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ajnozari

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Reply with quote  #1 
I'm currently a graduate student at the USF Health Morsani College of Medicine and am looking to enter medical school this upcoming year (several applications still pending) or next year (should I not get in this year) and I was wondering if anyone knew of any CVSA research going on in the Tampa area.  I am a lifelong sufferer of the condition and would like to give back to the community that helped me find a doctor who understands and is willing to treat me.  My neurologist was the one who confirmed my diagnosis with CVS and nocturnal migraines.  Thank to her treatment I have been able to deal with my cycles (best way I can describe it) and am able to lead a normal life.

It was because of the Tampa group reaching out and getting the message out that my mother was made aware of this and after finding my now current neurologist (for a second opinion as all other doctors said I was faking due to lack of traditional chronic migraine symptoms) who agreed that not only did I fid the (condition, disease?) but that it combined with a REM induced nocturnal migraine disorder.  Now I'm working on my masters and am applying to medical schools.  I'm focusing on neurology and would like to be able to help with research but I don't know where to look so I figured that I would come here.

My intention are that should I not get accepted into medical school this year I would like to do research while applying on the next cycle.

Thanks for any information on researchers or physicians in the Tampa area

-AJ N.
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esoteric

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Reply with quote  #2 
I might start with contacting the CVSA office, they might have some directions for you.  I do not know of a particular organization in Florida.

I am so glad you were finally diagnosed correctly. Sorry to hear to get to that point you faced tremendous hardship.  Thank goodness you are well and looking to attend Medical School!  I wish you the best.  We need understanding Doctor's that are educated in this so much!

My CVS has a high migraine variant as many others.  Would you mind sharing about the REM Induced Nocturnal Migraines?  We have a lot of sufferers who have have episodes in early morning hours or wake them in the middle of sleep, including myself.  Sharing here and giving us insight about your story helps all of us.

Thanks for stopping in and sharing.

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Kim

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hope7511

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Reply with quote  #3 
Yes please do share if you could. My boyfriend wakes up with horrible migraine every once in a while and 90% of his episodes start in the morning. He is down right now. Throwing up every 3 to 5 minutes . He's back to being down every other week. I hope your schooling goes great and you get what you wish for! One day at a time. I will pray you find something with CVS in Tampa area
Thanks so much
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ajnozari

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Reply with quote  #4 
Thank you for your responses and I will be happy to share.

After a few MRI scans it was found that my midbrain, which plays a huge role in REM sleep, and the occipital lobe are both rather large and close together structurally.  Because of this when neurotransmitters are released there is some overlap.  Since REM sleep relies on dopamine, which is also a common transmitter for the occipital lobe, should I stay awake too long (e.g. all nighters) or have too much visual stimulation (or a myriad of other triggers XD) I begin to get a migraine focusing on my frontal lobe and my occipital lobe.  Now what's funny is that the optic nerves run through the frontal lobe (through several chiasms) and then into the occipital lobe.  When overstimulated both of these regions are literally at a tipping point.

Now when you don't sleep regularly, or get overexcited/overstimulated, or are overstressed, your body tends to go into REM sleep faster so it can process and work through things faster.  In order to do this it has to release more dopamine.  However because of the migraine nature of my cvs there is some crosstalk going on that triggers the migraine in my frontal/occipital lobe (not sure which one is the actual cause but structurally everything is kinda mashed together in there).  This is added to the CVS which causes me a distinct level of nausea/vertigo but I can usually manage it pretty well.  The only times it gets (really) bad is a few days before and after a migraine episode and I'm actually able to use it as an aura to tell if I'm going to have a migraine, then I usually take my meds and am able to avert the migraine.

I am fortunate that I was able to figure out a solution that works but it was a long road which has left me with some insomnia due to a fear of sleeping since my migraines have happened between 3-6 am for my entire life, only once have I triggered during the day and that was when I was 9.  I found my current neurologist (who also has fellows in internal medicine) and my mom brought the information about CVS with us (I was 15).  The neurologist got online and agreed that while my symptoms fit she wanted to get an MRI to rule out any structural defects.  While there are no visible defects (thank god) my brain is rather large for my head, which is funny because of my big head [tongue].  This is what enables the crosstalk to occur as everything is rather tight (I have very little space between my brain and skull, if I can find my MRI CD I will post a picture).  A rather good explanation is like two kids in the back seat of a car with the classic "I'm not touching you", "Yes you are" routine.  Even though there is no direct contact there is some pathway that connects the two (like a seat) allowing them to be physically connected.  Strange but easiest way to explain it without the detail above.

The best thing to do if you have a migraine portion is to cut the caffeine from your life and reduce your exposure to electronics as much as possible late at night.  If you do watch TV try to set the color mode to the warmest possible.  This will be the setting that looks very rich with deep colors but the whites a yellowish color.  This helps your brain get ready for sleep and reduces eyes strain at night (which funny enough is one of the causes of my migraines).  It is also a good idea to see a neurologist (if you haven't already) and have them do their thing (which might include an MRI) just to make sure everything is ok up there, especially if it is disrupting your sleep/REM.  If nothing is wrong at least you've crossed one more source off the possible cause list (for yourself).

I hope this helps, let me know if you want any more information/details.

-AJ N.
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MiamiLargo

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Reply with quote  #5 
Hi AJ!  I am writing several years later, looking for any Florida experts on CVS.  Have you moved forward with your medical school?  Have you found anyone you could recommend?  We are having a lot of trouble finding a recommended Adult CVS doctor anywhere near Miami.  Thank you!!
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ginny

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Reply with quote  #6 
As AJnorzari is no longer a member of this message board, it might help to call his school and ask if they have information to forward your request to him.  You might also try a search for the last name  Nozari first initial A. I don't know that his is his name but it is a start.  Once someone leaves the message board I can no longer access the registration information available.

I don't recall these posts but find them very interesting. Please let us know if you do reach him (or her).



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ginny CVSA Moderator
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wynnak

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Reply with quote  #7 
My go to is Pub Med. you maybe able to look for Dr. Yvette or the CRF factor as well there..

I tried Nozari and any publications for him.. then you can click on just his publications that he is noted on..

https://www.ncbi.nlm.nih.gov/pubmed/?term=Nozari%20A%5BAuthor%5D&cauthor=true&cauthor_uid=29923954

Hope that helps.

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Blynda
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