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What meds have helped you with NMH?

Messages
92
Hi, everyone, I've had bad NMH for 1.5 years, which has greatly compounded my M.E.--gone from having M.E. symptoms but able to work to pretty much housebound.

I was put on Florinef over a year ago, which didn't help much, then Midodrine last summer, which helped somewhat--I can stay upright longer now. Still really fatigued/lightheaded/needing to be horizontal a lot though.

The Florinef did normalize my BP, so my not-so-helpful cardio wasn't all that interested in my symptoms. (had to really push to get Midodrine from him). Seeing him again tomorrow and wondering what else has helped for you--I don't have POTS (my heart rate is pretty consistent lying down/sitting/standing so I shouldn't have beta blockers, et.

Thanks!
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
Hi, everyone, I've had bad NMH for 1.5 years, which has greatly compounded my M.E.--gone from having M.E. symptoms but able to work to pretty much housebound.

I was put on Florinef over a year ago, which didn't help much, then Midodrine last summer, which helped somewhat--I can stay upright longer now. Still really fatigued/lightheaded/needing to be horizontal a lot though.

The Florinef did normalize my BP, so my not-so-helpful cardio wasn't all that interested in my symptoms. (had to really push to get Midodrine from him). Seeing him again tomorrow and wondering what else has helped for you--I don't have POTS (my heart rate is pretty consistent lying down/sitting/standing so I shouldn't have beta blockers, etc.
I'm also on both midodrine and fludrocortisone (Florinef).

I'm not housebound, so I think I'm doing a bit better than you are. But I'm not able to work (on disability since 2000), and I need to rest a lot of the time, so it's no panacea.

Are you drinking lots of liquids with electrolytes? The only other thing I can suggest is to try a time-release prescription potassium pill like K-Dur.

I've also read that even ibuprofen has a mild positive effect. I'm not sure why (perhaps inflammation?)

If it's true then it explains why my NMH got worse after my endometriosis surgery. It wasn't just being slow to recover from surgery. It was that I had stopped taking painkillers (Rx of Toradol for the 6-7 days of my period, then over the counter ibuprofen, at twice the dosage usually recommended, for the rest of the month). So I might try taking some once in a while to see if it helps (as long as my stomach can take it).

There are many other treatments listed on the following sites (some sites mention POTS but there is an overlap in what helps POTS and NMH/NCS):

DINET - http://dinet.org/index.php/information-resources/pots-place/pots-what-helps

Medhelp - http://www.medhelp.org/tags/health_...nic-Syncope/Dysautonomia-Treatments?hp_id=171

POTSgrrl - http://potsgrrl.blogspot.com/p/pots-medications-and-treatments.html
(Horrible color scheme but the information looks like it's useful, I only skimmed it)

I hope someone else will post more suggestions from personal experience.
 
Messages
92
Thanks, @ahimsa and @Sushi! Will take those ideas to my cardio. Also starting over with a new TTT and cardio (who has a better rep among others here with dys) in a few weeks. Unfortunately I think that means going off my meds (at least the Florinef and salt water) for a few weeks beforehand.
 
Messages
92
@ahimsa Do you think I'd need time-release potassium if my potassium levels have been testing normal? I've been tossing a bit of potassium salt in my salt water every now and then, and drinking good quantity of salt water daily.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
@ahimsa Do you think I'd need time-release potassium if my potassium levels have been testing normal? I've been tossing a bit of potassium salt in my salt water every now and then, and drinking good quantity of salt water daily.

I don't know. My levels were always in the normal range. I still felt better after I started taking it (an Rx time released version) regularly.

Placebo? Coincidence? Some other reason?

Some days I just throw up my hands and give up on ever connecting cause and effect.

There are so many variables ...
 
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15,786
Strattera helped me too, also a low dose. I switched to a low dose of yohimbe, since it's much cheaper and available OTC in the US, and I get the same benefits.