Re: Beta blockers for POTS anyone?

[Guest guest]

Have you tried using tiny amounts of Florinef? I can't tolerate normal doses,

but find that as little as 1/8 tablet can be helpful.

Ellen

Wondered if anyone uses or has tried low dose beta blockers for POTS/OI.

I have adrenal insufficiency as some may know, low aldosterone which makes

POTS a lot worse. Cant tolerate florinef which is used for POTS/OI - aldosterone

replacement.

Main probelm is that if I have to be up for too long (which can be just a few

minutes), I can get bad POTS symptoms. So for the last few years I have missed

most of my medical appointments which is very counter productive.

I wondered if occasional low dose beta blocker just for use on say days I need

to get to appointments etc would be useful? I've heard of others with CFS using

them too and being able to get out more.

Any advice on types/doses or experiences would be appreciated! Not sure if I'd

even tolerate though as I'm super drug sensitive and don't tolerate many/most

meds.

Thanks, Chris.

----------------------

33, Male, 5'9, 65kg (143lb)

Secondary AI, CFS/MCS/FM,

40mg HC, 50mg Testogel

Licorice root, Mag, Lypo C, D3 & other supps.

Melbourne, Australia.

http://cfsjourney.org

----------------------

[Guest guest]

Hi Ellen. I tried down to 1/8th and it still gives an 8hr migraine

unfortunately. I so wanted to tolerate any amount. I feel it does slow the HR

down even through the migraine. Very frustrating indeed.

~Chris.

----------------------

33, Male, 5'9, 65kg (143lb)

Secondary AI, CFS/MCS/FM,

40mg HC, 50mg Testogel

Licorice root, Mag, Lypo C, D3 & other supps.

Melbourne, Australia.

http://cfsjourney.org

----------------------

>

> Have you tried using tiny amounts of Florinef? I can't tolerate normal doses,

but find that as little as 1/8 tablet can be helpful.

>

> Ellen

>

> Wondered if anyone uses or has tried low dose beta blockers for POTS/OI.

>

> I have adrenal insufficiency as some may know, low aldosterone which makes

POTS a lot worse. Cant tolerate florinef which is used for POTS/OI - aldosterone

replacement.

>

> Main probelm is that if I have to be up for too long (which can be just a

few minutes), I can get bad POTS symptoms. So for the last few years I have

missed most of my medical appointments which is very counter productive.

>

> I wondered if occasional low dose beta blocker just for use on say days I

need to get to appointments etc would be useful? I've heard of others with CFS

using them too and being able to get out more.

>

> Any advice on types/doses or experiences would be appreciated! Not sure if

I'd even tolerate though as I'm super drug sensitive and don't tolerate

many/most meds.

>

> Thanks, Chris.

> ----------------------

> 33, Male, 5'9, 65kg (143lb)

> Secondary AI, CFS/MCS/FM,

> 40mg HC, 50mg Testogel

> Licorice root, Mag, Lypo C, D3 & other supps.

>

> Melbourne, Australia.

>

> http://cfsjourney.org

> ----------------------

>

>

>

>

>

>

[Guest guest]

Hi I live in Melbourne too. Are you seeing anyone for treatment?

Regards, Lee

_____

From:

[mailto: ] On Behalf Of csharpham

Sent: Tuesday, 13 September 2011 9:23 AM

Subject: Re: Beta blockers for POTS anyone?

Hi Ellen. I tried down to 1/8th and it still gives an 8hr migraine

unfortunately. I so wanted to tolerate any amount. I feel it does slow the

HR down even through the migraine. Very frustrating indeed.

~Chris.

----------------------

33, Male, 5'9, 65kg (143lb)

Secondary AI, CFS/MCS/FM,

40mg HC, 50mg Testogel

Licorice root, Mag, Lypo C, D3 & other supps.

Melbourne, Australia.

http://cfsjourney.org

----------------------

>

> Have you tried using tiny amounts of Florinef? I can't tolerate normal

doses, but find that as little as 1/8 tablet can be helpful.

>

> Ellen

>

> Wondered if anyone uses or has tried low dose beta blockers for POTS/OI.

>

> I have adrenal insufficiency as some may know, low aldosterone which makes

POTS a lot worse. Cant tolerate florinef which is used for POTS/OI -

aldosterone replacement.

>

> Main probelm is that if I have to be up for too long (which can be just a

few minutes), I can get bad POTS symptoms. So for the last few years I have

missed most of my medical appointments which is very counter productive.

>

> I wondered if occasional low dose beta blocker just for use on say days I

need to get to appointments etc would be useful? I've heard of others with

CFS using them too and being able to get out more.

>

> Any advice on types/doses or experiences would be appreciated! Not sure if

I'd even tolerate though as I'm super drug sensitive and don't tolerate

many/most meds.

>

> Thanks, Chris.

> ----------------------

> 33, Male, 5'9, 65kg (143lb)

> Secondary AI, CFS/MCS/FM,

> 40mg HC, 50mg Testogel

> Licorice root, Mag, Lypo C, D3 & other supps.

>

> Melbourne, Australia.

>

> http://cfsjourney.org

> ----------------------

>

>

>

>

>

>

[Guest guest]

Are you taking pantothenic acid?

Ellen

Hi Ellen. I tried down to 1/8th and it still gives an 8hr migraine

unfortunately. I so wanted to tolerate any amount. I feel it does slow the HR

down even through the migraine. Very frustrating indeed.

~Chris.

----------------------

33, Male, 5'9, 65kg (143lb)

Secondary AI, CFS/MCS/FM,

40mg HC, 50mg Testogel

Licorice root, Mag, Lypo C, D3 & other supps.

Melbourne, Australia.

http://cfsjourney.org

----------------------

>

> Have you tried using tiny amounts of Florinef? I can't tolerate normal

doses, but find that as little as 1/8 tablet can be helpful.

>

> Ellen

>

> Wondered if anyone uses or has tried low dose beta blockers for POTS/OI.

>

> I have adrenal insufficiency as some may know, low aldosterone which makes

POTS a lot worse. Cant tolerate florinef which is used for POTS/OI - aldosterone

replacement.

>

> Main probelm is that if I have to be up for too long (which can be just a

few minutes), I can get bad POTS symptoms. So for the last few years I have

missed most of my medical appointments which is very counter productive.

>

> I wondered if occasional low dose beta blocker just for use on say days I

need to get to appointments etc would be useful? I've heard of others with CFS

using them too and being able to get out more.

>

> Any advice on types/doses or experiences would be appreciated! Not sure if

I'd even tolerate though as I'm super drug sensitive and don't tolerate

many/most meds.

>

> Thanks, Chris.

> ----------------------

> 33, Male, 5'9, 65kg (143lb)

> Secondary AI, CFS/MCS/FM,

> 40mg HC, 50mg Testogel

> Licorice root, Mag, Lypo C, D3 & other supps.

>

> Melbourne, Australia.

>

> http://cfsjourney.org

> ----------------------

>

>

>

>

>

>

[Guest guest]

If you can't tolerate florinef you could try salted water (celtic sea salt in

water up to 3 tsp/day). Or licorice, but have to keep a check on BP with that.

I do salted water every day and it is helpful for me. Salt is a dirty word, but

not for those of us with adrenal problems. It can be a lifesaver. Deb

>

> Wondered if anyone uses or has tried low dose beta blockers for POTS/OI.

>

> I have adrenal insufficiency as some may know, low aldosterone which makes

POTS a lot worse. Cant tolerate florinef which is used for POTS/OI - aldosterone

replacement.

>

> Main probelm is that if I have to be up for too long (which can be just a few

minutes), I can get bad POTS symptoms. So for the last few years I have missed

most of my medical appointments which is very counter productive.

>

> I wondered if occasional low dose beta blocker just for use on say days I need

to get to appointments etc would be useful? I've heard of others with CFS using

them too and being able to get out more.

>

> Any advice on types/doses or experiences would be appreciated! Not sure if I'd

even tolerate though as I'm super drug sensitive and don't tolerate many/most

meds.

>

> Thanks, Chris.

> ----------------------

> 33, Male, 5'9, 65kg (143lb)

> Secondary AI, CFS/MCS/FM,

> 40mg HC, 50mg Testogel

> Licorice root, Mag, Lypo C, D3 & other supps.

>

> Melbourne, Australia.

>

> http://cfsjourney.org

> ----------------------

>