco7845 No PND but I have fullness in my ears. I get airplaine ear when I fly on airplanes. I also get sinus infections because i have a deviated septum (I think thats what its called)
Unfortunately I couldnt get surgery. Surgeon said my intraveinous pressures looked normal after he did a 2nd angiogram. So Im just on medication.
I was just diagnosed with this a few months ago, I have vision loss, blurry vision, constant headaches and migraines, pain behind the eyes, dizziness etc. I’ve been having these symptoms for over ten years with no answers and thankfully FINALLY an amazing eye doctor found out I have this condition. Going to get a stunt put in, in two months!
Erin Ivins how are you doing now?
salman all the way I’m doing pretty good. I had a spinal tap and now they are trying to monitor my levels and trying some new medications to see if my symptoms improve before trying surgery 😊
Erin Ivins thats great , i wish you a good luck for it.
Any new updates Erin?
@@highwayxj9397 I’ve been on acetazolamide for about a year now. My pressure has gone up quite a bit. They are switching me over to a different medication that may help better. My vision is slowly declining, thankfully not super rapidly. My neurologist informed me that within 6 months of being on these meds if my pressure doesn’t go down I’ll have to have brain surgery to get a shunt put in. So I have my fingers crossed these ones work better. Thank you for asking! 😊
Very rare case for me being a male. Losing weight seems to be the only answer to my problem and seems to have worked. The second I eat a fatty food the symptoms return sometimes mild, sometimes with a vengeance. If you are obese and suspect iih is causing you such pain and discomfort, I absolutely recommend eating healthier, or eating less and exercise is important for us all. Even if it's just walking. I get bad (what I call) flare ups the second I eat bad and get lazy. If you're reading this, there is hope. I'm not very obese imo. But getting the slightest fat off my body has shown major indication of improving the pain and discomfort.
I was diagnosed with this disease at age 12, along with meningitis, pineal cyst, arachnoid cyst, I was hospitalized for weeks and weeks I was finally sent home and 10 years have passed and i have had no side effects besides headaches until the past month. I’ve started having vision problems and ringing in my ears and severe headaches (I haven’t had these types of headaches in ten years) I am very scared because what I went through when I was younger was absolutely debilitating and now I have a 1 year old. I haven’t checked on my cysts or condition since that time so it’s very long overdue. I just need prayers guys
On a routine eye exam, the doctor discovered my left eye had a swollen optic nerve. I was rushed to the emergency room for mri, and lumbar puncture. All was fine. I was referred to a neurologist and thought it was silly to see one since everything was fine. I didnt go back, and then lost my health insurance. Now I feel bad and want to see a doctor.
Lemon Fresh hope you are well?
I was diagnosed with IIH 4years ago but we haven't that much to afford that expensive surgery.. now I'm just on my own... god bless you everyone...
Last wrds: please don't take anything for granted ❤
How much is the surgery? No one should be deprived of a life or function saving procedure because of ability to pay. Are you able to manage reasonably with medication? Hope you're doing okay.
@@jonathanbecker8935 thank you for your loving concern ❤ I'm doing really good, pain is my new bestfriend. One thing I've learned that mind set is everything.
I have had this disease for 3 years. I could not walk, headaches that kept me in bed. I was incontinent, my ears had a swooshing sound and I was legally blind and had 6 nerve palsy. I had a VP shunt surgery, but sometimes I still feel uneasy and my memory is not what it use to be. However, I am glad to have my vision back.
Hi this is my BF's account on here but... Your story sounds just like mine! I'm writing to you because after all this high pressure and vp shunt( I got a year ago) you also have memory/ cognitive impairment? I do too! Like- you can't find a word in your vocabulary? I hope u are well.
Y Jeff what is 6 nerve palsy?
Its when the 6th nerve in you eye is affected and your eyes turn inward. It's painful.
Have you ever had facial numbness?
I just felt pain.
After months of specialists and tests, I have finally been diagnosed with this condition. I have suffered from vision loss, severe headaches, nausea, pulsating tinnitus in my right ear, dizziness, and fatigue. I was told time after time that this was in my head and everything was normal. I had MRI after MRI done because my doctors were convinced they had missed a brain tumor. I go in for surgery at the end of the week and I will be put on diuretics. I would like to thank Dr. Alan Maloon for believing me and not dismissing me and my feelings. This has been damaging mentally and physically and I can't wait to hopefully get my life back.
So the MRI's showed no stenosis right? I have all the symptoms you mentioned except vision loss it's more of blurry vision, and my MRI's and CT scans are clear. Did you suggest the doctor to test for IIH or did he do it on his own?
@@ITACHIUCHIHA-dr8sz I don't know about OP but for me to see the stenosis, they had to do a venogram with an MRI (at the same time) I believe it's called an MRV.
Also I had to make the distinction that my headaches were not normal but very pressurized which tipped the doc off to it being blood flow related and the MRV was scheduled after. I was also having rapid vision loss though.
Edited to add again: An optometrist looked into my eyeballs and saw intraocular pressure so they referred me to a neurologist who diagnosed the pseudotumor cerebri/ IIH
I have these symptoms too, except any vision problems or so I thought. I have 2.25 power in my right eye, pulsatile tinnitus in my right ear, I feel some internal press, pain behind the ears, neck and right side of head. Did your vision improve later on?
I'm a male 60yo suffering from IIH since I was 26 and had a traumatic head injury (concussion). I was in the Navy and "post-concussion syndrome" headaches were debilitating. A CT revealed a possible brain tumor so the Navy medevaced me to Walter Reede (Bethesda) hospital. MRI showed I have an enlarged 4th ventricle (Dandy-Walker) and the head trauma caused my intracranial pressure to become high causing the chronic debilitating headaches. I was medically discharged and went to the VA who have never properly diagnosed me! Years of treatment with pain killers and hundreds of medications has led me down a long lonely road, I was an enigma. Abt. 20 yrs ago a neurological center that mostly treated hydrocephalas put me on Acetazolamide with amazing results for about 10 years. I started having peeing problems, enlarged prostate, and had to taper off the diamox. Apparently the headache is not necessarily dependent on high ICP, and cannot be used to stop/treat headache.
Does anyone have any experience or knowledge of foods/supplements which help with IIH?
After being diagnosed almost 4 years ago and doing EVERYTHING possible to avoid the shunt, I finally had to break down and got the shunt on this past January. I would have done anything to have known about this procedure! I hate having the shunt, and still have to take all the medications prior to surgery.
Hello so how has ur shunt been treating u? I had to get one last yr and honestly it has helped. But im pregnant now and im so scared cuz i have a nose leak now that hasnt leaked in a month that they say they have to repair jus to be safe. How have u been & whts ur opinion?
I was diagnosed with this in 2017. The first symptom was flashes of light, then blurred vision in my right eye. I went to a specialist who noticed that I had a lot of pressure buildup, and he suggested I go to the ER for them to conduct a lumbar puncture which was unsuccessful. Then I was admitted to the hospital where they did a lumbar puncture and a excessive amount of fluid was drained and I was in the hospital for about a week. I also got severe headaches.
Just officially diagnosed after two spinal taps and two visits to the neuropthalmologist.
My name is Steven bootz when I was 19 I got pseudotumor my stories quite similar to hers. First symptom was a wooshing noise in my ear, blurred vision, debilitating headaches it took the doctors a year to find out what was wrong with me. It wasn’t until I was on the verge of going blind I had to get a spinal tap. from 19 to 24 every month I got a spinal tap eventually my pressure resumes back to normal. Everything kind of went away except for the wooshing noise in my ear from 24 to 32. I thought it was gone I just had to live with the wooshing noise then three months ago I started experiencing symptoms and my neurologist referred me to a surgeon who just last week put a stent in my right venous being that was extremely narrow. The noise is now gone for the first time in years I feel OK just a little weird. I think my body just has to readjust and get back to normal, there needs to be more awareness about this disease. This disease is just as bad as cancer or any life-threatening disease if anybody who’s going through this I need someone to talk to ask questions please notify me.
Hi Steve, I'm about to have the surgery and would love to pick your brain 🧠 lol not funny for this diagnosis but if I don't laugh I'll cry kind of thing so
@@danielacollins3940 you getting a stent ?
i have a rare case of Pseudotumor been seeing doctor for long timw now still learning about it
My story is almost identical to hers. I discovered mine a little differently though. I'm so glad my cornea got scratched because if it didn't I could have gone blind. Sounds weird but let me explain.
I was having vertigo and wooziness. I would get extremely dizzy with a pressurized headache. Not a normal headache. But it happened so gradually and I had given birth within the last 2 years which caused high blood pressure so I assumed it was that. I had migraines since 9y.o. so brushed the headaches off too. Then one day I woke up feeling like I had glass in one of my eyes. I spent hours rinsing, getting any eyedrop eye rinse whatever could help but it still felt my eyeball was being cut by sand and glass. Some of the worst pain I've felt in my life. So I went to the primary doc and they said my cornea was scratched so they patched that eye up, gave me special eye drops and I was due to have a follow up. While having the patch over that eye I realized my vision was black in my uncovered eye half of the time. I let the doc know and got referred to an optometrist. They found the swelling and blood vessels in the back of my eye so I got referred to a neurologist who diagnosed me with pseudotumor cerebri. They put me on the diuretics. The diuretics made it 100 times worse. I was bedridden. I couldn't lift my head at all. Yeah my vision was back but the pain was bad enough I'd rather go blind than be bedridden so I went back to the neuro and he said I had to get a shunt so I got referred to a neurosurgeon at a medical uni. I tell the surgeon my symptoms and situation and one distinctive thing was that my headaches were not normal headaches, it felt like there was a vise grip on the base of my skull/head. It felt like a ton of pressure. So I got referred to a vein specialist (can't remember what type of doc exactly) but this doctor completely changed my life. He actually listened to me. The pressure I was feeling tipped him off to a vascular problem. I had a MRI + venogram, they found stenosis I think the same spot as the girl in the video and placed a stent. The surgery was over 4 years ago and it completely healed me. No more vision loss, no more of those headaches and no shunt or diuretics! It was a very scary process. I thought I either wasn't going to be able to watch my toddler grow up or I'd be bedridden for the rest of my child's life and unable to be a parent. I'm eternally grateful to all the doctors who helped me.
For anyone dealing with this, I know it's hard and fucking terrifying. There's a light at the end of the tunnel. Don't be afraid to advocate for yourself. Pay close attention to your symptoms and let them know. Ask about a stent if diuretics and shunts aren't working for you.
Thanks for sharing your story. I had brain surgery in 2014 for Chiari Malformation and part of my skull was removed in the back. Been feeling okay until early August 2022 and severe body pains, smelling smoke/burning smells, headaches all over and pressure in back of head, memory loss, i fee like I’m in a fog all the time and brain is floating, I lost about 6-7 weeks where it’s blank and it has affected family, work and working out. The ringing in my ears has been even more severe since this all started and I have headaches where it feels like a spike is going through my eye to the back of my skull. My work thinks I’m crazy because if you look at me I look okay yet everything inside feels like trash. I’m waiting to hear from the Neurosurgeon as they did a brain MRI on 9/28 with and without contrast. I’m hoping they find something because I feel like I’m going insane. I live in IL and hope someone out here can help me. Again thanks for sharing your story. I hope you are doing better now.
Thanks for sharing ... it is very terrifying indeed. I am nervous to start that Diamox, the side effects are horrendous 😳 😬 what type of specialist did you see who did the venogram? I've been seeing there are shunts and there are stents. Was that procedure difficult? Also, not to be personal, but was your BMI under 35? Because with a BMI over 35 they don't want to do the shunt/stent.
@@1KingIsComing hi how are you doing now? What did they end up doing to you to fix your symptoms? Did you have intracranial hypertension?
I was in her shoes...i ended up blind in my right eye for 4 years after my last revision i gained it bk
Shayla Harris what kind of revision! i need help i lost peripheral vision in both my eyes
@@lakiamalloy03 just a shunt revision
I've been trying to deal with this condition for awhile now since 4/2018 the doc I have just want to keep given me meds I don't want no more prescriptions but my vision is getting bad and I feel my life isn't exciting anymore I hate noise lights and being around people I can't even enjoy my grandkids sometimes I can't even sleep at night because of the pain wish it was more options and doctor's who could help in Indpls area 😔 I'm glad she feels better 🌹
I know how you feel. I'm sorry you are suffering too.
My mom was diagnosed in 2003 with idiopathic intracranial hypertension following several surgeries including Optic Nerve Sheath Fenestration. Her headaches have permanently gone but her vision loss still exists today. Other than the vision loss, she is perfectly active person but her day to day life has become miserable due to vision loss. This video gives me hope that she may see the world again (She can recognize bright light and shadows sometimes). Anything anyone can share with me I would so appreciate.
She lost vision permanently??? What happened now ??? After optic nerve surgery she can regain her vision??
I'm from Austin, TX as well. I was diagnosed with this when I was 5, they originally thought it was a brain tumor. After medication and surgery I have not had any problems since (I'm 19 now) other than some vision problems!
glad you didn't go to one of the 30 docs she went too, lol... um, do you take acetozolamide? also, do you avoid taking drugs like isoretinoin, vit A, tetracyclines, etc) they inc intracranial pressure.
Do they Tx you with :
1. serial LPs
2. Lumboperotonial shunts
3. optic nerve sheath decompression for your eyes?
Lauren Tidman how are you now??
I was diagnosed back in 2012. I was having severe headaches and out of my the left eye I couldn’t see out of it. It was completely blurred. My eye doctor diagnosed it and I went to nationwide children’s hospital in Columbus Ohio. I was rushed into surgery right there and then. My spinal fluid was still high so I had a shunt placed and haven’t had problems since
How long did it take to recover? Did you need someone to take care of you?
Did you have a merina IUD by chance?
God is good!!!! I’m so happy for her!!!! I pray that I can receive the same help & for everything to also be a success for me as well then I too can lead a normal life again like her. ❤❤❤
I’ve been struggling with this since I was 8 and have yet to find a doctor who takes it seriously I’ve had this for 20 years and they have told me no more spinal taps but yet haven’t even given me surgery to relieve my pain I also have chiari malformation what does it take to go to John Hopkins because you guys are seriously my last hope😩😭
10 years ago I took a fall and broke my femur right down the middle. I was in the hospital for 3 days and and in acute rehab for 21 days when I came out I couldn't walk. I was in a wheelchair for months going from neurologist to neurologist. They couldn't find any reason why I couldn't walk. Until I went to a neurologist at a research center they research Parkinson's and Alzheimer's. And she gave me the diagnosis of drug-induced caused by a drug used for a long period of time called depakote(prescribed 500 mg take two at bedtime) she prescribed a lumbar puncture test and when I got back to her office I got up out of a wheelchair and walked with no atrophy (I had already exercised regularly when I was stuck in a wheelchair for 8 months).
I just got diagnosed with this after I been telling my doctor for years something was wrong. I kept having headaches, feeling dizzy, lots of fluid in my ears. Still they kept saying it was my anxiety and all this mess. Now finally I was able to get tested by them going into my spine which was the worse pain ever & I ended up having a spinal headache bc of this but they found out what was wrong.
My son was diagnosed with this when he was about 18 months. He had 2 spinal taps and was put on medication to lower the fluid to avoid the need of having surgery. Its been nearly 4 years since I've been able to get updated results through a neurologist. When he started showing some signs of it again I demanded he be refered to a neurologist and now they are sending him to an ophthalmologist. My son will be 7 in june, hes ocd, adhd and autism spectrum unspecified...
My son is autistic and is 18 and recently been diagnosed... it is very debilitating to him as of now, but we havent had treatment yet
I too have been recently diagnosed with this condition. I was 21. I always suffered from migraines so I didn't think anything about it, but it was getting worse; light caused extreme pain. Every bone in my body was hurting, my sides, back. My eyeballs looked like they were swelling up with fluid and causing them to droop. I was throwing up constantly, couldn't even keep water down. I have since been put on a strict, no salt diet. I'm glad to see that I am not alone.
Raven H how did the dieting help? How are you doing I need hope
How are you now
I thought I was tripping but my eye was looking weird like it was swollen to me. Sorry this is happening I too have IIH.
Where can i contact one of these doctor i need help. Can someone help me i am losing my eyesight. Its awful to live with this.
I was diagnosed with this after months of painful, debilitating headaches. First I was diagnosed with MS due to lesions on my brain and I refused treatment for that ailment because I just knew! I ended up in a wheelchair and lost most of my vision before the most wonderful neurologist Raja Boutros performed a spinal tap. The result was Pseudotumor cerebri. I was in the hospital at the time and he prescribed Diamox. Unfortunately the hospital failed to follow through and I was discharged without it, only to be hospitalized again three weeks later. Needless to say when Dr B realized the hospital had failed me he was ticked off. Result was I ended up in a rehab facility. The Diamox did help for a few months and then everything got worse. An emergency lumbar puncture relieved the pressure one night and surgery was then scheduled. I got my vp shunt the end of September 2004. Unfortunately it seems that it is failing. My vision is compromised and my migraines have returned. Hoping to find an informed neurologist real soon.
Betty Evans oh so sorry to hear this, how are you now?
This video was posted 8 years ago. Is there any update? Are these non-surgical procedures common place now? My wife suffers from Pseudotumor cerebri we are looking for job-surgical options. Any advice would be appreciated.
My mother and I had carbon monoxide poisoning from our furnace being blocked. We were helped at the hospital and made it home safely. No permanent damage for the high levels in our systems. This was about 4 months before finishing my 9th grade year at school, had to be like 99' 00' I think.
Within a few days of coming home with no symptoms I woke up for school and noticed something was seriously wrong because I had double vision. I noticed closing one eye I could see and did this to get to the bathroom where my worst fears had come true, my mother was right! If I crossed my eyes too much they would stick that way. Well, one eye was crossed, whichever one I wasn't focusing with. I started noticing my head was hurting.
It took nearly a month, many specialists and every test known to man before my head hurt so bad, mind you It hurt so bad I had been vomiting and sleeping for a month, and my neurosurgeon came into my Podunk hospital and decided it was time to do a spinal tap. That was the most exhilarating part for me! the second he drew back that syringe it was like the sound you hear when a water cooler guy puts a new 5gal water bottle in a machine.
That blup blup sound, that was what I felt and heard in my head and spine. By the time he removed the needle I felt so much better. He sent me to a specialist days later who officially diagnosed me and sent me to Dr. Koshnik at Columbus children's hospital. After 2 more months of excruciating and debilitating headaches and 8 more spinal taps, number 9 was unsuccessful technically, so 7 more to remove the pressure Dr. Koshnik finally decided to put a shunt in my spine! 24yrs-ish later and I have lived with the pain and misery left by those taps and the shunt. But I can see straight and no headaches, so there's that! Can't even get and MRI these days the places are too afraid to rip the shunt out and couldn't get the Dr to send my files showing its made of a non-mag surgical steel.
The moral of my story is, be very weary about anyone messing with your spine! Go with this girls treatment or literally anything else, if you can!
I'm 18 and have dealt with having pseudotumor cerebri since 2015. I am currently taking methotrexate shots every week. I have to take the shots for at least two more years. It is so exhausting and my shots make me nauseous every week, yet it is the only way to continue on.
Have you had a Merina IUD?
I had this diagnosis when I was 15 years old in the early 2000s. They decided it was a side effect from an acne medication called Minocycline. I had taken the medication for 2 years without any problems, but went to a walk in clinic for an ear infection and the doctor told me to double the medication because then it would act as an antibiotic. In 2 weeks, my headaches became so intense I heard my heart pounding in my head 24/7. I dreamed about it in my sleep. I couldn't escape that sound or the pain. I began sleeping till about 3 in the afternoon which was not typical for me. I began to have vision blackouts especially when I changed positions from laying down to sitting up to standing up. I couldn't pass my drivers test because I was afraid I'd blackout while driving. I went to an eye doctor who sent me to my doctor for an MRI. I then had a spinal tap which made me sick and I threw up for days. I felt like I would be okay with not living anymore. Finally, I took an experimental medicine and had follow up visits for years. I have to wear glasses now, but overall, I made a full recovery. I wouldn't wish this on anyone. If you're suffering with this, please don't give up hope.
I was diagnosed with this at 14. I was 90 lbs and 5'1". After multiple dr. and ER visits an Ophthalmologist sent me to the ER. I was admitted after a lumbar puncture showed elevated ICP. It is the most debilitating thing I have ever experienced. They were going to put in a shunt but a combination of steroids and diuretics worked after a few weeks in the hospital. I'm now 37 and it has not returned, However about 6 yrs ago my sister was diagnosed with IIH. I guess they changed the name after all these years. I was wondering if they have found a genetic link. She still suffers and has suffered permanent vision loss, they say she can be on the medication possibly for life.
I was diagnosed with this disease in 2013 and had a lumbar shunt placed in 2013 due the the medications not working. I am now getting a revision done but this time they are doing the vp shunt.
I am too facing this problem but i did not get good doctors and not sure of what to do
My name is Ashleigh & I was just diagnosed on Friday
I also have this one very severely and my name is Ashley and I live in Texas too.
Fire Fox how is it now? I hope you’re doing better.
I feel for her. I was diagnosed by an optometrist about 15 years ago and unfortunately I already had permanent vision loss by then. I also did not want a shunt. I am forced to get spinal taps whenever the fluid builds up. It’s dangerous yes, but it’s better for me.
I have vision loss as well. Is this something lasik couldn't fix??
That’s what happened to me, it’s hard for a woman to loose
Weight! so why they don’t have nutritional therapy more for woman with this disease if it’s mainly cause by Weight?
Craniosacral Therapy. This has not only kept me from a shunt, but has also made it so that I can live again: I would recommend it to anyone for anything, not just this but any type of head ache problem
YES! it's the only thing that's brought me any relief!
I was diagnosed in 1998 after an eye exam. All of these years later, i still have migraines and ive lost a lot of my vision. It would be great if we had nore research on what causes this because i am not overweight and I've never been.
Just wondering, I have been getting migraines with aura all my life starting at age 10. I had a brief hiatus all through my 20s but then in my 30s and 40s just got the aura with barely any pain. Recently I get these pounding headaches accompanied sometimes with a whooshing noise in my ears (come to think of it, I always have this sound and used to listen to it when I was little). I also get these weird peripheral black spots and like a peripheral flickering in dim light. I wonder if it's just the migraines or something like this
I too have this, I was diagnosed in 2020. I have had this probably since puberty. My doctors keep telling me to loss weight, and I try I eat less but to much fast movement cause me to passing out, this includes laughing to much. I really wish the meds worked for Diamox, made it so much worse and Topamax made me want to end it all. They said to do a shunt but I don't want to be disfigured. I wish I had a doctor who cared.
Before I was diagnosed I couldn't go out I had to be homeschooled it hurt to much to think my ears where leaking I didn't know why it wasn't until my doctor by chance suggestd I go to a neurologist did they finally diagnose me
How long did it take to feel normal after the surgery
Hi, thank you for reaching out to us. Because each person’s medical situation is different, we are unable to provide treatment recommendations or second opinions via this form of communication. Please call 888-872-1408 for assistance
Hi, I had an severe ischemic stroke 3.5 yrs back resulting in left side hemiplegia followed by many post stroke convulsions Medication & physical therapy with electrical stimulation is going on however no such neuromotor functional improvement is seen. Can stenting help me in recovery as there was a blockage in one of the arteries in RCA territory of my brain.hence the infracts took place in that territory of brain. And may b due to consuming the anti convulsion drug for such a long period now facing double vission, blur vission as well
I was diagnosed almost a full year before I got my vp shunt. The neurologist kept saying it was migraines. Ive lost and still loosing my periphial view in both eyes. Where I dont have the pressure headaches anymore I have the ringing/humming in my head 24/7. When I get up I am dizzy and cant function. So I have to lay back down. Ive been back to surgeon and he said this is the new me... I'm nausea, dizzy, head heavy... I go from sitting to laying to just get through my day.
this is exactly how i feel! I get dizzy and have to lay right back down. Everyone has told me that it is "in my head" and that i am "making up the symptoms". i don't know what to do
I was diagnosed back in 2013 and I got put on medication that had subsided the pressure and I got taken off about 3 years ago. A few days ago it came back so I’m going through the whole process again, I have a spinal tap and mri this week so hopefully it goes well. It’s pretty bad this time though, loss of peripheral vision in my left eye.
Did you have a Merina IUD implant?
Have you had a Merina IUD?
@@terrirogers2281I know they never answered but I have IIh and I've never had an IUD.
I was diagnosed with PC with IIH 3 years ago. Firstly we tried the medication therapy and spinal taps. The medication didnt work, just made me even more sick and I had a lot of side effects.
That means I cannot take the right dose and I ended up in a hospital because of it. (I still need to take it but in less dose, but soon I can get rid of it).
I had a lot of spinal taps, in the end we do it day after day but my pressure was so high still that it comes to the end : I needed to reconsider to having a VP shunt surgery. This was the time when I got the Hydrocephalus diagnose too.
I didnt think too much, because during these years I read and learned about the vp shunt and how it is working, risks, life with and so on.
I wasnt able to stand up from my bed for 5 days, even not to go to the bathroom, because of my pressure and condition, the pain and vision loss... So I decided, go for the operation!
So I got it exactly one week ago (12.02) and so far I am okay with it. Of course I have a lot of fear, BUT for me and to this point it looks like, working very well. I cannot tell how it will affect on my daily life later (by the way I am 29, female from Germany).
What is important that you neked to think about pros and contras, research, research aaaaaand many more research! The most important that it is your body, your decision and you need to understand everything about this health problem and your options.
Every person different, what is good for one, can be very bad for another and vice versa. I wish the very best for all of us, and I hope that in the end, all of us can find the best solutions for ourselfes to dealing with these Health Problems!❤
Also! Find the support groups on Facebook, so helpful!
Alyssa J I tried to start a support group on FB years about 10 years ago and had no luck. I also tried to form a support group locally to where I live and had no luck with that either. I wish people could have a better understanding of the condition so they might havea some idea of what I'm trying to tell them when I talk about my experience with this and what I go through day to day.
That's awesome! It's becoming more of an epidemic today, I've met several ppl in passing who have it, actually about 5.
We have to keep talking about it ❤👍
Alyssa Johnson how are you now Alyssa?
@@salmanalltheway I've been in remission since '15 after optic nerve decompression 🙌🤞
I have this as well rn they have me on meds and i did my first spinal tap back in june or july
My neurologist is referring me to John's Hopkin's after I saw this. I have done around 1000 hours of research on my own because I needed to take my health into my own hands. I started having the headaches, blurred vision, ringing in my ears and moments of being disoriented for all of 2012 but was always told it is stress/anxiety. I know how my body reacts to stress and this was not it. In Dec 2012 It took me loosing my vision completely in both eyes and ending up in the hospital to get this going. They took a CT scan and an MRI. I was admitted to the hospital and told a neurologist will come to talk to me in the morning. She came in early and informed me that they found a tumor in the left frontal lobe but it was benign. She then went on to say the tumor is not causing all the symptoms that I am having and further testing needs to be done. I was in the hospital for a week this time with many tests run with no results. They let me go home on Christmas Eve so I could be with my girls but I was to return to the neurologist in 4 days. I did and they started me on some meds to see if it would help the now permanent headache that would not stop and the dizziness etc. After 4 days on the new meds I was getting worse so they put me back into the hospital in the Neuro Science ward and start a ton of tests all with negative results. They then ordered an LP to get samples of my CSF to run more tests not realizing that the LP itself would be what was needed. My opening pressure was so high that the radiologist started asking me, "Are you having headaches?" "Is your vision blurred?" "Do you have ringing in your ears?"...to which I answered yes to all of them. He said I think we just found the cause. My opening pressure was so high it took them quite a while to drain vile after vile of fluid to get me into a safe zone. I had now been diagnosed with PseudoTumor Cerebri. They started me on the Diamox and gradually weaned me to 2000mg per day. I lost 32 lbs and it didn't change the pressure, I get botox for migraines which helps with the severe migraines but when I have one coming on I use alsuma injections and pain meds. I am now also on 40 mqe's of Potassium because my body can't keep up with the amount it is loosing from the Diamox. I have been in the hospital just because of how low my potassium has gotten and it has now affected my heart and kidneys. I have had 7 LP's and my opening pressure is elevated every time, not as high as the first LP because the Diamox has helped a little there. I never had anything wrong with my vision and when this is through I will be able to get a script to get classes because I have permanent vision loss and sometimes double vision. All the Neuro Surgeons in Orlando will only do a shunt, but as I stated I have done a lot of research and a shunt is not the way I want to go. It will not leave me with the quality of life I want to return to. Due to the pressure I have also been having 3 different kinds of seizures, the worst one was on May 3 2014 when I had a Grand Mal seizure and was blacked out for over 7 hours on my left leg, cutting all the circulation off and to date have not regained the feeling in my foot or full use of my leg. I have to walk with a walker or crutches. I am only 38 years old and this disorder has taken my life as I know it and threw it away. I am hoping that I could qualify for the Stent because I have to stop taking the Diamox before it kills me. I have been in the hospital far too many times over the last almost 2 years and something has to happen so I can live again.
Michelle Goebel why do you have to stop taking the diamox?
Michelle Goebel I'm so very sorry. I'm in a similar boat. Except, I do have ringing in my ears and optic nerve damage, with a loss of color of at least 50%. I have tremors, major sounds in my head, cognitive declination, memory issues, underactive bladder, double vision, blurred vision, flashes of lights, whole body vibrates. Hell, I have sooo many Neuro symptoms, it's insane. I've only touched the surface. I'm terrified, not to mention, terrified of having to have a shunt, which I do not want. I'm on Diamox 500mg daily, but feel it's killing me... I have a follow up tomorrow.
I'm scared I've been diagnosed with this. no one has explained it to me. I've just looked it up and I'm so nervous. I have majority of these symptoms
+nyannapure Don't be scared. You will likely be fine. Please look up the group "Pseudotumor Cerebri/Intracranial Hypertension" on facebook and join it. There are many members and its pretty active and the people there can answer almost any question you have.
please dont be scared hunny .altho you absolutely need to see your nero doc regularly and your eye doctor .i was diagnosed less then a year ago after i started loosing my vision and i had to sleep sitting up cuz the pressure was so bad .and uncomfortable. you and i as well are just lucky they caught it .just keep up with your docs apps and you will be fine !
Me too... :(
I have it too, and mine has completely gone away with a simple medication. I take topomax in the morning and at night plus acetazolamide. You also must stay hydrated --- tons of water whether you like it or not. Exercise helps the most. *Do everything your doctors tell you, and if something doesn't seem right, ASK THE DOCTOR AND SPEAK UP!*
Please get help. You can go blind from this. I have it too.
I am hoping someone can help my sister.
She is currently 59 now and has been suffering with this condition since about 2006 or so. Sadly, she has had what I consider a horrific life since then. She had the shunt put in back then, she us obese and has thyroid issues as well. Her vision is very bad now, but not blind. She is in the ER so often she knows they are tired of seeing her. They now accuse her of making things up so she can get narcotics. She unfortunately is a single mother, unable to have a job, let alone have a quality of life. She has continued blackouts now, and has multiple seizures on a regular basis. They get so bad she injures herself if she lands badly.
She has no insurance, only Medi-Cal (government assistance)
I feel so bad. I have no idea how to help her. Doctors here say there is not enough research on this condition, etc.
We are jn Central California (fresno).
Any suggestions out there?
it also took me till i was damn near blind till my doctors could figure this out! im blessed they figured it out
i lost my central vision last weekend, and only then was i diagnosed with this :(
same withme my vision went pretty fast so i called a eye doctor and they discovered it .i o my vision to the amazing eye doctor who knew my syptoms and what to look for! things will get better hun. go see a neurologist. mine perscribed me acetazolamide a diuretic. ive got my vision bak fully since then
did your vision fully return? :/ i have just been discharged from hospital and i have been told its very case by case.
Stacy Polk please email me in feel like dying so depressed mayragarcia1124@ymail.com
Stacy Polk please email me at, missey.f@sbcglobal.net. I'm scared to death. :( :(
I had a large meningioma tumor removed on February 1 of this year. I am experiencing a lot of the symptoms associated with pseudotumor cerebra, feeling the pressure in my head when going from ceded to standing and hearing like a whooshing sound in my head I can’t even feel on top of my head in the area where the tumor was removed and feel a throbbing. Also when I bend over to tie my shoe or to pick something up in a come back upright it increases the pressure. Is this normal after surgery and will this eventually go away on its own or do I have to have some sort of intervention? I also will get some accompanied blurred or fuzzy vision when there’s pressure kicks up.
there are very conflicting opinions on whether weight has anything to do with this condition. i have been on 500 mg for like 4 years now and almost all of the side effects are gone. I take it at night only
after almost a year of emergency rooms, doctors, tests and labs, they diagnosed me with idiopathic intracranial hypertension, or pseudo tumor cerebri, and it's now 2 years I suffer daily. I take Acetazolamide every other day, it affects my stomach and I get muscle numbing and cramps all the time, still horrible headaches and nausea, I'm so tired of all this. I have 2 little kids, and I can't fully be there for them. I feel so discouraged 😭😭
Reading these comments is heartbreaking & terrifying. I was diagnosed with IIH just a week ago but I've been having symptoms for I know at least 10yrs but everytime I mentioned it to doctor's they've misdiagnosed it. I have asome vision loss... I started on herbs during the back N forth appointments 1st with the retina specialist and then a week and a hlaf later went again my eye pressure was 30 & went down to 24 by cutting out Caffeine & Adding an herb called Bilberry. Since my lumbar puncture opening pressure was 31 I'm now on diamox. I remember this happening almost 10yrs ago everything just went black! I mentioned it to my doctor then and he told me since I was pregnant maybe the baby laid on a artery for a minute. Doctor's just don't get it!! Even with this last doctor who sent me for the lumbar puncture DIDN'T WANT TO TEST ME and all because she stated just because the eye Specialist was concerned meant nothing because everyones eyes are perfect behind it...when its a clear indication of pressure including my optical nerves heavily swollen!!! But when she asked what my symptoms were my memory is so shot to hell I couldn't remember & just mentioned one which was my ear trouble... After she started speaking like she wasn't sending me for testing I demanded that she did!! And sureeee enough opening pressure 31.
I recently had to place a stent in my left transverse sinus after I was attacked from behind by 2 criminals.
lumbar puncture had icp pressure of 33.5
I had all the common symptoms of increased icp.
the stent has fixed about 50% of problems. I'm going to see neuro tomorrow for follow up visit. I think I'm going to ask for another stent be placed in right traverse Sinus after few months.
stent is better than shunt. I was told shunts fail a lot.
I got right transverse sinus stented.
most of the pain is gone inside my head. but pressure is still there. tinnitus as well.
the only solution for me now is wait and let time resolve my csf pressure or get L.P. shunt.
I'm going to wait at least 3 or so years. at least I can sleep better now thanks to stent. my optic nerve is feeling better. the pressure in head and Tinnutus.. I will have to live with for now.
My doctor had been telling me for about 5 years that I should have an LP, but I was to terrified. Finally, after 5 days in the hospital, he said it was time, and I gave in. Good thing, because my pressure was 58. Hello, IIH!! Didn't need another for another year and a half, and it was 25. Much lower, but it was funny to see the anesthesiologist getting all those tubes lined up in case I started sqirting CSF all over again. Lol
@@jamssnana4084
Hello 58 is very high.. I'm surprised your eyes didn't pop out.
My left transverse sinus has a short stent while right has a longer stent. I feel some pressure on left side... I plan to get vein pressure treated again next year and most likely will have to get extended stent in left transverse sinus.
I pray you have healed and those bad people have been punished for their crimes.
John Hopkins we need you in Savannah GA smh
My story is the same as Ashley only it took me 12 years to get the stent
Hi. I'm having IIH symptoms like high pitched sounds in my ear during all summer.
I was taking levothyroxine (Euthyrox new formula) since May but a week ago I changed to another brand. Now those sounds are getting lower and lower.
I have an appointment with my neurologist but due to the covid I have to wait two weeks more. I'm tired and my stomach is churning but fortunately I don't have headaches (it was only a weekend last july).
Could you tell me what could I do (apart from waiting)? Perhaps it will dissapear for itself? Thanks in advance.
Hi, Please reach out to inquire about a new appointment by calling 855-695-4872. Please note, many of our offices are reaching out to patients to reschedule appointments as video visits; this will depend on visit type and currently, these are only available for existing patients. Please call the above number to learn more about what options may be available for your specific situation. You can see more on our patient and visitor guidelines at www.hopkinsmedicine.org/coronavirus/index.html#patient-visitor-alerts
Just got diagnosed with this. Hm... Yeah, now I'm scared.
I have this disease and this doctor is my doctor as well I’m in the process of trying to figure out if I’m in need of a shunt or a stent because the meds are not working it’s very scary I’ve had this now for I believe 3 years I found out just by having a yearly eye exam it’s been a very Trumatic and scary experience
Lexi Ruth I want to contact this doctor, what is his name & location?
Jenna Chopelas his name is dr. Moghekar , he is located at John Hopkins Bayview on eastern ave Baltimore md 21224
u can google it
I was diagnosed with this 3 months ago, and sent away to lose weight. At the time of diagnosis I weighed 162, I now weigh 145. My symptoms are getting worse, but my neurologist won’t get back to me. I have recieved no medical treatment, nit even a refferal to an eye doctor. Now I have to start at square one and get on a waiting list for a refferal for a new neurologist. I feel so hopeless.
I know how you feel, I was diagnosed with this 15yrs ago and it was blamed on my weight (just had a baby) and my eye doctor didn't act like it was a huge deal. Something that would go away with weight loss only. I ended up losing over 130lbs (weighed 267 day I delivered) by the time my child was 3yrs old. Routine eye visits showed the same but not worse. About 5yrs ago was the last time I had went to eye doctor and the pics of my eyes I remember clearly (not much of a change good or bad- but the same). Now in 2023 they have worsened so much (stage 3 )from what I can tell from my research and watching Drs do presentations) and I'm not at my lowest weight ever but have gained about 15lbs over the winter. My eyes look so much worse than when I was at my heaviest and even a difference of 5yrs ago and I'm at the same weight which is considered "normal" BMI for my height. Now I wished all those years ago that my eye doctor had been as persistent as he was the other day when he told me how important it was that I researched IIH and looked into it. I had no idea it was this serious but all my symptoms I've been dealing with over the years add up and back then he barely even told me what it was called and even seeing me over 100lbs lighter than in the past, tried to blame it on my weight. I'm the smallest now I've ever been all my life and no health professionals have ever mentioned my weight concerning my health since I had my child. I think it may be a factor but I don't think "losing weight" is a magic cure that some drs and optometrist make it out to be. Mine has clearly gotten worse over the years, even with dramatic weight loss. Actually my eyes looked better back in 2015 when I was a bit heavier than they do now. I just wished that he had referred me out back then after I'd clearly lost weight with no change in my screenings on the eyes because now it is so much worse and maybe back then medication could have helped me prevent what is happening now. I had to take it into my own hands, do my research diligently, find a specialists in Neuro optamology and get my normal eye Dr to refer me out for an appt. I do hope that you have found help and that our comments here will help others find the care they need
Hi
Please reply please
I have a problem seeing the peripheral vision from the side of the nose and the edges of this shadow dance
Doctors went to work, confirmed they confirmed their approval for laser work
The question is what is this shadow and does it develop and threaten eyesight? !!
Hi, Please reach out to inquire about a new appointment by calling 855-695-4872. Please note, many of our offices are reaching out to patients to reschedule appointments as video visits; this will depend on visit type and currently, these are only available for existing patients. Please call the above number to learn more about what options may be available for your specific situation. You can see more on our patient and visitor guidelines at www.hopkinsmedicine.org/coronavirus/index.html#patient-visitor-alerts
I was diagnosed 5 years ago. I've had a shunt put in. My pressure was too off the charts to contain with meds.
Did it work
Aliyyaa how are you doing now?
How are you now?
I have recently been diagnosis with Pseudotumor. I went to a normal eye appointment one day and my eye doctor said that I have swelling in both of my eyes but mostly my right. Then I went to a local Eye Institute in San Antonio, Texas. They couldn't clearly give me a diagnosis until I did a full MRI scan of the brain, eye and then pictures of both to see if anything was causing the swelling like a tumor. Thankfully everything came back normal but they still diagnosis me with Pseudotumor Cerebri. In San Antonio, there are only two Neurologist and don't know how soon I can get in. So far I am only having some mild headaches but no other symptoms so far. My doctor has mention pursuing to do a Lumbar Puncture test to remove some of the fluid. I am wondering if some of you have done that and what your intake about that is for the specific test. I am learning and researching about this new disease that I have . Thank you for letting me share my story.
alexis neuman I have had a Lumbar Puncture. I had mine mid July. They typically use it to diagnose but for some reason nobody had me do one until I was pursuing surgery. My opening pressure was 27 on diamox. It’s really an important test for doctors to determine where your levels are at and in my case, how my body would react to surgery. How are you currently?
We are in San Antonio Texas
Dr. Zavala . You?
This comment is old but I have IIH and had the lumbar puncture last week... I felt IMMEDIATE relief when I sat up. I didn't experience any headaches like some ppl do from it I just felt good & like someone opened a window & let light in because apparently my vision was darker or something. I still don't see clear without my glasses but I feel it was a slight improvement.
Hey everyone I just need some advice on what direction to take now. I was diagnosed with the pseudotumor in 2008 which the doctors advise me then to have surgery that I did not want. So I had spinal taps done and was prescribed medications to help secrete the fluids. After taking diamoxx the Doctor had to take me off of it because it making me sicker. Then i got tired of the spinal taps. I had 17 of them done before i made up in my mind to move forward with the surgery. In Oct.2009 i had the surgery and again every since the surgery I have been back and fourth to hospital and back to point A again with having spinal taps done and I still have an shunt!
+A'Cher Bowleg Hi, what do you mean with 'I had the surgery" what kind of surgery was it?? as my sister is being called daily by the hospital to go for a surgery.. as her medicine is are not doing her good..
she is being advised surgery by scraping bone out of her scull from inside?? I still don't get it.
How is she doing today?
My problems with head pressure started about 6 months ago. All of a sudden I got a migraine out of nowhere. I’ve never had a migraine before that point. From then on I’ve always had this immense pressure in my head that I can’t get rid of. My vision started getting blurrier and my head and eyes feel like they are vibrating. What’s weird is that it also manifestares into bad GI issues. Nausea and my stomach was uncomfortable all the time. I did a restorative diet and saw gi doctors but nothing had come back. I’ve done chiropractor and acupuncture but nothing was helping. Medications from the neurologist weren’t helping either. My mri was normal. It’s been 6 months and it’s hard to function. My vision is getting spotty now and staticy. If someone could give me feedback on if I may have this condition please reply
Liam Falk hi , what kind of head pressure it is, is it on one side of head? Does it feel like that its numb?
Are they doing any clinical studies? I'm ready to donate/volunteer my head. I'm tired 😫
You can find all of our clinical trial information here: trials.johnshopkins.edu/
I've had it for two years. Its hard to deal with it, I've had 9 spinal taps and am having to deal with spinal leaking right now,like 3 days ago, I was begging my mom to shot me. That's how bad my pain was, and I have a high pain tolerance.
Maddie Euliss sorry to hear that. did you get MRV Scan, MRI scan?
I had a stent placed in my left transverse sinus and the pain is gone. I still have pressure, in head, especially ears and the ringing.
I'm thinking to getting stent placed in right traverse Sinus if Doc agrees.
R P did you get the other stent done??
Hello. I was also diagnosed with pseudotumor cerebri. I used diazomid. The papillary edema did not go away for 7 months. Has anyone used the medicine and the papilledema disappeared? I need some hope
My daughter is 10 and she just had a spinal tap. Her pressures were 29 so now she has just been diagnosed with this. MRI showed sinus issues as well. Her eye sight has already been effected
Sunshinerinker and The Curl Family VLOG I remember when I was first diagnosed My pressure was at 55. My doctors told me that My eyes were the worst anybody’s ever saw at the hospital
Im glad That they found it in your daughter earlier and before it got worst
We are sorry to hear about what your daughter is going through. If you are interested in having a second opinion or would like to speak with someone from Johns Hopkins, please call the appropriate phone numbers listed on the page below. Our medical concierges can arrange consultations or treatment plans with the most appropriate specialists. Johns Hopkins Medicine International also provides language interpretation, financial counseling, assistance with travel arrangements and anything else to help make Johns Hopkins feel as close to home as possible. ow.ly/IJKqR
Johns Hopkins Medicine my daughter was diagnosed with pseudotumor cerebri last year and started with her having the flu and days after she started feeling pressure in her head and eyes she had 2 LP and she was drinking diamox 500mg twice a day for a couple of months around the middle of july she was no longer drinking the meds she was in remision..so after 8 months she started with the flu again and sinus pressure and again she started with the same symptoms head ache pressure in her head and eyes and again this friday march 23th she had her 3rd LP with pressure i believe of 35 but she wasn't put on no meds due to to her vision being ok and not hurting her sight.but i just see it odd that both times it came back because of a flu and sinus pressure..could is be connected in any way.. I mean she was fine before no headaches no discomfort..we are very confused..by the way my daughter is 15 years old and she recently lost 20 pounds and her doctor wants her to lose 20 more but still he doesn't guarantee that this might go away..😔
Craniosacral therapy. I've been diagnosed now for 3 years and this has kept me fr
I was diagnosed a year and a half ago. I have a complicated case as when I was diagnosed they found blood clots in my arms. I have issues with arm pain and leg pain on the right side. Also have pulsating tinnitus, head pain, sinus transverse narrowing and vision, dizziness issues. No one seems to be able to help me. Would you take my case please?
Hi, Please reach out to inquire about a new appointment by calling 855-695-4872. Please note, many of our offices are reaching out to patients to reschedule appointments as video visits; this will depend on visit type and currently, these are only available for existing patients. Please call the above number to learn more about what options may be available for your specific situation. You can see more on our patient and visitor guidelines at www.hopkinsmedicine.org/coronavirus/index.html#patient-visitor-alerts