New member - need advice!

[TinaM]

Hello everyone!

This is my 1st time posting here although I have been reading the messages off & on for the past month.

I would be very grateful if I could get some views as to whether or not I should go through with an appointment that I have with a cardiologist. I live in Alberta, Canada & it is not easy to get appointment's with specialists here(3 months). The reason my family doctor made it, is that my heart rate has been consistently high for about 6 months - he had me monitoring it & has tried various medications but they have no effect on the heart rate (but I experience many side effects). Anyways, over the past few months, I have been looking around on the Internet at the various types of tachycardia & it seems clear to me from the various symptoms that I have that it is the type called POTS. Briefly, my heart rate increases by more than 30bpm when I stand. Sometimes, my vision will gray out & my hearing dimish for a few seconds on standing. But the worst thing is that every night at the same time(2:00am) I wake up sweating buckets. When I get out of bed and stand up my heart rate sometimes rises as high as 180bpm. This may last about 10 minutes or so. Afterwards, I usually can't get back to sleep for 1-3 hours & I usually very tired in the morning.

I also have both endometriosis & fibromyalgia which are both autoimmune related as is supposedly POTS. I have suffered a great deal of skepticism over the past 12 years from the Worker's Comp. Board & many doctors with regard to fibromyalgia. I am still working full time but I can tell you that every day is a huge struggle for me. There is no one at work I can talk to that would understand the pain I suffer daily from fibromyalgia & now yet another problem to deal with?!

I am terrified of the thought of going through yet another bunch of tests that show nothing & having to deal with yet more skepticism from the medical community.

Is there anything effective that Western medicine can do to treat POTS?

Thank you in advance for any advice you can offer!!

[denabob]

I'm sorry but the biggest problem with this illness is that none of us are really the same, we have common symptoms but we are unique in treatments and other health problems. It is a long difficult path to find the right combo to make this endurable still with our "bad days" but some are luckier than others so depending on your body and drug sensitivities you may only need a beta-blocker (usually one of the first drugs tried) or florinef (a corticosteroid) I'm not familiar with Canada at all but the test you need to confirm pots is a tilt-table test. I really feel for you with fibromyalgia, my cousin has that and is in a great deal of pain also!! pots is also not recognized by alot of doctors so hang in there and make sure your doc. is informed. You will have to have other disorders ruled out first like M.S It's a verdict by way of elimination process, very agrivating so keep your spirits high and pray alot!( hope that's not offensive to you...my faith is my only constant in my life!)

[EarthMother]

Gentle hugs your way.

It is hard when we struggle through each series of tests, only to find more deadends and more questions than answers. But you know by now, after reading the boards, you are not alone. I have been struggling with the diagnosis of Chronic Fatigue Syndrome for over 6 years and autoimmune thyroid disease for probably over 20 years. It is a battle -- between ourselves and our bodies, between the doctors and ourselves and unfortunatley often between our insurance companies and our sanity.

That said, I DO think the tilt table test has been one of the most positive things I have done. There is a sense of validity as we stand there and "prove" that we are not imagining our symptoms. You may be wondering ... what if I am not symptomatic the day I am tested. No worry, if your heart rate doesn't sky rocket they can inject you with meds that will simulate a bad "pots-trip" and then they will still get the information they are looking for.

If you are uncertain if this cardiologist is the right one ... call ahead. Ask to speak to the nurse, let her know you want to see if Dr. X is familiar with POTS before you come in for a consultation. When I made my appointment in December, I made sure I let folks know what I was up against and I made my needs clear. I told them I was going through a difficult spell and that I wanted the first appointment after lunch (sitting up in a waiting room is the pits for my pots) and that when I arrived I would ask for a room to lie down in while I was waiting for the doctor.

Before I went to the doctors I kept a blood pressure and heart rate journal for two weeks. I did "tests" upon rising, mid morning, lunch time, mid afternoon and evenings. For each I would take a "resting" level -- lying down, then standing and then usually another after staying up on my feet for a few minutes, then one final one lieing down. I brought these to my first appointment with the cardiologist and he didn't hesitate to say POTS and scheduled a tilt table test for the next morning.

It's hard being an advocate when we don't quiet feel ourselves. If you have a partner, bring them along. My husband attends all of my doctor visits and tests. Not that he says much, but it helps to know he will speak up if I need him too, and he validates my story through nods, smiles and strong empathetic glances.

Good luck on your healing journey. Please let us know how it goes.

EM

[MightyMouse]

Welcome to our board.

First, if you've not had all the tests to rule out other disorders, those really need to be a priority. Some treatable disorders overlap in symptoms.

Second, a cardiologist may be helpful in figuring out exactly what issues are affecting YOU. As you may have already found out, there are a bunch of autonomic disorders. There are different courses of treatment depending on exactly how your body is operating. Yes, there are many things that can be done, some low tech interventions, and some medically-based. Typically, there's no perfect answer, but for many of us, the right combo of treatments make the difference between being completely disabled and being able to have some normalcy ability to function. For example, I wouldn't be able to work if I was not on meds.

Lastly, a cardiologist isn't your only option. While it happens to be that many of the specialists in ANS functioning are also cardios, there are neurologists and endocrinologists who may specialize as well. There are 3 sources for finding a doctor who may know more than the average doctor:

Here on DINET, look at the physician list. Also, NDRF and the American Autonomic Society have referral lists as well. LMK if you need the direct links to these.

Nina

[denabob]

one other little tip..... write down all symptoms no matter how small they seem.When you see a new doc they tend to surround you with questions and you leave thinking "I wish I had mentioned __________" so that is important to make sure you have it written down. Good Luck

[TinaM]

Thank you everyone for your very helpful advice - it is VERY much appreciated! Now I know what to expect and to prepare myself for.

It is a very good idea to keep a record of blood pressure & heart rate (sitting &/or lying down + standing at various times during the day for a couple of weeks before my appointment. Hopefully, these readings will be obvious enough that they will point him towards giving me a tilt table test - if not, I will be proactive as you suggest & ask him about it!

I will also write down all my symptoms before the appointment & bring the list with me. I am familiar with having to do this during those years I was trying to get endometriosis & fibromyalgia diagnosed.(Boy, autoimmune disorders are a real pain in the butt!! - it is rare to find any quick test that will diagnose them). I learned then how important it was to stand up for myself & be my own advocate.

Maybe I will talk to my family doctor as well so I can get all the relevant blood tests done (which I know will all turn out normal) & out of the way before the cardiologist appt.

Unfortunalely, in Canada I believe that there are only 2 doctors(both in the east of course!) that actually specialize in POTS.

I will let you know how my appointment in April goes.

Thank you again denabob, Earth Mother, & Mighty Mouse!

- Tina

[goldicedance]

Like all my "forum friends" before me, I endorse all their recommendations. One more point I would like to add...do not let the doctor's tell you that it is "all in your head, that you are imaging things, that it is stress, that it is nerves." The last time that I saw Dr. Low at the Mayo, he told me that doctors are wrong when they blame POTS systems as being "all in your head." He then said, yes, it is in your head but from the autonomic sense. Keep the faith! Never stop exploring possible avenues for alleviating your symptoms. Keep a positive attitude. I have had POTs since 1994. One suggestion...avoid any suggestion to have a cardiac ablation of the sinus node to stop the tachycardia. It doesn't work and causes more difficult problems. Feel better! Keep pushing doctors--try cardiologists, neurologists, and endocrinologists--somewhere in Alberta there is someone to help! Good luck!