Dysautonomia

Hi Everyone. I started my taper off .75 mg of Klonopin in April of 2020. By December I was down to 6.5 mg and had a meltdown. I had a horrible time with my taper and my doctors kept telling me that I should be handling it better. I tried two Benzo-wise doctors that used the Ashton method. Even when I was tapering only by 1/2 mg of valium a month, I was a wreck. (My doctor switched me to valium early on.) My worst symptoms were anxiety, panic attacks and insomnia.

In December I called my regular doctor in a panic and she bumped me back up to 8 mg and I've been holding since. I am still having a very difficult time. I recently found out I have Dysautonomia and I already knew I had Hashimoto's. Both of these conditions have anxiety and insomnia as symptoms. I believe this may explain why I was having such a difficult time with my taper midway through.

I am at loss as to what to do. Dysautonomia doesn't really have a solid treatment. I live in panic everyday that my doctor will stop my prescription for Valium because she thinks I'm an addict now. She only gives me a 30 day supply at a time. But at the same time, I want off this stuff so I don't have to live in fear anymore. I can barely work now. I can't imagine starting a taper again. Do any of you have experience dealing with Dysautonomia and tapering at the same time? I have no idea what direction to take.  Thank you

I'm being worked up for Dysautonomia/POTS now.

I'll respond more later, as I have to go for my walk now!

 

Winnie

That would be great, Winnie! my doctor just said, yeah you have it and left me with nothing to do for it except use salt and take midodrine

 

hi whitewilliow..  so sorry your having a hard time.  i definatley can relate.  i had never heard a dysautonmia before.  i looked it up and the symptoms seem like the same that i feel all through my taper.  how do you know when its wd symptoms or dysautonmia?.  jill

Hi Everyone. I started my taper off .75 mg of Klonopin in April of 2020. By December I was down to 6.5 mg and had a meltdown. I had a horrible time with my taper and my doctors kept telling me that I should be handling it better. I tried two Benzo-wise doctors that used the Ashton method. Even when I was tapering only by 1/2 mg of valium a month, I was a wreck. (My doctor switched me to valium early on.) My worst symptoms were anxiety, panic attacks and insomnia.

In December I called my regular doctor in a panic and she bumped me back up to 8 mg and I've been holding since. I am still having a very difficult time. I recently found out I have Dysautonomia and I already knew I had Hashimoto's. Both of these conditions have anxiety and insomnia as symptoms. I believe this may explain why I was having such a difficult time with my taper midway through.

I am at loss as to what to do. Dysautonomia doesn't really have a solid treatment. I live in panic everyday that my doctor will stop my prescription for Valium because she thinks I'm an addict now. She only gives me a 30 day supply at a time. But at the same time, I want off this stuff so I don't have to live in fear anymore. I can barely work now. I can't imagine starting a taper again. Do any of you have experience dealing with Dysautonomia and tapering at the same time? I have no idea what direction to take.  Thank you

 

I have Dysautomnia. I’m on Metoprolol for it and it definitely helps.

I developed POTS after my first taper off unfortunately it was too much to handle and i reinstated. The POTS hasn't left since and even tho I take metropolol it helps very little and some days seems like it does nothing at all. I'm still tapering at a snail's pace now but every cut even ½ milligram cut leaves my nervous system a wreck for months.

sorry for the delay, I've been having a hard time myself!

 

So I don't have this diagnosis yet, but have a lot of symptoms, heart rate jumps by 30 bpm from lying to standing.

Feel like I'm going to pass out all the time etc.

 

I'm in the middle of a lot of tests for this, so I'll see more at my follow up in June.

 

They did have me increase my salt and fluids, which will increase your blood volume and also wear compression stockings to keep your blood from pooling in your legs and feet. Those help me a lot, although the salt gives me acid reflux.

They want me drinking at least 3 litres per day and taking in 8-10 gr of salt etc.

They also had me put the foot of my bed up higher by 4-6 inches.

 

There are medications to try, that do help some people.

Exercise, is also key to cure this, as it pumps your blood throughout your body and gets blood to your brain etc

 

If you are feeling extremely symptomatic, you can lie with your legs vertical against a wall and that should help a lot.

 

If you want more help, you can go to Dysautonomia International, lots of good information there.

 

For some, these symptoms can go away once you taper, others may have to deal with it long term after.

I think I might be the latter at this point. Like Deadmanwalking, any reduction I make, sends my CNS crazy with horrible physical symptoms - it's going to take me a long time to reduce at the rate I need to go.

 

The specialist I saw told me that definitely the benzo wd was making my sympathetic nervous system be in overdrive which would be making the POTS/Dysautonomia worse. I've always had low BP and a weird HR, but never had any issues before.

 

Not sure this helped at all.

 

Winnie

 

 

 

 

hi whitewilliow..  so sorry your having a hard time.  i definatley can relate.  i had never heard a dysautonmia before.  i looked it up and the symptoms seem like the same that i feel all through my taper.  how do you know when its wd symptoms or dysautonmia?.  jill

 

This is always the question!

 

I qualify for POTS based on my sitting BPM versus my standing BPM. It doesn't get in the way of my daily life too often, so I have not looked to treat it yet. Plus, it came up during WD, so I'm hesitant to start beta-blockers until I am completely off benzos and am as healed as I'm going to get. I'm hopeful it will go away in time. It's actually improved some since I have stabilized a bit on my taper.

 

One key thing I've learned about POTS is that it's important to keep your body moving. I set timers to be sure I get up and walk around during my work day. I take a walk around my neighborhood most days, too.

Hi Everyone . Thanks so much for your suggestions. I checked in with a group on Facebook and several people there said they thought their Benzo use caused Dysautonomia. However, I have to say, I was diagnosed with orthostatic hypotension 10 years before I started taking Klonopin for restless legs. But it's been the last couple years that my Dysautonomia symptoms have really flared. I don't have the Pots variety. I believe there are 14 types? I can't decide which one I have but my neurologist says I definitely have one of them.

 

Jillybean, I really don't know which comes first for most people. Like I said, I've heard some say the Benzos caused it and it wouldn't surprise me.

 

Deadmanwalking, I am in the exact same boat. I've been to two specialists and both thought I was overreacting with every cut. It would leave me an absolute wreck and there was no way I could handle 1/2 mg so then I cut down to .25 mg and had a meltdown. At that point, I stopped my taper.  I'm just now starting to feel a little normal and it's been 3 months. Next time I'm going to start at .12.5 mg cuts and if I do ok on that I may go up to .25 mg cuts. I may be long dead before I get this stuff out of my system.

Hi there I also have Dysautonomia before all this began and I’m having trouble with my regular Ambien doses. I hope we find a way to smoothly get through the transition into the clear. I will be seeing a benzo wise Dr. can you tell me what your symptoms have been like as you cut down?

Yes , I developed Dysautonomia from the bodily shock of the taper and finally withdrawal .My taper was  5 yrs long and I was very neurologically ill .. I have had just an otherworldly time with this .In the couple of years dealing with this, I have read that people who are withdrawing/withdrawn from other dangerous drugs( even alcohol )  also get this sometimes .

 

Its like my nervous system just gave up .  Things are somewhat better  now but it affected my ability to swallow , my bp has just bottomed out  80/50 , terrible  severe POTS for well over the first year and I still have issues with HR ( and no , all that water and salt stuff made it worse for me so I dont do that ) could not urinate and had to be cathed , now have to use tons of laxatives to get anything to move - Ive been diagnosed with neurogenic bladder and bowel . Medical community were incredulous that benzo withdrawal could do that but I never had these problems before . Its not perfect but I am just glad I don't need that cath anymore .

CallGrizzlyBear,

I would say my main symptoms during my valium taper are anxiety and insomnia. Best of luck to you!

I developed POTS after my first taper off unfortunately it was too much to handle and i reinstated. The POTS hasn't left since and even tho I take metropolol it helps very little and some days seems like it does nothing at all. I'm still tapering at a snail's pace now but every cut even ½ milligram cut leaves my nervous system a wreck for months.

 

I know other ppl that got dysautonomia /POTS from withdrawal.