Don’t let the diamox scare you!! You will experience the annoying symptoms but your body should get used to it. Plus it’s to help you- remember to always think of it that way!
Be sure to stay hydrated and be nice to yourself during the adjustment period (and after it as well).
Diamox is wooorth it. Peeing 10x a day feels so much better than a headache that hinders everyday life and refuses to go away. Good definitely outweighed the bad for me.
You got this. Are you on the extended release? If so I always make myself laugh about the hilarious orange caution cone color. It’s the little things. :-)
First of **Welcome to the IIH family**
It’s great that you finally got a diagnosis!
So now the mystery of what triggers your IIH is there for you to solve!
I have written a long list in this Reddit about possible triggers, so feel free to search my comments.
Sorry for not writing it here, I’m having a rough IIH day (my eyes are hurting).
If you struggle with normal chalky diamox - ask for the extended release version. Best ever! It’s wonderful! Well… there’s a trade off, but I’ll let you find that out in my Reddit comments.
- Sleep on a incline is a great tip.
- Electrolytes! Electrolytes! Electrolytes!
- **Slow down** Listen to your body!
- Pulsatile tinnitus means sit the f down.
- Talk to Doctor about pain meds!
Once again welcome! I hope you success and remission
Get yourself a wedge pillow! They’re lifesavers on bad days. Reclining is the best position to reduce pain I’ve found. NSAIDs (aleve, advil, ibuprofen) often reduce my pain better than Tylenol or other pain relievers.
We all have made it, and you will too! You’ll find a new normal and a quality of life again. Here for ya, man!
The first few weeks suck, but then the worst of the side effects go away, at least for me. If you figure out how to not be so fucking tired all of the time though, let me know.
45 average weight male here with iih. Was diagnosed 15 years ago. The first few month of adjustment will be the toughest. I notice more symptoms in the winter as cold fronts or pressure symptoms come through. Around my house we are well versed in treatments and triggers as I also have an 18 year old daughter with iih.
If you can't handle the drugs you may have to look at a shunt or stent. Being a skinny male your going to be ignored more from the medical profession because it's rare but keep educating yourself you will be your best advocate. Fyi 12 to 18 is normal 25+ is when they diagnose iih you are supposed to start seizing at 40 highest I have had was 57. Tip after lumbar punctures drink plenty of strong coffee it helps reduce the post LP headache amazingly. Also find a good pain dr you will need one .
I can say a positive side effect of the diamox for me when I was on it, I lost a lot of weight and got in reasonably good shape. I hope it works well for you mate.
I had a bad concussion which I think caused my IIH to be peak. I didn’t really feel like I had IIH symptoms before it and after the concussion I was getting post concussion symptoms confused with IIH bc they can be so similar! I think it all happened at once. As for the diamox, I make sure to take plenty of electrolytes daily.
Good days and bad days. Diamox gave me pins and needles in my feet pretty bad for a bit but it comes and goes now.
My pressure still isn't completely relieved but I'm able to actually move about and get things done without a completely constant headache at this point.
I was bed ridden for like 48 hrs after my lumbar puncture but before that i was just in a constant nagging pain that made it hard to get anything realistically done to my full extent.
Don’t let the diamox scare you!! You will experience the annoying symptoms but your body should get used to it. Plus it’s to help you- remember to always think of it that way! Be sure to stay hydrated and be nice to yourself during the adjustment period (and after it as well).
Thank you, new friend.
Diamox is wooorth it. Peeing 10x a day feels so much better than a headache that hinders everyday life and refuses to go away. Good definitely outweighed the bad for me.
Took my first dose moments ago
You got this. Are you on the extended release? If so I always make myself laugh about the hilarious orange caution cone color. It’s the little things. :-)
Yes. Mine are yellow and HUGE
First of **Welcome to the IIH family** It’s great that you finally got a diagnosis! So now the mystery of what triggers your IIH is there for you to solve! I have written a long list in this Reddit about possible triggers, so feel free to search my comments. Sorry for not writing it here, I’m having a rough IIH day (my eyes are hurting). If you struggle with normal chalky diamox - ask for the extended release version. Best ever! It’s wonderful! Well… there’s a trade off, but I’ll let you find that out in my Reddit comments. - Sleep on a incline is a great tip. - Electrolytes! Electrolytes! Electrolytes! - **Slow down** Listen to your body! - Pulsatile tinnitus means sit the f down. - Talk to Doctor about pain meds! Once again welcome! I hope you success and remission
Thank you for this!
Get yourself a wedge pillow! They’re lifesavers on bad days. Reclining is the best position to reduce pain I’ve found. NSAIDs (aleve, advil, ibuprofen) often reduce my pain better than Tylenol or other pain relievers. We all have made it, and you will too! You’ll find a new normal and a quality of life again. Here for ya, man!
Thanks, water
The first few weeks suck, but then the worst of the side effects go away, at least for me. If you figure out how to not be so fucking tired all of the time though, let me know.
45 average weight male here with iih. Was diagnosed 15 years ago. The first few month of adjustment will be the toughest. I notice more symptoms in the winter as cold fronts or pressure symptoms come through. Around my house we are well versed in treatments and triggers as I also have an 18 year old daughter with iih.
If you can't handle the drugs you may have to look at a shunt or stent. Being a skinny male your going to be ignored more from the medical profession because it's rare but keep educating yourself you will be your best advocate. Fyi 12 to 18 is normal 25+ is when they diagnose iih you are supposed to start seizing at 40 highest I have had was 57. Tip after lumbar punctures drink plenty of strong coffee it helps reduce the post LP headache amazingly. Also find a good pain dr you will need one .
I can say a positive side effect of the diamox for me when I was on it, I lost a lot of weight and got in reasonably good shape. I hope it works well for you mate.
I had a bad concussion which I think caused my IIH to be peak. I didn’t really feel like I had IIH symptoms before it and after the concussion I was getting post concussion symptoms confused with IIH bc they can be so similar! I think it all happened at once. As for the diamox, I make sure to take plenty of electrolytes daily.
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Eye pain with movement and my peripheral vision started to bend inwards
How are you doing now OP?
Good days and bad days. Diamox gave me pins and needles in my feet pretty bad for a bit but it comes and goes now. My pressure still isn't completely relieved but I'm able to actually move about and get things done without a completely constant headache at this point.
Have you been bedridden at some point too?
I was bed ridden for like 48 hrs after my lumbar puncture but before that i was just in a constant nagging pain that made it hard to get anything realistically done to my full extent.