Any Dr. Systrom patients here? - Mestinon (Pyridostigmine bromide) and safety...
Hello, So I got a prescription for Mestinon from my doctor to see if it helps with exertional intolerance (most notably pain/discomfort after exercise). I am freaking out about it though. For those...
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Strattera (atomoxetine)
I've started taking Strattera today, for OI problems. It's supposed to take 4+ days to start feeling effects, but I've already got a nice buzz going, and I'm feeling very alert, but in a pleasant way....
View ArticleHow long does Mestinon take to work?
I have been taking Mestinon during the last three weeks (120 mg/day) with no effect on my symptoms. In view of this, my doctor (who is not familiarized with MECFS or POTS) thinks that I should give up...
View ArticleARA-290
Anyone tried ARA-290 yet? I am going to start this with a few other patients in about two months, waiting on custom snythesis to finish. I think this would be the only possible Gamechanger for POTS/OI...
View ArticleDifference between nitroglycerine sublingual and tablets for anginal pain etc?
I have OI that has worsened. I have these new symptoms that starts with shortness of breath before I get this pressing heavy feeling in my left chest. Tried nitroglycerine sublingual spray a while back...
View ArticleAnyone had any benefit from taking NattoKinase ?
My doctor recommended Nattokinase (by NuMedica) , this is in connection with TOS. Apparently it helps blood flow. Anyone here got any benefit from this supplement? There are a few brands out there, my...
View ArticleSalt tabs: Favorite brands? Dosage?
It turns out that, after a lifetime of trying to minimize salt, it's really hard to take in enough sodium just through my diet! It's too bad that I find V8 rather nauseating. My doctor suggested salt...
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View ArticleM.E./POTS - Treatments, medications, protocols to increase fluid retention,...
Not another thread from me complaining about my ongoing thirst, frequent urination and dehydration....but at this point I am certain my general symptoms are caused by low blood volume or some for of...
View ArticleHas anyone had Midodrine make them sedated like a sleeping pill?
I couldn't find a thread on this particular aspect of Midodrine and really wanted to get some feedback. I was started on Midodrine by my new cardiologist in the hospital, first at 2.5 mg 2x/day and now...
View ArticleAnyone resolved blood pooling?
This is my biggest problem. If I can fix this, I think that I would be in much better shape. I have Pectus Excavatum which can mimic POTS and I think I will have to do the NUSS procedure in the hopes...
View ArticlePOTS - has anyone found "slow salt" supplements helpful (or tried saline drip...
I've been listening to a UK doctor on Youtube called Dr.Sanjay Gupta, and some of what he's saying is resonating with me. I'll be attempting to hydrate well, e.g. with sole water,... Dr.Gupta mentioned...
View ArticleAcetylcholine - How do POTS sufferers maintain good levels of it ?
As a POTS sufferer I am trying to maintain a good level of acetylcholine to help boost cognitive function. I've found Acetyl-l-Carnitine plus a source of choline to be really helpful. However, my body...
View ArticleAnyone found treatments that resolve/help orthostatic hypertension?
Hi everyone I know there have been various threads discussing the ins and outs of why BP goes up or down for ME/CFS patients. This thread is for anyone who has found a treatment, whether medication or...
View ArticleAnyone got tips on how to calm down heart palpitations quickly (POTS) ?
Past few nights I've had about 40mins of heart palpitations as I lie down to sleep. This is a recent occurrence - it happened a few years ago too - I think its because I've been physically inactive due...
View ArticleMidodrine hydrochloride in symptomatic orthostatic hypotension: a...
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4951503/ (open access) Clinical benefit of midodrine hydrochloride in symptomatic orthostatic hypotension: a phase 4, double-blind, placebo-controlled,...
View ArticleOrthostatic Intolerance (OI) Basics: Dysautonomia of Blood Vessels, Low Blood...
I just read a good overview article covering all the basics of orthostatic intolerance: Common Syndromes of Orthostatic Intolerance (Stewart, 2013)...
View ArticlePOTS: The Remarkable condition
Those with orthostatic intolerance- I.e. symptoms that get worse on standing such as nausea, dizziness, headache- please be aware that a negative tilt test does not exclude #PoTS. Dr Gupta of...
View ArticleClinical Trial: IV Albumin for Severe POTS
A Double Blind Randomized Controlled Crossover Study to Systematically Assess the Efficacy and Safety of Intravenous Albumin Infusions in Severe Postural Orthostatic Tachycardia Syndrome POTS is...
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Is an Inversion Table helpful for POTS people (blood flow to head) ?
I hear some different opinions on an inversion table for POTS sufferers. I'm thinking bloodflow to the head might always be helpful, but I've read one or two people not recommending an inversion table....
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