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Do you have tingling or numbness? Or any of the other symptoms of low b-12 such as extreme lethargy? Do you have any neurological problems, such as paranoia or balance problems? I have pernicious anemia. I had the blood test done for that a few years ago because of my lethargy and numbness/tingling in my hands and feet. Mine was so low that if my doctor hadn't ordered the test when she did, I probably would have wound up in the hospital. I imagine your primary care doc isn't ordering the tests, because if you don't have symptoms or something that justifies the tests, your insurance probably won't pay for it, although I don't know for sure. Your primary care doc might be willing to just test the B-12 as part of an annual physical, if your insurance covers a physical. Then if your B-12 level is low on that test, then your doctor would possibly have the justification for your insurance to do the intrinsic factor blocking antibodies test.

Have you tried explaining to your primary care doc that the last time your b-12 was measured it was just barely normal?

They sell B-12 over the counter in pill form, and many people with pernicious anemia take B-12 in the pill form rather than get the shots. My doctor tried to get me to switch to the pills, but I prefer the shots.

Have you tried taking a B-12 pill daily to see if it helps you?

Do you have a neurologist that you see for POTS? They might be willing to order it. My neurologist when I was younger was the one that ordered it for me.

The problem with B-12 shots, if you don't have a b-12 deficiency, is that folate is included in the mixture for the shot. If you take too many B-12 shots, you wind up with too much folate which can cause a lot of health problems.

Do you have fibromyalgia? Some practictioners who treat fibromyalgia are willing to give their patients B-12 shots.

I have been told from my doctors I have a mild form of POTS (due to my holter monitor results only showing mild sinus tachycardia), that my symptoms (GI issues, breathing problems, chest pain, fatigue, dizziness, etc...) aren't symptoms of POTS, and that because I have a mild form there is no way it can be causing interference with my life activities. I was diagnosed with POTS because of a tilt table test. I acknowledge that I do not have a severe form of POTS, because I do not faint, I do not have orthostatic hypotension, I can work full time and can do some life activities (like grocery shopping). I acknowledge that many of you have a lot worse version of this disease than I do, and/or are a lot more affected by it than I am. But even though I do not have a form of POTS that is severe, I do have a hard time doing housework (for example: unloading the dishwasher causes me to be out of breath, have bad chest pain, get dizzy, and feel like I have to sit or I will fall over), going up stairs, walking for long distances, walking fast (for example if I walk fast for a long distance (my chest hurts, its hard to breathe, my eyesight starts to go dark, I get dizzy, and have to sit) standing for periods of time, working 8 hrs a day (by the afternoon I am soo tired, my cognitive skills have drastically declined), and social activities exhaust me after a short time. I also know that at my current state with POTS, that I would not be able to keep up with children. I want to have children, but I am currently unable to run after them (I know this from experience with my 2 year old nephew), pick them up and carry them, and play with them for any length of time as I am constantly fatigued and have little energy.

Therefore I was wondering, whether your doctor's agree that POTS is affecting your life, even if you don't have a "severe" form of POTS?

Kimbellgirl,

I have had an EKG, MRI's of the brain and spine, CAT scans of the brain and lungs, EEG, Echocardiogram, pulmonary function tests, EMG, Sleep study (which showed my sleeping hr to be at or above 100), holter monitor, Tilt Table Test, and lots of blood tests. The holter monitor showed mild sinus tachycardia. The holter monitor said that my resting hr is in the 90s, which doesn't make sense to me as I have had my hr measured in the 60s when sitting. Any idea as to how my hr can be lower when sitting than when laying down? The cardiologist said because of that test I only have a mild form of POTS. The tilt table test showed that I have POTS, as my hr went from the 80s to the 140s, upon standing. . Thanks for the suggestions of tests I should have done.

Unfortunately the Physicians list on this site doesn't show any for WA. I called the UW neurology clinic (as they are the ones who did my tilt table test), and they say they have several neurologists on staff that treat autonomic nervous system disorders. I think I will try to get a referral to one of those doctors. Hopefully they are better than my current doctors. I have dropped my cardiologist, as everytime I ask him any questions, his response to my question is to say you don't have a severe form of POTS, rather than answer my question. When I try to get treatment from him, because POTS is interfering with my work, he says that I don't have a severe form of POTS, so therefore I don't need treatment; not to mention he dismisses all my symptoms and says they are not related to POTS (like my chest pain and breathing issues). Which is causing me to get stressed, because the reason I went to him was to get help, so that I can be more functional. I also stopped seeing the doctor that diagnosed me with POTS as it is obvious he doesn't know how to treat POTS, as he won't even offer a form of treatment other than florinef. Florinef didn't work for me. That doctor also suggested I find someone else to treat me. I just wish it was easier to find a good doctor.

Rissy2D,

Thanks for the link and the name of the beta blocker.

My disease course started with a gradual onset, and is currently relapse/remitting with progression.

AllAboutPeace,

I am interested to hear how your electrophysiologist will rule IST out.

AllAboutPeace,

What tests should I ask for so that I can see if I have IST or not? I had the tilt table test and that showed that I had POTS (as my heart rate raised from the 90s to 140s within a few minutes and I had the sweat test that showed that I don't sweat excessively. I also had the catcholomine blood test.

Thanks.

Yes, unfortunately this is normal...you may need something to help you sleep, and decrease your heart rate. Do you have a good autonomic disorders doctor? I have sleep apnea in addition to dysautonomia, and take Klonopin and sometimes ambien, so I can sleep, and I am on a beta blocker, bystolic for my tachycardia. Hope you find what works for you. It's terrible when you can't sleep; believe me, I know

Unfortunately, I don't have a good autonomic disorders doctor. I have been trying to find one in Washington state. Heard of any good ones? My doctor diagnosed me with POTs but it is obvious he does not know much about it or how to treat it. He also said he would not help me with my sleep. You are fortunate you found a doctor willing to help you with that.

Wow, so sorry to hear that . As PotsyTurvy already mentioned, a high resting heart rate in addition to POTS like symptoms could indicate Inappropriate Sinus Tachycardia (which is another form of dysautonomia). IST seems to be even less common than POTS. My sister actually suffers from this and has had good success with a very old beta blocker that they hardly use anymore (I forget the name of it, but I will find out).

I have the hyperadrengergic form of POTS. There are a few different theories about IST and HyperPOTS. Some doctors believe that it is actually different manifestations of the same disorder, while other doctors believe that they are different, but call them "sisters" because they have many similarities.

The differences between my sister an I are :

• I have a very low heart rate when sleeping, while she has a high one.
  
• My heart rate increases dramatically every time I stand up, while hers seems to remain high all the time.
  
• She does not seem to have some of the other symptoms that I do, such as Raynauds, vertigo, venous stasis, and she has never passed out.
  
• She does not seem to need to drink / pee as much as I do
  
• She is able to tolerate beta blockers (I am not) and she has definitely been helped by them!!
  

The similarities are:

• Both of our heart rates increase inappropriately to what we are doing (for example going up the stairs).
  
• We both have IBS, EDS, endometriosis, dizziness, chest pain, and fatigue.
  
• We both respond well to eating more salt.
  
• We both had an acute on chronic onset -- mild symptoms all of our lives, but dramatically increased in our 20's.
  

Again, I am just going off of a personal experience, and really cant give you much more information than that. I am still waiting to meet someone else with POTS and IST in the same family . Obviously there is a genetic component to it.... not sure exactly WHAT though.

I hope this helps in some way....

***Added later: One interesting thing is that when I was under general anesthesia (so basically "asleep") I was tachycardic the entire time, while my sisters heart rate actually came down. Kind of the opposite to what we normally do!

Thanks, that helps. I think I will ask my cardiologist if it is possible I had IST rather than POTS, as IST sounds more like me, especially since my main symptoms are chest pain, shortness of breath, and gastrointestinal problems. I have never passed out. I don't know if I can still tolerate beta blockers but I used to take them all the time when I was younger as they are used to treat essential tremor.

I haven't had a sleep study done, but my holter and telemetry when I was in the hospital both showed that I was tachy when I'm sleeping. Sometimes I (or my husband) have woken up to find the bed vibrating and then discover that it's actually me that's causing it. At those times my tachy has been quite high.

Have you ever woken with it or noticed it being tachy?

Sometimes it is hard for me to fall asleep because of it, as sometimes I get very tachy when I lay down. I wake up a lot so it is possible that is a factor of what is waking me up although I don't know for sure.

Mine is normally in the 60s. Although it varies quite a bit. When I am sitting it ranges from the 60s to the high 90s. When I am sleeping it is in the low 100s.

I recently had a sleep study that showed that when I sleep I have constant tachycardia. Has anyone else had a sleep study? Did your sleep study or holter monitor show a higher than normal heart rate when sleping? Is this normal for people with POTS?

My doctor said some signs of hyperPOTs are hypertension, tremoulessness, high norephrenine levels and excessive sweating. I have high norephrenine levels, tremors, and some upright hypertension, but my doctor said that because I don't excessively sweat (based on my autonomic testing) I am not hyperPOTS.

My Maternal grandmother has parkinson's.

Florinef made my POTs symptoms worse. After one week on it, my chest hurt worse and I had more breathing issues, than I did before I started taking it. It also made me shake more.

I am not happy with my current doctor, and would like to know if anyone has any recommendations as to a good POTS doctor in Western WA?

The doctor that diagnosed me with POTS, is unwilling to prescribe me anything to help me with my POTS.

Has anyone been treated by Dr Turley, Dr Oakley, or any other neurologists at UW Neurology clinic?

I experience this too.

I can relate to the chest pain. Sometimes I get sharp pains in the left side of my chest that last a few seconds and sometimes I get a dull chest pain that lasts for hours. Pain meds have not helped with my chest pain. I get chest pains when I am laying down, when I am sitting, and when I am standing/walking/running. So I can relate to your chest pain, even when I am not doing anything that is overexerting (like lying in bed).

Note: I am not a doctor, and am simply relaying what my doctors have said to me. Please contact your doctor with any concerns you have about your blood pressure, rather than rely on what I have stated here. My blood pressure fluctuates a lot during the day. Even within minutes, it fluctuates quite a bit (in my opinion). I was told by my neurologist that It is normal for BP to fluctuate, as many factors can affect it. He said the only time I should be concerned about it, is if my blood pressure stays constantly elevated. I would ask your doctor about it, just to be sure. Did your tilt table test show the big fluctuations? Mine showed my blood pressure change from 117/60 to 144/95 within a couple of minutes of laying down. I don't know if my change from 117/70 to 144/95 is a big fluctuation or not in that amount of time, but to me, it seems like it is. I asked my cardiologist about my blood pressure fluctuations that showed up on my tilt table test, and he said he would get back to me, as to whether he thinks its a cause of concern, once he has had a chance to review the tilt table test. I don't think I feel the fluctuations. If it concerns you and you decide to see a doctor about it, it might be worthwhile to take your blood pressure at the same time, a few times a day (say in the morning before you get up, and various other intervals during the day, and a few like 5 - 10 minutes apart), for a few days/weeks so that way you have "evidence" to show your doctor about your concerns. Here's an article that talks about blood pressure fluctuations: http://www.latimes.com/features/health/la-hew-askus2jul02,0,7880597.story

I get pain in my legs (while laying down, sitting, standing, walking, etc...).In my case, this is usually due to muscle spasms.

I recently saw a cardiologist (Electrophysiologist) about my POTS. He said that my breathing issues and chest pain are not related to POTS, as those are not symptoms of POTS. Is that true?

Can chest pain and breathing problems be related to POTS?

Also, he said that my holter monitor test showed only mild sinus tachycardia, thus he said I have a mild form of POTS. Is it possible to feel horrible from POTS, even if the holter monitor doesn't show it? Or to feel like you are highly debilitated from it, even if the tests show you only have a mild form of it?

I don't think the holter monitor test accurately represented my POTS, because the day I did it was a fairly good day for me. Has anyone else felt their holter monitor test did not accurately show their POTS, or debilitation from POTS?

For example, I get bad chest pain, shortness of breath, temperature dysregulation, fatigue, and weakness, along with a few other issues, yet even though I experienced fatigue, shortness of breath, and chest pain when doing the test, the test still showed minor tachycardia.

I was diagnosed with POTS by a tilt table test. It was the chest pain and breathing issues that led to the tilt table test.

I guess my main question is: is it possible to have symptoms that don't match up with your heart rate and/or blood pressure? Or in other words is it possible to feel absolutely fatigued, or out of breath, chest pain, or dizzy even when your heart rate and/or blood pressure are only slightly tachacardic?

Thank you for any answers you can provide to my questions.

I did pulmonary function tests to check for Asthma and other breathing issues. I did not have them done at an autonomic lab. These tests were done by a pulmoanry doctor, before I learned I had POTS. It was determined I did not have Asthma. My POTS doctor says that my breathing issues are most likely related to my POTS.

I got a night guard from my dentist. My dentist told me it shouldn't hurt to wear it. At first it did, so I took it back and they did some work on it to make it fit better in my mouth. Once they did that, it no longer hurt to have the nightguard in my mouth. Perhaps your mouth piece isn't fitted right?

If I may ask what type of urine tests were those? I think I will ask my doctor to order those.

If I may ask, what makes your doctor think you are chronically dehydrated? by blood tests?

I am always thirsty. I drink at least 10 glasses of water a day. I also have to go to the bathroom all the time, usually within half an hour of drinking a glass of water. My lips are chronically chapped and bleeding. I get headaches if I drink less than 6 glasses of water a day. My urine is almost never clear, usually a medium yellow. If I don't drink enough, it hurts to pee. I told my doctor that it seems like I am chronically dehydrated. My doctor says I am not dehydrated because my blood tests would show a high level of sodium if I was, and I have a normal level of sodium.

I am sorry to sound ignorant, but how does saline help? What does it do to help? I have seen many people on this forum say it does wonders for them. Does it only help with people who have low blood pressure?

I agree with Rissy2D and Thankful, if pain meds are not helping your pain, there is a good chance your pain is a neurologic pain. Have you ever seen a neurologist?

kcmom,

I have myoclonic jerks, essential tremor, dystonia, a tic disorder in the neck, and a parkinsonism tremor. I also have been diagnosed with Joint Hypermobility syndrome. I have been seeing neurologists since I was a child. My myoclonic jerks started when I was a teenager. None of my neurologists (I have seen quite a few), including my movement disorder doctors feel that the movements (the jerking and tremor) are in any way caused by autonomic dysfunction. They feel my autonomic dysfunction is caused by the same thing causing my movements. Hyperadrenergic pots can cause tremulousness but has not been tied to myoclonus. In my opinion, it may be helpful to get your son seen by a movement disorder doctor, not a regular neurologist. A regular neurologist may not be able to distinguish your son's movements and thus may not be able to help your son get the treatment and testing he needs. I don't know where you live but I saw some movement disorder doctors at Seattle Children's hospital and UC Davis when I was a teenager. If you don't feel comfortable with the doctor's at Mayo, then perhaps you could take him to a children's hospital that has a movement disorder doctor. There are not that many disorders that cause Myoclonus, however most of them, can possibly have very negative effects on one's health as they get older, if not properly treated and diagnosed. Unless your son's movements were caused by a birth trauma.

Clonidine probably helped your son's jerks for a time as clonidine is a medication used to treat tic disorders. However most people with movement disorders will be able to tell you that a medications effectiveness wears off over time, thus the dosage needs to be increased or a new medication tried.

Some doctors dismiss movement disorders when a patient already has an autonomic dysfunction. Your son's autonomic dysfunction may be caused by what is causing your son's movement disorders. If your son truly has myoclonus and not tics, it may be a good idea to get your son seen by a movement disorder doctor. In my opinion, he may benefit from getting seen by one either way, just so that he can get the help he needs. Some adult movement disorder doctors will see teenagers if there are no pediactric movement disorder doctors in the area.

Do the jerks come and go? Are they around all the time? Has he had the jerks and the tremors for years? Did they start at the same time? Does he have tremors when resting or only when moving? Are you sure your son has myoclonic jerks and not tics? The reason why I asked this is because clonidine appears to have helped your son's movements. Also, because if your sons jerks come and go, even when not on clonidine (meaning he is not always jerking) it could be a tic disorder. My tics come and go. I have myoclonic jerks all the time. A lot of doctors and people will confuse tics and myoclonus. If your son can feel them come on, or temporarily stop them, then it is most likely a tic disorder and not Myoclonus. Myoclonus is a rare movement disorder. Tics are common. It is also possible that your son has chorea, or any other number of jerk-like disorders, instead of tics or myoclonus. A movement disorder doctor may be able to tell the difference.

By the way, your son most likely shouldn't be taking Focaline anyways, as it is contraindicated in people with movement disorders, especially tics, and thus can and probably is making your son's movements worse. I would suggest asking your son's neuro or movement disorder doctor (if you see one) about whether your son should continue with that med. It might also be playing havoc with your son's autonomic dysfunction. For example, when I was taking Flexeril (bad for people with autonomic dysfunction) it would make my movements worse every time it wore off.

It is also good to have your son see a movement disorder doctor as you will find that many many meds will make your son's movements worse. For example, florinef made my movements worse.

If that doctor is a good one they will help you find a set of meds that work best for your son.

ANNA,

I am surprised that they are tying your myoclonus to your EDS. Have you seen a movement disorder doctor or just a geneticist? Who diagnosed you with myoclonus? Your geneticisit, Primary care doctor, or a neurologist?

Peregrine:

Autonomic Dysfunction has been linked with Joint Hypermobility Syndrome and Ehler-Danlos Syndrome (including the hypermobility type), so your neurologist is not wrong in thinking your autonomic dysfunction could be tied in with your hypermobility.

Another thing to take into account, is not all doctor's know about all the effects hypermobility can have on a person. An interesting article to read is: Joint hypermobility syndrome: a complex constellation of symptoms. which can be found at www.jointandbone.org.

Specifically, this paragraph: "New research has identified associated neurophysiological abnormalities resulting in chronic pain [7], joint proprioceptive impairment [8, 9], resistance to the local anaesthetic effects of lignocaine [10], autonomic dysfunction [11], and psychological distress [12]. The latter, combined with a wide array of musculoskeletal and visceral problems may result in a serious reduction in quality of life [13]. This complex constellation of problems presents health providers with major challenges, yet rheumatologists remain largely unaware of the significance of hypermobility and its impact [14]."

Another article you might be interested in is: "The lack of clinical distinction between the hypermobility type of Ehlers–Danlos syndrome and the joint hypermobility syndrome (a.k.a. hypermobility syndrome)" by Rodney Grahame.

An interesting powerpoint from Dr: Pocinki: Clinical Autonomic and Sleep disorders in the Joint Hypermobility Syndromes: http://www.ednf.org/images/2010conference/Handouts/Pocinki_ppt.pdf

If I may ask, why are you skeptical of hypermobility and autonomic dysfunction being linked?