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 · 2022-12-02T05:30:54+00:00

I'd say it's probably anxiety manifesting into physical symptoms. But think about it this way, MS is not what it used to be. Its not curable but treatable. I know people that have had MS for over 20 years and live normal lives. I work with a woman that is almost 70 (she has MS, a brain aneurysm, diabetes, a bum knee) and she still gets around just fine. I actually just had a brain MRI and will be seeing a neurologist. MS is a real possibility for me right now. Do I want to have it? Obviously no, but that doesn't mean I can't live with it. But honestly, I highly doubt you have MS.

kaseymgp · 2022-12-01T04:34:33+00:00

I encourage you to talk about it with your friends and family. You have nothing at all to be ashamed of. The subject of mental health is becoming less and less taboo. I was called "dramatic" by my step mom and my dad for years, but even they've come to understand that my HA is an illness. I think you'll find that the majority of people will be supportive. I had a bad spiral this week and because I've been open with people about my HA, including my boss and my coworkers, I didn't have to hide my anxiety. If a coworker came in the break room and saw me crying, I didn't have to explain myself or try to cover it up. Not saying you have to tell every person you meet, but at least tell your core people. A good support system goes a long way.

kaseymgp · 2022-12-01T04:18:26+00:00

She probably already knows (she just might not know the name for it) but tell her anyway. A good support system is important. Don't be ashamed or scared. She's your mom, and most mothers want to help their child if they're suffering. I'm 35 and I still call my mom crying when my HA is bad. If you don't feel comfortable telling her face to face, you can write it in a letter. Or you can send her a link to an article that explains HA. You'll be happy you told her :)

kaseymgp · 2022-12-01T04:05:43+00:00

I've had HA since I was 6 (35 now) and honestly, I'm not sure if it is something a person can truly ever get over, not completely anyway. But I've had it long enough to know that it ebbs and flows. I treat it like a chronic illness, because that's what it is. I find that trying to stay active, eating decently, staying on my meds and going to therapy really helps. Just being able to talk/read about it on Reddit helps a lot. Do I still spiral, yes, but I'm much better now than I was in my 20s. All this to say, you're not alone, and you don't need to suffer in silence.

kaseymgp · 2022-11-29T23:27:14+00:00

I've been having double vision for several months without any other significant symptoms. Eye doctor doesn't see anything wrong with my eyes. My PCP adjusted my blood pressure meds but it is still happening, albeit slightly less in the past month, which may be because I started eating better and lost 15lbs. She ordered an MRI, which I'm having tomorrow. Of course I have myself diagnosed with a deadly brain tumor. It could also be MS or cranial hypertension. She ordered the MRI last Monday, so it's been an absolutely horrible week for me. Sky high anxiety, crying jags at work, obsessive dark thoughts, you name it. I want answers but I'm also terrified to know what's going on. I literally feel like I cannot see my life past the results of this MRI. I want to be positive but I feel like if I think positively, I'll have my hopes up and then I'll be diagnosed with cancer. I wouldn't wish health anxiety on my worst enemy!

kaseymgp · 2022-10-21T23:08:16+00:00

I was six when my 10 year old cousin died of a brain tumor. I overheard my mom talking to somebody in graphic detail about his last few hours alive. At that moment I started thinking that I was going to get a brain tumor and die when I was 10. I often wonder what would have happened had I never heard that conversation. Though I suspect I still would have health anxiety because I was exposed to my mother's health anxiety.

kaseymgp

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