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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.
Oh wow you have really been through the ringer. I am so, so sorry about your suffering. My heart goes out to you!
When you said vertigo, I kind of though ME/CSF. There’s an author named Laura Hillenbrand who wrote an exquisite essay about her journey into CSF hell that discussed vertigo as a primary symptom. Anyway, the reason I mention this is because an emerging treatment for that illness is Low Dose Naltrexone. It prompts your body to produce natural endorphins, which modulate the immune system. I am on this to control the pain and inflammation that comes with EDS. I can’t describe the degree to which that drug has helped me. My inflammation is gone and my pain is gone. This is after a lifetime of terrible pain like you described: neck pain, headaches, and also burning inflammation throughout my joints and muscles.
Hi, I am actually much less dehydrated on Diamox. This is because of how it counters the dysautonomia (sp?) caused by the excess fluid.
For potassium, I take K-Bicarb by Biotech (99mg, 3 capsules a day). It is the bicarbonate form.
I test my pH with pH strips I got off of Amazon. I just pee on the sticks. If I’m acidic, I drink a cocktail of baking soda and Alkazone Alkaline Booster drops. They are full of electrolytes. My doctor recommended Himalayan sea salt. She said it’s much better than regular sea salt. I have some that I soak in water, and I drink a little of the water sometimes when I remember.
I don’t drink more water. Before Diamox, I was going through a whole tub of Gatorade powder every five days, and I was also slamming water like crazy. In addition to gulping down big cups of water all day. Nothing helped! I just peed it right out. That doesn’t happen anymore.
I weirdly self-medicated with alcohol for years. It helped somehow. I don’t drink much anymore. I do drink coffee, which seems to help as well. I can’t even explain what I mean by that, except that my body’s intuition told me it was good for the dehydration.
When you say you haven’t noticed much difference after a month on Diamox, what do you mean? What symptoms do you have that aren’t getting better, specifically?
For me, they were: dehydration, unable to retain water, syncope and near-syncope, weakness, extraordinary cold intolerance (as though cold burned my skin), and physical fatigue. Also problems with memory. I notice these symptoms abating almost immediately with Diamox.
What dose are you on?
Hi, I am new too! I am so glad you found the site. I started taking Diamox a year ago after a lifetime of POTS & neck pain & it just changed my life. I take Low-dose Naltrexone for pain & Xyrem for Narcolepsy, which I suspect many people with EDS have.
What are you doing for treatment?