DIXZELAND

Has anyone ever flown while having POTS? I just wondered if the high altitude would cause any problems with BP or HR.

Thanks!

Never did I have a past history of high BP until I developed POTS. Upon standing or walking my heart rate begins to race and immediately my bp rises. I must lie down to calm it and take my beta blocker if it's close to being the right time to take it. My bp never goes low upon standing as some peoples does.

Good luck to ya!

Hi Liez

I too have flashbacks. I have a past hx of panic attacks and anxiety that I take medication for as well. I try and remind myself that it will not last long if an episode comes on again and that better days are ahead. I do a lot of praying for strength and guidence. Self talk helps me and I do quite a bit of it when I am alone. Even in the car, no one has to know you are talking to yourself, they probably think I am singing. If I feel a flashback coming on, I will take a xanax just to feel calm and once I do, my mind is at ease instead of racing with all those scary thoughts.

Hope this helps you and remember you are not alone through all of this. We all have something in common with our illness.

Dixie

Out of curiosity, do you flush (turn red) when you drink?

Yes I do. I did before I even developed POTS though. Now its so much worse, with the rapid heart beat. I'll never drink again for fear I won't come back to being "semi normal".

I work as a medical scheduler. I schedule surgeries and radiology procedures for a hospital. If I weren't able to sit all day I wouldn't have a job. On days that I feel horrible, I go into work because I know that I won't have to stand or walk to do my job. Thank goodness!

Hello to all my POTS friends. I have a question involving alcohol. Rarely have I ever drank. Now and then a glass of wine for special occasions. However, now when I try to have a drink, my heart rate climbs and blood pressure sky rockets. Then I have the weakness and tiredness for days after. Why does it cause my POTS to act up? One glass of wine or one bottle of beer and a crisis hits me. Before having POTS, I never experienced these problems with my occasional drinking.

Thanks for any responses.

I drink Gatorade "low calorie". It's less sugar and quenches my thirst. It's much better than plain water.

I experience the exact same thing. When I over eat at meals, my heart begins to race. I have learned to limit my intake, but sometimes its just to tempting to do.

Best of luck to you!

Dixie

I have often wondered why bending over makes my bp rise and my heart rate to beat out of control. Everytime I am up in my attic in a bent over position, to avoid hitting my head on the rafters, I began to feel awful. I am only up there 3-4 minutes before the problems begin.

Hi everyone! Okay if you are going about house chores or are at work - and your tasks have you bend forward from the waist -- or get semi-crouched or reaching to the floor rather frequently ....

Then you suddenly say, "whoa I just don't feel good today" .... and try to think ?why am I having a tough time of it today -- suddenly you think, "you know, it seems like when I pitch forward from the waist -- like to peek in a lower cupboard or pick something up that fell to the floor -- I just don't feel good - maybe it's positional?"

So is there a correlation here for anyone? Do you think it stems from a 'neck' issue because you strain your neck bending and getting up again more than you realize...and maybe you have neck issues that are bothering your autonomic nervous system some how?

Or is it from squishing your stomach or abdomen in the position change forward - so you do something to the blood distribution?

It's not exactly dizziness -- but just 'I want to lay down, I don't feel well'

Any comments much appreciated... I recently moved and the packing and unpacking is beating me up!

After reading your post, I can relate. Everytime I am up in my attic in a bent over positing I get the fast heart rate and my bp begins to rise. I am not up there long, maybe 3 or 4 minutes, but I have noticed this happens to me everytime.

My 12 y/o daughter has seen an allergy/immunologist for chronic cold urticaria for the last five years. He finally came to the realization that she not only has one rare condition, but two.

He first sent her to a pediatric cardiologist who once specialized in Dysautonomia. Five minutes into our visit the "Congenital Heart Disease Specialist" tells us that he only works with "simple" stuff and not the "complicated stuff" and he hasn't worked with Dysautonomia in ten years. He gave us a referral to Mayo in Minn. No tests were done in his office for her high heart rate and we were sent on our way.

Since then my daughter (TLC) developed Migraines, everyday. We get a referral to a neurologist. Despite having well documented information, the doctor completely puts down the concept of Dysautonomia and suggests that one cup of caffeinated tea per day and staying up one hour later on the weekends are probably what causes the pain. She sends us off with no preventatives.

Went to the ER for Migraines and the DO says that TLC is just lazy and needs to get out of the wheel chair and walk. He then proceeds to dope her up until she passes out. Also, he gives us a prescription of Doxepin to replace all the current antihistamines, diagnoses her with TMJ and sends us on our way, while having an allergic reaction to one of the meds.

Okay, my question -- How do you find and keep a good doctor? We can't even go to the pediatrician any more for a simple pain. All her issues are odd and they have no answers. Children's specialists have no idea what to do. No dysautonomia specialist in the area will see her because she is under the age of fifteen.

I refuse to give up getting the answer and a treatment that works, but every doctor visit is so frustrating.

I noticed your post said "Dr.Levine". Would this be Dr. Benjamin Levine? If it is, has anyone seen this dr. before? I am currently waiting to be seen by him in Dallas, Texas. Just waiting my turn you could say. Any info about him would greatly be appreciated as I don't know what to expect once I do get in to see him.

Thanks!

Hello

What medications are you on, out of curiosity? Has a dr evaluated your blood pressure?

For many people with POTS we have episodes like this. they can resolve on their own. But many POTS patients take meds to abate such symptoms.

There are things you can do that do not involve medication that may help. Increasing fluids, wearing support hose, increasing salt (but talk to your dr first about salt).

I know these episodes are quite uncomfortable.

I am on Metoprolol 25mg. I take 12.5 in the am and 12.5 in the pm. It use to be 12.5 just once a day then it became apparent that I needed to increase my dosage. I am on my 3rd cardiologist, hopefully he will figure it all out!

Hello all! My question is when one has the racing heart and high bp at the same time, will it eventually become lower on its own or only with medication? I get so overwhelmed when my heart is racing and my bp gets close to 200/130. I feel as if I am going to just fall apart. I sometimes have to take a "second" pill just to get it under control. I don't know how to deal with the situation when it occurs. I try to lie down but then I can't breathe.

Thanks!