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Renee
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Hormones and Clusters
« on: May 30th, 2004, 10:21am » |
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Thought some of the "family" might find this interesting:
One of my misdiagnosis prior to being diagnosed with clusters was hormonal problems, SO..had the full hysterectomy in 99 and went on HRT patch, estrogen only.
The clusters continued. After starting a headache journal this last fall and this spring i noticed the worst clusters were on the days i changed my HRT patch. So, I quit the hormones about 6 weeks ago and my chronic clusters did a 180 and I went from having several per day and living with a 24/7 kip2 to having 1-2 lower kip clusters per week with no hormones.
Very interesting but happy to have some pf time. Then the hot flashes became unbearable, the insomnia had me wore down and the bitchiness had me on the verge of firing many of my employees or them quitting SO...I went back on the HRT patch, 75% less strength than prior patch, on Tuesday. Lo and behold, the clusters came back yesterday and I'm living with a 24/7 kip 2 again even on 75% less level of estrogen.
Did a search on yahoo and google and found that hot flashes are believed to be caused by a "malfunction" of the HYPOTHALAMUS when estrogen levels are too low.
hypothalamus??? clusters??? hot flashes??
I got the correlation and decided some of you might find this interesting as well.
I took off the patch this morning. Will call doc on Tuesday to discuss and see what other alternatives are there to handle the hot flashes, bitchiness, etc. BUT I won't be using the HRT estrogen anymore.
This won't apply to the fellars, but thought the ladies might find this interesting.
Anyone else have the same type of story?
Anyone find a good alternative to estrogen HRT?
gonna live with the flashes and bitchiness for a lil while,
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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ave
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Re: Hormones and Clusters
« Reply #1 on: May 30th, 2004, 11:00am » |
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Yea, I did, live with bitchiness and flushes I mean.
It was my normal change of life, not surgically induced, but I had it bad just the same. I just stuck it out.
One thing I noticed, I knew it was hormone imbalance acting up. Whenever I was bitching I'd catch myself and say: hey, hormones talking. Amazing how easily the bad mood fell away. Mind over matter!
Also, now that the change is way behind me, my clusters have gone into lower gear. They are still there but they hurt very little. But maybe a few judicious doses of shriooms had somethat to do with it.
My clusters didn't start till after the change set in, after all. When my migraines stopped, I mean.
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Karla
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Re: Hormones and Clusters
« Reply #2 on: May 30th, 2004, 1:12pm » |
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Having a hysterectomy 4 years ago did nothing for my ch. I am one of the lucky ones to. I had no hot flashes or side effects or symptoms of methapause so I have needed no HRT at all. Seems like you got lucky.
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Karla
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Renee
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Re: Hormones and Clusters
« Reply #3 on: May 30th, 2004, 1:29pm » |
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uh...I know I still have some hormones in my system as I just yanked the patch this morning BUT...
I don't understand either of the above posts??
I don't feel very lucky, that's for sure and Ave, I'm totally confused as to how your ch was affected by menopause?
On top of it all, my gyno passed away on Tuesday with esophageal cancer. He's been my gyno for 25 years, the only gyno I've ever had.
The bitchiness is ONLY towards my employees, by the way. It is like I have no patience at all with them. I didn't know if I was going to terminate them first or they were going to resign due to my arse chewings.
It's as though i have to choose:
A. Hormones and constant clusters
OR
B. No hormones and insomnia, BAD hot flashes and bitchiness.
ugh and still fighting the ch as I post
renee
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miapet
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Re: Hormones and Clusters
« Reply #4 on: May 30th, 2004, 1:35pm » |
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Did you also have an overectomy? Hysterectomy vs overectomy/hysterectomy (commonly called a radical-hysterectomy) makes a big difference in HRT etc. Any woman considering this surgery needs to be VERY careful . .we can't get the hormone mix right for HRT. If there is any way possible do not do it . . .if you have no choice, if there is any way possible request every effort be made to save at least one overy.
*positive light and energy*
miapet
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pubgirl
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Re: Hormones and Clusters
« Reply #5 on: May 30th, 2004, 3:34pm » |
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We have been discussing CH and hormones on OUCH Uk recently as I am personally certain the frequency and severity of my attacks worsens premenstrually.
I don't believe hormones cause CH but I DO believe hormone fluctuations exacerbate the attacks in women.
Pasted below what our Brit version of Floridian posted on the subject which you may find interesting
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"It was the varying levels, responses and activity of a variety of hormones amongst CH sufferers that initially provided evidence that the hypothalamus played an important role in CH pathogenesis.
Firstly, it was found that there were much lower concentrations of plasma testosterone (amongst men) during an attack, further backed-up by studies showing alterations in a wide range of secretory circadian rhythms including; luteinising hormone, cortisol, melatonin, prolactin, follicle stimulating hormone, growth hormone and finally thyroid-stimulating hormone. This was then all backed up by Prof Goadsby's PET studies, which as you know showed a marked increase in activation in the ipsilateral ventral hypothalamic gray matter during attacks.
Incidentally, although this increase in activation has been seen amongst sufferers of the other TACs, it has not been seen in migraine"
Wendy
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Renee
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Re: Hormones and Clusters
« Reply #6 on: May 30th, 2004, 3:58pm » |
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Yes, I had an Oopherectomy (removal of ovaries also) as well.
I am not sure where you came up with your info Miapet, but I was not going to allow my ovaries to remain intact when they are at such at high risk for ovarian cancer.
I would advise anyone contemplating this to weight their odds and look very heavily at having the oopherectomy as well.
I would not be needing HRT today had I not had an oopherectomy as well but when I weighed the risks I easily came up with my decision.
thanks pubgirl for your post. I had read that info in the past and was aware of the testosterone situation.
renee
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Bob_Johnson
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Re: Hormones and Clusters
« Reply #7 on: May 30th, 2004, 5:18pm » |
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Re. special needs of women. Both of these in HEADACHE QUARTERLY, Vol X, #2, 1991: "Women and headaches:a comprehensive approach", p. 31-36. "Special considerations in the management of headache in women", p. 37-43. The last one focuses on role of hormones in headache and how medications must be altered.
You can get these articles by taking these citations to your local library.
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Edna
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Re: Hormones and Clusters
« Reply #8 on: May 30th, 2004, 5:29pm » |
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Renee,
I've had a hysterectomy, and been on HRT. Haven't noticed a change with ch since the hyst.
But, wanted to let you know, my sister was on HRT also after her hyst. Recently, due to heart irregularities, the doc suggested to come off of the hormones. (estrogen alone also)
She too at first suffered tremendous hot flashes. Doc suggested an OTC remedy, "New Phase". I believe that's the name of it.
She's been on it for over a month now and it seems to be working quite well.
Might be something worth checking into after you suggest it to your doc. (oh, and don't be too too bitchy when you do.....  )
Hope this helps you somewhat, and if not hope your doc gets you feeling better really soon.
pf wishes,
EDNA
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ave
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Re: Hormones and Clusters
« Reply #9 on: May 30th, 2004, 6:10pm » |
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Renee, sorry I wasn't clear enough.
I have had migraines all my fertile life. During the change I had both migraines and aura's.
Shortly after the change subsided I got clusters instead. I do get aura';s still from time to time, but maybe 1 migraine in the last 5 years...
Now I feel the change is way behind me and the clusters do not usually exceed kip 3 or 4 - which is nothing, really.
But, as I said, this may be caused by my indulging in shrooms. They certainly stopped my attacks dead several times.
Oh, and btw, of course youhave hormones in your body. Youcannot very well live without! What happens at puberty and menopause is that the balance between a number of hormones, of which oestrogens make up the bulk, is disturbed and unstable. Up and down like a jojo, and that is what causes the mood swings.
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pubgirl
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Re: Hormones and Clusters
« Reply #10 on: May 30th, 2004, 7:00pm » |
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Renee et al
It's not the testosterone bit I was referring to. It seems very clear that CH in women (and men too) can be related to the individual body's reaction to female and male hormone fluctuations. This may explain why some women's Ch is not affected by their hormones as it is the individual's response to what could be very small fluctuations indeed which is key. As far as I am aware, even if a woman has had ovaries and womb removed or be post menopausal or on HRT, the hormone fluctuations still exist.
On a personal note, I get severe PMT sometimes and if in cycle, MUCH worse (more painful and more frequent) CH attacks during that time as well, but when my hormone levels are tested, they are not really abnormal, it just seems that I react very strongly to the changes in a cycle. When my period starts, the CH attacks drop back to one manageable one a day again.
I would be interested to know if this is the case with other women here.
Wendy
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miapet
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Re: Hormones and Clusters
« Reply #11 on: May 30th, 2004, 10:09pm » |
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Renee, the reason I said IF possible not to have it is, it's far easier to live life with natural hormones, but it's not okay to do if there are risks involved (hence the if). Not all hysterectomy's are done due to cancer, so there are times it's okay to leave one or both overies intact. The HERS Foundation (Hysterectomy Educational Resources and Services) has been compiling data and educating people for some time on this issue. Unfortunately, there are many women who would have been better off not having the procedure. Of course, there are those who needed to have the full-meal deal . . .just not all of them.
Oh, and for the record, I fit in the category of 'would have been better off without the full-meal-deal'
*positive light and energy*
miapet
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Renee
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Re: Hormones and Clusters
« Reply #12 on: May 31st, 2004, 9:53am » |
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I guess because I only had the patch on for 4 days it isn't taking long for the hot flashes to return this time...ugh!!
Ch is behaving again and hot flashes and insomnia is back!
Thank God it's a holiday...no employees to chew on. 
I believe these hot flashes should be reason enough for me to move closer to where the trout live, where it's cooler!
renee
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The fungus among us is for real!
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Elaine
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Re: Hormones and Clusters
« Reply #13 on: Jun 2nd, 2004, 5:07pm » |
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Renee you might just be on to something here.
I am going through the change of life.
My clusters have changed maytter of fact I been pain free since I got off my harmonds.
Hmmm clusters or hot flashes and saty up all night?
I will take the Hot Flashes and staying up any day over it. 
Don't men go through some kind of change?
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pubgirl
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Re: Hormones and Clusters
« Reply #14 on: Jun 2nd, 2004, 7:11pm » |
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on Jun 2nd, 2004, 5:07pm, Elaine wrote:
Don't men go through some kind of change?
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How would we tell the difference from their normal awful behaviour? At least we behave well most of the time 
Wendy
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