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Happy And Scared At The Same Time


carinara
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Hello everybody.

Due to a very intensive research, I finally got in touch with (what they have told me) the main german POTS expert.

I got an email today from his colleque doctor who also knows much about POTS. They want to invite me to their clinic for some tests. He wrote me, that they plan to do some routine tests to see how the sympathic nerv activity is. They also want to messure the catecholamines whilest laying down and in the upright position. Then he mentioned something about simple tests which will risen and lower the BP to see how my reflexes work.

All together iam quiet happy about this situation. I got diagnosed last year in a autonomic section of a famous hospital. But the stuff there, only diagnoses patients they don?t treat them. That was the reason, that I didn?t have any doctor I can go and see about POTS and ANS Problems on a normal bases. Now one year later I have finally found one. The only problem is that the hospital is about a 6 hours drive away.

Well here come my question.

1.) can somebody explain to me how the above mentioned tests work? My TTT last year was such a horror experience, I never ever want to have one again. I do hope that they don?t perform one on me.

2.) My body got a little bit in balance again since my diagnosis last year. I still have daily symptoms and cant stand for more then a few minutes, I have to be very carefull in order to not get symptomatic, but the tachy and over all symptoms are not as severe as last year when I was bedridden for quiet some while.

I now wonder, what if they do some tests with me, and then tell me in the end, that

My numbers are ok? And that I don?t have POTS ? I know its probably a silly question. But I was so reliefed and glad when I finally got my diagnosis last year after so many years of suffering. I don?t want to loose it again. (sounds like me and POTS got friends :-)I mean, I wish I could get rid of POTS, that?s not a question. But after so many misdiagnosisis in the past 10 years I don?t want to experience something like that again. I truly know I have POTS and my

Diagnosis from last year says the same. But you all know, that for some strange reason, we do have moments in the day, were we feel better for a little while, what if they catch one of these moments and tell me afterwards that iam perfectly healthy?

Did anything like this happen to any of you before????

Iam sorry to ask such a silly question, but at the moment iam happy and scared at the same time.

Thanks a lot

carinara

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i feel the same way you do because when i had my ttt my blood pressure went up alongwith a very high heart rate but when i take my blood pressure at home it is always low or real low with a very high heart rate so what do i do now because i have been told i have pots but by the ttt results i dont really know.

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Hi,

it is quite normal to be nervous about having further testing done. Because we are so often told that there is nothing wrong with us (by doctors who know nothing about dysautonomia) we end up needing to be (bother brain fog - can't remember the word that means the doctor agrees that we are really ill not mad!).

Autonomic tests are very sensitive and are likely to pick up problems in your ANS even if they don't cause you severe symptoms. I can remember during my TTT that the doctor and technician both jumped up from their chairs and looking worried asked me how I felt "a bit hot and slightly lightheaded but not too bad, normal for me really" was my answer (my heart rate had just jumped from 65 to 170 but I wasn't aware of it). At the end of my TTT I thought the test would be negative as I didn't faint so I was suprised to be told that it was strongly positive for POTS.

What I'm trying to say is that your body will tell the doctors. And expert doctors should know that how we do one day is not the same as how we do another day and take that into account.

Good luck, let us know how you get on.

Flop

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Ken870 if your HR went up by more than 30 beats per minute from your HR when lying flat then the TTT shows POTS. (Sorry difficult to get the words right but for example your HR could go from 70 to 100 = POTS, 80 to 110 = POTS, going up to anything above 120 = POTS).

The criteria for diagnosing POTS on TTT does not say anything about BP it can go down, stay the same or go up - all can happen with POTS. The important factor is the increase in HR.

What did your doctor say the TTT showed?

Flop

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Carinara,

Hi, I hope it all goes well for you. I would just ask them what their protocol is and if they prefer you off of meds and of any other restrictions etc.

As far as the tests, it seems like most will be blood tests laying, sitting, standing to check levels of different hormones. Also, the reflex testing might be baroreflex testing? So, maybe the test while lying down and you breathe heavily (pant) or blow as hard as you can into a machine? Maybe google autonomic testing? They may also do a QSART test as well? To find more descriptions and more accurate ones :blink: , you can google the names for info, look at dinet's website, or look at past forum threads on the topics.

I am just not very good at explaining the tests and I haven't had all of them... :P

Good Luck!

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I contacted this doctor by email 2 days ago, just to ask what kind of tests he is thinking about doing. I couldnt believe it, but he emailed back within 1 hour, asking me more questions and letting me know that he would like to do a

Mikroneurographie. So i went searching on the internet. I didnt find many Posts about it on Dinet?!? and also not too many on the internet! I did find one article about were they give you some medication that highens and then lowers the BP doing the test just to see how your ANS reacts. I looked up what kind of medications these are and just knew straight away that i would never ever take them. I experienced extreme side effects with similar but lower dosed medication in the past and i am not prepared to risk a full crash down! My TTT last year was dramatic enough without any medication.So i contacted this doctor again and there again, he wrote back straight away telling me that he received the reports of the hospital i got diagnosed last year (incl. TTT report) and that they confirm his assumption! In order for him to get a more complete picture he wants to do a Mikroneurographie without any extra medication. He wrote that he will get in contact with me as soon as i can have an appointment. Yesterday i got an email again saying, that he is planning on seeing me in the next 3 to 4 weeks!

I'am very surprised on how interested this doctor is. I really really wish that i have now finally found somebody i can work with. He wrote me we should stay in contact and that i can contact him at any point. He asked me more questions by email then all the other doctors in the past 10 years!

But why is it that only a few people on dinet seem to have had a Mikroneurographie? Has anybody of you had one before? How did it go? Did it make any difference afterwards like getting new meds? I would really appreciate some input.

Thanks a lot

carinara

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Hi Carinara,

I'm so happy for you that you have found a doctor who seems interested and knowlegable! And that he will be able to see you so soon. I'm afraid I don't know anything about the testing you are discribing, but wanted to wish you all the best and hope you find answers, and maybe even solutions. Take care! Keep us posted.

Summer

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Just me- If you trust this Doctor, and it sounds like you have good reason to, I would do it. I went to Mayo for 2 weeks and had many unpleasant tests. I knew Dr. Low and his colleagues knew what they were doing and I was right. So, fear sure. He is aware of your fear, and if he feels this is necessare I would go a day early and be rested and trust. They will be able to take care of any side effects. Since you have had noone to care for you in a year, and the fact that there are DIFFERENT OTHER DIAGNOSISIS for all of us. This is an incredible opportunity. Have Faith...... Miriam

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  • 1 month later...

Hello everybody, i just wanted to let you know, that tomorrow is my appointment with the so called 'POTS' Expert in Germany! I got all my paperwork together, I also printed out the causes of POTS listed on the Dinet site plus an article written by Dr. Grubb. I have so many questions to ask this doctor and really hope, that he has got some time to talk things over with me.

I felt really sick tonight because i overdid it. I still had the packing to do, find a hotel, take a shower and a few other things. I normally know when i have to take a break and need to rest, but today i just didnt have any time because of the important appointment tomorrow. Tomorrow morning (in about 8 hours) we will go on a 7 hour car trip to Hannover. Please keep your fingers crossed for me, that something good comes out of this appointment with somebody who hopefully (for the first time) knows more about POTS then i do. (all the other doctors have never heard of it before).

carinara

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good luck! i hope that the trip is uneventful & that the appointment is a good one!

:) melissa

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Family history of Hypertrophic Cardiomyopathy

i just read that in your signature. That is interesting since my father, uncle and grandma all suffered this confition and I was once told by a cardiologist in passing that there may be some connection...

ramakentesh, i just googled about: Hypertrophic Cardiomyopathy because I never heard of it! All my heart tests and scans came back ok. I even spent a week in a cardiac hospital (before i was diagnosed). My heart seems to be in perfect health. I just got a little mitral v. prolaps. But they told me that was nothing to worry about.

I didnt mention this on my signature because i didnt get around to write one yet. You probably looked at somebody elses signature :-).

Thanks a lot for your support, this site is so great. I just got up (its 6.30 in the morning right now) and looked at my Post i wrote last night. Ist such a great feeling to see that people care and understand. thanks a lot! I have to go now!

Love carinara

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