kayjay

Also I think my metabolism was really high- I believe at some point I developed a problem with gluten but even with that aside I had a really hard time gaining weight. I had to work hard to gain when I was expecting both of my child and I was in normal clothing a week after my first was born- my second it may have been 2 or 3 weeks. It was not healthy but I couldn't help it. My husband and I consumed disgusting amounts of food. a cheese cake didn't last 24 hours in our house. I think some of my high metabolism may have been related to Adrenalin. Looking back I'm pretty sure it wasn't normal

I was diagnosed with hyper pots by Mayo clinic. They diagnose based on NE levels. I do ocassionally have adrenal surges (more frequently when I'm in bad shape). It seems that suges happen with many "regular" pots patients too. If your Bp gets low it makes sense that your adrenalin will kick in. My excessive adrenalin is not stricly episodic. It was high all of the time- or so I assume because every 24 hour urine collection I took indicated an adrenal tumor. My symptoms of hyper pots before treatment did include bouts of high blood pressure at times. Sometimes it was normal. I also was very sweaty and hyper. I barely slept for years. I had trouble fall asleep and staying asleep. Interestly (to me) and possibly related- I need large amounts of anesthesia for sugery. I've had 3 surgeries with pots and each doctor found it amusing that it took so much anesthesia to knock me out. Most recently I tried to get off of the table in the operating room to use the bathroom. I am a female and not particularly heavy. I only made this assumption recently because I am sensitive to medication- just not sedatives. For me hyper pots made me feel amped up- at this point I've been diagnosed with chronic fatigue but I used to feel as if I was was super caffeinated. My hands would shake terribly and I would try to cover it up by telling people "I need to stop drinking coffee"... It was embarrassing. Now I look back and think "it was the adrenalin. I'm mentally a pretty steady person (I think) it's hard to describe but I felt physically "amped" without the expected mental element. I also felt like I had to urinate all of the time. I could ignore it at work but I would get up 10-20 times at night- usually I wouldn't actually pee. Beta blockers have been the most helpful. I sweated a lot- almost all of the time. My bed sheets were soaked at night. They may have been like "hot flashes" but they started in my 20's and were in the absence of hormonal problems, fever, or infection. I wasn't even really hot or cold. I was just sweaty. I'm also not sure if its relevant but a heart rate of 120 isn't very high for me. I've said this before, but I was 190 just brushing my teeth. My Orthostatic tachycardia was robust! I was also exercising and fit so my resting heart rate was quite low. I just recently looked at a tilt table result. My hr increase about 100 bpm. I hope this makes sense. This is just my experience. Beta blockers have really helped decrease my excess of adrenalin.

No -the company is Flora. The name is Udo's choice. The one I'm using is Super Bifido Plus Probiotic. If you search "flora" you can find it. Sorry I'm not familiar with undo I found it in the refrigerated portion of the suppliment isle in Whole Foods.

Thanks corina- The best brand I have used so far was one that I purchased from Whole Foods. It's made by the company Flora. I think that one that calls for refrigeration works best for me. It also has pretty obvious dating on the bottle. My understanding is that probiotics lose efficacy over time.

I might sound kinda obvious - but 3 simple tests that have been abnormal for me Vitamin D, Ferritin, and Sodium. I think everything but the D is pretty standard. You mentioned nutrient panel so I bet you already thought of those three. I also want to encourage you about the Ativan. I was on it and then switched to klonopin for a few years. I've been off of it for a long time now. When I feel super panicked I almost wish I hadn't tossed it in the trash- but it's a passing thought. I thought it really helped me initially but currently I'm better without it. My memory is also much better. Good Luck!

Is it ok to post here? I'm not sure so I'm going to send you a pm. Ok?

I'm not underweight at the moment but I have been. Can you tolerate protein shakes? Right now I just want to maintain my weight but in the past when my weight started to drop I would drink protein shakes and eat a lot of cheese and nuts. If you like icecream you can make protein shakes with it instead of milk or water. I think you are really wise to pay attention to your weight. I try to get on the scale about once a week to keep myself in check one way or the other. My inability to exercise with intensity makes me worry a bit that if I get too heavy, I won't be able to lose the weight without compromising my nutrition. When I was very thin I actually liked being able to wear anything. I was like a clothes hanger I didn't do it on purpose (and I had an undiagnosed problem with gluten). Could you possibly have an undiagnosed issue with something that you are eating? The bad news about being so thin is that your body doesn't have the reserves that it needs. In 2009 I had a big flare which sent me into the hospital. One of the first things I packed was a big container of nuts. It has also helped me in the past to make myself eat on schedual. I accidentally lost a lot of weight when I was in college and again after my children were born. My mom would actually remind me to eat. It seemed silly at the time but it did help me get to a more normal weight.

Issie- I recently added a good probiotic to my routine. I don't know the brand off hand but it's kept in the refrigerator. I've used them before but this is the first time I've really noticed improvement. I'm sure you are on top of it- but I thought I would mention it just in case. It's really hard to get all the nutrients you need on a restrictive diet. I'm gluten free/low fructose so I think about EVERY thing I eat. Very boring!

Also - I'm not even going to address the faults in the "research". Sample size and selection are 2 more red flags. Correlational research doesn't prove cause and effect anyway.

The best "earthing" would be swimming in the ocean.

Thank you Janet! You are very sweet I'm a bit better this afternoon but I had to up my salt my last two sodium levels were low. I should have communicated better- I wish I knew what caused my pots- especially because I have children and I wonder about them. Also I have control freak tendencys. I just believe at this point I will never really know. My immune system is very healthy now. No markers of autoimmune and almost zero inflammation. I mentally have "moved on" a little for the sake of my sanity. Thanks again for your kindness. I'm very sorry that you know what high blood pressure feels like. It's pretty rotten.

In theroy I agree. Practically speaking it isn't always possible to find the root of the problem. I personally have stopped looking for a cause and am doing ing every thing I can to stay as healthy as possible. We do know that in the long term high blood pressure will trash your kidneys. If it was possible to control my blood pressure in any other way I certainly would. I think it's wise to question the use of prescription drugs but they also save lives. I am thankful for beta blockers. They have not only improved the quality of my life, they have also quite possibly prolonged it.

It really doesn't matter to me at this point "why" I have pots. At this point a cause is unlikely to be determined. Probably a combination of factors including genetics and autoimmune "triggers" are to blame for the onset in my case. All I can do at this point is treat my symptoms and that includes medications as well as diet and lifestyle changes.pots is a "syndrome"- not a disease-so for me treating the symptoms is my main goal. I have a friend with ms and our goals are similar. We want to have the best quality of life possible, and we want to stave off as many future problems as possible. I certainly will treat my pots related high blood pressure with medications, not only for the relief of symptoms, but also in an attempt to offset some of the damage that uncontrolled high blood pressure can cause. IMO the suggestion that these are compensatory mechanisms is obvious. Our bodies are always trying to stay in balance. Passing out is a "compensation" and a symptom. I'm a daughter, a wife, a mother, a friend- not treating my symptoms would be irresponsible and selfish.

I actually thought about this more- the whole idea of hyper pots- which I have- is that the increased adrenalin will increase heart rate and blood pressure. It's not an either or thing. Adrenalin has certain effects on the body. Increased heart rate is one, increased blood pressure is another. It's more "normal" for hyper pots to have an increase in both. I'm sure any number of combinations are possible.

Janet- thank you for sharing! No the low heart rate isn't caused by medications. I did have some low hrs when i began the betas but it also knocked back my blood pressures. I do take nadolol but only a small amount and I've been taking it since 2009. If I had the high Bp first I would just up the nadolol. I can tell you I feel better with a hr in the 190's than with a hr in the 40's. Very puzzling for sure. I've had low hr episodes summer for some reason. The last time it happened it lasted for hours and my Bp was very high. My husband said in the in the er it was 185/122. With a hr in the 50's. To the op- I hope you don't feel hijacked! I will say that some of us are so inconsistent with our hr and Bp. Figuring it out is like chasing the wind.

Actually no. It's not so simple. And no- a heart rate in the 40's is not normal for me although a spike in blood pressure can occur with bradycardia. Recently my high Bp has been a RESPONSE to low hr. Normal for me is high heart rate and high Bp.

I currently have high Bp and low pulse. Haven't been able to get it above 100 for a few days. It's been 40-60. I'm hyperadenergic but not sure i would meet the pots criteria at the moment

If you have low vitamin D it's not good for your skin. I've noticed that my skin is less dry after several months of really paying attention to my D. Also when my iron levels were low my skin was dryer. I'm gluten free and limit dairy so it's hard for me to get what I need without suppliments.

there are certainly dangers to being outside. My husband and dog got Lyme disease.Shoes were invented for good reason. I do agree with the idea that it might not be a good idea to live under power lines lol!

I'm sorry- I don't have the numbers from this year but 27 sounds about right. I was 37 briefly in 2009 which isn't deficient but it's low. Not feeling good-I did avoid full sun. We put shade up in our pool area, I was wearing a fishing shirt outside, a hat and sunblock. I was also using an umbrella at the beach. I'm certainly not d deficient now Mayo clinic recommend 10 min a day with 40% of skin exposed as a minimal dose. Because I don't drink milk I need to suppliment in the winter. If you live in a northern climate you should consider supplementing, find a safe sun bed (hard to do in the us), or eat fortified foods.

I do not have a "grinch" sized heart. Levine's protocol is not for everyone. My doctor, who diagnosed me, told me that it would not be helpful for me. If your pots was caused by deconditioning, exercise could cure you. If you're like me and became deconditioned BECAUSE of your illness, I would find a new doctor. It made me really sad to read "I don't think he's even convinced that I am sick". For that reason alone I would keep shopping for a doctor until you find one that will help. Best wishes to you. If you are near Philadelphia pm me. Oh- I just saw Sarah knows doctors in NYC. Good plan!

kris- I'm going to second a lot of what Sarah said and add that I went to mayo Rochester and am quite confident in my hyper diagnosis. Johns Hopkins in Baltimore told me that they were "%100" sure that I had a pheochromacytoma. I turned thirty during my stay at NIH where I was a lab rat. I'm not sure if I can name doctors but he was the guru of pheos . I do not have a pheo but every endo I've ever seen was sure that I had one. Every 24 hour urine test is positive for pheo because hyper pots can dump so much adrenalin. My point is it is possible to be hyper enough to indicate a tumor- without a tumor. Finally I have a diagnosis that is correct and I can deal with some of my symptoms. Best wishes to you and please keep us posted.

That's ok- I am in the north east and it's nearly impossible to get enough sunshine in the winter. I also don't drink milk. You would have no way of knowing that. I'm off of sunblock for good these days A good reminder for people to get their "d" levels checked. I was quite surprised when mine was low in early April.

I'm barefoot still I'm very pro- barefoot. I try to spend as much time outdoors as possible. I'm not sure where the "one hour" came from. I live in the country and I wear shoes when I'm around my animals with hoofs-because I don't want my foot to be damaged! Otherwise I'm barefoot. Of course I have to wash my feet before bed because they get grass stained and yucky. My radar went up when you mentioned purchasing a special bed sheet. I'm very glad that you feel great. You wrote "I Think Earthing Cured My Dysautonomia" .I wanted to share with people that I "earth" all summer, most of the spring, and fall. It hasn't cured me yet.

If it's not normal for him I would mention it to a doctor. Maybe keep an eye out and see how it continues. My son sometimes sleeps in really odd positions. (He doesn't have dysautonomia) he will sleep basically on his knees and face down. I think he sleeps in more odd positions when he is overtired. I'm sorry that it's one more thing for you to worry about. I only have two children but my son is the only one I've found in odd positions or hanging off of the bed.