Symptom Fluctuation And/or Flares

[gjensen]

I have a hard time making sense of this stuff.

Last week I could not lift my head. This had went on a little over a week where I had my weird spells off and on. It started at the same time I tried mestinon.

For the last four days my symptoms have been much more tolerable. I did go go back on the clonidine and have started licorice root. I have also been more religious about wearing the compression garments. I am drinking all of the water that I can handle.

I do not know if what I am doing is helping or not. In time, I imagine that I will know. My symptoms have been fluctuating like this, but this may be my best spell.

What does it mean and why do the symptoms fluctuate so much. I had one half of a day around a month ago where my HR was near normal. If my system can function near normal one day, why can't it on others?

Right now I am thankful for the reprieve. I am not near back to normal, but I can tolerate moving around. It gives me hope that I can get better, but how long this lasts is still to be known.

Any thoughts on the fluctuation of these symptoms would be appreciated. I go from POTS on the milder side, to unbearable. I do not understand.

[looneymom]

Licorice root will help you retain your fluids. There are some really good post on licorice root. I'll see if I can bump them up for you. The clonidine will help regulate norephrine levels and helps with pain. Tyler takes the extended release cloinidine at night to be able to sleep.

Rachel

[Hope]

Symptoms seem to fluctuate for many reasons. Some of my triggers are the weather (hot/cold, rain/shine), the full moon, my monthly cycle, foods that I eat, stress, using too much energy in one day, viruses, etc. Most days I struggle to keep my BP up (except lately it's been good), but if I am coming down with a virus, my BP is normal to high. My heart rate can get out of wack even more than it is if I am coming down with something also. Allergies are also a big culprit for me. I didn't realize it at first because I used to get really bad sinus symptoms from them but now I don't, instead I get huge drops in my BP and a racing heart. That's why I love winter in the North so much. My allergic reactions are minimal at this time of year.

I know, its very frustrating. I have so many times been in tears saying "I was normal yesterday, what happened? How can I be soooo not normal today?"

I hope you figure out what causes your fluctuations. You may or may not be able to compensate for the triggers, but even knowing gives some peace of mind and makes you feel less out of control.

[gjensen]

Thank you Rachel. Licorice does seam to be helping.

Hope, not like I know. Otherwise I would not be wondering. But . . .it seams that these head symptoms is what comes and goes the most, and what I am least able to tolerate.

After my "good" spell, my head symptoms are back as they were. The head pressure, dizziness, ear ringing, sound sensitivity, etc. is very frustrating.

If I could understand fully what causes this, and understand why it comes and goes . . . that would give me a chance to identify triggers.

This limits me the most. The HR limits how much I can do. These symptoms keep me from doing anything at all.

[ramakentesh]

This is the nature of autoimmune and autoinflammatory illnesses. Very few other types of illnesses wax and wane with spontaneous flares and remissions. If you read patient descriptions of conditions like MS and Ankylosing Spondylitis you will note that their flares ups and remissions are identical.

Id encourage anyone with random fluctuations in symptoms to see how they feel during the build up to a storm.

Id also encourage anyone with this presentation to get a QSART or skin biospy as this presentation often occurs with neuropathic POTS (specifically the autoimmune small fiber autonomic neuropathy)

[ramakentesh]

Licorice is fantastic by the way. It contains natural steroid like compounds that can suppress autoimmunity, acts to increase dopamine in the brain which can help energy (is a mild central stimulant), reduces nitric oxide in the endothelium increasing vasoconstriction and ofcourse its main function is to trick the kidney into increasing sodium in the blood.

[gjensen]

This is the nature of autoimmune and autoinflammatory illnesses. Very few other types of illnesses wax and wane with spontaneous flares and remissions. If you read patient descriptions of conditions like MS and Ankylosing Spondylitis you will note that their flares ups and remissions are identical.

Id encourage anyone with random fluctuations in symptoms to see how they feel during the build up to a storm.

Id also encourage anyone with this presentation to get a QSART or skin biospy as this presentation often occurs with neuropathic POTS (specifically the autoimmune small fiber autonomic neuropathy)

Thank you very much. This goes along with I have started to suspect. If I could get a doctor to go along.

I have small fiber neuropathy. Tested positive for autoimmune antibodies, but no specific test was positive. A Qsweat test showed abnormally low response in one spot and no response in another.

Not to mention the TTT, abnormal swallowing test etc. etc. Still I have a neurologist acting as if nothing is wrong.

My good spell is over. I am back to not being able to lift my head. Hopefully this flare will end soon.

I felt good up to the "storm". It did build though. I knew it was coming.

[gjensen]

Licorice is fantastic by the way. It contains natural steroid like compounds that can suppress autoimmunity, acts to increase dopamine in the brain which can help energy (is a mild central stimulant), reduces nitric oxide in the endothelium increasing vasoconstriction and ofcourse its main function is to trick the kidney into increasing sodium in the blood.

I am having trouble telling if it is helping now, but I am sold on it. Up until this flare kicked in, I felt better than I had in a while.

[ramakentesh]

Seemed to elevate energy and mood for me

[Relax86]

If I were to go back and re-read my posts it would be characterized by fluctuations and flares. The holidays seem to be fainting season for me. Most of my worst flares were in Jan - usually right after the New Year. This year I didn't even make it that long. Who knows. I do have an autoimmune component so the timing makes sense for me. I also have symptoms with storms, heat, previously was hypovolemic (prior to uterine ablation), etc. It's the unfortunate growing process of this syndrome trying to figure out it's patterns. And also, not letting it get you down when a flare comes out of the blue. One of the things that helped me the most is to learn to ride the POTS wave and most importantly - you're not alone. Good luck.