Flares - adrenaline, histamine or just poor thermoregulation?

[Ranga]

For the last four years I have been dealing with different symptom patterns that cause sleep issues, and sometimes a sleepless night, and I haven't been able to figure out if it's an adrenaline rush or histamine dump, or just poor thermoregulation.

 

Last night I had a flare after almost 3 months. I usually have no warning of a flare until I get to sleep. But the pattern is always kicked off by some variation of gut symptoms - heartburn, reflux, excess/stuck gas, multiple BMs, or an overactive gut with a lot of gut noises. Sometimes this can be accompanied by sinus issue, thermoregulation issues or leg paresthesia/pain

I have consistently seen a correlation between the gut symptoms and thermoregulation - if I am bloated and burping or reflux, I am in a warming cycle, and if I am having gas and BMs then I am in a cooling cycle. Of course in a flare, this could go on all night.

Last night, it started off feeling light headed and disoriented, which got better after massaging my shoulders/neck (normal BP 110/80). Then I started feeling both sweaty and cold with shivering, with a lot of good gut noises.. which then progressed to multiple peeing episodes, BMs, and needing to drink a lot of water.. and some calf cramps. It may be just dehydration, as sometimes due to my slow gut, I am unable to drink enough until the evening, and it just stays in the stomach, until I lie down to sleep.

The following day, I am more sensitive to both heat and cold and have difficulty with thermoregulation with more leg parasthesia, and have visceral sensitivity.

I went through most of winter without a flare, until the last two days where we have had the temperatures hit 68, and yesterday I sat under direct sunlight for about 30 minutes. I was perfectly fine with that and also being in AC through the day, but when I lay down at night, I had itchy skin all over almost like the body wanted to sweat but couldn't.

I know that I also have poor/delayed thermoregulation - eg. If I am exposed to heat during the day, I may sweat at night or the following morning when it's cold. Also, I need more exercise and humidity in winter or more heat in summer to sweat, but my body takes a while to adapt to the change of season, and it does worse when the daily lows and highs keep fluctuating by more than 10 deg.

Does anyone have a similar pattern? Have you been able to identify a trigger? And has anything helped to reduce the symptoms?

[beccaj10]

On 1/27/2023 at 1:57 PM, Ranga said:

For the last four years I have been dealing with different symptom patterns that cause sleep issues, and sometimes a sleepless night, and I haven't been able to figure out if it's an adrenaline rush or histamine dump, or just poor thermoregulation.

 

Last night I had a flare after almost 3 months. I usually have no warning of a flare until I get to sleep. But the pattern is always kicked off by some variation of gut symptoms - heartburn, reflux, excess/stuck gas, multiple BMs, or an overactive gut with a lot of gut noises. Sometimes this can be accompanied by sinus issue, thermoregulation issues or leg paresthesia/pain

I have consistently seen a correlation between the gut symptoms and thermoregulation - if I am bloated and burping or reflux, I am in a warming cycle, and if I am having gas and BMs then I am in a cooling cycle. Of course in a flare, this could go on all night.

Last night, it started off feeling light headed and disoriented, which got better after massaging my shoulders/neck (normal BP 110/80). Then I started feeling both sweaty and cold with shivering, with a lot of good gut noises.. which then progressed to multiple peeing episodes, BMs, and needing to drink a lot of water.. and some calf cramps. It may be just dehydration, as sometimes due to my slow gut, I am unable to drink enough until the evening, and it just stays in the stomach, until I lie down to sleep.

The following day, I am more sensitive to both heat and cold and have difficulty with thermoregulation with more leg parasthesia, and have visceral sensitivity.

I went through most of winter without a flare, until the last two days where we have had the temperatures hit 68, and yesterday I sat under direct sunlight for about 30 minutes. I was perfectly fine with that and also being in AC through the day, but when I lay down at night, I had itchy skin all over almost like the body wanted to sweat but couldn't.

I know that I also have poor/delayed thermoregulation - eg. If I am exposed to heat during the day, I may sweat at night or the following morning when it's cold. Also, I need more exercise and humidity in winter or more heat in summer to sweat, but my body takes a while to adapt to the change of season, and it does worse when the daily lows and highs keep fluctuating by more than 10 deg.

Does anyone have a similar pattern? Have you been able to identify a trigger? And has anything helped to reduce the symptoms?

I have a flare with every change of the seasons that usually last 3-4 months. I belong to Facebook and can go back in my memories for the year on this day.. and it blows my mind.. every year almost to the day I will get at least a week long migraine, sweats , chills, exasperated GI, more aches. But, during this four or so flare it can happen multiple times. Usually during this time I will have increased swelling in my lower legs, fatigue, extra sensitivity, inability to deal with ambient temperature, sleeplessness, my pain receptors will likely be more exaggerated. It usually happens october/November thru jan/Feb. depending on how fast & cold the winter comes in. Then I always get it around April-June/July, again depending on when the summer heat comes in. I live in massachusets so our weather varies.

 I have lived with dysautonomia my whole life and have not been able to eat since age 15, so I have other complicated medical problems. I don’t currently have a neurologist or anyone who follows my dysautonomia so I just deal with it. I get all my nutrition and IV fluid by IV form for the last 30 years so when my blood pressure is having issues I can bolus in fluid. 
The last week has been really rough.. the older I get the harder time I am having dealing with the symptoms. My body just doesn’t fight it as well.
 

Do you ever get mood swings highly emotional with the dysautonomia flares? This is new and also blurred vision especially outside with the sun- I just put two and two together and figured it is related to the dysautonomia. 
   The itchiness that you get, is it short lived? I have been having severe itchiness mostly at night for the last two weeks in my legs- cannot figure out why. I never thought it could be the dysautonomia. 

thanks- Becca
 

 

[Ranga]

10 hours ago, beccaj10 said:

Do you ever get mood swings highly emotional with the dysautonomia flares? This is new and also blurred vision especially outside with the sun- I just put two and two together and figured it is related to the dysautonomia. 
   The itchiness that you get, is it short lived? I have been having severe itchiness mostly at night for the last two weeks in my legs- cannot figure out why. I never thought it could be the dysautonomia. 

Yes.. I get hypervigilant, more emotional and can get into a fight flight mode very quickly in a flare. Blurry vision is usually indoors when I am walking around after food, but it has improved.  Itchiness can happen when there is a drastic change into warm weather, along with leg parasthesia. I think all of this is related to blood circulation. Not that there are issues with blood vessels , but the communication between the nervous system and vascular system seems to be poor.