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Topic: Hormone profile for chronics? (Read 383 times) |
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Katherinecm
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Hormone profile for chronics?
« on: Nov 9th, 2007, 7:19pm » |
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Hey guys,
It's been a while since I've been here but today I went to see this a holistic (wholistic??) endocrinologist who had some interesting ideas about hormone imbalances being a trigger and I want your opinions on this. Now a while back I remember talking with some people on the board about that testosterone study and how in a certain number of treatment-resistant men their testosterone was low, when the levels were normalized they went into remission? Does anyone remember this?
So we chatted for a while about this and how she went to this endocrinology conference a few months ago about hormonal basis for headache disorders. She mentioned that while she personally had never tried to treat cluster headaches, according to the speakers at the conference in their experiences it did help their patients. She had no details about this or studies, at least not available today.
She has successfully treated migraines in two women. She mentioned a book called "The Migraine Cure" that is written by someone who uses this type of treatment in their practice. It has very mixed reviews on Amazon.
I got a hormone profile last week and the lab results back today, and no surprise given the vast amount of prednisone I have taken, my hormones are completely messed up. She suggested I start with a simple hormone that is a building block of the others, take it for 6 weeks, go back for retesting, and we'll keep adjusting amounts until my hormones are normalized. She's hopeful but making no promises about the headaches but she does think that at the very least I'll have more energy and be better emotionally prepared to deal with attacks once everything is back in the proper ranges.
The initial hormones were $14 total (not even enough to bother submitting an insurance claim for), so even if this is total quackery I think it's a worthy experiment. I'm just wondering if anyone else has experimented with this since those testosterone studies came out and how it worked for them? Have you read the suspicious-sounding book?
I've known since I had very painful periods at age 12 that my hormone levels were messed up, but ever since I learned about CH I figured that a problem in my hypothalamus was causing the hormone problems, not vice-versa. Is it possible it's this simple?
Thoughts?
Katy
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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
"It is not death or pain that is to be dreaded, but the fear of pain or death." Epictetus
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vietvet2tours
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Re: Hormone profile for chronics?
« Reply #1 on: Nov 9th, 2007, 7:21pm » |
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Smells like a duck.
Potter
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Jill
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Re: Hormone profile for chronics?
« Reply #2 on: Nov 10th, 2007, 6:13am » |
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Hi Katy,
I think, personally, everything is worth trying when it comes to having clusters. And if it isn't expensive and is not going to cause great harm in the long run, than go for it! It can't hurt to try at least.
I always wondered about hormones in clusters mainly because it seemed that mostly men get them. I do remember the thread that you are talking about with the testosterone levels because I took that to my doctor and had tests run. I believe that all of my levels were normal or had nothing to worry about. I wonder if others have had this tested.
As to the other hormones, about three years into being chronic (I have been chronic for six years, since they started) I was diagnosed with hypothyroidism. I know that that is a hormonal problem but mostly relates to metabolism and mood.. I have not noticed an effect on my clusters since being on medication. My levels have all been normal now and yet I still get hit as hard. I was hoping that it would reduce them though. 
Anyways, we have to look everywhere for answers and, like I said, it can't hurt to give it a shot. I wish you luck and please let us know the results.
Thanks
Jill
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"If you learn from your suffering and really come to understand the lesson you were taught you might be able to help someone else who is now in the phase. Maybe that is what its all about after all.."
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jackieg
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Re: Hormone profile for chronics?
« Reply #3 on: Nov 10th, 2007, 9:18am » |
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Jill,
I am heading in the same direction as you. I have always believed that my CHs were hormonally related. My first 2 cycles ended after I received a progesterone injection 20 years ago. Another cycle abruptly ended the minute my daughter was born and that ended up being one of my longest remission periods (3 years).
When not in cycle, I often feel CH-loke pain during menstruation. I have been in contact with a doctor who specializes in women's health, wellness, and a unique form of hormone therapy at a headache and wellness center in Michigan. He is a well established MD, OBGYN. He has devoted a great deal of time and research to helping women with headaches and other hormone issues. He uses a combination of of techniques tailored for each individual, rather than the guinea pig treatment we have all received from the neuros. He has successfully treated men with CH with testosterone and nutrients and has treated 5 females with CH with some degree of success. I loved the fact that he actually got on the phone with me and listened. He did not profess to have a miracle cure or even say that he could definitely help me. He simply stated the facts and was very interested in me and how I felt, not pushy or arrogant. I did some research on him and was very impressed As for my history, I have been on every medication and have tried every therapy out there and have gotten little relief. This cycle I have taken a completely different approach. I am taking no medication, including Imitrex which has aborted most attacks. I am using O2, caffeine, and experimenting with RC seeds. Although I am still being hit with the headaches, I am noticing something considerably different this cycle. My hits have been coming exactly the same time every night for several weeks. I can manage them for the most part and abort them in 10-20 minutes by breathing O2, applying ice packs, and running in place. Although this is an inconvenience, I feel good during the day. People who know how I get during headaches are surprised at how good I look this time with no meds. When on the various medications, the hits come at all times during the day and I feel mentally and physically drained and completely out of control. Not to mention, I am a complete bitch and a zombie. My cycle also seems to go on forever as the medications are increased. I am looking forward to learning some new things.
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E-Double
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Re: Hormone profile for chronics?
« Reply #4 on: Nov 10th, 2007, 9:57am » |
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Far from a duck since the theory behind our headaches being related to related to hypothalmic impairment is gaining steam
Quote:Cephalalgia
Volume 13 Issue 5 Page 309-317, October 1993
To cite this article: Massimo Leone, Gennaro Bussone (1993)
A review of hormonal findings in cluster headache. Evidence for hypothalamic involvement
Cephalalgia 13 (5), 309–317.
doi:10.1046/j.1468-2982.1993.1305309.x
Prev Article Next Article
Abstract
A review of hormonal findings in cluster headache. Evidence for hypothalamic involvement
Massimo Leone, Gennaro BussoneDepartment of Neurology, "Carlo Besta" Neurological Institute, Milan, Italy
Gennaro Bussone, Department of Neurology, "Carlo Besta" Neurological Institute, Via Celoria 11 Milan, Italy.
Abstract
The cause of cluster headache remains to be determined. The involvement of peripheral neurovascular structures can explain the pain and autonomic signs of a cluster attack, but not its rhythmicity. The central theory of cluster headache attributes the cyclic recurrence to involvement of the hypothalamus. To evaluate hypothalamic dysfunction a number of hormone studies have been carried out on cluster headache patients. Alterations in plasma melatonin, cortisol, testosterone, gonadotrophins, prolactin, growth hormone and thyrotropin have been documented, some only in the cluster period but others in the remission phase of the illness. We believe that the hormonal abnormalities in cluster headache support disorders of hypothalamic function |
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Katherinecm
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Re: Hormone profile for chronics?
« Reply #5 on: Nov 10th, 2007, 11:54am » |
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Thanks E-Double!
Jill- that was exactly my thinking. I'll let you know, but I don't get the impression this is going to be a short-term exercise. Rather than having her give me all the hormones that I need more of at once I am going to adjust only one at a time, and reevaluate adding more/another every six weeks or so. This was my choice and not her idea, so we know what's making the most difference and what's not worth it.
Jackieg- I had a very similiar experience. After having so many doctors with a God complex who were sure they could cure anything, and even the good ones mystified when various treatments didn't work, it was refreshing to talk to someone who really listened, and kind of encouraged me to make decisions about what to focus on first rather than dictating what was best.
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"We are not human beings having a spiritual experience. We are spiritual beings that have a human experience." Teilhard de Chardin
"It is not death or pain that is to be dreaded, but the fear of pain or death." Epictetus
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cash5542
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Re: Hormone profile for chronics?
« Reply #6 on: Nov 11th, 2007, 7:35pm » |
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My daughter Lisa has CH and is 22. I have migraines and they began the same year my period did. Two of my worst were during my first pregnancy. As I complete menopause my migraines are going away. Lisa has used high doses of prednisone for asthma for 16 consecutive months. The average dose was 60 mg. Her clusters began a year after she weaned from prednisone. She has been on birth control pills for medical reasons since she was 18 and only gets 4 periods a year. Research has shown asthma flares are more likely when hormones drop so this eliminates 8 periods a year. This past cycle she was lactating. No clue what that was about but may have been too high progestrone level. She is waiting for the test results. I think you may be onto something and am very anxious to hear what you learn. Keep in touch!!
Charlotte
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