Hyperadrenergic POTS

[Lynn63]

My daughter has Hyperadrenergic Postural Orthostatic Tachycardia Syndrome and I am just wondering if anyone else has this form of POTS.  I would like any input as to what helps you with symptoms as she is having a rough time lately.  

We are just so frustrated because she was doing better after starting Cymbalta and birth control pills as the combination seemed to be helping.  She recently had her wisdom teeth removed and also got the flu and that may be in part the reason her symptoms got worse.

ANY suggestions would be most appreciated!  

thank you,
Lynn:)

[halbashes]

I just wanted to add one comment to these very informative posts.  One commonality in just about every form of Dysautonomia, is that our bodies cannot deal with fevers.  Even mild fevers should be treated with medication, and fluid levels need to be maintained.

The reason I bring this up is that you mentioned your daughter having the flu recently.  Any kind of illness will put stress on the body, and worsen autonomic symptoms.  A fever can make symptoms dramatically worse though, and so I just wanted to point that out.  How is your daughter feeling now?

[Lynn63]

Thanks for mentioning that.  I think the combination of the flu and having her wisdom teeth out just before that really caused alot of symptoms.  She was feeling better and went to school last week and Monday of this week.  Unfortunately she hasn't been able to go again this week.  Her allergies are kicking in right now which combined with menstruation also increase her symptoms.

It just seems that any 'minor thing' to most people can cause so much havoc on people with dysautonomia.  I really hope more research is done in the future to find better solutions so it isn't so disabling to so many!

thanks again for your comments.

take care,
Lynn:)

[nmorgen]

Hi.
I know this is late, but I just found this site tonight. I have H POTS. I also experience my worse symptoms at night while trying to sleep. That's when I have my leg and torso tremors. they can get so bad that others can feel them when they touch me. I guess I turn into a human vibrator. I have to take a vit D and magnesium. From what I can tell a lot of other people with H pots have the same problem. If your Drs haven't checked that you might want to mention it. Also taking chlorpheniramine maleate every 4 hours really seems to help. I am taking clonidine which seems to regulate my pulse and pressure most of time. It still keeps it at non-emergency room levels when I get into a hyper state. As far as getting sick with this disease/disorder, you definately need to stay hydrated. I had a kidney infection in Nov '08 and had serious blood volume problems. My feet and toes would turn completely white and numb. IV fluids are great at increasing the blood volume and make recovery a lot easier. You may want to discuss this with your Dr. There are several write ups about this.

The sad part is that there just isn't funding for H POTS. I wrote Dr. Grubb last year, and he told me that they would be publishing a paper on different types of H POTS that they had observed, but the funding for research wasn't there.

[AireScottie]

I too joined after you posted, but have a couple suggestions.  I take birth control pills continuously because my autonomic symptoms are so out of control during my period.  Low dose ones didn't work though, as they just caused breakthrough bleeding every day, which meant bad symptoms every day.  Also, a lot of the symptoms described by onerider and yourself (digestive, cold drips on legs) might be attributed to peripheral neuropathy.  Your autonomic and sensorimotor nerves are all "small nerve fibers".  Here's the thing: you can get a skin biopsy to check your small nerve fiber levels.  There are a lot of things that can destroy peripheral nerves, and a lot of them can be managed or even cured (Lyme disease, B12 deficiency).  None of the "standard" dysautonomia treatments have made me functional because something has destroyed most of my nerve fibers.  If your daughter continues to be really ill, consider seeing a neurologist about this possibility.  Here's a link with some info from the National Institute of Health: http://www.nlm.nih.gov/medlineplus/ency/article/000593.htm

[Lynn63]

Thank you so much for your suggestions.

Fortunately we have finally found a doctor who really knows about POTS!  He is at Texas Children's Hospital in Houston....Dr. Richard Friedman.  He really cares about his patients and wants to help them....what a breath of fresh air!

My daughter has been experiencing more intestinal issues lately that seem to be IBS.  The doctor wants her to see a Gastro. associate of his that he works with in cases like hers.  We hope to find better treatment options and look forward to her next appointment.

We feel very hopeful at this point!

thanks again for your suggestions and I will keep you posted as we find out more.

Lynn:)

[kelly1258]

Are you still around? Please read my posts.  Your daughter sounds like mine.  Cymbalta and birth control worked for her.