When do the dysautonomia and pots symptoms go away???

[[Bi...]]

I cold turkeyed after just a month of use of diazepam January 1st.

A month ago I suddenly became worse, a lot worse. End of my rope was near, the suffering became more insufferable than ever.

Does dysautonomia and pots heal???? I need to hear stories of those healed PLEASE.

I keep getting told I'm early in withdrawal. I've had blood tests to check vitamin levels , thyroid etc, all fine. Doctor says I have anxiety. The medical system seems totally screwed and it seems GPs are not educated properly. Many on here seem gaslit by them. 

 

 

Edited November 13, 2023 by [Bi...]

[[Ho...]]

Is your dysautonomia high or low blood pressure?

 

[[Bi...]]

3 minutes ago, [[H...] said:

Is your dysautonomia high or low blood pressure?

Low BP

[[Bl...]]

Hi Birdypie,

Im still in the throws of withdrawal at 8 months off but I have see a noticeable improvement in the Pots and morning intense anxiety. Pots is almost gone,(touch wood) I am healing but, it's so hard to be patient I know. I hope you see some improvement soon.

[[Ka...]]

On 13/11/2023 at 05:02, [[H...] said:

Is your dysautonomia high or low blood pressure?

HI and Welcome Hope2001!

As far as POTS, the low BP (hypo-tension) seem to go hand in hand, does for me.

I am in an earlier stage of coming off the one benzo. So I cannot contribute to past one month of experience at this time.

Sorry to hear you are still having it, Byrdie. Please post and let us know how its going this months etc. hope it diminishes. @[Bi...] I just got up from a lounge chair earlier thinking Im doing so well, poof the dizzy, pots reappears. From everything I am reading this is quite slow going this journey. when you say worse, do you mean as in dizzy spells, POTS symptoms or more?

Also, have you (all)  had any symptoms dissipate? So far Im less dependent on it for actual sleep and so glad for that 😊

[[Ma...]]

I’m 8 months in and pots is getting so severe. Although Iv had symptoms of pots since a teen and I’m 32 now, I never let it affect my life.. now it’s 100x worse. Does this improve once your off benzo?

[[he...]]

I have had POTS symptoms for years, you have to heal your vagus nerve and brain in order for it to heal. Takes a long time but it helps if you don't let the symptoms scare you. 

[[Ma...]]

1 minute ago, [[h...] said:

I have had POTS symptoms for years, you have to heal your vagus nerve and brain in order for it to heal. Takes a long time but it helps if you don't let the symptoms scare you. 

I’ve lived with pots symptoms for over 15 years and never let it scare me. But now I stand and feel as if I’m being exsanguinated. Idk how to continue taper like this. Any suggestions? I already do vagal nerve exercises and like two hours of meditation and walks daily. Idk what else I can do to heal. 

[[he...]]

On 03/01/2024 at 20:43, [[M...] said:

I’ve lived with pots symptoms for over 15 years and never let it scare me. But now I stand and feel as if I’m being exsanguinated. Idk how to continue taper like this. Any suggestions? I already do vagal nerve exercises and like two hours of meditation and walks daily. Idk what else I can do to heal. 

Somatic therapy has been useful. I have hood and bad days and I’m not sure it will go away. Things that make it worse are inflammatory foods, dehydration, poor sleep (a big issue for me) and stress. I’m only 7 months out from my cut after a 7 month taper. It’s been tough but stick with it and try your best to find a good Dr. I am considering HBOT therapy but I need to save money first. 

[[Ma...]]

5 minutes ago, [[h...] said:

Somatic therapy has been useful. I have hood and bad days and I’m not sure it will go away. Things that make it worse are inflammatory foods, dehydration, poor sleep (a big issue for me) and stress. I’m only 7 months out from my cut after a 7 month taper. It’s been tough but stick with it and try your best to find a good Dr. I am considering HBOT therapy but I need to save money first. 

What symptoms do you have if you don’t mind me asking. Did your symptoms worsen as you tapered? I’m 5 months into tapering and at .18 mg Ativan. My symptoms are really debilitating but my mood/anxiety are stabilizing so idk whether to keep cutting or not 

[[he...]]

@[Ma...] it was actually really bad for me after I got off Xanax in 2020 but I didn’t know what it was and in 2021 I started klonopin and it got horrendously worse. It was bad after I cut first 4 months were the worst but I’ve been having windows of good days were my heart and BP want to cooperate. I most assuredly have HPA Axis dysfunction and was recently diagnosed with sleep apnea. I am doing everything in my power to eliminate toxins though we live in a moldy environment (working on it). I think what helped was a lot of grounding a calming. I’ve done EMDR, somatic therapy and an in the middle of TMS treatments. Can you tell I’m desperate? I’ve also done NAD infusions. I can say nothing has brought me more relief than a low histamine anti inflammatory diet and weight loss. Though most of the weight loss was not intentional. I was paying to get iv vitamin infusions. My cardiologist started me on weekly saline drips though I try to push it to 2 weeks bc I don’t want my body becoming dependent. The saline helps a ton with the pots too. 
 

my symptoms 

nausea 

feeling like the floor is falling out from under me or as if I’m going down in an elevator 

rapid heart rate sometimes out of no where. Jumps to 160-170 for no reason (monitor says tachy) 

bradycardia with extreme fatigue 

reactive hypoglycemia (the most terrifying) caught my BG at 42 one day after eating a banana 

randomly feel like I can’t breathe 

headaches 

I’ve just learned to deal with everything better too. 
 

diarrhea/ constipation 

low grade unexplained fever 

joint pain 

MCAS symptoms though I haven’t been diagnosed 

I was diagnosed with hEDS too. 
 

Typing quick at work so if anything needs clarification or you have more questions LMK

[[he...]]

@[Ma...]i failed to mention EXERCISE! Theirs is a POTS exercise group on FB that promoted the CHOP method. If you google it there’s free PDFS online. Walking, just start walking if you can and push your self just a little more each week. I started at 500 feet with a cane and now I’m at 2 miles unassisted. I lift weights now too! 

[[Ma...]]

5 hours ago, [[h...] said:

@[Ma...] it was actually really bad for me after I got off Xanax in 2020 but I didn’t know what it was and in 2021 I started klonopin and it got horrendously worse. It was bad after I cut first 4 months were the worst but I’ve been having windows of good days were my heart and BP want to cooperate. I most assuredly have HPA Axis dysfunction and was recently diagnosed with sleep apnea. I am doing everything in my power to eliminate toxins though we live in a moldy environment (working on it). I think what helped was a lot of grounding a calming. I’ve done EMDR, somatic therapy and an in the middle of TMS treatments. Can you tell I’m desperate? I’ve also done NAD infusions. I can say nothing has brought me more relief than a low histamine anti inflammatory diet and weight loss. Though most of the weight loss was not intentional. I was paying to get iv vitamin infusions. My cardiologist started me on weekly saline drips though I try to push it to 2 weeks bc I don’t want my body becoming dependent. The saline helps a ton with the pots too. 
 

my symptoms 

nausea 

feeling like the floor is falling out from under me or as if I’m going down in an elevator 

rapid heart rate sometimes out of no where. Jumps to 160-170 for no reason (monitor says tachy) 

bradycardia with extreme fatigue 

reactive hypoglycemia (the most terrifying) caught my BG at 42 one day after eating a banana 

randomly feel like I can’t breathe 

headaches 

I’ve just learned to deal with everything better too. 
 

diarrhea/ constipation 

low grade unexplained fever 

joint pain 

MCAS symptoms though I haven’t been diagnosed 

I was diagnosed with hEDS too. 
 

Typing quick at work so if anything needs clarification or you have more questions LMK

I’m sorry for what you’re going through :/ I’ve had a lot of those symptoms for about 15 years unfortunately, but now they’ve become so bad I’m barely functional. Interesting you have Ed’s, as pots commonly coexists. Good luck with TMS. Hope you feel better soon ! 

[[Ma...]]

5 hours ago, [[h...] said:

@[Ma...]i failed to mention EXERCISE! Theirs is a POTS exercise group on FB that promoted the CHOP method. If you google it there’s free PDFS online. Walking, just start walking if you can and push your self just a little more each week. I started at 500 feet with a cane and now I’m at 2 miles unassisted. I lift weights now too! 

Thank you so much !

[[Mu...]]

On 05/01/2024 at 13:12, [[h...] said:

@[Ma...]i failed to mention EXERCISE! Theirs is a POTS exercise group on FB that promoted the CHOP method. If you google it there’s free PDFS online. Walking, just start walking if you can and push your self just a little more each week. I started at 500 feet with a cane and now I’m at 2 miles unassisted. I lift weights now too! 

My wife has POTS and many of the same symptoms you mention.  She is afraid to get out of bed and move around unless her resting heart rate in bed is in the 80s.  Whenever she tries to exert herself when it is higher than that, she gets nauseous (often for hours), her legs will twitch (even when lying down) and will get neuropathy.  When you tried to exercise initially, did it it make a lot of your symptoms worse and you just had to push through?

[[Ma...]]

2 hours ago, [[M...] said:

My wife has POTS and many of the same symptoms you mention.  She is afraid to get out of bed and move around unless her resting heart rate in bed is in the 80s.  Whenever she tries to exert herself when it is higher than that, she gets nauseous (often for hours), her legs will twitch (even when lying down) and will get neuropathy.  When you tried to exercise initially, did it it make a lot of your symptoms worse and you just had to push through?

I know this person mentioned exercise but I cannot. It makes it worse and I’m a year out in withdrawal. I can walk about 2 miles a day in 2-3 separate walks. Strength training made me worse, not better. I think it’s different for everyone. I have her symptoms as well. She should just start out walking  at first as a baseline I would say and then if she can tolerate longer walks then she can start incorporating lying down weighted training using her body weight and then weights eventually 

[[he...]]

On 27/04/2024 at 10:33, [[M...] said:

My wife has POTS and many of the same symptoms you mention.  She is afraid to get out of bed and move around unless her resting heart rate in bed is in the 80s.  Whenever she tries to exert herself when it is higher than that, she gets nauseous (often for hours), her legs will twitch (even when lying down) and will get neuropathy.  When you tried to exercise initially, did it it make a lot of your symptoms worse and you just had to push through?

Hi Musashi, sorry for the delay. It took some time, I started out working out IN BED! Then went to a recumbent bike, worked my way up to now running (well I make it a block but you get the point). My heart rate gets up to the 160s with exercise in a normal healthy manner now. I used compression stockings and at times abdominal compression, I also did IV infusions ordered by my cardiologist, prior to her ordering them I would get them at a wellness center when I could afford them. People with POTS do better with low carb low sugar diets, small frequent meals help too. Finding the underlying cause is extremely helpful. 

 

Here is a link to the CHOP exercise program. Your wife will have to pace herself but recovery is doable. 

https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf

[[he...]]

On 27/04/2024 at 13:32, [[M...] said:

I know this person mentioned exercise but I cannot. It makes it worse and I’m a year out in withdrawal. I can walk about 2 miles a day in 2-3 separate walks. Strength training made me worse, not better. I think it’s different for everyone. I have her symptoms as well. She should just start out walking  at first as a baseline I would say and then if she can tolerate longer walks then she can start incorporating lying down weighted training using her body weight and then weights eventually 

Mao try the CHOP program. 

 

https://www.dysautonomiainternational.org/pdf/CHOP_Modified_Dallas_POTS_Exercise_Program.pdf

[[ma...]]

On 04/01/2024 at 02:41, [[h...] said:

I have had POTS symptoms for years, you have to heal your vagus nerve and brain in order for it to heal. Takes a long time but it helps if you don't let the symptoms scare you. 

Hey how can I heal my Vagusnerve?