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        New Message Board Archives >> Medications, Treatments, Therapies 2005 >> Something to ponder
        
(Message started by: gobby on Dec 28^th, 2005, 12:35am)

Title: Something to ponder
Post by gobby on Dec 28^th, 2005, 12:35am

I probably should post this in the "specific" part of this board, but I feel that this section seems to get more attention, and I'd kinda' like some feedback on this. Has it ever occoured to anyone that these cycles we go through "may" be of pre-determined length and severity? I get he feeling that no matter what I do, I can't change this, but I might be able to mask the symptoms for a while. Kind of like a cold. You can take as many meds as you want for a cold, and no matter how good you feel the cold is still there and is going to go away when it feels like it. And I hear a lot of talk about, "well, I took something and it worked for a while, but now the headaches are back and worse than before." Maybe what you were doing masked the symptoms to a point and your cycle progressed like most of them do and now the bad CH's are just too powerful for what ever it is you were doing. I'm almost to the point where I believe these things have a viral tie in somewhere, and the headaches are just a horrible side effect. I also get cold sores on my lips that appear out of nowhere, sometimes stay away for years at a time and are the physical manifestation of a virus. Again, all I can do when one hits is apply some medication to hopefully make myself more comefortable and ride them out. It seems to me that the common cold, cold sores, and these damn things have a lot in common. What do you folks think? Could I be on to something or am I just loopy?

Title: Re: Something to ponder
Post by MJ on Dec 28^th, 2005, 12:57am

The viral tie in may be there but differently than you put it.
As we get tired and exhaustion sets in naturally our immune systems would suffer as well. Increasing the opportunity for viral infections.

There is similarity with a cold in the fact that no cure exists yet. For many years I used to have fear of colds starting a cycle untill I realized I got the cycle without a cold too.

Yours are questions that I dont think definate answers exist for yet.

Title: Re: Something to ponder
Post by gobby on Dec 28^th, 2005, 12:58am

I guess what I'm trying to say is that maybe the headaches arn't the "sickness" maybe their only a "symptom" of some other under lying problem. Just like a runny nose is just a symptom of a cold.

Say purely hypotheticaly that a virus has attacked or invaded the hypothalamus which then excreats a chemical or hormone that in turn travels through the blood and inflames the Trigeminal Nerve causing the CH's. Perhaps we should be looking more in other areas than at the end result.

Title: Re: Something to ponder
Post by MJ on Dec 28^th, 2005, 1:20am

Maybe.

I lean more towards the clock/biorythym thing due to the cyclical nature in episodic CH.

One thing is sure that pain is allways a symptom of something.

Title: Re: Something to ponder
Post by BobG on Dec 28^th, 2005, 1:31am

I think you are trying to over-think the problem.

A virus in the hypothalamus? Some of us have weeks-long clusters (episodic) and some have years-long clusters (chronic). Would the virus do it's dirty work for a few weeks in some and for years in others? I don't think so.

You have a broken hypothalamus gland. We all do. We were born that way. The gland controls the flow of serotonin, but doesn’t do a very good job of it. Result, clusters.

Just my 2 cents worth. :-/

Title: Re: Something to ponder
Post by Mr. Happy on Dec 28^th, 2005, 1:43am

Beauty, Bob. What do we have in the gift bag tonight?

Occum's Razor - Given two equally predictive theories, choose the simpler.

I'm fucked, and I know it. Simple enough.
RJ

Title: Re: Something to ponder
Post by Linda_Howell on Dec 28^th, 2005, 1:57am

Quote:

Re: Something to ponder
« Reply #5 on: Today at 4:43am » Quote Modify

--------------------------------------------------------------------------------
Beauty, Bob. What do we have in the gift bag tonight?

Occum's Razor - Given two equally predictive theories, choose the simpler.

I'm fucked, and I know it. Simple enough.
RJ

I believe what Randy is trying to say here(correct me if i'm wrong Mr. Happy) is....NO!

or am I just loopy?

yep might just be.! No pre-determined timing as I can see.
Chronic since 1987

Linda

Title: Re: Something to ponder
Post by burnt-toast on Dec 28^th, 2005, 9:42am

I'm not sure there is a predetermined length to the cycles but I believe strongly in seasonal factors. Fall, Winter, Spring are terrible months for me with mid to late summer usually improving but not stopping CH.

I doubt it's a viral condition but believe CH may have some ability to (for lack of a better word) mutate like virus' do.

I've been fortuante or maybe unfortunate to have opportunity to experiment a with long-term treatment options.

I've had numerous discussions with Neurologists regarding this nightmare's ability to develop resistance to treatments over time. With my current Neurologists approval and input, I've started varying treatments (meds./various off the shelf alternatives) as-soon-as I notice a change in CH activity or severity levels. I keep my core meds. Lithium/Verapamil but throw something new/adjust dosage levels every time symptoms change.

I have a variety of prescriptions and various odd stuff laying around to pull this off - but I am having the best Fall/early Winter in recent memory, not perfect but much better.

Obviously only time will tell and someone's going to have to dink around with this method for a long time to see if it has merit. But I have to say - for the first time in over a decade I feel that I had some control over this nightmare.

Just thought I'd share this with the board.

Tom

Title: Re: Something to ponder
Post by floridian on Dec 28^th, 2005, 10:48am

Virus? Some research has shown that clusterheads have a high level of antibodies to the mono viruses, herpes simplex and epstein barr viruses. The immune activation from the viral infections may be part of it for some of us. Viruses can trigger inflammatory immune hormones (IL-1, IL-6, TNF) which seem to feed the cluster mechanism.

Masking the symptoms and having them come back stronger? Yes, I think the triptans do that for some people. They help short term, but long term, they change serotonin receptors in exactly the opposite direction.

Predetermined length and intensity? NO! Things get glitched up, but I think that the glitches can be reduced. Colds and flu are not necessarily of a predetermined length and intensity either - while some 24 hour bugs aren't worth doing anything more than riding out, flu and cold can be affected by various treatments (tamiflu, rimantidine, zinc, vitamin C, etc etc).

"the headaches arn't the "sickness" maybe their only a "symptom" of some other under lying problem. I agree, although it may be hard to accept when the pain is so intense. But I have had cycles without pain, but all the other symptoms, and felt like total crap. The beast was there, things were screwed up, just didn't have the excruiciating pain for that cycle.

Title: Re: Something to ponder
Post by cmoore on Dec 28^th, 2005, 5:28pm

on 12/28/05 at 01:43:47, Mr. Happy wrote:

Occum's Razor - Given two equally predictive theories, choose the simpler.
RJ

.....

1] doctors from all over the world do massive amounts of reasearch, create synthetic medicines, combine them in a multitude of varying amounts and combinations in thousands of different clusterheadache patients. Every single person is affected differently from the different combinations creating a huge "system" of uncertainty and disorder.

2] eat mushrooms that grow naturally, 5 days later eat some more, and feel great!

I definately agree, that all things being equal, often the most simple solution/explination is correct.

Title: Re: Something to ponder
Post by llreed on Dec 28^th, 2005, 9:37pm

Hi Newbie Here - I will take a leap with a theory. From what I see on this website everyone seems sincerely, eager to help and educated - maybe just maybe - If we all turned into as@h*les who were rude, selfish and ignorant we could alter our biological clock.
Just a thought.
llreed

Title: Re: Something to ponder
Post by Jonny on Dec 28^th, 2005, 9:55pm

on 12/28/05 at 21:37:22, llreed wrote:

Ive been trying that for more than six years here.....wont work ;;D

Title: Re: Something to ponder
Post by gobby on Dec 28^th, 2005, 10:15pm

Well, as I said before,it was just something to ponder. Some of the greatest discoveries come from the most unlikely places. And while my ideas were "probably" wrong, you never know where the next minute bit of insight may come from that might get to someone somewhere and make them say"damn! why didn't I think of that!" So I encourage anyone with any ideas to voice them, 'cause........you never know.

Thanks for all the feedback folks, (even though some of it was quite HARSH) and I wish everyone here a wonderful pain-free future! :)

Title: Re: Something to ponder
Post by chewy on Dec 28^th, 2005, 10:56pm

Quote:

You have a broken hypothalamus gland. We all do. We were born that way. The gland controls the flow of serotonin, but doesn’t do a very good job of it. Result, clusters.

Just my 2 cents worth.

Add that 2 cents to the change jar of some of the top CH researchers in the world and you get the sum total of:

Quote:

You have a broken hypothalamus gland.

Plain and simple.

Title: Re: Something to ponder
Post by brewcrew on Dec 28^th, 2005, 11:03pm

on 12/28/05 at 00:35:07, gobby wrote:

I know one thing for certain - reading huge masses of text gives me a headache. Literally. I won't read your post because I can't.

Paragraphs are our friends.

Title: Re: Something to ponder
Post by chewy on Dec 28^th, 2005, 11:15pm

Not to mention someone reposting the whole freakin thing.

Title: Re: Something to ponder
Post by BobG on Dec 29^th, 2005, 12:00pm

on 12/28/05 at 22:15:10, gobby wrote:

Well, as I said before,it was just something to ponder. Some of the greatest discoveries come from the most unlikely places.
Thanks for all the feedback folks, (even though some of it was quite HARSH) and I wish everyone here a wonderful pain-free future! :)

Gobby, you are absolutely right. The purpose of this site is to encourage new thinking to solve the puzzle of clusters. Thank you for posting your theory. If someone hadn’t had the theory of mushrooms or kudzu or many others we would never have had those treatments. Yes, some of the feedback, rightly or wrongly, can be harsh. But, that is just the nature of a message board, any message board.
Please don’t take it personally. We’re all in this together.