ENROLLED IN A MAJOR CLINICAL TRIAL FOR MIGRAINES

DO YOU THINK CLINICAL TRIALS ARE WORTH THE COST?
1
YES - 50.0%
0
NO - 0.0%
1
DEPENDS - 50.0%

 
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CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 3/9/2007 9:04 PM (GMT -6)   
Hey Guys,
 
I'm going to do my part to help the Migraine community find a solution, hopefully a partial or permanent cure for the existance and/or frequency of Migraine attacks.
 
On Wednesday, I saw the leading neurologist, Dr. Ivan Login, at the University of Virginia Medical Center.  Yes, I'm going to be a guinea pig.  This clinical trial, M.I.S.T.II, is being conducted in a number of Medical Centers across the country.  This study is a combination of Neurology and Cardiac Disciplines.  I am only the fifth or sixth person he has found to enroll in the trial in his location.
 
Before we are born, there is a hole between the two sides of the heart called a DPO.  At birth, this hole usually closes up, but sometimes it doesn't close.  This happens in about 6% of the population.  However, within this population, this hole fails to close 60% of the time in people that suffer from migraines.  The purpose of the Clinical Trial is to determine if closing the hole will reduce the frequency and/or severity of migraine attacks in this population.
 
In order to qualify for the Trial, you have to have taken preventative medications in three different catagories, and failed to receive any benefit from taking them.  To find out if you have this hole (DPO), they draw a vile of your blood, the add some water to it.  The blood is then shaken violently to create micro-bubbles.  This blood is then sent up through a catheter into the heart to see if it exits on one side or both.  If the hole exists, a device with a little double umbrella is inserted into the heart.  Once it is threaded through the hole, the device pops open like an umbrella, then it is pulled back through, where the second side pops open.  Then the two sides are screwed tightly together to close the hole.
 
After the procedure is finished, the patient is tracked to see if closing the hole has eliminated or significantly reduced the number of migraines the patient experiences.  If the test is proven successful, then those patients who got the placebo will get the procedure to close the hole. 
 
The only reservation is that it's going to be a pain in my butt to round up my medical records, because in order to start the trial, you have to supply your list of failed medications, length taking them, who prescribed them, dosages taken, etc...  Heck, for me this goes back a lot of years, so getting the documentation is going to be a real drag.
 
Anyway, wish me luck folks as I'm doing this for you guys too!!!
 
Leigh Ann cool
 
By the way, if you want to find out more about the study, or thinks you might be a good candidate, check out this link.
 
 


"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett

Post Edited (CRANKY 1) : 3/9/2007 8:35:23 PM (GMT-7)


Annuk
Veteran Member


Date Joined Jan 2006
Total Posts : 1308
   Posted 3/10/2007 7:14 AM (GMT -6)   
Wow Leigh Ann, after a visit to the Cardiologist recently he has decided that he wants me to have the Bubble Echocardiogram to test for the PFO(Patent Foremen Ovule) too!!!!

My scan will not be done under a trial though as yours will be. Mine will be done as part of investigations into my heart murmur and recent reactions that I have had to some migraine drugs from a cardiac point of view, and also I am having investigations for possible coronary heart disease!!

My son has Migraine with Aura and he also has a small hole in his heart, but it is too small to see on the scan, but the result of it can be seen and heard on the scan!!!

We shall have to compare notes at some point!!

take care

Ann
Co-Moderator of the Migraine/Headache Forum


AngMichelle
Veteran Member


Date Joined Apr 2006
Total Posts : 932
   Posted 3/12/2007 9:24 AM (GMT -6)   
is it worth having this test(for me) even with no signs of murmur or any other heart effects? will insurance pay for it you think? I'm desperate. my migraines have gone back to about 3 a week. I'm just tired.
thanks for the info, and good luck to the both of you.
Ang
DX-Migraines:Poly Cystic Ovarian Syndrome:Kidney stones: IBS:Ulcers:Depression/Anxiety:Non-Epileptic Seizures:Buldging Disc:Joint pain (I'm only 22!!)
 
Surgeries- two jaw surgeries, appendectomy, numerous lap. surgeries, ovarian cyst removals
 
Meds: ProzAC 20mg, Klonopin 1mg BID , Ambien 10mg
(PRN- Imitrex INJ, Pherergan, Stadol NS, DiaStat,)
 
May God give you a reason to smile today, an extra reason to laugh, and bring joy to your soul.


CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 3/12/2007 1:35 PM (GMT -6)   
Hey Ang,
I don't think your insurance would cover any costs of the test since you are not showing any sign of "cardiac" problems.  However, if you applied and are accepted into the trial, all the costs would be covered by the trial grant.
 
Good Luck!
Leigh Ann cool

"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett


somedayishere
New Member


Date Joined Jan 2007
Total Posts : 18
   Posted 3/19/2007 12:00 AM (GMT -6)   
Hi,
  Would you  feel comfortable listing  the cardiac symptoms that you have experienced ? I have a heart murmur and a slight mitral valve prolapse . I have had an echocaridiogram but it was not done with contrast. I'm not really sure if that makes a big difference. I also have a family history of heart disease. I am wondering if I should check all this out further  as I also have been through all the migraine meds with no significant releif. I hope your medical record retrival goes well and the sthat the study is of great benefit to you.
 
God Bless - I will keep you in my prayers
Melissa

CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 3/19/2007 10:53 PM (GMT -6)   
Hey somedayishere,
 
I think that any cardiac information which would affect the study would be included as questions on the study application.   There are so many different parts of the heart, I think this study is very specific to the DPO (hole between the two side of of the heart).  Since everyone is born with this condition, and the automatic closing at birth is the normal condition, I think that the study is only concerned with that specific condition, and the number of migrainers that still have the hole open.  Then whether the candidate is viable for the arterial DPO closure procedure.   I don't think those other conditions would make any difference to this specific trial.
 
Heck, I've been trying to get my documentation together first, cuz if I can't get that, there's no point in filling out the questionaire.  I would really hate to go through the procedure getting the "placebo" procedure.  
 
Geez, I hope I qualify and get the real procedure first.  I had a migraine yesterday that went away fine, but came back last night, and my parents refused to take me to the ER.  I finally called them again at 7am to get them to take me to the ER.  I think I was there about five hours, cuz after they gave me a shot of Dilaudid and Phenergan, I crashed and burned.  They make you stay 30 minutes after the shot to make sure you don't have any bad reaction.  When the doctor asked me what usually worked I told him 3mg of Dilaudid, which works far better than the 2mg I usually get.  I have really low blood pressure to begin with, but when the nurse came to check it out, they had to wake me up to do it, then the highest reading they could get was 84/46.  The doctor wouldn't let me go with it that low, even though I said that the number was common for me after a shot.  I had to get an IV of fluids for an hour before they would let me go.  That was about noon, and I had a DR appt. with my regular PCP at 2:30pm, and I was way too out of it to go.  Now I've got to get another appointment which will take weeks.  Bummer!!!
 
Let me know if you think you qualify for the study.  I'll let you know if I can collect all my medical records together to apply.
 
Leigh Ann cool
"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett


somedayishere
New Member


Date Joined Jan 2007
Total Posts : 18
   Posted 3/21/2007 12:49 PM (GMT -6)   

Hey Leigh Ann,

      I think I might qualify for the study so I wil follow the link and see what happens. It never hurts to try !! I have been having a rotten few weeks. I got the flu and then it turned into pneumonia. All the coughing set off my migraines and I was to the point that they were going to admit me for a DHE series. The ER doc that I know quite well took pity on me and gave me a mega painshot, some steroids and a DHE injection and so far I have had no HEADACHE for 2 days . So I am hoping that it stopped the downward cycle.

  Good luck getting your records . You might want to try going through your PCP if they have any copies of any consults that you have had. It might be easier than contacting every physician. Hope that is helpfull. Let me know how it goes.

 

God Bless - I'll keep you in my prayers

Melissa


CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 3/21/2007 7:07 PM (GMT -6)   
Hey Melissa,
 
Just for your information, your PCP's office can only give you records that they generate.  Even if you have records transferred from another facility or from a referral, your PCP's office can't give you copies of that information.  You have to go to the original source.  It's pretty stupid if you ask me, but that's the deal. 
 
Thanks for the suggestion,
Leigh Ann cool
"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett

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