May 18, 2017 at 10:46 am #1117bombsh3llParticipant
Hi, I am eagerly awaiting my second supply of diamox to arrive to give it another trial. Briefly I abandoned it last time due to side effects and no benefit but think I may have given up too soon.
I wanted to know from anyone with severe POTS/orthostatic intolerance/hypovolaemia, roughly how much did you increase your fluid intake on Diamox to counter the diuretic effects?
Do you still salt load or does the sodium bicarbonate take care of our additional sodium needs in terms of maintaining blood volume?
Also does anyone take potassium alongside it in bicarbonate or citrate form? Currently I take 1 teaspoon of sea salt a day, around 3 litres of water and half a teaspoon of lo-salt which is potassium chloride. I take the potassium in the hope of stimulating aldosterone production (as I produce almost none), and also because I take licorice root which is a natural florinef alternative and can deplete potassium, which I plan to continue taking along with Diamox. (Licorice doesn’t give me the crushing headaches that florinef did).
Any advice much appreciated thanks,
B xxxJune 16, 2017 at 3:49 pm #6182gentle_hugsParticipant
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?July 22, 2018 at 9:37 am #6293bombsh3llParticipant
Wow thanks, sorry it is so late I didn’t know anyone had replied to this.
The symptoms you had are more or less identical to mine! The symptom I want to get rid of most is the constant near syncope and inability to stand without passing out. I just want some blood flow and oxygen to my brain!
I have only ever taken a few sporadic doses of Diamox because I got side effects of numbness and tingling in my face and hands, and was scared about the diuretic effect.
I have just now come around to trying it again (250mg) because I have been on a low dose of Florinef with worse head pressure, and a recent upright MRI showed mild hindbrain herniation (cerebellar tonsils in foramen magnum) probably not enough to qualify as Chiari.
I haven’t had any benefit from the Florinef so am going to taper off and stop it, in case it is raising my ICP and causing the tonsillar descent, but stay on the Licorice root which did really help me initially.
Can I ask what dose of Diamox you or anyone else take, just as a point of reference?
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