What is flare

[Teodor]

I see a lot of people here use the word "flare", what do you mean by that?

[Pistol]

Hello @Teodor - what we generally mean by a "POTS flare" is when our symptoms are becoming suddenly much worse, normally following one of many triggers ( illness, weather changes, stress, injury, diet changes or changes in hydration, too much or too little activity ... ). For example - one might become bedridden, unable to get up without fainting or severe symptoms of tachycardia, BP changes etc. We often are extremely fatigued but cannot sleep, we may be too nauseated to eat or drink, we sometimes cannot even walk to the bathroom. Of course not everybody's flare has to go to that extreme - some simply are too tired to work and return to severe symptoms despite the normally effective medications. 

So - in other words, if you see a sudden peak in your POTS symptoms it is probably what we refer to as a flare. Most POTS symptoms come and go, and there are times when we feel good and times when we - often for no reason - become bad and the disabling symptoms come back. That is ONE of the reasons maintaining employment can be hard for POTS patients - when a flare hits we most likely will not be able to go to work ( or do house chores etc ), and there is no guarantee how long it will last. 

For most of us overcoming a flare means lots of rest with periods of very light exercises as to not become deconditioned, avoid stimulation or stress, replenish salt and fluid and simply wait until it blows over. Sometimes that can be a few days and other times it can be weeks or even months. Flares are unpredictable and make life difficult, but eventually they are overcome, and symptoms become bearable again. 

I hope you do not experience flares?

[Teodor]

Thank you very much for the thorough answer! I have EDS and dysautonomia and many other complications and I think what I am experiencing is flare episodes and not benzo waves because I stopped them two years ago and never really recovered. Is there any known cause, like what exactly is happening with the ANS when it stucks in a flare episode?

[Pistol]

10 hours ago, Teodor said:

Is there any known cause, like what exactly is happening with the ANS when it stucks in a flare episode?

That depends on the mechanism of your specific type of dysautonomia. There are many ways by which the ANS can malfunction, that is why - for example - POTS patients vary in symptoms and treatment response. Whether you suffer from NCS. OH, POTS or other forms of dysautonomia - they are all caused by a certain way the ANS does not respond normally. As I mentioned above, the triggers of a flare cannot always be clearly identified. I have had HPOTS for over 12 years and now - luckily - have identified and can try to avoid many of my specific triggers. For example: allergies and insect bites are a trigger for me b/c histamine release causes vasodilation and this causes my ANS to respond by dumping adrenaline to compensate. Also barometric pressure changes cause me to flare badly - I read that these pressure changes can affect oxygen levels in the air as well as our BP. Again - in my case a change in barometric pressure will cause vasodilation and this - again - will cause a dump of adrenaline from my ANS. 

But there are many triggers that can cause worsening symptoms, and each of us responds differently to different things. What can be helpful is to keep a diary of how you feel each day, also recording HR and BP at certain times each day. Eventually you will see a pattern emerge that can lead you to identify your specific triggers. 

[MikeO]

I keep a daily log and alway take a first thing in the morning BP. If i am having a good day i just make the one log entry. This has been very helpful remembering what triggered a bad day or event as well as talking with my Doctor.

  

[Pistol]

@MikeO - that is a perfect log! If I was a teacher I would give you an A!!!!

[MikeO]

@Pistol- Thanks, but i have the credit to my nurse Tammy for pushing me to update a log. She is relentless to have me do this. Not sure why she took me under her wing but she did and has made a difference in my care. All i can say to folks is do the same.

Thanks,

Mike

[Teodor]

I am extremely weather sensitive too. I had no problems with the weather when I was young and healthy. I still can't understand how such a small change in barometric pressure can throw the ANS in such a messed state. Maybe it has become extremely sensitive and overreactive, but in my case I am wondering could this be a result of baroreceptor damage instead, because the doctors found I have hypoplasia of the arteries in the neck that is most probably caused by the EDS.

[MikeO]

16 minutes ago, Teodor said:

baroceptor damage

I have this on the list of have to ask the neurologist. While i have had issues for a good number of years and started progressing after open heart surgery, my first really bad event "was hurt" hitting the floor was a month and a half after my carotid endarterectomy has been downhill since

[CJ65]

My dysautonomia started after neck surgery where my glossopharyngeal nerve (cranial nerve IX) was damaged, specifically the sensory/afferent pathway. Branches of this nerve ennervate the baroreceptors in the carotid sinuses and aortic arch. So when I stand, the message from baroreceptors to brain is interrupted and my brain thinks I’m bleeding out = hello sympathetic overdrive! I mention this @MikeOand @Teodorbecause surgical trauma to the neck or radiation can cause baroreflex impairment/failure which you probably know. There are case reports in the literature if you search baroreflex failure. Theoretically the un damaged side should override the aberrent messages leading to homeostasis. All that being said I am not sensitive to barometric changes but postural changes for sure. 

[MikeO]

1 hour ago, CJ65 said:

So when I stand, the message from baroreceptors to brain is interrupted

@CJ65this is what i question. Hopefully I can get a diagnosis because it does consume a good part of my day. 

[CJ65]

Carotid endarterectomy and radiation are both risk factors for baroreflex impairment. Do you have labile/high BP too?

[MikeO]

14 hours ago, CJ65 said:

labile/high BP too

Yes, does not take me much to get up to 180 or 225 when not feeling well. Edit: adding i can also drop into the 70's as well

[MikeO]

did find this writeup on baroreflex failure id interesting.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1855694/

[CJ65]

On 8/4/2021 at 1:48 PM, MikeO said:

Yes, does not take me much to get up to 180 or 225 when not feeling well. Edit: adding i can also drop into the 70's as well

Same here

[MikeO]

9 hours ago, CJ65 said:

Same here

Are you using any drug combos to control the highs and lows?

[toomanyproblems]

On 8/4/2021 at 4:48 PM, MikeO said:

Yes, does not take me much to get up to 180 or 225 when not feeling well. Edit: adding i can also drop into the 70's as well

Are you talking about heart rate or BP? If BP you mean systolic 180-225?

[MikeO]

3 minutes ago, toomanyproblems said:

Are you talking about heart rate or BP? If BP you mean systolic 180-225?

Sorry should have clearer. I am talking about the systolic BP. My diastolic can easily hit 105-117 range. 

[CJ65]

On 8/7/2021 at 4:09 AM, MikeO said:

Are you using any drug combos to control the highs and lows?

Guanfacine and Propranolol keep HR and BP 150s/90s and hr 70s-100 unless I have any stressors or I’m late with meds

[MikeO]

5 hours ago, CJ65 said:

Guanfacine and Propranolol keep HR and BP 150s/90s and hr 70s-100 unless I have any stressors or I’m late with meds

Thank You! how is the Guanfacine working out for you? any undesired side effects? My two main meds for now is Metoprolol and Mestinon but, i am sure this will change soon. I have pretty accepted that i will never normalize my BP's

[CJ65]

Guanfacine has been better fatigue-wise than Clonidine but still makes me tired. I can’t live without my alpha blocker! My BP is still labile but not in 240s/120s anymore thank goodness as long as I can control stress, rest etc