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Lúthien

Clusters stopped after I started taking the pill (estradiol)

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Hi all,

I registered because it might eventually benefit someone else to know what caused my CH to go into indefinite remission - at least, it's been over 25 years now since the last episode *knock on wood*.

I'm a Dutch woman, and I started having these dreadful headaches when I was 22. Of course I went to see the doctor, but he apparently never heard of this, but sent me to the hospital for an x-ray and some other tests to exclude some possible causes for the pain. When nothing showed up, he concluded that it was some kind of stress-related headache.

That was, of course, entirely unhelpful, as were the other visits to the doctor related to finding some relief. 
The first two seasonal clusters did not last very long, but after that they took off seriously, settling on a pattern of two three-month clusters, each separated by three pain-free months every year. Some clusters I had one attack per day (usually after dinner), sometimes there were two (one of which woke me around 5 am, the other around 8 pm). It's strange that I now hardly remember any individual attacks, apart from two that stood out for lasting much longer than usual - the worst of those raged on for maybe six hours, and took me 14 hours of sleep to recover from.
I suppose it was more or less the usual CH pattern.

Because my mother was prescribed DES when she was pregnant of me, I was tested for possible effects of that when I was 31. One of the results of that was that I was rather low on estrogen, so I was prescribed "the pill" (a regular anti conception one), had my blood tested again after that, and eventually it seemed to be OK. This happend just when a new cluster was about to take off, but - I hardly dared to believe it at first - the estrogens also seemed to have an effect on the CH. It was as if the attacks became somehow "half-hearted": they lasted shorter, and were not as bad as they used to; and after a week or two they ceased altogether.

Even now, 25 years later, it still feels as if I'm tempting fate by mentioning it - but they have not returned since; apart from one "shadow" attack when I tried out a different formulation of the hormones (and quickly switched back). Some years ago it was considered better to switch to using a low-dosage estrogen patch instead of the oral medication, gently tapering off - and so far, I'm still pain free. 

I did a search on this forum for the keyword estrogen and found that someone reported that using estrogens had actually triggered CH - and some people reporting that testosterone helped them. It seems that hormones are complex; but it seems obvious that there is in any case some relation to CH, somewhere. 

I actually found out that it was CH that I had in my twenties after it stopped. I certainly hope that by now doctors can better diagnose this because there are more options available to sufferers.

Wishing you all the very best and may you tame the beast!

Lúthien

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Dear Lúthien,

The endocrine system and its endocrine hormones play a significant role in both cluster and migraine headache.  The problem is no two women behave alike during pregnancy or while taking birth control pills.   One of the best ways to get on an even playing field so to speak and get your CH under control, is to start taking vitamin D3 plus its cofactors.   The first step in this process is to see your PCP/GP for lab tests of your serum 25(OH)D3, calcium and PTH (parathyroid hormone).  Odds are high you're vitamin D3 insufficient/deficient.  As Chers, we need our 25(OH)D3 between 70 and 100 ng/mL so be sure to ask for the acutal 25(OH)D3 measurment and not just your doctor's interpretation of the results.  As the normal reference range for this lab test is 30 to100 ng/mL so most physicians will say 31 ng/mL is normal... which is true for rickets, but not CH.'

Even though you've experienced a CH pain free response using a low-dosage estrogen patch, there's no guarantee it will continue.  You can find a download copy of the anti-inflammatory regimen CH and MH preventative treatment protocol at the following VitaminDWiki link: 

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

This regimen has a wonderful efficacy with 80% of CHers responding with a significant reduction in the frequency of their CH from a mean of 21 CH/week down to a mean of 4 CH/week in the first 30 days.  52% of CHers starting this regimen experience a complete and sustained cessation of their CH in the first 30 days after start of regimen through the end of 2018.  Both figures of efficacy jumped by 10% in 2019 after I started suggesting CHers switch to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 in July of 2018.  There have been no reports of hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity since I began posting about the efficacy of this regimen in December of 2010.

Take care and please keep us posted.

V/R, Batch

 

 

Edited by Batch

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Very glad you tamed the beast.  With you history of DES exposure I trust you are getting continues surveillance.  The biggest concern for DES exposed females is clear cell carcinoma of the cervix.  Regular evaluation is still recommended no matter ones age (at least in the US).  A bit off topic but the DES story is one of those "unanticipated outcome"  tales of woe.  

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