The problem with treating POTS triggered by drastic weather changes

[Ranga]

So if we assume to that the condition is due to a faulty functioning of the nervous system in regulating blood pressure/vasoconstriction/vasodilation,  isn't it challenging to find a treatment that precisely knows when to  vasodilate when to vasoconstrict?  

In my personal experience, I find that  drastic weather changes makes it very hard to manage this condition 

For example, I know that cold air/weather constricts my blood vessels and reduces blood flow to the legs and increases my BP

However, when the ambient air is  predominantly warm, symptoms are more manageable. 

 Bay area weather has cold mornings and evenings with a 20-40 deg variation, and climate change has introduced heat waves followed by cold fronts to the mix. This means that indoors and outdoor environments vary greatly, although I find outdoors a lot more comfortable (unless it's a cold windy summer day). 

Add to that, our bodies have a circadian rhythm of cooling and heating. My circulation is at its best in the evenings. 

How does everyone manage without putting ourselves in a bubble  ?  

 

 

[MikeO]

16 hours ago, Ranga said:

So if we assume to that the condition is due to a faulty functioning of the nervous system in regulating blood pressure/vasoconstriction/vasodilation,  isn't it challenging to find a treatment that precisely knows when to  vasodilate when to vasoconstrict?  

In my personal experience, I find that  drastic weather changes makes it very hard to manage this condition 

For example, I know that cold air/weather constricts my blood vessels and reduces blood flow to the legs and increases my BP

However, when the ambient air is  predominantly warm, symptoms are more manageable. 

 Bay area weather has cold mornings and evenings with a 20-40 deg variation, and climate change has introduced heat waves followed by cold fronts to the mix. This means that indoors and outdoor environments vary greatly, although I find outdoors a lot more comfortable (unless it's a cold windy summer day). 

Add to that, our bodies have a circadian rhythm of cooling and heating. My circulation is at its best in the evenings. 

How does everyone manage without putting ourselves in a bubble  ?  

 

 

It would be nice to have a smart drug or very short lived (half life) drug that knows when to vasodilate or vasoconstrict but i can't see that happening. I have seen nitro patches or Clonidine patch (Clonidine is nasty IMO) used to treat supine hypertension but i am pretty sure these drugs are not used as goto POTS treatments.

 In healthy folks blood pressures will follow a Circadian cycle. So bp's will go thru a morning rise (spike) and then become lower in the evening hours and then will go thru a dip (while sleeping) challenge for folks with Dysautonomia is the normal bp swings don't always happen the way they should (at least for me) along with all the other blood pressure related symptoms. Best i have been able to do is to find a middle ground with my drug therapy that i can live with (took me quite a while to find the right drug cocktail that i can tolerate)

Weather does affect me as well especially during the big changes in the seasons (late spring and late fall will cause flare ups for me) but i will eventually adjust. I have read of some folks using a cooling jacket during warm days. might be something to try.

[MTRJ75]

The best hope would be to find a way that corrects the malfunction and stops the wrong signals from going out in the first place. 

[MikeO]

4 hours ago, MTRJ75 said:

The best hope would be to find a way that corrects the malfunction and stops the wrong signals from going out in the first place. 

good luck....

[Ranga]

On 9/17/2022 at 7:53 AM, MikeO said:

challenge for folks with Dysautonomia is the normal bp swings don't always happen the way they should (at least for me) along with all the other blood pressure related symptoms. Best i have been able to do is to find a middle ground with my drug therapy that i can live with (took me quite a while to find the right drug cocktail that i can tolerate)

Weather does affect me as well especially during the big changes in the seasons (late spring and late fall will cause flare ups for me) but i will eventually adjust. I have read of some folks using a cooling jacket during warm days. might be something to try.

You are so right..   Fortunately, I haven't had too many low BP episodes. My issue appears to be mainly when my BP spikes up in trying to regulate temperature and pressure. It almost always happens when I am falling asleep or waking up and triggers fight/flight, which as you pointed out, has a circadian rhythm component. I also have trouble with international travel.  The more variation between heat/cold/pressure on the day, the more likely that  I will have an issue.   Higher BP translates to the body struggling to get to homeostasis - regulating temperature and pressure in the head, abdomen and legs.  For me, it causes reflux/burping and heating up, leg paresthesia, stuffy/blocked sinuses, followed by chills, gas, and BMs.  It most often hits during the early afternoon or when falling asleep (basically at rest).  As long as I keep moving, things are manageable.

We had a week long heat wave in 110s, followed by a cold front ending in rains yesterday. In fact, yesterday I was feeling great outdoors even with a cold front and then it hit me when I lay down to sleep. I could sense that my feet weren't warm enough, so I quickly put them inwarm water, and all my burps released, I warmed up and was able to fall asleep.  I suspect there are temperature sensors in the abdomen as well that aren't firing well - it appears that the more you cover up, the harder it is for the body to regulate itself.  Also,  there may also be a CNS (hypothalamus) component to this, as I have issues when falling asleep or in REM sleep, which is when body temperature regulation is poor. 

The thing is I can handle the same or worse temperature when I am outdoors  without issues, so it is quite frustrating not to be able to deal with it when resting indoors, and it appears that medication doesn't help too much other than trying to dampen your nerves enough to sleep.

 

[Pistol]

@Ranga - although I do not experience ALL of your symptoms I do respond extremely to changes in temperature, mostly in response to barometric pressure changes. for example - one year we drove 7 hours from my mountain home to the ocean. I did fine while seated in the airconditioned car but as soon as I got out at the beach I flared ( dizziness, tachycardia, increased BP, fatigue, tremors, cold hand and feet, chest pain ) and could barely make it into the hotel. I had to rest the rest of the week inside and could only walk a bit early am or after sunset. After researching this I found it is directly related to the change in barometric pressure. 

I too respond like tis when the weather changes, a cold front drives in or the season change. for the past 3 years I would suffer from low BP during the summer months and higher BP and cold limbs in the cooler months. With permission of my cardiologist I have been adjusting my calcium channel blocker ( Diltiazem ) from 180 mg in summer to 240 mg in winter. this month - September - is the month I already am seeing an increase in BP, fatigue and Raynaud syndrome, so I am increasing the med as of today. Sometimes that will result in a few days of hypotension but eventually balances out. 

[MikeO]

3 hours ago, Pistol said:

September - is the month I already am seeing an increase in BP

I am already seeing an increase in bp's as well this month as well. night have been colder when sleeping so my morning pressures have been noticeably higher

[Ranga]

5 hours ago, Pistol said:

too respond like tis when the weather changes, a cold front drives in or the season change. for the past 3 years I would suffer from low BP during the summer months and higher BP and cold limbs in the cooler months. W

My issue is that there is no consistency in symptoms, and it doesn't matter whether it's summer or winter. It's all about the relative change in temperature or pressure. I do generally well in warmth, including indoor ambient air, and I can handle extreme heat comfortably, but not a sudden/drastic change. It is a lot harder for me to warm up, and it needs to be a smoother / gradual change. 

Where I live in the bay area, we have a wide daily range in temperature and can also have pressure drops in the afternoons when it heats up. 

Some nights, I will have all normal vitals as I lie down to sleep, but I will wake up with a cold or heat surge, which most often means increase in BP, and then it typically takes hours of burping, gas or BMs to stabilize. I rarely have low BP, and it doesn't affect me as much.

The symptoms are pretty consistent in the body -

- sinus pressure ( blocked sinuses, stuffy nose)

- gut/abdominal pressure (burping, reflux, gut noises, gas, BMs)

- leg pressure (paresthesia, stiffness, heat/cold)

And it happens when I am experiencing both heat (sun) and cold (wind), and when then there is a drastic shift in temperature/pressure between environments, and most likely, when there is a postural change (lying down) and my brain is unable to regulate temperature (eg. in REM sleep).

In fact, two days ago, we had the rains at the end of a cold front, and I was feeling perfect when I was outdoors (didn't even need a jacket), but as soon the sun came out and I was in the car, my sinus, gut and legs started acting up).  It takes 15-20 min to settle down. At night, I was symptom free, and it was cold, and I covered up and as I was feeling asleep, I had a heat surge with reflux burps - that means high BP, warmer upper body and less blood to my feet. 

This time, I conducted an experiment since I knew a warm shower regulates my body.. I soaked my feet in warm water for 5 minutes, and I released a whole lot of burps that settled my gut pressure and warmed my feet, and I could fall asleep immediately with one less covering. 

In fact, anything that changes pressure in the body, like BMs, changes temperature of the body. If I feel warm, after a BM, I feel cold, and vice versa. Burping and gas are other ways that the body regulates temperature.

This is the reason why I shy away from medicating, as my body is able to settle down with simple interventions most of the time, but I can't do much to regulate the changes in environment.

 

 

 

[Ranga]

BTW I just checked my BP before and after cold exposure, before after exercise and cool down.

-115/84/79 after wakeup indoors,

- 133/89/72 cold exposure outdoors . 

-119/83/102 Exercise

-111/77/85 post exercise cool down

It is weird that HR seems to drop with increasing BP. Have any of you noticed this ?  

Also, I rarely have a shiver response to cold, and sweating when it's cold is uneven. Wonder what role that is playing.

 

 

[MikeO]

2 hours ago, Ranga said:

BTW I just checked my BP before and after cold exposure, before after exercise and cool down.

-115/84/79 after wakeup indoors,

- 133/89/72 cold exposure outdoors . 

-119/83/102 Exercise

-111/77/85 post exercise cool down

It is weird that HR seems to drop with increasing BP. Have any of you noticed this ?  

Also, I rarely have a shiver response to cold, and sweating when it's cold is uneven. Wonder what role that is playing.

 

 

To be honest your vitals look good. I would not put a lot of concern as to the lower HR's with the higher BP's IMO just means your heart is not working as hard to maintain orthostasis. Reading back as to some of your symptoms i am just wondering if what you are eating is giving some grief? Food can be a stressor with Dysautonomic folks. 

[Ranga]

2 hours ago, MikeO said:

Reading back as to some of your symptoms i am just wondering if what you are eating is giving some grief? Food can be a stressor with Dysautonomic folks. 

I went through multiple experiments and figured there was no food trigger.  I do avoid gluten and dairy, and alcohol.  I found caffiene helps me regulate my temperature better and I feel less symptomatic overall. 

And yes, my vitals are for the most part not something to be concerned about, although my resting HR during sleep is a whole another beast..   As I said, I rarely have issues when I am up and about - mostly at rest/sleep.

The HR dip at sleep onset was when I was feeling cold and high BP.  It can also flip the other way i.e. high at sleep onset and low when waking up. The other graph is typically my normal. I still wakeup to a sharp spike (even when I am am just lying down) and it's usually when there is abdominal pressure to pee/gas. 

 

[MikeO]

Hr rates look pretty good to me. And has not even gone into the tachycardia range. If you are not sure i would speak to a Cardiologist to be on the safe side. I do at times catch a 95 bpm hr in the morning. Having to pee i know will affect blood pressure but i have never looked into how it affects ones heart rate.