Jennij

Hello All,

A while back I heard from a member who sees a cardiologist at Dartmouth Hitchcock in NH and I can't seem to find that info now. Does anyone have a cardio doc there?

Thanks.

J

I feel like it when I am stressed for ANY reason. My body just can't cope with anything out of my comfort zone with zero stresses. But, I do not have Addison's and my cortisol is never low when tested. It has crossed my mind, however, if there isn't something going on with my POTS that doesn't allow me to have enough cortisol in a stressful situation OR that the cortisol I have somehow cannot be utilized correctly(hmmm, maybe an autoimmune issue?? like everything else suspect of POTS)

I agree that it seems like my body cannot cope with ANYTHING out of the comfort zone. Even the most minor things stress my adrenal system.

Just wondering if anyone has Addison's Disease or symptoms of it due to POTS?

My bloodwork results just indicated that I have high potassium levels and that I have hypothyroid. I tried armour thyroid and it made me feel terrible. Now my doctor is suggesting I take a natural thyroid supplement or synthroid. For the potassium he's recommending a diuretic. I'm hypovolemic though and have problems retaining fluid as it is, is a diuretic the right approach. I'm feeling very lost in all this information, does anyone also have hypothyroid and high potassium? What do you take for it?

I guess the strange thing is that it happens bad like this when they don't stick the vein right the first time. Sometimes, when they get it in just right, I feel the "normal" lightheadedness of getting blood drawn but not a full on launch of my POTS symptoms.

I'm not sure why this happens, but if I'm having bloodwork done and they have a hard time sticking my vein and have to move the needle around it causes a major symptomatic episode (i.e. almost pass out, bp drop, major weakness). Does anyone have this problem?

For some reason it was a trigger for me when I tried it a few times. It sent me into major episodes of multiple symptoms.

I have been taking turmeric for about a year. I don't really notice any significant positive effects but no negative so that's a good thing. I do know its highly recommended by many people.

I too would love to know dosage amounts and types to take for many of these supplements. Is the reccommended dose on the bottle often the right ammount? (For example is the ammount of B1 in my balanced B-Complex enough....? Is the citrate form of Mag. the best one?) Any thoughts?

Interesting update on the stockings....I switched to thigh high instead of waist high compression stockings and I didn't feel the same dizziness that I did immediately after putting on the waist high ones. Not sure of any real benefit yet though. Definitely felt nerve pain in my legs with them on.

And now, after just taking them off, my legs look like they do on my worst pooling days! Strange?

HyperPOTS8,

I have hyper POTS and I thought that hyper type POTS patients don't tolerate Florinef well. Is that the case?

Thanks for the suggestion for the abdominal binder. I will try that. I purchased a pair of thigh high comp. stockings after the waist high were too much and made me feel bad. Maybe an abdominal binder would work ok though. It's worth a shot since I really want to be able to retain the water I drink.

That sounds right. Not sure what the point is though. The more salt I take, the more water I drink and the MORE I go to the bathroom....like every 5 minutes. After every glass of water I have to run to the bathroom. It seems I'm not retaining any of it. So, again I feel like what's the point.

So I've starte taking salt tablets. My doc prescribed 1g 3x/day. He didn't say how much water I should be drinking though. Does anyone have suggestions? Thank you:)

What strength do people wear? I agree about the tightness around my waist worsening abdominal symptoms. I also experienced more nerve pain in my legs and feet than usual too. Is that common?

Hi all. My doc recommended that I try compression stockings for the pooling in my legs. I put them on for the first time today - Juzo waist high 20/30 - and I'm feeling super dizzy and symptomatic. What strength do others use? Could that be the issue?

I was told I have hyper type POTS and am hypovolemic but I am confused because NE levels weren't tested, only based on high BP while standing. Can hyper POTS be diagnosed stricty on high BP while standing during TTT?

How do we know if we should vasoconstrict or dilate? Isn't what I'm doing with the stockings vasoconstricting??

Sorry if there are too many questions in this one post.

Very helpful. Thanks for the input:)

My doctor prescribed Mestinon at 60mg 3 times per day. What have others started with?

Does anyone with hyperadrenergic type use Mestinon or have you tried it? I'm thinking about trying it.

I didn't get those levels checked. Doc noted high BP upon standing and I guess felt that was enough.

Just wondering if anyone has had a chance to ponder this??? Not sure what difference knowing whether I have hyper adrenergic POTS or not will make but I think treatment options differ depending. Thanks.

I've just been reviewing my original POTS diagnosis report from four years ago and am more confused than ever. It's saying that my BP was elevated during supine position and that there were large fluctuations of BP and "blood flow" during tilt. My heart rate response to tilt was "exaggerated". The doc's conclusion suggests "evidence of cardiac adrenergic overactivity....consistent with adrenergic cardiac denervation. Findings are consistent with hypovolemia as well."

So, is "cardiac adrenergic overactivity" the same as hyperadrenergic POTS??

Thanks for any thoughts.

My symptoms are all made worse with the heat as well! It seems air quality has a lot to do with it for me. Humidity and no air flow makes everything worse, almost no matter what the temperature. Even when I go into a store or something where the air is bad (I.e. musty, stale, moldy, dusty, etc) it brings on symptoms full force. But most definitely, add high temps to high humidity and it's not good!

It seems a bit different for everyone but maybe the more specialists referring the better?

Thanks for the input....every bit is helpful in this big puzzle.

Thanks for your input. It is daunting yes and I just want to make sure the process is done right so I can actually get in! Thanks again:)