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Should I Participate In Research?


deucykub
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Hi, everyone!

I could really use your opinion/input on something. My POTS doctor (autonomic neurologist) would like me to participate in some research he and his team are conducting. It would be within the next few weeks, and the information gleaned would answer A LOT of my questions about my body and POTS' effect. The research would last about a week, and pretty much all of it will involve the good ol' TTT (lots of ups and downs, ha ha).

The last time I had a TTT in November 2006 it knocked me completely out of work for two weeks. I am just within the last month finally able to work about 3 hours a day from home, not exactly a record-breaker there. If I do the research, I'm going to have to stop all my meds. No meds plus TTT will probably throw me into a pretty big POTS hole (I just love that term... who came up with it?).

Here's a list of what the research would entail:

1. Blood/Urine tests checking blood counts, electrolytes, kidney fx, and liver fx

2. General & Neurological Exam

3. Brain Blood Flow

4. Arm/Leg Skin Blood Flow

5. Calf Blood Flow

6. Sensory Testing

7. Sweat Testing

8. Several different types of drugs adminstered

9. Ultrasound of Carotid & Brachial Artery and Aorta

10. Nerve Activity Test

11. Lower Body Negative Pressure Test

12. Hand submersion in cold water

13. Nitroglycerin administration

14. Mental Stress Test (this one is the worst for me - arithmetic in my head - yeah right! I have a decent IQ, but I'll look developmentally stunted!)

Lots and lots of information my doctors could use to treat me, and since my doctors are the ones performing the research, it's immediately available for application! No cost to me for any of it, and they actually pay a decent stipend and house you in the hospital for your stay.

I'm not sure if I'm getting any better beyond my 3-hour-working-breakthrough. I'm sure that I'll feel pretty crummy after the testing is through. :lol:

Answering some of my questions would stop the wondering and maybe focus my treatment to what will be most effective. Plus, I believe in helping the doctors research this illness so they can figure out how to make us and future POTS sufferers better!

What would you do? I'm leaning towards yes, but I'd really like your thoughts before I decide (the doctor is calling me on Monday to discuss). Also, what questions would you ask?

Thanks in advance for your help. I hope you are all having a "good" day.

(Yikes! Sorry this is so long.)

Deucykub

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Guest tearose

Wow, this sounds like an excellent, complete work up!

I haven't had the TTT done with meds so this is new to me. From my recent visit to Mayo, I learned that it is usually the cardiologists that like to add the meds and see what happens. The neurologists don't usually do meds. Maybe they decide based upon any questions about the origination of problems in our heart vs. just the ANS. Just guessing...

Anyway, where it this research being done? I would want the confidence in knowing it is a reputable place AND that they are prepared for any problems that may arise while putting your body through such a rigorous work-up.

Are you really concerned about the mental stress test? Is it really math? I have no idea what this test is but I suppose they want to test your cognitive skills?

I am curious Deucykub, do you suspect you have any problems with sleep? I ask because you may want to add a sleep study. If you are having mini-awakenings every hour like some of us, (you would not be consciously aware of these) then this will explain any daytime mental foggyness and cognitive delays/ slower processing time.

I can't think of anything else right now.

do tell where this research is...

best regards, tearose

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hey there,

good luck with the research. i hope they get some more definitive answers for you.

i hate to share my downer of a story with you, but i'm going to because i just fear you'll get your hopes up going into this research.....i have gone to three different facilities, participating in three separate research projects -- with all the testing that you mentioned that they will do on you. i was hoping someone would give me some further insight as to what was going on with me....i never received any reports, any data, or any further answers into what they found/didnt find (other than the fact that i'm not hypovolemic and that my heart races really fast when i stand up, DUH!)....

.....i just want to tell you not to go into this thinking that they will find the magic equation to fix it all or even to get more definitive answers.....my doc tried telling me this, my EP, before i started in with all the research................i didnt really listen to him, i thought for sure the research would yield something more definitive of what is going on. like my doc said, you must remember that this is pure research, which means they are utilizing certain techniques or tests that are still fairly new and still have many variables........research is a lot of theory in order to try and come up with something that is concrete, solid, or as i have said, definitive...

also, on top of that, going off meds for me for all the testing you will have was pretty brutal. it was very discouraging feeling so sick after leaving these research institutes and on top of that, not really getting any further along in my case instead of just knowing what was already known before i went in for all the testing, "YOUR HEART RACES WHEN YOU STAND UP". man, i was pretty bumbed hearing THAT after the third time around -- especially from mayo clinic where i had the thought in mind when i flew out there, that if anyone could give me answers, mayo could.....but all they could say was POTS and not really hit the nail on the head with what definitively, pathophysiologically was causing pots, aside from the broad term we are all very familiar with --- "autonomic dysfunction"....

i truly hope you get some more definitive answers, but i just wanted to warn you not to go into this with high expectations - just dont want you to get as discouraged and bumbed out as i was after all the research testing i went through...

p.s. yeah, no kidding -- GOOD LUCK with the mental stress! whoa!!!!!! i SERIOUSLY think that was the WORST test for me! ABOVE AND BEYOND THE TILT! i think they said my supine HR during the mental stress (where they are just GRILLING YOU NON STOP to subtract, add from large numbers) was about 140 BPM and i LITERALLY had sweat beads dripping off of my face! they had to give me a WASHCLOTH! :lol: it was pretty rough!

let us know how it goes...wish you the best.

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P.S. they use mental stress test along with MSNA (sympathetic nerve activation) -- they basically put a needle in your popliteal nerve and measure how quickly impulses travel in response to sympathetic activation while performing mental stress. mental stress produces, or is supposed to produce sympathetic response to some degree and they test HR response to it along with how well nerves interplay with sympathetic activation.......they basically want to see if there is any differences with mental stress and physical stress (such as with the hand in cold water test) in BP/HR response and sympathetic activation (is it more or less increased with mental stress or physical stress or is it the same)..........

.......like i said my HR was 140 supine during the mental stress, with the physical stressors such as the hand in cold water my HR was 120's and with tilt my HR was 200, with lower body negative pressure test (a test performed supine, a physical factor test, not mental factor test) my HR was 170's ....... so i'm not sure how they can pull any correlation btwn physical and mental/emotional stress with me because the numbers dont really add up btwn mental and physical stressors! however, i'm not sure what the "results" were from the actual MSNA (the thing where they stick the needle in your leg and watch how well the nerve is stimulated by sympathetic activation during various tests, both mental and physical) .............

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Hi, Tearose and Cardiactec:

Thank you for your replies!

The research will be conducted at the Beth Israel Deaconess Medical Center/Harvard Medical School (wasn't sure if this was okay to say :P ). That's the same place that is directing my treatment for POTS and where I had my first and only TTT. They didn't use meds for my TTT during clinical testing, so I think this would be me as the "rat in the maze" while they watch with interest to see how long it takes for me "to get the cheese." :lol:

I think there may definitely be some sleeping issues with me, but I'll probably talk to my cardiologist at UConn to get that done. Unfortunately, my insurance doesn't cover BIDMC, so everything is out of pocket (yowch!). The study is pretty much already set in it's parameters, but maaaybe I could sweet-talk them into monitoring me in my sleep by batting my lashes once or twice, hee hee.

The consent forms and research description they sent me said there would be a doctor and nurse present at all testing and they would have all counter-measures available should an emergency arise.

I am definitely concerned about the mental stress test, more about the embarrasment that may arise. The description is just like what you said, Cardiactec. Great, sweating it out, that sounds like SUCH fun (insert sarcasm here!). They also do the stroop word color test where the word is a color and the color of that word is a different color, like RED. My cognitive skills have definitely been hampered by not only POTS but Fibromyalgia, too - a double whammy.

Cardiactec, thank you for sharing your experiences and for straight-shooting in your descriptions. I do need to be careful of having too many expectations - that can be such a downer when things don't work out. I'm so sorry you went through all that. I'll bet your participation in some of those studies is already starting or will soon start to benefit people with POTS, maybe even folks on this forum! I participated in some research at U of F for the Fibro, and that along with other research helped steer the focus from a muscular cause to a neurological cause. Now I have my miracle drug Cymbalta! So, don't feel like it was all for naught.

Again, thank you for your replies!

Deucykub

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That is definitely a lot of thorough testing. To me it seems like deciding on it may not get simpler than do the pros outweigh the cons- what are the potential benefits versus the potential risks? Good luck and let us know what you decide!

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hey there, lol, small world, one of the three research centers i went to was beth israel. THEY ARE GREAT!!!! dr.bonyhay and the assistant (jackson) are wonderful. you will like them a lot. dr.bonyhay is very smart and knows EXACTLY what he is doing, so dont be concerned!

when do you go for testing?

lol, oh yeah, jackson is GREAT with the mental stress part. haha, before he started with me he said "okay, so you're going to hate me now", and WHAM, then he just started GRILLING ME, QUESTION AFTER QUESTION, FASTER FASTER, I couldnt answer him fast enough! haha. oh my. i kept laughing, then saying "i feel stupid" cuz i seriously could not subtract AT ALL! if you dont know the answer, just guess! haha, i did! :lol: dont be embarrassed, if that had been a REAL math test, i would have SOOOO flunked!

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I think you should do the research if your able. Keep an open mind and don't get your hopes up, but I really hope you get all the answers you are looking for. (((HUGS)))

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i've participated in a lot of research over the years - inpatient and outpatient - at several places and don't regret doing any of it. that said, it hasn't brought me any magic answers either. but i honestly didn't expect it to so in this way i wasn't disappointed. it did give me a "bit" better understanding of my body (i.e. how non-functioning my ANS truly is) but nothing that really helped treatment for me in the long run. but like i said, i don't regret doing any of it.

going off of meds was often the worst part for me and would definitely be a hinderance for me now as i have to be transported via ambulence if i don't have meds in my system. it's largely a non-issue though b/c i'm now considered "too sick" for any of the official research protocols out there. but i digress.

i guess i've always looked at research participation as a two-sided thing. i might learn something for myself but i'm also hopefully contributing to the general body of knowledge moving forward about ANS dysfunction.

but all of that said, you mentioned the work issue and have written more about it in other posts and i think that does have to come into the equation when you're deciding. i don't know enough to tell you what you should do - obviously only you can decide - but i know that when i was working i couldn't do research that required me stopping my meds b/c i couldn't afford to do anything that would compromise my work as much as i could (as it was already a huge challenge/effort).

all the best with your decision,

;) melissa

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Hi, Cardiactec, LukkyChrm, and Amby:

Thanks for your input and advice! This really is a tough one. My instincts say go for it, but I don't know how this will affect my already declining ability to work.

Cardiactec, it really is a small world! I met Dr. Bonyhay when I was there in November and have emailed back and forth with him a few times. He seemed really great, and it's good to know from your experience that is indeed the case! Your description of the mental test had me laughing to the point of tears. Maybe it won't be so bad if they aren't expecting accuracy, lol.

They'll be doing that needle in the nerve thing, too. That didn't sound particularly pleasant!

Looking at your heart rates (which are always so crazy high, you poor thing), they make sense to me. Your lowest heart rate was basically when exposed to discomfort/pain. POTS folk are some of the toughest people I've ever met when it comes to bearing pain and discomfort. I think it reflected your best tolerance was to those external factors. It says to me that our systems are not overreacting to physical stressors. The second highest heart rate was to mental stressors, which would reflect the research that shows that vasculature expands when a person concentrates, and that for us is a very bad thing. That would support many statements by people with POTS that they become symptomatic when they are in a situation that requires mental energy. Then, finally, the highest heart rate was when they (if I understand this correctly) pulled the blood into the legs through negative pressure, which would be closest to of the three to orthostasis, our #1 enemy. ;)

What do you think? I'm sure you've thought about this a lot!

I haven't gotten the call from Dr. Bonyhay yet today, but my brain is fried, so I kind of hope he forgets until tomorrow!

Hope everyone is having a "good" day!

Deucykub

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Hi, Melissa:

Thank you so much for sharing a bit of your precious energy with me, as well as your insight. It is so great to see you on these forums again and to know that you are back home surrounded by friends and family.

I'm almost positive that work will be more difficult for a while if I do the research, but then, the other side of me wonders how much really could I lose if I'm only working 3 hours a day, 3 days a week. The other side of me (yes, I have three sides B)) couldn't care less at this point about work because I am just furious at management for my current situation, which is such a mess. ;)

My attitude toward research mirrors yours. I'd like to get some understanding of my body, because I'm the type of person who, when faced with a problem, will study, research, test, and try until the problem gets solved. I have to be in a state of action. Plus, the benefit to all of us as we choose to participate will one day be a discovery that will help someone, somewhere feel better. My coping strategy throughout life has been, when faced with a traumatic experience, good could come of it through using that experience to help someone else, and that spills over into this decision, too.

You remain in my prayers for peace, joy, and recovery.

Deucykub

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Hi Deucykub ;)

Interesting research, could be exhausting for you, but you should balance the positive and negative part of it and decide upon the results...

I am also a person who wants to understand her body, study, research, test...

From my point of view, if I had been suggested such a test, I would go for it.

First because I prefer knowing more about my health and body.

Second because my work (all works) do not bother about my health. A job can be changed, my body not.

There is a chance to getting a better treatment, at least to understand your health better. Excellent option.

It is always nice to collaborate with specialists to get more information in order to help other patients with our conditions or similar ones. Congratulations for having the opportunity.

Of course, as mentioned by Cardiactec, always check that your changes are closely followed up and that you will get the appropriated help when feeling sick, etc.

Please, if you decide going, tell us when it is going to be held in order to send you some positive vibs and thoughts.

Hugs

Take care

Love,

Tessa

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Honestly, this is a decision that only you, alone, can make for yourself. You need to think out all the pros and cons and decide if it's "worth it" for you. I've participated in research, but have also turned down a few studies b/c I felt that it would have taken too much out of me.

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Hi,

I also did part 1 of the research at BIDMC. Dr. Bonyhay and Dr. Gibbons were there for the research. They wanted me to come back for part 2 but my deciding factor to say no was that they were using a medication that is not FDA approved for any use except for in this research...That was just my personal reason for declining...if there was approved meds being used I might have said yes, who knows, I have been feeling pretty horrible lately..Anyhow, best of luck to you and whatever decision you make! :P

Jacquie

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LThomas, they are most certainly looking for as many subjects as possible. i would contact Beth Israel about participating....i'm 100% sure they will take you. i am good friends with the research assistant of the POTS research and he just told me a couple days ago that they are currently trying to round up a bunch of subjects for their study......

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I just wanted to add that when I participated in an week-long study at NIH in 2000, I got an extensive report of all their findings and even a set of color print outs of my PET scan of my heart. It did take 6 mos to get the report, but considering all the info in it, I was okay with that--and that it was free (well, if you consider me "donating" a week of my life and using my body and a pincushion as "free" :rolleyes: )

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Guest tearose

What did you decide?

As I think again about all that you will go through, I am reminded that when I first had symptoms I was more eager to get information. Now that it is many years later, I am both tired of all the testing and I know a lot more. So, I still think you should go for it since you will learn a lot about the status and function of your own body. You will eventually, probably, need or want to repeat this kind of workup every several years. (for example, I waited four years for my re-testing)

so...what did you decide?

best regards, tearose

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This should be addressed on a case by case basis. I am in a year long clinical study for my immune deficiency. My doctor is trying to get a product approved by the FDA. Since I am not able to work I was able to participate in the study. Also, since I am not able to work I feel as if I'm contributing at least something to society as well as helping my peers and researchers.

To answer your question...if you go off your meds it will be rough but are you able to bounce back once you start taking them again? Are you willing to feel lousy for a few weeks to help?

This year long study was a huge committment and I thought about it long and hard.

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  • 2 weeks later...

Hi, everyone:

Thank you so much for all of your replies. I want to take the time to respond to each of you, but I am not in the best of health these past couple of weeks. However, I did just hear back from Dr. Bonyhay, and he has given me the okay to pass along his contact information to anyone interested in participating in the study.

If you would like his contact information, please feel free to PM me.

I have decided to participate after talking to all of you, my other doctors, and my family. It's worth the risk to have even the chance of learning more and feeling better again.

Thank you, thank you, THANK YOU for all of your input. You guys are the greatest! <_<

Take care!

Deucykub

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