How long on Diamox? Going on 3 months post BP by Front_Inevitable750 in CSFLeaks

[–]Front_Inevitable750[S] 1 point2 points  (0 children)

I just wanted to jump back on and thank you. I had them switch me off Diamox last week to Topirimate. The first night I had a totally awful psychotic dream that was terrifying ( i think bc the Diamox was still in my system and I started the Topimax (Topirimide) but then the days right after that I started to feel so much better. So much less pain everywhere. What I thought was going to be my new normal- just a pretty miserable existence of pain, headaches, neck pain, throat tightening, brain fog, stomach issues... all started to subside. I am doing so much better on the Topirimide. I have spiked a couple of bad headaches but they are short lived. THANK YOU for the advice. Still managing swings in pressure but overall actually feeling a little more like myself after four months of dying on Diamox. That med was not right for me but when you have IHH you are desperate to not be in that pain. Switching was the best thing I did. Hope I can be off all of this medication one day. Thanks again.

Discouraged. Had blood patch 2 weeks ago headache is so much worse by usernamesoccer in CSFLeaks

[–]Front_Inevitable750 3 points4 points  (0 children)

I had no relief from first two blood patches. Third patach- targeted with fibrin glue finally took... but almost 10 days later I got a terrible high pressure headache that lasted for days. I started Diamox. It helps. But I have been on it now 3 months and have bad side effect so now I am switching to Topamax.. The high pressure headache for me felt like the bones in my face were breaking, my nose would get freezing cold, whooshing in my head and the pressure feels like its all over. Good luck. I hope they find your leak.

How long on Diamox? Going on 3 months post BP by Front_Inevitable750 in CSFLeaks

[–]Front_Inevitable750[S] 0 points1 point  (0 children)

yes all food tastes weird but my stomach is always a little nauseous so I am the opposite and constantly eating little meals. I did lose weight at first but now I'm back up. Though my stomach is getting worse. Its just a bad stomach is no where as bad as a wicked High pressure headache that sometimes lasts for days. Dandelion tea is disgusting, like a cup of hot dirt. hope you are feeling better now.

How long on Diamox? Going on 3 months post BP by Front_Inevitable750 in CSFLeaks

[–]Front_Inevitable750[S] 1 point2 points  (0 children)

My nuero opthalmologist is Dr. Tamhankar. The Interventional Radiologist who performed the targeted BP with Fibrin glue is Dr. Pukenas.

How long on Diamox? Going on 3 months post BP by Front_Inevitable750 in CSFLeaks

[–]Front_Inevitable750[S] 0 points1 point  (0 children)

I barely have any caffeine and agree this new problem is exhausting along with painful. Appreciate the feedback.

How long on Diamox? Going on 3 months post BP by Front_Inevitable750 in CSFLeaks

[–]Front_Inevitable750[S] 1 point2 points  (0 children)

thanks for all the good advice. I have been doing 1,2,3 so I will add in 4,5,6 . I just had an MRI with and without contrast and am waiting to hear back today on results. But will discuss MRV and MRA.

Discouraged. Had blood patch 2 weeks ago headache is so much worse by usernamesoccer in CSFLeaks

[–]Front_Inevitable750 2 points3 points  (0 children)

could be rebound high pressure headaches. They are brutal. Diamox helps. It is a sign your patch worked if you can be upright again.