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        Cluster Headache Help and Support >> Cluster Headache Specific >> My New Approach
        
(Message started by: dreamrider on Jan 14^th, 2007, 7:45pm)

Title: My New Approach
Post by dreamrider on Jan 14^th, 2007, 7:45pm

Hi All:

I am an old newcomer. Been off the board for a few years. Still episodic. In fact, just finished another episode 1 month ago. Last time I was here the shroom/LSD therapy was the new buzz word, year 2000? or 1999?

Since then, the shroom approach was the quickest, and most effective treatment. The problem is securing substance. I can order spores and grow them. Too much trouble, $$ and they don't keep well after harvest. I bought shrooms whenever I could. They loose potency.
So, back to regular OTC meds when I ran out. Of course, I don't have health insurance, self employed here. No Rx prescriptions. Imitrex worked the first time, and totally charmless from then on.

Being a former scientist, coupled with the general lack of knowledge regarding CH, I began doing my own literature research many years ago. Some things became clear for my case, i.e.: a strong correlation between :

1) Depression and CH. Similar serotonergic pathways. Solution: do mood uplifting things. I became an optimist.

2) Stress (proly resulting in mild depression). Depletion of essential nutrients and minerals, + localized free-radical-derived vascular damage. Solution: Mg (1000 mg/day), Vitamins B2-B6 (50 mg pill 2x/day), C (1000 mg/day), E (100 IU/day), Goldseal (2 capsules 2x/day).

I have noticed, via the same gathering of data through years, that my CH episodes, seem to correlate with the physiological insults from agents that thrive during specific temporal conditions, as in Spring, Summer and Autum, all humidity-dependant:

1) Mold Spores
2) Rag Weed
3) Tree Pollen
4) Ozone

These, at least in my case, might be the causatory agents leading to localized blood vessel irritation/damage, contributing to the CH episodes. Another tip. since I made such correlation I have implemented hepa air cleaners in my house. Also, Immediately upon the onset of an episode, I perform thorough cleaning of the house, all clothing and bedding, even if it is clean (as in the drawer, or in the closet) to remove mold, mold spores and other allergans. Mold is a significant problem in the SE US with very high humidity levels during Spring Summer and Autumn.

Dietary Constraints: Implement an effective dietary regime to help lessen the attacks, their intentsity and frequency. CH is similart to HA from taking MAOI and ingestion of foods containing high-er levels of tyramine. In my case, a strong correlation of HA 2 hrs post consumption of (high tyramine content items):

-Alcoholic Bevrages (wine and beer, specially draft beer have very high tyramine content)
-Cheese, and milk products (butter, aged cheeses in particular have very high tyramine content)
-Oranges
-Soy sauce, and soy products
-tomatoes
-potatoes
-cured meats (ham, pastrami, bologna, pepperoni, cured sausages)
-pickled items (okra, olives, jalapenos)
-chocolate (coccoa)
-cocconuts, cocconut oil)
-grains (whole wheat breads, whole grain breads)
-avocado
-fruit juices
-nuts

It seems that as a rule effects will be felt starting around 2 hrs after ingestion. Further, I avoid consumption of large meals. I have better results ingesting smaller meals more frequently. Digestion requires peristalsis, the movement of food through the gut. Peristalsis require serotonin. Larger meals of hard to diggest foodstuffs will take quite a bit of energy, and a sustained serotonin release for digestion. Eat light. Eat often. Don't eat tyramine (a precusor of serotonin).

The TN Connection. TN = Trigeminal Neuralgia. A condition resulting from localized irritation of the trigeminal nerve by the extreme, and sustained local vasodilation of the artery that runs along the nerve. There are a number of solutions to this, including surgical intervention. However, the side effects are rather undesirable, as well as the approach not being practical for the repeated ocurrence of CH. An effective approach is to strengthen the vascualture. Feverfew 1 capsule/day.

My last episode lasted 2 weeks (instead of 6-12 weeks, with 2-8 attacks/day). 1/2 A week was required to come to terms with - I am fucked... again... And 1.5 weeks was required for the implemeneted all of the above and start decreasing the frequency and severity of my attacks. I was able to achieve a full night of sleep without attacks by the end of the second week. I took no OTC or prescription Rx at all during the entire episode.

No solution, at least at the normal physiological level, without Rx, will have an inmediate effect. However, the body, without the aid of medication, can't do that most times. Therefore, how about giving one's bod a chance to heal itself? Hell, even a skin scratch takes 1 week to heal, longer as one gets older. So, it made sense. My resolution was to stick with one method of self-prescribed treatment for at least two weeks to see if any improvement took place. My goal is not to take any med, OTC, or Rx.

CH is like an allergy to life, where one becomes subrealistically hypersensitive to everything that surrounds us, from light-to-fishfarts, while the tears are from real pain.

Title: Re: My New Approach
Post by kcopelin on Jan 14^th, 2007, 10:30pm

Well, hmmm, I'm very glad these measures have helped you. I fight mold and dust and pet dander constantly. Don't know if its related to the CH but I do have allergies and keeping dust and such down does help.
Problem as I see it though, is that not all of us are any one thing. And if the hypothalumus of clusterheads has more grey matter than average, then that pretty much supplants alot of environmental factors. However, depression and CH do seem to inevitable go hand in hand because of serotonin levels.
At any rate, glad your regimen is working.
PFDAN y'all,
kathy

Title: Re: My New Approach
Post by dreamrider on Jan 15^th, 2007, 1:17am

Well, looking at the hypothalamus function took quite a bit of my time. Somewhat something didn't mesh. I mean, there is hypothalamic involvement, which the obvious target. But, where does all the brain's serotonin supply originates? The Nuclei of Raphe, just a tad further downstream from the hypothalamus. Simply I began following the serotonin pathway, given the effectiness of LSD and psylocybin (sp?), at least in my case, in stopping episodes through their partial agonist character with 5ht receptors.

Title: Re: My New Approach
Post by AussieBrian on Jan 15^th, 2007, 3:30am

on 01/15/07 at 01:17:51, dreamrider wrote:

...given the effectiness of LSD and psylocybin (sp?), at least in my case...

Always good to have scientists aboard and all research must be good research until proven otherwise but tell me, are you under the care of a medical specialist?

I ask only in the interests of your own health and hope you're not taking matters too much into your hands.

Title: Re: My New Approach
Post by dreamrider on Jan 15^th, 2007, 12:04pm

Nope, no specialist for me. I was diagnosed, actually, on two different occassions. I have consulted innumerable physicians during visits to the doc's office, as in - since I am here, lemme see what he knows about CH. I sought specialized medical help once after that a few years back, never to do it again. It was quite clear that these guys are as much in the dark about the syndrome, as regular docs, which are also in the dark, at least in my experience. It came across rather clearly that most docs think that CH is, although tangibly painful, a psychological disease. The bottom line with the medical/research structure system is simple, money. There is not enough of a financial gain with such a small crossection of the population being affected. Now, if you say - migraine - instead, everyone and their dog want to treat you, and take your money. And that, my friend, is the crust of the problem. Yes there are significant parallelisms with migraine. Yet, not quite the same thing. The medical structure's approach - close enough for government work - doesn't cut it, at least to gain my money in the quest for a solution.

As far research background, I worked about 15 years in cardiovascular research, starting with USF, Tampa, and ending with Burroughs Welcome, now known as Glaxo-Smith Kline. No, I did not work with Glaxo, or Imitrex, since such work preceeded their takeover of BW. Also, I am not a physician. I just apply my learned research skills toward studying, addressing solutions to my problem, as well as sharing what I have found in so far. I have had CH for 26 years now, episodic all along.

Title: Re: My New Approach
Post by brewcrew on Jan 15^th, 2007, 12:11pm

Just an observation: you are the first scientist (former or current) I have ever encountered that uses the word "proly" in written form. Most scientists know that this is supposed to be written "probably."

Just an observation.

Title: Re: My New Approach
Post by dreamrider on Jan 15^th, 2007, 2:14pm

LOL!!! wonderin'howmanyscientistdouprolynou,xactly? [smiley=laugh.gif]

So, u play the guitar? bass?

Title: Re: My New Approach
Post by brewcrew on Jan 15^th, 2007, 2:36pm

on 01/15/07 at 14:14:36, dreamrider wrote:

LOL!!! wonderin'howmanyscientistdouprolynou,xactly? [smiley=laugh.gif]

So, u play the guitar? bass?

Actually, I know a few. Maybe it's just the crowd I hang with.

Yes, bass. Not sure where you're going with this question, but I'm not giving up the bass in order to avoid CH. Priorities, man, priorities. ;;D

Title: Re: My New Approach
Post by dreamrider on Jan 15^th, 2007, 4:46pm

on 01/15/07 at 14:36:43, brewcrew wrote:

Man, u a sick pup... hanging out with scientists? what is wrong with you!?!?!

Bass - Yes, u have 2 give it up... That is your attax trigger right there... all the low freq shaking yer brain back-and-forth. If you played guitar, or drums it would be an entirely diff story. Now, if you played keyboards... Well, you would need to be shot, since u proly the cause of HA's for the whole band. [smiley=laugh.gif]

So, what band do you play with? rock, country, blues, alternative? got mp3's wanna share? I am into music. I play guitar, drums and bass. I suck at all of them big time. I just picked up the bass a couple of months ago. Damn 'em fat strings! Hey, but they are fun. I love to hear other's originals.

Title: Re: My New Approach
Post by brewcrew on Jan 15^th, 2007, 5:07pm

Nope, no mp3's to share. Sorry. I just kinda play what I feel when I feel like it. When I have the time. When I'm not hanging out with my literate scientist buddies, that is. ;;D

Title: Re: My New Approach
Post by JeffB on Jan 15^th, 2007, 5:11pm

;;D
Man, u sick pup, proly been playin along time. LMMFAO

Title: Re: My New Approach
Post by pubgirl on Jan 15^th, 2007, 6:38pm

on 01/15/07 at 12:04:40, dreamrider wrote:

It came across rather clearly that most docs think that CH is, although tangibly painful, a psychological disease.

Really?

Not my experience. All the ones I know of believe it has a genetic but physical origin, they just are often bloody clueless where and what to do about it.

The anti-manic drugs are the least commonly prescribed prevents here, and if doctors believed CH was a psychological disease, surely anti-depressants and anti-manics would be far more commonly prescribed than they are? [smiley=huh.gif]

In the distant past I think many headache conditions, particularly in women were seen as "hysterical" conditions, but I rarely come across that attitude with CH or migraine nowadays.

W

Title: Re: My New Approach
Post by dreamrider on Jan 16^th, 2007, 11:25am

on 01/15/07 at 18:38:16, pubgirl wrote:

The anti-manic drugs are the least commonly prescribed prevents here, and if doctors believed CH was a psychological disease, surely anti-depressants and anti-manics would be far more commonly prescribed than they are? [smiley=huh.gif].
W

Well, actually, I somewhat recall caming across some paper as of late suggesting prescription of Welbutrin, and other anti-depressants in CH managment. I didn't keep the reference, since it adhered to my observations regarding the medical community's approach to CH, at least in my experience in the US.

Title: Re: My New Approach
Post by floridian on Jan 16^th, 2007, 12:11pm

The SSRIs don't seem to help much - a few people here have linked them to improvement, but studies aren't that encouraging. The tricyclics seem to be of more value for neurovascular headaches, although not generally a first line med, can be very useful for people who have other things to treat (depression, etc).

The fact that lithium helps may or may not be related to its use as an 'anti-manic' agent - it may be that it works by changing PKC ... nobody knows how corticosteroids, valproate, and other CH meds work, but they do turn down PKC.

Title: Re: My New Approach
Post by pubgirl on Jan 16^th, 2007, 2:53pm

on 01/16/07 at 11:25:33, dreamrider wrote:

Yes dreamrider, I already said that! Anti-depressants and anti-manics ARE prescribed occasionally for CH prevention, but pretty rarely, and without consistent success.
As Flo says, Lithium is probably the most commonly used, but then it is often in combo with Verapamil.

There was some brief hope a few years ago that carbamazepine showed promise as a prevent for CH (it is used for TN) but that all seems to have gone very quiet.

Hence why think you are very wrong when you claim that "most docs think CH is a psychological disease"

I think it is thankfully now a REALLY rare doctor who thinks like this or treats his patient as mentally rather than physically ill.

W