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Dysautonomia (autonomic dysregulation) - POTS, syncope, etc.

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Altostrata

Let's hope it was only the one time. No use to worry about it, it may never happen again. It may not be a trend.

 

You have to have more than one incident for a trend.

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Maybe

Are those incidents common? I mean, do many have those experiences that far out?

It just does not feel like healing...

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NoMeaning25

Anyone know if this will work? http://blog.synergyhealthconcepts.com/new-treatment-for-dysautonomia/

 

Alto, is this actually what we are dealing with?? 

 

http://www.dinet.org/index.php/information-resources/pots-place/pots-symptoms Is withdrawal just dysautonomia or is it a combination of things?

 

Im just trying to figure out whats wrong with me so that i can at least show my mom what im dealing with and find a doctor willing to work with me. 

 

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Wildflower0214

I was diagnosed with POTS when i was 16, which is a form if dysautonomia. I saw a dr about a year ago who told me that they thought I had severe adrenal fatigue instead. Who knows what the validity of that claim was.

 

Anyways, if I do indeed have POTS, that would mean that my nervous system was already screwed up, so this SSRI WD is not helping. I feel like my WD is pretty sh*ty compared with most. Wondering if this plays a role. Anyone else have any nervous system stuff or autoimmune disease?

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degen12

I have POTS that is linked to a rapid (6-week) benzo withdrawal. I was hospitalized for a week before benzodiazepines were reinstated. My symptoms rapidly improved and I could finally stand without pre-syncope and a HR of over 160. I never returned to my former baseline however, and a course of Florinef is probably in order for me.

 

It is possible that WD from SSRIs could worsen POTS, since SSRIs increase the standing vasoconstrictive reflex, but I am not a doctor nor an expert in dysautonomia.

 

I suggest you register at the Dinet forums, if you have not already. There are many knowledgeable people there and they can help you find an expert in your area. If you have dysautonomia, it needs treatment.

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Altostrata

It would be interesting to hear what a dysautonomia expert (usually, a neurologist) knows about iatrogenic dysautonomia.

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Wildflower0214

I have POTS that is linked to a rapid (6-week) benzo withdrawal. I was hospitalized for a week before benzodiazepines were reinstated. My symptoms rapidly improved and I could finally stand without pre-syncope and a HR of over 160. I never returned to my former baseline however, and a course of Florinef is probably in order for me.

 

It is possible that WD from SSRIs could worsen POTS, since SSRIs increase the standing vasoconstrictive reflex, but I am not a doctor nor an expert in dysautonomia.

 

I suggest you register at the Dinet forums, if you have not already. There are many knowledgeable people there and they can help you find an expert in your area. If you have dysautonomia, it needs treatment.

The problem is, because of this WD, I can't tokerate meds at all. So not much to treat. And for that matter, my POTS has not returned. I haven't had the rapid heart rate etc. I'm wondering if I ever had it at all.

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degen12

 

I have POTS that is linked to a rapid (6-week) benzo withdrawal. I was hospitalized for a week before benzodiazepines were reinstated. My symptoms rapidly improved and I could finally stand without pre-syncope and a HR of over 160. I never returned to my former baseline however, and a course of Florinef is probably in order for me.

 

It is possible that WD from SSRIs could worsen POTS, since SSRIs increase the standing vasoconstrictive reflex, but I am not a doctor nor an expert in dysautonomia.

 

I suggest you register at the Dinet forums, if you have not already. There are many knowledgeable people there and they can help you find an expert in your area. If you have dysautonomia, it needs treatment.

The problem is, because of this WD, I can't tokerate meds at all. So not much to treat. And for that matter, my POTS has not returned. I haven't had the rapid heart rate etc. I'm wondering if I ever had it at all.

 

 

What symptoms of dysautonomia are you experiencing? Do you have a blood pressure monitor. You can always go to a search engine and learn about the "poor man's tilt table test". Still I recommend you go to the website I suggested, which has a list of dysautonomia experts. Since you are in the US your search will be much easier.

 

 

@Altostrata: I'm not sure, but a resident at a local ER told me that benzodiazepine withdrawal can cause dysautonomia, without my prompting her. She just knew that I was a dysautonomniac and was on benzodiazepines.

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Wildflower0214

 

 

 

I have POTS that is linked to a rapid (6-week) benzo withdrawal. I was hospitalized for a week before benzodiazepines were reinstated. My symptoms rapidly improved and I could finally stand without pre-syncope and a HR of over 160. I never returned to my former baseline however, and a course of Florinef is probably in order for me.

 

It is possible that WD from SSRIs could worsen POTS, since SSRIs increase the standing vasoconstrictive reflex, but I am not a doctor nor an expert in dysautonomia.

 

I suggest you register at the Dinet forums, if you have not already. There are many knowledgeable people there and they can help you find an expert in your area. If you have dysautonomia, it needs treatment.

The problem is, because of this WD, I can't tokerate meds at all. So not much to treat. And for that matter, my POTS has not returned. I haven't had the rapid heart rate etc. I'm wondering if I ever had it at all.

What symptoms of dysautonomia are you experiencing? Do you have a blood pressure monitor. You can always go to a search engine and learn about the "poor man's tilt table test". Still I recommend you go to the website I suggested, which has a list of dysautonomia experts. Since you are in the US your search will be much easier.

 

 

@Altostrata: I'm not sure, but a resident at a local ER told me that benzodiazepine withdrawal can cause dysautonomia, without my prompting her. She just knew that I was a dysautonomniac and was on benzodiazepines.

Well, I have all kinds but that is because I am going through a crappy SSRI WD. So, I can't use that as an indicator of what I would be experiencing without this circumstance. I had it starting when I was 13 and until 16 it was a problem. They put me a beta blockers for a few years and I hated them. Went off. I worked a full time job for several years on no med at all and was ok with it, until my mom got cancer and I ended up on an SSRI. And now I'm here.

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Wildflower0214

They actually treat dysautonomia with SSRIs. Lol

They tried to put me on Paxil when I was diagnosed. I have another friend who has POTS and they practically shoved them down her throat.

It's pretty standard practice. Frightening. That's a large part of how I ended up on Lexepro. So, unless someone finds a neurologist who is different from the five I've seen or the half dozen my friend has seen who has this, they are gonna push beta blockers or AD. Take your pick. :( that at least has been my experience. And I've been dealing with dysautonomia and neurologists for about 16 years with this. They just keep repeating the same mantra.

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Altostrata

merged similar topics

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ikam

It makes me wonder how it is with people who were exposed to severe trauma in childhood. I know for sure that my autonomic nervous system was constantly in fight flight freeze response. So my system never had chance to develop more balanced response...

I have gone through many years of therapy, but my body still responds with alarm...then I need to get back to reality, check if my reaction is relevant to the trigger, etc. Something like with neuro-emotions, I need to check if I respond from here and now or from my past...

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pepper59

I have been told by my neurologist that I have gluten-sensitive small fiber neuropathy which started as pain and has progressed to dysautonomia. The pain from the neuropathy improved greatly with dietary changes, so it made no sense that the autonomic symptoms would have worsened. I think the dysautonomia is actually from trazodone, which I am trying to wean off of. 

 

I have a great, nutrition-oriented primary doctor. She recommended I eliminate every speck of gluten and stick to a strict, anti-inflammatory diet based on the principles in the book It Starts With Food. This is not an easy diet. I had to learn to cook and eat all over again. It took months. But I was very motivated because I was in such terrible pain. I still have occasional scary flares of pain (which hugely trigger my anxiety), but the pain is now mostly under control. I would never, no never go back to eating the way I used to. 

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ikam

I have been told by my neurologist that I have gluten-sensitive small fiber neuropathy which started as pain and has progressed to dysautonomia. The pain from the neuropathy improved greatly with dietary changes, so it made no sense that the autonomic symptoms would have worsened. I think the dysautonomia is actually from trazodone, which I am trying to wean off of. 

 

I have a great, nutrition-oriented primary doctor. She recommended I eliminate every speck of gluten and stick to a strict, anti-inflammatory diet based on the principles in the book It Starts With Food. This is not an easy diet. I had to learn to cook and eat all over again. It took months. But I was very motivated because I was in such terrible pain. I still have occasional scary flares of pain (which hugely trigger my anxiety), but the pain is now mostly under control. I would never, no never go back to eating the way I used to.

 

I am going to meet naturopath soon. I really need to get good consultation on food and supplements. She helped me in the past and she also works with people who have been put on various meds (not just antidepresants)...

 

For me disautonomia relates to my childhood trauma...so i think it is set for life, I have always responded to many stimuly in oversensitive manner...

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Lovofsun

Hi guys... 

Im in a bad place at the moment and struggling to stabilise....

I have very high anxiety and aches and pains which cause more anxiety and now a new symptom have come in to play


I think its POTs... I can feel relaxed (even with anxiety going through my head) when im sitting and lying down but when i get up to move around i get breathless, sweating, heart racing, shaking and high anxiety for about 30-60secs after standing...

I also get heart racing after i sit up from lying down...
 

 

 

It then subsides and my heart rate goes down and i start to feel better....


Is this WD or should i seek help?


  

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WiggleIt

I have the same thing.  In my case, I don't think I have POTS; I think the medication-induced damage in my body is mimicking POTS.     

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Wildflower0214

I was diagnosed with POTS when I was 16. I think mine was brought on by trauma...

 

The only tips I can offer are

1) make sure you eat small meals throughout the day

2) make sure you get plenty of salt

3) make sure you drink plenty of water.

 

These things have made life easier for me.

 

From recent info I have read, POTS is not a disease in and of itself, it's a symptom...of overall autonomic nervous system chaos, which can be caused by trauma...and who knows what else. It seems the more I learn, the more confused I get about it.

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vonant

Hello. I want to inquire about dysautonomia. It is pretty well reported I think that most of us suffer from issues related to the autonomic nervous system. Here are the primary symptoms as listed on wikipedia. Lately I experience pretty much all of these. 

.

 

I want to enquire specifically about THIRST and DISTENTION OF THE ABDOMEN and EXCESSIVE SWEATING. These I have had pretty much since terminating Citalopram. Even towards the end of being on them. Wearing a black t-shirt leaves me with basketball sized sweat pockets under my arms. My belly changes in size and sometimes I looks like I'm pregnant (I'm a 26 yo male). And I drink loads and loads of water. Always thirsty. I want to know if other people experience this exactly because I havn't heard much reporting on these, and I fear I am developing auto immune disorder which shares these.

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Altostrata

Here's an interesting article about supplements for POTS and other autonomic problems http://thelowhistaminechef.com/dr-diana-driscoll-interview-vagus-nerve-and-potsmast-cell-activation/

 

It's an interview with Dr. Diana Driscoll, an optometrist who suffers from POTS and other autonomic ailments. She traces this to vagus nerve dysfunction due to a lack of acetylcholine. (This is related to some kind of anti-cholinergic activity, drug-caused or otherwise.)

 

To treat this, Dr. Driscoll has developed a rather expensive supplement containing ingredients that may be stimulating:

  • Huperzine A
  • Alpha-GPC (Alpha GlyceroPhosphoCholine)
  • Acetyl L-Carnitine
  • Vitamin B-1 (Thiamine)

All of these are available individually. If you decide to try them, try one at a time in tiny, fractional doses and see how you do. Please let us know your results in this topic

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Altostrata

Here's an interesting article about supplements for POTS and other autonomic problems  http://thelowhistaminechef.com/dr-diana-driscoll-interview-vagus-nerve-and-potsmast-cell-activation/

 

It's an interview with Dr. Diana Driscoll, an optometrist who suffers from POTS and other autonomic ailments. She traces this to vagus nerve dysfunction due to a lack of acetylcholine. (This is related to some kind of anti-cholinergic activity, drug-caused or otherwise.)

 

To treat this, Dr. Driscoll has developed a rather expensive supplement containing ingredients that may be stimulating:

  • Huperzine A
  • Alpha-GPC (Alpha GlyceroPhosphoCholine)
  • Acetyl L-Carnitine
  • Vitamin B-1 (Thiamine)
All of these are available individually. If you decide to try them, try one at a time in tiny, fractional doses and see how you do. Please let us know your results in this topic.

 

I don't know if Dr. Driscoll's theory is correct. This is not a recommendation for her products.

 

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daddybuggaorange

That Parasym Plus has phosphyl Choline in it which effects acetylcholine levels...dangerous?  I relaly want to try phosphatidylserine again but scared to try anything that impacts any neurotransmitter; I guess PS can impact dopamine as well?  

 

I have POTS that started when I came off Klonopin.  They prescribed atenolol which is a beta blocker that gets my heart rate down to where it used to be, but it has some anticholergenic properties, and I definitely have anticholergenic syndrome.  I can't take bentyl or benadryl without a severe, adverse reaction.  I'd like to be off 

 

I was at Mayo clinic last February and failed all 3 of their autonomic nervous function tests while on atenolol.  My POTS seems to come and go.  Some times I can stop taking atenolol for awhile, then the orthostatic hypotension hits, heart rate goes way up, and I have to re-instate on the atenolol.   

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Alpha23

Just wondering if anyone has done a tilt table test to check for autonomic dysfunction. Apparently, they give you a drug to stimulate your heart which worries me a bit. Could doing this test possibly make antidepressant related heart symptoms worse since we are so sensitive to drugs?

 

I'm interested in doing this test because when I stand up after sitting down I get very light headed so suspect I have orthostatic hypotension (postural hypotension). 

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AprilShowers

I had a hospital tilt table test a couple of years ago after some fainting spells. I was taken by a friend and had no after effects. They diagnosed vasovagal syncope and told me not to stand for too long and to drink plenty water to keep my body hydrated as it helps. 

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Alpha23

Hi AprilShowers, did they give you any drugs during the test, and if so was it through an IV?

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Altostrata

As AprilShowers noted, it's important to keep hydrated to keep your blood pressure up.

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AprilShowers

Hi AprilShowers, did they give you any drugs during the test, and if so was it through an IV?

They gave me a drink. I had no after effects. I did have someone with me though so I wasn't driving myself home or anything. 

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virgo43

Dear members. 

I am new to this forum.

My body is showing fight flight response every time I lower the dose.

 

Cns imbalance

Dysautonomia

Hpa axis dysfunction

 

What ever it is called.

I am 100% sure if I taper off fully I will enter into delirium tremans.

 

Please read my posts. Since the day I took meds my life has been difficult very difficult.  Last month was absolute hell.

 

What can I do?

How can the receptors nerves upregulate?

 

I haven't had homeostasis since day one.

 

 

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tryingtosurvive

I read articles of persisting dizzyness after prozac- is this something that can come up 4 years after CT ?

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bhasski

These drugs sucks.. I am 26 months off paxil.. and other drugs and still have dizzy slow head.. Fatigued.. 

 

I know your question asked for post 48 months.. But who knows about symptoms and recovery time.?

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Altostrata

Please see posts above.

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KMart95

I was diagnosed with POTS a few months back after stopping Benzos, Prozac and birth control. I was completely unable to stand up and was in a wheelchair in the ER constantly for weeks. The doctors gave me so much fluid thinking I was continually getting dehydrated. The internal medicine doctors told me the extreme drop in blood pressure and rapid heart rate when I stood up was all anxiety and that made my blood boil. I was miserable. It's still bad at times, but i've got a handle on it with frequent light exercise, electrolyte drinks, compression socks, good sleep and I make sure I don't take any meds or supplements that can decrease my blood pressure. 

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Vonnegutjunky

So I am actively looks for a doctor who treats dysautonomia. I have had this my entire life, I never even knew there was such a thing. I was diagnosed with Cfs, but I think the dysautonomia is the culprit of the cfs. 

 

If anyone knows what kind of doctor I need to go to? That would be really helpful. 

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Kronos18

Is withdrawal induced POTS going to get better in time?This is my main concerning symptom right now

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emilie

The doctor said an explanation for my evening crisis.

I do vasovagal syncope when i defaecate.

 

i have searched on google and find defaecation syncope.

 

i knew i did vasovagal syncope if it was too hot temperature, and if i stand up long.

But i didn't knew when i defecate too (poo).

The doctor just said to me to lengthen and lift legs when i do a syncope.

The last time it arrive, it was with my family when evening dinner... you eat and your bowel move and make syncope...

 

i start this post just to know if others have that, and if it had goes away with time.

(i have stop medication 2 years ago)

 

 

 

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Altostrata

@emilie this topic discusses vasovagal syncope.

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