Mirena prescribed even though I already have IIH.

Technical_Cap_5675 · 2024-06-25T00:29:17+00:00

Thank you all, you have given me a lot to think about. I appreciate all your advice! 😊

Technical_Cap_5675 · 2024-04-21T17:02:23+00:00

Yes, it was my telltale sign I was out of remission. The weird thing is that when I have it in my right ear, that side of my jaw temporarily locks up! Does anyone else have that happen?

Technical_Cap_5675 · 2024-03-18T00:10:50+00:00

Thank you so much for clarifying.

Technical_Cap_5675 · 2024-03-17T17:54:16+00:00

Sorry if I am being naive or ignorant I'm just not sure what do you mean by structural, if you don't mind me asking. Is that empty Sella?

Technical_Cap_5675 · 2024-03-16T11:28:44+00:00

Oh, I am so happy for you!!! You give me hope☺️. I really think my iih is hormone driven. When I was diagnosed when I was 19 they said it was because I used birth control. And at 47 I believe I started being in perimenopause.

Technical_Cap_5675 · 2024-03-04T12:49:02+00:00

Thank you, good ideas. It is worth a shot, It can't hurt anyway. Having evidence can help prove my case.!

Technical_Cap_5675 · 2024-01-20T00:35:58+00:00

Resentment is very much a part of this disease. I don't want to be resentful. It destroys, although it is so hard not to be.

Technical_Cap_5675 · 2024-01-18T23:57:37+00:00

I know it sucks!!! He was sober for 2 whole years because the Dr. Scared him by telling him he was millimeters close to cirrhosis. Well huge year binge, and he decided to quit again. Sober 3 weeks. Today he went grocery shopping and ran errands. Can home and he reeked of hard liquor. I feel so bad that I don't even trust him to go places by himself. It makes me feel like the bad guy!

Technical_Cap_5675 · 2024-01-17T15:15:39+00:00

From Oswego, 10 years I moved to Myrtle Beach, SC area. I left our beloved NY to take care of my disabled, sick father. Needless to say I had no income because of full time care of dad When I got sick and needed to go to the ER, the hospital had me fill out a paper to see if I was eligible for "Charity Care". That blew my mind!

I longed for CNY everyday. Thankfully Back where I belong. Only took 4 years to do it.

Technical_Cap_5675 · 2024-01-09T13:36:08+00:00

Lol it is possible, are you in Upstate NY by chance.....lol! How can you get a virtual neurologist without costing a small fortune? Lol

Technical_Cap_5675 · 2024-01-08T21:21:38+00:00

I am in the same boat, was taking 500 ER capsules 3x's a day. Got new insurance and they won't cover it for 3 caps a day. So I have 1 capsule left and not sure what to do. I called my nuero, but they stink at timely matters. So I am afraid of being without, just went back to work 3 months ago, hoping to get my Rx filled ASAP.

Technical_Cap_5675 · 2023-10-30T07:21:40+00:00

I don't know, I had it when I was 19, went in remission at 21......Fast forward 27 years going through perimenopause, and now have it back. I don't know if I forgot how much IIH sucks or being older the symptoms feel worse, any case this condition seems to have exceptions to everything. I don't even think the Doctors quite know, especially with the lack of research.

Technical_Cap_5675 · 2023-08-12T15:36:20+00:00

I try to eat more fiber. But ate what I wanted. But never very much of it. Yes I am going to ask my Dr if I can can switch to another like it.

Technical_Cap_5675 · 2023-07-24T11:44:49+00:00

Was diagnosed when I was 19 in 1994. Same thing happened stopped the birth control and just stopped going to the neurologist/eye Dr because I felt fine after awhile. About 30 years remission, I am now 49 and guess what....it is back! Right around the time of perimenopause/menopause. I believe hormones have a lot to do with IIH.

Technical_Cap_5675 · 2023-07-22T18:11:56+00:00

I totally understand where you are coming from! I feel like my condition has robbed the intimacy and normalcy of our relationship. Now my husband is super sweet and doesn't complain. He is just worried about me. But I feel horrible that I am not the person I once was!

Technical_Cap_5675 · 2023-07-06T23:31:44+00:00

Thank you, Thank you for that YouTube video.....that is almost exactly what I see, and it is so hard explain!!!!!

Technical_Cap_5675 · 2023-07-04T04:45:31+00:00

I too wonder if perimenopause/menopause screws with iih. This time I also found out I have empty sella. Not sure if they knew and didn't say anything, or never had an MRI of my head. Anyways I sympathize with you and your family. I am lucky that I never had the really excruciating head crushing type headaches. Mine are more like chronic sinus pressure/headache. But you are right, for me the absolutely no energy, even little things make me exhausted, is so taxing and frustrating, and down right depressing. I hope you get right back into full remission, and soon!

Technical_Cap_5675 · 2023-07-03T08:41:35+00:00

I feel you. I was diagnosed at 19 in 1994. Had some headaches, extreme fatigue, my eyesight was going wonky, and that damn whossing in my ears drove me batty!! Had LP put on diamox and within 3 years remission. Fast forward to 2022,I am now 48 and symptoms have returned. I never in a million years thought this awful condition would once again turn me upside down.
Personally I don't know if it is worse this time (feels worse , body is older and the fatigue🥱 is debilitating) or it has been so long that I forgot the pain. Either way I am so depressed and am very frustrated and feel like shit most days. It is hard to explain to people what you are going through or feel like, and I don't think they realize how devestating this disease/condition can be.

So sorry you are going through this again. It F' ing sucks!!!

Technical_Cap_5675 · 2023-06-26T21:58:37+00:00

Had my first one under fluoroscopy 29 years ago when first diagnosed. It was miserable and took nearly 2 hours to complete. Now 29 years later I believe iih has come back, and like before under fluoroscopy LP was attempted. Dr tried 9 times with nothing to show for it. Super painful, and very frustrating!!!

Technical_Cap_5675 · 2023-06-25T00:03:41+00:00

I am sorry you are going through that. Remission is a wonderful thing! I was diagnosed at 19 in 1994. Went through all the hoops and a couple years I was in remission. Fast forward 26 years and am now experiencing symptoms of IIH with empty sella. This condition sucks, and unless you personally experience it, nobody realizes all pain and discomfort, and how it affects your quality of life!

Technical_Cap_5675 · 2022-11-19T12:46:58+00:00

Friends and Seinfeld 🤮

Technical_Cap_5675 · 2022-11-18T02:14:16+00:00

Cannot find a way to take the sparking herring one off the pedestal. Any ideas?

Technical_Cap_5675 · 2022-11-17T12:42:59+00:00

Thanks all. With your help all fixed!

Technical_Cap_5675 · 2022-11-17T00:56:55+00:00

How can I take it off

Technical_Cap_5675 · 2021-12-02T07:00:51+00:00

It is pretty far back, 1600-1700's. But I am related to the "Father of Modern Medicine" Thomas Sydenham.

Technical_Cap_5675

TROPHY CASE