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New Here Not Sure If I Have Pots (sorry Long)


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Hi my name is Mindy and I am new here. I have been having problems for about a year now. Mostly since the birth of my son in Aug. 07.

Here is my lists of sx

Fast heart rate (I've had 2 doctors tell me my heart rate was fast they never looked into it)

Brain Fog (This vareis comes and goes)

Fatigue (This can get bad sometimes)

Muscle Twitches (never in one spot comes and goes sometimes I dont have them at all)

Dizziness/Fainting (I sometimes get dizzy upon standing. Sometimes its so bad I have to sit back down or I will faint) I've had this for a long time. Thought it was normal. I have fainted before when I was 16 then again at 19 and then again 2 months ago. All upon standing except when I was 19. I was pregnant then. Bending over and standing back up sometimes creates a headrush/dizziness. Going up flights of stairs can wind me and make my heart rate to go up.

Speech problems (comes and goes like I cant get the words out or they come out wrong)

Sensory overload (was bad at first not so bad now)

This is some of my major complaints. I have been to 2 neurologists and many doctors and nobody knows. My PCP thinks I need to see a shrink.

Here are the tests I have been thru

Thyroid

SSEP

EEG

EMG

ANA bloodwork

other routine blood work

Vitamin D (which was low)

Could I please get some feedback from all you guys. I would appreciate it.

THANK YOU

MINDY

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Hey Mindy,

Sorry your having such a rough time with figuring all this stuff out.

The things you have listed are all things that I will experience on a day to day basis, and yes I do have POTS. However this does not mean that you do. While all the things you listed could be from having POTS, I cant say for sure that you have POTS, so I think that it would be best to do some more tests first. You said that your heart races...but does it get worse upon standing and then slow down again when you sit/lay down?

I would look into getting a TTT or Tilt Table Test. This is the main test to determine if you have POTS. You said your doc wants you to go to a "shrink"as you put it. I am guessing this means he/she is telling you that its all in your head. We (people with dysaut.) were usually told that a time or two throughout the diagnosis process, so dont let that get you down and feel that this isnt real. Even if your problems would end up being from a mental illness (which I dont feel is the case) that doesnt mean it isnt real and that you are a falure, so dont let yourself become led to believe that.

I think that maybe it would be best for you to go through a different doctor for a TTT, as I'm not sure you are comfortable with the one you are seeing now. The doctor who scheduled my TTT wasnt a POTS doctor at all, he specialized in sleep problems, but was my neurologist.

What part of the country are you located in, or what country I suppose as well. Perhaps someone here depending on where you live, could refer you to a good doctor that you would be able to look into dysautonomia with.

Good luck, if you ever need anything feel free to PM me,

Mary

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Hi,

Welcome! I just want to echo what others have said and try to find a specialist that is familiar with dysautonomia and get a TTT, without doing this it can be very hard if not impossible to get any answers. Hopefully you can find someone to help you and give you answers. Your symptoms do coincide with dysautonomia, but it also could sound like many other conditions as well. Try to not stress to much, because it will only make things worse. Try to not self-diagnose too much before seeing a specialist as well, because this can get you overly anxious about what is going on and lead to stress.

Good luck! :blink:

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Richard ?

Sorry to hear you?ve been going thru this. I have most of the same symptoms you describe. I was dx?d with POTS a year and a half ago after I failed a TTT (after having all the tests you mention turn out fine). I was terrified to have this done for the same reasons you mention. One of my docs even said he knew what the results were going to be before they administered the test. Good news was that my HR shot way up right away w/o being injected ? if you can call that good news.

Unfortunately, the doc who dx?d me with POTS had only ever treated one patient with it and I didn?t feel comfortable with this. I bounced around to a number of docs before getting an appointment with one of the specialists listed on the Physicians List on this site. I usually brought them this article by Blair Grubb who is one of the leading authorities on POTS - http://www.medscape.com/viewarticle/522421_print

You may want to do a search on MVPS (mitral valve prolapse syndrome). I have MVP too and at first thought it might be MVPS. Actually, my POTS doc thinks this is all connected.

Hope you find out some answers soon. Hang in there.

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Thank all of you for your support. I am have always wondered if I have CFS (chronic fatigue syndrome). I do get the sore throat and tender lymph nodes. Occasional body aches. From what I understand CFS has alot of strange sx. Some are POTS like sx. My sx wax and wane. Come and go.

chronic fatigue syndrome is often associated with dysautonomia (POTS)... i have cfs along with tons of other diagnoses... there is a huge connection, i believe with the immune system and the development of autonomic dysfunction

btw.. i suffer all the symptoms you listed. Also have low vitamin D... still not sure if that is partly a cause or result of chronic illness.

best,

nancy

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Hello and welcome!

It sounds like you may very well have POTS or some type of dysautonomia. I would try to get a tilt table test. You might also try to get in to see an electrophysiologist (a cardiologist who specializes in heart rythms). They are often familiar with POTS. Some PCPs are willing to order tilt table tests and holter monitors, but if your PCP doesn't know/understand POTS then it may be hard to convince him to order those tests.

Check out the physicians list on the main DINET site. You might find a doctor recommendation in your area.

Have you ever had your heart rate and blood pressure taken while lying down, and then again 1 minute, 5 minutes, and 10 minutes after standing? If there are changes in your hr and bp, that would be very helpful information for a doctor to have.

All the best,

Rachel

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