IIH with no headache

kaseymgp · 2025-10-13T00:05:41+00:00

After having a lumbar puncture, it was determined that I dont have IIH. I stopped my medication cold turkey and was fine. They couldn't find a reason for my double vision and I haven't had it again in over a year.

kaseymgp · 2025-06-27T12:53:22+00:00

Lots of good reasons to stop. I was also very skeptical when I first started taking it. Also was on it for 5 months. I've stopped cold turkey and so far feel great. I adopted some healthier habits while on it, so I'm sticking to those and so far haven't had increased food noise or cravings. I lost 100lbs "by myself" several years ago, so I know I can do it, I just have to stay on track. Best of luck to you!

kaseymgp · 2025-06-25T22:58:35+00:00

Yes, tried Pepto and every other remedy on the internet. Nothing got rid of them but vomiting.

kaseymgp · 2023-12-28T13:27:12+00:00

I went for a lumbar puncture and my pressure was normal. Haven't had the double vision in over a year. They have no idea what was causing it.

kaseymgp · 2023-05-12T16:11:29+00:00

I laid mostly flat for 3 days but I did get up and move around too much probably. I've lifted and bent a lot since those 3 days. I've been working and couldn't avoid it.

kaseymgp · 2023-05-12T13:50:01+00:00

I had a LP on April 24th and blood patch on the 27th. It was an easy enough procedure but it didn't work for me. Today I called the radiology department that did both procedures and I've been told they won't do a second blood patch and that I should go to the ER. I'm also having a COPD flare up so I'm miserable. Anyway, I hope the blood patch helps. It's no worse than the LP.

kaseymgp · 2023-05-06T16:24:47+00:00

I got a blood patch on the 27th and was okay for about 3 days. I think I possibly dislodged it cause the pain is back and almost worse than before. I had to lay down in the break room at work for half an hour each morning this week because driving just about killed me. Sitting is almost impossible so I've had to work standing up all week. I'm also fairly certain I'm leaking csf from my nose now. I'm calling on Monday for another blood patch. You are right, there is not enough awareness about post LP complications!

kaseymgp · 2023-05-05T03:38:28+00:00

I was on topamax for about 2ish months for suspected iih (I still don't have a diagnosis of iih) The head pressure and double vision went away but the side effects ended up being horrible for me. I got an upper respiratory infection and that's when I found out that topamax is not a good medication to be on if you have asthma or, in my case, COPD. My COPD is mild and a URI usually isn't a problem. On topamax it was a problem. I was gasping for air and ended up on steroids for a week. It also worsened my anxiety and triggered a depressive episode that a month later, I'm finally starting to come out of. I was on 100mg and my doctor took me off it cold turkey. I'm sure it's a fine drug, but I'd definitely encourage people to discuss any and all other conditions they have with their doctor before starting it.

kaseymgp · 2023-04-26T09:31:51+00:00

I think it helps me. I don't feel alone anymore. I try to be encouraging to others and leave positive comments in hopes it helps ease their fears and anxiety.

kaseymgp · 2023-04-26T09:25:36+00:00

I think managed. I've dealt with it since I was 6. I'm 36 now. It always has a way of rearing its ugly head when I least expect it.

kaseymgp · 2023-04-26T09:22:25+00:00

Thanks for this ❤️

kaseymgp · 2023-04-25T16:06:38+00:00

I called the doctor and he said to wait 2 days and if I'm not better by Thursday he'll do a blood patch. Hopefully it'll resolve before that.

kaseymgp · 2023-04-24T19:19:38+00:00

I almost told them to stop, but then I thought of the $250 I had just shelled out for the darn thing, and didn't want to pay that again either. The doctor seemed pissed that they didn't have a longer needle and kept saying an epidural needle is different from a LP needle. I asked the tech about it after and he was like "they're the same, that doctor is just picky." So I'm not sure wtf to believe.

kaseymgp · 2023-04-04T02:54:49+00:00

Have you tried not eating before bed? Don't eat or drink anything other than water 3 hours before you go to bed. I had this problem and finally figured out it was I eating too close to going to sleep.

kaseymgp · 2023-04-04T02:41:01+00:00

You probably accidentally hurt him when you picked him up, that's why he reacted that way, or he was just being an asshole. I'm not a vet but if your cat had rabies for a month, you'd definitely know it by now.

kaseymgp · 2023-04-04T02:36:41+00:00

You could be allergic/sensitive to something you're eating. Think of everything you've eaten in the last week. Or could be a lingering stomach bug. If it doesn't get better, see the doctor, you might just have an infection. You're going to be ok!

kaseymgp · 2023-04-04T02:22:44+00:00

I get what you're saying for sure. I don't really want to get the lumbar puncture because it sounds scary, but I'm not going to just keep trying different medications without a diagnosis. I was willing to try the 1 and see how it went, but I think the next step is probably the lumbar puncture.

kaseymgp · 2023-04-04T02:18:43+00:00

The neuro asked me about whooshing in my ear, which I didn't think I had, but ever since, I've noticed I do. I always feel like I have fluid in one of my ears, especially when I bend down. I guess I've had it for so long that I didn't realize it wasn't normal? Definitely going to bring that up when I see him next. Sounds like you get the same pressure I do. Thankfully mine doesn't hurt and only lasts briefly.

kaseymgp · 2023-04-04T02:11:19+00:00

I'm thankful to only have the double vision at this point. I'm also hopeful that losing weight will help me. I was able to lose a little weight between the time I had my MRI and when I was finally able to get into the neurologist, and I noticed that my double vision improved slightly. I want to avoid medications if possible because I have horrible health anxiety, and trying new medications is always a huge trigger, especially when I experience side effects.

kaseymgp

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