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Hi folks,

 

I am noticing a number of members developped POTS during or after their withdrawal.

 

I thought it would be nice to have an area where these people can share information and support.

 

POTS - "Postural Orthostatic Tachycardia Syndrome" is a form of Dysautonomia (Disorder of the autonomic nervous system).

 

I have gone months and possibly years without knowing I had symptoms of POTS. This would at least explain some (not all) of my symptoms.

 

Anyone else have symptoms of POTS ?

At what point did symptoms start / go away?

Anything help with your symtoms?

Do symptoms come and go?

Etc.

 

 

All the best,

 

 

 

Fonz

 

 

 

 

 

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I was diagnosed with POTS last January.  It's gotten better over the years.  It's from brain damage.  Calming down helps me.  I used to collapse on the rug in the kitchen.  Just out the blue fall down.
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That's so crazy!  I am glad it's calmed down for you.

 

Thank you for sharing.

 

I am hoping future members can come across this so they know they are not alone.

 

 

Fonz

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Dr Jennifer Leigh of "Benzodiazepine help" had POTS. It started for her at a 6 year setback she had.

 

It was rough for her for several months,  a year?? . and it went away.

Now she's healed, travels , gardens, lives her life. This is all open to the public on her website blog.

 

I always get a little concerned I may get POTS from having stretches of downtime when my symptoms flare/ wave. I try to stay moving as much as I can. Can't say that POTS is only caused by lack of activity, but it's just a weird fear I get every now & then.

 

I've never had POTS but being on a forum like this & seeing that folks in withdrawal certainly can sometimes get POTS brings about awareness.

 

Jennifer Leigh did have a bad ordeal with it. Everytime she stood up her heart rate would get super high, she would be super weak & feel like she was being pushed down & sometimes feel faint....It did go away for her as she healed.

 

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I was diagnosed with Paroxsymal Tachycardia a few years ago.  The doc told me to stand up and when I did he checked my heart and then diagnosed me with that.  I know it's all from drug damage.  I envy people who heal from drug damage, because I know that I never will.  It's been 10 years since I have had this problem and it's getting worse all the time.  I've been housebound now for over 9 years and can't go anywhere or do anything ever.  I'm trapped in hell and I'll never get out.
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fonz, how long have you had POTS and what are your symptoms now?

 

I honestly have no idea how long I have had it.

 

I'm thinking it trully became apparent roughly 11 months ago. The real bad symptoms started 6 months ago and have fluctuated in intensity. The worst it has been is the last month, which I blame on heat, added stress and over exersion.

 

Symptoms now are dizzyness and weakness after standing, along with increased heart rate and blood pressure that drops.

 

 

Fonz

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Dr Jennifer Leigh of "Benzodiazepine help" had POTS. It started for her at a 6 year setback she had.

 

It was rough for her for several months,  a year?? . and it went away.

Now she's healed, travels , gardens, lives her life. This is all open to the public on her website blog.

 

I always get a little concerned I may get POTS from having stretches of downtime when my symptoms flare/ wave. I try to stay moving as much as I can. Can't say that POTS is only caused by lack of activity, but it's just a weird fear I get every now & then.

 

I've never had POTS but being on a forum like this & seeing that folks in withdrawal certainly can sometimes get POTS brings about awareness.

 

Jennifer Leigh did have a bad ordeal with it. Everytime she stood up her heart rate would get super high, she would be super weak & feel like she was being pushed down & sometimes feel faint....It did go away for her as she healed.

 

This provides hope, thank you for sharing.

 

It does seem to be somewhat rare here, so hopefully you never have to deal with it.

 

The worst part is developing it and wondering if you're stuck with it.

 

 

Fonz

 

 

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[a9...]

I have POTS and probable MCAS.

 

Diagnosed with POTS last year, by one of the top specialists in Ontario.

Only 3 in the entire country.

Was doing great until my COVID booster, then MCAS hit me hard.

 

Still getting over two COVID infections in 6 weeks.

 

My POTS dr thinks it could be from COVID in March 2020, before the drugs.

 

I think it’s now a mixture of everything.

Benzos, COVID, vaccine.

 

Many recent studies are showing the vaccines have given people POTS.

 

Lots of compression, salt, water and electrolytes.

 

Good luck. I was doing amazing until the booster and COVID infections.

 

Find yourself some good drs.

 

Midodrine can help raise your BP, doesn’t work for me very well.

 

Winnie

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I have POTS and probable MCAS.

 

Diagnosed with POTS last year, by one of the top specialists in Ontario.

Only 3 in the entire country.

Was doing great until my COVID booster, then MCAS hit me hard.

 

Still getting over two COVID infections in 6 weeks.

 

My POTS dr thinks it could be from COVID in March 2020, before the drugs.

 

I think it’s now a mixture of everything.

Benzos, COVID, vaccine.

 

Many recent studies are showing the vaccines have given people POTS.

 

Lots of compression, salt, water and electrolytes.

 

Good luck. I was doing amazing until the booster and COVID infections.

 

Find yourself some good drs.

 

Midodrine can help raise your BP, doesn’t work for me very well.

 

Winnie

 

Thank you for the information.

 

I'm sorry you also have to deal with this condition.

 

I live a little isolated, so I have never had Covid nor did I get any vaccines.

 

I may have MCAS, as I have had some crazy immune symptoms since my POTS became apparent. I was breaking out in full body rashes with what seemed to be a sensitibity to heat and strong emotion. I also had a severe allergy to a bee sting and contrast dye. These were not anaphylaxis but fully body hives which was pretty frightening.

 

What types of symptoms do you get from MCAS?

 

 

Fonz

 

 

 

 

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Dr Jennifer Leigh of "Benzodiazepine help" had POTS. It started for her at a 6 year setback she had.

 

It was rough for her for several months,  a year?? . and it went away.

Now she's healed, travels , gardens, lives her life. This is all open to the public on her website blog.

 

I always get a little concerned I may get POTS from having stretches of downtime when my symptoms flare/ wave. I try to stay moving as much as I can. Can't say that POTS is only caused by lack of activity, but it's just a weird fear I get every now & then.

 

I've never had POTS but being on a forum like this & seeing that folks in withdrawal certainly can sometimes get POTS brings about awareness.

 

Jennifer Leigh did have a bad ordeal with it. Everytime she stood up her heart rate would get super high, she would be super weak & feel like she was being pushed down & sometimes feel faint....It did go away for her as she healed.

 

This provides hope, thank you for sharing.

 

It does seem to be somewhat rare here, so hopefully you never have to deal with it.

 

The worst part is developing it and wondering if you're stuck with it.

 

 

Fonz

 

                                  ***** CORRECTION *******

 

The name of Dr Jennifer Leigh's site is "Benzo Withdrawal Help"

 

Sorry for that error

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