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:)

[onerider]

I'm sorry to hear your daughter is going through a rough time.  You are correct in assuming that the combination of having her wisedom teeth removed and then getting hit with the flu, has likely triggered an increase in symptoms.  People with hyperadrenergic POTS seem to experience an increase in symptoms when any event occurs that causes an even greater release of norepinephrine.  I am relatively newly diagnosed (Oct 08) and still trying to thoroughly understand the syndrome so I'm no expert but I've found on days when my symptoms are REALLY bad, it is best to stay very well hydrated, keep meals small but frequent, rest in a reclined position (not lying down....just makes matters worse when it's time to get up again), and no matter how exhausted, dizzy and sick I feel take several short walks...even if it's just two minutes at a time.  

She needs to be reminded there will be better days ahead and to just live at her own pace right now.  

I hope she's feeling better soon.

Take care.

[Lynn63]

Thanks so much for your response!  My daughter was diagnosed a year ago with POTS.  In the last few months we figured out that it is the Hyperadrenergic form.  My mom (age 73), myself (45) and my niece (33) all believe that we have it as well.   Our symptoms have not been to the extent of my daughter's.  

My mom takes Sudafed every day and has for many years.  (This is ironic because it is mentioned as a drug that can help with this form of POTS in an article by Dr. Blair Grubb.)  I take Cymbalta which is also on that list (although I have taken it for a couple of years.....before I even heard of POTS).  It helps with the low seratonin levels that this form of POTS causes.  I have always had headaches and dizziness of varying degree... or at least since my teenage years.  I often have fatigue as well....sometimes really have to push myself.

Are you taking any medications?  Do you see a doctor for POTS?  The reason I ask is that my daughter had been seeing a cardiologist who had been prescribing different meds for many months (none helped her).  As it turned out those meds are not helpful for the 'H' form of POTS (per the table by Dr. Grubb).  I brought the information to him and my suspicions that this was the type she had but he wanted to run more tests because he thought it was something else going on in addition to POTS.  He really didn't even acknowledge the 'H' form of POTS at all.

It has been very frustrating trying to get her diagnosed and even trying to find a doctor who can help.

I see you are from Canada.  My husband is from Ottawa.  It is a very nice area.  Do you see a specialist?....what type of doctor do you see?

Do you have any sleep disorders?  I was told by someone else on this site that this is also common to people with the hyperadrenergic form.  I have sleep apnea and recently started using a CPAP machine.

sorry for all the questions.....it's just nice to talk to someone with the same form of POTS!

thanks!
Lynn:)

[onerider]

Thank you for sending the article by Dr Grubb.  It was quit informative.  I am now seeing a cardiologist who specializes in autonomic disorders.  He is only one of 4 specialists in Canada so I consider myself very fortunate to have been referred to him.  I suspect many people with POTS probably spend years being misdiagnosed and therefore treated inappropriately.  I spent a year being treated for extremely high blood pressure and a condition called pseudo-pheochromocytoma.  None of the medication helped and I was actually beginning to worry my issues were possibly the on-set of mental illness!  One of my doctors (an endocrinologist) began to suspect an autonomic disorder and I finally found the right doctor who was able to do a tilt table test and confirmed H POTS.

I do not know what has caused my POTS.  There does not seem to be a family history.  I did get a very bad flu a couple years ago and just never felt like "myself" afterwards and the symptoms have slowly progressed from that point.  I also don't know if I have a MCAD that sometimes accompanies H POTS.  I guess there is a lot I don't know but I'm trying to learn.  I struggle with mental fogging, blurred vision, and fatigue so researching this syndrome has been difficult for me.

My medications have been drastically reduced (thank heavens!!!) and I am currently taking Clonidine 0.3/day, Metoprolol 75mg/day, and Topamax 100mg/day.  The migraines have been greatly reduced by the Topamax but my blood pressure is either way too high or it crashes and goes very low.  Mostly it's too high though.  My heart rate is almost always over 100 if I'm standing and gallops up to the 140-180 range with even mild extertion.  I always feel exhausted....no wonder my body thinks it's running a marathon!

As for sleep disorders, I don't know if I have sleep apnea.  I do know I sleep very poorly.  I will often (3-4 times per week) wake up at night with extreme night sweats, pounding heart, and anxiety.  Going back to sleep is impossible because I feel "wired".  These episodes are what triggers my migraines most of the time but the Topamax is helping.

There are numerous other symptoms that occur and I have no understanding as to why: numb palms and toes, nausea, loss of apetite, blurry vision, flushing, memory loss, searching for words, mental fogging, digestive problems, lack of balance, tremors in my hands and legs, sweating for no reason but feeling cold at the same time and anxiety (the anxiety is a major surprise because I am known for being very calm under pressure and now I feel anxious without any identifiable triggers!).  There also seems to be a hormonal link because all this gets much worse before my periods and during ovulation.  At my next appointment I intend to enquire about stopping my periods.

Don't worry about asking me a lot of questions.  It seems we all share the same position in that we have more questions than answers.  It is hard to find someone to discus any of this with because POTS is so poorly understood by most doctors (my family doctor included) and I haven't met anyone yet who knew what I was talking about when I told them I had POTS.

It's poorly understood and hard as hell to live with sometimes.  Not a lot of support....

Thank goodness for this forum but it is only helpful when we're feeling well enough to use a computer.  Our medical practitioners need to learn about this and become our allies instead of just another obstacle for us to overcome.  I think we have enough on our plates :-).

Please stay in touch Lynn and send my best to your daughter.  There's better days ahead.

Take care.

[Lynn63]

It must be really difficult for you as a mom to be going through so much.  I know it drives me crazy trying to research all of this for my daughter's symptoms and I am able to read and all.....just tired a lot which could be related to my thyroid problems too.  I have also had anxiety problems, dizziness, headaches, nausea, mental fogging, digestive problems, can't think of the simplest word sometimes!, weird sensations on my arms or legs (like something cold has dripped on them), cold extremities, etc, etc.

I agree it is very frustrating dealing with doctor's who make you feel like they think it is all in your head.  I think my daughter has had it with doctors.....I am looking for clinical trials that may help but convincing her to go may be another story.  

Neuropathy is common with this form of POTS also.....numbness and tingling, etc.  Also in POTS in general menstruation definitely makes it worse.  My daughter is having a rough week because of that right now.

As for blood pressure fluctuation....my daughter was put on different meds....one was Metoprolol and I don't remember if that is the one but one made her blood pressure drop drastically to the point that in the mornings it was 50's over 40's so she couldn't get out of bed.  

The meds she has been prescribed were Metoprolol, Midodrine, Florinef, Ritalin, as well as high salt intake.  None of those were any help to her......and none of them are on the list as being helpful for the H POTS either.

My mom and I both take Sudafed every day.  I don't know why it is helpful for this form but it is.  We both also take medicine for high blood pressure.

I do remember reading that it is very important to keep your allergies under control as that can worsen symptoms as well.  

Your symptoms sound very similar to my daughter's.  I'm glad you found a doctor who is a specialist.....that's great!  We have a good nurse practitioner/internist group who do read the articles and listen to us which is good.  I haven't taken her back to the cardiologist again.....he wasn't really listening to us.....like when I told him that I was sure that the type she has is the Hyperadrenergic form of POTS.

Anyway, I better get to sleep now......I really hope things improve for you very soon.  I will be watching out for the new article by Dr. Grubb and will send a link when I find it.

take care and keep in touch
Lynn:)

[kbennj]

Can someone repost the article on the H form of pots?  I had a hard drive crash lastweek, and had some saved on my computer, but now they're gone.  I just got diagnosed with mild POTS from a tilt table test.  1 Cardiologist , an endocrinologist, and a family Dr all agree to try diet (increase water and salt) and exercise first, but my cardiologist wants to start 25 mg toprol 2ce a day and florinef.  I am scared to death to take either med.  I suffer from anxiety, flushing, mild dizziness, heart palps, and rapid heart rate anywhere from 110-198.  But it isn't always like that.  It seems to be triggered by my anxiety or a stimuli.  Like going to the Cardio office.  I was nervous so my blood pressure was up 140/79 which for me is high.  I usually run abt 117/68......I am afraid to take the beta blocker in fear it will make me faint from low blood pressure.  The dr wants me to take 25 mg 2 times a day, do you think it would be ok if I started out taking half  a pill in the morning and the other half in the evening  for a total of 25 mg a day?  This beta blocker also helps with anxiety disorders I have read.  Has anyone tried Paxil for their POTS? I have heard alot about cymbalta.  I just hate to get on the drug roller coaster.....any suggestions....

[Lynn63]

This is the link to the article by Dr. Grubb.  It lists the table of meds/treatments that are helpful for the different types of POTS.

http://circ.ahajournals.org/cgi/content/full/117/21/2814#TBL1189801

I really couldn't tell you what you should do as far as meds are concerned.  I do know that Florinef is not something I would be worried about as it just helps your body to maintain proper levels of fluid and minerals.  If you think that you have the Hyperadrenergic form of POTS then salt doesn't help that (according to the table as well as my daughter's experience).  For months we tried lots and lots of sodium....not the healthiest diet.

In my daughter's case they tried metoprolol, midodrine, florinef, salt, ritalin.  I can't remember if it was the metoprolol or midodrine but one of them caused her blood pressure to be extremely low early in the mornings.  (I think 52/45 or something like that.)  We did call the cardio and he had us adjust it taking half and changing times, but it still didn't help.  At the time we didn't realize that hers was likely the 'H' form.

The H form also causes anxiety and I am told sleep disorders are common as well as neuropathy.  Apparently part of the reason Cymbalta helps is because in this form seratonin is lower than it should be and Cymbalta increases seratonin levels.

I don't think there would be anything wrong with starting out with half each time....I don't blame you at all for wanting to take it slow....as in my daughter's case.  The other 'm' medicine that the cardiologist prescribed her was apparently too strong for her and caused her to have goosebumps that didn't go away.  Again we called and the doctor told us to take half but i still had troublesome symptoms for her so she didn't end up continuing that medicine either.

I hope this article helps.....I would take it with you to the doctor.  Hopefully yours will read the information and be open minded to your opinions.

The bottom line is it is your body and you should feel comfortable with the treatment.

take care and keep in touch!

p.s.  I will post an updated link when I find a new article from him.....he had said that he hopes to have another article out in the Spring about 2 subtypes of Hyperadrenergic POTS.

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.

[CHRISTYDRAKE]

Look up the side effects of Topamax.  My son also took it for migraines.  The whole time he was on it, he did not have a single migraine, but the side effects were horrible for him(14 years old).  The searching for words and brain fog are side effects, and being a student these were hard to deal with at school.  He also became much more nauseated.  

[team77]

What helped me in the beginning was getting saline IV's as an outpt at our local hospital.  Allowed me to somewhat function.  I progressed to an integrative medicine MD who successfully treats and controls POTS using Vitamin C IV's.  Don't ask me what all is in it but a bunch of vitamins/minerals.  WORKS LIKE A CHARM!!!!!!  He also added Monavie to my supplements and in 3 months my symptoms are GONE!  I kept a journal with all of the things I tried if you want more information.  I will be glad to help in any way!  POTS is devastating and even my disability dropped me just b/c they didn't know anything about it!!!!!  But, thank GOD I am back to normal and working again.
Let me know if I can help anyone in anyway get through the POTS journey!  
Windy