tilt table test

[sleepy237]

Finally finalllyyyy after three years Cardio are sending me for tilt. I wondered how many of you had had this and what treatment you were offered? I have very bad dysautonomia and have fought against a psych diagnosis (somatisation) for over three years so yesss I am excited! Cardio gave me 24hr ecg i queried pots on questionnaire and they already know as letter says "this test will be helpful". My link has always been joint hypermobility syndrome perhaps complicated by PTSD. I have the usual bp irregularities and fluctations and tachycardia but i also drop into bad bradychardia which makes me very near to collapsing. I am trying not to pin my hopes on a pacemaker but truth me told i already have. so come on Jury give me the delivering speeches and let me know what I should expect. I have waited so long on gettin to the bottom of this and medical is now taking over My test should be shortly and although I am scared cos i cant stand still for 5 minutes ( i read tilt is 40) i need this so much. Thank you and hope you are all doing okay with this terrible disease. ~Sleepy

 

[Francelle]

Hello sleepy 237,

I haven't had a tilt table test, however, I would think that you should perhaps stop any meds you may be on like florinef and beta blockers before the test that may interfere with the result. Not too sure though!

Any thoughts from anyone who has done this test?

 

[Esther12]

My link has always been joint hypermobility syndrome

Sounds to me like you should have had this test long ago. Are you seeing anyone good about JHS and it's related problems? A lot of medical professionals assume that it just means you're hypermobile, and it's well worth trying to see an interested specialist. Good luck.

 

[TinyT]

Hi Sleepy237,

I have had a tilt table test about 10 days ago. Francelle is right, you do need to stop any meds prior to your test (in conjunction with your doc's advice) like florinef & beta blockers as they will interfere with the results. You should hopefully get some info on prep prior to the test though. I had to fast (no food/water) for 4 hours prior to the test.

My tilt table test was at 60 degrees, protocol is anywhere from 60-80 degrees but it obviously depends on what the hospital/clinic does. Good luck & make sure you get someone to drop off/pick you up from the hospital. I also brought a snack with me for afterwards & a bottle of rehydration mix which helped. Prepare for some PEM/payback for a week or two afterwards.

Depending on which Tilt table protocol the hospital/clinic uses they usually tilt you up to 60-80 degrees and then leave you there for approximately 20mins. If you have not had a significant response by then, they may then give you a drug to induce a response (a vasodilator or something similar) and then observe you for another 20mins. See this article for different protocols and what is involved http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1513525/

The tilt table test should last at least 30-45mins as some patients dont respond until the 30-40min mark (pass out). If you do faint or have an adverse reaction which is intolerable for you they can stop the test at any time. A doctor should also be supervising the test just incase.

I also have just been diagnosed with joint hypermobility syndrome by my GP, autonomic dysfunction can occur with this condition due to the connective tissue problems.

I wasn't aware that a pacemaker was a viable treatment for POTS but I may be mistaken. This is a great website regarding studies, testing and treatments http://www.dinet.org/

Presently I am waiting for my TTT results and then will get a referral to a neurologist who specialises in dysautonomias. From what I take it, POTS & dysautonomias are rare and not well known of, so not every cardio or neuro is well equipped to help you. Patients also get misdiagnosed with anxiety disorders unfortunately due to complaints of racing heart etc.

My GP has started me back on a low dose (10mg) beta blocker to keep my max heart rate down which is helping. I am also looking at trying fludrocortisone to help with fluid/salt retention. Basically the treatments may involve stopping/reducing the tachycardia, increasing vasoconstriction or increasing blood volume/fluid retention. Treatments do depend on what type of POTS you have (partial dysautonomia or hyperadrenergic). There is info about treatments on the above website too. This is also a good website with links to full text articles http://www.dynakids.org/resources.jsp

I was anxious too about my test. It is an unpleasant experience, but very helpful for your diagnosis. When your cardiologist looks at the data they should be able to diagnose a positive tilt test based on either a POTS response, orthostatic hypotension or autonomic failure. If you see the tilt table test article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1513525/ there is a table in it which lists the kinds of positive responses.

In terms of what my test was like personally. My heart rate went from around 80bpm lying supine to over 150bpm (this is what the supervising doc reported when I asked). I had chest pains/discomfort, headache, nausea, tingling in my feet, feelings of being hot & sweaty (even though the room was aircon), feeling dizzy and light headed, and general fatigue/exhaustion. I did not faint however. My test was on the 28th of April and I still feel like I am recovering from it.

Good luck with your test and feel free to ask any more questions.

 

[jstefl]

I have had two tilt table tests and failed them both in just a couple of minutes.

After failing the first, the cardiologist gave me Cymbalta. Needless to say that was no help! After the second one, I was given Midodrine, a BP increaser. This helped my BP, which had dropped to 80/50, but while taking Midodrine my pulse and BP varied all over the place. The increased BP gave me a little more energy, and made it easier to stand up without seeing stars.

After about two years of Midodrine, I was given Valcyte. I had been taking my pulse and BP daily, and once I started taking the Valcyte, I noticed good things happening. My pulse and BP became much more steady, and my BP slowly began to rise. I weaned myself off of the Midodrine while I was still taking Valcyte, and have never needed the Midodrine again.

It has been about two and a half years since I stopped Valcyte, and my heart is doing great. I have stopped taking my BP every day, as it is always the same. I can stand up without worrying if I am going to faint.

This may not work for everyone, but it worked well for me.

For me the tilt table test was a silly waste of time and money. I knew that I would fail. Doctors like to attach a lot of meaning to this test, so I guess that you need to keep them happy.

Dr. Cheney talks about BP increasers on one of his videos. He doesn't like them much because they increase your BP by constricting your blood vessels, which makes your heart work harder. This is not a cure, or even a good solution to the problem. I haven't kept up, since I don't need the drugs any more, but I believe that there are newer better drugs than Midodrine that have come out since I was taking it.

I might add that after failing the first tilt table test, my cardiologist gave me a stress test. Since I was too weak to use a treadmill, they stressed me by injecting me with a drug that got my heart racing. I needed to be recussitated during the test. You may want to avoid a test such as this, or at least make certain that you have it a a place where you can get immediate help.

Good luck with your test.

John

 

[alex3619]

Hi Sleepy237, I am glad you can finally get tested. I hope you learn something that helps you. Best wishes, Alex

 

[Sallysblooms]

I hope you find the answers that will help the doctors FINALLY help you in the correct way! PLEASE keep us informed!

 

[L'engle]

Hugs, Sleepy! I hope you will finally get some good help. Take care.

 

[sleepy237]

Thank you everyone! Pacemakers can be used in dysautonomia particularly in cases of bradychardia. A year ago i had a TIA- resemblance and my pulse was only doing 45 bpm and to be honest I was terrified and noo one did anything because it was a steady 45 but still symptomatic. It's why i have my hopes pinned on the pacemaker. I have gotten used to dealing with tachy but when it slows down i am terrified. I just pray that the cardio will know what to do and that this will be a little turning point at least in my treatment. I am a bit emotional rollercoastering and I think that is natural but i guess i need to just take each day as it comes and get through this test. Hope you are all well guys. Miss you all

 

[Sushi]

Thank you everyone! Pacemakers can be used in dysautonomia particularly in cases of bradychardia. A year ago i had a TIA- resemblance and my pulse was only doing 45 bpm and to be honest I was terrified and noo one did anything because it was a steady 45 but still symptomatic. It's why i have my hopes pinned on the pacemaker.

Hi Sleepy,

If your doctor recommends a pacemaker, research it yourself carefully. There have been some very difficult complications when pacemakers are given for patients with dysautonomia. And it is not something that, apparently, can be undone. If you read the POTSplace forum, you will find more information there.

Many of us have had very slow pulses at times and 45 is not unusual. (mine went down to 30 in a sleep study) There are less invasive ways to deal with this than a pacemaker.

Is your cardiologist an expert on dysautonomia and/or ME/CFS? Treatment for patients with autonomic dysfunction and/or ME/CFS needs to be different from cardiac patients--the causes of heart irregularities are different.

I am seeing a ME/CFS specialist who is also a cardiologist, internist, pathologist etc. (Prof. Kenny De Meirleir) and his explanation for and treatment of my "heart" manifestions are based on their root cause in CFS. He feels that they will normalize when the roots of the illness are treated.

Also, re your tilt, find out and question before your test to make sure your tilt is geared to dysautonomia rather than cardiac problems. The protocols are different. My tilt lasted about an hour and a half. It was prescribed and read by an autonomic specialist. Too short a one, will not necessarily give you the results you need as most of my wacko readings came after a half an hour. Others go wacko much faster!

Also, find out what they will have on hand to help you "recover" from the test. It is a stressor. As someone mentioned, usually you have to fast so bring your own food and drink. They gave me juice afterwards but I was dehydrated and needed to chill out, and eat and drink a lot before leaving the hospital.

I don't want to make you nervous, but I do want to ensure that you are prepared both with knowledge and whatever you may need afterward to stabilize. A liter of an electrolye drink like (in the States) unflavored Pedialite, helps enormously.

Very best wishes! I hope this test is a step to getting some good treatment.

Sushi

 

[Sallysblooms]

Yes, that is something to be really studied first for sure. Just do a lot of reading and talking to doctors and people that have that done. Hopefully there are other things to help, to try. Good luck!!!!!

 

[Sing]

THE ASSOCIATED PRESS April 18, 2011, 1:38PM ETtext size: TT
Chelsea to ask for Northera approval in 3Q


Chelsea Therapeutics will seek federal approval for its blood pressure drug, the company said Monday, sending shares jumping nearly 25 percent.

Northera is designed to treat neurogenic orthostatic hypotension, which is a drop in blood pressure. The product is Chelsea's lead drug candidate and the company does not yet have a product on the market.

Chelsea Therapeutics International Ltd. has previously said it hopes to launch the drug in early 2012. Meanwhile, the company will continue to study the drug as a potential treatment for neurogenic orthostatic hypotension from Parkinson's Disease.

Shares rose 98 cents to $4.96 in afternoon trading. The stock has traded between $1.94 and $8.20 over the last 52 weeks.

The active ingredient in Northera is droxidopa and Chelsea is also studying droxidopa as a treatment for fibromyalgia, a chronic disease that causes muscle pain and fatigue.

 

[ahimsa]

I agree with the others who have suggested that you ask what protocol is going to be used for the tilt table test. The tests that have only 20 minutes in the first phase may correctly diagnose POTS (heart rate will go up in that amount of time) but are likely to miss those who have a delayed drop in blood pressure. I've had two tilt table tests, first one for diagnosis and the second one to support my disability insurance claim. Both times my blood pressure (BP) suddenly dropped to something below what the instruments could measure and I blacked out. But the BP drop happened after 20-30 minutes for each of the two tests. I had symptoms after about 5-6 minutes but not the severe drop in BP. If they had stopped the test at 20 minutes I would have had a false negative.

There have been a lot of good links posted but here's another one, the link for the patient information on POTS and NMH from Johns Hopkins -

http://www.cfids.org/webinar/cfsinfo2010.pdf

I agree that the test is not always necessary. If you are working with a good doctor, and if your symptoms clearly match up with POTS or NMH (or both), then it is definitely possible to try treatments without doing a tilt table test. I think the test is most useful for disability insurance as well as validation for the patient (and doubting family members). It's also helpful to have a diagnosis so that in case you do have POTS or NMH you can keep trying different combinations of treatments (medications, extra salt/water, support hose, or whatever). Otherwise, if you just try a few treatments and they don't work then you might think the diagnosis is wrong rather than realizing that you're not responding to that treamtent (this problem, like many medical conditions, can be tricky to treat). Not all meds work the same for all people and some meds have side effects that are worse than the symptoms. And people with the type of POTS that has wide swings in BP, or spikes in BP, have a tough time with treatment.

A couple more links with information on Orthostatic Intolerance:

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4788

http://emedicine.medscape.com/article/902155-overview#aw2aab6b6

Best of luck on the test. I got a bag of IV saline after the test to help me recover (esp after the first test - I was a mess, shivering all over, they covered me with a blanket, and I had to rest for a long time before I could stand up). But I guess they don't always do that so the next best thing is to bring some electrolyte replacement (e.g., Pedialyte). Also, have someone with you who can drive you home.

Sending you HUGS!

 

[taniaaust1]

That's wonderful news Sleepy .. finally they are giving you the attention you need and deserve. Hopefully this will all very much change the bad treatment you get.

I too say make sure whoever ends up treating you knows what they are doing and not experiementing on you. Ive heard of ones who get pacemakers in dysautonomia, still having all the symptoms thou heart is now beating okay.

I had some scary incidents in the past where I think my heart slowed too much (and was skipping beats). A couple of occassions I was actually waiting for it to beat again, thinking I was going to die due to its pausing. Now that my ME/CFS is better some, it isnt doing that at all.

Whatever you end up doing.. I hope it works out ok.

 

[TinyT]

A good point too Esther12, some professionals feel that JHS and Ehler Danlos Syndrome type III are the the same thing. However you can get all sorts of problems associated with connective tissue issues.

 

[TinyT]

For me the tilt table test was a silly waste of time and money. I knew that I would fail. Doctors like to attach a lot of meaning to this test, so I guess that you need to keep them happy.

Dr. Cheney talks about BP increasers on one of his videos. He doesn't like them much because they increase your BP by constricting your blood vessels, which makes your heart work harder. This is not a cure, or even a good solution to the problem. I haven't kept up, since I don't need the drugs any more, but I believe that there are newer better drugs than Midodrine that have come out since I was taking it.

I'm not sure what a tilt table test would cost for you &/or what your insurance covers sleepy237. I had mine at the public hospital and it was covered by medicare (Australian public healthcare system).

Some Doctors can diagnose your POTS just by doing a DIY lying and standing test in their offices and checking your BP & HR regularly. This is how my GP initially diagnosed me. However, I got the tilt table test to get some better info about what exactly is going on over time (and for 'real' proof for a cardiologist).

The info or recommendations I gave where for a POTS diagnosis only. There isn't much published info that I have found on ME/CFS and POTS treatment. There is an article out there about how POTS in under-recognised in CFS: http://www.ncbi.nlm.nih.gov/pubmed/18805903

The article just finds that POTS is more frequently diagnosed in ME/CFS patients than controls. However, the article doesn't recommend any treatment options and recommends further research into POTS & ME/CFS. There is an interesting commentary on this website regarding treating the underlying mechanisms of ME/CFS
http://www.meresearch.org.uk/information/publications/standing.html

 

[TinyT]

I agree with the others who have suggested that you ask what protocol is going to be used for the tilt table test. The tests that have only 20 minutes in the first phase may correctly diagnose POTS (heart rate will go up in that amount of time) but are likely to miss those who have a delayed drop in blood pressure. I've had two tilt table tests, first one for diagnosis and the second one to support my disability insurance claim. Both times my blood pressure (BP) suddenly dropped to something below what the instruments could measure and I blacked out. But the BP drop happened after 20-30 minutes for each of the two tests. I had symptoms after about 5-6 minutes but not the severe drop in BP. If they had stopped the test at 20 minutes I would have had a false negative.

There have been a lot of good links posted but here's another one, the link for the patient information on POTS and NMH from Johns Hopkins -

http://www.cfids.org/webinar/cfsinfo2010.pdf

I agree that the test is not always necessary. If you are working with a good doctor, and if your symptoms clearly match up with POTS or NMH (or both), then it is definitely possible to try treatments without doing a tilt table test. I think the test is most useful for disability insurance as well as validation for the patient (and doubting family members). It's also helpful to have a diagnosis so that in case you do have POTS or NMH you can keep trying different combinations of treatments (medications, extra salt/water, support hose, or whatever). Otherwise, if you just try a few treatments and they don't work then you might think the diagnosis is wrong rather than realizing that you're not responding to that treamtent (this problem, like many medical conditions, can be tricky to treat). Not all meds work the same for all people and some meds have side effects that are worse than the symptoms. And people with the type of POTS that has wide swings in BP, or spikes in BP, have a tough time with treatment.

A couple more links with information on Orthostatic Intolerance:

http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4788

http://emedicine.medscape.com/article/902155-overview#aw2aab6b6

Best of luck on the test. I got a bag of IV saline after the test to help me recover (esp after the first test - I was a mess, shivering all over, they covered me with a blanket, and I had to rest for a long time before I could stand up). But I guess they don't always do that so the next best thing is to bring some electrolyte replacement (e.g., Pedialyte). Also, have someone with you who can drive you home.

Sending you HUGS!

That CFIDS link is a good one and great article with lots of helpful tips too.

I brought an 800ml water bottle with aquaforce in it (vitalyte in the US) which helped heaps for recovering from the test.

Its a good point about looking into the protocol used. There are a few different ones out there and differing medical opinions on using medications to bring on symptoms. The supervising doc for my tilt table test said that mine was negative !?!?! I dont have the official results yet but was told after I asked that my HR went from resting at around 80bpm to a max heart rate of 150, this definately qualifies as POTS.

 

[sleepy237]

Thanks all for the info. Appreciate it. Maybe florinef will be enough. I already tried to get it but was refused lol! Oh well one thing they might learn but probably wont is to listen to their patients. I do believe that we are the experts -not of medicine - but of our own bodies. I asked for the tilt a year ago and wasn't given it. Now cardio is ordering it maybe they should eat some humble pie. I do think my adrenal glands are involved a whole lot and maybe treating them will make some difference. First ever test I had was a synachten to rule out Addisons but negative of course. Undetectable levels don't mean there is not a problem. But yes I did look at pacemakers and it did give me second thoughts but end of day I guess its up to cardio. Did you guys who had tilt have bloods taken too during it? Thanks all
Sleepy

 

[TinyT]

I didn't have blood taken but my local hospital is not up with autonomic protocols.

Bloods to check adrenalin & catecholamines pre/post can differentiate between types of POTS

 

[ahimsa]

Its a good point about looking into the protocol used. There are a few different ones out there and differing medical opinions on using medications to bring on symptoms. The supervising doc for my tilt table test said that mine was negative !?!?! I dont have the official results yet but was told after I asked that my HR went from resting at around 80bpm to a max heart rate of 150, this definitely qualifies as POTS.

TinyT, I can't believe that any doctor would say that your test was negative when you had such an increase in heart rate. Is there some other doctor who has more experience in this field who can give you a second opinion about your tilt table test results? I know it is difficult for those of us with low energy to look for another doctor but in your case it might be worth it, especially if your current doctor has decided to not even treat you for this condition based on a negative test result. (or did I misinterpret that point?)

Even my own cardiologist, who did my tilt table test and said that it was very clearly positive (a huge and sudden drop in blood pressure, my failure on the tilt table test seems to be more in the vasovagal category) has often told me that autonomic dysfunction is not his specialty. He says that if I really want a more detailed workup I need to go to someone who is more of a specialist (e.g., he sometimes mentions Dr. Blair Grubb in Ohio). However, while a specialist might be able to tell me more details about my specific problems, I'm not convinced that the energy/expense of going to another state, and going through a bunch of more tests, is worth it. I don't think there's much chance that a specialist could prescribe a treatment regimen that would work any better than what I'm already doing. I could be wrong but that's what my decision is for now.

In case anyone is curious, what is working for me (well, mostly working...) is a combination of midodrine (ProAmatine), fludrocortisone (Florinef), time-released potassium (K-Dur), salt tablets (Bio-Salt) 5 times a day, extra water (about 3 liters/day), avoiding NMH triggers (e.g., heat, standing) and resting a lot. I sit down for everything (bathing, brushing my teeth) and rest with my feet up whenever possible. I rest with my feet up after eating (less blood in the extremeties due to splanchnic pooling). If something big is coming up I do a lot of pre-emptive resting. On the other hand, I do try to take short walks when possible, mostly to do errands, because a little bit of walking does seem help me. But it's important that these short walks never include any standing. I always walk for a few minutes and then sit down! I take a folding cane/seat with me in case there is no place to sit.

It's difficult for me to find the right balance between resting and doing stuff. But I HATE having to rest so much. So, while I'm not in a huge "push/crash" cycle like I was so many years ago, I usually end up pushing a bit more than I should.

On the other hand, my mental health is also important! I remind myself that it helps me psychologically when I accomplish something (hey, look, I actually cooked one simple dish! yay!). That feeling of accomplishment makes it worth it for me even when I have a crash after the fact.