In my never ending search to maybe find out how I became a CH sufferer I have been doing much research.

Most recently I have been studying what causes the CH, and from what I have read, during a cycle my Hypothalamus is deformed and may be the root of the problem.

Now I have been going through my life pondering if there was some specific point that I could trace something happening to cause my Hypothalamus to become deformed.

I never took any medications growing up except acutane. This is an acne medication (was the king of treatments at the time and may still be) that I took daily and had to get blood work done monthly to make sure it wasn't killing me or something. I was just a niave teenager who had acne and probably should have just let it run its course. Now there are commercials on TV saying if I have had my colon removed and took Acutane I might be able to get money or some shit. I dunno.

Anyhow, I thought maybe there is some link there. So I found some information on acutane and it DOES effect your Hypothalamus. Here's what it says:

^{*Accutane contains parabens, which are chemical preservatives known to display estrogenic activity and mimic the body's hormones. These chemical-disruptors may interfere with the body´s endocrine system: the adrenal glands, the pituitary gland, the hypothalamus (in the brain), the thyroid, the ovaries and testes, the pancreas (which secretes insulin and regulates the level of glucose in the blood), the stomach, the kidneys, the skin and virtually every body system.}

I am now wondering if taking the medication 10 years ago it had finally come back to haunt me.

I am curious if there is any way I could get testing done to see if there is a direct link?

Has anyone else tried researching drugs they were prescribed in the past to see if there is a link to what caused the Hypothalamus to become deformed?

Mmhh.......

Beta wrote on Mar 18^th, 2011 at 5:29pm:


The hypothalamus clearly plays an important part in CH, as shown from imagining taken of the brain whilst people have a CH. However it is unlikely to be anything as simple as just a damaged hypothalamus.

Since people tend (not universal) to not start with CHs until their 20's or older, the hypothalamus has been functioning well up to that point, so for CHs to start there must be one (or more) mechanisms by which a CH episode (or chronic behaviour) can be triggered. There is a genetic link and some research has linked head injuries, however there are almost certainly other influences. Even if someone has a hypothalamus that is prone to be able to cause CHs then there is something that switches on the CH behaviour.

Since CHs are pretty rare, with rates around 1 in 1000 people, doing research on what kicks off CH behaviour is non-trivial as you need to be able to do tests on large samples of people before they start with CH. So to get a sample of just 50 people with CH you'd need to look at doing all the investigations on 50,000 people. Doing tests like MRIs isn't cheap, so this means that this kind of research gets very expensive very quickly. Plus with the wide range in the ages that people start CHs, it will take a long time to get reliable, statistically significant results. The combination of high costs plus long duration make this research complex to perform and relatively unlikely to get funded.

One possiblilty could be to piggy back off research projects where other brain issues are being studied, with something like Parkinsons, alzheimers or similar being good links. These projects are also likely to include MRI scans and long term following of patients, meaning that if any of them get CHs then it will be possible to do a comparison of the before and after MRI images.

Hi Beta...welcome aboard....

Wouldn't we all like to know? 30 yr clusterhead here and I've parsed every chemical ingested(intentional or not)...head injury (yup)...and familial trait (migraines) I could imagine. And you know what...I don't know....and it really don't matter. For us....what is, is...I'm not interested in blame, or suing anybody, or regretting what cannot be changed.

My belief...we are born with a deranged (wonky) hypothalamus. If it could be discovered what caused that...beyond accident of birth...that would be great...and perhaps minimize the members of this club that don't wanna be members.

But, for example, I have another "condition" that has much more dire consequences...and has been studied a million times more than ch...WITHOUT any idea of whence it came or whence it goes. CH aint even in the line for such studies......

I concentrate now on living WITH ch...and doing the best I damn can dealing with it....and what I learn here is my BEST weapon. Read...read it all, and contribute (row)....it's a great boat.

Best,

Jon

To be honest about it, I think this is another way of asking "why me?" It seems we have a need, especially in the beginning, to get all ontological about this stuff...where did they come from, why am I the target, is it something I did or am I just defective in some way?  I agree with Bob and others. Let the researchers research, and we'll fight the good fight daily and without let-up. How do I maintain my own humanity in the midst of my personal pain...that's the issue. Or more colloquially, how can I kick this beast out of my head? And for the record, I never took acutane or anything like it. Blessings. lance

rascleo wrote on Apr 10^th, 2011 at 7:17am:

Read Bob's post.

     Potter

I had CH before there was accutane!
Did ya know accutane was originally a chemo drug for brain cancer.