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WOW! So confused! IST, OI, POTS, CFIDS...


DABS
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Hi there. I am sooo happy to have found you guys! I thought I was the only person in the world with these crazy symptoms. Well, not really but my drs sure have made me feel that way.

I've had palps and sinus tach on and off since I was a teenager. I'm 37 now. The first episodes were fleeting and my first major episode occurred when I was in my early twenties at which time I saw a Cardio and he told me I had sinus tach and perscribed Atenolol which I never bothered with. The problem seemed to go away on its own for about 6 years or so but returned with a vengeance sometime after having my daughter who is now 10. During the past several years I've changed my pcp a couple of times and have seen 2 additional cardios because I've basically been dismissed as being "anxious"! One of them told me that the only problem with my being tachy is "that I'm aware of it". What is that supposed to mean?!

My current cardio is a compassionate person that I respect but he doesn't seem to know much about this condition and has prescribed Zebeta (isoproprolol) which seemed to have a mild positive affect early on but really isn't helping at all now. I am scheduled to see him on 4/19 but have little hope that anything will come of my visit.

Since finding this group and reading thru all of the info here I'm questioning exactly what my paricular "syndrome" is. I've spent time at an IST (Inappropriate Sinus Tachycardia) forum as well. Its all so confusing and overwhelming. I'm hoping that if I describe a little about my symptoms I can get some advice on where to turn. I'm thinking that I may be a POTS candidate but am not sure of the type of dr that would be able to diagnose this. I think I need to see an Electrophysiologist but doubt I'll find one here in RI. Here are my symptoms:

Increased heartrate round the clock but somewhat lower during sleep (if I remember the results of my 24 hr. holter test), nearly constant palps, nite sweats, near fainting, chest pain/tightness, shortness of breath, dizziness, nausea, inability to stand without worsening symptoms including weakness/shakiness, lack of concentration, and extreme fatigue. I'm also very sensitive to heat but get cold very easily as well. THIS IS NUTS! Not sure about blood pressure.

Testing done: ekg, echo, stress, thyroid levels (many times), 24 halter monitor, various bloodwork - all normal other than increased heartrate. I did have an ANA that was positive and have been diagnosed with Raynaud's Disease by a rheumo dr.

Wow - its really harad to actually write all of this personal stuff down. I'm been doing such a good cover up job over the years. Its weird to face up and put it out there. I've begun telling my family members and thats been scary too. Anyway, over the past year my symptoms have worsened to the point where my quality of life is deeply affected especially in the last two months or so. I am currently not driving and hardly go out. My husband is extremely supportive and I'm relying on him way too much. I need to get back on my feet! Wow! Sorry for being so wordy. I tried to be as brief as possible and appreciate your time and concern. Thanks to all of you for caring.

--- Debbie

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Welcome to the board!

This topic just came up a few days back, just before you joined us. I'm posting the link to the thread so that you can read through it. One of the members posted some important distinctions between IST and the other conditions which I think might really help to answer your questions.

http://dinet.ipbhost.com/index.php?showtopic=374

Nina :rolleyes:

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Welcome Debbie. The symptoms you mention are very familiar here and yes it can make you feel nuts. I can relate to you saying you are not as active and stay home a lot. I hardly leave the house myself except for errands, etc., and feel like I want my true whole previous life back in many ways!

It sounds like a tilt test would be beneficial in determining whether POTS is your problem. Nina pointed you to the thread of the other person who had IST so maybe that will help too in determining which is the problem.

It is hard to find a doctor who "knows" about this stuff but there is a link somewhere where you can look and see if there are doctors near you. If not, you may have to travel. Many great places are mentioned here on the boards. I personally live in Ohio near Dr. Grubb's office at the Medical College of Ohio and he is really good. Usually, some neurologists and cardiologists will be knowledgeable of these conditions and also you might get really lucky and find a PCP who has some base of knowledge. If nothing else, break out your phone directory or insurance directory of physicians and start calling around and asking who has experience with autonomic instability issues and see if that leads you anywhere.

I wish I could give you some better advice. All I can say is that I know how you feel...we all do...you are in good company here for support so stick around and say what you feel. It is very cathartic to share and realize you are not alone. Welcome, keep us updated, and don't give up. It can and does get better for many. :rolleyes:

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Hi Dabs -- I'm extremely tired right now -- but I can never go to sleep these days without visiting my friends on the board and seeing what--and who--is new! A couple thoughts came to mind as I read your post (and never ever worry about saying too much or being too wordy or whatever... Your story is part of you, and we all have a story to share.)

The word syndrome, the "s" in POTS, simply means a collection of symptoms. And as you've seen by now, we all suffer different symptoms at different times... though some things seem to be pretty universal (esp. the tachycardia--the "t" in pots!) You know a lot about "your particular syndrome" -- you articulated your symptoms quite well!'

An electrophysiologist is the right kind of doctor to see, but not the only kind who can order a tilt table test and interpret the results. I've been seen by cardiologists (one of whom had a particular interest in the autonomic nervous system), and I too went through the battery of cardiac tests you described--as well as the autonomic nervous system tests. There are several, but generally, the tilt table is the one considered diagnostic for pots. Ask for this test when you see your cardiologist on the 19th.

Actually, I had one other test that it doesn't sound like you had: 24 hour urine collection, which they test for AMA and vanillymandelic acid (if I'm remembering right). Basically, they look to rule out extremely rare tumor on the adrenal gland, which can cause output of excessive adrenalin and increased HR. You could also ask your cario about that one ... but it's pretty uncommon (I don't want to scare you--it's just that it's good to get some things ruled out!)

There are definitely measures you can take to help yourself feel better... and they've been mentioned often on other posts. I'm sure you've seen them by now -- start drinking 2 - 2.5 liters of water/fluid a day, increase salt, and wear compresion thigh highs or pantyhose (the kind you get at medical supply store). Get a prescription from your doc so insurance will cover.

Good luck to you; I hope you feel better soon.

m

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