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

[Terry4949]

On 7/23/2022 at 10:53 AM, FeralCatman said:

I have been researching nasal symptoms and autonomic dysfunction. Turns out there is a thing called non-allergic rhinitis. Basically it's allergy symptoms with no allergy. One of the suspected causes is autonomic dysfunction. This could be an inherent dysautonomia or it could be a withdrawal induced autonomic dysfunction or drug-induced autonomic dysfunction could do it as well. I noticed that after I started Seroquel my allergies got much worse. Seroquel is a powerful antihistamine so it didn't make a lot of sense. However if the Seroquel was creating an autonomic imbalance it could create the condition of non allergic rhinitis. Here are a couple of links to the national library of medicine discussing this.

 

https://pubmed.ncbi.nlm.nih.gov/17050315/

 

https://pubmed.ncbi.nlm.nih.gov/11081594/

I have this I have had it for 3 years now makes me feel awful I think some of my fatigue is due to it I was given antibiotics and nasal sprays steroids but they never did anything then had allergy test but nothing was found my sinuses are always full and cause me a lot of pain but I can breath ok I have no running of the nose but I have always had a constant mucus at the back of my throat been waiting over 2 years now to have a hospital appointment to see if there is anything they can do it’s very interesting that you have mentioned this 

[Ariel]

@Terry4949

 

2 hours ago, Terry4949 said:

my sinuses are always full and cause me a lot of pain but I can breath ok I have no running of the nose but I have always had a constant mucus at the back of my throat

 

See the topic below on NAC. Make sure you read through it carefully. 

NAC can help with mucus and phlegm symptoms. I use it sometimes and it works well for me. 

However please note also that some members have reported possible bad reactions.

There's no guarantee. 

And remember, only one change at a time (just replied to you in the magnesium thread). 

 

 

[tsranga]

On 7/24/2022 at 1:53 PM, rebeccaannxo said:

It’s a severe adverse reaction. But I’m trying to figure out what is making it so I can’t walk or stand for long. 

it just may be an hypersensitive and fatigued nervous system. sometimes all we can do is accept that we dont know, and trust that the body is trying to heal all the time.

[tsranga]

On 7/23/2022 at 2:53 AM, FeralCatman said:

I have been researching nasal symptoms and autonomic dysfunction. Turns out there is a thing called non-allergic rhinitis. Basically it's allergy symptoms with no allergy. One of the suspected causes is autonomic dysfunction. This could be an inherent dysautonomia or it could be a withdrawal induced autonomic dysfunction or drug-induced autonomic dysfunction could do it as well. I noticed that after I started Seroquel my allergies got much worse. Seroquel is a powerful antihistamine so it didn't make a lot of sense. However if the Seroquel was creating an autonomic imbalance it could create the condition of non allergic rhinitis. Here are a couple of links to the national library of medicine discussing this.

 

https://pubmed.ncbi.nlm.nih.gov/17050315/

 

https://pubmed.ncbi.nlm.nih.gov/11081594/

 

 yes.. in my experience I have found that non allergic rhinitis, IBS and leg paresthesia are manifestations of the autonomic nervous system as it adapts to its environment and balances circulation/blood flow/pressure.  Almost all the time, when the gut is moving well, I am symptom free, and when it is not, I have symptoms in my sinuses and legs until the gut resolves itself.

[FeralCatman]

I found another reference for 'Non-Allergic Rhinitis'. According to the Mayo Clinic it can have multiple causes including certain medications. Over the years I have been on NSAIDS, Sedatives (benzos, antipsychotics, atypical antipsychotics), antidepressants, and beta blockers. I was also a medication induced diabetic and have thyroid disease. All listed as potential causes for non-allergic rhinitis. No wonder my allergies seemed to get worse and yet allergy meds did not really consistently help. In fact they probably contributed to a worsening of the condition. So, in addition to withdrawal induced dysautonomia the meds themselves can also cause this.

 

The wonders of modern poly-pharmacy seem to be unending🤨

 

Here is the link from the Mayo Clinic  

 

https://www.mayoclinic.org/diseases-conditions/nonallergic-rhinitis/symptoms-causes/syc-20351229

 

Triggers of nonallergic rhinitis can include:

• Irritants in the air. These include dust, smog and cigarette smoke. Strong odors such as perfumes also can cause the symptoms to start. So can chemical fumes, including fumes some workers might get exposed to at their jobs.
• Weather. Changes in temperature or humidity can trigger swelling in the lining of the nose. This can cause a runny or stuffy nose.
• Infections. Illnesses caused by a virus often cause nonallergic rhinitis. These include a cold or the flu.
• Foods and drinks. Nonallergic rhinitis can happen when you eat. Hot or spicy foods are the main triggers. Drinking alcohol also can cause the tissue that lines the inside of the nose to swell. This can lead to a stuffy nose.

• Some medicines. These include aspirin and ibuprofen (Advil, Motrin IB, others). High blood pressure medicines such as beta blockers also can cause symptoms.

  Medicines that have a calming effect, called sedatives, can trigger nonallergic rhinitis too. So can medicines for depression. Birth control pills and medicines that treat erectile dysfunction also can trigger the symptoms. And using decongestant nose spray or drops too often can cause a type of nonallergic rhinitis called rhinitis medicamentosa.

• Hormone changes. These can be due to pregnancy, periods or birth control use. Hormone problems that may trigger nonallergic rhinitis include a condition that happens when the thyroid gland doesn't make enough thyroid hormone. This is called hypothyroidism.
• Issues linked with sleep. Lying on your back while you sleep can trigger nonallergic rhinitis. Acid reflux that happens overnight also can be a trigger.

Risk factors

Things that can make you more likely to get nonallergic rhinitis include:

• Breathing in some types of unclean air. Smog, exhaust fumes and tobacco smoke are a few of the things that can raise the risk of nonallergic rhinitis.
• Being older than age 20. Most people who get nonallergic rhinitis are 20 or older. That makes it different from allergic rhinitis, which people often have when they're younger than 20.
• Using nose sprays or drops for a long time. Don't use store-bought decongestant drops or sprays oxymetazoline (Afrin, Dristan, others) for more than a few days. A stuffy nose or other symptoms might get worse when the decongestant wears off. This is often called rebound congestion.
• Getting pregnant or having periods. Congestion in the nose often gets worse during these times due to hormone changes.
• Being exposed to fumes at work. In some lines of work, fumes from supplies can cause nonallergic rhinitis to start. Some common triggers include construction materials and chemicals. Fumes from compost also can be a trigger.
• Some health problems. Some long-term health problems can cause nonallergic rhinitis or make it worse. These include diabetes and a problem that happens when the thyroid gland doesn't make enough thyroid hormone.

[tsranga]

Here are two more papers that go into more detail on the mechanism.. any medication that affects alpha2 adreno receptors (like mirtazapine) can trigger rhinitis. 

 

https://onlinelibrary.wiley.com/doi/full/10.1097/00005537-200011000-00012

 

https://www.termedia.pl/Autonomic-nervous-system-dysfunction-and-the-effect-r-nof-vitamin-D-level-in-vasomotor-rhinitis-patients,123,48486,1,1.html

 

 

[FeralCatman]

On a whim I Googled the term 'Iatrogenic Dysautonomia' and actually came up with something that I thought everybody would be interested in reading.

 

https://www.ncbi.nlm.nih.gov/books/NBK400/

 

This is a known term in the medical community but often overlooked and if you read this entire article you will see that pretty much every symptom everybody on this website is experiencing is described in this article. The good news is since PAWS / PWS is a secondary dysautonomia not a primary dysautonomia that once the offending agent is removed you will heal up. This article was written as a diagnostic guide for Physicians so if you are trying to seek this diagnosis this may be very helpful for you to print out and bring to your doctor. This may also be a useful diagnosis for PAWS / PWS  since it already exists as a diagnosis. I am going to try and find the ICD code for it. My primary care provider gave me the diagnosis of autonomic neuropathy which already has an ICD code. If needed this may be able to qualify you for disability if you have to go that route. More evidence that healing can and will happen 😉✌️😺😺

[FeralCatman]

Well that didn't take very long here are the billing codes for various forms of dysautonomia.

 

https://icd.codes/icd10cm/G90

 

Here's an article about dysautonomia and disability in the United States so if you need to go this route this might be an Avenue for you if you have a doctor that is amenable to it and will support you.

 

https://www.ssdrc.com/ssd-dysautonomia.html

[Tigz91]

Very interesting as I think this is what I'm struggling with.

[Addax]

My most persistent and WD symptom is orthostatic hypotension. It’s worse if I haven’t had made an effort to keep hydrated. It’s really such a regular occurrence that I don’t think to mention it most times.  I am prone to low sodium (also, likely, iatrogenic), so there is also that and its effect on my blood pressure.
 

Severe episodes will still freak me out, but mostly, as I mentioned, I’m pretty used to being wobbly upon standing. I’ve long suspected that the postural hypotension is likely related to Fluoxetine; or at least the increase in frequency and intensity of the episodes are related to my taper.

 

Edited July 30, 2023 by Addax

[Seaweedbrain]

Does blood pressure instability have to do withdrawal induced autonomic disfunction? I don’t personally struggle with bp as much as tachycardia in the mornings, usually accompanied with waves of anxiety. How much time does this usually take to stabilize? My issues with pins and needle sensations seem to have gone away a week ago

[Hope2001]

I am very severely impacted by dysautonomia and hyperadrenic pots. My bp is not on control. I am sensitive to all drugs, including bp drugs. 

[margaretLO]

On 10/8/2023 at 9:54 PM, Hope2001 said:

I am very severely impacted by dysautonomia and hyperadrenic pots. My bp is not on control. I am sensitive to all drugs, including bp drugs. 

I was severely impacted by dysautonomia too and still I am. I am severe case and got the reaction on Lexapro. Started with hyper pots when I get off then declined to some months after until started get better from then but I am far from normal It doesn't bother me xtreme anymore, maybe because got some better and I focus to cognitive issues 

[Ma205]

Has anyone started with symptoms of dysautonomia while ON AD’s? I started on them at 14. When I was 24 ish I started experiencing orthostatis, random tachycardia, always feeling like I needed to sit down, couldn’t stand in one place ect. Fast forward to now 32, after ct and reinstatement my dysautonomia symptoms continue to worsen.. I have almost fainted several times, if I stand in one place my legs turn purple and swell up, massive headaches on standing, tachycardia, dizziness, temp instability, cortisol and adrenaline rushes, the list goes on and on. I’m afraid I had an underlying dysautonomia that was potentially being treated by the ssri, or could this have been caused by toxic exposure to the drug itself? Idk if this is going to get exponentially worse as I taper down but as I’m tapering Ativan it’s deff worsening. To mention I also drank alcohol heavily while on ssris in my teens and early 20s so idk if I could have permanently damaged my nervous system through that.

[margaretLO]

1 hour ago, Ma205 said:

Has anyone started with symptoms of dysautonomia while ON AD’s? I started on them at 14. When I was 24 ish I started experiencing orthostatis, random tachycardia, always feeling like I needed to sit down, couldn’t stand in one place ect. Fast forward to now 32, after ct and reinstatement my dysautonomia symptoms continue to worsen.. I have almost fainted several times, if I stand in one place my legs turn purple and swell up, massive headaches on standing, tachycardia, dizziness, temp instability, cortisol and adrenaline rushes, the list goes on and on. I’m afraid I had an underlying dysautonomia that was potentially being treated by the ssri, or could this have been caused by toxic exposure to the drug itself? Idk if this is going to get exponentially worse as I taper down but as I’m tapering Ativan it’s deff worsening. To mention I also drank alcohol heavily while on ssris in my teens and early 20s so idk if I could have permanently damaged my nervous system through that.

Hello. I am sorry you are experience this. Yes me. I developed swallow issues and dysautonomia issues, orthostatic headaches on Lexapro together with many others symptoms. After I get off ct they worsen severely (maybe because CT too) purple swollen legs, orthostatic headaches , gravity issues, chest pain and more in 1 year off and since then they started get better. Now I am far from normal but at least they imporved to the point can do things but have to not stand much more than 30mins. I experience symptoms earlier than 30 mins many times 

[Ma205]

44 minutes ago, margaretLO said:

Hello. I am sorry you are experience this. Yes me. I developed swallow issues and dysautonomia issues, orthostatic headaches on Lexapro together with many others symptoms. After I get off ct they worsen severely (maybe because CT too) purple swollen legs, orthostatic headaches , gravity issues, chest pain and more in 1 year off and since then they started get better. Now I am far from normal but at least they imporved to the point can do things but have to not stand much more than 30mins. I experience symptoms earlier than 30 mins many times 

im so so sorry! How long were you on lexapro for and how old are you? Are you still off of medication?? Lastly, did you get anxiety and high heart rate after eating or standing? Sending healing wishes your way 🤍

[margaretLO]

39 minutes ago, Ma205 said:

im so so sorry! How long were you on lexapro for and how old are you? Are you still off of medication?? Lastly, did you get anxiety and high heart rate after eating or standing? Sending healing wishes your way 🤍

I was 7 years with two or three attempts get off. I am off now 1.5 year. I am 34years old. Yes I had the heart rate, now I don't have it anymore I feel or not intense. Healing vibes to you too... ❤️

[Ma205]

1 hour ago, margaretLO said:

I was 7 years with two or three attempts get off. I am off now 1.5 year. I am 34years old. Yes I had the heart rate, now I don't have it anymore I feel or not intense. Healing vibes to you too... ❤️

I’m 32! Reach out any time. 🤍

[margaretLO]

On 10/15/2023 at 11:23 PM, Ma205 said:

I’m 32! Reach out any time. 🤍

It came back for me, very bad again. Orthostatic hypotension and  many other symptoms. It didn't heal just I had A period It got little better but I didn't push myself to see. I was most of time not doing much 

[Hope2001]

Did you had window? I have understood that temperature can affect. Everything can affect. Food, stress. Are you working?

[margaretLO]

6 minutes ago, Hope2001 said:

Did you had window? I have understood that temperature can affect. Everything can affect. Food, stress. Are you working?

After I quit all side effects I had got worst. I almost had and have dementia symptoms. I csnt work bcs my cognition is very bad. 

[margaretLO]

I am an architect, I try help family office from home but is impossible. U? I didn't have window exactly, I had some days that I was walking and stand little more and I didn't die from fatigue too. I mean I hit zero and since then I got better 30oercent psychically. 

[Hope2001]

On 10/15/2023 at 6:49 PM, Ma205 said:

Has anyone started with symptoms of dysautonomia while ON AD’s? I started on them at 14. When I was 24 ish I started experiencing orthostatis, random tachycardia, always feeling like I needed to sit down, couldn’t stand in one place ect. Fast forward to now 32, after ct and reinstatement my dysautonomia symptoms continue to worsen.. I have almost fainted several times, if I stand in one place my legs turn purple and swell up, massive headaches on standing, tachycardia, dizziness, temp instability, cortisol and adrenaline rushes, the list goes on and on. I’m afraid I had an underlying dysautonomia that was potentially being treated by the ssri, or could this have been caused by toxic exposure to the drug itself? Idk if this is going to get exponentially worse as I taper down but as I’m tapering Ativan it’s deff worsening. To mention I also drank alcohol heavily while on ssris in my teens and early 20s so idk if I could have permanently damaged my nervous system through that.

You have pooling on your legs due to dysautonomia. What are you bp numbers?

 

 

[Viinncceennt]

Hi,

 

I'm new around here and I wanted to ask a specific question about dysautonomia. I've been kindly taking care of in my own thread, but I think it's better to ask this question here.

 

---------

 

I am oversimplifying, but it seems to me there are two kinds of "dysautonomia" : one which is permanent (the one Dysautonomia International advocates for) and one which is not (the iatrogenic kind we see in WD symptoms around here).

 

I read a lot about the first one on different subreddits (/dysautonomia and /pots) as well as websites (Dysautonomia International official website among others).

 

From what I read on DI website, the underlying causes are numerous since dysautonomia is an umbrella term, meaning it refers to any malfunction of the autonomic nervous system (ANS).

 

While reading numerous people experiences on Reddit, it appears that anything can trigger a dysautonomia : stress, viral infection, drugs, surgery... It can also be inborn and sometimes no cause can be found at all. It is also often stressed by people impacted by dysautonomia that its causes (and necessarily its cures) are still largely unknown or at least misunderstood by the medical and scientific world.

 

-------------------

 

What surprised me when I came around here and read about it, is that while dysautonomia is regarded here as a common symptom of WD and inherantly as a temporary one (even if healing can be very long), I haven't seen anything (I might be wrong here...) about WD triggering the onset of a permanent dysautonomia as well as dysautonomia being simply triggered by the initial intake of psy meds.

 

On the other hand, people with "traditional" dysautonomia stress on the fact that it is permanent (we can often read that only 5% recover and that it only concerns people who got it young). COVID long haulers brought a new light on dysautonomia and many of them recover as well (probably because it involves nerves inflammation). But besides those two categories, it's regarded as an uncurable illness.

 

----------

 

What can be misleading about those testimonies, is that most of the people who are talking about dysautonomia are talking about POTS. The second thing is true with every testimony, especially on anonymous social media : we don't know the back story and all the necessary details to draw perfect conclusion.

 

While keeping that in mind, I wanted to say that I searched all the testimonies I could find about dysautonomia being triggered by SSRI/SNRI, AP and benzos : I have found many, especially SSRI, but I haven't found one which healed from it.

 

This is terrifying news for me.

 

--------

 

As you may have read in my thread, I started to develop strong dysautonomia symptoms overnight at the hospital (late September), when my current medication had been totally switched. In less than 5 days I came back on my previous medication template. I had a brief switch in early November that I'm currently solving.

 

Some context : my nervous system was probably very fragile at that time. I had a viral infection the month before in early September (a small one if I believe doctors) and a UTI at the end of my hospital stay and got put on AB.

 

Is it realistic to believe that my symptoms are not permanent ? It came overnight and I didn't actually withdraw from my Lexapro (I had two days only without it). That very night and the night after, I was put on Risperidone and Cyamepomazine (two AP). The third night back on Lexapro, they put me on Olanzapine.

 

I have trouble believing they are not :

- as I said it came overnight out of the context of a tapering

- I was back on Lexapro 2 days later

- it's been 3 months and I haven't had a single window yet

- it's been 3 months and my symptoms are the same as the first day

 

3 years earlier, I had this exact same switch with no effect (same hospital, same Dr). Since late September and this event, I had a switch of BZ and of sleeping pills : I didn't feel a single WD symptoms.

 

---------------

 

My most optimistic take is that some symptoms are permanent and some others are not. My realistic take is that all are permanent (I haven't been able to live with them and if it doesn't get better and I loosen at one point, my parents will send me back there... which will be the end of me). My biggest selling point is that iatrogenic symptoms come and go as the ANS is trying to stabilize itself : one part is taking over (para or sympathetic) while the other is trying to infiltrate.

 

I'm not asking for medical views here but what's your take on my case regarding dysautonomia, as long-time helpers as well as sufferers ?

 

-----

 

I hope I didn't cross any line here, the admin which is taking care of me is wonderful and I didn't want to confound her/him at all.

 

Thanks.

 

Viinncceennt

[Ma205]

Does anyone here have underlying POTS or who has POTS induced by tapering? I’d love to connect. I’ve had POTS symptoms since a teen (now 32) however was completely functional. Now after ssri withdrawal, put on benzos and tapering off Ativan I am experiencing 

-extreme blood pooling in legs, inability to stand in one place without almost passing out, chest pain, shortness of breath, dizziness, dry everything, gastroparesis, and many other dysautonomia symptoms. 
 

would love to see what you are doing to try and manage this as it’s getting worse and worse as I taper down. 

[Altostrata]

Hello, @Ma205 Those symptoms sound like they could be adverse effects of the drugs you're currently taking.

[Hope2001]

2 hours ago, Ma205 said:

Does anyone here have underlying POTS or who has POTS induced by tapering? I’d love to connect. I’ve had POTS symptoms since a teen (now 32) however was completely functional. Now after ssri withdrawal, put on benzos and tapering off Ativan I am experiencing 

-extreme blood pooling in legs, inability to stand in one place without almost passing out, chest pain, shortness of breath, dizziness, dry everything, gastroparesis, and many other dysautonomia symptoms. 
 

would love to see what you are doing to try and manage this as it’s getting worse and worse as I taper down. 

Me. I am suffering dysautonomia and hyperadrenic pots. You can send me message if you want. I am in bad shape.

 

Did you got pots from tapering ssri or benzo? When your symptoms started?

[Viinncceennt]

3 hours ago, Ma205 said:

Does anyone here have underlying POTS or who has POTS induced by tapering? I’d love to connect. I’ve had POTS symptoms since a teen (now 32) however was completely functional. Now after ssri withdrawal, put on benzos and tapering off Ativan I am experiencing 

-extreme blood pooling in legs, inability to stand in one place without almost passing out, chest pain, shortness of breath, dizziness, dry everything, gastroparesis, and many other dysautonomia symptoms. 
 

would love to see what you are doing to try and manage this as it’s getting worse and worse as I taper down. 

Hi.

 

I've developped POTS and dysautonomia symptoms (I believe overnight from 1 dose of Risperidone + some other meds + high stress). I may have had blood pooling in the past but that's all. In the same time as POTS, I developped PSSD, akathisia...

 

POTS/dysautonomia : tachychardia, POTS (no issues with blood pressure), thermoregulation, blood pooling, shortness of breath... It's hard to say what's what's with akathisia, PSSD... I had gastroparesis the first few weeks but it's somehow better now (still pain in the stomach, slow digestion, BM issues...).

 

You can message me anytime for anything.

 

Good luck

[Ma205]

5 hours ago, Altostrata said:

Hello, @Ma205 Those symptoms sound like they could be adverse effects of the drugs you're currently taking.

@Altostrata I’ve had POTS since far before I started SSRIS. Now that Iv really been connecting the dots I had autonomic dysfunction since I was 9-10 likely brought on by a severe illness I had at the time. These got insanely worse when I stopped my ssri, stabilized and then significantly worsened when I decreased my ssri dose and as I’m tapering Ativan is worsening after every cut. 

[Ma205]

3 hours ago, Viinncceennt said:

Hi.

 

I've developped POTS and dysautonomia symptoms (I believe overnight from 1 dose of Risperidone + some other meds + high stress). I may have had blood pooling in the past but that's all. In the same time as POTS, I developped PSSD, akathisia...

 

POTS/dysautonomia : tachychardia, POTS (no issues with blood pressure), thermoregulation, blood pooling, shortness of breath... It's hard to say what's what's with akathisia, PSSD... I had gastroparesis the first few weeks but it's somehow better now (still pain in the stomach, slow digestion, BM issues...).

 

You can message me anytime for anything.

 

Good luck

 

4 hours ago, Hope2001 said:

Me. I am suffering dysautonomia and hyperadrenic pots. You can send me message if you want. I am in bad shape.

 

Did you got pots from tapering ssri or benzo? When your symptoms started?

PM sent! 

[Altostrata]

49 minutes ago, Ma205 said:

These got insanely worse when I stopped my ssri, stabilized and then significantly worsened when I decreased my ssri dose and as I’m tapering Ativan is worsening after every cut. 

 

You are tapering too fast. But we've been around this before.

[peaceandlove]

On 10/15/2023 at 8:49 AM, Ma205 said:

Has anyone started with symptoms of dysautonomia while ON AD’s? I started on them at 14. When I was 24 ish I started experiencing orthostatis, random tachycardia, always feeling like I needed to sit down, couldn’t stand in one place ect. Fast forward to now 32, after ct and reinstatement my dysautonomia symptoms continue to worsen.. I have almost fainted several times, if I stand in one place my legs turn purple and swell up, massive headaches on standing, tachycardia, dizziness, temp instability, cortisol and adrenaline rushes, the list goes on and on. I’m afraid I had an underlying dysautonomia that was potentially being treated by the ssri, or could this have been caused by toxic exposure to the drug itself? Idk if this is going to get exponentially worse as I taper down but as I’m tapering Ativan it’s deff worsening. To mention I also drank alcohol heavily while on ssris in my teens and early 20s so idk if I could have permanently damaged my nervous system through that.

Are you still having this symptom? @Ma205

[peaceandlove]

On 1/2/2024 at 1:49 PM, Viinncceennt said:

Hi.

 

I've developped POTS and dysautonomia symptoms (I believe overnight from 1 dose of Risperidone + some other meds + high stress). I may have had blood pooling in the past but that's all. In the same time as POTS, I developped PSSD, akathisia...

 

POTS/dysautonomia : tachychardia, POTS (no issues with blood pressure), thermoregulation, blood pooling, shortness of breath... It's hard to say what's what's with akathisia, PSSD... I had gastroparesis the first few weeks but it's somehow better now (still pain in the stomach, slow digestion, BM issues...).

 

You can message me anytime for anything.

 

Good luck

I am going through the exact same issues please help 😩 it seems all I can do is lay in bed or else my heart rate goes crazy. I also have the temperature problems, tingling in legs etc @Viinncceennt

[peaceandlove]

On 5/18/2021 at 3:16 PM, Eastcoastgirl said:

Maybe my case of Dysautonomia is really bad (hypotension and POTS) but I don’t find an exercise program does anything for it. Avoiding deconditioning is important but for most people I think time is the only thing that can fully heal iatrogenic dysautonomia. The idea that people with POTS just need to exercise their way back to health has always been strange to me anyway because many people are quite active prior to diagnosis.

 

this! I have pots & im confused on whether to rest or do a light walk?

[peaceandlove]

I am confused going forward until my cardio appointment. I raised my bed, I’m sleeping on a reflex pillow, wearing compression socks all the things they say for POTS.
 

They also say to do light exercise I’m confused if I should do that or rest?

[margaretLO]

2 hours ago, peaceandlove said:

I am confused going forward until my cardio appointment. I raised my bed, I’m sleeping on a reflex pillow, wearing compression socks all the things they say for POTS.
 

They also say to do light exercise I’m confused if I should do that or rest?

I got diagnosed with dysautonomia too. For pots light exercise is helping BUT if you have fatigue or similar symptoms like chronic fatigue syndrome.. Exercise can lead to further crashes. They explained me in long covid clinic. (I went there bcs I needed the diagnoses) and I was gaslighted until then from regular doctors