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.
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.
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!
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.
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.
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....
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.
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?
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!
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.
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
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.
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.
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!
I guess I can say I was blessed in that after having a 48 hr holter test the cardiologist referred me to his EP partner who specializes in POTS. I was actually surprised that the cardiologist suspected POTS as with the short research I had done I was sure I had IST. The EP however gave me an inconclusive diagnosis of either IST or POTS but is leaning towards H POTS. The more I have read about it the more I can see myself in the symptoms.
So after all that rambling here is my question; the EP wants to start off conservatively with an exercise program based on research of 30 min 3 x a week getting heart up to 152. Is this all that helpful for H POTS? And while I am trying this experiment how am I supposed to handle my ever increasing difficulties with working?
Sorry about my rambling..
I've run across a physical therapist who seemed eager for me to be on the treadmill, though I told them of my orthostatic intolernce and wound up light headed after coming off of it. I got my heart rate up to her goal while she had someone watching me to make sure I was okay. I was not so eager and didn't go back. I had another person some years back (who was doing a stress test on a treadmill) say to me "I wouldn't go out and joing a gym tomorrow.) I have walked at a fairly easy pace on a treadmill here at home, but more recently, for right now, when I walk for exercise, typically walk around the house.
Basically, I think the main idea is not to get so deconditioned that your orthostatic intolerance (if that is what you indeed have, seeing as how the EP isn't sure) gets even more pronounced and worse.
I'm no doctor, but personally, since my heart rate has gotten up even higher than 152 just by standing up from sleeping without sitting on the edge first, I wouldn't think you need to get overly concerned about trying to get your heart rate to 152, unless the EP feels your heart is deconditioned? Walking the half hour three times a week, even if you feel it necessary to do it at a leisurely pace if you are getting winded and perhaps sweating can be a good thing.
My heart is considered in fine shape and reacts quickly to, what I assume from abnormal levels here and there, catecholamine stimulus. My body actually can overcompensate with the orthostatic problem with spiking my blood pressure with standing.
And, if he is not sure IST or POTS, an electrophysiolgist specializing in POTS should know how to differentiate the two, if anybody does. Of course, I think it is possible to have both.
I was diagnosed first with IST and secondly with POTS. IST, inappropriate sinus tachycardia, can happen whether you are resting or in an upright or standing position. It is not dependent on your position.
My POTS diagnosis was made by an EP by conducting a tilt table test, which demonstrated my heart rate climbing to a level that indicated I had that form of orthostatic intolerance.
An article by a POTS researcher Dr. at Vanderbilt University in Nashville states that another test (which I have never had, but believe I do have hyperadrenergic form of POTS) in diagnosing POTS is a standing plasma norepinephrine test. That norepinephrine level has to rise above a certain level in addition to heartrate climbing over 30 beats a minute with standing for the diagnosis.
If you don't have a more severe case than mine, while there are still difficulties with my situation, you learn to make little adjustments in habit that help you to function better, but I think it depends on severity of symptoms and your job as to how to function with your condition.
If you are passing out, as some do with POTS, or have a job where you have to get up quickly to perform assigned tasks rather than rising slowly from a sitting position, or have a job where you have to reach above your head a lot and your vision starts to leave, you might consider trying to file for disability (if you are fainting) or looking for a different kind of job.
Thank you for you response. I didn't realize you could have both IST and POTS.. The EP I saw is supposed to be a specialsted in POTS so I thought It odd that he didn't do or suggest anything in the way of testing other than taking my BP laying down and standing up.
As far as work go my major issue is that I am an occupational therapy Assistant at a rehab nursing facility which is a very physical job. I find myself exhausted before the day is half through, pushing a patient down the hall feels more like running up stair half the time. I frequently am flushing and am short of breath.
I also happen to be the one who provides health insurance between my husband and I. I took a medical leave of absence this past summer due to fibro symptom flare ups and stress and am now going to take another for this and fibro.
I plan to try to use the time to de- stress as much as possible and focus on building an exercise program.
Thanks for listening.
He didn't even take your pulse? What did your blood pressure do? Sounds very remiss to me and not at all satisfactory that he did no more than that! Yes, that is a physical job!
I probably shouldn't even talk of this, you being in the specialty you are, but just in case it might give you some ideas....
You probably are getting much better pay than this job, but I once had a job as a medical unit secretary in a skilled nursing facility, which was a lot less physical than your job. Are there any openings for a less active position that you could transfer to. still try to help patients in some way, and keep your insurance? I know with an HMO I worked at in an administration building, they first posted any available jobs to internal applicants who might want to change positions before advertising to the public at large.
With the exercise program- you might consider recumbant bicycling to build up your calves and avoid the tachy of the upright position for awhile as part of your work out (along with walking). Pumping the calf muscles might help some when you go to stand up, trying to pump the blood so it doesn't pool so much.
I think besides the tachy can make a person feel wired, that a person with POTS (at least I do) can find stress, even happy stress, can extremely easily trigger a flushed face because the body is hypersensitive with all those catecholamines being emitted so much trying to prevent the passing out.
I have two siblings diagnosed with fibro, and with that in addition to your dysautonomia, I really do think if you could find a low stress, more sedentary position than the one you currently hold, it may be helpful to your situation.
It sounds like you have enough going between being stressed out, fibro, and dysautonomia to try applying for disability, but there is the issue of your husband getting insurance through your job.
I would like to know more about what you did to recover. My daughter is quite ill and they want to put her on so many meds. On the saline she is fine, and I I would like the doctors to allow her to continue to have saline while we look into natural remedies. I hope you are still checking this website, learning what you did could be a lifesaver for us.
can anyone please help me find the article referred to several times on this thread about the hyperadrenergic form of dysautonomia that was written by dr grubb. I have searched and cant find any particular article. Im trying to learn more about meds for this form. thank you.
Hi Windy -
I was wondering if you'd be so kind to share where you live and what kind of POTS you have and the name of the doc who treated your pots with IV's. That sounds amazing! I am newly diagnosed with H Pots and still searching for the right physician and treatments. Thank you for any input! Julie in Northern California
Good you mentioned Dr Blair Grubb...renowned M.D. re this illness...esp. Hyper-A POTS...most local docs know very little re this...Dysautonomia Network is huge resource for specialists in your area.
Interesting re Sudafed...probably acts like Ritalin w/ADHA...a paradoxical, or opposite effect.
My son struggles w/HyperA POTS and mast cell activation disease...often related....horrible ....we've tapped into various specialists in the Boston area...have spent 2 1/2 yrs educating many clinicians re this illness.
Dr Grubb also uses Phenobarb when other meds don't work.
Lots of anticonvulsants used for this, or chronic pain...e.g. Topamax, Gabapentin, Lyrica...can have bad side effects...research carefully.
Might try the Sudafed....son has terrible brain fog as chronic fatigue is part of this, as well. Sometimes coffee, one would think contraindicated, actually is well tolerated by him.
Need more education of local professional re this AND more funding - so much goes to the "bigger " diseases....there are millions of people suffering from this who've not yet even been diagnosed.
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