Pseudotumor cerebri at 24: My symptoms, diagnosis, and first lumbar puncture (IIH)

[@rachelmcgill4362]

I was diagnosed at 16 and after being treated with Diamox it went into remission. For some reason the doctor did not tell me that this was a chronic condition and 7 years later I started experiencing some of the same symptoms but since I thought I was “cured” I didn’t think it was IIH. I found out at my routine eye appointment that it’s back after months of having symptoms. Luckily it was caught in time and didn’t cause any permanent damage but I’m so terrified of eventually losing my eyesight. Prayers to anyone going through this 😞

[@louly7457]

I think we could not lose eyesight as long as it is diagnosed in an early stage

[@rlsmith191]

I have the same condition. The longevity of the complications and all is enough to drive me insane. The diamox rarely helped and I got a Vp shunt. Still having issues w my vision and like u it's terrifying but we won't speak that into the universe. Stay strong.

[@curtyowellmedicaladventures]

You are a beast. I’ve had hydrocephalus for my whole 26 years on this planet, and I just want you to know that I am cheering you on.

[@bethdodd4872]

Well I guess you could say I have been on this journey for quite some time. I was diagnosed February 2, 2007. My journey started very suddenly and became quite interesting. I end up being put on two different medication‘s Daymarks and Topamax also had to spinal tabs and an eye surgery within the first week of being diagnosed. In a month and 25 days later I had brain surgery to put a ventricular peritoneal shunt became totally blind the next day which was March 26, 2007. I did experience some seizures but overall the surgery was very successful. I have stayed totally blind in both eyes only see very little light in left eye. I am so grateful my shunt has been functioning for 15 years now. Even though I do not have my eyesight there’s a lot of things I have to be thankful for. Listening to your video reminded me of the days when I was first diagnosed. I have always said sometimes we may not understand why we are going through a situation but if we just try to stay positive we can make it. Plus if we don’t ever go through anything in life how can we become strong? I know what I went through was very difficult at that time but I am a better and stronger person today. I did want to mention be careful taking the steroids I know this video is around two years old but it can increase fluid buildup learned that when the hard way LOL. Also you’ll have to forgive me if some of my words in this message are kind of jacked up I have to use voice to text LOL. I try my best to think of it this way I can still do things everyone else does just a little different. I became a massage therapist a few years ago and it’s something I’m very passionate about because you don’t need your eyesight to do it just your hands. Thank you again for sharing your story I greatly appreciate it🥰

[@sara21ram]

You're not alone, I was diagnosed in 2008. I'm presently experiencing symptoms again, may need a lumbar puncture. Glad you're okay and thank you for sharing.

[@Ang417]

Doctor's kept thinking i was crazy. I haven't been officially diagnosed but im pretty sure i have this. Everytime i went to the ER they kept saying they couldn't find anything! I had bad headaches ,panic attacks and high anxiety. Light headed. I had a CT done and they found it!! My doctor wants to do an MRI! so i get that done Wednesday but i definitely have it. My head is hurting so bad right now. My doctor told me i was having migraines

[@katieginther3684]

I could feel the relief from the cf being drained. The same thing happened for me , my vision changed and the pressure around my brain lightened. It felt like water trickling down my head from the top down but instead inside the skull. It was freakin incredible, I felt normal for a few days. Its now been like 6 months since then and Unfortunately the pressure is back ,im on diamox too, and my back and neck are tight again.

[@Ajetta13]

I was officially diagnosed like a month ago...my symptoms started backed in November. I thought it was just stress from working on my thesis or that I was over due for an eye exam. Apparently I’m one of those weird cases where I can’t tolerate the either of the recommended medications so I was scheduled to see a neurosurgeon soon. Smh i just finished grad school all I wanted was to get a decent job and have a life. I’m 25

[@Esmechoco4]

I was diagnosed just over a week ago. Just like you, I didn't think I was sick and actually I happened to have viral meningitis as well as high intracranial pressure so I had that worst headache of my life. They did all tests and through lumbar puncture they found out both these conditions. The stiffness in my neck and shoulder was there for a long time but I always thought it was because I had bad posture. So far I've been alright after spinal tap and taking treatment.

[@lmedina9394]

THANK YOU SOOOOOOO MUCH.... I am going through this right now and I'm going to the ER for my LP in 2 days and I'm so nervous. This was so helpful

[@erikakrimminger106]

Jaymee - Just finished listening and I’m in tears. I just hate hearing you go through this but I hope you contact me. I’d love to talk. 33 years with it and I feel I’m a pretty good resource. And I have IBS with my Psuedo Tumor so I know it’s hard to balance your treatments at times. Everyone’s story is different but there are more of us out there than when I was diagnosed. 😊

[@JaymeeCisneros]

Hi Erika! I always feel so conflicted because I hate knowing othera have to deal with this, but it is so nice to know I am not alone❤ Thank you so much for reaching out!

[@sonyaedgerton4824]

i love and hate that you have 33 years experience, you are definitely a good resource, I sent you an email, thanx for sharing

[@kerilockhart8585]

I’m getting my first LP tomorrow afternoon. I’m scared, nervous. They’re trying to figure out if I have IIH. I’ll update once I know. Thank you for sharing this!

[@bhargavisp7986]

Did you?

[@nicolepillow3262]

Everything your saying is so ACCURATE

[@theythemgae9025]

I totally get the dismissing symptoms and thinking you're a hypochondriac, I've had two Drs be like noooo we need to check this out properly! I'm INCREDIBLY lucky because I've also had a dismissive Dr who doesn't give a toss

[@ashleymayer322]

Just got diagnosed today thank you for this I am having vision problems right now horrible headaches thinking of you ❤️

[@heathervictoriasnyder5302]

Feels good to know I’m not alone I’m 23 and I’m suffering from this

[@sonyaedgerton4824]

This was a great informative video, thank you thank you. I am almost mirror with my IIH mi us the AERD, wow, like you need something else. Hang in there. Funny how the lumbar, as painful and uncomfortable as it is, helps, even if for a moment. I will be looking forward to your follow ups, nice to know we are not alone.🙂🙂🙂

[@marselshtylla]

22 here from Albania got the headeche in late January , February was hell on earth for ne started physiotherapy 80% of the headeche is gone but coming back now i think this is a life style thing it started when i stoped being active 5 months inactive in front of a pc .my eyes are blurry duble vision hemorrhaging and the doctors still cant diagnose me going to Germany for treatment now on 18 th hope they can do smth in time

[@ayesha.mankari]

Hey fella! I am 27 and have experienced every single thing you said just that I had double vision issues. I was diagnosed in feb had been thru MRI's and Lumbar puncture. Doctor says im being overweight. Due to lockdown I wasn't able to check up with doctor and yesterday I went as I was having bad headaches and other symptoms. They asked for MRI again and today they'll be saying what all medicines to continue or stop. This pressure thing is really really scary. I hope we all overcome this soon.

[@JaymeeCisneros]

This is a super common thing, I was also told it was because I was overweight. It’s different for everyone, because I couldn’t lose weight until after my stent but I have heard from others that it helps.

[@abhishekdodiyar6335]

Hey Ayesha I am also suffering from iih can you help me

[@deonwebster3820]

I just had my MRI today!! Omg, so good to know I wasn't crazy🙌

[@desareefuentes8226]

I was diagnosed when I was 13 years old. I'm currently 33 years old . I have a vp shunt and about to have it revised in 2 days. I used to have to have up to 3 or more lumbar punctures aweek . I ended up with horrible scar tissue in my back and eventually the vp shunt was my best option.

[@nicole4779]

thank you from the bottom of my heart for all this information. It was super helpful!! I was recently diagnosed and I'm gonna try and loose weight to see if it helps. Thanks again for the spinal tap tips.

[@XxMaJoRxX77]

Diagnosed at ten. I’m 27 now. And have had reacquiring issues lately. I was warned it was life long. But never thought I’d be back to it this soon.

[@シン-t7q]

hello! did u go to a neurologist? is ur condition getting better or worse? im 17 and i think i have iih bcos the symptoms matched pretty well, and i have yet to get clinically diagnosed by a neurologist.

[@chrisledesma3168]

I’ve had the same pressure headache on my temples, top of head and eye pressure since September of 2020. Non stop 24/7 . Not even a second of relief.. been to er multiple times. Dr’s didn’t want o do a spinal tap because apparently that’s only for meningitis... (not true) Medication hasn’t touched the pain. Sensitivity to light has been awful. Blurred vision. Went to ophthalmologist and they said my nerves are cupped but not swollen. Neuro has me on migraine pills but this Isn’t a migraine... sumatriptan worked One time. Never worked again.. has anyone experienced this constant pressure in temples?.. I am honestly terrified day in and out

[@matejhulin9342]

hello, does you get diagnosed?

[@Destroyer15KC]

Im so afraid that i have this Intracranial hypertension.... I have these symptoms: Horrible headaches, mostly in the left side of the head, pressure in whole head, eye pain, double vision and blurred vision, ringing in my ears, and back pain. I visited opthamotologist and my eyes and optic nerves are fine, optic nerve is not swollen, but i have visual problems, last few weeks my vision is getting worse, its so blurred i cant even read or see peoples faces around me, im so afraid of going blind... I have apointment in 3 months with my neurologist... Im so afraid it will be too late when i visit him or he will not give me the right diagnosis. I had brain MRI and everything is fine with my brain.... I dont know what to do to get diagnosis. My family doctor thinks im crazy and its just " anxiety " and she send me to psychiatrist. She thinks im making up all these symptoms because everything is fine with my eyes and optic nerve. Could this be idiopathic intercranial hypertension?

[@JaymeeCisneros]

I have heard of people who have intracranial hypertension without inflamed optic nerves, but from what I understand is that it’s not common. Keep advocating or yourself and listen to your doctors❤️ Hopefully they can find out what’s happening so you can get treatment ❤️

[@chrisledesma3168]

Any news?

[@PlainAndChelsea]

Did you have a LP? That will help diagnose better. I had both that and mri and they were normal. Thank god. But I am still worried

[@GothZenpai]

I was diagnosed August 2019. at 24 as well. I had one of those stroke like migraines, which i later found out is called a Hemiplegic migraine. I've suffered from migraines for years, but only had seen a neurologist after the hemiplegic migraine. my doctor who is an older man keeps telling me that i wont have to take diamox and complain about the symptoms if i were to just lose weight and cure it....it's frustrating. I'm supposed to me on a modified Mediterranean diet. Meaning almost no carbs, no salt, very little Vitamin A, no tyramine. the only meats im supposed to eat is pork fish and poultry. its difficult. I hope hat someday you are rid of this

[@plus1everyday63]

I have this and I’m literally fatigued all day no energy and my vision is so weird it’s like I can see good but I can’t see if that makes sense . And it feels like I’m not here all day if that makes sense it just feels like I’m not here . My balance is terrible and I’ve lost about 40 pounds this stuff isn’t anything to mess with it ruins my daily life . I had whole bunch of tests done my specialists and my ocular pressure on both my eyes were 19.5 and 17 .

[@Ramos_0507]

How are you now? Did you end up finding out what you had? I have these same symptoms

[@klijhachamberlain7654]

I would have reached back and tried to strangle that doctor that poke shoot three times with the lumbar puncture I had the lumbar puncture it was terrible it was terrible thank God they got it the one time I don’t you’re so brave I like totally love you!! I cried oh I cried cried cried it hurts so bad!!!!

[@beelewis2425]

I have the same issue with the neck and shoulder but mines is on my right side I have the face feeling also. I also have Intracranial hypertension. I have the ringing also and the light headedness also

[@toripickerell6019]

I have right side neck and shoukder pain to. Is it from psdetumor celebri

[@beelewis2425]

Tori Pickerell yes, I think it is from IIH. I wish more research was done on this illness because the doctors I have come across don’t know much about it.

[@toripickerell6019]

Does ue neck and shoukder still hurt?

[@beelewis2425]

Tori Pickerell yes I use a heating pad often, it’s usually when my pressure high I think that’s why.

[@toripickerell6019]

@@beelewis2425 what woild be causing the itching in head

[@シン-t7q]

hello! ive been researching about my symptoms and luckily i think iih matched pretty well, im having trouble maintaining a good posture to the point my neck and shoulders are TIRED. my head feels very heavy and the tension headaches are progressively getting worse day by day, im so glad that i noticed these symptoms this month which means my condition wont probably worsen in the next few months. i have yet to go to a neurologist and get an mri but im planning to tell my mom soon as possible. i also got my eyes checked bcos i thought my headache were the effects of astigmatism but unfortunately it didnt do much. but how are you now? has ur condition improved? i really want my quality of life back 😢

[@belaaureada54]

Can you please help me, i’v been suffering for almost 3years. I take me steroids for almost 6months but after a year the swelling returned. I been done in my 2 MRI. but there is still no proper treatment.

[@rainbow20112011]

The MRI you got done didn’t show Papilledema or anything else?

[@JaymeeCisneros]

The MRI only looked for tumors and growths. Not the nerves or sinuses of the brain.

[@TheAdopted]

I am dealing with this as we speak I am getting MRI and mrv tomorrow.

[@JaymeeCisneros]

Hope it all went well❤️

[@sydneywatts1044]

How was your mrv! I have to get this done

[@TinaMarie]

The spinal tap was terrible 😢 I have IIH

[@sandymccann1188]

I was diagnosed 2 years ago and after failed high dose diamox and multiple LP’s I am getting a VP shunt. Any chance anyone else had the Mirena?

[@katrinavandergaag1081]

Did you also experience dizziness before being diagnosed?

[@omerelsabbagh8353]

Kindly tell your ENT doctor that your sinus problem is csf.

[@salaheddine2152]

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? !!

[@francesgold6649]

Were you taking any medications that caused this?

[@Laurenelizo]

My pressure was 39 and she got it down to 12.. I'm super sick afterwards though. Low pressure headache for days

[@tasha9650]

Mine was 30. Did the headaches get better for you?

[@KellyinTN]

Did they test your spinal fluid for lyme disease?

[@RaxhealUrbalejo]

Did any of you have any facial swelling in the eyebrow region? Do any of you have an IUD?

[@animallover8779]

I was diagnosed with a csf leak it is not the same but it's like having brain cancer as well

[@HanieletNickle]

What treatment did you get for csf leak?

[@Amaadification]

What were your symptoms for csf leak?

[@BeautifulMoodz117]

Does anyone take diamox and have to get routine blood work done ?

[@cranberriesgirlhype8292]

I have been on it since February and have had bloodwork done. My kidneys are ok still 👍

[@dannamorgan8698]

I have this my right side going numb all the time

[@mandyrose5822]

Did you have regular Tinnitus or pulstile Tinnitus?

[@haledeviney507]

Hey! We're you really confused before you did any treatment? Sometime I can't get my words out AT ALL 😩

[@bethdodd4872]

I just wanted to reply to your comment. Sometimes with increased pressure on the brain it can cause the confusion and some speech problems. Once the pressure decreases that symptom gets better. I did have some of those issues on occasion with pressure headaches. Hopefully you are managing your symptoms some better now I know it’s been a little while since you’ve made his comment. I have had this condition for 15 years and at times it can be challenging and then at times you feel completely normal so I understand it can be frustrating. Scientists are starting to figure out this condition isn’t just an brain or optic nerve condition it’s a metabolic Full body condition which most of us have been screaming hey I don’t feel right I’m tired, my head hurts. It’s like a whiny two-year-old with a boo-boo you just lay in bed because your head hurts so bad. I know that’s probably a very dumb analogy but that’s the only one I could think of LOL. Hope you are doing some better though. With me it was the extreme nausea vomiting blurred vision and headache together when they finally started listening to me. Hope everything works out with you and things get better.🙂

[@justicea1971]

Where are your glasses from ??? I love them.

[@JaymeeCisneros]

Zenni😊

[@MK-co6uf]

I have a constant feeling of pressure in my brain. It keeps me from being active as it gets worse with activity. Doctors cant really figure it out. I have no eye issues though. Have you heard of cases like this? I’m about to be evaluated for stenting procedure.

[@JaymeeCisneros]

I have heard of cases of people with IIH and no eye issue but from what I understand it seems to be rare. Unfortunately headaches and head pressure can be a symptom to many issues so it depends on your symptoms and tests ran by your doctors. You should definitely consult your doctor and see a neurologist if you haven’t already to rule out this issue. If you have high pressure they would see it in a lumbar puncture😊

[@dydb]

Jaymee Cisneros I also have pressure but I had West Nile virus with fever of 105 two or three years ago. I don’t have eye problems. I do however have eye pain but no blindness or anything. I have been going to the doctor off and on cause I’ve had high blood pressure as high as 176/100. I have also had mental instability cause of the pain I can’t do basic tasks. they now think it’s syphilis and like I don’t have any symptoms of syphilis. I had zinc tested and iron. I’ve had my carotid arteries looked at. I’ve been telling my doctor over and over again I have headaches following no ability to do tasks. But do you think aspirin would help the pain? Cause I do take pain relievers medications and they do help but it does return.

[@MK-co6uf]

@@dydb I was diagnosed with ME/CFS after the virus. Did they tellyou about that?

[@MK-co6uf]

@@dydb what do you mean?

[@Sara-world]

@@dydb how are you doing now?

[@Ang417]

I don't think i will do brain surgery either

[@mariaaastarr3032]

Hi. Are you able to fly on an airplane ?

[@tasha9650]

I get my lumbar puncture tomorrow but I have all the symptoms including vision problems and even a "dip" in my eye from the pressure etc. Anyways I flew maybe 2-3 months ago and though I was okay my ears felt funny...I get a lot of pressure in my right ear & ringing.

[@popstargurl241]

I was just diagnosed with this yesterday after my spinal tap. I've been getting the really bad headaches from it. I can't even sit up without yelling an instant headache today. So I'm trying to drink more caffeine but it's hard cause I'm not hungry or thirst.

[@blushalore3615]

Will caffeine help? Please answer

[@popstargurl241]

@@blushalore3615 for the spinal tap? It didn't for me. But I may not of been drinking enough. My doctors told me to drink alot of caffeine and to lay flat any time I got a headache from it. I ended up having to lay in bed for 5 days

[@toripickerell6019]

Hi i was dignosed with that to i had that for at least 1 year and a half before they could find a diagnostic. I have a question. I had a lumbur punture done on the 13th of April and they said my results was normal but how it can be normal if i have psedutumor celebri?

[@JaymeeCisneros]

Tori Pickerell From my understanding as someone with this issue, pressure can fluctuate on its own! There are many things that can cause a rise in pressure. If you are having pressure and the lumbar puncture is showing normal, it may be worth getting a MRV done to look for narrowings. Right after my MRV my optic nerves looked slightly better, but we did an angiogram which showed pressure before my pinching was at 40, and after was 14. Keep pushing for answers if you feel you aren’t getting effective care. I hope you feel well soon❤️

[@toripickerell6019]

@@JaymeeCisneros ok. What is the treatment for it

[@toripickerell6019]

@@JaymeeCisneros and whats a mrv

[@toripickerell6019]

@@JaymeeCisneros i have very bad right shoulder pain with right side above ear pain

[@toripickerell6019]

@@JaymeeCisneros how could it be making my head itch

[@toripickerell6019]

On my results i got it said opening prwssure 23 cm water what does that mean

[@JaymeeCisneros]

Tori Pickerell I’m not sure about the “cm” part you would have to ask your doctor about that. I was told normal opening pressure is 20 and anything over that is diagnosable for intracranial hypertension

[@toripickerell6019]

@@JaymeeCisneros my opening was 23

[@toripickerell6019]

@@JaymeeCisneros what was ur opening pressure

[@toripickerell6019]

@@JaymeeCisneros when u had urs done

[@JaymeeCisneros]

Tori Pickerell I believe I say it in this video, but mine was 40. We discovered later on that I have stenosis of my transverse sinuses which is making it worse. Everyone with this issue is very unique and that’s why it’s critical to talk to your doctors about finding care

[@d1agram4]

Oh no, this have anything to do with Aerd?

[@JaymeeCisneros]

D1agram this actually is completely unrelated to my AERD, but unfortunately this started progressing shortly after I got diagnosed

[@andreanicole9167]

I was diagnosed last year in January. I spent days with horrible headaches and suddenly I went blind in both of my eyes. I spent 3 weeks in the hospital. My left eye it's dark and my right eye I lost all my peripheral vision. It sucks a lot, it really does. I'm only 23 years old and I still don't get used to this. It stills hurts to know that I lost my vision and that now I'm considered legally blind and disabled... I miss working and I miss my old life. I'm always in pain but oh well... I can only hope that one day we will feel better.

[@JupiterLatte]

I'm so sorry, I hope things smooth out and you can find some semblance of normalcy again. And with the pain, I feel you there, but at least there are ways to manage it and keep it in check. I just take ibuprofen all the time lol Honestly, losing my sight is my biggest fear. It's like, take my hearing, take my voice, I'll learn ASL, but I need my eyes. And now that I have this and going blind is a possibility? I have no idea what I'll do.

[@itsmoree1137]

I understand stand you 100%. I’m 22 and just got diagnosed recently so this is very new to me and just trying to cope right now

[@josuecaro3517]

Just got diagnosed with it 3 days ago, I'm 24. Hope y'all are doing better.

[@bhargavisp7986]

@@JupiterLatte How are you feeling rn? I have been diagnosed two days back and I am scared.

[@belaaureada54]

Can you please help me, i’v been suffering for almost 3years. I take me steroids for almost 6months but after a year the swelling returned. I been done in my 2 MRI. but there is still no proper treatment.

[@shelbychapman5997]

I'm in the middle of my diagnosis, thank u so much for the insight this was very helpful 😊

[@kimboslice589]

I just had an eye exam today and may have this, I’m being referred to a specialist and am freaking out. However your calmness has reassured me a little bit. So thank you.

[@sarahmccarty1372]

Any update? I also had an eye exam a little while ago and they noticed my optic nerve was swollen in both eyes, lol I’ve been researching nonstop since then and I’m so afraid that I might have this

[@kimboslice589]

@@sarahmccarty1372 yes, I was actually diagnosed a month later with IIH/ Pseudotumour Cerebri. I’ve been on Medication since August and just had a check up with my neurologist and my optic nerve has reduced in size. I’ve changed a lot of things, but once you get the diagnosis for sure it’s really helpful to get you in the right direction.

[@katierandomly]

I’m currently dealing with swollen optic nerves. It began once I had my little boy and got a spinal tap. I got a spinal headache and it was HORRIBLE. After that, I noticed my eyes felt really weird. When I looked to the sides, I could see a weird ring. I decided to go to the eye dr and they told me my optic nerves were swollen and I’m scared of everything anyways, so I freaked out! They sent me to a retinal specialist that day, he looked at them and checked me out, did ultrasounds and whatnot, tested me for druesens, etc. They ended up setting me up for an apt in his office because they had more equipment there. I put it off FOREVER because I was convinced it was a brain tumor. So I ended up going and they tested me again and determined I didn’t have druesens, so they wanted to set me up for an MRI. I still haven’t went to it. I’m scared. I don’t think I have a brain tumor because I’ve been dealing with this for over 4 years with no relief. My symptoms have been pressure in my head, I have a blind spot on the lateral sides of each of my eyes, I get dizzy, my eyes have a harder time adjusting sometimes when I look at a computer for a long time, and I cannot spin around anymore. I wish I could go. I can’t make myself go. It SUCKS. I feel okay, I have actually lost a good amount of weight and still nothing. I function but I deal with it every day. It’s so hard to explain because you can’t psychically see it, so people don’t understand. I can deal better than I used to be able because I used to be HEAVILY depressed because of it, but I’m doing okay, per se. but I want to go to the dr but I can’t make myself 💔

[@kimboslice589]

@@katierandomly I can’t force you to go because I understand your fear. But, no matter the answer the sense of relief you’ll get from some sort of answer will be even more worth it. For years I thought I had a brain tumour because I had constant headaches and then the sinusitis diagnosis was given, didn’t go away and so I thought maybe I needed new glasses and then I ended up with a diagnosis of IIH. I’ve made huge changes and my outcome has changed drastically. Instead of thinking “what if it is a tumour?” Say “what if it isn’t”, Getting checked out and diagnosed is the fastest way into recovery. You’re stronger than anything you’ve got going on, so push that fear away and make that appointment! I promise it will be worth it.

[@lanayahh6083]

i’m 16 years old 5’0 and 110 lbs and I was diagnosed late February after i went in for my swollen optic nerve. they gave me lumbar puncture and that’s when all of my symptoms started showing up even more. the post lumbar puncture headaches where crippling for two weeks and ever since then my symptoms have progressively gotten worse. i’m losing my memory, i can barely get out of bed, my speech is impaired, my headaches and body pain is getting worse, even standing seems to be a hard task for me and i can’t focus on anything.i’m so scared of what is to come. I don’t feel like i’m strong enough for surgery. and I don’t know how i can deal with this. I started taking medication that manages the pain and the temporary blindness but makes me lose a lot of weight and feel even less energized. I don’t have hope for myself

[@JaymeeCisneros]

Please don’t lose hope! I kept getting worse and the pain was getting unbearable. I kept advocating for myself and pushing to get doctors who would treat the issue and not just give pills. Please talk to your doctor about a stent or shunt and see if that is possible to offer you relieve❤️

[@HanieletNickle]

How are you doing now? I hope you did get better

[@suannegalloway6694]

Your story is so similar to mine. Its so crazy to hear you have the same symptoms as me. I wish there was an easy cure

[@meoy0521]

23 and I been diagnosed a year ago and it’s back worse then ever . And I’m scrambling too find a eye doctor to refill the diamox

[@JaymeeCisneros]

Lea yummers oh no, I am so sorry to hear that! Would it be easier to get Diamox through your neurologist? These times are crazy for medical professionals, I can only imagine what kind of pain you are going through😔

[@rebeka145]

I hope you are doing well. I experience many of the symptoms you do, but I do not have blurred vision or I do not lose my vision. I have severe eye strain, neck pain, shoulder pain and migraines. My MRI came with two small changes but my doctors brush me away saying I am young, I am 26. I live in pain since 6 months, tomorrow I go to the optometrist to take a picture of my optic nerve. I guess I have to diagnoze myself because doctors wont do their job. I never had any injury tho I have a theory that my pressure might have increased beccause I took accutane one year ago. It is acne medication and has ICP side efect listed on the package.

[@JaymeeCisneros]

ExtraChilirose unfortunately it sounds like you are gunna have to advocate for yourself, but you can do💪🏻 No one should have to live in chronic pain, I hope you get answers quickly❤️

[@muhamedtouray1653]

I was diagnosed when I was 25. I feel light headed and unbalanced, my vision is poor. I do have headaches every now and then plus those at the back of my neck. I’m on diamox I’m also trying to lose weight to see if I can get rid of it. I think it’s related to birth control

[@asiamccurdy5955]

I was just diagnosed earlier this year. I have been experiencing blurred vision and I'm slightly sensitive to bright lights. I had to start wearing sunglasses indoors. I'm scheduled for the procedure next month and I just wanted to see any other experiences.

[@JupiterLatte]

I wish my lumbar puncture went as well as yours, I had two guys sticking me over and over whispering loudly to each other things like "See, it's nowhere near where it should be" "The needle is too short, should I get an epidural needle?" "No see, you're up here, try down here" "Wait, it's at an angle, pull it out and try again" I was crying and in so much pain, they were good at checking in with me every time I jolted or gasped or whatever. But it got to the point where I had to speak up "Please, if the next one doesn't land can we please stop? I can't do this anymore." NEVER letting someone stick me in the spine again lol But this video really helped, lots of similarities in our stories, it's just nice to finally have a name for it. Went a year between the initial suggestion for an MRI till I finally went to the ER, that whole year was spent thinking I had a cancer tumor behind my eye. Instead, it's IIH. Wild ride, yeesh.

[@JaymeeCisneros]

That is so scary🥺 I’m so sorry you had to go through that!

[@AdventuresInMyLife2024]

I’m going through a lot of these symptoms right now, was in the ER last night for extreme headaches, where I had a CT scan and they mentioned this exact thing. (I’m 24)

[@JaymeeCisneros]

Camelia I know it may seem scary, but it is so worth seeking care! Don’t be afraid to advocate for yourself, and seek out the next step to find a diagnosis❤️

[@rachierach1603]

Just to let you know that I ended up getting a lot of LP and the last one messed me up. It made it where I have no feeling down below. So just be extra careful when getting them done.

[@GodzBookworm]

Thank you so much for your video!! I was diagnosed with benign intercranial hypertension on Tuesday! I have had a spinal tap and am now waiting for MRI at some stage! Waiting for my meds to arrive. Worst thing is my manager at work will not leave me alone, I have a feeling this will take time, I can’t read, very hard as I work in libraries!! We will get through this!!

[@marinagonzalez1236]

How are you doing these days?

[@toripickerell6019]

Can it cause neck and shoulder pain and pain behind ears ? I have pain in my eyes going behind my ears and down my shoulder and shoulder blades and mine itches to and i have the same condition as u

[@JaymeeCisneros]

I have had pain in those areas, however mine never itched. It was more of a stiffness that I couldn’t work out and trying to stretch would make me feel light headed

[@toripickerell6019]

@@JaymeeCisneros me to

[@toripickerell6019]

@@JaymeeCisneros how do u treat urs

[@JaymeeCisneros]

Tori Pickerell I couldn’t, I wasn’t treated until after I got my stent. Everyone is different because different things can increase pressure. In my case I had sever pinching where the fluid drains out of the brain and I needed to stent to open it

[@rene5530]

Where do you experience the headaches

[@JaymeeCisneros]

Renee really it was a my head when pressure was high, most painful was my temples, behind my ears, and my neck. I also would experience shooting sharp pains from the back of my head to the front. Since getting my stent these have almost completely disappeared

[@yourbootyholeisyourbeautyhole]

i've had it three times now am currently in remission. the first time was back in 2010 right before i turned 19, then again in mid-2014, and one last time in late 2015. we caught it really late and i still have those blind spots. i had gone to the ER a week before i was diagnosed and they wrote it off as scotoma. it wasn't until a family eye doctor took a look and told me that my optic nerves were swollen that i finally got an answer of some sort. once i finally got to a neuro-ophthalmologist my optic nerves were actually hemorrhaging. it was absolute hell 😖 the spinal tap was so painful (where i learned i have scoliosis 😐). when it finally like started working there was so much CSF it was spurting out of the tube thing). one of the W O R S T parts was taking diamox. the side effects were almost not worth it but it _worked._ pro tip: don't even _try_ to drink soda. it's an atom bomb in your mouth. the only way i can describe it is "a brain tumor without the tumor". i've been in remission since 2016! hoping the next four years will be the same 🙏

[@MrHosway4eva]

No soda?

[@lucijacusticluce4551]

Hii, glad to hear that you are in remission ❤️ Im new in this so Im reeeeally scared and full of questions sorry :( for how long did u take Diamox before you noticed positive changes? And in which doses? Mine is 3x1 250ml.. I'm taking it for 10 days already, after few days some shits in vision became better, but maybe it was because of the punction :( Because now for a few days already I dont feel any getting better and the annoying pulsating tinitus is back and some weird sensations when I'm falling asleep.. I suddenly wake up, scared as f.. like some lightning in my head, really scary :( dont know is it something because of the high pressure in head or what :( had it only few times before the diagnose so Im not sure what is it.. maybe apnea.. like my brain forgets to work (breathe etc) when I fall asleep

[@bcc650]

Hi Jaymee. Thanks for your information. I have also been diagnosed and I'm really scared. I have 2 kids and I don't want them to see me like this. How dangerous can this be for me?

[@JaymeeCisneros]

For me the relief I got from the lumbar puncture outweighed the recovery from one. I have a 2 year old and found that I needed extra support taking care of him for about a week, until I felt less sore. In the end, untreated high pressure can be really dangerous so a lumbar puncture would offer immediate relief. I hope you get well soon, I know how hard it can be taking care of a little one while handling IIH. I could only imagine having 2. You can do this💪

[@JaymeeCisneros]

As far as Pseudotumor Cerebri, it can be dangerous if you aren't honest with your symptoms to your doctor's. Make sure you have a Neurologist and a Ophthalmologist you trust, and talk to them when you notice a change in symptoms. With the right medications it should be manageable. Otherwise ask about getting an MRV to see if stenting is an option.

[@bcc650]

@@JaymeeCisneros thanks for the the motivation. I had an lumbar puncture last week thursday, but I can still feel the pressure in my head. I'm also on diamox.❤🙏 let's hope for the best

[@JaymeeCisneros]

@@bcc650 I had to up my diamox mutiple timea after the lumbar puncture, so don't feel down if it isn't working right away. It can take some time to find the right dosage, but eventually it will get easier😊

[@yourbootyholeisyourbeautyhole]

blanche cadeau good luck!! diamox sucks but it does its job. just avoid carbonated drinks lmao

[@EccentricxXxShadow]

I was diagnosed at 29 with is. Unfortunately I was overweight at them time and essentially the only thing I kept hear was "diamox is the only treatment option, and lose weight". I didn't tolerate diamox at all and had to pretty forcefully tell my opthalmologist I was longer going to take it because I felt awful. He finally stopped prescribing the diamox and ordered a spinal tap for me. I immediately felt better afterwards. Since then I had no symptoms for a couple years but they've slowly started returning ironically after I've lost weight. One thing that I find incredibly frustrating is that I find marijuana/thc, and to a lesser extent CBD help relieve many of my symptoms. I wish this was being researched!

[@msunderstood8078]

Did the doctor give you a diagnoses of IIH before you had a LP? And did you get to try diamox before the LP? My Nero will not give me diamox untill I get a LP. She will not see me again untill I get a LP. I had an MRI w/ CONCAVED PITUITARY GLAND, I have paulsatile Tinitius also my Balance is off and I have a bad memory. Confused alot with my words. I am 5'5 at 130 pounds 37 years old

[@EccentricxXxShadow]

@@msunderstood8078 I'm so sorry you are dealing with so many terrible symptoms. I believe my doctor also performed the LP and then prescribed the diamox. My vision was affected by the pressure so he was concerned that I was close to losing my sight. My official diagnosis seemed to vary between the opthalmologist and neurologist. One would just say I had papilledema the other would say IIH for whatever reason.

[@msunderstood8078]

@@EccentricxXxShadow Thank you for your reply Eccentric shadow I really appreciate it. I'm am also so sorry your going through this too, it's awful.

[@EccentricxXxShadow]

@@msunderstood8078 it is indeed, but I hope you make a swift recovery or that your symptoms at least become less severe.

[@toripickerell6019]

Was that the pressure i had

[@hollypink5330]

I had the exact same experience but my pressure was 37! They attempted the LP 5 times!!! 🤦🏻‍♀️

[@karlaloredo9719]

Omg mine was 33 did you have double vision too ? Did the LP relieve your symptoms ?

[@annabelgarcia9845]

Hello there ,i just got diagnosed, my pressure was 47,i have no idea what i dealing with ,they said i have this because of obesity ,any advice?

[@ru55uzz]

Do you have any advice for high elevation living? We’re considering a move from Colorado to Florida to help with that

[@renee6868]

Amazing details thank you im waiting for my neurologist after my mri suggests iih ...eye exam Monday...thanks so much !

[@animallover8779]

Sorry this happened to you hon

[@toletstalkalilmo6330]

I was diagnosed with IIH as well . It’s no fun

[@crookedbiden9788]

I have it

[@jessjerz755]

Suffered for 12 years,figured it out myself and at the age of 36 am due for my stent in December.

[@rainbow20112011]

Did you have papilledema?

[@jessjerz755]

@@rainbow20112011 No,I did not. I had other changes,but not Pap.

[@rainbow20112011]

@@jessjerz755 Can a person have a completely normal Brain MRI and still have IIH?

[@jessjerz755]

@@rainbow20112011 Well the crazy thing is people get told they have a normal MRI,but it almost always winds up having something off (like a partially empty sella), that either the radiologist didn't look for,or assumed they were born with,that is what happened to me. I had to prove I was not born like that. I highly recommend getting an MRV,it is done in the same tube as an MRI,but looks at your veins,that is usually where most IIH people end up having stenosis.

[@karlaloredo9719]

Omg your lumbar puncture sounds horrible I’m so glad the doctor who did mine had no issue but my opening pressure was 33 🤭 I found out today I’m currently resting and my vision improved too but when I got home it was like a slight double vision so that’s upsetting 🥺🥺

[@josuecaro3517]

How are you doing now? My pressure is 31.5, worried what's to come.

[@karlaloredo9719]

@@josuecaro3517 I’m doing great after they lowered my pressure but just keep in mind that you will have really bad headaches after for like a week they will tell you what to do about it but My visión improve and I’m currently still taking diamox 500mg capsules.

[@josuecaro3517]

@@karlaloredo9719 so glad to hear you're doing better. I'm on diamox 500g too and prednisone. I also out myself on a 500-600 calorie a day diet, no salt or carbs since they retain water. Did they have to do any procedures did you get better with just the medicine?

[@karlaloredo9719]

@@josuecaro3517 you’re diet seems extreme and no I didn’t have other procedures but I did have another mri for my veins

[@josuecaro3517]

@@karlaloredo9719 yeah its extreme. But Obesity seems to be linked in someway to this condition. I weighed in at 453 Saturday already down to 434. at this point ill do anything to keep my vision and avoid a shunt. And glad to hear you didn't need any big procedure.

[@aprilg4116]

I think I have it but without the eye swelling. One year now non stop head and neck pressure. It's so awful, other symptoms too and no answers yet. All tests have been clear so far but I am pushing for lumbar puncture. I developed visual snow Syndrome at the same time so I thought it was all VSS, but i have been severely wrong.

[@Destroyer15KC]

me too.... I think i have it..... But i cant prove it and get right diagnosis... My doctor thinks im crazy and she sent me to psychatrist.... I have these symptoms: Horrible headaches, mostly in the left side of the head, pressure in whole head, eye pain, double vision and blurred vision, ringing in my ears, and back pain. I visited opthamotologist and my eyes and optic nerves are fine, optic nerve is not swollen, but i have visual problems, last few weeks my vision is getting worse, its so blurred i cant even read or see peoples faces around me, im so afraid of going blind...

[@JaymeeCisneros]

Definitely contact your doctor and be honest with your symptoms❤️ I know these symptoms can be paired with other things as well, so keep advocating for yourself and listen to your doctors. Hopefully together you can figure out what is going on❤️

[@aprilg4116]

@@JaymeeCisneros my lumbar puncture is next week ! I'm also being evaluated for craniocervical instability which can cause high pressure. Thank you :)

[@chrisledesma3168]

Any news?

[@aprilg4116]

@@chrisledesma3168 diagnosed with POTS and hypermobility, tmj. Waiting right now to hear from craniocervical instability doctor. No chiari or csf leak. I have intracranial hypertension symptoms all pointing to my neck being the cause. In worse shape than ever currently