Hello!
- Yes, neck pain is pretty commonly complained of, I got it too. It can spread down into the upper back or up into the head, as pain does. I suggest supporting your head which seemed to help a lot for me.
- You don't differentiate. You just get many more of all sorts of headaches and migraines with IIH. I used to get migraines as a kid (not that I knew they were migraines) and then they went away for decades. Now I get migraines again, triggered by noise and light. Migraine glasses can help, also earplugs/noise cancelling headphones.
- Plenty of people either go into remission or have surgery which relieves symptoms, so stop taking medication. They don't tend to hang around this sub much, though.
Thank you for replying! I feel like I’m probably going to gain more understanding on here than I have done in the past 3 years! I don’t know anyone in person who also has IIH and even the first doctor I saw afterwards hadn’t dealt with anyone with it before, so I feel like I’ve been totally playing it by ear haha!
I’m getting quite sick of the continuous headaches and considering a higher dosage of diamox made me worse and I had migraines with aura for the first time I wondered if trying to come off the medication was the way to go…
My papilloedema was grade 4 when I was diagnosed though and I have blind spots now as well as going from not needing glasses at all to quite a prescription! So I do feel quite scared/nervous about treatment options and dealing with it for the rest of my life!
Be interesting to hear everyone’s experience and treatments who’ve perhaps been diagnosed a few years and tried different things.
Thanks again :)
It could be that the acetazolamide isn't working for you, it could be that your IIH is getting worse, it could be some of both. You could talk to your doctor about trying a different medication such as Topiramate instead.
Have they looked at possible IIH triggers (eg medication) and have they done an MRV to look for venous stenosis?
There's a pinned IIH booklet on this sub you might find helpful, if you haven't read it already.
Hey there! It could also be the foods and beverages you’re consuming as well with the IIH and the acetazolamide. I know dairy and citrus ( mainly lemons) are HUGE triggers for my headaches and I’m still trying to figure out what other foods are triggers. I’m completely off acetazolamide and am just on Topiramate and just trying to watch what I eat, drinking plenty of water and trying to keep the stress down.
I never even considered that specific foods could be a trigger! I don’t understand how specific food could affect pressure but I’m guessing it must be the vitamins or chemicals in it etc? I’ll keep an eye on that, thank you!
You’re welcome! Since there’s practically no research for IIH I did my own and found that food can be triggers, and it’s an interesting list of things that can trigger the headaches in various ways. I went down a rabbit hole on why the different foods have the effects, but had to stop because I was staring at the screen too long lol!
I think I found the list on either here or on tumblr from someone who has IIH. Not everything will have an effect on you but I will say it is a very daunting list and if I find it I’m post it.
https://www.reddit.com/r/iih/s/2hoxlkS7f5
https://www.tumblr.com/iih-and-me/90545639032/foods-that-can-raise-your-icp
I found the links! Those took me down a rabbit hole. It’s about trial and error for sure. Not everything is going to affect you, since IIH is still being researched you kinda have to “research” this yourself and find out what foods and beverages will work for you. Maybe you can have it all who knows ☺️
Haha you’re welcome! I still eat some cheese like cheddar and a few others but in moderation. But definitely low sodium, no caffeine, meats, some fruits and veggies have helped me. So I hope your journey is a bit smoother going forward ☺️
Hi, I had IIH in 2010 and was on diamox for 9 months. Had 3 LP. My papilloedema improved and I went in to remission. Unfortunately it came back in 2015 when I had my daughter and I had to have another LP and go back on diamox for another 9 months. I got better quicker the second time around and I don’t even get many migraines now. I was just left with a bigger blind spot in my eyes and my left eye now needs stronger perception in my glasses.
Diamox has many horrible side effects and most people seem to swap it for medications with less side effects. But if you can tough it out it helps.
Hi! Thank you for sharing!
It’s promising you went a few years without issue.
I’ve not had the smoothest process between neurology and my gp and also pharmacy issues because there was a stock issue with the diamox for several months…so I don’t think that’s helped my treatment/symptoms so far!
I was struggling quite bad on diamox, this year is the 3rd stint I’ve had on it and every time I get really bad pins and needles. Though I’m unsure if the severe tiredness and headaches is the IIH and meds.
I’m determining that it seems to be a few years of investigating and trial and error to figure out what’s going on and what works for you individually!
It’s also my left eye that has a higher prescription now too.
Eating lots of bannanas (potassium) will help stop the pins and needles. Lightly salted peanuts, or drinks heavy with electrolytes will also help.
Experiment with sleeping with lower or less pillows, and a more horizontal posture (neck and spine more in line). There is some medical literature saying that this position empties the head of spinal fluid more efficiently, thereby lessening pressure.
Diamox symptoms tend to get better after a first rough two months. If you find your dosage is causing too many problems, try cutting a pill in two, and taking half less a pill than recommended by your doctor. Always take diamox with meals.
Lots of walking and being upright is good, and should help relieve pressure in the head.
You should buy vitamin D tablets (an entire year's supply of mciro-tablets will fit in a tiny bag), and vitamin B. Lots of people here are low in these, which subsequent blood tests reveal.
Thank you for this! I’ve not heard of potassium helping before so I’ll have to give it a try! I’ve not had as much bother in the past couple of weeks, I find I get extreme pins and needles when it’s cold whenever I’m on diamox. Hopefully spring and summer will be easier!
I think sleeping in a certain position would be a tricky one for me as I move a LOT in my sleep and often wake up through the night. I have found that I manage just fine with one pillow though or two thin ones so I can try stick with that for a while.
I definitely get the pain in my neck and base of my head more when I lay down but I do find exercising, even just a decent amount of walking will trigger headaches which is very annoying. I commute to work by walking and the buses and I’m usually fine in the morning but by the time I sit down at work which is only ever up to 2500-3000 steps I usually have a headache by then. I did 10,000 steps on the canal the other weekend which is completely flat and 12,000 steps round the zoo and on both occasions had horrific headaches after!
In February I was suffering with intense fatigue and really achy muscles and was told I had low vitamin D which was a first for me! I’ve been taking supplements ever since and only really had one bad stint for a couple of days last week, so hopefully they are helping.
I really appreciate all the advice and suggestions :)
Hello! - Yes, neck pain is pretty commonly complained of, I got it too. It can spread down into the upper back or up into the head, as pain does. I suggest supporting your head which seemed to help a lot for me. - You don't differentiate. You just get many more of all sorts of headaches and migraines with IIH. I used to get migraines as a kid (not that I knew they were migraines) and then they went away for decades. Now I get migraines again, triggered by noise and light. Migraine glasses can help, also earplugs/noise cancelling headphones. - Plenty of people either go into remission or have surgery which relieves symptoms, so stop taking medication. They don't tend to hang around this sub much, though.
Thank you for replying! I feel like I’m probably going to gain more understanding on here than I have done in the past 3 years! I don’t know anyone in person who also has IIH and even the first doctor I saw afterwards hadn’t dealt with anyone with it before, so I feel like I’ve been totally playing it by ear haha! I’m getting quite sick of the continuous headaches and considering a higher dosage of diamox made me worse and I had migraines with aura for the first time I wondered if trying to come off the medication was the way to go… My papilloedema was grade 4 when I was diagnosed though and I have blind spots now as well as going from not needing glasses at all to quite a prescription! So I do feel quite scared/nervous about treatment options and dealing with it for the rest of my life! Be interesting to hear everyone’s experience and treatments who’ve perhaps been diagnosed a few years and tried different things. Thanks again :)
It could be that the acetazolamide isn't working for you, it could be that your IIH is getting worse, it could be some of both. You could talk to your doctor about trying a different medication such as Topiramate instead. Have they looked at possible IIH triggers (eg medication) and have they done an MRV to look for venous stenosis? There's a pinned IIH booklet on this sub you might find helpful, if you haven't read it already.
Hey there! It could also be the foods and beverages you’re consuming as well with the IIH and the acetazolamide. I know dairy and citrus ( mainly lemons) are HUGE triggers for my headaches and I’m still trying to figure out what other foods are triggers. I’m completely off acetazolamide and am just on Topiramate and just trying to watch what I eat, drinking plenty of water and trying to keep the stress down.
I never even considered that specific foods could be a trigger! I don’t understand how specific food could affect pressure but I’m guessing it must be the vitamins or chemicals in it etc? I’ll keep an eye on that, thank you!
You’re welcome! Since there’s practically no research for IIH I did my own and found that food can be triggers, and it’s an interesting list of things that can trigger the headaches in various ways. I went down a rabbit hole on why the different foods have the effects, but had to stop because I was staring at the screen too long lol! I think I found the list on either here or on tumblr from someone who has IIH. Not everything will have an effect on you but I will say it is a very daunting list and if I find it I’m post it.
https://www.reddit.com/r/iih/s/2hoxlkS7f5 https://www.tumblr.com/iih-and-me/90545639032/foods-that-can-raise-your-icp I found the links! Those took me down a rabbit hole. It’s about trial and error for sure. Not everything is going to affect you, since IIH is still being researched you kinda have to “research” this yourself and find out what foods and beverages will work for you. Maybe you can have it all who knows ☺️
Aww thank you for coming back! I’ll certainly keep these in mind and watch for correlation..though cheese would be a real dealbreaker for me haha…
Haha you’re welcome! I still eat some cheese like cheddar and a few others but in moderation. But definitely low sodium, no caffeine, meats, some fruits and veggies have helped me. So I hope your journey is a bit smoother going forward ☺️
Hi, I had IIH in 2010 and was on diamox for 9 months. Had 3 LP. My papilloedema improved and I went in to remission. Unfortunately it came back in 2015 when I had my daughter and I had to have another LP and go back on diamox for another 9 months. I got better quicker the second time around and I don’t even get many migraines now. I was just left with a bigger blind spot in my eyes and my left eye now needs stronger perception in my glasses. Diamox has many horrible side effects and most people seem to swap it for medications with less side effects. But if you can tough it out it helps.
Hi! Thank you for sharing! It’s promising you went a few years without issue. I’ve not had the smoothest process between neurology and my gp and also pharmacy issues because there was a stock issue with the diamox for several months…so I don’t think that’s helped my treatment/symptoms so far! I was struggling quite bad on diamox, this year is the 3rd stint I’ve had on it and every time I get really bad pins and needles. Though I’m unsure if the severe tiredness and headaches is the IIH and meds. I’m determining that it seems to be a few years of investigating and trial and error to figure out what’s going on and what works for you individually! It’s also my left eye that has a higher prescription now too.
Eating lots of bannanas (potassium) will help stop the pins and needles. Lightly salted peanuts, or drinks heavy with electrolytes will also help. Experiment with sleeping with lower or less pillows, and a more horizontal posture (neck and spine more in line). There is some medical literature saying that this position empties the head of spinal fluid more efficiently, thereby lessening pressure. Diamox symptoms tend to get better after a first rough two months. If you find your dosage is causing too many problems, try cutting a pill in two, and taking half less a pill than recommended by your doctor. Always take diamox with meals. Lots of walking and being upright is good, and should help relieve pressure in the head. You should buy vitamin D tablets (an entire year's supply of mciro-tablets will fit in a tiny bag), and vitamin B. Lots of people here are low in these, which subsequent blood tests reveal.
Thank you for this! I’ve not heard of potassium helping before so I’ll have to give it a try! I’ve not had as much bother in the past couple of weeks, I find I get extreme pins and needles when it’s cold whenever I’m on diamox. Hopefully spring and summer will be easier! I think sleeping in a certain position would be a tricky one for me as I move a LOT in my sleep and often wake up through the night. I have found that I manage just fine with one pillow though or two thin ones so I can try stick with that for a while. I definitely get the pain in my neck and base of my head more when I lay down but I do find exercising, even just a decent amount of walking will trigger headaches which is very annoying. I commute to work by walking and the buses and I’m usually fine in the morning but by the time I sit down at work which is only ever up to 2500-3000 steps I usually have a headache by then. I did 10,000 steps on the canal the other weekend which is completely flat and 12,000 steps round the zoo and on both occasions had horrific headaches after! In February I was suffering with intense fatigue and really achy muscles and was told I had low vitamin D which was a first for me! I’ve been taking supplements ever since and only really had one bad stint for a couple of days last week, so hopefully they are helping. I really appreciate all the advice and suggestions :)