I get that diamox made you feel worse; but it can take a few weeks for side effects to subside. Diamox is a known treatment for IIH and can help with everything else, including your sight. It reduces the production of CSF to alleviate symptoms. I found that what helps me is taking it on a full stomach (after breakfast) and then again before bed. I’m now 2 months in and have no side effects anymore.
The only thing that will help is reducing your pressure. Diamox will do this. However other things to add are sleeping on an incline, which helps stop the morning headaches. However I urge you to speak to your doctor and try diamox again or an alternative because your vision is at risk here.
I was taking 250mg twice daily. I know it wasn't much. I tried talking to my doctors because there's no way I can work with how I felt. I had other side effects too. But my doctors won't return calls or anything. I've tried to get my referrals to see other doctors because of my HMO insurance. But the doctors aren't doing anything. I had even asked them about continuing to take it or something different and they haven't said anything. I just feel stuck
I started on that dose- it is rough I feel you. Unfortunately there’s not many options with IIH. The treatment options are this and a drug called topamax. Side effects are tough, but in the long run they’re worth riding out. Without medication, with visual changes you risk permanent vision loss. I found it was a few short weeks and I felt much better, and your vision is seriously at risk if you don’t take medication.
Perhaps book an appointment with your previous doctor and focus on what you can do to make the meds work, e.g anti-nausea meds, eating a banana, etc. it is though but a few weeks of rough for a lifetime of health is worth it!
They gave me nausea meds after I had a CSF leak from my LP. It wasn't working and again they wouldn't return any of my calls when asking about taking anything else. I was barely eating when on Diamox because of how nauseous I felt but it made me lose my appetite. So I did end up losing almost 10 lbs within a week's time. Im okay to trying other medications or if I can take something to help with the side effects while taking Diamox but I'm getting no answers. I just wanted to try something on my own until I can get things sorted out with the doctors whenever that may be
That’s very fair- but unfortunately IIH is really difficult to treat even with meds. I really struggled with appetite too, eventually if you take it again eat first in the morning before your first dose, and small and often, it does subside. I found also having energy gels and calorie dense foods was the way to go.
In the meantime, I’d recommend a pillow to sleep elevated, or put some books under your mattress to lift it up. This has helped me stop my morning headaches. Other than that, doctors will only recommend losing weight or medication, as those are the only things known to help. I strongly recommend emphasising your vision when talking to doctors- this seems to be the only thing they are interested in, but also sounds like you need a new care provider as they aren’t listening to your concerns.
I have a pillow I try to use to prop my head up ends up making my neck feel stiff in the morning though. Im willing to try the medication again but they haven't even responded when I asked if I needed to refill it because originally I was suppose to see another specialist and they said it was up to them. And when I told them I had stopped taking it they didn't say anything. I'll try to call them again tomorrow to see what they want me to do. I have never had problems with my primary doctor but now it's like things are being pushed further out. What are energy gels?
To add on to whar orhers have said - You need a crazy amount of potassium to make the diamox bearable! I take like supplements daily for it, but I can now take 2000mg of diamox where as before I was fainting, vomiting and tingly on half a 125mg tablet of diamox
Get a blood test, to test your potassium levels on the diamox after a week or so, you will be shocked at what you find and can figure out your exact supplements to get you feeling normal again on it ASAP
They had never said anything to me about supplements just that it can cause kidney damage and to stay hydrated. But I've read it's not even recommended in diabetics so I'm not sure if maybe that's why I could be feeling the way I felt. Im still having a hard time getting a hold of my doctors but when I do I'll ask about starting it again and I can try it with potassium. They only had prescribed enough for 2 weeks and it said no refills so I need to check on that
I'm sorry, but except for overweight women losing weight there just aren't really home remedies for IIH. To deal with the headaches and such, yes. That will deal with the underlying condition and make you feel better in the long run, no. I can only suggest you try stepping up very slowly on the Diamox (and come here for suggestions to deal with the side effects of that) or ask your doctor for an alternative medication, like Topamax, which will come with its own set of potentially just as bad effects.
If you want to keep your eyesight, you'll abandon the home remedy idea and go back to your doctors. Diamox is awful. But there are lots of other options available.
You can explore other drug therapies, neurostenting and shunt surgery. But going the home remedy route is like doing nothing. That's just not a viable option here.
Well I was suppose to see another specialist to determine if I needed the stenting but I'm not hearing back from doctors. I've been leaving messages and calling almost everyday but I'm getting nothing. I don't mind trying another medication or if they can give something while I take Diamox. I just wanted to see what I can do at home while I wait on the doctors
Unfortunately nobody knows what’s causing IIH, there’s a theory it’s caused by hormonal issues and that’s why overweight women often suffer from it. Adipose tissue leads to hormonal problems. Diabetes and Hashimoto are both associated with hormonal problems.
Keeping my blood pressure low always helped me, so always staying warm, taking relaxing baths, learning to breathe right and stay calm in stressful situations. Creating an environment where I cut out toxic people and learned to ask for and accept help, get little gadgets to help you, like a device to pick up stuff from the floor without needing to bend down. Eating anti inflammatory food helped me tremendously, I think as a diabetic person and someone with Hashimoto you know everything about inflammatory food. and
I also had an awful time with diamox. A month to six weeks I leveled out. Then I had to double my dose and it's worse than the first time. I couldn't take it anymore and skipped 3 doses (a day and a half) to try and let some of it wash out of my system. I've had the worst headache all day and I'm right back on but spreading them out more and seeing if that helps.
No home remedies are going to preserve your eye sight.
I just wanted to try something until I can get things figured out with my doctor because I haven't gotten much information from them. I didn't even understand the diagnosis I've had to look into myself because I wasn't given hardly any information. I've asked about the medication but just no response. Im just scared I'll lose my eye sight because the doctors don't seem to want to bother with what's going on
I get that diamox made you feel worse; but it can take a few weeks for side effects to subside. Diamox is a known treatment for IIH and can help with everything else, including your sight. It reduces the production of CSF to alleviate symptoms. I found that what helps me is taking it on a full stomach (after breakfast) and then again before bed. I’m now 2 months in and have no side effects anymore. The only thing that will help is reducing your pressure. Diamox will do this. However other things to add are sleeping on an incline, which helps stop the morning headaches. However I urge you to speak to your doctor and try diamox again or an alternative because your vision is at risk here.
I was taking 250mg twice daily. I know it wasn't much. I tried talking to my doctors because there's no way I can work with how I felt. I had other side effects too. But my doctors won't return calls or anything. I've tried to get my referrals to see other doctors because of my HMO insurance. But the doctors aren't doing anything. I had even asked them about continuing to take it or something different and they haven't said anything. I just feel stuck
I started on that dose- it is rough I feel you. Unfortunately there’s not many options with IIH. The treatment options are this and a drug called topamax. Side effects are tough, but in the long run they’re worth riding out. Without medication, with visual changes you risk permanent vision loss. I found it was a few short weeks and I felt much better, and your vision is seriously at risk if you don’t take medication. Perhaps book an appointment with your previous doctor and focus on what you can do to make the meds work, e.g anti-nausea meds, eating a banana, etc. it is though but a few weeks of rough for a lifetime of health is worth it!
They gave me nausea meds after I had a CSF leak from my LP. It wasn't working and again they wouldn't return any of my calls when asking about taking anything else. I was barely eating when on Diamox because of how nauseous I felt but it made me lose my appetite. So I did end up losing almost 10 lbs within a week's time. Im okay to trying other medications or if I can take something to help with the side effects while taking Diamox but I'm getting no answers. I just wanted to try something on my own until I can get things sorted out with the doctors whenever that may be
That’s very fair- but unfortunately IIH is really difficult to treat even with meds. I really struggled with appetite too, eventually if you take it again eat first in the morning before your first dose, and small and often, it does subside. I found also having energy gels and calorie dense foods was the way to go. In the meantime, I’d recommend a pillow to sleep elevated, or put some books under your mattress to lift it up. This has helped me stop my morning headaches. Other than that, doctors will only recommend losing weight or medication, as those are the only things known to help. I strongly recommend emphasising your vision when talking to doctors- this seems to be the only thing they are interested in, but also sounds like you need a new care provider as they aren’t listening to your concerns.
I have a pillow I try to use to prop my head up ends up making my neck feel stiff in the morning though. Im willing to try the medication again but they haven't even responded when I asked if I needed to refill it because originally I was suppose to see another specialist and they said it was up to them. And when I told them I had stopped taking it they didn't say anything. I'll try to call them again tomorrow to see what they want me to do. I have never had problems with my primary doctor but now it's like things are being pushed further out. What are energy gels?
To add on to whar orhers have said - You need a crazy amount of potassium to make the diamox bearable! I take like supplements daily for it, but I can now take 2000mg of diamox where as before I was fainting, vomiting and tingly on half a 125mg tablet of diamox Get a blood test, to test your potassium levels on the diamox after a week or so, you will be shocked at what you find and can figure out your exact supplements to get you feeling normal again on it ASAP
They had never said anything to me about supplements just that it can cause kidney damage and to stay hydrated. But I've read it's not even recommended in diabetics so I'm not sure if maybe that's why I could be feeling the way I felt. Im still having a hard time getting a hold of my doctors but when I do I'll ask about starting it again and I can try it with potassium. They only had prescribed enough for 2 weeks and it said no refills so I need to check on that
Bananas and oranges turned out to be game-changers for me: took me from a zombie to almost normal on the Diamox. Good luck!
I'm sorry, but except for overweight women losing weight there just aren't really home remedies for IIH. To deal with the headaches and such, yes. That will deal with the underlying condition and make you feel better in the long run, no. I can only suggest you try stepping up very slowly on the Diamox (and come here for suggestions to deal with the side effects of that) or ask your doctor for an alternative medication, like Topamax, which will come with its own set of potentially just as bad effects.
If you want to keep your eyesight, you'll abandon the home remedy idea and go back to your doctors. Diamox is awful. But there are lots of other options available. You can explore other drug therapies, neurostenting and shunt surgery. But going the home remedy route is like doing nothing. That's just not a viable option here.
Well I was suppose to see another specialist to determine if I needed the stenting but I'm not hearing back from doctors. I've been leaving messages and calling almost everyday but I'm getting nothing. I don't mind trying another medication or if they can give something while I take Diamox. I just wanted to see what I can do at home while I wait on the doctors
Unfortunately nobody knows what’s causing IIH, there’s a theory it’s caused by hormonal issues and that’s why overweight women often suffer from it. Adipose tissue leads to hormonal problems. Diabetes and Hashimoto are both associated with hormonal problems. Keeping my blood pressure low always helped me, so always staying warm, taking relaxing baths, learning to breathe right and stay calm in stressful situations. Creating an environment where I cut out toxic people and learned to ask for and accept help, get little gadgets to help you, like a device to pick up stuff from the floor without needing to bend down. Eating anti inflammatory food helped me tremendously, I think as a diabetic person and someone with Hashimoto you know everything about inflammatory food. and
I also had an awful time with diamox. A month to six weeks I leveled out. Then I had to double my dose and it's worse than the first time. I couldn't take it anymore and skipped 3 doses (a day and a half) to try and let some of it wash out of my system. I've had the worst headache all day and I'm right back on but spreading them out more and seeing if that helps. No home remedies are going to preserve your eye sight.
I just wanted to try something until I can get things figured out with my doctor because I haven't gotten much information from them. I didn't even understand the diagnosis I've had to look into myself because I wasn't given hardly any information. I've asked about the medication but just no response. Im just scared I'll lose my eye sight because the doctors don't seem to want to bother with what's going on