kalamazoo

I've had several brain MRIs to look for both MRI and to watch the pineal brain cyst I have. I would find a doctor who listens, my general care doctor basically orders me whatever testing I ask for because she knows I do the research and I usually bring her information as well. 

Well with both insulin resistance and pcos hormonal issues are supet common, i have them too. Def go get everything checked out and let us know what happens!

I would highly recommend a glucose tolerance test. It diagnosed me with insulin resistance as I also have PCOS. My symptoms greatly correlate with my insulin levels, I can feel when they're high, my blood sugar is fairly normal but my insulin levels are 5x normal and when they're high I get exaggerated POTS symptoms. 

Yes i have this too. Mine is different though, it's more of a phlegm build up i guess and its always in the back of my throat. Swallowing is hard for me and doctors say it could be an allergy

I'm being check for mcas right now, blood test came back no, so i have a urine test coming up. But it doesn't look like i have it

Update?

Sarah I get that too, not as bad as I used to though but mine is primarily in my hands, I used to have it everywhere it felt like. Have you tried the medication to help ? I've never heard of that before

I'm either really cold, fingers almost turn blue, or really hot and my hands are warm and puffy to the touch. I sometimes feel ok in between but it doesn't last long. I used to wear flip flops during the winter actually for years in the snow. I haven't owned a real jacket in years and I can wear mittens for about 15 minutes before my hands get too hot and turn red.  I take showers with warm and cold temperatures or my feet and knees swell. I can't take baths, etc etc lol. 

How interesting because here in Alaska I don't ever wear coats because it makes me flare, the cold helps relax my veins I guess but I'm cold all the time lol

You don't want to live here, lol. Most of the people who live here don't even want to live here. I'm actually moving to Seattle at the end of this year so I can see a specialist at UW thankfully. The doctors here are worthless. I literally mean worthless. I got my first TTT here because I brought my cardiologist a pamphlet on POTS and the TTT and he said sure, but had no idea about it prior. I got my diagnosis of insulin resistance because I demanded a glucose tolerance test, not because it was suggested. I basically do all the research for everything. Majority of people who live here out source their medical needs to Seattle because the health care is so poor, not to mention the average prices are 10x that of the lower 48. It's insane.

You have to have a relatively high dose of propranolol for it to lower your blood pressure a significant amount,  I think usually 30mg is kind of standard for POTS. I was taking 30mg 3x a day and i think it was raising my blood pressure. Over the last few months my BP has been raised, slowly increasing. Ever since I've been off the propranolol my BP has gone back down to 115/80. I am not sure if there is a correlation but I do think propranolol might have affected it. Propranolol didn't help me TOO much, but it didn't keep me from going full "panic" mode. It's a widely used beta blocker though and has very good reviews with little side effects (I did a ton of research on it before taking it) So I wouldn't worry too much. It could possibly help you.

Resting 70-90

Standing 100-120

Active 120-150

"Panic Attack" 180ish

I have hyper pots and my bp gets high anyways when i exert myself so any type of vasoconstrictor would probably be bad for me i think

That sounds like what i have, i was disagnosed with erythromlelgia when my symptoms were at their worse. 

I have the same issue as stated above. I live in alaska and if im outside for too long when i come inside my extremeties are on fire and they burn from the sudden temperature change then they go from ice cold to very warm and dilated in such an uncomfortable way. I dont drink warm liquids, eat hot food etc. If i get hot my hr immediately goes up to at least 150. I used to have really bad EM where my extremeties would be red hot, now its more just my veins and slight redness but not like it was before where my legs would be beat red. I'm not sure what help, a lot of years id say of lifestyle changes essentially. I also became vegan and gluten free, i eat very small meals and drink ice cold water all day to helo regulate my core temperature. I can't stand for too long and usually wear flip flops. Never tried medicine for it because doctors dismiss it completely despite it being my worse symptom. Sometimes i "flare" so i have to keep my arms above my head and run them over cold water bevause my veins get too "full" and it feels like they'regoing to explode

I have had heal intolerance/painful and lack of sweatin for years so i dont think theres a correlation. My insomnia isnt as bad though

Since stopping my propranolol my blood pressure has been 115/80 almost consistenly. I do think there was an issue with it.

When I'm sick my symptoms get worse, and my bp and hr get higher, completely normal for people who don't even have health issues so i really wouldn't pay any mind to it. 

Oh wow this is very interesting as I've found that my propranolol barely helps me at all anymore and I've basically stopped taking it. I'll have to ask my cardio about clonodine but I am going to the UW neuro center where they test and have specialist. Will be seeing doctor So I believe. Hopefully that might help too.  Hyper pots is frustrating,

I would see about going to an endocrinologist to have your hormones tested, it's a bit different because you're not a female and with my issues I experience high spikes when it's near and during that time of month. But you should have your vitamins, hormones, thyroid, cortisol and whatever else might be helpful. POTS affects all systems in the body so it's not abnormal for something to be imbalanced. I hope you can figure out what's going on, even maybe checking your glucose levels. I know that with my insulin resistance high testosterone levels are a symptoms of that which is what I have. 

My bp lingers around 110/90ish these days but with any activity or heat it shoots up, is this something you guys experience too? Wondering if this would help more than propranolol

What meds were they

If you were on the verge if cardiac arrest the chances of them finding it are very high. Obviously we are not doctors but if you've seen multiple doctors telling you your pulse is ok then the chances of it being okay are also pretty high. I think you maybe could benefit from some anxiety medication. I know i do 

Ive had my blood pressure at 155/105 and felt a little anxious but nothing too weird. Everyone is different. But still ask your doc about it. They'll tell you to check it at home since readings in doctors offices arent accurate due to stress

We're not supposed to give medical advice but i would assume if youve had multiple doctors say your pulse is alright that is probably is. Did they say anything about your bp? Anxiety maybe?