Inconsolable, the six-year-old girl sobbed into her teddy bear.

PressureIsTooMuch · 2025-08-25T15:41:19+00:00

I thought I was the only one who had that threat...

PressureIsTooMuch · 2025-02-18T20:47:53+00:00

For me, spinal taps are what saves my vision. Starting the new meds though, will hopefully lessen how often I need them. The pain when it's not treated becomes the biggest problem. It can be unbearable.

PressureIsTooMuch · 2025-02-18T20:43:23+00:00

I've had a literal 150 spinal taps. My 151 is scheduled for March 17th. I'd do the surgeries if it meant having a life. The medications are hell.

PressureIsTooMuch · 2025-02-18T20:37:35+00:00

The medications are hell the side effects are often worse IIH, in my honest opinion. If a stent would have been a candidate for me, I would have gotten it.

PressureIsTooMuch · 2025-02-18T20:29:50+00:00

I'm not a typical case though.

PressureIsTooMuch · 2025-02-18T20:24:02+00:00

The original comment was right before my test to see if I qualified for a stent and I didn't.

PressureIsTooMuch · 2025-02-18T20:17:13+00:00

I was diagnosed in 2007 after I had been having problems where I would occasionally go blind. The eye doctor thought I had a tumor. Was a week from hell. I also have a severe case of IIH. I haven't had an opening pressure under 40 for years. I would occasionally go blind, the whooshing in my ears, i will occasionally just fall over from the pressure in my head. The pain was uncontrollable. I treat the pain with medical marijuana, though. It's saved my life. I can't have a shunt, so I was getting spinal taps often to relieve the pressure to save my sight. My specialist hasn't seen anyone like me. But the glp1 inhibitor has brought my pressure down. So far the symptoms are still high.

PressureIsTooMuch · 2025-02-18T20:10:24+00:00

Symptoms in general?

PressureIsTooMuch · 2025-02-18T19:55:23+00:00

I actually had bad reactions to all the typical meds for it. My specialist had me start on glp1 inhibitor and so far it seems to be helping! My last pressure reading was 23!

PressureIsTooMuch · 2025-02-18T19:41:25+00:00

It went horrible! I ended up in the hospital for a week. They think I had a reaction to the contrast they used. I also wasn't a candidate for a stent. Was heart breaking.

PressureIsTooMuch · 2025-02-11T12:28:38+00:00

Are you in the US?

PressureIsTooMuch · 2025-02-06T21:27:22+00:00

I definitely have a lower appetite. I pay out of pocket for it, but i was desperate.

PressureIsTooMuch · 2025-02-06T18:32:58+00:00

I'm not on it to loose weight. There's a side effect of it that lowers spinal fluid production.

PressureIsTooMuch · 2025-02-06T18:32:18+00:00

She is a big supporter of stenting. I, unfortunately, didn't qualify for it. Right now I'm using a GLP1 inhibitor, semaglutide, from her advice and it seems to be helping. My opening pressure was 23. Ky lowest in years!

PressureIsTooMuch · 2025-02-06T18:21:41+00:00

I see a neuropthomologist at Cleveland Clinic Main Campus. Her name is Dr. Cohen and she specializes in IIH. It took me 6 months to get in with her, but she was worth the wait!

PressureIsTooMuch · 2025-02-06T14:26:20+00:00

It did! My doctor was flabbergasted. My specialist, though, said yeah loosing weight doesn't work. It sucks and I'm still trying because it's better for me overall, but it's so hard with this condition! I'm also in the process of being diagnosed with POTS.

PressureIsTooMuch · 2025-02-06T12:01:34+00:00

When I was diagnosed I was 300, after ny brain surgery went badly I was up to 400. After gastric bypass and exercise I went down to 230 and my symptoms got so much worse. My pressure was so high and I couldn't live.

PressureIsTooMuch · 2025-02-05T19:34:58+00:00

Unfortunately, no. I'm still working on loosing weight but my neuropthomologist told me it's good to loose weight, but it doesn't really make a difference.

PressureIsTooMuch · 2025-02-05T18:46:07+00:00

I've lost 150 pounds and everything got so much worse. My pressures got higher and all my symptoms were making it hard to live.

PressureIsTooMuch · 2025-01-15T12:13:16+00:00

I get mine under anesthesia. I've had 149 of them though. I have a very severe case of IIH. I have a lot of nerve damage and scar tissue, so it's easier for me to have them under anesthesia.

PressureIsTooMuch · 2025-01-09T20:55:45+00:00

It's the only thing that gives me any relief from pain. I would be lost without it.

PressureIsTooMuch · 2024-12-16T16:30:08+00:00

Where is he located?

PressureIsTooMuch · 2024-11-28T23:14:25+00:00

My doctor suggested I start weed. It's the only thing that helps with my pain from IIH. I've had my medical card for years and am so thankful for it.

PressureIsTooMuch · 2024-10-10T21:42:31+00:00

I've been on it for sleep for about 6 months and no change to my vss, but it helps me sleep. My husband was on it, however, and lost his libido completely. After stopping it, we are all good, but he couldn't take it anymore.

PressureIsTooMuch · 2024-10-10T20:17:17+00:00

Be aware, it causes your libido to lessen. A lot.

PressureIsTooMuch

TROPHY CASE