IIH? I have these symptoms Severely
Posted , 4 users are following.
hello,
im 26 and when my symptoms started i was working out a lot. i had a lot of stress in my life, and gym life is how i delt with it. it didnt matter what time of the day or night it was, i always worked out. i ate healthy, i was mainly on a vegan diet. one night on my way to the gym at night, i got this really bad dizzy spell. like if someone dumped a heavy bucket of dizziness on me. i remember my heart beat going irregular for a couple sec and my eye vision shifted for a bit. it passed after a 3 sec or so. i still made it to the gym. however after that night, i felt this sense of imbalance for 2 weeks. i saw a doctor told me it was sinuses. however i had no sinus pressure. anyway, a week later, i felt this head rush where it feels like youve been dozed off or something. i dont know how describe it. i had a bit of a headache but i didnt have an visual disturbances like people with IIH typically describe, the double vision, black dots, floaters, peripheral vision diminishing. i had tests done by a neuro- Ophthalmologist, and she said everything is fine. i had a spinal tap done and supposedly the opening pressure was 30. however the neuro- Ophthalmologist says it could have been misread. she said with an opening pressure of 30 would have Severely caused damage to my optic nerves.
however, after that lumbar puncture, i feel this pressure in my head. like if i were to be wearing to tight helmet. i get dizzy, i get headaches, my head always feels weird ever since that lumber puncture. my eyes feel like they need to pop. i feel this liquid in my ears. i do get ringing in my ears too. my head feels like a huge bowling ball. it feels heavy, it feels tight and it also feels like something is pushing up against my skull which makes it feel like a stretching feeling. idk what to think anymore.
0 likes, 12 replies
Jenny.
Posted
sorry, i always meant to add that during these headache attacks, i get this heavy numbing feeling in my scalp. it goes into my forehead and inti my cheeks.
amanda19123 Jenny.
Posted
i honestly dont understand what you are describing
i have had IIH for the past 10 years and its nothing lit what you are talking about except for the opening pressure of 30
did they draain it down for you at all?
just wondering
as for it causing severe damage to your optic ive have opening pressures of way over 40 and have .minimal damage to my optic nerve i know im ope of the lucky ones but it doesnt always caus damace
just saying !!!!
Jenny. amanda19123
Posted
yes they did take spinal fluid. however, after 48 hours i had a spinal headache. which my doctor thinks it could not have been a high pressure because of the spinal headache. not sure really how that works, but my head has been hurting a lot since the LP. i started to develop nerve type pain in my head, so im not sure if its because my head throbbed so much from the spinal headaches that it caused irritation to my nerves. anyways, i started seeing a migraine specialist recently. he believes theyre just migraines, but i dont know what to really believe anymore.
Elizabeth2828 Jenny.
Posted
Hi Jenny -
I don't have the exact same symptoms as you - just pressure in my head/soreness in neck. My head pressure/pain is more on the left side although I do feel it all over too. Slightly blurred vision at times. Just went to my doctor, who thinks it's anxiety (of course. I'm not saying I don't, but I feel like that's always the go-to). My dentist/eye doctor didn't see any issues.
Have you had an MRI or CT? I had a brain MRI in December 2018, and a mid-upper back MRI in May last year - all normal. Sometimes I think I have symptoms of IIH. I also follow a vegan diet (but my blood work/vitamin levels came back fine). So, I'm not sure what to do at this point. I do suffer from migraines and I take Imitrix which really helps. Do you have any meds for your head pain?
I really hope you find relief soon!
Elizabeth
Elizabeth2828
Posted
Oh, I wanted to add - your post struck me because I also feel this odd sensation into my cheek/even the roof of my mouth - it's not numb, just feels very odd like there's pressure in both. I can also feel a slight pulsating as well.
Jenny. Elizabeth2828
Posted
hi elizabeth!
they have me on 20mg of amitriptyline. i still get a lot if nerve pain. but ive only been on this med for a couple weeks. i had an mri last year and everything looked fine. the thing is that i started to develop these symptoms after the lumbar puncture. i didnt really feel this before. i was getting lightheaded out if no where. i also followed a vegan diet, but im not really sure what may have caused my lightheadedness which is why they doctor wanted to do a lumbar puncture. they just never told me i would have killer headaches afterwards. everything makes my head hurt now which is why found a migraine specialist. there was a 4 month wait and i finally had my appointment a couple weeks ago.
Elizabeth2828 Jenny.
Posted
Hi Jenny -
I'm so sorry that happened after the lumbar puncture! I am really hoping the migraine specialist can help out and provide some relief to you. Do you still follow a vegan diet? Curious if you've had your vitamin levels checked (assuming they'd do that before a LP, but not sure?) My vitamin B was on the lower end, but still in range - I know that if that's off it can cause other issues.
I wish you well, and I hope the pain goes away soon!
Take Care,
Elizabeth
toni51114 amanda19123
Posted
Amanda people have different symptoms of IIH, I've had it chronically with papilladima for anyway and a half, what Jenny has described is the same symptoms I still have now, after being on medication and lumber puncture, her opening pressure was 30, mine was 28, your symptoms could be different as everyone reacts in different ways x
toni51114
Posted
sorry typo: *have it *for a year and a half x
Jenny. toni51114
Posted
hi, do you have the constant nerve pain and ear fullness? how do you deal with this? i sometimes feel like im gone, hmmmm how would i explain it, like i dont feel like myself anymore.
toni51114 Jenny.
Posted
hi yes I have nerve pain in my neck shoulders and back, I find it hard to sleep as I cant get comfortable and also the humming sounds and ringing in the ears combined is like hell, I have salt lamps in my room which help calm me, I put music on my phone and use ear phones the ones that go in the ears and out the music on low enough so It drowns out the humming and ringing noises and sometimes this helps me drift off, I also feel like a different person, I used to be full of beans a bubbly energetic person, I am the oposit to that now, I feel I have zero energy majority of the time, and because too much light hurts my eyes and brings on major migraines I tend to avoid going out unless I have to, which is hard as I've been told to losoe weight I am currently 13 stone I was 16 I have lost 3 stone since January just watching what I eat but the symptoms are worsening not getting better so I believe all this losing weight stuff is rubbish, I'm finding every day life hard, I make plans and on the day I physically cant do it then I have to let people down and it makes me feel awful but this illness has taken over me mentally and physically, I've been diagnosed for a year and a half it's only been recently that I fully understand what it actually is from my own research as the neurologist and doctors are useless where I am so I've just accepted that I have this condition now and I have to learn to live with it one way or another, I am on pain killers for the nerve pain are you ok any pain killers for your pain? when was you diagnosed may I ask?
Jenny. toni51114
Posted
how much is 13 stones in lbs? if you dont mind me asking. the thing is that my doctors dont think it's IIH. they think its simply migraines. i dont get any humming noises or ocean sounds in my ears. it just feela like i get drainage into my ears which is frustrating. i feel spacey sometimes and i think it's anxiety. when i calm down, i feel better. i just dont know what to think anymore. they tell me ear problems come with migraines. but at times i just want to tell my migraine specialist that i want him to xray my eustachian tubes to see if they might be clogged. my GP said that she doesnt think it's IIh either and the migraines have been caused due to the LP. idk im just sad that my body has let me down in a way because i have always felt great all my life. i did go through a lot of stress last year which may have induced the dizzy spells, and not sleeping enough and working out a lot, and probably taking too much preworkout added to that. i really do hope that you feel better. my specialist said that topiramate helps with the excess of spinal fluid. so i dont know if you want to talk to your doctor about that.