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Posted

I went to my PCP the other day for other stuff and brought up the possibility of POTS as a diagnsoes for some of my symptoms. She agreed that it definitly could be POTS. Although the patiets she has with POTS are all young and all faint, I am 33 and ahvent' fainted since I was a kid.

So she is hestiant to do the table tilt test on me because she thinks the specialsist who would do thest would say I have too many other variables being that I have been using a wheelchair for the last seven years.

So my question, what is a table tilt test like? (my doc said it is no fun) and 2. will being ina wheelchair affect the results?

Thanks

Posted

I'm old :rolleyes: and don't faint either (three times in 26 years) - and I have hyperadrenergic POTS diagnosed by tilt table test. I know that many people have terrible trouble with the TTT, but mine wasn't too bad. I felt pretty crummy right after, but they gave me IV fluids which helped for days.

I don't know how your being in a wheelchair would affect things - maybe they could ask the autonomic doc about that?

Posted

I had a tilt table done.... and I don't really get what the point of it was.

I was strapped onto a table, they straightened it up and let me stand there for 30 minutes while a machine measured my blood pressure and heart rate. There was a woman who sat there and watched me and I was supposed to tell her if I had any symptoms (which I didn't) and then she would write them down. They dimmed the lights and I couldn't talk... it was sooooo boring!

After that they injected me with isoproterenol which made my heart rate go up like crazy. I felt an adrenaline rush but none of my "problematic symptoms". I stool for 20 minutes with that.

I was told my test was normal... but I was told to get a Tilt Table by Dr. Grubb which I couldn't do to travel/time/money/etc... so I just went to the local Dr... so not so sure about the success of it

Anyways I had to ask the Dr. about POTS after the test... which he said no I don't

My symptoms that I am struggling with are basically random episodes of vertigo/ataxia with slurred speech and brain fog (there is more but I won't go into the details).

I do have EDS type III, but Dr. Kula at TCI didn't think my neurological issues were from Chiari and Dr. Francamono in Maryland can't find instability on my MRIs... so no one knows :/ - I have to go back for re-evaluation after I deliver my baby (I'm 6 mo prego).

So I guess I am not sure why the Tilt Table is so dreaded... unless you have problems standing... but that was my experience.

Posted

Hi,

If you have been in a wheelchair for 7 years your leg muscles are atrophied and are not pumping well. It will be hard to see what is caused by deconditioning and something else.

  • 3 weeks later...
Posted

Yes accept that I do standing transfers and can walk five feet before needin to sit down as lon gaws I have something to hang on to and can stand for up to three minutes at a time, maybe longer if I pushed myself. Today My PT and I did a "poor eprsons TTT" and just tested me sitting at rest and then stood for two minutes and took my vitals while standing durin those two minutes. Sitting my heart rate was 88 and standing it was 106 which is a difference of 19 which fits with POTS along with my other symptomms. But of course that was just a true small test. for now I am going to look at ways to treat the symptoms, such as meds and possibly IV fluids.

Sorry it took me so long to reply, it has been a tough few weeks. I hope all are well and I look forward to meeting more people! :)

Kerri

tubefed since 2004

and probable POTS

Posted

I was too ill for the tilt test two years ago. I said I didn't want it. They are so variable, so I had other tests. I have no idea why a wheelchair would matter for that if you walk off and on.

I am not a teenager that faints. There are many, many that are older and do not faint. I would have but just made sure I didn't walk too much. I am better now but I still have to watch how much I stand and do.

Posted

I agree with Reen that I won't do another TTT. It's no fun to have my heart speed out of control while my bp bottoms out, and I flatlined. For some patients like me, it's a test that documented my symptoms & explained why I felt so bad. If you want to be tested, be persistent.

Posted

Thanks. I am going to my doctor tomorrow as I just got back from the ER. I ha chest pain and the EKG was normal, although my pulse was tachardic, although not enough for the ER to be concerned. They doped me up on pain meds and sent me home to be followed up by my doctor. I am hoping I can tlk with her in detail about my symptoms and treat the symptoms whithout necessarily doing the TTT, what other tests could I do if not the TTT? There sure is a lOT to think about! I hope everyone has a good night.

  • 8 months later...
Posted

If you have NCS/POTS, having a tilt table test feels like you're dying from bleeding out of your body. Essentially, that's what the brain's picture of things is. The body gets put upright, is strapped down tight to the table so you can't do any of the subconscious counter-measures to bring your BP back up (like fidgeting, alternating weight from leg to leg, tense muscles, etc.). When tilted upright (and if you do have NCS/POTS), you'll feel the blood pooling in your lower limbs (hands, legs/feet). Then you'll start to feel the heaviness of this. Then you'll start to feel numbness in various parts of your body as they're being deprived of oxygen as all of the blood is pooling rather than circulating. You'll definitely be dizzy as **** by this point because your brain isn't getting oxygen either. My heart tried desperately to get blood where I needed it and went flying well into the 180-200 bpm range. At the same time it feels like you're suffocating (because you are!) and you're gasping for air. Don't forget the nausea. There's a reason they tell you not to eat/drink anything before this test -- it stands a good chance of coming up.

If you're lucky, you pass out quickly. I think symptoms started after 3-4 minutes. I went into full asystole (heart stopped entirely) after 6 mins 48 seconds. Apparently a new record for the cardiologist's office. I was in asystole for a good 15-20 seconds before my heart started to sputter and beat like nothing ever happened. Physically, I felt exhausted and dizzy, fortunately no nausea after passing out though.

Actually, let me rephrase that. If you're lucky, you don't feel any symptoms and are just bored out of your mind whilst strapped uncomfortably to a table in a near-standing position for 20-40 minutes and wonder what the purpose of this crazy test is.

As far as how being in a wheelchair would affect this, I don't think it would make much of an impact. For those of us who are still ambulatory, we subconsciously use our leg and arm muscles to help circulation. I didn't realize how much fidgeting I did until I was strapped to the table and my body was trying to do anything it could to bring my blood pressure back up. When they do the test (at least mine), I was strapped down tight enough that I didn't have the benefit of being able to use my leg muscles nor move my arms around to counteract the blood pooling.

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