ellen

Tearose, I do use the bp cuff to monitor my pulse- (my machine records both). My main symptom was fainting, so a doctor put me on florinef to raise my blood pressure(8 years ago). I didn't think I had POTS. We got the bp cuff for my husband (Doctor told him to), and it was only because the machine reported my heartrate that I noticed my hr was racing when I stand up. My PCP sent me to a cardio EP, and he diagnosed me with POTS. I'm still trying to gather data to understand what my body does when I stand up. My big problem happens when my bp drops, that's what makes me faint. I drink alot of water, eat high salt diet, take supplements. exercise ( moderately), get up slowly of course, and rest often. And I learn so much from all you- and still learning... Ellen

Thankyou both. Tearose, I checked QVC and they have 32 different models, but they don't give details on each one. Mine lists "measurement range: 20-320 mmHg", but that is obviously not accurate. My blood pressure is like a yoyo. I take it when I stand up, and each reading is different. It's not unusual for it to drop to 90/50, but it comes right back up to 120/80 for a minute, then drops again. I was hoping someone has had a similar condition and has better luck than I with the blood pressure cuff. sonotech- I will check out CVS.

Persephone- Yikes! your story made me say "I need a candy bar!" I hope you're feeling betterby now. This same thing also happened to me at the Dermatologist's office. As I was paying on the way out, I told the receptionist that I was going to faint and needed to sit down (I had just had a treatment where I was lying down for half an hour). I sat in a chair, and as I put my head between my legs, someone came out with a wheelchair and made me sit in it. I could feel their arms pushing me up as I tried to get my head down. You know the more they put me upright, the less I could resist, so I fainted completely, of course. As I regained consciousness, I heard my doctor (whom I love) yell "Call 911!" This office has 4 or 5 doctors and a bunch of nurses, but they needed an ambulance for a simple faint? Afterwards, the nurse looked at my record and said "O yeah, there's a red sticker here that says 'faints'". My advice to you and to myself is to get a bracelet that says, "in case of FAINTING, put head DOWN." I don't know, maybe someone come up with something more clear. Then we can put out the arm and we would'nt have to try to protect ourselves from well-meaning people.

Paige, thankyou for sharing your story- it was NOT boring! I love to hear that there is HOPE for all of us! I hope you continue upward and keep encouraging us. - Ellen

Do any of you know where to find a good blood pressure cuff that measures very LOW blood pressure readings? I have an electronic model from Walgreens (HD502). It doesn't register when my bp drops below 48 diastolic. That is the lowest reading I have gotten. Any lower, and it just keep dropping until it gets to 0. Any suggestions would be appreciated.

Julie, I hope you're recovering from your dental work, I know how stressful it is, even WITH pain relief. Why not let your dentist make the decision regarding antibiotics, just tell him what you told us. Or call your cardio and ask him to talk to your dentist. That way, you have one less thing to worry about. The less stress you have, the better for your body to recover. Hopefully, you won't need anymore work done for a long time !

Me too- I can hardly go to sleep because my hubby has the air conditioner so COLD, then I wake up in the night sweating, and have to kick off the covers. He points this out to me when I complain about the cold A C and I have to admit he's right

Congratulations Rhonda! I'm so glad you finally found a good doctor. I hope you have some good results with the treatment. -Ellen

Yes, Megan, I have this exact experience also. Some of these symptoms are so small, I feel like a hypochondriac telling anyone, including my doctor, about them. But this one occurs so often, without any pattern, or apparently any consequence, that I don't worry about it. I used to ask "did you feel something move?" when I got that feeling. It felt like a distant earthquake (we lived through the Northridge quake in 1994). At this point, if I WERE to feel a real quake, I probably would ignore it!

Happy Mothers' Day especially to all you sick moms with little ones at home and you dear moms with sick little ones at home!

Tearose, that is a good consideration. I had a similar question concerning health insurance: does anyone know if "preexisting condition" is still a cause for insurance to refuse treatment to a new enrollee. I know in the past this was a common excuse for insurance companies to refuse treatment, but it seems like we don't hear this as a concern anymore. Someone told me she is waiting for her insurance to kick in before she finds a doctor to diagnose her with POTS, but is concerned about this "preexisting condition" thing. Anyone have any input on this?

Carolyn, that is the most encouraging report- I hope you continue to feel like a 10, and I hope you let us know about it. We don't have any long-term studies on dysautonomia, so your kind of experience is the best source of hope for us.

I have the same response as Roselover. I have been SO frustrated with the ignorance of medical personnel, "patient advocacy" was my first choice, but I also feel the need for more educational materials. Both are important tools for managing this illness. Thanks again Pooh bear for your thoughtful questions!

I get email notification on autonomic issues from "SPRINGERLINK", but often the articles are by subscription only. It would be good if we had access to these articles through Dinet as an organization (I don't want to pay for every article I read). I would be willing to pay a subscription fee. This way we could access the most current findings and recommend an article to the forum when we find something interesting. Thanks for asking!

I definitely have more palpitations lying on my left side! I can feel my heart beating or pulsing so strongly that I can't sleep. When I flip over on my right side, it quiets down and I can rest. What is that ?

Amyliz42- welcome to the forum! I think many of us have abnormal sweating. I wouldn't say I am UNABLE to sweat but I definitely sweat less than "normal" people. Or I sweat when I'm very cold.

Thanks Jan, these look very do-able. -ellen

I had been happy with Florinef for years but when my PCP recommended I try midodrine, I said, ok. Midodrine gave me a hair-raising feeling: I could literally feel the hair on my head stand up, and I felt like someone just said "BOO!" The second objection I had to midodrine was that it had to be taken twice a day. But you can't take it within 3 hours of going to bed because it can raise blood pressure when lying down. Makes naps difficult. So I switched back to florinef-once in the morning and I'm good for the whole day (or if I forget in the morning, anytime in the day is ok). Also florinef now comes in generic, fludrocortisone, but midodrine was only available as Proamitine when I tried it.

I agree with Michiganjan- you have to work with a good allergist to stay on top of your allergies. It is so much easier to control from the start, than to wait until it gets really bad.

Briarrose- thankyou for the info. I was a bit overwhelmed by the volume ( I feel like I need an "intro to hormones" 101. Then "intro to ANS" 101, intro to cardiology, etc. ... ). but I'm learning. I have had tremors all my life, even before I was hypothyroid. But my doc (who doesn't seem to understand POTS although he said he had heard of it) blamed it on too high a dose of thyroid. As for the pain in the back of my neck, he said that was probably the most common complaint of people over 50 (I've had it since I was 36). He couldn't explain my fainting, low blood pressure, joint pain, orthostatic tachycardia, so he did finally agree to send me to a cardiac EP. I'm very frustrated with the doctors I have seen-they have definitely missed something in my case. I'm so grateful for this website and so many of you members who have had the perseverence to continue seeking answers, and are willing to share your experience and knowledge.

IMHO I don't think anyone knows the real answer to this because POTS has not been fully recognized by the medical community yet. I was so discouraged by the doctors I saw back in the nineties when I was really sick, that I just stayed home and suffered for several years. I have been taking Florinef for eight years, but the doc who prescribed it never mentioned POTS. He said he didn't know what was wrong with me (he's retired now). Who knows how many cases have gone unrecognized? If I hadn't researched it myself, and asked my PCP if I might have POTS, I would never have gotten a diagnosis. The EP he referred me to said I problably would not get better because I have been sick for so long. The next visit he said, You'll probably get better. I feel like I have gotten worse. I probably will not go back to him, so he will never get the feedback from my case. I think it needs further study.

Gayla, thanks for the laughter- I laughed out loud when I read Hector can hear the milk carton come out of the fridge in his sleep- he's cute!- ellen

YEA! That's a great way to start the weekend- so glad you're doing so well! --Ellen

Rhonda, yes, I have had tremors my whole life, and muscle weakness, occasionally. But now that I think about it, I had tremors last summer when I asked my PCP if I had POTS. He told me the tremors were from being "over medicated" because my TSH was slightly low, and we lowered my thyroid dose. Bad idea. Now I'm back to full strength thyroid and I take it under the tongue until it dissolves (yuck), and my shakes have gone away for the first time in my life!!!. He also sent me to the cardiac EP who diagnosed my POTS. Rhonda- I don't know if I have Hashimoto's but I have been treated for "low thyroid" since about 1996. My doctors have been so casual about it . And my insurance has changed several times, doctors retired, or got ill and I haven't kept an exact record. I always thought of myself as healthy, so I don't pay much attention ("ignore it and it will go away"), but I'm realizing now, I have alot of other symptoms.

I never had a diagnosis of IBS, but I have always been plagued with constipation. I was too embarrassed to see a doctor about it, so I just added fiber to my diet, exercised and drank alot of water. And continued to struggle with constipation. Looking back, I realize I had alot of POTSY symptoms before I actually got sick (chest pains, fainting, poor circulation, tachycardia ) but they were so minor that I would never consult a doctor. And my blood pressure was always very low. When I did finally see a doctor(I was sooo sick I couldn't take care of my kids), he couldn't find anything wrong! and the next one and the one after him. So yes, I think I also had "pre-POTS".