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List of unanswered questions


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Here are the questions that I didn't get answered during my appt. (it is some of them-I don't know if i can remember them all-I'm having a bad day today-very shaky!!)

1. Is it ok to have surgery(general) with POTS?

2. Is dental work safe, even if you are put under a "twilight sleep"?

3. What is the rate of deaths/serious complications with POTS?

4. Did POTS cause my leakage and aortic insufficiency and will it progress?

5. Do I need a potassium or magnesium supplement?

6. Will a pacemaker help with the HR and irregular beats and how do I know they are from the POTS and not something in addition to the POTS

7. DOes the sun, or just being outside make your symptoms worse? The summer is horrible!!

8. Is it normal to have veryfast heartrates (up to 200 but only rarely that high-usualyy up to 150-170), many PVC's and PAC's with runs, and feel like a machine gun going off at times.

I know there are others-just can't think right now!!

Does anyone else have these symptoms and are they normal POTS symptoms?

--wake up in the middle of the night with heart racing, SOB, can't see well, clammy, sweaty

--Does your heart race all of the sudden for no reason even when you don't change position

--do your toenail beds (the white-moonshaped area) turn BLUE-not pale but blue

--BP goes whacky with "episodes"- either real low, real high(140's/100) or just one number registers--is it still safe to try the Midodrine with these BP's

--does anyone else have chronic neck and shoulder pain with knots

--lots of leg pain and aches

--has anyone else not been able to tolerate a bolus of iv fluids-when I got one my HR went up and I was very SOB

--does anyone else feel like a prisoner to their own body????

-- is anyone else afraid to be alone or just always afraid of dying?-I don't share this with many folks!

I think this is enough for now, thanks for everyone's help-hope you can read it-I am so shaky and POTSY today!!!

Danelle

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I'll put in some of my "opinions" to the questions I have experience with.

1. Yes, you can have surgery. BUT, make sure that you let your doctor(s) know about whatever you have been diagnosed with. My wife has done well with some surgery and horribly with others. She has had issues with some of the anethesia that was used on her. This is something not to take lightly.

2. Yes, this is safe. However, there are certain conditions that require you to take an antibiotic before having work done. My wife has a leaky heart valve that requires her to take Amoxocillin prior to any dental work.

3. Not sure on this one. From what I have heard this is very low. I hope that is right. I would guess that if you have a progressive deterioration that it could cause serious problems. Many people seem to have more serious problems in addition to the POTS. Some of the other things can be dangerous.

4. Not sure on that one, but interesting question.

5. My wife does not take these. I would recommend that you talk to your doctor about what you should or should not try.

6. You would need a defib type pacemaker. Yes, they can help, but many doctors try to stay away from pacing as a solution. My wife has one for her NCS that keeps her heart from dropping below 50bpm, but it does nothing to stop the high heart rates. You really need to work with a cardiologist/neurologist team to make the determination about what is POTS related and what is not. Even then, they may not agree. My wife's doctors flipped on alot of things.

7. Yes, it can.

8. No, those are not normal rates and are considered dangerous by most doctors. My wife is still struggling trying to get this under control. She runs into the 180-230 ranges for extended periods of time.

My wife gets severe muscle pain and chest pain on a fairly consistent basis. I need to get back to work, so will add more later.

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1) I can?t answer fully. I do know that you need to be careful because of medication sensitivity that many of us have. So tell the anesthealogist this and hopefully you?ll be set.

2) I can?t answer fully. You need to make sure that you don?t have MVP or other heart related problems or you might need an antibiotic to be safe with dental work. Again see answer for number one, we are chemically sensitive to medications.

3) According to the research, this is not a fatal disease! Serious complications? I believe there are over 60 documented symptoms of POTS, some of them are not to pleasant. If they can manage you with medication, diet, sleep and just plain getting to know what your triggers are; you can improve the quality of life. If you had Shy-Dragers that is fatal, but they say it is very slim to go from POTS to that diagnosis.

4) That?s for the docs!

5) That?s for the docs too! But I was put on a magnesium supplement, just didn?t tolerate it.

6) If you have sinus tachycardia from POTS, we?ve been told that an ablation can make things worse by solving the tachycardia and leaving you with extreme hypotension. You would have to have an EPS study to see if this is the answer for you. Another one that is left best up to a cardiologist to answer. I don?t know what your complete diagnosis is.

7) Definitely YES! The heat makes POTS symptoms unbearable. You should avoid saunas, hot tubs, hot showers, hot weather, extreme temperature changes. Kicks my symptoms up to high gear!

8) Good question for the cardiologist. But I was clocked at 160 J When I had my very first episode (in a hot shower) I was much faster than that, If I had to guess I would say about 200. I have had many PVC?s, PAC?s and a run of V-tach. When I first started with POTS symptoms I would have a problem when I was trying to lay down for bed where my heart would just take off up to 160bpm. It was so uncomfortable and I wouldn?t be able to sleep. That problem has been fixed with my beta blocker. You need to be careful though, are you sure that it is sinus tachycardia. Many rhythms, especially above 200 bpm can be dangerous or even life threatening.

9) Glad you asked about shoulder/neck pain. It?s been an issue for almost as long as my joint pain. The doctors use to tell me that my muscle spasms were related to stress. NO, I know better than that now. I used to just have muscle spasms in my upper neck, back, calves, hands and feet. Now I get spasms throughout my back, hips, buttocks (ok, pretty much every where.) It?s been painful to stand for the past 4 days they have been so bad at times. My shoulders are constantly in knots.

10) I suffered for over a decade with severe joint pain, until I saw Dr. Grubb. He put me on Neurontin and it has helped with several symptoms and completely takes away the joint pain.

11) I do very well with IV fluids, in fact better.

12) *I do get scared to be alone, especially when I?m sick or really symptomatic. If my kids are gone to their dad?s house and I?m alone, I get a bit nervous. I usually call someone and let them know that I?m home sick and I may need to go to the hospital and make sure their available to me. I also have called my ex-boyfriend a few times (that is harder than I can ever begin to impress upon you, but he knows better than anyone that I know, what this illness is.)

13) I have been afraid of dying with this. Sometimes I think that the doctors are wrong and that I?m going to be one of the casualties. I was getting my IV iron today and I had the worst belly pain you can imagine. I thought that I was going to let out a scream it was so bad, but it finally past and I didn?t say anything. I think you build up a tolerance to pain and symptoms with this syndrome.

14) I get chest pain, shoulder pain, pain in my arm pits that wakes me from a dead sleep. I get a pain in my back sometimes that makes impossible to take any kind of a breath. I?ve had pain radiate up to my face.

15) POTS is finally recognized as a disability but beware that you have to fight for it. Get ready to resubmit many times to qualify. There are horror stories about disability, not just with this illness though.

16) Hope this helps a little bit. I?m just a patient with my own experience for what it?s worth.

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I can't answer each of your individual questions, but I am learning that POTS does some weird stuff to the body that can't be explained. For instance, I sometimes feel that I am living with someone else's hands attached to my arms -- I have trouble with fine motor skills sometimes. I was trying to pick up a bunch of change off the table the other day and it took about 10 minutes (should've taken about 10 seconds). I also seem to have severe constant weakness, which most other people with POTS don't have, and a chronic shortness of breath. Although it's entirely possible I have something else going on and it hasn't yet been picked up, I think there are a lot of things that happen to the body that can't be explained because we are all so different in terms of genetics & environment.

So maybe your unique things are BP swings, blue toenails and such. I'm sure they're related ... how can they not be? Once one thing, like heart rate, falls out of line, everything else has to compensate somehow -- blood pressure, vein constriction, etc. I'd not worry too much about what is causing what as much as trying to get yourself back in balance as a whole. A good diet, regular exercise (force yourself, even if you feel like you're dying. I promise you'll feel better), breathing exercises/meditation, beta blockers (usually low dose), and maybe anxiety meds if you need them. The more you stress, the worse it gets. The bottom line is even if we are dying (and I bet we're not), what the heck can we do about it? Cardiologists can't implant a defibrillator in all of us.

Take care,

Amy

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Danelle,

I can't answer most of your questions, but I would like to address your question about what are normal POTS symptoms. I have POTS, and I wake up in the middle of the night, too, with most of the symptoms you are having - sweating, hear-racing, short of breath, confused, trembling, etc. It happens occasionally during the day, too, when I'm sitting at my desk at work. My heart races for no reason, and stops just as quickly at all times of the day. I don't have the blue toenails, but I've heard of others that do. My BP used to go up and down, but I think the florinef has helped even that out. I take midodrine, too, because my BP was more low than high during the day. It made me feel pretty whacked out until the florinef started working. I don't have the neck and shoulder pain, but I do have the leg pains, stabing pains in my chest, pain that feels more like pressure in my chest, occasional joint pains (especially my big toe and right knee), and headaches that come and go. IVs and oxygen make me feel better. YES, I have felt like a prisoner in my own body. I sometimes cry because I don't know what's going on inside of me. And YES!, I am afraid of being alone and I get scared that I'm going to die without being able to say good-bye or I-love-you to anyone. When that happens I try to calm myself down and remember that POTS is NOT life-threating. It sure can feel like it, though.

Just remember that you are not alone!!!!! You can come here and read what others have to say, and write what you need to say. It always seems to make me feel better. I used to be scared about every new ache or pain, but I think that we really DO get used to the pains. Just knowing that others are going through similar experiences is so reassuring. It was the not-knowing that was driving me bonkers.

Keep writing and asking questions. The bad times will pass, and you'll have good days again.

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Here's the list of POTS symptoms from the main portion of the DINET site:

http://www.dinet.org/symptoms.htm

Certain disorders are known to result in POTS or POTS-like symptoms. It may be that your aortic issues resulted in your symptoms...or it might be the other way 'round. Same goes for the pacemaker issue... Hard to say. Ask your doc. Here's the long list of known causes/issues:

http://www.dinet.org/what_causes_pots.htm

The general recomendation I recieved from Dr. Grubb re: surgery is to have the hospital treat you as a cardiac patient and be alert for sudden changes in bp and hr. Otherwise, I was told I have no additional risks. I've had 5 major surgeries w/ POTS. Keep in mind, general anesthia or twighlight sleep will typically take a bit more time for you to get over than the typical patient. Expect to feel funky for a few days.

If you haven 't read the overview on the main portion of the DINET site, here's the link.

http://www.dinet.org/pots_an_overview.htm

You may not need supplements for magnesium and potassium--check with your doctor. Some meds may make it more likely you need supplements.

I have seen no data comparing death rates to the normal population. Anyone else have that?

Lastly, your issue with the "sun" is more likely to be an issue with the heat. Heat provokes vasodialation so that you can cool your body via sweating...and that can provoke lower bp b/c blood is now being shunted to the skin for cooling. See the list of what to avoid:

http://www.dinet.org/what_to_avoid.htm

Nina

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I was told at NIH that certain anaesthtetics would be contraindicated, but I don't know what they are. That would apply to dental ones as well. And I just generally react adversely to any medication. Yes, I have horrible neck and shoulder pain and knots also. Yes, I feel that my autonomic system has gotten the best of me at times, definitely for the first year of this illness ( I have had POTS for 2 years now and time is a great healer.) It's hard not to feel depressed when everything you try doesn't seem to help much, but it is important to keep a positive outlook and enjoy those precious moments when you do feel a little better.

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Actually, I've had MANY procedures with twighlight sleep for dental procedures and for GI procedures. I was never given demerol--rather, they used versed. http://www.rocheusa.com/products/versed/

Nina

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there are about as many symptoms as there are people with this disorder, i'm beginning to think. i will say one thing. i had eps and ablation last year and it was the worst thing that could have happened to me. that does NOT mean it would be for you. only a cardiologist experienced with these syndromes can help you with these decisions. and the pain is awful. i am on a heart monitor now, and it's because i was having so many arrythmias i thought i was going to die and my son would find me. i was more scared of that than what was happening. all the resaearch i've read says pots is not fatal. it just feels that way sometimes. i am by myself all day long and find my cat gives me comfort. i do not worry about being alone, but i hate the thought of not being home and having something happen, so i don't travel anymore. i never use gas at the dentist. and i have had a few surgeries and not really had any problems, except the healing seems to take a little longer. just get plenty of fluids. morgan

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