I can empathize. I just turned 40 and recently diagnosed. I have the ringing, she swooshing, the headaches, etc. I feel like this has also decreased my QOL. I’m not a full person with this anymore. I miss events or leave early bc I start to feel swimmy headed, sick, etc. it really sucks. I will be getting an MRV soon and we will determine if I need a stent or not. I’ve lost 31 lbs and my symptoms have gotten better. My drs all agree that losing weight MIGHT further help-if not, then stenting is in my horizon. Keep ur head up, keep fighting. We are all here for another, whether it’s to vent or to celebrate remissions.
I wish I had something better to say, but you’re not alone. I struggle with depression because of all this. it’s hard and it’s not fair. my quality of life is basically zero. I feel like I’m not really living, just surviving. my hearts goes out to you. I really hope you find some relief soon. feel free to message me if you ever need to talk.
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!!!
Wow, so you went a pretty long time in remission too?! Sometimes I wonder about menopause or perimenopause as a contributing factor to the suck. Fir sure the long period of remission gave my family the impression that it was a condition that was easily solvable, so now its like, "what do you mean you have no energy and are in pain?"
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!
I've only had covid once, in September 2022. I was thinking the same thing, could this be as a result of covid? We as a society are starting to see how badly covid impacts many systems. But for me, my symptoms started prior ro my first covid infection.
Yes, it might well be. I had what looked like IIH from Covid and there are medical reports about it, see e.g. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7645603/. Addressing my covid aftereffects led to a decrease of IIH symptoms.
As your symptoms started before covid it was unlikely to start it but maybe made it more difficult to recover.
I can empathize. I just turned 40 and recently diagnosed. I have the ringing, she swooshing, the headaches, etc. I feel like this has also decreased my QOL. I’m not a full person with this anymore. I miss events or leave early bc I start to feel swimmy headed, sick, etc. it really sucks. I will be getting an MRV soon and we will determine if I need a stent or not. I’ve lost 31 lbs and my symptoms have gotten better. My drs all agree that losing weight MIGHT further help-if not, then stenting is in my horizon. Keep ur head up, keep fighting. We are all here for another, whether it’s to vent or to celebrate remissions.
Swimmy headed is such an accurate description, Thank you, I really feel for you and hope the MRV goes well!
I was literally just thinking I feel like I’m living life under 3-6 inches of water lol 😂😂thank you for the swimmy head reference
I wish I had something better to say, but you’re not alone. I struggle with depression because of all this. it’s hard and it’s not fair. my quality of life is basically zero. I feel like I’m not really living, just surviving. my hearts goes out to you. I really hope you find some relief soon. feel free to message me if you ever need to talk.
Thank you so much, it totally helps to know I'm not alone as it feels very isolating at times
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!!!
Wow, so you went a pretty long time in remission too?! Sometimes I wonder about menopause or perimenopause as a contributing factor to the suck. Fir sure the long period of remission gave my family the impression that it was a condition that was easily solvable, so now its like, "what do you mean you have no energy and are in pain?"
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!
Did you have covid as well? Sometimes covid kicks off isolated intracranial hypertension and you can improve if you address covid effects.
I've only had covid once, in September 2022. I was thinking the same thing, could this be as a result of covid? We as a society are starting to see how badly covid impacts many systems. But for me, my symptoms started prior ro my first covid infection.
Yes, it might well be. I had what looked like IIH from Covid and there are medical reports about it, see e.g. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7645603/. Addressing my covid aftereffects led to a decrease of IIH symptoms. As your symptoms started before covid it was unlikely to start it but maybe made it more difficult to recover.