POTS and multiple/extended setbacks

[[Sh...]]

 

My wife has been going through withdrawal for about 14 months now and in a setback for about 7 months.  Her most debilitating symptoms are extreme POTS/movement intolerance.  She is completely confined to bed at this point and if she tries to walk, stand or even sit up she gets very tachycardic (even up to 120 bp sitting up) and also gets violent nausea that can last for hours.

 

Two questions for group:

1. she seems hypersensitized and susceptible to setbacks (POTS worsens and stays worse) and she has had multiple over the past few months, triggered by, among other things, emotional stress, hormonal/menstrual cycle, minute dose of a supplement she had been taking for year (1/60^th of her prior dose).  Has anyone else experiences this hypersensitization / multiple setbacks and how long did this continue?  Was there anything you could proactively do to break the cycle?
    
2. For any others with POTS as their primary symptom, how long did this last?  Did you find anything to help manage it?  The three common treatments are exercise, drinking more water and salt in the diet.  The first (exercise) is out of the question but she is doing the other two.  Her heartrate vascillates but at the beginning of her withdrawal she found that she could tolerate sitting, standing for short intervals and walking very short distances (across room and back) when her heartrate dropped into the 80s.  If she tried to move when it was in the 90s and higher, in addition to POTS then hitting her harder she would experience other symptoms like nausea, shaking legs, etc.  Our hope is to find some way to get her heartrate back into the 80s so she can try moving again without the other debilitating symptoms.  Thoughts?

 

Note: She reacts very badly to pharmaceuticals and afraid to take medications but considering

 

Thank you!

 

[[je...]]

Hi @[Sh...]

Welcome to BenzoBuddies!

Unfortunately I have to go and don't have time to reply to your questions. I just wanted to approve your membership so hopefully others will stop by and offer their support.

Welcome to our community!

[[Re...]]

@[Sh...], Wanted to chime in here. First of all, your wife is lucky to have a caring partner like you. I can answer question #1 and I am sure others will reply as well.

"she seems hypersensitized and susceptible to setbacks (POTS worsens and stays worse) and she has had multiple over the past few months, triggered by, among other things, emotional stress, hormonal/menstrual cycle, minute dose of a supplement she had been taking for year (1/60^th of her prior dose).  Has anyone else experiences this hypersensitization / multiple setbacks and how long did this continue?  Was there anything you could proactively do to break the cycle?"

This is not uncommon, there is no predictable timeline. There is nothing to do to break the cycle. Time is the best healer. It seems like asking someone to suffer inhumanely and it is to be honest. But we have to forge through. Social support is key. And helping the patient distract as much as possible. The brain can heal over time and the fewer complicating factors in the way of interventions the better in my experience and opinion. You might want to schedule a session with a coach like Angela Peacock or Melissa Boutilier -- they were both severe cases and are living their lives again. They also have more extensive information and knowledge about medications than other coaches in my experience. Angela teaches doctors about tapering so she really knows what she is doing.

[[...]]

Just rest assured she will get better. I was similar ,with breathlessness too. First 6 months exactly the same. Just lifting an arm would raise the heart rate .The second six months were better. At a year I got blood pressure spikes and went on a calcium channel blocker. Which does slow the heart rate too.The third six months I've seen a lot of improvements. At this rate I'm expecting to get back to work at 2 years. Then I'll see if I can remove the BP med. The high heart rate could just be part of the detox, I don't know.

I have tons of  supplements from over the years trying to figure out why I felt so sick before I realized it was the benzos. I gave up on supplements. You're so sensitive, they are just another variable. Just eat what you can and trust the body knows what to do. If you're really concerned, maybe just a multi vitamin.

Anyway it may seem like her symptoms are more than just benzos, but they read like mine any many others that have healed. Patience and distraction is all we have at this point. Keep at it and in time you'll see.

 

[[Mu...]]

[[Mu...]]

On 16/04/2024 at 14:57, [[R...] said:

@[Sh...], Wanted to chime in here. First of all, your wife is lucky to have a caring partner like you. I can answer question #1 and I am sure others will reply as well.

"she seems hypersensitized and susceptible to setbacks (POTS worsens and stays worse) and she has had multiple over the past few months, triggered by, among other things, emotional stress, hormonal/menstrual cycle, minute dose of a supplement she had been taking for year (1/60^th of her prior dose).  Has anyone else experiences this hypersensitization / multiple setbacks and how long did this continue?  Was there anything you could proactively do to break the cycle?"

This is not uncommon, there is no predictable timeline. There is nothing to do to break the cycle. Time is the best healer. It seems like asking someone to suffer inhumanely and it is to be honest. But we have to forge through. Social support is key. And helping the patient distract as much as possible. The brain can heal over time and the fewer complicating factors in the way of interventions the better in my experience and opinion. You might want to schedule a session with a coach like Angela Peacock or Melissa Boutilier -- they were both severe cases and are living their lives again. They also have more extensive information and knowledge about medications than other coaches in my experience. Angela teaches doctors about tapering so she really knows what she is doing.

Thank you!

[[...]]

Verepamil. 120 mg twice a day.