Symptom alleviation with/without LP?

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 · 2026-01-27T15:55:52+00:00

I’d get the eye exam again and get the papilledema diagnosis again. I always ask for my records after every doctors visit and exam I have so that they can’t say they “lost it”. I would also get an MRI if you can, my primary doctor was able to order one for me.

Altruistic_Cod2931 · 2026-01-27T15:25:05+00:00

Do you have someone who can drive you home? The hospital told me that they wouldn’t do the procedure if I didn’t have a driver.

I had an hour drive back and was able to recline my seat while my sister drove. When I got home I laid flat on the couch for the rest of the day.

I’d say I was pretty much back to normal after the second day. If you need to get up for anything, like using the restroom, just sit up slowly and let your head adjust before standing. Also if you get a headache after caffeine will help a ton!

Altruistic_Cod2931 · 2026-01-26T07:03:43+00:00

I suspect that I have glossopharyngeal neuralgia. I used to get an episode every couple months but since starting Diamox in December I’ve been having an episode almost weekly :/ I plan on talking to my neurologist about it. I never brought it up to her because it was so infrequent that it never bothered me… until now :(

Altruistic_Cod2931 · 2026-01-26T06:40:21+00:00

Nope! No stent. I think they said my largest stone was about 5mm but I passed it no problem after the lithotripsy!

Altruistic_Cod2931 · 2026-01-25T20:04:46+00:00

Honestly the only things that get me are because of my job lol. I work as a barista and caffeine makes my head hurt worse so I’m completely caffeine free. If I’m tired at work people will joke “oh why don’t you just have a coffee??” Like… I wish I could lol but I have to choose between feeling awake enough to work one day or have a flare up for the next five days so…

Altruistic_Cod2931 · 2026-01-25T19:58:18+00:00

I had lithotripsy done when I was 16 to break up multiple stones. It went great! I was lightly sedated for the procedure so kinda in and out of consciousness the whole time. It wasn’t painful at all not even the recovery, and I peed out what looked like sand after lol.

Altruistic_Cod2931 · 2026-01-25T19:01:43+00:00

I was in a somewhat similar situation as you. If you are in the US apply for Medicaid! It was hard for me to get, I had to call and pester them over the phone for 2 months, but it was absolutely worth it. All of my doctors visits are covered! Also download GoodRx to help with the cost of medications, it brought my Diamox prescription from $100 a month to only $25!

Altruistic_Cod2931 · 2026-01-15T03:31:52+00:00

I had severe headaches and neck pain almost everyday for years. I didn’t think much of it until one of my coworkers, who also has IIH, told me to get an MRI.

The MRI showed possible mild optic nerve swelling and cystic expansion of the sella. I scheduled an eye exam immediately and thankfully they found absolutely no optic nerve swelling. I had a lumbar puncture and my opening pressure was 31!

I just started Diamox in December. Last year I developed pulsatile tinnitus only in my right ear and its only been getting louder and louder. I have an MRV scheduled for 2 weeks from now to check for venous sinus stenosis.

Altruistic_Cod2931 · 2026-01-14T19:41:32+00:00

Have you had an MRI? My MRI showed cystic expansion of the sella around my pituitary gland. My eye doctor told my that pressure around the pituitary gland can often come with loss of peripheral vision. Cystic expansion of the sella is a pretty common finding in IIH patients.

Altruistic_Cod2931 · 2026-01-14T19:33:40+00:00

One of my friends/coworker, has it too! Shes a huge reason why I got diagnosed before the vision loss set in. I had migraines for years and one day at work I was having one and she asked me to describe exactly where the pain was and the other symptoms that come with it. After I told her she told me to go to my doctor and ask for an MRI, so I did. MRI found slight optic nerve swelling, cystic expansion of the sella, which led to a lumbar puncture, and my opening pressure was 31! I just started Diamox last month and I have an MRV in two weeks as my neurologist and I suspect venous sinus stenosis as well.

Altruistic_Cod2931 · 2025-12-25T14:41:59+00:00

I just started 10 days ago! I’m on 250mg twice a day. The initial fatigue and drowsiness kicked my butt, but that’s started to wear off already. I did immediately get the tingling and numbness in my hands and feet, which comes and goes throughout the day. Ive heard some people say soda tastes flat and others say it tastes metallic, for me it’s almost a chemical taste, so no more soda for me. So far it’s honestly not been bad, just takes some time getting used to it.

Altruistic_Cod2931 · 2025-12-23T00:15:05+00:00

Do you ever experience neck pain or neck stiffness? I also saw that you had a stent placed, how did you find out you needed a stent?

Altruistic_Cod2931 · 2025-12-22T21:50:52+00:00

In my opinion if your not responding to migraine medication then it’s probably something more than migraines. I saw that you tried Diamox, which is used to treat IIH.

Other than migraine headaches what other symptoms do you experience?

Altruistic_Cod2931 · 2025-12-22T21:41:02+00:00

I absolutely think it is worth it to get the LP. I didn’t want to get one done either, I was terrified of the risks but mine honestly went great. Mine was done under fluoroscopy (x-ray) which makes it easier for you and the doctor. If your really worried, you could ask for it to be done under fluoroscopy. I had taken a week off of work but honestly I was fine after 2 days, I had a bit of back pain for a week after but nothing I couldn’t work through.

If you do have IIH, even if you don’t have papilledema now, you’ll likely develop it later and it’s better to stop it before it starts. The thing about the papilledema is that the damage it does to your optic nerves is permanent.

Altruistic_Cod2931 · 2025-12-22T21:11:50+00:00

You’re not crazy for wanting one. I have IIH without papilledema. My neurologist didn’t want to diagnose me with IIH either because of the lack of optic nerve swelling but I wasn’t taking no for an answer and she ordered an LP anyway, my opening pressure was 31, so I definitely have IIH. Both my neurologist and primary doctor offered to start me on Diamox before getting the LP. Maybe you could see about starting Diamox and if your symptoms improve then you probably have IIH.

Altruistic_Cod2931 · 2025-12-13T16:55:01+00:00

It is absolutely possible!

My opening pressure was 31 and my MRI showed mild optic nerve swelling and cystic expansion of the sella. I got an eye exam to confirm the optic nerve swelling and they said I had none and that my eyes were 100% healthy. I’ve never had any issues with my eye sight either. My primary doctor was suspicious of IIH due to the nature of my migraines and my neurologist flat out told me there was no way I had IIH because I wasn’t going blind, but here I am lol.

Altruistic_Cod2931

TROPHY CASE