Different Diagnoses/How to Cope with Symptoms

[Nemesis]

Hi I live in hot country there's no specialist in dysautonomia and it's rare medical case in my country,  few doctors know about it.
One of my doctors said I have vascular/vasomotor instability
Other one said pots
Third one said Hyperadrenergic POTS

My problem is

1-Always standing increase my blood pressure 10 degrees approximately but always hypotension never increased to hypertension which the reason my 3rd said Hyperadrenergic pots beside my hemeglebic migraine -  I cured from it- light trigger rapid heart rate
I can't do exercises unless laying in the bed if I stand and bend my knees or sit in the floor when I stand and when I climb stairs oh my god very rapid heart rate headache, if I went outdoors I get fatigue standing alot make me dizzy can't do any work if I raise my legs especially left i feel dizzy rapid heart rate my leg became heavy

2- I feel thirst alot even drinking water doesn't quench the thirst and I get hydrated and feel cold dizzy sleepy can't concentrate rapid heart rate when I drink oral rehydration salt in addition to half teaspoon salt it quench thirst and hydrate me without adding salt to oral rehydration salt or water then drink normal water my thirst and dizziness don't go away
VMA, sp gravity urine is normal
I have hypothyroidism

3- most nasty problem I can't satand heat unfortunately my country too which make things worst, sun trigger my migraine, rapid heart rate hypotension my blood pressure is reach 80/40 sometimes fatigue
Can't approach any warm or heat source even warm drinks and foods my hand extremely sensitive to heat my hands feel warm or normal things to others very hot
I always have hot flashes
The back of my head and upper back and this zone doesn't feel with cold things and ice like I put normal thermal, and extremely sensitive to heat my entire body doesn't sense warm like hot except for back head and upper back hot flashes doesn't go without putting ice at back head and upper back on summer can't sleep on pillow i put ice because of back end and upper back this zone feel normal cool bathing water as warm in summer, I cant satnd human touch I feel it hot
I feel with tingling which doesn't go unless I put ice on it
Can't waer heavy clothes
My normal body temperature is 36.4° sometimes 36.6°
lh and fsh and prolactin normal and i have normal but painful menstruation

4- every 4 hours feel hungry my blood sugar low I can't raise it with sweet as I have glucose intolerance I carbohydrates

5- my memory affected and I have brain fog

All this problems happened after my Steroid diabetes which lasted for a year and gone since 2012

I take fludrocortisone 1 bill and midodrine, Bisoprolol 2.5 1 bill, eltroxin 100 mg

If you have these symptoms, how do you manage them? Specifically how do you decrease thermal sensitivity and stop thirst? 

If you have any of these diagnoses, do you have these symptoms I am describing?

Thanks

[Katybug]

These symptoms sound fairly consistent with POTS/Hyperandrenergic POTS.  Unfortunately,  finding what helps control the symptoms seems to be trial and error for each of us. 

You mention that you can't feel temperature changes on certain parts of your body. Have your doctor's evaluated you for any sort of neuropathy?  That is a common issue with POTS patients ts and might allow more targeted treatment. 

You say you live somewhere warm. Some of out members use cooling vests which can be purchased online. I also struggle with temperature regulation issues. I get both extremely hot/sweaty from even a small change in the ambient temperature, and, I also will become so cold I shiver uncontrollably.  For the heat, I use ice packs and have fans in the rooms I spend the most time in. But it's still definitely a problem. 

Mestinon (pyridostigmine ) is a medication that helped me quite a bit. It might be worth having a discussion with your doctor's about it. 

[Nemesis]

10 hours ago, Katybug said:

These symptoms sound fairly consistent with POTS/Hyperandrenergic POTS.  Unfortunately,  finding what helps control the symptoms seems to be trial and error for each of us. 

You mention that you can't feel temperature changes on certain parts of your body. Have your doctor's evaluated you for any sort of neuropathy?  That is a common issue with POTS patients ts and might allow more targeted treatment. 

You say you live somewhere warm. Some of out members use cooling vests which can be purchased online. I also struggle with temperature regulation issues. I get both extremely hot/sweaty from even a small change in the ambient temperature, and, I also will become so cold I shiver uncontrollably.  For the heat, I use ice packs and have fans in the rooms I spend the most time in. But it's still definitely a problem. 

Mestinon (pyridostigmine ) is a medication that helped me quite a bit. It might be worth having a discussion with your doctor's about it. 

Thanks I will see about cooling vest

I will ask my doctor about it

Well I took neuropathy medicines weren't effective maybe that relate to my migraine

Thanks again

[Nemesis]

13 hours ago, Katybug said:

These symptoms sound fairly consistent with POTS/Hyperandrenergic POTS.  Unfortunately,  finding what helps control the symptoms seems to be trial and error for each of us. 

You mention that you can't feel temperature changes on certain parts of your body. Have your doctor's evaluated you for any sort of neuropathy?  That is a common issue with POTS patients ts and might allow more targeted treatment. 

You say you live somewhere warm. Some of out members use cooling vests which can be purchased online. I also struggle with temperature regulation issues. I get both extremely hot/sweaty from even a small change in the ambient temperature, and, I also will become so cold I shiver uncontrollably.  For the heat, I use ice packs and have fans in the rooms I spend the most time in. But it's still definitely a problem. 

Mestinon (pyridostigmine ) is a medication that helped me quite a bit. It might be worth having a discussion with your doctor's about it. 

But is it normal to VMA to be normal with Hyperadrenergic pots? Because my VMA was normal

[Katybug]

What is VMA?

[Nemesis]

1 hour ago, Katybug said:

What is VMA?

Vanillylmandelic Acid, urine test

VMA test may be ordered along with one or more metanephrine or catecholamine tests when a doctor suspects that a person has a pheochromocytoma. They may be ordered when a person has persistent or recurring hypertension that is not responding to conventional therapies, to monitor the effectiveness of treatment for a pheochromocytoma, and periodically to monitor for recurrence

[Katybug]

I've never heard another member who has hyperandrenergic POTS say that they had abnormal VMA. From the description you posted above, it sounds like an abnormal VMA would be associated with a pheocromocytoma but not Hyperandrenergic POTS. Pheocromocytoma is a differential diagnosis for hyperandrenergic POTS, so that all fits that they tested you for a pheo. 

[Nemesis]

8 hours ago, Katybug said:

I've never heard another member who has hyperandrenergic POTS say that they had abnormal VMA. From the description you posted above, it sounds like an abnormal VMA would be associated with a pheocromocytoma but not Hyperandrenergic POTS. Pheocromocytoma is a differential diagnosis for hyperandrenergic POTS, so that all fits that they tested you for a pheo. 

Thanks very much I was so confused  glad I found this amazing site

[corina]

Nemesis, I deleted your post, it's something only mods and admins can do!

[Nemesis]

17 hours ago, corina said:

Nemesis, I deleted your post, it's something only mods and admins can do!

Thanks