1. Community
  2. Brain and nerves
  3. Idiopathic Intracranial Hypertension

Just diagnosed...

Posted , 8 users are following.

Harristm143
Harristm143

Hello, all...

The past two weeks have been pretty crazy to cap off the past year or so...I’d been progressively getting worse and worse headaches and even worse problems with dizziness/vision loss. About a year ago I went to my PCP to tell them I’d been having troubles working out because I’d get dizzy and light headed. She told me I was probably just sensitive to being warm... Okay. So I went on, trying to do my best to keep myself cool while working out. Dizziness got worse. Vision loss started to be a problem. I though maybe I wasn’t eating right beefier working out or eating too soon...anything to explain the issue.

Well, being 28 and not having vision insurance it didn’t cross my mind to go to the optometrist, but my mother made me go two weeks ago and low and behold both my optic nerves were severely swollen. So much so that the eye doctor personally called an ophthalmologist to make me an appointment immediately. So next morning I go to see him. Have a few tests done...he orders an MRI, an MRV, and a spinal tap, all to take place in the coming week. 

The MRI and MRV were clear of tumors and any blood clots...so that’s the good news. I had the spinal tap on Monday and the hospital had me met with a neurologist the very next day because my pressure level was at 40mmHg...didn’t sound terrible until they told me what my normal should be (between 10 and 20)...

So, the neurologist started me on Diamox immediately. I’ve been on it for four days...

I’m not sure yet if I’m still having a bad reaction to the spinal tap or if this has moved into side effects from the medication, but I have had a SPLITTING migraine all week, haven’t been able to stand or sit up, even slightly reclined, for very long without getting nauseous along with a splitting headache and the only relief I get is if I’m laying completely horizontally with a pillow under my head.

I’m currently on the floor at work in the back room with all the lights off because I was having a panic attack about almost throwing up...

I was told the pain is from my brain relaxing after being under so much pressure for so long but what am I supposed do if I can’t even function long enough to be at work. 

Thanks for reading...I’m just scared and I’m angry that no one took me seriously when I brought this up a year ago. It wouldn’t have been as bad as it is now if something was done about it when I told the doctor something didn’t feel right... 

0 likes, 11 replies

11 Replies

  • amanda19123
    amanda19123 Harristm143

    Posted

    Hello there .I know exactly how you are feeling . I was going to my docs for over 2 years about the way I felt . Pressure headaches, dizzy, vomiting, blurred vision , bad fatigue , list as long as your arm . But only taken seriously when I actually fainted with the pain in my head and was sent to the hospital ..at first I only had a scan done but me fluid mass was so big there was no mistaking it .. but this was 4 years down the line .. then it took another year before they a rally did my MRI which showed that I had collapsed arteries at the bass of my brain which they think was caused by the pressure of the excess fluid .. I then had these stented . But this has been two years past in April now and my headaches are as bad as ever and I feel that I'm just left in limbo where nothing is being done .. I take4× diamox ,+aspirin along with 8 other different sort of tablets some of which I take 2, 3 & 4 off per day ..so in total I take 26 tablets + eye drops ...

    Still waiting on a decision on having a shunt fitted so as I say I sympathise with anyone who suffers with this horrid condition

    Will be thinking a out you xxx

  • Sway
    Sway Harristm143

    Posted

    I was diagnosed in 2014. I have really bad pulsital tinnitus in my right ear, headaches and some weird vision issue but not loss. I took diomox but can't remember what happened or why I stopped taking it. Fast forward to last year i was leaking fluid from my nose told my doctor i thought it was spinal fluid he said no it was a staph infection. Fast forward to August 10th 2018 I started leaking fluid again this time like a faucet and went to the ER. Turns out I had a CSF leak. Basically a hole in my head. It was due to the high pressure the neuro surgeon said. I was in the hospital 12 days 9 in neuro ICU. I had to have a drain put in my back. It was not fun. I'm not at 100% but I'm going back to work monday. Just light duty. They took a skin graf from my stomach and tissue from the inside of my nose to form a patch on the hole and so far its holding. My neuro surgeon has me going for a eye test, spinal tap, mri again and possibly an Angiogram. That will determine if he puts a stent or a shunt I believe. My headaches and nausea are horrible but I have some meds for it.

  • Guest
    Guest Harristm143

    Posted

    Hi there. Our stories are very much identical, with how we were diagnosed and symptoms. The pain you are experiencing after spinal tap/lumbar puncture, is almost certainly from a spinal leak. A common complication from the tap is that the needle hole doesn't heal properly or fast enough, causing cerebral spinal fluid to slowly leak. You end up with low pressure which is extremely painful. A defining characteristic of low pressure headaches, is that the headaches get a lot worse when sitting and standing. Brains need a certain amount of fluid to keep them buoyant and comfortable- too much=high pressure causing optic nerve swelling, headaches, not enough fluid= painful low pressure headaches. Low pressure headaches from spinal leaks are one of the most painful experiences of my life. I was also in horrible pain when being up, nauseous, and also temporarily went blind in one eye. Don't push yourself- please lay down to recover.

    What to do for a low pressure headache and spinal leak:

    - Immediately lay flat, and stay laying down as long as possible to help build up pressure. Hopefully the puncture hole heals itself but this may take several days of laying down (took me over 4 days straight of laying flat).

    - Call your neurologist to let them know what is going on. If you are still having low pressure headaches/spinal leak after several days, doctor will likely recommend you go to ER and request a blood patch (where they take a small amount of your own blood to seal the spinal tap hole).

    - Stay hydrated. Caffeine can help a little bit, but laying flat is key.

     

  • Harristm143
    Harristm143

    Posted

    Has anyone tried CBD gummies or anything along with the Diamox to help with inflammation or anything? My anxiety about this has been causeong panic attacks which isn’t making my migraines much better... 

    I’m about ready to try anything >.<

  • haydangate
    haydangate Harristm143

    Posted

    Hi there it does seem to sound that your now experiencing a low pressure headache since your LP. Hopefully it will ease soon, maybe advisable to get checked for a leak like Ursa-median has suggested. I'm unable to exercise too! Even going up a flight of stairs brings on symptoms. I could never run or anything intense as I think I would pass out with head pains, dizziness etc. I've not tried the diamox but gather that gives a lot of side effects too. Unfortunately IIH is life changing, I've had it 14 years now. All the best xxx

  • issybells
    issybells Harristm143

    Posted

    Hey there

    I can relate with you very much. I am a 20 year old female from AU and for two years i've been dealing with this. I've been to multiple doctors, MRI's, CAT SCANS,BLOOD TESTS,URINE SAMPLES,ENTS. And all i was told is that it was "anxiety" as someone who has suffered with anxiety for most my life i know that this is not just anxiety. I'm sure you can relate?. I got home from the dpctor around 7am after staying in a hospital bed getting tests etc... for around 10 hours. I was told i could possibly have this or MS but i dont think i have MS but this i do believe so. I see a neurologist tommorrow and then i will get some answers!. Honestly i am also angry because noone not even my family even still are taking me serious they all say i need to go to a gym and get out more. I can hardly walk for a second or even shower. i only get releif when im laying down with my head completly flat on a pillow it's hard to breathe and i feel so sick all the time i can't eat much anymore and i dont feel like drinking it's horrible. i've had stroke like symptoms from this and STILL noone believes me..... 2 years later 24\7 suffering and im afraid now it has gotten worse but i highly doubt it. Because even the common cold can make you 10 times worst. It's only been 4 days let the medicine work and see how you go! I've heard treatment can manage the symptoms well. Good Luck! smile

    • haydangate
      haydangate issybells

      Posted

      Hi there issybells. Your symptoms sound similar to a csf leak, has this been suggested to you? Do you have a runny nose or wet ears? I've even had my eye leak x

    • issybells
      issybells haydangate

      Posted

      Hey there

      Nope, The doctors haven't told me what is wrong with me they say my MRI and CAT SCAN look okay, I see a neurologist tomorrow for the first time. I'm scared because I'm in hell because of this and I just want relief and to be able to walk without feeling like I'm about to die. I've had it for about 2 years now but it's just gotten worse. I did have sinus issues but now my nose harldy even drips or anything comes out sorta feels like it's blocked although I do have a deviated septum so I'm not sure if that could even cause it. I feel like I'm being dragged around in my brain or that my body is moving on it's on or falling. My ears are okay too not wet nor my nose. I'm not sure what it means when your eye leaks but it sounds scary sad

    • Sway
      Sway issybells

      Posted

      I though you were already diagnosed with IIH when you posted that you were told you had high blood pressure in the brain. I would wait to see what the doctor's come back with. A spinal tap to check opening pressure is a sure way to tell if you have pseudotumor cerebri aka IIH. Hope everything works out.

    • issybells
      issybells Sway

      Posted

      Oh no i said i was told i possibly "could" have high blood pressure in my brain and that it's possible IIH. But it's not 100% and when I said "i've been dealing with this too" I mean the symptoms. Thank you I hope all is okay with you soon too.

  • s.vlachy
    s.vlachy Harristm143

    Posted

    Oh wow you poor thing. It took me a good solid week to fully recover from the spinal tap. Never had headache and back pain that bad in my life. I hope you stayed laying down vertical as much as possible because they were my nurses orders too. It’s very normal and expected for your brain to be adjusting as well as your eyes so if you notice some weird white light specs in your eyes that’s normal, just keep your doctor updated. 

    It would be extremely frustrating not being taken seriously. Unfortunately it’s not a hugely common thing to have, so it’s probably not on doctor’s radars. Which is definitely not an excuse. It’s sad that we as patients sometimes have to push for further testing and googling our own symptoms half the time. 

    Anyway, at least you know now. Just take care of yourself. I hope you recover well. If you have any questions let me know. 

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.