POTS

Hey guys,

 

Any of you suffer or have suffered from withdrawal induced POTS?

 

If so, to what degree? I match all the symptoms and currently in the process of having a formal diagnosis. I'm basically bedridden because of this, whenever I stand or try to walk I get insane dizziness, confusion, worsening of vision and lots of other neurological symptoms. When I'm laying on my back it seems to calm down somewhat. The exercise intolerance is driving me insane. Anyone successfully treated their POTS in withdrawal or did it go away on its own?

 

Staunch

Hi

 

I am so sorry you are going through this. It sounds horrible.

 

I just have a few questions

 

Why do you need a formal diagnosis?

 

In what way do you think you will treat it if it is withdrawal induced?

 

 

I have been on the forums for many years.

 

The only way out of this mess is to go through it...Trying to treat symptoms with other things generally just makes the nervous system more sensitive and longer healing time.

 

I'm not trying to dishearten you at all. I also have this issue but maybe not to the extent you describe..ie when I stand up I get dizzy and have symptoms for around five minutes like this but once I start moving/walking around it generally dissipates to a lesser degree.

 

I know yours sounds horrible and my heart goes out to you. I'm just worried that adding anything else to a fragile nervous system to treat symptoms is the concern,

 

 

What you need are coping strategies to get through it so I hope someone else can come on and share with you as to how they get through it because it will eventually go away.

 

Shania

 

 

Hi

 

I am so sorry you are going through this. It sounds horrible.

 

I just have a few questions

 

Why do you need a formal diagnosis?

 

In what way do you think you will treat it if it is withdrawal induced?

 

 

I have been on the forums for many years.

 

The only way out of this mess is to go through it...Trying to treat symptoms with other things generally just makes the nervous system more sensitive and longer healing time.

 

I'm not trying to dishearten you at all. I also have this issue but maybe not to the extent you describe..ie when I stand up I get dizzy and have symptoms for around five minutes like this but once I start moving/walking around it generally dissipates to a lesser degree.

 

I know yours sounds horrible and my heart goes out to you. I'm just worried that adding anything else to a fragile nervous system to treat symptoms is the concern,

 

 

What you need are coping strategies to get through it so I hope someone else can come on and share with you as to how they get through it because it will eventually go away.

 

Shania

 

 

 

I guess I don't really need a formal diagnosis, I know it's got to be correlated to benzo wd. I've had some other compounding issues over time such as a concussion etc which has complicated my journey slightly. I've been in withdrawal for 5 years now after 2 cold turkeys and a failed taper.  The end is nowhere near in sight for me. I'm atrophying badly from my inability to move around. I'm not getting adequate blood flow at all. I struggle to walk 100m. Usually I'll get severe vertigo, confusion, visual issues and my heart will be pounding out of my chest coupled with severe agitation that can last from days to week(s). When I talk about treating it, I'm hoping holistically, like protocols with hydration/salt intake/ electorates etc. dealing with this chronic pain and unable to move is weighing heavily on my ability to cope as I'm approaching my 5 year mark. I'm getting very restless, just merely wasting away in this room. Sorry to sound depressing but I just figured I would paint a more thorough picture and history for you. 2 years ago I could go to the gym and there was no issues with exerting myself at all.

 

Where are you at in your withdrawal? I hope you are managing as best you can.

 

Staunch

Sorry you have been hit with POTS. Before replying, i nneed to point out that I am a hard case,  having beeen badly floxed and kindled after a prior CT

 

I have had 2 bouts of POTS the first when i knew nothing about Benzos or what migght be producing symptoms, (typing on phone so please ignore typos which take too long to correct).

 

This initial bout did last months but was much milder than the most recent in that i was largely bedridden but could still sit up, get to the bathroom & even carefully shower.

 

The second time it was so bad that I could no longer sit up & my resting BP was also so low, it was difficult to move in bed let alone drink or eat. Ended up in hospital & was eventually dxd  by neurologist and cardiologist with severe autonomic dystomia and POTS.

 

I dont want to muddle this thread with details of my personal circumstances which make it impossible for me to be 100% incapacitated all the time, ( sole surviving child of elderly parents and caref for BIL with dementia).

 

Bottom line is that this time, I accepted the drugs option after 4 months of wasting away. The good news is that the meds got me to walk to the bathroom again, then out of the wheelchair & after a few more months even hiking again.

 

One of the traditional meds if drugs are neede is a aldosterone replacement like florinef. I aslo drank buckets of salty electrolyte drinks & wore compression stockings.SSRIs can also help stabilise BP again but i didnt perist with the lexapro as it seemed to cause major fatigue.

 

This treatment did help somewhat & given that you are still tapering, hopefully you willget some relief.

 

If this isnot enough,you may want to consider slowing and/or up dosing your taper.

 

Alternatively, if you have the option, there are exercises you can do in bed while you wait for your brain to sort it out.

 

The severity of the POTS has been the cruelest thing fro me to deal with and I really hope you find a workaround.

I have POTS.  It was missed a few years back.  They started me on klonopin thinking I had atypical migraines, which were actually POTS.  The klonopin made the POTS worse.

 

I am sorry you have POTS symptoms.  They are no fun. I take florinef, atenolol, salt tablets and drink 100oz of water for my POTS.  I also wear compression socks.  Exercise was very hard in the beginning.  I could row for 1 minute and then I would sleep for hours.  I am now up to 40 minutes with no problem BUT this took about 4 months.

 

At my worse, I was bedridden and had to use a wheelchair but slowly I am able to do so much more.

 

Please hang in there and know that with the right treatment, POTS can be managed.

 

 

Sorry you have been hit with POTS. Before replying, i nneed to point out that I am a hard case,  having beeen badly floxed and kindled after a prior CT

 

I have had 2 bouts of POTS the first when i knew nothing about Benzos or what migght be producing symptoms, (typing on phone so please ignore typos which take too long to correct).

 

This initial bout did last months but was much milder than the most recent in that i was largely bedridden but could still sit up, get to the bathroom & even carefully shower.

 

The second time it was so bad that I could no longer sit up & my resting BP was also so low, it was difficult to move in bed let alone drink or eat. Ended up in hospital & was eventually dxd  by neurologist and cardiologist with severe autonomic dystomia and POTS.

 

I dont want to muddle this thread with details of my personal circumstances which make it impossible for me to be 100% incapacitated all the time, ( sole surviving child of elderly parents and caref for BIL with dementia).

 

Bottom line is that this time, I accepted the drugs option after 4 months of wasting away. The good news is that the meds got me to walk to the bathroom again, then out of the wheelchair & after a few more months even hiking again.

 

One of the traditional meds if drugs are neede is a aldosterone replacement like florinef. I aslo drank buckets of salty electrolyte drinks & wore compression stockings.SSRIs can also help stabilise BP again but i didnt perist with the lexapro as it seemed to cause major fatigue.

 

This treatment did help somewhat & given that you are still tapering, hopefully you willget some relief.

 

If this isnot enough,you may want to consider slowing and/or up dosing your taper.

 

Alternatively, if you have the option, there are exercises you can do in bed while you wait for your brain to sort it out.

 

The severity of the POTS has been the cruelest thing fro me to deal with and I really hope you find a workaround.

 

Thank you for your response. I have been severely kindled also and experiencing debilitating withdrawal symptoms for 5 years despite the slow pace of my current taper - the damage is done.

 

I'm sorry you have such a horrible time with this. How long has each POTS episode lasted for you? I've been mostly bedridden for around 24 months but I'm not sure how much is due to POTS.

 

Was florinef the drug that you used? I'm extremely med sensitive and cannot even tolerate many supplements. Not sure I would tolerate a corticosteroid.

 

Appreciate your response

 

Staunch

I have POTS.  It was missed a few years back.  They started me on klonopin thinking I had atypical migraines, which were actually POTS.  The klonopin made the POTS worse.

 

I am sorry you have POTS symptoms.  They are no fun. I take florinef, atenolol, salt tablets and drink 100oz of water for my POTS.  I also wear compression socks.  Exercise was very hard in the beginning.  I could row for 1 minute and then I would sleep for hours.  I am now up to 40 minutes with no problem BUT this took about 4 months.

 

At my worse, I was bedridden and had to use a wheelchair but slowly I am able to do so much more.

 

Please hang in there and know that with the right treatment, POTS can be managed.

 

Thank you for your response. It is reassuring to hear.

 

Are you off of klonopin? How are your withdrawal symptoms now?

Sorry you have been hit with POTS. Before replying, i nneed to point out that I am a hard case,  having beeen badly floxed and kindled after a prior CT

 

I have had 2 bouts of POTS the first when i knew nothing about Benzos or what migght be producing symptoms, (typing on phone so please ignore typos which take too long to correct).

 

This initial bout did last months but was much milder than the most recent in that i was largely bedridden but could still sit up, get to the bathroom & even carefully shower.

 

The second time it was so bad that I could no longer sit up & my resting BP was also so low, it was difficult to move in bed let alone drink or eat. Ended up in hospital & was eventually dxd  by neurologist and cardiologist with severe autonomic dystomia and POTS.

 

I dont want to muddle this thread with details of my personal circumstances which make it impossible for me to be 100% incapacitated all the time, ( sole surviving child of elderly parents and caref for BIL with dementia).

 

Bottom line is that this time, I accepted the drugs option after 4 months of wasting away. The good news is that the meds got me to walk to the bathroom again, then out of the wheelchair & after a few more months even hiking again.

 

One of the traditional meds if drugs are neede is a aldosterone replacement like florinef. I aslo drank buckets of salty electrolyte drinks & wore compression stockings.SSRIs can also help stabilise BP again but i didnt perist with the lexapro as it seemed to cause major fatigue.

 

This treatment did help somewhat & given that you are still tapering, hopefully you willget some relief.

 

If this isnot enough,you may want to consider slowing and/or up dosing your taper.

 

Alternatively, if you have the option, there are exercises you can do in bed while you wait for your brain to sort it out.

 

The severity of the POTS has been the cruelest thing fro me to deal with and I really hope you find a workaround.

 

Thank you for your response. I have been severely kindled also and experiencing debilitating withdrawal symptoms for 5 years despite the slow pace of my current taper - the damage is done.

 

I'm sorry you have such a horrible time with this. How long has each POTS episode lasted for you? I've been mostly bedridden for around 24 months but I'm not sure how much is due to POTS.

 

Was florinef the drug that you used? I'm extremely med sensitive and cannot even tolerate many supplements. Not sure I would tolerate a corticosteroid.

 

Appreciate your response

 

Staunch

 

The POTS has not been the predominant problem for me. The first time round it was an adjunct to the chronic fatigue and was not so bad that I could not sit up gradually and even walk to the bathroom if taken very slowly to allow BP to adjust.

 

The most recent attack was totally disabling. I didnt have enough BP even to sit up & it totally failed to adjust to any larger movements. I did take florinef which blew me up like an animal ballooon, particularly on my legs but did help with the POTS.

 

Although its a major aggravation, (sliding on my butt to the bathroom, or anywhere else i needed to get in the apartment, if no one was home, was a real head  trip), i dont think that POTS is my real problem.

 

It just seems that the shock to my nervous system has emerged as POTS on occasion. I have been on the POTS sites and didn’t find cases where it went from hospitalisation to gone after a couple of days of florinef.

 

POTS is treatable as Moving Forward says, (great name BTW). In isolation, it would be a better deal than this benzo induced extreme fatigue which doesn’t seem to respond to anything. I am in a current bed ridden wave & am hanging out for it to lift so I can exercise again.

 

The exercise thing is a vexed question because until we understand the biochemical mechanism by which the benzo damage has induced the fatigue, its hard to know whether exercise stress is helpful.

 

I am in a clinical trial where my previous  biochemistry professor is narrowing down the biochemical deviations which may be responsible for chronic fatigue symptoms which can be very similar for some benzo injured.  The CFS research now suspects that pushing exercise may add to the inflammatory problem & delay recovery like running on a sprained ankle.

 

OTOH, there are studies endorsing exercise for cancer patients.

 

I have been at this for as long as you but my pattern has been very much windows and waves. Often in windows, i have been close to 100%, the wave that hit me last Christmas had me hospitalised and bed ridden again for 4 months, the longest since original acute.

 

In windows, i have exercised at a fairly intense level, full day hikes including mountaineering & kettlebells & body weight  workouts. I am not healed but without the exercise, i dont know how my psyche would have fared.

 

My initial acute period was very bed ridden, it could well have been a year but i knew nothing about benzos back then & Drs had no idea so it was all a blur without any records. I did return to functional until the Cipro did me in so after 2 years, your prospects for getting out of bed have to be good.

 

Knocking out the POTS symptoms probably won’t return full exercise capacity but may allow you to start a graded program. Whenever I can only manage a level that I would previously have regarded as suitable for day 1 rehab for a multiple injury victim, i try to remember that my brain is that injured & the muscle memory for the tougher stuff will be there when my CNS can handle it.

 

Best wishes

I have POTS.  It was missed a few years back.  They started me on klonopin thinking I had atypical migraines, which were actually POTS.  The klonopin made the POTS worse.

 

I am sorry you have POTS symptoms.  They are no fun. I take florinef, atenolol, salt tablets and drink 100oz of water for my POTS.  I also wear compression socks.  Exercise was very hard in the beginning.  I could row for 1 minute and then I would sleep for hours.  I am now up to 40 minutes with no problem BUT this took about 4 months.

 

At my worse, I was bedridden and had to use a wheelchair but slowly I am able to do so much more.

 

Please hang in there and know that with the right treatment, POTS can be managed.

 

Thank you for your response. It is reassuring to hear.

 

Are you off of klonopin? How are your withdrawal symptoms now?

 

Yes...I stopped the Klonopin in February. I am seeing improvements and have many windows.  The waves come and go - as waves do - and this side of the journey is nothing like the taper.

I developed pots about a month ago. It came on very suddenly. I have been in a wheelchair since then. I haven't been offered meds, still waiting on all my tests to come back. I never had any issues prior to Benzos.