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

[peaceandlove]

17 minutes ago, margaretLO said:

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 

Thank you I do feel tired but then again who wouldn’t after dealing with all of this. Think I’m just going to rest & lay down for now. Months ago when I exercised I definitely did crash afterwards. Does your POTS symptoms come and go??  @margaretLO

[margaretLO]

Just now, peaceandlove said:

Thank you I do feel tired but then again who wouldn’t after dealing with all of this. Think I’m just going to rest & lay down for now. Months ago when I exercised I definitely did crash afterwards. Does your POTS symptoms come and go??  @margaretLO

I rest bcs I have cfs for sure. I understood this because after exercise even light my symptoms are worst for long time.. Is good to do light walking but light exercise is too much if u experience fatigue.... I got way way worst from trying walk much.... I have it constantly. Unfortunately bcs the level is too much but I have some periods that the symptoms are little less. Urs? 

[margaretLO]

2 minutes ago, margaretLO said:

I rest bcs I have cfs for sure. I understood this because after exercise even light my symptoms are worst for long time.. Is good to do light walking but light exercise is too much if u experience fatigue.... I got way way worst from trying walk much.... I have it constantly. Unfortunately bcs the level is too much but I have some periods that the symptoms are little less. Urs? 

Ofc the severity of this depends... The levels are a lot. It can be from fuctional level and mild fatigue to severe cfs and bedridden.  For me i rest most of the time and do little walk some days bcs I don't wsnt to get even worst bcs the level is too much for me

 

Post-exertional malaise (PEM) Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. PEM can be mitigated by activity management (pacing).

 

 

[peaceandlove]

1 minute ago, margaretLO said:

I rest bcs I have cfs for sure. I understood this because after exercise even light my symptoms are worst for long time.. Is good to do light walking but light exercise is too much if u experience fatigue.... I got way way worst from trying walk much.... I have it constantly. Unfortunately bcs the level is too much but I have some periods that the symptoms are little less. Urs? 

ugh I’m sorry your dealing with this. Yes last year on vacation I could handle about 2 days of walking then I had to stay back in bed because I was just so tired & out of it. Tbh my nervous system felt out of it once I got covid in 2020 I had all these weird symptoms then developed anxiety all of a sudden. I took the anxiety pill to regulate my nerves system but I had an adverse reaction. I didn’t I notice there pots symptoms that much until about a month ago.
 

Do you take beta blockers for this ??

im scared I will react to them. As I’m so sensitive to noise, smells, light etc @margaretLO

[margaretLO]

5 minutes ago, peaceandlove said:

ugh I’m sorry your dealing with this. Yes last year on vacation I could handle about 2 days of walking then I had to stay back in bed because I was just so tired & out of it. Tbh my nervous system felt out of it once I got covid in 2020 I had all these weird symptoms then developed anxiety all of a sudden. I took the anxiety pill to regulate my nerves system but I had an adverse reaction. I didn’t I notice there pots symptoms that much until about a month ago.
 

Do you take beta blockers for this ??

im scared I will react to them. As I’m so sensitive to noise, smells, light etc @margaretLO

I am sorry u dealing with this too. Very unfair have issues from a pill for God sake!

 

No no, I don't take any meds any more. I saw beta blockers mostly need cyp2d6 enzyme, the one I lack and got toxicity from lexapro. I don't like meds anymore.. U? 

[peaceandlove]

11 minutes ago, margaretLO said:

I am sorry u dealing with this too. Very unfair have issues from a pill for God sake!

 

No no, I don't take any meds any more. I saw beta blockers mostly need cyp2d6 enzyme, the one I lack and got toxicity from lexapro. I don't like meds anymore.. U? 

Ohh interesting I’ve never heard of the cyp2d6 enzyme thank you for telling me. No I don’t take any pills as you can only imagine I’m very scared to & don’t trust pills at all. Honestly my never out system seemed out it once I got covid but I was still able to live life, once I took the pill I’m not able to do anything now.

 

Do you have any other symptoms?? For example I have the need to urinate all the time but no infection @margaretLO

[margaretLO]

4 minutes ago, peaceandlove said:

Ohh interesting I’ve never heard of the cyp2d6 enzyme thank you for telling me. No I don’t take any pills as you can only imagine I’m very scared to & don’t trust pills at all. Honestly my never out system seemed out it once I got covid but I was still able to live life, once I took the pill I’m not able to do anything now.

 

Do you have any other symptoms?? For example I have the need to urinate all the time but no infection @margaretLO

A lot in general. Anhedonia cognitive dysfuction... But u may ask for dysautonomia specific?? Yes, I have swallow issues that comes and goes. But even in the 'window time' very dry food, I cant swallow then good. Cold intolerance, purple nails in cold, fatigue, blood pooling.....u?  I got either adverse reaction with fatigue and dysautonomia five days before I quit lexapro, five days before covid(so its not covid, but I had bad luck) and three days after third.vaccine. 

[peaceandlove]

51 minutes ago, margaretLO said:

A lot in general. Anhedonia cognitive dysfuction... But u may ask for dysautonomia specific?? Yes, I have swallow issues that comes and goes. But even in the 'window time' very dry food, I cant swallow then good. Cold intolerance, purple nails in cold, fatigue, blood pooling.....u?  I got either adverse reaction with fatigue and dysautonomia five days before I quit lexapro, five days before covid(so its not covid, but I had bad luck) and three days after third.vaccine. 

i have waves of anxiety, depression, intrusive thoughts that aren’t mine obessive thoughts, this heart stuff, frequent urinating.feels like I got hit by a car, muscle pain/tension, head pressure, ear pressure, random shottting pain, fear, paranoia,

hard to talk sometimes like getting words out, intrusive memories, etc. Do you get the anxiety & mental stuff?

 

I too have cold intolerance it seems like I get flashes of hot & cold. My hands & feet get cold, Is this what you get? @margaretLO

Hhm interesting I did feel weird after I got my covid vaccine as well. And all my other family members didn’t have the same reaction as me.

[margaretLO]

9 minutes ago, peaceandlove said:

i have waves of anxiety, depression, intrusive thoughts that aren’t mine obessive thoughts, this heart stuff, frequent urinating.feels like I got hit by a car, muscle pain/tension, head pressure, ear pressure, random shottting pain, fear, paranoia,

hard to talk sometimes like getting words out, intrusive memories, etc. Do you get the anxiety & mental stuff?

 

I too have cold intolerance it seems like I get flashes of hot & cold. My hands & feet get cold, Is this what you get? @margaretLO

Hhm interesting I did feel weird after I got my covid vaccine as well. And all my other family members didn’t have the same reaction as me.

Sounds bad.. I am sorry... I had them in my first attempts get off lexapro and I was stupid and reistated.. Now I am more sick but I don't feel anxiety at all.. I think is because I have severe  anhedonia.. Now I had ocd yes like withdraws but gone like 1.5 year off. 

[peaceandlove]

18 minutes ago, margaretLO said:

Sounds bad.. I am sorry... I had them in my first attempts get off lexapro and I was stupid and reistated.. Now I am more sick but I don't feel anxiety at all.. I think is because I have severe  anhedonia.. Now I had ocd yes like withdraws but gone like 1.5 year off. 

Wait so are you all off drugs? & how long have you been off? @margaretLO

[margaretLO]

On 2/25/2024 at 7:00 PM, peaceandlove said:

Wait so are you all off drugs? & how long have you been off? @margaretLO

Yes.. 2 years

[Farm24]

On 6/14/2015 at 11:03 AM, vonant said:

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. 

.

• Excessive fatigue
• Excessive thirst (polydipsia)
• Lightheadedness or dizziness, often associated with orthostatic hypotension (abnormally low blood pressure on standing), sometimes resulting in syncope (fainting)
• Rapid heart rate or slow heart rate
• Blood pressure fluctuations
• Difficulty with breathing or swallowing
• Shortness of breath with activity or exercise
• Distension of the abdomen
• Mydriasis (abnormal dilation of the pupils) leading to blurry vision
• Urinary incontinence or neurogenic bladder dysfunction
• Gastroparesis (delayed gastric emptying) with associated nausea, acid reflux and vomiting
• Constipation
• Excessive sweating or lack of sweating (anhydrosis)
• Heat intolerance brought on with activity and exercise
• Sexual problems including erectile dysfunction in men and vaginal dryness and orgasmic difficulties in women

 

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.

Man. I have the lack of sweating and it is a killer when you are hot.  I can never cool down

[tsranga]

I have had most of the symptoms on and off throughout my withdrawal since either stopped mirtazapine cold turkey 5 years ago. 

 

Some of the symptoms have gone away, most are less intense and don't last as long, so since last year, I finally have reached a point where I am more confident that I am getting better over time. 

 

In general, the issue with us is that our sympathetic and parasympathetic nervous system (part of the autonomic nervous system) do not function well and they have a tendency to overcompensate or under compensate when adapting to changes (usually posture related changes, changes in barometric pressure and temperature). The more drastic the change, the more time it takes for the body  to stabilize.

 

This month has been bad as we have had more variations in temperature and barometric pressure. Almost all my symptoms originate from an erratic GI tract and its ability to eliminate gas and stools, and it also affects urination.  I have learned to reduce the duration of symptoms by physically alternating my body position and practicing 4-6-8 breathing to trigger movement.  It takes typically around 30 minutes on most days, but troublesome days like this week, it can take 3-4 hours.  Once it stabilizes, all other symptoms subsides and I can get some sleep/rest.

 

Make sure you are hydrating well with electrolytes - at least half your body weight in ounces with magnesium, potassium, sodium and calcium in the right proportion.  This is very important to avoid blood pooling and retaining fluids. If you don't, then we can experience abdominal/pelvic blood pooling which reduces circulation to the extremities (hands, feet and neck/shoulders/head) causing other symptoms.

[Farm24]

2 minutes ago, tsranga said:

I have had most of the symptoms on and off throughout my withdrawal since either stopped mirtazapine cold turkey 5 years ago. 

 

Some of the symptoms have gone away, most are less intense and don't last as long, so since last year, I finally have reached a point where I am more confident that I am getting better over time. 

 

In general, the issue with us is that our sympathetic and parasympathetic nervous system (part of the autonomic nervous system) do not function well and they have a tendency to overcompensate or under compensate when adapting to changes (usually posture related changes, changes in barometric pressure and temperature). The more drastic the change, the more time it takes for the body  to stabilize.

 

This month has been bad as we have had more variations in temperature and barometric pressure. Almost all my symptoms originate from an erratic GI tract and its ability to eliminate gas and stools, and it also affects urination.  I have learned to reduce the duration of symptoms by physically alternating my body position and practicing 4-6-8 breathing to trigger movement.  It takes typically around 30 minutes on most days, but troublesome days like this week, it can take 3-4 hours.  Once it stabilizes, all other symptoms subsides and I can get some sleep/rest.

 

Make sure you are hydrating well with electrolytes - at least half your body weight in ounces with magnesium, potassium, sodium and calcium in the right proportion.  This is very important to avoid blood pooling and retaining fluids. If you don't, then we can experience abdominal/pelvic blood pooling which reduces circulation to the extremities (hands, feet and neck/shoulders/head) causing other symptoms.

Thank you. I have days where I feel ALMOST normal. Like today. Then tomorrow the heavy body feeling comes back, followed by extreme muscle contraction a day or so later. Did you experience any muscle issues?  

 

I did also have clear urine since I started Lexapro. I finally have color to it again.  I could go 24 hours without drinking and it would be crystal clear. Whatever pigment that was, wasn't getting into the urine or wasn't working well.  

 

Did you have days where you felt well in the beginning?  I find walking helps. Magnesium made the heavy body feeling a million times worse. So I wonder if my muscles are over relaxed during that time.  Feels like I took a muscle relaxer. 

 

I had veins that popped from skin. That seem to resolve. My BP had gotten almost normal. It was running so low.  But i took it today again and it is so low.  I also have dry eye, ear, nose and mouth.  No I just seem to have dry eye and ear and ear fullness.  

 

The muscle tension and heavy body feeling are the most dehabilitating though.  It's exhausting. I'm not sure which is worse.  

[tsranga]

12 minutes ago, Farm24 said:

Thank you. I have days where I feel ALMOST normal. Like today. Then tomorrow the heavy body feeling comes back, followed by extreme muscle contraction a day or so later. Did you experience any muscle issues?  

Yes.. in general I find that when it's colder everything is held better in place. When it's warmer, I feel loose and can't feel or control my muscles and it usually hurts when I get up from rest. If there is too much variation between daytime and night temperature (over 25 deg), it is worse, but if temp stays in a narrow range, I don't have the pain. 

 

In general, my symptoms are at its most severe when I first wakeup and mostly normal in the evening after 6.  

 

 

[Farm24]

3 minutes ago, tsranga said:

Yes.. in general I find that when it's colder everything is held better in place. When it's warmer, I feel loose and can't feel or control my muscles and it usually hurts when I get up from rest. If there is too much variation between daytime and night temperature (over 25 deg), it is worse, but if temp stays in a narrow range, I don't have the pain. 

 

In general, my symptoms are at its most severe when I first wakeup and mostly normal in the evening after 6.  

 

 

That makes sense. But dang. You are still having those muscle issues? It's so dehabilitating.  

[tsranga]

14 minutes ago, Farm24 said:

You are still having those muscle issues? It's so dehabilitating.  

 

It's not as much and it usually happens in the morning when there's too much variation in temperature.

 

Btw do you have sciatic nerve / piriformis syndrome or hypermobility?  It could be related to that 

 

 

[Farm24]

Just now, tsranga said:

 

It's not as much and it usually happens in the morning when there's too much variation in temperature.

I do notice most of my symptoms changes come on in the night. I guess from so much time not moving

[Farm24]

3 minutes ago, tsranga said:

 

It's not as much and it usually happens in the morning when there's too much variation in temperature.

 

Btw do you have sciatic nerve / piriformis syndrome or hypermobility?  It could be related to that 

 

 

I don't have any of those.  I was actually perfectly healthy and had no issues before this.  But this hasn't made me hypermobile

[peaceandlove]

On 7/30/2023 at 1:43 PM, Addax said:

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.

 

Has this gone away for you yet? @Addax I’m going through the same 

[peaceandlove]

On 5/10/2022 at 5:47 AM, Eastcoastgirl said:

If you have dysautonomia you will have blood pressure and heart rate irregularities. Usually sustained tachycardia while standing and sometimes hypotension or hypertension. Blood pooling in the legs is often involved too. If you don’t have any of these things it is not Dysautonomia. You can look up the criteria for diagnosis online. I thought my Dysautonomia would go away because it started from withdrawal but after having it for 3.5 years I decided to seek a diagnosis. Be aware that it can often take years and many doctors before you find someone who will test and diagnose you. Also be aware that a lot of the medications that are used to treat it can have a negative affect on people who are in withdrawal. 

Has this issue of pots gone away for you yet? @Eastcoastgirl I’m going through the same