I am a 30 yr old female. Have had symptoms since childhood. Plus major sleep disroder, peripheral neuropathy, etc. I have been on Mestinon 180TR for a couple years, plus trazadone 150 & lunesta for sleep.
Lately, I need to vomit as soon as I get up from bed, even after sitting up first. Last few days I am very symptomatic. And variations in hr/bp are greater than normal.
Any idea if this constitutes an emergency, or should i let it go? Lying down measures 113/76 heart rate 85, standing up for just over 1 minute BP 118/98 heart rate 154. Reads are high past few days, I normally don't check but feel quite ill.
My heart rate norm goes up 30bpm, not 70. I feel pretty awful. But will ER know what to do anyhow? I am trying to set up appt with new local doc to see what he sayd this week. But just wondering if I should try ER tonight.
Hi Jerry, Thanks for your reply. It's just that since it's an odd autonomic disorder, I will likely have to tell them to check my pressure & HR standing up.. since they normally only check lying down or seated. When it comes to these conditions, they never seem to know. I don't know. But for me, the rise of up to 30 BPM upon standing is normal for my condition. It;s just unusually high these days. Do you have autonomic dysfunction as well? Do you know what I mean with the upright readings? I just don't want to go and have them laugh at me!! I hear so many bad stories about ppl with this condition, and the medical society seems to know very little. Is a heart rate of 154 very high anyhow?
I appreciate your comment. I feel pretty weird and alone :( Thanks so much!!!!
I am so sorry that you are feeling so miserable.
You are so right......the medical community in general seems to be uninformed about POTS. My daughter has it also and although is seeing a Cardiologist none of the meds they have tried have helped her.
Prior to her diagnosis last year she had a 24 hour Holter monitor and her heart rate got up to 165 bpm while she was just laying around. Although this startled me the doctor wasn't overly concerned. It was shortly after that when she was finally diagnosed by a Cardiologist.
I now believe that my daughter has the hyperadrenergic form of POTS as you do. Her symptoms do vary at times and she is currently unable to go to school and is on 'homebound' program. I am wondering what type of doctor you normally see for this condition. I am trying to find a clinical trial or a physician who specializes in this form of POTS for my daughter to see.
The ER may be able to give you some meds to help with the vomitting but I don't know if they would be much help otherwise.
I hope you get some relief soon.
Please keep me posted....
Thank you so much. You are very sweet. btw, I miss typed my age, I am 39! Anyhow, yes, I think I decided to skip the ER. It is pointless. I just know my numbers and it is just unusual for me. I had been homebound for decades undiagnosed. Where are you and your daughter? How old is she? You need to see a neurologist who knows autonomic disorders. For the hyperadrenergic version, I was given mestinon from the Mayo Clinic. It has helped and I was able to start to work again. But how is her sleep? I have a maor sleep disorder as well. Has she had nerve conduction studies done? We tend to have some neuropathies as well. A good neuro can advise. Have you checked the doctor list for your state from ndrf.org or dinet.org? I don't believe a cardio is the best one to treat this. Plus make sure all your bases are covered, incase she has other health issues.
I am used to this unfortunately, just panicked, but maybe this is a flare up or something. I use to pass out often and seize and all the other stuff that comes with these conditions. Since having sleep study and auto studies, my symptoms are more manageable. But the fatigue persists. Basically now it is just dizziness, weakness, heavy legs, eye issues, nausea, fatigue, leg pain, etc., and I need to pace myslef. But please look into docs and find her a good one. If you are in NY I can tell you who I've seen if that helps. Has she had her catecholemines tested for the hyperadrenergic form?
Good luck to her and best of luck. Thank you for posting about my question. :)
I am 45, my mom is 72 and my daughter is 17. My mom and I believe we also have this as well based on various symptoms on and off throughout our lives....just a lesser degree than hers.
We would all three be willing to participate in a study if we could find one. We are in Texas (just North of Houston). There are a few doctors listed in Dallas and other areas of Texas.....I will send an e-mail to inquire with them. It is just so frustrating! I asked her Cardiologist last time about the test to verify the hyperadrenergic form. At that time he decided we would admit her the next morning to get other doctors involved....Neuro, Endocrine, Internist, etc. Then the internal medicine doctor decided she wanted to run tests that were very specific timelines and she felt more comfortable doing on an outpatient basis in her office. All of her tests came back negative and she ran MANY. She also did a chest x-ray and thyroid Ultrasound as it felt slightly large but it was negative too.
Her symptoms are mostly extreme fatigue.....she sleeps at night and doesn't usually get up until after noon. She has dizziness.....at times everything goes black and she can sit down before passing out as she can tell it's happening fortunately. She does have visual disturbances at times too. Heart palpitations, cold and heat intolerance, hot flashes, nausea, breathing difficulty, occasional vomiting, etc., etc. She too has to pace herself if she does go anywhere as she usually 'pays for it' later in exhaustion.
The internal medicine doctor she was sent to did want her to do a sleep study but my daughter is just so tired of pointless studies.....talking to a different Cardiologist for my recent pre-op clearance he didn't sound to hopeful that it would do any good. After what you said maybe it would be worth a try after all.
That must have been terrible going through seizures and all for you!
She doesn't have problems getting to sleep......just extremely difficult to get her up as she is so fatigued....especially in the morning. Her home bound teacher comes in the late afternoon which works out well.
I appreciated all of your suggestions.......I will be doing more research for Neurologists who specialize in dysautonomia. I did take her to one prior to her being diagnosed because she had started having severe headaches. He took one look at the Holter Monitor report and said she must have a congenital heart issue because 20% of the 24 hours her heart rate was tachycardia. (She does have mitral valve prolapse...as do I.) He is the one who referred us to cardiology.
thanks again and please keep me posted.....I will do the same and thanks so much for your suggestions!
Well, sleep disorders often overlap autonomic disorders. But it is amazing she can fall asleep. I was always a fierce insomniac. But also could not get out of bed. But it is better to have all the info anyhow. It is a pain to do the study but for me it was critical. I would suggest you find an autonomic testing lab. She has to have her catecholemines tested with an IV, resting for a half hour, then standing, blood is drawn to check these levels. That's the definitive test apparently. I also have an enlarged thyroid. There are so many weird things with our systems. But go and join or read the boards/ forums at ndrf.org. You can read all about everyone's problems and the doctors they have seen. Can you get to nashville tennesee? I hear Dr. Robertson at Vanderbilt is very good. And of course the infamous Dr Blair Grubb in Ohio has a great rep. I went to the autonomic lab at Mayo in Rochester with Dr Low. It was fine and they did all the appropriate testing there. But in terms of aftercare you need a local doc. Plus it was a fortune. Also this form of pots is thought to be genetic. My mother used to have symptoms as well. Minus the fainting. I can also sense before I pass out, but it took a lot of years before I could catch myself! I got a nasty concussion once!!
Do you really want to be in a study? Again those websites will have links to studies. Also, you can contact Dr Juian Stewart. He does studies for adolescents here in NY and is a wonderful man. Studies are ok, but then you become guinea pigs for the meds, and might be on the placebo and have no recovery. Look it up, but think about it. They offered me a study at Mayo, but when i could just get a prescription right away, why wait and suffer longer? I was too desperate to wait. But that was in my case, maybe diff trials work differently?
Focus on finding a very good and compassionate doctor, whoever they may be.. as long as they are willing to give you referrals to the specialists you may need. Basically the run of auto tests I did at mayo were as follows.. as I can remember... poor memory is another symptom!! :
Tilt with electrodes
Nerve conduction studies, not too fun (but very important for checking for autonomic neuropathy's)
Sweat testing.. in a big plastic hot bubble!
heat testing/sensitivity to heat & cold
IV Catecholemine bloods
24 hr urine
i think that was about it... but those are the kinds of things they check out. And in my case, my sleep study was done seperately here in NY at an earlier date. I had varying results on the nerve conduction studies, but will see if i can get this new doc tomorrow. He does testing as well. I have some peripheral neuropathy, but that has yet to be addressed.
I know her symptoms well.. it is no fun. Especially on the bad days. Tell her not to give up. You have to scour the earth to find those who can help us sometimes... but it is worth it. But really, you need to focus your energies on finding a specialist. They know the things they are looking for in our cases. There are many common threads. Oh and bladder issues as well... fibromayalgia, it is unending. but a specialist already knows what to look for... so find someone who knows 'us'.
Living with chronic illness is a battle. But there are things that can make it easier, What meds is she on? Does she use the compression hose, drink lots of water and salt? Those are the basic recommendations (but I don't use the hose).... Again, read the forums. They are REALLY helpful!!!!
Good luck with everything and please write if you have any questions.. best of luck :)
and remember to use those websites... there is valuable information there... especially the doc list. some aren't so great, but some are wonderful.... :)
Thanks so much for all the information! I have been researching this since the end of last February when she was finally diagnosed. She did see one of the mystery diagnosis episodes that pertained to POTS (after her diagnosis) and was shocked to see it on. They did do 24 hour urine and a slew of other tests while in the hospital including the tilt table test. The last internal medicine doctor ran dozens of blood tests checking for adrenal and endocrine issues as well. Honestly I think the most compassionate one she has seen it the nurse practitioner who she sees from the local internal medicine group.....she has at least made more of an attempt to read up on POTS and prescribe Cymbalta to help with the Seratonin levels. Interestingly I am also on Cymbalta and have been for a couple of years. I just had 1/2 of my thyroid removed 2 weeks ago as there was a 2 cm nodule that was uncertain (turned out not to be cancer but was the type that continues to grow). Some of my symptoms could have been related to that but I do have (and had worse at times in the past) symptoms that i believe are POTS related.
The only reason I mentioned a clinical trial for all of us is just to help to see if hers is hereditary. I have read some articles by Dr. Grubb and he is awesome! The NP also looked up his article. I found one in October that had a table of meds that are and are not helpful for various types of POTS. Every medication that has been prescribed for my daughter by the Cardiologist are NOT helpful for the hyperadrenergic type of POTS. I took that article to the Cardiologist at her followup appt. last month and wanted him to do the catecholemine tests to verify the type of POTS. That's when he suggested admitting her.....he did state that they had done so many tests when she was previously admitted but never specifically stated if that was one of them. Now I am starting to wonder. I guess I should just request her medical records from him and the hospital so I will have them to take with her to whoever she sees. Maybe the NP can run the necessary tests in their office as they have a lab also.
I will print out your suggestions as I continue trying to find a way to get her some help!
Interestingly I have wondered many times if I had chronic fatigue as I do experience symptoms of that as well at times......as well as aching and all....feeling like I am coming down with the flu only it goes away without other flu symptoms.
I really appreciate all of your help!!!!! It really is so frustrating trying to find doctors who will listen and actually help!
thanks again and keep in touch......and good luck with your appointment!!!!
I should have answered your questions......no she is not on any meds at this time....other than the Cymbalta which is listed on Dr. Grubbs table of meds that ARE helpful for the 'H' form of POTS. She had been prescribed Florinef, Metoprolol, and Midodrine none of which helped her. (Those are all on the table as NOT helpful for the 'H' form of POTS.) She also had taken Ritalin which did help with concentration as she took finals at the end of last school year, but doesn't seem to help with the other symptoms. (It is supposed to help with vein constriction in the lower legs thus help prevent the blood pooling.) I had been buying so much high sodium items (really reading labels pretty much the opposite of what most people would!) She does try to drink lots of water and when she was going to school she would bring gatorade and a couple of bottled waters to drink while in class. The sodium didn't really seem to help and I did notice on Dr. Grubbs table that high sodium is not listed as helpful for this 'H' form. Being dehydrated really does aggravate her symptoms as once we went to a clinic just to get IV fluids....when she finally called me from school (the last day she went at the beginning of October) she was admitting 'defeat' that maybe she really did need IV fluids. I had been concerned because when she was at home not able to get up in previous days she wasn't drinking enough fluids (since she was sleeping so very much during the day). The compression stockings really didn't seem to help her much either.....although she would only be able to wear those in the winter here and it's not cold enough much of the time then.
As for Vanderbilt I looked at them but they don't see patients under 18. She will be 18 in March so if we are still trying to find some relief by then we may just have to look at that. I did contact someone in New York (I can't remember name of place at the moment....another symptom:) ) Anyway they do see patients her age but now that I feel it is the 'H' form I really want to find out for sure of that first then go from there as to finding a doctor to treat her or a clinical trial that does testing to distinguish the different types. some of them do testing having to do with blood flow and constriction and things like that....not necessarily just trying a drug vs. a placebo. I wouldn't want to do one of those types of studies. I guess I just need to find someone to do or order the necessary tests and go from there.
thanks again for your help!!!!!!!
please keep me posted and I will do the same.....
Hello Lynn--I was just looking at articles on the internet and I came across this....just wondering where I can find the table that Dr. Grubbs wrote. I was diagnosed with H form of POTS a few months ago and I'm living in a nightmare right now. It would be nice to talk with someone that is experiencing the same thing. It seems like no one understands.
Hi. I just read, the other day, Lynn's post about POTS and looked it up. I certainly have most of the symptoms. Never connected them and neither did my cardiologist. I don't have hot flashes. I get, what I call, nighttime nausea. It seems like every time I get tired, nausea accompanies it. I have terrible foot and leg cramps, too. AND a whole lot of the rest of the symptoms. I've been on atenolol since I was 30 and am wondering if this has masked the HR problems. I don't think anyone will do any testing. They think I'm crazy because I have so many symptoms that I've gone for over the years. Why don't they ever try? I have managed to live a fairly normal life, but I know if I lie down, I might not ever want to get back up. I try to exercise but I am SURE it is harder for me than others. People just think I'm too lazy. It is disheartening, to say the least. I read that POTs people can have low blood volume. They must drink more water than others and sometimes take sodium supplements to help retain some. I NEVER get thirsty, nor to I ever eat salt. I don't like it. I wonder if this worsens my symptoms. I forced myself to drink a lot yesterday, but I still got leg cramps, because I have to go to the bathroom. It just doesn't stay. I need a salty snack!
I'm sorry I can't write more but I'm at work at the moment.....will post again this evening.
There is alot of sodium in almost everything....start really reading labels closely as you can find sweets and everything else you can think of with alot of sodium in it.
Sodium is not helpful for the Hyperadrenergic form, so don't bother if that is the kind you have. That is what my kids and I have. The cardiologist kept telling my daughter to drink more fluids and increase sodium but it didn't help. I finally figured out by Dr. Grubb's table that she must have the 'H' type of POTS because none of the meds he had prescribed were helpful for her and the table showed that they would NOT be helpful for the 'H' type.
Here is one article by Dr. Grubb:
I will have to log in from home tonight and try to find the October article and forward it then. I can't find it at the moment and am at work.
I know what you mean about the doctors thinking you are crazy.....we went through that with my daughter too. Thank God for this internet site which has been so very helpful. The internet is also amazing to actually be able to research these things!
As for the leg cramps.....if they are in the calf like 'charlie horse' type then potassium pills can help.....bananas also help.
I sometimes feel achy....almost like I am getting the flu....but then it goes away a few hours later or by the next morning.
RNRita if you think your symptoms started a long time ago then yours may very well be the Hyperadrenergic form.
My mom also has this 'H' form and she has taken sudafed every morning for many years. Go figure.......it is listed on Dr. Grubbs list as helpful for this form of POTS. I have taken blood pressure medication for more than 8 years and I too wonder if that may have affected my symptoms. I have had headaches/dizziness/nausea and other symptoms as long as I can remember. it is only through my our search for answers for my daughter's symptoms that I have come across all of this leading us to believe that we all have this hereditary form of POTS. My mom (age 73), myself (45), my niece (33), daughter (17) and son (16) all experience these symptoms.
The 'H' form tends to include sleep disorders as well as neuropathy. I have a sensation (occasionally) of something hot or cold dripping on my arm or leg but nothing is ever there. I also have numbness/tingling of arms at times and have always had cold feet and cold nose in winter time. I have sleep apnea and have recently started using a CPAP machine to get a more restful night of sleep. I knew that I snored but had no idea that I stopped breathing until I had a sleep study in December. It indicated that my sleep was interrupted 25 times from snoring and 76 times from sleep apnea!
It is important to keep hydrated. My daughter and I both take Cymbalta which helps because this form of POTS tends to have low seratonin levels. Birth control pills are also helpful.....perhaps because they increase blood volume.
I suggest you do as much research as you can and print out articles to take to your doctor. I was told by someone else on this site that a neurologist.
Kallie since you have been diagnosed already are you being treated by a Cardiologist?
Rita since you haven't been diagnosed I would suggest that you take your blood pressure and pulse laying down; again sitting up and finally standing up (within 10 minutes of standing). Write these down in a notebook indicating the position you were in for each reading. You can take these to your doctor and maybe he will be willing to send you for a tilt table test (electrophysiologist/cardiologist). An increase of 30 beats per minute in pulse from laying down to standing can be indicative of POTS.
It is crazy how many symptoms this disorder can cause. Looking back I have had so many symptoms that are related to this very strange disorder.
If either of you (or anyone else) have any questions please feel free to send me an e-mail... it really helps to share experiences with others....symptoms as well as what may have helped with the symptoms.
take care and good luck in your searches for answers!
p.s. There is a forum on this site for "Dysautonomia" which POTS falls under....it just doesn't seem very active.
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