Other drugs aside from midodrine, bbs and flourinef?

[persephone]

Surely this can't be right? I read about all sorts of other drugs you guys over the pond are taking- and I can't help but wonder if some of these are available in the UK.

Anyone who didn't get helped by midodrine, betablockers or fludrocortisone please leave a message detailing what you take and how it has or hasn't helped?

It would be a rela eyeopener for us UK people as we seem to be years behind you!

[ariella]

Persephone,

I LOVE mestinon. I'm sure it's also available in the UK, myasthenics take it. It worked better for me than the midodrine.

Ariella

[dizzygirl]

hey perse..

well i have been on oodles of meds.. and the meds you mentioned dont do swuat for me either..

so here is what I am on now for my pots..

mestinon--pots and stuff--i take 3 times a day at 60mg each time

Cymbalta--i take once a day at 30mg daily

I just started a new BB.. though I cant quite think on the name of it at the moment... will let you know if it helps the tachiness..

oh and I am suppose to be taking provigil to.. it is primarily used to treat narcoplepsy.. but is being used for me so that I can get some energy.. But I am a big chicken and afraid to start another new med!

I'm on a boat load of other meds--- look at my signature....but mestinon and cymbalta out of all the meds that I have been on in the past 4 yrs. these have helped the most...

I hope Persephone that you can find a med or meds that help you as well!! good luck girl!!

linda

[MightyMouse]

Initially, I took Celexa 30mg, an SSRI, that really helped me. Later the company came out with a newer version, which I still take: Lexapro 10mg.

I also take Cozaar to control my blood pressure, 10 mg.

When needed, I can take xanax, which I have at the lowest dose they offer, can't remember offhand.

you may also want to look at the main dinet site under "what helps" for medications that have shown promise with POTS and other ANS problems.

Nina

[dizzygirl]

perse...

here is the name of that new( for me to be taking anyways) beta blocker.. I couldnt think of earlier.. it is called KERLONE.. generic name being bexatolol...

I took my first dose today and it lowered my heart rate down to about 115-120(considering my rate is usually much much higher!) ~!!! WAHOO!!.. i cant even feel my heart beating even when i stand!! what a weird feeling....

I am remaining hopefully that this med will show long term good results.. first dose good!

but anywys wanted to let you know the name of it before I forget to post about it..it is suppose to be a nore potent form of propranolol (inderal).. and longer lassting too..

good luck persephone!! :)

[d4g7]

I've taken Tambacor and Propranalol to help control my heart rate, and they work, although I don't like taking such a high dose of propranalol (320mg per day).

SSRI's give me insomnia, so I don't take them, as I have to then take either Stillnox or Immovane to be able to sleep - and then I wake up with a hang-over type feeling everyday.

Mestinon didn't work to well for me personally - it gave me huge gastric problems, and I didn't get any noticable benefit from them.

Florinef helps, buts gives me a migraine type headache.

I also take a bit of Xanax to calm my anxiety.

I'm currently trying to adjust the quantities of Florinef/Mestinon and Sodium Chloride to try and keep my blood volume up, but not have the side effects - so far I haven't found the right combination.

My neurologist has suggested some type of adrenaline treatment next, since the others aren't working - I'm not sure what this is exactly, but will let you know. I am see her next week.