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Apprentice
Picture of hope2bvertical
Posted
I have been frustrated with my lack of migraine control recently, but have come up with a list of excuses. Recently I starting seeing an endocrinologist for strange blood sugar issues. All of the tests kept coming up abnormally abnormal, so the doc told me I was his challenge of the week. (used to that, I have FHM also) So he offered to give me one of two diabetes medications to try or he could keep researching. I am not into meds and take enough already so I opted for the keep researching.

He ran a few tests and repeated a few that needed repeat for confirmation. It turns out I have hyperprolactinemia. It is a high level of a hormone released by the pituitary gland, or control center of the brain.

When I researched it I was amazed at all the things in can do to your body, including triggering migraines! Several of the things I had written off to med side effects, are actually symptoms of high prolactin, like feeling hungry after I eat, weight gain, elevated body temperature, etc. It can also cause depression, anxiety, fatigue, irritability, changes in menstraual cycle, heart disease, osteoporosis, etc. The pituitary affects appetite, thirst, sateity, body temp, metabolism, sex hormones, and on and on. Wow.

Then here's the kicker. In my research I learned more about migraines and the hormones involved than I had ever known. For instance, when prolactin is high, your body releases dopamine to compensate and drive down the prolactin. Several of the medicines used to prevent migraine work because they are dopamine antagonists, in other words they lower dopamine. Therefore, they have the propensity to cause prolactin levels to rise, which is treated by giving dopamine agonists, to raise dopamine and lower prolactin. Anti-depressants, anti-emetics (nausea), anti-seizure meds, and verapamil among others are all meant to lower dopamine, so therefore can raise prolactin. So here we go with a vicious cycle again.

Hyperprolactinemia can be caused by a (usually) benign tumor, so I will be having an MRI on Monday. However, being that I was on verapamil and nortriptyline, I am thinking that could be the cause and have been taken off of them for further testing. Also, these kind of tumors can be secreting and yet be too small to pick up on MRI.

The big question then will be, if the meds are causing it, what can I be treated with preventatively, and PLEASE don't take away my phenergan or compazine!! So I have a follow up with my migraine doc the week after the MRI.

I thought this would be very interesting and helpful to share here because I have never heard it talked about before. I will update you after the MRI and return visits with both docs, whom I will ask to talk to each other before they decide on something for me.
 
Posts: 185 | Registered: 01-16-2007Reply With QuoteEdit or Delete MessageReport This Post
Sage
Picture of jennyc
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My father had a benign pituitary tumor that caused the symptoms you described! We discovered it when he began having seizures--petit mal seizures, not the kind that make you fall on the floor and shake...When seizures occurred for him, he told us he knew something was wrong or strange. He often sat and stared and felt "gray and fuzzy."

He takes daily medicines now to treat the tumor. The meds initially shrank the size of the tumor. Now they work to keep it small so it doesn't cause problems. For a while, he was not permitted to drive (due to the seizures). But when he'd been seizure-free for several months, his license was given back.

His medicine is working well now. He has routine blood work to look at his prolactin levels. He also has routine MRI's.

But my Dad was never a migraine sufferer!

Please let us know what you find out!!!

Heartjenny
 
Posts: 1084 | Location: PA | Registered: 07-03-2007Reply With QuoteEdit or Delete MessageReport This Post
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Supreme Guru
Picture of dragondroolHOST
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Wow! Those hormones are always such fun to sort out, aren't they?

I will root for you with every ounce that is droolie. Let us know how it goes, okay?



Dragondrool
Forum Moderator


~~8=:>>>>
 
Posts: 3278 | Location: Montana | Registered: 01-11-2007Reply With QuoteEdit or Delete MessageReport This Post
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Grand Wizard
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Good job on doing your research. Please keep us posted on your MRI and follow up visits Fingers Crossed


Laura
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***You're welcome to enter your birthday, etc in the Celebrate folder so we can party with you!! =) ***

 
Posts: 2456 | Location: Virginia Beach, VA | Registered: 05-17-2007Reply With QuoteEdit or Delete MessageReport This Post
Master
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I had Hyperprolactinemia due to a MMR vaccination. If I understand correctly, I had tiny little nodules at the base of my brain. Fortunately, it wasn't a tumor & I just had to take medication for several months. If I understand, Hyperprolactinemia is rarely caused by a tumor & is usually treated by oral meds. Physical & mental stress, stimulation & meds can all trigger this.

My gynocologist thought maybe this was causing my recent problems, but I think my blood tests came back normal, cause I didn't hear anything.

Good luck with your tests & keep us posted.
 
Posts: 275 | Location: Boston, MA | Registered: 05-10-2007Reply With QuoteEdit or Delete MessageReport This Post
Grand Wizard
Picture of MaxJerz
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quote:
Originally posted by LauraHOST:
Good job on doing your research. Please keep us posted on your MRI and follow up visits Fingers Crossed

Yes, do please keep us posted.


-MJ

my blog: http://rhymeswithmigraine.blogspot.com/

Why do I capitalize Migraine?

Hope can grow from the soil of illness! http://www.InvisibleIllness.com

"What will you do, if it does not turn out how you expect?"
"I do not know. Nor shall I worry about it until it happens. I still have an action left to take; until I have exhausted it, I shall not despair." - Robin Hobb, Assassin's Quest
 
Posts: 2203 | Location: western WA | Registered: 06-01-2007Reply With QuoteEdit or Delete MessageReport This Post
Wizard
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Wow, who'd've thunk? Let us know!


Deb

[url=http://www.TickerFactory.com/]
 
Posts: 1818 | Location: St. Louis | Registered: 01-13-2007Reply With QuoteEdit or Delete MessageReport This Post
Apprentice
Picture of hope2bvertical
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Millsy,

I was totally confused to, going up and down. What does this one do to that one and so on. That is why I spent so much time looking it up different ways, and reading over and over and over. I want to be as informed as I can be when I start questioning the docs because I really don't like to go and accept blindly, especially since so many doctors would be happy if they can just throw medicine at it and make us go away. Since this is going to effect my migraine, I want to be sure it does not go the wrong way.

As best as I understand at this point, most migraine meds are dopamine antagonists, which mean they lower the levels of dopamine. This allows/causes prolactin to go up. When they treat hyperprolactinemia,(high prolactin) they use meds that raise dopamine because that lowers prolactin, which also shrinks the tumor if there is one.

I don't remember reading anything about the cancer connection, but admittedly I wasn't looking for it, I was concerned with how it affected my head and my meds, and the other strange things that were happening. I do think if I would have read cancer, it would have stuck out, but I don't know.

There are still a lot of questions in my head, trust me, but those are left for my appointments with the doctors.

I appreciate the responses from the rest of you also. As I learn I will share it. It is tough waiting for the answers, now that I have the door open I am anxious to go through it. Smiler
 
Posts: 185 | Registered: 01-16-2007Reply With QuoteEdit or Delete MessageReport This Post
Community Manager
Guru
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Hi Hope

An elevated prolactin level could trigger a Migraine attack, not cause Migraine disease. Not to be picky, but there is often confusion about the difference between triggering an attack and the cause of disease. Hormones can play a role in triggering our Migraines. This would be a great question for our expert Ask the Clinician Dr. Krusz. He is very interested in endocrine issues and Migraine disease.

I had some prolactin issues about 20 years ago, and my doctors continue to check it on a regular basis.
 
Posts: 2682 | Location: New York | Registered: 01-11-2007Reply With QuoteEdit or Delete MessageReport This Post
Apprentice
Picture of hope2bvertical
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Sorry Nancy, I do stand corrected. When I said cause I meant it as trigger, but that would be very misleading to others reading here.I even had to go back and read my post because I couldn't believe I said that.

I had a friend that was so excited and said wouldn't this be great if this fixed it and you could be back to normal. (Normal?hee hee) Anyway, she was meaning that the migraines would be gone, and I pointed out to her that migraine is a genetic disease, it exsisted before, it will still be there, but what I am hoping for is that things will go back to the way they were when I didn't get them so often.

I will edit my original post, thanks for catching that.
 
Posts: 185 | Registered: 01-16-2007Reply With QuoteEdit or Delete MessageReport This Post
Apprentice
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Hey. Interesting post!!

Through all of my wife's health issues we have come to learn that many things can affect migraines! It is my belief that health issues can feed off eachother and turn into a viscious cycle.

My wife's lupus definately affects all her other health issues but what I found interesting was when she was diagnosed with Conn's Syndrome (which is an endocrine issue)the Endo guy told us that the syndrome was causing her hypertension, low k levels, fluid retention (although her severe kidney issues from lupus mess with that too), and that it was VERY likely was triggering her migraines(like you Sol gets FHM attacks). The cause of Conn's? Benign tumors on her adrenals but for now they are using meds to control it since we're not sure another surgery is wise right now.

Just a few weeks ago we found out that her sugar levels are wacked and she may be diabetic but they are running more tests before cementing that in her records. She is also severely hypothyroid but they aren't sure if that is a separate issue or if the lupus made her body attack her thyroid.

My point? Seems like ENDOCRINE issues may truly have a connection to migraines. Maybe I just want to connect the dots but like I told Sol where there is smoke there is usually fire so who knows?

At any rate, thanks for posting about what you have been going through. Sol says to tell you that you are in our thoughts and prayers and that we hope it all gets figured out soon.

Peace,

Dave
 
Posts: 206 | Location: with solveig | Registered: 02-03-2007Reply With QuoteEdit or Delete MessageReport This Post
Apprentice
Picture of hope2bvertical
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Thanks for the reply Dave, and please tells thanks for her good thoughts as well.

I believe that as doctors and scientists learn more and more about our bodies, they are going to see more connections between everything. That is why it can be frustrating going to this specialist and that specialist because they each want to focus on their thing. I was so thankful this guy decided to take the whole medical picture into consideration.

I am not too worried about the MRI, I am still convinced the meds are to blame, but then I could be in denial too. Either way I will let you all know when I do. My follow-up with the migraine doc is not till the 10th, which should give him time to get the results, and then he can talk to the endo.

Thanks again to all of you for caring.
 
Posts: 185 | Registered: 01-16-2007Reply With QuoteEdit or Delete MessageReport This Post
Community Manager
Guru
Picture of Nancy Bonk
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I'm keeping my Fingers Crossed about the MRI too Hope.

Dr. Krusz is very interested in the endocrine system and how it effects Migraine disease. He really is on the cutting edge of Migraine disease.

Dave and Sol-

Eeker Sending good cyber vibes out to you all.
 
Posts: 2682 | Location: New York | Registered: 01-11-2007Reply With QuoteEdit or Delete MessageReport This Post
Apprentice
Picture of hope2bvertical
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MRI got rescheduled to Thursday because insurance hasn't apporved yet, but the office says they can still get the report to the neuro by the tenth.

I have seen Dr K but didn't know he was so in to the endocrine system. Depending on how this all goes, I may have to plan another trip to Dallas. Thanks for letting me know.
 
Posts: 185 | Registered: 01-16-2007Reply With QuoteEdit or Delete MessageReport This Post
Apprentice
Picture of hope2bvertical
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Finally all the information is in. The MRI was fine as far as the pituitary is concerned. So they re-ran the blood work after I was off Verapamil for a month and surprise surprise, my prolactin is normal now. Both the neuro and the endo tried to tell me that verapamil doesn't cause elevated prolactin, but everything I found on the web says that it does. So I printed three of the studies off and took them to them. I think it is a little to huge to be a conicidence, the numbers didn't just flucuate a few points, and they have been high for almost a year.

Since I had been off the verapamil for a week I have not had an HM and the migraine I did have was mild and responded to treatment. This got me to thinking The first time I had Botox I went two and a half months without a HM and only a few mild treatable migraines. My doc kept insisting that I get on the verapamil for a back up so I finally gave in to humor him. Since then I have only gotten a few weeks at most usually less in between. I can do the math. (and yes, shame on me for humoring the doctor against my wishes and judgment. After all, "he is the doctor" right?)

I found it interesting that never seeing this covered before, someone new here started a thread with a similar issue (YIPEEEEE-finally some GOOD news!) and how now that her tumor is shrunk she is anxious to be able to take a preventive.
quote:
At least now we can find something that works on these blasted migraines without having to worry about the tumor.


All in all it is good news and emphasizes our need to advocate for ourselves.
 
Posts: 185 | Registered: 01-16-2007Reply With QuoteEdit or Delete MessageReport This Post
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