Just started Diamox. Not a fan. Have Questions!

Posted , 5 users are following.

Hi all.

I've been having solid headaches straight for 3 years. There is an insane amount of pressure-like feeling involved and for awhile, it was up in the air as to whether they were low or high-pressure headaches.

I recently had a lumbar puncture and CT done at Duke, where my pressure came out borderline high. (22) I was started on a lower dose of Diamox ...and my head feels worse! The feeling of pressure is more extreme and there is a noticeably worse/severe pressure-pain in between my eyes and across my eye/forehead region. I also feel pain/tugging feeling across my neck and lower part of my head.

I'm confused as to why this is. I don't feel any relief, and now I'm wondering if the diagnosis is correct. What the heck is going on?

Any help would be appreciated!

0 likes, 2 replies

2 Replies

  • Posted

    Hi, I see that it has been 2 months since you wrote.

    First, it is not because you are on the high border line that you will not suffer from IIH. my pressure was 24 (which is also borderline) and I had all the symptoms requiered for me to get an IIH diagnosis (papilledema, empty sella, headaches, pain behind the neck, etc).

    Diamox is not supposed to relieve your headaches, it actually makes them worse sometimes. Diamox is only given to protect your vision. With time, diamox will in fact reduce your pressure hence it will decrease the intensity of your headaches... but that takes sometime and you will still have headaches coming from the diamox itself.

    You should see a neuro-opthalmologist to see how your optic nerve is doing (if you have papilledema); The results you will get in your first appointement at the neuro-opthalmologist will also be uselful to compare them with your future appointments.

    The CT and the Lumbar puncture are usually enough for a neuro to make the right diagnosis, but you should alse get an MRV to see if you have anatomical problems that could explain your IIH.

    Please, try not read forums where people leave their comments on how they are handling the IIH; people who write on these forums are usually going to talk about how hopeless they are... people that are doing well and have hope will not write on forums since they don't need to. So you will only hear about bad experiences on these forums.

    Be positive, take one day at the time, drink enough water to make sure the diamox will not cause you other problems like kidney stones and once again, do not go on forums.

    Oh, and eat bananas, they will keep your potassium on a good level.

    (I am not a doctor)

  • Posted

    can you give us an update? any change? Did the Diamox start to work for you?

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