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Hi Tareq, Diamox does wonders for the sort of listless fatigue I have always had. Not so much for the physical kind, where I get winded going up stairs, or for the sleepy kind associated with my narcolepsy. (Which I treat with low-dose naltrexone and Xyrem, respectively).
By listlessness, I mean that I just don’t have the urge to do anything. I feel confused, bored, maybe a little depressed. Almost always accompanied by extreme cold sensitivity–like the cold is burning my skin.
That’s very interesting, I’m glad it helps you with that kind of fatigue. I’m hoping it’ll help me with nervous system/physical related fatigue
Hi Tareq, I would absolutely encourage your doctors to help you with a trial of Diamox and a brain MRI. To date, every person we’ve seen with even a small Chiari at POTS Care, has experienced some dramatic improvements with Diamox (even elimination of the Chiari in a couple of cases). Quite a few patients were able to avoid neck fusions, too. The next step is to focus on what has made the intracranial pressure increase. If you are like many of us, there are often underlying causes of the increase in pressure that tie in with chronic fatigue. It can be tough to figure out, but absolutely worth it! Meanwhile, Diamox can significantly improve your quality of life, if you are affected by high pressure. Hang in, my friend.
Thank you so much for the reply, I’m going to try get an MRI scan as soon as possible. I may have a private doctor who may be willing to prescribe the diamox hopefully!(I live in the Uk and doctors here are quite behind with connection between EDS, CFS etc) Could I ask is it still safe to take diamox even if the MRI doesn’t show chiari malformation? And at what dose do you normally recommend to your patients to start with? Thanks again,
TareqDr. Diana Driscoll,
I suffer from extreme chronic fatigue, have EDS- hypermobile type and CFS, have tried literally everything and nothing is helping. I was wondering is diamox useful for treating chronic fatigue if the cause of the fatigue is the lack of drainage from the brain? I constantly feel my sinuses and brain is full of fluid and the worse it is the worse my fatigue is, but I have no pain whatsoever. Do you think a trial of diamox for me may be beneficial? I have never had an MRI done, but my family member has chiari malformation and had surgery for it. Thanks,
TareqThat’s amazing 🙂 I’m so glad it worked well for you. It must be such a relief after suffering like that for so long! Unfortunately I haven’t had results from parasym plus, but I will continue to take it for at least a month in case anyway. I’m just on a low dose of nimodipine too and an antiviral called valacyclovir. I am thinking of going down the mast cell disease treatment route with the antihistamines etc 🙂 You’re doing such great work in this field
DR. Diana Drisco,
I was wondering how long it took for patients in the research study of Parasym plus to get improvements and the significant improvements on average? Many thanks,
Tareq
