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ClusterBusters
Tony Only

Rocking the boat ?

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I'm not participating much on english CH discussions at various sites any more and nowadays sometimes I run into trouble when I do (not here since ya all are so sensible!). I have followed our finnish CH group almost daily for around 4 years and there are some consistent observations made in this group that repeat on different patients year after year. Usually I don't take these observations outside the group (to english CH sites) especially when they are something "new" since my fan does not need any more s**t it's got plenty.

 

This came up yesterday on Facebook so I thought I'd post it here as well. It was about steroids' ability to "create" conditions for CH to come over. Some people can kickstart a cycle completely unexpected with having a steroid course for some other ailment than clusters. It's not even usual but there are too many cases for me to think it's a risk for some. I have no idea would some kind of steroid response, or lack of it, play some role in this. But it's fairly logical IMO, we're dealing with a stress hormone here. That has a chance to rock the boat on some of us.

 

One other thing I just have to mention here is preventative busting. The official recommendation is to prevent based on everyone's individual schedule. But it looks like that for some us doing a preventative busting just for schedule sake in a situation where there has not been even a slightest sign of a weak shadow for a long time might rock the boat as well. And at worse case, kickstart a cycle.

 

Would be very interesting to hear observations of others about these, and other things as well.

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I'm pretty curious about that last part.  How many people have you really seen start a cycle with a preventative bust?  My concern is whether dosing at the end of a cycle that is going away on its own to finish it off for good might generate a reoccurrence of the cycle or slapbacks so harsh that you have to start medicating again.  Any evidence of that happening, and if so, how prevalent?  Thanks. 

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I don't recall one either Jeebs.

 

Some have stated that doing a maintenance dose apparently started a cycle for them. One, as I recall, changed busting substance for maintenance and felt that doing that started the unexpected cycle. I am not sure if he was chronic or episodic. But, he did change up his regular routine.

 

I suspect that most episodics tend to up their maintenance dose or shorten the time between them when it is traditional cycle time. ;) And when they feel safe, stretch out the time in between in their off season.

 

As for Pred out of cycle, I have taken it with no issue a few times in the last 5-6 years.

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Thanks. That's what I'm hoping. If anyone has accidentally busted their way back into cycle, please speak up as I think that would be a really important thing to know.

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I had been pain free for 3 1/2 years doing a maintainence dose of mm every 8 weeks, using anywhere from 2 to 2.5 grams,

not sure why but I decided to up the dose to 3.5 grams, I had a really bad trip, started a cycle about 2 weeks later and for now have lost the effect of mm. Using seeds now, hoping someday it will work again.

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Well that's incredibly lousy - I'm sorry to hear that.  Let me ask you a couple questions.  Prior to your 3 1/2 yrs pain free, were you chronic or episodic?  Did the cycle start at the time you were supposed to go into cycle or high cycle?  Were you feeling like a cycle was ramping up prior to that maintenance dose?  Did anything happen in the off period that might have precipitated a cycle?  How old was the MM that you used right before the cycle?  Was it from the same batch that you had been using for the prior 3 1/2 years (and therefore, was it 3 1/2 years old)?  When you do use MM now, do you feel any effects of it? How long has this cycle been going?  Have you tried any of the other tryptamines to put the cycle down?  The more info you provide, the better job we can do trying to figure out what may have caused it.  Thanks. 

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Going back to the OP and the comment/question about Steroids.

 

I think, and from my own personal experience, there is a very strong connection between clusters and hormone levels. ALTHOUGH, I've always seen it to be connected with people who have a low Testosterone count. Taking steroids would increase your testosterone, and thus have the potential (maybe) to reduce clusters. I would be surprised if it caused them. That said, I'm not a medical doctor and my knowledge on the subject isn't exhaustive.

 

When I transitioned from Male to Female, I took an anti-androgen that stopped my Testosterone (T) production, and at the same time took a very high dose of Oestrogen. It was during this period when my clusters started, and here is the theory behind the connection.

 

Thanks to some scientists in the Netherlands, we know that the hypothalamus in women is smaller than in men. We are also pretty sure that when someone changes their gender, and thus changes their hormones from being T based to Oestrogen based, it reduces the size of hypothalamus so that it matches that of a genetically born woman. So, hormones impact the hypothalamus.

 

We are also pretty certain that clusters stem from the hypothalamus because the hypothalamus controls the body's clock as well as body temperature, etc. etc.  As clusters often occur at the same time of day, same time of week, same month of the year, etc. etc., it is believed they are triggered by the hypothalamus. 

 

My clusters are a direct result of me screwing with my hormone levels, altering my hypothalamus and thus triggering the clusters. My Neuro believes I was pre-disposed to having them anyway, and it was my altering my hormone system that triggered them. Who knows, I may have gotten them at some point in my life anyway, or maybe not. 

 

But I do suspect that if you take something that alters the balance of your hormones, and you are pre-disposed to having clusters, you are very likely to trigger them. 

 

MG

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MG - Agreed that hormone levels has something to do with it, certainly in at least some people.  This is an interesting set of research by Dr. Rozen - http://www.ncbi.nlm.nih.gov/pubmed/?term=clomiphene+and+rozen+and+%22cluster+headache%22 

 

According to Wikipedia, Clomid does the following in men (off label of course):

 

Clomifene citrate has been found very effective in the treatment of secondary male hypogonadism in many cases.[14] This has shown to be a much more attractive option than testosterone replacement therapy (TRT) in many cases because of the reduced cost and convenience of taking a pill as opposed to testosterone injections or gels.[15] Unlike traditional TRT it also does not shrink the testes and as a result can enhance fertility.[citation needed] Traditional TRT has the risk of inducing a chemical gonadectomy, although with monitoring and low-dose hCG as adjunct, this is usually preventable and reversible.[16] Because clomifene citrate has not been FDA approved for use in males it is prescribed off-label. Due to the fact that Clomifene is now a generic medication in most markets, it is unlikely that a drug company would pursue FDA approval for use in men now because of limited profit incentive, mostly due to the relatively small market potential.[17]However, the single isomer of clomifene, enclomiphene under the brand name Androxal, is currently under phase 3 trials for use in men.[18][19]

 

So maybe this is something we should collectively be mentioning to our doctors. 

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I was episodic but cycles were lasting so much longer I feared I was advanceing to chronic.

My cycles starting have never had a pattern.

No I did not feel as though a cycle was getting ready to start, it was just a maintenance dose.

The mm was fresh, 6 months old, kept in freezer.

The cycle was my shortest in 30 years, (6 weeks) busting with seeds and D3 regimen, aborting with O2, and staying off imitrex and all other meds.

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I got testosterone replacement therapy for low T as one part of my preventative regimen. I asked my neuro for it after reading this paper:

http://www.ncbi.nlm.nih.gov/pubmed/16732838and printing it out for my doc. Testosterone, melatonin, all sorts of things affect each other, and you have to have a holistic approach to the balancing the whole system - 

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in my very unscientific results the increase of test seems to bring them on. I am just getting out of( I hope) a ch cycle but I had started taking an anabolic three weeks ago but I was also off of my vitamin d and early spring has brought cycles on before. the last bad ch cycle I had was almost 2 years ago but it was mid summer (which is not a normal ch cycle time for me) and I had started taking an over the counter test booster and dhea and to make it even harder to tell what caused it, the Topamax I was on started coming from a different lab and my pharmacy wouldn't order from the old company. I have been into working out and have played with anabolics many times over the last 20 years and I give no solid answer though, like many others with this there doesn't always seem to be a rhyme or reason. I will say I can start a ch cycle through heavy cardio and or a low carb diet and it is also the only time the headaches have been bad enough to make  me suicidal from the pain. its been a very tight rope to walk as I keep getting fatter and out of shape but pushing myself in the gym and or adding an anabolic(which go hand in hand) can bring on a ch cycle leaving me almost afraid of working out. I have responded well to vitamin d and am hoping it has my ch suppressed and am going to try and keep on the anabolic. if you disagree with my actions I don't need your 2cents but am more than happy to listen to an objective input, I am just trying to share the experiences I've had to maybe help others. 

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