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Hi Pi, I'm glad you've had some success in treating your migraine :) What you describe is reported quite commonly by migraineurs, including the uncomplicated patients that don't have ME/CFS. There may be some crossover but its probably not PEM as we understand it in ME/CFS. There's increasing...

I had my second round of botox for chronic migraine last month (given at 3 month intervals). I had to fail 3x oral preventatives and have >15 migraine days a month to qualify for it on NHS. It's not prescribed for episodic migraine and I'm unsure how effective it would be for that. I suffered...

Ivabradine is the biggest help for this that I have tried, prescribed off-label for POTS. It helps me with the immediate impact symptoms you mention, but also the "tired but wired" sensations post-exertion in the evenings. I realised that if I took a further dose in the afternoon it would also...

I've posted about my experience with Pyridostigmine Bromide a few times in the past, i've been taking it for around 5-6 years now I think - prescribed by neurocardiology in an autonomic clinic. Where my experience may differ to some is that I take ~2x the max dose usually recommended for POTS...

Curious to know if you get anywhere with this, especially as from memory we have an awful lot of symptom overlap. Have you had the genetic testing to confirm this mutation already? After diagnosing SFN my neurologist suggested sending me to a sodium channel mutation expert. In his words I was...

That's a shame - I had a wonderful initial appointment with Prof Lobo (1hr+ on the phone) and since then have just had check-ups with his registrars, who don't seem knowledgeable/interested in POTS. They've just pushed for exercise unlike Lobo/Gall. They plan to discharge me after the next...

I was in two minds about bringing that up because I didn't want to give the impression he's a quack, but its a very fair point. If it helps others, Dr L investigated my "classic" endocrine issues more thoroughly than previous docs had - i'd have confidence that he is a very competent...

I had an excellent experience with Dr Lulsegged - he got my reactive hypoglycemia under control, which had insidiously become my most disabling symptom by far. Very friendly and empathetic, but more importantly he tried to break all my issues down, identify and treat or refer onwards. Aside...

I was taking triptan nasal sprays in the mid-90s :bored: Very helpful indeed if you're unlucky enough to have shutdown of normal digestion at migraine onset.

I've always assumed the ME/CFS label is just superseded by another diagnosis that is more specific/less controversial in situations when these patients do actually receive appropriate care. The tertiary clinics i've attended, which includes a Gastro clinic where most of the people in the...

Dr Diana Driscoll (Optometrist...) reported using nicotine patches and promoted a theory/treatment around their effect on the vagus nerve in POTS. She pushes supplements that support "all functions of acetycholine". Whatever that means o_O

I was aware of the significant & non-immediate consequences of "overdoing it" for some time. Issues like later becoming too wired to fall asleep or stay asleep, digestive problems, orthostatic hypotension, breathing/heart rate/vision etc. etc. but how much of this was triggered by just being...

I'm sorry that you're having to deal with it, it can be very distressing & disabling. I think its risky to assume the driver for your symptoms is the same as mine, there are at least a few quite different reasons these issues happen. In my case interventions for POTS are essential to control my...

Recommend asking for a 24hr ambulatory blood pressure monitor. You wear the cuff all day with a data recording device, it then goes off automatically throughout the day. You'll have the worst night's sleep of your life, but the results can be interesting! It confirmed the hyperadrenergic...

One option you could consider is booking a regular 1-day VO2max test, but exercise to exhaustion at home the day before, emulating a 2-day test. If you do have the sort of response seen in some ME/CFS patients, you may show some sort of abnormality in the test that will be reported, even when...

Perhaps its correcting the CBF reduction and that is important.

Fantastic news, I hope it continues for you. What dose are you taking? I have settled on 120mg morning, 120mg lunchtime, 60mg dinner time. I have been told I can increase to 180mg TID and will try to push it at some point to see if it aids physical activity further, currently I'm quite stable...

Doctoral study was a good fit for me whilst mild but I think its going to be highly variable, dependent on institution and subject domain. I was fortunate that my engineering group was not at a very competitive university, it was also largely commercial and always needed "students" to do the...

Have battled SIBO for about 10 years. The breath testing has its pitfalls, from memory a glucose (vs lactulose) test with a clear twin-peak response is the closest you'll get to a reliable diagnosis, barring an endoscopy & sample. My SIBO symptoms ended up really quite severe, what originally...

Fedorowski (one of the authors) flogged this for a while, when it became clearer that it wasn't a useful test someone (CellTrend?) put forward a grouping of CellTrend AAB results that still promised to be diagnostic and I recall him discussing plans to test that. This paper refers to analysis...