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Got My Official Pots Dx


mvdula
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Well, I saw Bev at Dr Grubb's office yesterday. It was a very long day, leaving Chicago at 6:30am and arriving back home at 11pm. They even got me in for the TTT while I was there, which confirmed the diagnosis. I am happy to have my Dx confirmed, but mainly sad. Who wants a diagnosis of chronic illness, espcially being a wife and mother of 4? Bev also wants me to have some more blood tests to test for hyperadrenergic POTS (the tests that reflect whether I have the NET gene defect). I hope they are negative for my kids' sake - I expect they will be since I have no family history. Bev did prescribe Coreg, but I will not take it until my blood tests are done. From what I have read, I do not want to try the Coreg (beta and alpha blocker). I realize that they are the Drs and have lots of experience, but feel from my own research, symptoms, feelings that I would rather try just a beta blocker first. I hope my Dr will let me try this first - he is a very humble Dr and always listens to me. Also, Bev feels that I have JHS - I was very surprised at this, even though I was a gymnast when I was young and have scoliosis that developed as a teen. I never noticed my arm can overextend - but she and my husband could see it clearly. So, she thinks that predisposed me and pregnancy/lactation was my trigger. It was good my husband went with me and Bev talked to both of us - he is now more sympathetic to my condition since he undrestands it better (is now explaining it to everyone!) and has heard the confirmed Dx from the experts. So, thank God I got a real Dx, but to me it is very sad as all my life I have been healthy and it's a little bit of an identity crisis to have things change like this. I'm sure it has taken many of you a while to accept and come to terms with this Dx, and realize you can be happy and have a life, despite your limitations. Thanks for reading!

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Hi Maggie,

actually getting the diagnosis of POTS can be very upsetting and stressful but it also marks a turning point for you. Until you have a definite diagnosis it can be hard to get other people to take your symptoms seriously. Many members here have gone through years of the "it's all in your head" treatment and attitude. With the expert team of Bev and Dr Grubb validating your diagnosis you now know what the problem is and can start on the pathway of treatment and symptom management.

POTS isn't necessarily a permanent condition. Whilst members do post about their struggles and ongoing problems there are also lots of members who are not regularly active on the forum because either their condition is controlled with meds or they have got better - they no longer need the daily support of the message boards. I myself have had really good periods when (so long as I took my meds) I could forget that I actually had POTS at all.

The next step for you will be to try a medication, then in joint consultation with your local doctor and Bev / Dr Grubb to work to find the right treatment or combination of meds for you. Good luck, we're all here for you.

((((((Hugs))))))

Flop

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As I mentioned in my first post, I would like to start trying just a beta blocker (m y bp is not generally too low, just normal) - and I think it is the constant tach that is wearing me out, etc. From everything I have read on this board and elsewhere, it seems like ATENOLOL has the fewest side effects, and is the best tolerated with the best results. Could anyone who has tried it or is on it share your experience with me?

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Hi,

I remember when I got my diagnosis and the doctor told me he had a good news. I was not going to die from it. I felt so insulted because I felt that he did not understand that fainting all the time is not necessarily having a life. Now I have a better quality of life and I have learn to accept my limits, at least some of it!

A diagnosis is like a double edge sword. You are happy to know what you have but you now know what you are up to.

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Regarding beta-blockers, I am prescribed Bisoprolol in tiny doses by my cardiologist (although my neurologist recently suggested increasing the dose). Lots of members do seem to get on well with Atenolol but my Dr chose Bisoprolol because it is more selective for beta-1 rather than beta-2 receptors. This mean that it has less effect on lowering blood pressure and less tendency to cause bronchospasm/asthma. Different people suit different meds, you just have to try until you find the right one for you. As with any meds I would recommend starting on a low dose and seeing how your body reacts before going up to a "normal" dose.

Flop

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Maggie - you're welcome, support and advice is after all the main reason for having the forum. I'm glad it is helping you. Good luck with whatever med you decide to start on and keep asking questions and giving us updates - it is always good to hear how members are doing.

Flop

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Hi

I read your post with tears in my eyes. I was dx about 14 months ago and I remember sending out an email to family and friends saying I have a dx but I am not ready to talk about it. On the one hand there is the relief of knowing what you have but for me that did not answer why - not why me- but why did this illness start - what was the cause. I wrestle with that still. I am sure you will get some relief from medicines and that you will improve. Not a day goes by that I am not reminded that I have pots, but I am stronger and more in control of my symptoms. I have 3 kids (I think you said you have 4) and they keep me busy and distract me from how I feel. The flip side is they wear me out and that can make me potsy! It sounds like you are getting good medical care which is so important. I also get some counseling since I have another chronic illness as well and sometimes I really need to vent, cry etc. I recommend it! My husband and family and friends can only support me so much and they really can't help with the big issue - how do I learn to live with this. I have to figure that out for myself.

I am sure that better days are ahead for you and am sending you healing wishes!

p.s. I was taken off of Atenolol put on Nadolol - I can't tell the difference but it does control my heart rate.

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I was sad about my diagnosis at first (like you said, who wants to be saddled with a chronic illness?) But now, I'm actually really happy about it, because it EXPLAINS so much. And I'm really glad to know that it's not psychological. That's a big relief to me!

It will get easier. And we're here for you!

Amy

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I can completely relate to what you're feeling! I got my Dysaut dx two years ago, and on the way home after the hospitalization that resulted in the diagnosis, I remember my mom and I both just crying so hard -- out of a combination of relief and sadness. In the long run, I just realize how much better things are now that I (and my doctors) know what's going on with me and have at least some semblance of an idea how to treat it, but of course I wish it weren't an issue in the first place, and that all of my health issues had turned out to be some short-lived, transient flu or something. I wish you the best of luck with dealing with all of this, and know that we've all been there!!

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I'm glad you were finally validated, but I do know how it feels to know you will be dealing with chronic illness.

It's definately a very difficult road. It sounds like bev is doing all the right tests, and I'm glad your PCP has been good for you. It sounds like he will be willing to work with Dr. Grubb and Bev.

I remember when I was finally diagnosed. One day I decided to go out to the mall after being bed ridden for a month, and Slowly, I began to function a little better, but nothing like I was. I decided to go and pick up a necklace I dropped off at a jeweler for repair. When I picked it up, I THOUGHT I felt pretty good, so I'll go get a hot pretzel. I picked up the pretzel and started walking back towards the exit. All of a sudden my heart rate dropped dramatically, then shot back up to a really fast HR, or I had a bad arrhythmia. I greyed out, and thought I was going to fall over. After I went to the ER, a doctor set me up for a tilt table.

The test came out negative, but I was on a beta blocker, and refused the isuprel. My heart rate went up 30bmp, and bllod pressure did drop, but not enough. I was delayed, and I was nervous, so I'm sure I constricted more whihc would also skew the test results.

When I finally went to Dr. Grubb, he studied my file & other test results, and diagnosed the POTS. He gave me a brochure to explain what it was. I first thougt, who is this guy, and what is he trying to sell me?? :unsure::blink::huh::o I quickly learned how valuable he is to all of us. I wasn't used to a doctor being nice, AND who also took me seriously. I thought there must be a catch, and that Dr. Jekyll was going to turn into Mr. Hyde any minute shocked3.gif.

I had been mistreated by so many doctors, and a couple said I had anxiety issues---(crazy), that I didn't believe I could finally have a name to my illness. First your trying to proove something is wrong physically, and once you find out-----then your in denial............ <_<

Good luck to you, and I hope you get a good treatment program, so you can feel more functional.

Maxine :0)

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I guess since I'm still waiting for anyone to confirm anything with me, I haven't had to deal with an actual diagnosis and the mixed feelings that come with them.

However, at this point, I don't need a doctor to tell me I'm sick. It's like a big DER. I have just gotten so used to psych diagnoses, I don't even blink at those anymore.

I'm sure it must be hard to know you have what may be a long chronic illness, but I think somewhere inside of all of us, we already know it. I think only of a bit a validation I would feel, and it doesn't strike me that I would be upset by it. But, since I will never get a straight answer from anyone, I can only go by my experiences. The really positive thing I see is that your husband had an aha with it, and that may prove to be the most positive thing of all, and will hopefully help in the future. morgan

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