Tilt Table Test

[s-pot]

I was diagnosed with pots via the poor mans tilt test last April , consisted of me having a monitor strapped to my wrist and going from sitting to standing position myself. HR went from about 70bpm to 140bpm however no clear picture could be seen of what was happening with my BP with this tilt table test. It was enough to diagnose the POTS anyway.

Im nearly a year on after my diagnosis and im still trying to piece together exactly what is going on in my body. I dont ever faint but have regular 'near syncope' episodes, mainly vomiting and dizziness. Im turning blue at times to try to get the consultant I have been dealing with to take any of this seriously....in fact today he brushed me off with the 'Medicine isnt an exact science, we dont know'! Lark. Needless to say im a little frustrated. And everytime I try to mention the vomiting etc and feeling of 'everything draining from my head' symptoms he says my BP is fine Pots is all about the HR.

My BP is normal when im sitting, rises slight when I stand (HR jumps way up) but i suspect it only crashes about 10-15 mins after I stand and cos nobody seems to really understand this in the medical profession it seems impossible to get them to take me seriously when im trying to tell them this...i get that 'your over anxious' look!

My last hospital admission my BP was fine when the were doing sitting and standing but the one day a nurse took it after I had an episode of wretching etc its was just 87/40...but ya think I could get them to pay any heed!

I would appreciate some advice on this one....I am thinking of trying to book the proper tilt table test and get my GP to refer me for it. I just dont know will this be of any further benefit to me? Its costly and im a student so i want to be sure it is worth going for the proper one again before i put my hand in my pocket...AGAIN!

[Katybug]

Hi s-pot,

Sorry the docs are not being attentive. I think its safe to say that most of us have gone through this in our POTS journey and some are still searching. It makes it really hard to deal with being ill when even the docs are not taking you seriously. But, keep searching as there are good and caring health care providers out there.

As for the TTT, I think it is really important for you to have a full TTT (45 mins.) in order to get a complete diagnosis, at this point. The poor man's tilt proved you have POTS, but, you may also have other autonimic problems like neurally mediated syncope (which involves your BP dropping) and that will require a full TTT to diagnose.

Good luck to you in your search. I will keep you in my good thoughts!

Katie

[Clairefmartin]

I agree with Katy, the full on real TTTt will reveal your BP issues, and it's worth it! Then find a new doc! You do not deserve to be brushed off. Also, maybe print out some articles to bring in to your doc or the ER, there are loads listed on dinet. Not google or wiki stuff, but medical journal articles. If you need help finding some let me know.

Good luck!

[Chaos]

I agree that the full TTT may give you more info, but I think the literature actually suggests that the formal TTT may give more false positives than the poorman's TTT.

As you are a student and not one with a pocketful of cash You may do better to try to find a more knowledgeable dysauto doc first and then see what they recommend. Even a doc who is not familiar with dysauto but is at least willing to read the research and try to learn with you would be preferable to someone who keeps blowing you off. Even if you get the full TTT and your current doc won't listen to you, it will unlikely be to your benefit to have spent the money on the test.

A good doc, i.e. one who listens to you, is priceless. You're wasting your money on anyone who isn't wanting to be on your team and proves it repeatedly by blowing you off.

[s-pot]

Hi all

Thanks so much for all your replies to this post its bin a while since I was on.

As of today I managed to be taken seriously by a new GP in the practice who has referred me on for a proper tilt table test and following that to a specialist who seems to be most up to date on this here in Ireland.

Needless to say he was desperate to get me out of the office as quick as possible cos he didnt have a clue what POTS was and heard me vomiting just before i went into him (this is my most common presyncope symptom)...he was terrified I was contagious or something :lol: !! worked in my favour! Getting the TTT done privately and will get specialist on the public system(free) there will be a wait but sure ill get there!

Just one question thou...for the proper TTT do you come off meds just before the Test or just continue as normal?

[janiedelite]

Definitely try to get off all of your meds prior to the test. That may be difficult, especially to wean off of your lexapro. But it's best to be off of long-acting meds like that for a good 3 days before testing. Mayo wanted me off all meds that work on my heart or nervous system for 3 days prior. I'm wondering if you could just skip your midodrine the day of the TTT, since it's so short-acting?

[DoozlyGirl]

s-pot,

As I was reading your post, I recalled my long journey before getting my diagnosis of orthostatic hypotension and autonomic neuropathy. For years, I knew I felt better while laying, but I couldn't really describe why. Once I figured out my HR would jump around signifiantly while exercising, I bought a HR monitor and keptt bringing my logs to my PCP's appointments. When I later suspected that my BP was an issue, I did the same thing with a BP monitor. It wasn't until I began to take my orthostatic BP readings multiple times a day that gained the interest of my new endo. I see you are getting your referral, but documented abnormal values may get you in sooner. I got in within two weeks of my referral, due to the big drop in my BP upon standing.

I would take my BP while laying flat on my back, before sitting up in the morning. Then I would sit on the end of the bed and within a minute or so, take my BP with my arm at the same height as my heart and feet on the floor. I would then stand, and lean my arm on a tall boy dresser and take my BP again. I would take it every minute or so for about 10 minutes. Orthostatic hypotension can happen within 10 minutes of standing. These values prompted my TTT and full autonomic testing, and I failed every test, propelling me into the dysautonomia world.

Good luck getting your TTT.

Lyn

[icesktr189]

I was on Lexapro and klonopin when I did my TTT and still failed it, so you might be able to get away with staying on your meds.

[kayjay]

Like Dani, I was also on meds and still had a very dramatic tilt test I just didn't take my beta blocker the morning of. Please check before you stop any medication. You may not need to and you don't want to put yourself in any danger!

[rubytuesday]

I never fainted with 2 TTT but cardiac physiatrist was convinced it was POTS (guess by the VS) and started me on florinef (that did not stop my near syncope spells or BP plunges). I never started fainting until after 2 1/2 years of the near syncope. I have fainted 4 times last year--and I think what was going to be 5 but DH caught me going into a face dive into our concrete driveway that probably brought me to right away. Now I am staying more in OH and cardiac specialist in dysautonomia told me that with my ANS failing me that I will have fewer warning signs of faint.

[Katybug]

I was on florinef and metoprolol and was told to stop them a week before my test. But, you should probably check with your prescribing doctor or at least the pharmacist about the specific meds you're on as some meds should not be stopped cold turkey.

[jenglynn]

I was at inpatient at Mayo while I had my second TTT, QSART tests and a couple other autonomic tests. The issue of not taking my meds was never brought up. I had taken all the meds just 20 minutes before my tests began (Midodrine, Florinef, Klonopin, Adderall, Paxil, ) and I failed all tests miserably and actually had fainted within 30 seconds into my TTT. I was diagnosed with Adrengenic Autonomic Failure Neuropathy (possbily immune mediated but yet to be determined). But my symptoms were so severe at the time that I couldn't stand/walk at ALL and syncope was happening upon sitting so I don't think they wanted me off any of my drugs- but I have heard several times that when you have these tests it is ideal to be OFF any drugs that treat autonomic symptoms so you can get a true reading of your actual symptoms. Just be SURE that you go over this with your doctor/s before stopping any medications to make sure it is safe to do so.

I know we all really hate to say we want to get the "worst" results possible but really what we want are "accurate" results.... and we don't want drugs that treat our symptoms successfully briefly throughout the day to give us a false reading and ruin our chance at getting the diagnosis we really need to move forward. Good luck to you and like I said, just be sure to make sure you check with a doctor before stopping ANY drug because your safety is more important than any test result. ((((HUGS)))) I know how much can be riding on these tests and how stressful it can be. I had the same fear before I began mine...... "OMG.. I JUST took my meds! Everything is going to come out normal and all of this will be for nothing!!!!" And as we all know, our symptoms vary from day to day too.... When my husband took me over to Mayo to the ER for Emergency Admit because I had signs of organ failure and my Cardio had called him and told him to get me there immediately based on some test results and labs he had just gotten back- I was sent to triage for my initial vitals. I was sitting in a wheelchair which usually still makes me symptomatic. My BP was 118/80 and my HR was 89. I could have DIED! My BP is NEVER that normal nor is my HR, drugs or NO drugs!!!! Yet here I am at Mayo waiting to be admitted as an EMERGENCY admission with perfectly normal vitals. They wheeled me back over to my hubby and I looked at him and told him and I thought he was going to strangle me. I was VERY much against going to Mayo (long story, but I fought a LOT of this process all along the way and was in a lot of denial, and had a bit of a tantrum about having to go get admitted ) and he looked at me like I had put some voo-doo curse on myself to get out of getting admitted. Anyway, by the time I got into the ER my meds had worn off, vitals returned to my very abnormal normal and had syncope 5 times in the ER... but what I am trying to say is that above all things our bodies are not predictable.

Keep us posted, Hun. You've been through so much. I am thinking and praying for you.

Jen

[s-pot]

Thanks all you guys for your above posts and apologies in delay in gettin back on here...Im working hospital shifts days/nights at mo so when im not working im sleeping!

I got my TTT date yesterday...for this MONDAY! So I have stopped meds for the moment and am going to see how I get on...althou already today im quite tachy so Ill just have to gauge it over weekend. Im nervous about this TTT , to say the least!. I have had no autonomic testing at all since i was diagnosed with pots via the poor mans TTT last year and have just been consistently told to 'mess around' with the Midodrine to see what dose works best for me. Its very hard to manage it with no guidance or no medical opinion based on accurate knowledge of the condition.

Im hoping this and the specialist referral I have gotten will get me places althou im reluctant to get my hopes up to...the medical professionals are difficult to deal with at the best of times.

I have notice there is a direct link for me between hormone cycles and symptoms but also meals/food and symptoms. My most recent stint in hospital the nurse decked I was hypoglycaemic just 1-2 hrs after eating...but yet again nothing was done.

So Ive bought an online blood glucose meter and am going to try and figure this out by myself!

Anyone any knowledge or experience of hyperinsulinaemia/reactive hypoglycaemia that could give me any tips? Tbh I think I have something going on with my Pituatry thats messing up hormone levels, kicking off serious pots symtpoms at certain times and also causing the hypogylcaemia......Try telling that to a doctor thou and you get that familiar...'shes over anxious' look! grrr

[kclynn]

Hopefully the testing will be a start of being able to get you more effective treatment

[peregrine]

I'm having TTT and other autonomic testing later this month. The neurologist told me I could stay on my lamotrigine, Seroquel, Lyrica, and birth control, but needed to come off of my atenolol (boo), Cymbalta, any as-needed meds (albuterol, ibuprofen/other NSAIDs, hydrocodone, lorazepam, dramamine, benadryl, decongestants, etc) within 5 half-lives of the medications (that would be equivalent to going in with 1/32 of the dose in my bloodstream, although she said 5 days and for most of these meds that's more like 1/1000 the dose). Emailing her now to ask if I need to also stop water and salt loading and wearing my compression stockings too, and whether I should continue all the stopping through seeing her the day after and any relevant bloodwork. My poor man's TTT at home was pretty significant - I recorded it and show it to my docs, and they like the info. Need to do it again with stockings and atenolol!