Is IIH a long term disease?
My LP opening pressure was 17 cm of H20. I was suggested to take diamox 250mg twice a day. What food should I avoid eating. Can you please guide me?
And about the healthy life style: Talk with your doctor first what kind of changes you can do. Eating healthy and taking walks is probably a good thing to start with. Weight lifting and harder training can momentarily increase the pressure quite a lot and maybe you should avoid that. Talk with your doctor! Also I don't know what symptoms you have and how much they let you do..
There is no known cure. Mainly because the cause is unknown. Hopefully it will go away on its own after some time. Meanwhile the treatment primarily focuses on saving the optical nerve.
There are three things that is usually done to help with this (except healthy living). Diamox or other medication that lowers the pressure. Spinal taps can be performed, not only as a diagnostic tool where they measure your opening pressure in the cerebrospinal fluid around your spine, but also to tap you of cerebrospinal fluid, which reduces the pressure. Such tapping must usually be performed with intervals of weeks to months. There is also surgical solutions where they can put in a shunt in your skull. Personally I would probably not suggest surgery. I think that medications is the best thing to start with if it helps enough and if it is not enough probably do some spinal tapping. I am sad to hear that the medication gives you side effects. On the other hand you have a dangerous condition that has left you with very few choices. There are other medications that could be tried instead that work similar to diamox. But for now I think the most important thing for you and your doctor is to make sure that the pressure goes down quickly. After that you can maybe start to make more long term treatment planning. Hopefully you will not have to take the medication forever. But I would guess at least for a year. Try to take up a healthy lifestyle, maybe it helps maybe not. But being fit is always better than not, no matter what illness your body has to face. I would also recommend you to get a second opinion on the MRIs to make sure that there really is no cause for this showing on the pictures. Even a skilled radiologist can miss something.
And finally, I am happy to help you with information and support but you must also speak with your doctor. Because in the end it is you and your doctors that need to fight this and I am just a random guy on the internet. But I hope things work out for you. And I think you are on the right way. I have big hopes that you will get through this! Keep us updated!
Thanks a lot for the information.
Neurologist asked me to under go Lumbar Puncture. The reason for IIH is still unknown. My BMI is Normal, still I would take up your advice to reduce my weight.
Diamox makes me dizzy and vomiting sensation but it has actually helped me to reduce the pressure. After taking Diamox its tough to concentrate that's affecting my work life, but if i dont take it now there wont be any future.
In my case IIH is identified in the initial stage, optic nerve us slightly swollen how long do you think I have to take the medication ?
Good that everything was normal. That is really good news.
IIH means that you have high pressure in the brain without any obvious cause. Normally a cause can be found like a chiari malformation, a dural sinus stenosis or a tumor for example. But it is known since many years that high pressure is possible without any obvious structural cause. (IIH).
You can not find a cause for the IIH on the scans, if you could it would not be IIH. But usually signs of high pressure can be spottet. For example the swelling of the optical nerve. Flattening of the eye bottoms, decreased turkish cella are others. They are not always found. Since you have been taking diamox which reduces pressure, it is also less likely that these signs are visible.
To confirm the diagnosis a lumbar puncture is usually ordered. This is maybe not necessary and can have side effects. Talk with your doctor.
It also depends on what other possible causes for the swelling they feel are reasonable. Maybe IIH is the most likely? And of coarse it also depends on your symptoms.
Keep us updated!
Hi, I had visited the Neurologist few days back. He asked me take couple tests like Vision Fields and B scan. Vision Fields were normal and B scan showed the swelling in optic nerve. He suspected it was a Tumor, but the doctor himself was not so sure so he asked me to consult a neurosurgeon and take MRI & MRV test. I consulted a Neurosurgeon before going to MRI & MRV scan, He suspected it as IIH (Idiopathic intracranial hypertension) but he still wanted me to take MRI & MRV also he asked me to take Diamox 250mg thrice a day which makes me dizzy. I have an appointed with neurosurgeon tomorrow got my MRI & MRV results. All the findings says its normal, now Which info confirms IIH in my MRI & MRV scan?
Hi and welcome to the Migraines & Headaches Community.
I have no idea. Please let us know what the specialist says.
IIH is not as dangerous as the other causes of high pressure, a tumor for example. The biggest danger is that your optical nerve will get damaged and you will lose vision. That's the main reason why it is important to get this under control.
Not much is known about the connection to other diseases but the high pressure does effect your brain and it can give you all kinds of nasty symptoms and even effect your hormonal system. The drug diamox also is a serious drug with possible side effects. So you are not in a good place right now. But it could have been much worse. I don't see that your life is in danger in any way and hopefully they can save your vision. Diamox can sure help. Weightloss and a healthy lifestyle can potentially help.
Keep the hope up and keep us updated!