Chronic old timers

[tingeling]

Hi

I live well with this. I bust around once a month. Now it`s high cycle, without the seeds i have to bust two. Maybe some noise in between, but that`s not important. i do not suffer and i live well. Been chronic for seven years now. I know it`s not a long time. Sometimes i just wonder about the chronic thing. So chronic old timers, what`s your experiences after starting this treatment?

How many years chronic?

Did it leave anyone completely, or left for years?

I get this thought once in awhile, that maybe it will leave completely one day. It would have been nice. and certainly a surprise.

PFW from me

[tingeling]

OMG... How did i learn how to open doors and windows. loool ;D I just meltet my o2 things.... OOOps.... Damn!!

[Hipshot]

I'm old and chronic, so I suppose your talking to me Ting.

I started chronic 7 years ago. Never had a headache in my life till they hit me like a ton of bricks

I Tired EVERYTHING.

Mushrooms are the only treatment that has helped. And helped in a remarkably big way.

I am mostly pain free now. I am less than a year in and now bust about every other month. Noise in between yes, but it is child's play compared to the old days. I swear I was ready to end it. NO doubt about it. I was done.

The fine folks...the extraordinary people on this board saved me.

I have a pretty normal life now. No jinxing.

Best wishes to all.

Dan

[tingeling]

I was thinking of people that have been chronics for decades. So i guess i wonder if i`m gonna stay chronic for the rest of my life.

So you`re telling me your old?

[Hipshot]

53 years young, Ting.

I had the first pain free thanksgiving in many years yesterday!

[tingeling]

I like those words!!

Happy Thanksgiving Happy for you

When youre painfree, doesn`t everything feel easy? I feel it that way, almost unreal.

[Hipshot]

Yep, me too.

Not often that an hour goes by that I don't think about not hurting. (triple negative)

I really try to enjoy every minute of every day.

Dan

[tingeling]

I think it was all worth it, life can`t feel this good if you haven`t seen the other side

[Hipshot]

That about sums it up Tingling. I think I love you

Dan

[alleyoop]

I'm older and chronic too Ting, so I suppose that I qualify.

I'm 61 years young and have been chronic from day one about ten years ago, although I do remember a brief episode of a few weeks when I was twelve.  I know it had to be CH because I remember banging my head on the floor, trying to escape the pain.

I was diagnosed primary refractory chronic CH.  Other than verapamil, none of the traditional meds helped.  When my neuro started talking brain surgery, I became pro-active and discovered Clusterbusters.  I had more success with the alternatives than anything that I had tried so far.  But I don't feel like I ever gave them a fair chance since I have never been successful detoxing from the verap, after many tries.

Interestingly, I got a six month break after spending 4 weeks in MX with Xeno almost 5 years ago -- still don't know what made that work.

In April, 2008 my neuro showed me an article written by Dr. Todd Rozen about using clomiphene citrate on a patient with CCH.  My doc wrote me a script for clomiphene on the spot.  It took me about 4 months to finally make up my mind to give it a go.  That was August, 2008 and I haven't looked back.  This drug literally gave me my life back!  I went from about 3 to 6 high kips a day, to 1 or 2 very low kips a week, with all of them coming in the evenings around 7:00 to 11:00.  Before clomiphene, the hits were all over the place, including the dreaded wake-up hits.

I tried to attach Dr. Rozen's article to this post, but for some reason it won't let me.  You can find it under "Clusterbusters Files."  It is the third attachment in the third post in the thread, "stories and articles."  It is a .pdf file.

Although I haven't busted in over two years, I still think that it's the best treatment out there, and thus continue to support CBs.

bobb

[tingeling]

Thank you

I`m gonna find that article. I wake up every morning around 5. It doesn`t hurt me, it`s just annoying. when in high cycle, it can be a little worse. Then i also wake up every sec hour during night. But it`s not pain like it used to be. So it`s ok.

I broke all the symptoms off for some weeks as well, with the seeds. I gonna try grow my own RC plants, as i can`t get them that easily. Was thinking that with age it may not be that healthy taking those RC seeds once a month or at least regularly. As it constricts the way it does.

Then i know it can improve even more in the future. And maybe it can be a good thing to move to a place nearer equator as an old lady.

So people can stay CCH for the rest of their life then?

[alleyoop]

So people can stay CCH for the rest of their life then? 

There is supposed to be a tendency to outgrow them at some age.... but, I haven't found that age yet.  :-/

[Hipshot]

Hi Bob and Ting

Bob, I can't help but wonder something. After thinking God for you that you have found the answer for you; why doesn't anyone else, like me for instance, or everyone else for that matter, try the same thing.

Damn. It's legal, no trip....

I had my

testosterone levels checked back when and things were in the  normal range. Do you think I can get a prescription for clomiphene if I try to??

I have tried way more radical strategies, why the hell not.

Do you still take Verapamil?

It is pretty cool that you went to Xeno's place in Mexico. Even cooler that you got pain free for a time after. Hmmm

You and I are very similar in our HA story.

By the way: I think you are one cool guy to stay on board and support the rest of us (you having been without headaches for a couple of years now). Way cool of you.

Dan

[alleyoop]

Bob, I can't help but wonder something. After thinking God for you that you have found the answer for you; why doesn't anyone else, like me for instance, or everyone else for that matter, try the same thing.

Damn. It's legal, no trip....

I had my

testosterone levels checked back when and things were in thenormal range. Do you think I can get a prescription for clomiphene if I try to?? 

Hi Dan!  A few have tried clomiphene, with various degrees of success.  Xeno took it for a year or so I think, with fairly good success.  Mad6String also tried it very briefly.  Both quit with the same complaint - erectile dysfunction.  I too, have experienced this side effect, but at my age cannot directly attribute ED to the clomiphene.  At any rate, I don't care any more - too much trouble!   I hung mine on a nail, so to speak. ;D  The bottom line for me is quality of life.  I can deal with a loss of sex drive much better than the hard hits.  No contest!  But why raising T-levels would cause ED, is beyond me; you would think that it would do the opposite.

Most recently, Steve (plateglass) on ch.com has tried the clomiphene with great success.  Read about it here:

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1228226896/286#286

My T-levels have always been in the normal range - both before and after clomiphene.  Go figure. :  All I know is that it works for me.  I don't see any problem with getting a neuro to write you a script.  I would just print out Dr. Rozen's article, and take it to him.

Do you still take Verapamil?

Yep, still 480mg daily.  I need to try another taper...it's been a few years...maybe after the holidays.

It is pretty cool that you went to Xeno's place in Mexico. Even cooler that you got pain free for a time after. Hmmm 

Yea, Xeno is a cool guy! 8-)  We have all sorts of theories about what may have happened.  He even did a presentation on the subject four years ago in Austin.  He used Buffet's "Changes in Lattitude, Changes in Attitude" as a backdrop for the .pps presentation. 8-)

By the way: I think you are one cool guy to stay on board and support the rest of us (you having been without headaches for a couple of years now). Way cool of you.

Thanks Dan.  My reasons are still self-serving in a way.  I have two brothers diagnosed ECH, and am convinced there is a genetic component to CH.  It seems to skip generations in my family.  So far, neither of my two daughters have shown any signs.   But the last thing I want is to see my future grandchildren have to deal with this disease.

Also, I want to correct you.  Although the difference between pre-clomiphene and post-clomiphene is like night and day, I am not completely PF.  I still get a mild leak-through hit here and there which I attribute mostly to overindulging in the cocktails. 

Best,

Bob

[Hipshot]

I attribute mostly to overindulging in the cocktails.Shocked

Hi Bob.

Thanks for the clarification on you not being completely PF. I understand about the ED stuff. Verapimil did that to me in a BIG (small)way. Maybe it's that rather than the clomiphene??

I appreciate you're being level with me about the side effects. I would have my thingy removed to permanently get rid of this affliction that we suffer. But I do like the fact that "it" works again.

Good food for thought.

So what is Xeno's deal. You mentioned Austin. I know he is in Mexico. Is he Mexican or what? Seems like he's a good guy...just like all of us Clusterheads.

I'm a Parrot Head from way back. Love the tune.

Dan

[alleyoop]

Verapimil did that to me in a BIG (small)way. Maybe it's that rather than the clomiphene??

Very well could be.

[alleyoop]

I appreciate you're being level with me about the side effects. I would have my thingy removed to permanently get rid of this affliction that we suffer. But I do like the fact that "it" works again.

For what it's worth, the ED reportedly goes away when you stop the clomiphene.

[TakinitEZ]

Isn't clomiphene a female fertility drug? Would explain the ED issue, and maybe growing moobs (man boobs).

"Clomiphene is used to induce ovulation (egg production) in women who do not produce ova (eggs) but wish to become pregnant (infertility). Clomiphene is in a class of medications called ovulatory stimulants. It works similarly to estrogen, a female hormone that causes eggs to develop in the ovaries and be released."

-T

[alleyoop]

Isn't clomiphene a female fertility drug? Would explain the ED issue, and maybe growing moobs (man boobs).

Yes, exactly.  But it also raises testosterone levels.  And no, no man boobs after over two years of taking 50mg daily.

[TakinitEZ]

OK, read a little more... this is a complex drug, it actually inhibits the uptake of estrogen, thereby increasing testosterone.

"Clomid is the anti-estrogen of choice for improving recovery of natural testosterone production after a cycle, improving testosterone production of endurance athletes, and is also effective in reducing risk of gynecomastia during a cycle employing aromatizable steroids.

While it has been claimed that Clomid "stimulates" production of LH and therefore of testosterone, in fact ClomidÂ’s activity is achieved not by stimulation of the hypothalamus and pituitary, but by blocking their inhibition by estrogen.

Read more from this MESO-Rx article at: http://www.mesomorphosis.com/steroid-profiles/clomid.htm#ixzz16WhOaPZX

[alleyoop]

From Drugs.com:

"Clomiphene citrate is capable of interacting with estrogen-receptor-containing tissues, including the hypothalamus, pituitary, ovary, endometrium, vagina, and cervix. It may compete with estrogen for estrogen-receptor-binding sites and may delay replenishment of intracellular estrogen receptors."

"Available data suggest that both the estrogenic and antiestrogenic properties of clomiphene may participate in the initiation of ovulation. The two clomiphene isomers have been found to have mixed estrogenic and antiestrogenic effects, which may vary from one species to another."

http://www.drugs.com/pro/clomid.html

[Hipshot]

Good to talk to you on the phone about this, Bob.

I am not down with moobs (good one Chris) or ED but CCH sucks ass worse that any side effect I can imagine. As long as I don't grow a vagina on my forehead from Clomiphene I will strongly consider spending $100 to give it a try.

[alleyoop]

Good to talk to you on the phone about this, Bob.

The pleasure was all mine Dan.

[TakinitEZ]

Ya, let's just keep the forehead the way it is now...

I actually just found out my testosterone is low, so going to see an endocrinilogist as soon as I can get an appointment. Will update him on this info. Could be the ticket.

-T

[Bejeeber]

Ya, let's just keep the forehead the way it is now... 

;D ;D