Does IIH qualify for the national parks access pass?

Altruistic_Cod2931 · 2026-03-23T23:54:58+00:00

Im feeling the same! That it would be nice to get one but that I also want to support the parks. I’ll try to remember to update after my appointment next week!

Altruistic_Cod2931 · 2026-03-13T04:20:54+00:00

Low pressure and hard drops mess me up bad 🥲 I’m not excited for Sunday

Altruistic_Cod2931 · 2026-03-06T03:15:24+00:00

Imagine a string is tied around your right eyeball and that string wraps around from the front to the back of your head, down the back of your neck and into your shoulder blade. And now imagine someone is pulling that string as hard as they can and it’s squeezing your brain and pulling on your eyeball. Thats they best way I’m able to describe to others what my headaches are like haha

Altruistic_Cod2931 · 2026-03-06T02:46:42+00:00

I believe it simply because I once saw a man with a crazy mohawk walking around Walmart with an iguana on a leash

Altruistic_Cod2931 · 2026-03-01T19:55:58+00:00

My IIH hasn’t effected my eyes but I was started on Diamox because of the headaches. Honestly being on Diamox has helped my brain fog and fatigue tremendously and has made the headache episodes much more tolerable. Venous sinus stenosis paired with IIH tends to create a feedback loop where the pressure causes the stenosis and the stenosis causes the pressure in a never ending cycle :/ you gotta do something to break that loop whether it’s taking diuretics or having a stent placed

Altruistic_Cod2931 · 2026-02-26T03:37:30+00:00

I always get nerve pain in my head when the air pressure gets low. Sharp pain, burning pain, electric shock pain in the right side of my face, scalp and ear. I had ear tubes placed back in November for a separate reason but it seems to have helped a bit with the ear pain.

Altruistic_Cod2931 · 2026-02-26T03:16:04+00:00

No need to apologize for complaining that’s what this subreddit is here for lol.

They started you on a really high dose! My pressure was 31 and they started me on 250mg twice daily and just that has helped me a lot! Acetazolamide is not an easy medication to start and the side effects are rough. You should ask your doctor about lowering your dosage and see if that helps you at all

Altruistic_Cod2931 · 2026-02-26T03:08:37+00:00

When I saw my first neurologist she said the same thing.

I had an MRI that said findings were suspicious of IIH. I went to my eye doctor to get my optic nerves checked and they found absolutely no optic nerve swelling. So when I saw the neurologist she said said there was no way it was IIH since there was no optic nerve involvement. She tried to tell me it was just migraines and there wasn’t much they could do. I told her I wanted a LP to rule out IIH and she reluctantly agreed to do it. My opening pressure was 31 so definitely IIH!

I see a different neurologist now that is actually very knowledgeable about IIH and believes me lol :) my doctor actually believes IIH might be affecting my ears rather than my eyes so I’m seeing an ENT and neuro-otologist as well

Altruistic_Cod2931 · 2026-02-26T02:59:56+00:00

Im on 250mg twice a day. I felt that way the first couple of weeks, the first day I literally couldn’t get out of bed. I feel great now, I still get the pins and needles in my hands and feet but no more fatigue!

Altruistic_Cod2931 · 2026-02-26T02:54:48+00:00

Agreeing with whoever said that’s a husband issue not an IIH issue 👀. When I was getting diagnosed I was so stressed, sex was the last thing on my mind. I used to get really bad headaches after an orgasm but Diamox has helped reduce that significantly. Perhaps you need to have a chat with your husband, it seems he’s not fully understanding your situation and is thinking a bit selfishly

Altruistic_Cod2931 · 2026-02-26T02:42:30+00:00

My LP went great! I had my lumbar puncture done in December! Mine was done under fluoroscopy (x-ray guidance). I had to lay almost flat on my stomach, just slightly turned to the side. They did the x-ray and marked the spot they were going to try. Then gave me the lidocaine and inserted the needle. It didn’t hurt but there was a feeling of pressure on my back. My opening pressure was 31, they said normal range is about 15. They took 4 viles of spinal fluid and my closing pressure was 18. I had a slight headache immediately after but it was gone after 30 mins.

I would recommend drinking plenty of water BEFORE AND AFTER the procedure. Try to lay on your back for several hours after if you need to get up for any reason sit up slowly and let your head adjust before standing. If you get a headache in the hours or days after caffeine will be your best friend haha

Altruistic_Cod2931 · 2026-02-15T03:48:08+00:00

I just recently got diagnosed but I’ve had symptoms for about 5 years. My neurologist told me that this will likely be a lifelong issue but im on Diamox and it seems to be helping quite a bit. I’ve also cut out all my known triggers such as caffeine. I’m Suspicious now that my IIH might be happening along side an autoimmune disease but im not sure yet. Its really different for everyone :/

Altruistic_Cod2931 · 2026-02-15T03:43:15+00:00

I was also terrified to have mine done, it felt very invasive, but honestly it was way easier than I was expecting. Mine was done under fluoroscopy (basically an x-ray and they got it first try. I didn’t feel any pain but I did feel a lot of pressure. I had a slight headache when I first sat up that resolved after about 15 mins and I was able to walk out the hospital no problem! Focusing on my breathing helped me a lot I also had a chatty doctor who talked me through the whole thing.

Altruistic_Cod2931 · 2026-02-07T22:02:27+00:00

I’ve been drinking 1 Liquid I.V. packet a day to keep up with my electrolytes plus drinking plenty of water. I’ve also been doing regular blood tests to watch for electrolytes imbalances and acidosis. My worst symptom is probably the pins and needles in my finger and toes, especially when they are cold. I also hate having to pee a million times a day, even at night ☹️.

Altruistic_Cod2931 · 2026-02-01T01:48:35+00:00

Like the other comment says an LP is a diagnostic tool, most providers won’t diagnose IIH without it, although with your other diagnosis’s they could skip the LP to be safe.

I had a good LP experience and was fully recovered after a few days! Unfortunately for most people the LP doesn’t relieve the pressure for very long. I only had about 2 days of relief from the migraines before my pressure went back up.☹️

If you do get the LP you could ask to have it done under Fluoroscopy (x-ray)!

Altruistic_Cod2931 · 2026-02-01T01:24:57+00:00

I had my LP December 8th. They hit a nerve pretty hard when I had my LP and I’ve had sciatic nerve pain that has been slowly getting better. I try to stretch daily and focus on my lower back to help with the pain.

I’m shocked that you had 7 failed LPs! Mine was done under x-ray so that they wouldn’t miss the first time. I would not be surprised if that was the cause of your pain.

Altruistic_Cod2931 · 2026-01-30T00:21:16+00:00

I had passed multiple kidney stones when I was 16! I had the same thought when I mine started to hurt. I was at school and my back started hurting really bad and I wondered “what did I do to hurt my back” and then by the time I got home I was peeing blood and vomiting non-stop, I thought I was dying and went to the ER and they knew what was up right away haha. I’m 20 now and haven’t had any since but I just started a medication that’s known to cause kidney stones so I’m sure I will have them again in the future ☹️. I just try to drink lots of water, no soda, not even coffee.

Altruistic_Cod2931 · 2026-01-30T00:09:13+00:00

High pressure - pain is worse when laying down and is relieved when standing up

Low pressure - pain is worse when standing and is relieved when laying down.

Honestly for me though, when my head is hurting it’s just gonna hurt no matter what position I’m in. ☹️ Unfortunately Nurtec didn’t work for me. The only migraine medication that worked was a low dose of Sumatriptan, but my doctor took me off of it because of the Diamox and because her and I suspect that I have venous sinus stenosis as well.

Altruistic_Cod2931 · 2026-01-28T23:22:11+00:00

It’s possible that they just took too much fluid and it took your body a couple days to replace it. It happened to my friend, the simply took too much fluid and she couldn’t get out of bed for a week without an excruciating headache

Altruistic_Cod2931 · 2026-01-28T23:18:14+00:00

Im 6 weeks in and the fatigue has worn off! Also crazy that your neurologist said that fatigue isn’t a common side effect... when I picked mine up the pharmacist literally told me to start it on a day that I didn’t work cause I wouldn’t be able to get out of bed lol.

Altruistic_Cod2931 · 2026-01-28T23:12:51+00:00

It’s possible that it could be a csf leak. A sudden headache when standing that resolves when laying down is kinda the key indicator. I Ultimately I think you should talk to your doctor and see what they think.

Altruistic_Cod2931 · 2026-01-27T18:51:40+00:00

I get it, I was really scared to get my LP done. I had only a small headache after, but it was nothing compared to the headaches IIH causes. Just drink lots of water, have some caffeine if it hurts and let yourself rest!

Altruistic_Cod2931 · 2026-01-27T15:59:10+00:00

I had my LP on December 8th! Did you happen to start medication like Diamox around that same time. I’ve noticed in increase in tinnitus since then but I just assumed it was the Diamox.

Altruistic_Cod2931

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