I am a 35 yr old male who has been suffering from varying CH symptoms since my mid-teens.  I did not get diagnosed until about 3 or 4 years ago, when I went to a neurologist and was introduced to the wonders of Imitrex shots.  I seem to be a fairly average CH, in that I tend to get about 2-3 bouts per year and they have lasted from as short as 3 weeks to as long as 8 weeks.  Over the years, the months of the year I have been hit have moved.

I'm currently in week 5 and getting hit at night (waking from deep sleep, massive pain, etc).  I'm taking 180mg of Verapamil every 24 hours and 6mg Imitrex shots at the onset of the pain, which almost always helps within 5-10 minutes.  I've been battling my insurance company and incompetent pharmacists to fight to make sure I get enough Imitrex to actually treat my incidences.  The insurance company rejects my prescription every time, causing a delay in when I can get Imitrex.  During these times I rely on the samples my neurologist has.  I'm blessed to have insurance at all, but why the hell can't they stop being such penny-pinching jerks and give me the medication my doctor knows I need?

I have a couple of symptoms that tend to happen whenever I get a cluster that are so consistent and I haven't really heard some of them mentioned here.  I'm wondering if others have them too.   I definitely get congested on one side of my nose/sinuses during the actual attack.  Once the pain hits, I almost always have to move my bowels (not glamorous to admit, but hey... nothing about CH seems to be) and I know the attack is over when the pain has subsided, nose is clear and I urinate.  I tend to spend many of my attacks writhing in pain on the toilet, or at least spend a good part of them on it.  I have a hard time sitting still on the toilet, but since I have to go, I have to be there.

In some of my recent clusters (over the past two years or so), I've been also getting chronic neck pain (it doesn't go away after an attack and intensifies just before an attack).  I keep thinking the neck pain is a trigger for the attack, but I'm really unsure.  I've been going to a chiropractor to deal with the neck pain, which I've found to be reducing the number of attacks per day (I think... not sure if it is that or the Verapamil actually working).  

I'm curious to keep reading here and learn about other treatments/suggestions.  I tend to prefer natural or homeopathic treatments for health issues, but I've not found anything that produces results for my CH.  Any pointers to successful alternative treatments like accupuncture, massage, etc. would be great, but I don't have high hopes.

Bottom line... I am so thrilled to have found this community of people.  I, like many others, have not met another person who has CH and no one around me really understands what I go through.  This has been negatively affecting my business, my relationships with my family (wife + 2 young kids) and it is an incredible relief to just know that there are others out there who do understand.  

I hope I can jump in here and help out.  Beyond the emotional/tactical support, I have a lot of experience hosting/managing websites, programming and databases.  If I can help on the tech front here, please don't hesitate to ask.

I look forward to getting to know you all!

-josh

Thrilled that you're here, Josh.  Welcome home.   :)

The "neck thing" is actually pretty common.  Not everyone gets them, however.  I used to be convinced that the "neck thing" triggered the headaches, but I now believe the reverse is true.  

It's caused by inflamed nerve ganglia and surrounding tissue.  They usually manifest at the base of the skull, or at C5, on the headache side.  

Look for what we call a "cluster lump" at the tender location.  I get them at C7/T1 where the neck meets the shoulder.  Some get them on the roof of the mouth, and at least one person here gets them on the cheek, near the zygomatic arch.

Have never tried chiropractic to treat "cluster lumps", but the consensus overall seems to be that it's of limited help.  I can tell you that deep tissue massage at the location is bad for me--it doesn't help, and actively makes things worse.

What's been most helpful is ice, or a bag of frozen vegetables applied directly to the "lump".  Be sure to remove the ice gradually, finishing off with a wet cloth when the pain subsides--otherwise, you can experience a rebound.

Again, welcome, and I hope to get to know you better.

All the best,

Geoge

I'am a Troll but I think you hit the nail on the head with this:


Quote:

In some of my recent clusters (over the past two years or so), I've been also getting chronic neck pain (it doesn't go away after an attack and intensifies just before an attack).  I keep thinking the neck pain is a trigger for the attack, but I'm really unsure.  I've been going to a chiropractor to deal with the neck pain, which I've found to be reducing the number of attacks per day (I think... not sure if it is that or the Verapamil actually working).

P.S.  You are experiencing a problem with the prevent.  It may keep you in cycle or mess with you in cycle with the trade off of neck pain.

Welcome Josh-

Thanks for joining us-  I can relate to many of the things you posted.  Neck pain- absolutely before a hit  and then sore for hours after the hit.  I get the night hits too- wakes me up from sleep
( usually about an hour and a half after I fall asleep).  Oh and the toll it can take on the family- you bet.  I have couple of little ones myself ( 7 and 5)    :-/

And I so can relate to the imitrex, insurance problem-  never can get enough -  Right now I am out of cycle, so I have been stockpiling like mad-  I probably have enough triptans to last me my entire next cycle - lets hope anyway-   ;)  Its a real pain isn't it?

Melantonin- over the counter- has saved quite a few folks from getting night hits  . Some people take anywhere between 6-12 mg about an hour before bed and it can help you skip the normal wakeup from the beast.  A blessing when you are so sleep deprived.  

Other alternatives-  look up Kudzu, some swear by it,  also check out the clusterbusters website   May not be your bag but its worth having all the information around whats worked for others.  

Black coffee and chugging a red bull have saved me many a time too from getting a full on HA.  I have recently read here though some contraindications in drinking red bull and taking verapamil together.  I did it all last cycle  but certainly will check that out with my doctor before I do it again.  

Many others will be along to point to areas to check out and read.  

Glad you are here-  Sorry you are hurting!

Kelly

edited because our troll is looking to align with anyone over his latest cause and misinterpreted what I said about verapamil and red bull- >:(

Josh, just a heads-up.

I see the resident troll has posted in this thread, but all I can see of his maunderings is the following:


wrote on Sep 8^th, 2008 at 12:52am:

This is a blocked message from a member you have chosen to Ignore. To view this message, you will have to Un-Ignore the member.

Clicking "ignore" beneath his name will remove all his postings from view.  He seems to be targeting newcomers.  Do as you will, of course, but it's much nicer not to hear what he's blatting about.

Best,

George

And to those who would not mind limiting themselves...then read on.  Otherwise, every person who is a longstanding member here has all the answers!

P.S.  Also, don't let him kid you.  He has other accounts that he knows damn well what I am saying.  Pretty sad that he is offended that I even posted my previous comments.

I suffer from CH's and have for over 18 years.  I also went ballistic on a subject here that earned my green name and Troll status.  I admit I went overboard but I will also for-warn that there is a click here that is in the numbers between 10-20 some peeps that no matter what bs they spout the other 19 or so will back it up no matter what.

Hi Josh,
Sorry you had to come looking for us.  
I don't know of any accupuncture or massage that helps CH.  Some say learning breathing techniques helps a little.  

There are many different meds to help prevent the attacks and help abort one once it has started.  Your doc has you on a popular one, but the daily dose seems small for verapimil.  Most people say you need to go quite a bit higher to get a good effect from it.  Obviously, it has it's risks as well.  Its good to chat with your doc about it.

I use Oxygen to abort 99.9% of my CHs.  High flow O2, at a minimum of 15 litres per minute is very successful for me.  I actually have a 30lpm set up and it works great.

I also use melatonin and benadryl at night to help prevent the hits.  I think it is about 50% effective, which is a nice score.  The benadryl helps keep the nose less stuffy and helps keep the watery eye at a minimum, so that just makes the excruciating pain all that much more comfy   ;)

PF wishes to you.
B$

PS, Dont mind the troll.  He wants you to know that pharmaceutical drugs can be dangerous, even if taken as prescribed.  You look pretty smart, though.  I bet you already knew that.  8-)

Yup Josh,

Up the Verap dose possibly?  That is very keen knowledge that which you will hear alot of.  When that doesn't work then you can do Topomax or try Lithuim or a sling of other drugs that may work for you or not but ....nontheless, try em all bro.

P.S.  From your original post I would be very wary of going the failed prescribed prevent route.  That is strictly my opinion and there are plenty who have gone that route and continue to do so.  There are also alot who are new and old who want to avoid the prescribed prevents at this point and would have never at your point went that route (if they knew then the problems with it).  Prevents do not have to be prescribed!

 To all those who are new.

The troll status has been placed on "willey wonkers"  by  DJ, who is the web-master here.  There is a reason he did that.  DJ is a very kind and patient man about who posts here,  but not in HIS case...hence the troll status, as well as the neon green in his name.

Please pay no attention to anything he has to say.  He is here to cause derision, give very bad advice etc.  The best advice to deal with someone like him is to ignore him.


Linda


 

Linda is very wrong!!!!!!!  You can see alot of the alumni giving The Spainiard topic a good laugh.  Fact is alot of these peeps will make you believe you have to turn to meds no matter if you get temporary relief on what works for you!  You must do the MEDS.....if you don't then we must seriously question if you even have CH's!!!!!!


P.S.  If you do not run out and get O2 then you are lazy and maybe you don't even suffer from CH!

P.S.S.  Don't listen to the Troll!  Listen to those who say "Don't listen to the Troll!"

wrote on Sep 8^th, 2008 at 2:30am:

P.S.  If you do not run out and get O2 then you are lazy and maybe you don't even suffer from CH! P.S.S.  Don't listen to the Troll!  Listen to those who say "Don't listen to the Troll!"

P.S. = Post Script (after the script)
P.P.S. = Post Post Script (after the after script)
etc., etc.

Get it yet? Fool me once, shame on you. Fool me twice, shame on me.

Welcome to the board Josh.  As the saying goes, I'm glad you found us but sorry you had too.  This pain really sucks.  Fortunately, you've found the best place on the internet for support and information.  You've also found a family.


hayduke wrote on Sep 8^th, 2008 at 12:23am:

I'm taking 180mg of Verapamil every 24 hours and 6mg Imitrex shots at the onset of the pain, which almost always helps within 5-10 minutes.  I've been battling my insurance company and incompetent pharmacists to fight to make sure I get enough Imitrex to actually treat my incidences.  The insurance company rejects my prescription every time, causing a delay in when I can get Imitrex.  During these times I rely on the samples my neurologist has.  I'm blessed to have insurance at all, but why the hell can't they stop being such penny-pinching jerks and give me the medication my doctor knows I need?

Most insurance companies have a perscription limit override form available.  You take it to your Dr and he/she indicates how much you need for your condition.  I went this route with Blue Cross Blue Shield and upped my monthly supply to 12 / month.

Having said that I rely on Oxygen for my primary abortive.  It works great if you get on it quickly and use it correctly.  Imitrex scares the hell out of me because of the stress it puts on your heart and vascular system.  So I figure O2 is a good alternative if it works.  Unfortunately it only works for about 70% of us.  

180mg is a low dose of Verapamil for CH treatment.  Some use levels >1g.  My magic number seems to be ~400mg.  I've also had much better results using the regular release formulation.  I use it 80mg 7am/80mg 2pm/120mg 10pm.

Preventatives are funny things.  They can really mess with your cycles and there are always side effects to be balanced against the relief they provide.  Some decide to go without and rely on abortives only.  It really is an individual choice.


Quote:

I have a couple of symptoms that tend to happen whenever I get a cluster that are so consistent and I haven't really heard some of them mentioned here.  I'm wondering if others have them too.   I definitely get congested on one side of my nose/sinuses during the actual attack.  Once the pain hits, I almost always have to move my bowels (not glamorous to admit, but hey... nothing about CH seems to be) and I know the attack is over when the pain has subsided, nose is clear and I urinate.  I tend to spend many of my attacks writhing in pain on the toilet, or at least spend a good part of them on it.  I have a hard time sitting still on the toilet, but since I have to go, I have to be there.

I've heard this before.  Bowel movement is a frequent occurance for me too.  But it doesn't happen all the time.

Quote:

In some of my recent clusters (over the past two years or so), I've been also getting chronic neck pain (it doesn't go away after an attack and intensifies just before an attack).  I keep thinking the neck pain is a trigger for the attack, but I'm really unsure.  I've been going to a chiropractor to deal with the neck pain, which I've found to be reducing the number of attacks per day (I think... not sure if it is that or the Verapamil actually working).

I've never heard of Verapamil causing this.  I'd think it is more related to the stress of the attacks themselves.  We all tense up when we feel an attack coming on.  Couldn't hurt to mention it to your Dr though.  

Are the Chiropractic treatments helping with the neck pain?


Quote:

I'm curious to keep reading here and learn about other treatments/suggestions.  I tend to prefer natural or homeopathic treatments for health issues, but I've not found anything that produces results for my CH.  Any pointers to successful alternative treatments like accupuncture, massage, etc. would be great, but I don't have high hopes.

I don't think you can get any more natural than Oxygen myself.

There are several techniques around (Charlie's and the Spaniard's) for diverting the blood flow from the head to the extremeties but I haven't had any luck with them.  

I've been practicing yoga for two years now and find that the training on breath focus helps me remain calm during a hit which I belief reduces the kip level.  But not always.

Yoga has also improved my lung function which I believe helps make O2 more effective.


Quote:

Bottom line... I am so thrilled to have found this community of people.  I, like many others, have not met another person who has CH and no one around me really understands what I go through.  This has been negatively affecting my business, my relationships with my family (wife + 2 young kids) and it is an incredible relief to just know that there are others out there who do understand.

There is tremendous power in knowing you aren't alone and there are others who understand.  Welcome home.


Quote:

I look forward to getting to know you all!

And we look forward to getting to know you  8-)

-Dennis-

hello and welcome:
first and formost this place is about caring and compassion, also great advice. so ignore the troll. (united we stand and divided we fall)

I cant offer alot of advice that hasen't been mentioned yet so i will talk about how i am.

sleep- i use trazadone

bowel movements after a hit- me too but i noticed an increase with the use of imitrex injection

abortive treatment- oxygen,energy drink, ice, and imitrex
chiropractic- not for me, i have tried it and accupuncture with nothing but a big bill.

family and job problems- those beat me up as bad as ch.

having recently met my first cluster head and since joining this place i have realized i am not alone, someone does understand and ch doesn't rule me.

Thank you all (even the resident troll) for such a warm welcome!  After doing a bit of research, I decided I'm going to try Kilowatt3's mixture starting tonight:

Kudzu - 1000 mg, 2x per day (morning & night)  
Magnesium - 250 mg, 2x per day (morning & night)  
St. John's Wort - 300 mg, 2x per day (morning & night)  
Skullcap - 425 mg at bedtime  
Melatonin - 10 mg at bedtime  

I will report back what the results are.  It feels good to be at least trying something new and to have the support of this community.

Thank you all again!

U might want to start at small doses and work your way up if need be.

I have never taken the first 4 things on your list, but i do take melatonin.  I started with just 4.5mg of melatonin and it worked great.  I have taken as much as 12mg per nite, but I would reccommend starting much less.

Thank you, I probably should have mentioned that I received the same recommendation from a Naturopath MD here in Pittsburgh.  I'll be starting at 5mg of melatonin and see how I do (I've never taken it before).  Some of my actual doses will be a tiny bit off (lower) because of the mg strength of the supplements I was able to find at our local health food store.

I will report back with my actual dosages and results as they come.

G’day & Welcome

With the magnesium see if you can get the magnesium/calcium combo as the Magnesium on its own is a calcium blocker & you could end up with muscle & joint soreness, not as bad as CH of course but a bloody nauicence.
Cheers
Barry

Welcome to the funny farm  Clusterville. We're all here to help in any way we can. Sorry you had to find us, but you've come to the right place for CH. With this bunch, when we say, "We know how you feel", you can bet your bippy WE DO.

You asked about accupuncture... I went that route for about two months and while it felt great at the time .. I always got hit about two hours later. I quit it after about two months. Couldn't see any help for the CH in it.

Chiro... been there also. Got my neck and back lined up great, but didn't help the CH.

I swear by O2 (keep cafergot in case of emergency for abort). Lately the O2 and a can of energy drink has been doing it for me. (I hate meds if I forget to mention that, but I hate pain worse). I've been on topamax since 99 and it's been my miracle drug for a prevent (I'm chronic).

Melatonin has been great for stopping the night hits in a whole lot of us. It helps with the exhaustion by letting us get some sleep at night.

Again welcome. Got questions? We'll try to answer them. Wanna vent - we're here to listen. Welcome to the family...

Hugs BD

hayduke wrote on Sep 8^th, 2008 at 8:00pm:

After doing a bit of research, I decided I'm going to try Kilowatt3's mixture starting tonight: Kudzu - 1000 mg, 2x per day (morning & night)   Magnesium - 250 mg, 2x per day (morning & night)   St. John's Wort - 300 mg, 2x per day (morning & night)   Skullcap - 425 mg at bedtime   Melatonin - 10 mg at bedtime   I will report back what the results are.  It feels good to be at least trying something new and to have the support of this community. Thank you all again!

Hi Josh!

Don't forget to post your success story here, since not everyone may be following the other thread! :-)

Regards,
Jim

This is copied from New CH.com Forum › Cluster Headache Help and Support › Medications,  Treatments,  Therapies › Kilowatt3!

I started this last night and I can report my FIRST ATTACK FREE NIGHT IN ALMOST 5 WEEKS!!!!   Smiley Smiley Smiley    I am not going to make any other claims about success, but I had a full, beautiful, restful night of sleep for the first time in a long time.  Even if that's all this does for me, I can't thank Kilowatt3 enough for this!  Thank you, thank you, thank you!

For the purposes of helping others, let me explain what exactly I took (as I had to modify Kilowatt3's original mixture/amounts due to what was available at the health food store I went to purchase all of the supplements/herbs.  Here's what I took last night:

- Kudzu (900 mg - 2 pills)
- Magnesium (200 mg - 1 pill)
- St John's Wort (300 mg - 1 pill) -- The pharmacist recommended a pill that also contained 80 mg of Rosemary (leaf) and 40 mg of Spirulina (algae).  It's also worth noting that the St John's Wort was standardized to .3% dianthrones measured as hypericin.  This has to do with the accuracy of the potency of the herb in pill.
- Skullcap (.5 ml liquid drop) -- They only had skullcap in liquid form, and this amount equals 500 mg
- Melatonin (5 mg - 2 pills) -- The pharmacist (and others here on this board) recommended going easy on this for my first night to see how it goes.  I'm going to see my Naturopath MD and get her advice about the 10 mg dose.

I have no idea if this will or won't work for anyone else, and I have no idea what the next few days will look like, but I can absolutely attest that I was attack free last night.  I will continue to report back my progress.  I will also report back what my Naturopath MD has to say about all of this.  She has a double medical degree as a Naturopath and a Medical Doctorate, and I trust her opinion on these things a lot.   My biggest concern is just making sure that I am not solving one problem while causing others.

Thank you again, Kilowatt3 and thanks to everyone else who has contributed to this thread and shared their experiences!

-josh

An update:  Still no headache or even shadows today!  I went to see my doctor and she was very enthusiastic about this mixture of things.  She had several suggestions.  The first was to do what I did, which is to ramp up on the melatonin.   The only difference is how knocked out you want to be.  I may up the dosage tonight to see the difference.  The second comment from her was to keep an eye on the magnesium, because it could cause bad diarrhea.  I guess there is another form of it that you can take that has the same properties, but doesn't cause that.  I'll have to wait and see, I guess.

My neck pain has come back fairly severely during the day today, and I'm hoping it is not a foreshadowing of an attack.  I'm going to keep with the plan and work on some other ways to help my neck in the meantime.

Thanks again, everyone!

-josh

Your experience thusfar, and that of kilowatt3 with this combination has been intriguing.  I will be watching for further reports with interest.  

As far as the magnesium causing diarrhea, you may wish to consider adding 1000 mg. calcium to your regimen.  Calcium can ameliorate some of the diarrhea associated with magnesium supplementation.

Best wishes,

George  

P.S.--Nice reference in your screen name to "The Monkey Wrench Gang", btw.   ;)

George wrote on Sep 9^th, 2008 at 4:31pm:

P.S.--Nice reference in your screen name to "The Monkey Wrench Gang", btw.   ;)

Heh... most people don't get that.  Well read, good sir!   ;)

Yet another PF night!!!   I upped the melatonin to 7.5 mg in last night's dose, but I think that may be a bit much for me.  I am still really drowsy this morning.  But hey, a small price to pay for a pain free 36 hours, so far!

-josh

Congrats on the success, hoping it holds for you! I second the motion on adding the calcium supplement, it'll help some with the "loosey goosies! ;), additionally the magnesium leeches calcium outta your system so it never hurts to replenish it a bit. Hoping you continued success!

Guiseppi

Still PF, day and night, since Monday when I started taking the herbal supplement mixture described in this thread.  I can't recommend this more highly for others to try.   As best as I can tell, there's not much to lose.

hayduke wrote on Sep 11^th, 2008 at 9:18pm:

Still PF, day and night, since Monday when I started taking the herbal supplement mixture described in this thread.  I can't recommend this more highly for others to try.   As best as I can tell, there's not much to lose.

Way to go, Josh!

Congrats on your success!  Hope you'll keep posting daily for a while to let us all know how the treatment is working out.  You'll probably want to stay on the stuff through the weekend, but if you quit on Monday, I'm betting you'll find your cycle is broken :-).  If not, just get back on it for another week.

On the melatonin - If 5 mg is working out OK for you, I wouldn't worry about trying to "ramp it up".  There's some evidence that smaller doses of melatonin are actually more effective than large ones, at least for helping with sleep.  I dunno if the effects on CH follow the same rule, but I don't argue with success.  I included 10 mg of melatonin in my recipe simply because a lot of people had reported good results with dosages in that range.  If you're PF, then what you're doing is working!  Please pass the word!

Regards & GL!
Jim

hayduke wrote on Sep 11^th, 2008 at 9:18pm:

Still PF, day and night, since Monday when I started taking the herbal supplement mixture described in this thread.  I can't recommend this more highly for others to try.   As best as I can tell, there's not much to lose.

You know--this is getting quite interesting...  Three episodics reporting thusfar that this particular combination appears to have stopped an episodic cycle in its tracks.

I'll continue to watch this, with interest.

May I suggest that one--or all three of you--start a thread on the meds board specifically devoted to this topic?  Others could add their experiences to the thread as well if they choose to attempt using this combination.

Best,

George  

George wrote on Sep 12^th, 2008 at 2:27am:

hayduke wrote on Sep 11th, 2008 at 9:18pm: Still PF, day and night, since Monday when I started taking the herbal supplement mixture described in this thread.  I can't recommend this more highly for others to try.   As best as I can tell, there's not much to lose. You know--this is getting quite interesting...  Three episodics reporting thusfar that this particular combination appears to have stopped an episodic cycle in its tracks. I'll continue to watch this, with interest. May I suggest that one--or all three of you--start a thread on the meds board specifically devoted to this topic?  Others could add their experiences to the thread as well if they choose to attempt using this combination. Best, George

Hi George, and thanks for joining the discussion.

Actually, Cyndi had started a thread on the meds board (and embarassed me by calling it, "Kilowatt3!!!"), but the thread sort of wandered, so maybe it would be appropriate to start a new one.  I'm not sure what to call it, but I'll think of something.  Lemme know if you have any suggestions!

It's kind of funny, really - I had posted the regimen a couple of months ago on one of the boards, in response to an impassioned post by someone who vowed to "never rest" until she found a way to beat the Beast.  She never replied, or responded in any way, but continued posting all over the boards, talking about chiropractic, acupuncture, even that sinusbuster pepper-spray stuff.  All the while, I'm sitting here thinking, "Well, I've got something that works great for me - wonder why she won't listen?"

Meanwhile, Cyndi sees the post, runs (not walks) to the store to get the stuff, and has Lorne's cycle busted within a few days.  I think Josh saw her success story and decided to try it.  So, the posting seems to have done some good, even though the person it was originally directed to ignored it.  Go figure! :-)

Anyway, one of these days, I'll try to post a little more about the recipe, including my theory of why it works.  Keep in mind, though, that I'm not a doctor, a nutritionist, a pharmacist, or anybody else particularly qualified to discuss this stuff - I just found something that works for me (and for Lorne and Josh, apparently), and I have a theory (opinion) about why it works.  It appears to have a 100% success rate so far!

Thanks again for contributing to the discussion, and please join in as much as you can.

Best regards,
Jim

Hey, hey, hey! Don't be embarrassed by the title of my post. You quite possibly saved Lorne's life and my entire family's sanity. I don't know what it's like in other households with a clusterhead but ours was filled with fear, anxiety, depression, and tears during a cycle. And I'm not just referring to the actual clusterhead! We would have had many weeks left of this living hell if it weren't for you. And there is always a fear in the back of our minds that Lorne could harm himself if left unattended. If I could afford to put up a billboard on the freeway featuring you, I would do it. We now refer to your recipe, regimen, cocktail........as THE KILOWATT3.

Cyndi

Just a quick "hello" from the "new kid on the block" before taking a swing at getting some shut-eye (which I'm NOT really looking forward to, for obvious reasons.) But, I digress...

I would like to express my deepest and heartfelt thanks to the hundreds, if not thousands, of "we" afflicted AND THEIR FAMILIES, for the extraordinary support and wealth of resources they have so generously and thoroughly provided here.

While we all have so great an understanding of pain that it could last us 100 lifetimes, (assuming we manage to get through this one on a natural schedule) clients, friends, business associates, even some distant family members, don't. And, this can, occasionally cause some problems. "Oh, poor wittle Davey. He's got a boo-boo in his head. Maybe he just needs to get his blankie, curl up, and take a nap." The "I have a seriously bad, ferocious, JFK headache!" just doesn't seem to really register with people. Thus, it is appreciated beyond the measure of words that a site like this, abundant with support and commiseration, is here for people like us.

Though I've needed this for the last 25 years, it would be both an honor and a privilege if, during the time spent with you, I was actually able to provide something of benefit to someone else that would ultimately improve the quality of their life a little bit quicker.

Again, thanks and looking forward to catching up with you all a bit later...hopefully after a FULL NIGHTS rest ?

TW

Cyndi Leier wrote on Sep 14^th, 2008 at 1:13am:

Hey, hey, hey! Don't be embarrassed by the title of my post. You quite possibly saved Lorne's life and my entire family's sanity. I don't know what it's like in other households with a clusterhead but ours was filled with fear, anxiety, depression, and tears during a cycle. And I'm not just referring to the actual clusterhead! We would have had many weeks left of this living hell if it weren't for you. And there is always a fear in the back of our minds that Lorne could harm himself if left unattended. If I could afford to put up a billboard on the freeway featuring you, I would do it. We now refer to your recipe, regimen, cocktail........as THE KILOWATT3. Cyndi

Hi Cyndi,

Just kidding!  I'll get over it! ;-)

I'm sure glad that Lorne had such success!  I'm assuming that he's remaining PF the last week or so (?)  Over on the "Kilowatt3!" board, it looks like another fellow is off to a good start.  TJ posted that he was starting last night, and this morning he reported his first PF night's sleep in weeks.  He couldn't find the skullcap locally, though, so had to order it, but he should have it tomorrow.  I'm sure hoping for another success story.

Anyway, thanks for the feedback, and please stay in touch!

Regards,
Jim

P.S. In your family pic, which of the three girls is you?

LMAO! I'm the little old one in the middle. Left to Right.......
Rachel 17, Me, Lorne, Casey, 26 - she's the Master's Graduate.
Yes, you killed Lorne's cycle dead in it's tracks without a single sign left of the demon whatsoever. Should be good for about a year or so. I can't leave this site until I hear more success stories.

Hey, I just learned a neat trick. I use a PC and if I right click on a user's icon (picture) I can then left click "view image".......and ta da! Full sized image. I can see how truly beautiful your car is now!

Cyndi Leier wrote on Sep 14^th, 2008 at 1:47pm:

Hey, I just learned a neat trick. I use a PC and if I right click on a user's icon (picture) I can then left click "view image".......and ta da! Full sized image. I can see how truly beautiful your car is now!

Hi Cyndi,

Well, I have to admit, that's not actually my car.  I have one just like it (1952 Jaguar Mark VII), but mine hasn't been restored yet, so I have a LOT of work ahead of me!  The pic is a reminder of what CAN be, not what IS!  :)

Josh reports on the other board that he is still PF, and is planning to stop the regimen after tomorrow night.  Let's cross our fingers & pray that he's in the clear!  I'm sure glad that your success with Lorne has helped get a couple more people interested.  Wonder if you've heard any more from any of the people who had PM'd you about the ingredients?

Stay in touch, and all the best to the family,
Jim

Okay, Jim, so here's what I propose:

I'm very much a clockwork episodic, and my cycles have always been very predictable.  As time has passed, they have become less and less frequent, but they still average 6 to 8 weeks in length, ramping up rapidly, peaking at high cycle for around two weeks, and then slowly subsiding.  This has been the pattern for me for better than forty years.

I'm not due for another cycle until the spring, but if the thing comes around again (which I figure it will) I'm going to give this regimen a shot.

In the interests of a fair trial, I'm going to let the cycle ramp up all the way, and then start the regimen.  Give it something to chew on.  If it brings the thing to a screeching halt, then you'll have a serious convert.  Nothing has ever stopped one for me before the thing has run its course.

Six months to go before I can give it a go, but I'm not going to forget.   ;)

'Course, if the beast doesn't show up, I'm not going to go out looking for it, you understand...

Best,

George

George wrote on Sep 16^th, 2008 at 3:40am:

Okay, Jim, so here's what I propose: I'm not due for another cycle until the spring, but if the thing comes around again (which I figure it will) I'm going to give this regimen a shot. In the interests of a fair trial, I'm going to let the cycle ramp up all the way, and then start the regimen.  Give it something to chew on.  If it brings the thing to a screeching halt, then you'll have a serious convert.  Nothing has ever stopped one for me before the thing has run its course. Best, George

Hi George,

Thanks for posting.  A couple of thoughts:

I understand your wanting to see if the mix can knock out a cycle at its peak, but hang on a sec...  What's actually more valuable to you; something that will wipe out the second half of a cycle, or prevent the cycle altogether?

Fair trial?  Doesn't seem very fair to you to have to have half a cycle that you don't need to!  :o

Consider, too, how much emphasis everyone puts on jumping on their abortives quickly - We all know that the effectiveness of O2 or Red Bull is highly dependent upon getting on it fast.  Might not the same hold true for this preventative mix?  Lorne, Josh, and I have all had good success starting on the stuff mid-cycle, but why not give ourselves every advantage we might have?

As an aside, my theory of why the mix works would suggest that the sooner you get on it the better, too.  I've promised to post the theory when I get a chance, and I will - just haven't gotten to it yet.

Anyway, thanks for posting, and whatever you decide, good luck with it, and please let us know how it goes.  My suggestion is that you just DON'T HAVE another cycle, then you won't have to worry about it!  ;D

Regards,
Jim

Indeed! Lorne's cycle was at his peak. That's what made me come back to this site, frantically trying to find something, anything, new to try. Within 1/2 hour I found Kilowatt3's post and I couldn't grab my purse and keys fast enough to get out the door to zip to the store. The effects were immediate and all that remained were a few scattered K1-2s for a week or so. Then poof! Those disappeared. If we had started this regimen at the beginning of his cycle we may not have been a full believer either........

Cyndi Leier wrote on Sep 16^th, 2008 at 10:14am:

Indeed! Lorne's cycle was at his peak. That's what made me come back to this site, frantically trying to find something, anything, new to try. Within 1/2 hour I found Kilowatt3's post and I couldn't grab my purse and keys fast enough to get out the door to zip to the store. The effects were immediate and all that remained were a few scattered K1-2s for a week or so. Then poof! Those disappeared. If we had started this regimen at the beginning of his cycle we may not have been a full believer either........

...Well, "full believer" or not, I betcha Lorne would've started back on the stuff once his next cycle started cranking up!  ;)

I really do have a concern, though, based on a sort of "what if" scenario:  What if the mix really should be taken as early as possible, and there's a high probability that it won't work if you wait until too long into a cycle?  Maybe Lorne and I were just really lucky that it worked, even though we really started it way too late?  If that were the case, then if George waits until his cycle is at its peak, it might not work.  George might just blow it off, believing that the regimen is worthless to him, when in reality it could've stopped his cycle cold if he'd just started dosing at the first sign of a cycle!  I'd sure hate to see that happen!

Another observation on my part - The very first time I tried the regimen, I was in mid-cycle, and it took just shy of a week to knock it out.  As you said, Lorne was at peak cycle when he first tried it, and I think you said it took 8 or 9 days (?) to completely break the cycle.  The second time I used the mix was last spring when I started back into cycle, and I started on it the very first time I had a genuine HA (not just a shadow).  That was my first and last HA for the spring!  Granted, this is a very limited set of data, but it sure supports my belief that we oughtta start ASAP once we know a cycle is cranking up!

YMMV, but at least the mix is doing some good for a few folks!

Regards, & stay in touch!
Jim

P.S.  Any word from anyone else, e.g. the folks who had PM'd you about the ingredients?

Let me rephrase......I think if Lorne had taken it early in his cycle and his headaches were knocked out immediately, he probably would have attributed it to a 'coincidence'. He is a pretty skeptical fellow which I don't think is an unusual characteristic for a male. That's not to say he wouldn't have tried this regimen again for the next cycle. He just wouldn't have been as impressed as he is now. For him to deem something as a 'miracle' is very out of the ordinary. And you better believe he'll never be without these herbs again. He's definitely not going to waste any time starting the regimen for his next cycle. I sure wish he could type better and get on here himself. He is very to-the-point the first time around. Unlike me, with the yappy female characteristics.......... :-*

Certainly, on a personal level it would be valuable to me to have a cycle killed before it really got started--but in the interest of others here who might wish to try this regimen, I'm willing to hold off starting the thing until I'm in high cycle, in order to see whether it can kill the thing when it's full-blown.    

Granted--whatever happens will be only a single individual's experience and anecdotal, but it may be worthwhile.

Actually, I'm very curious to see whether this combination might change the pattern of one of my cycles, and end it abruptly.  My cycles have been remarkably consistent throughout the years, and have never gone away until they've followed the whole miserable 6-8 week pattern.  

Clearly, this regimen has not extended a cycle for anyone who's tried it thusfar, nor has it increased the number of hits within a cycle.  Those are my biggest concerns, and the reason I don't use some of the pharmaceuticals that are prescribed for CH.  I don't want to make them worse.  

As far as waiting until I hit high cycle to start--well--I've gone through many, many cycles with nothing at all, so I know I can do it.  Nothing I haven't done before.  

So--no worries.  There's no downside.  If it doesn't kill a full-blown high cycle, then no big deal, because nothing else has ever done that either.  If I start the regimen, however, and a week later the cycle is dead, then--based on past experiences--I'll be able to assert that (at least to me) there is convincing evidence  that the regimen had something to do with that, especially since I take no other medications for CH, and have not done so for a long time.

Seem reasonable?  'Bout time I stepped up as a guinea pig for an experimental treatment around here anyway.  ;)

Again, it probably won't happen until May, so don't expect results one way or the other for a while...

Best,

George  

I don't know what the policy about swearing on this site is, but consider this sentence a substitute for a whole string of epithets!  I've been PF for the week and thought, "Ok, time to back off the regimen" and so last night I didn't take the herbal supplement mix.  Whamo... 3:15am I'm awoken by a pretty major headache (kip 7-8)!!   I just took a 4mg Imitrex shot which seems to have knocked the pain part out.

Things are very stressful at work right now, so it probably was a stupid time to back of the mixture.  Because of the headache, I feel like I'm not thinking rationally (I feel like Dr. Jeckyl and Mr. Hyde sometimes... could CH's be the inspiration for the book), but I wonder when I'll ever be able to not be on the mixture?  

-josh

George wrote on Sep 19^th, 2008 at 2:01am:

Certainly, on a personal level it would be valuable to me to have a cycle killed before it really got started--but in the interest of others here who might wish to try this regimen, I'm willing to hold off starting the thing until I'm in high cycle, in order to see whether it can kill the thing when it's full-blown.     Seem reasonable?  'Bout time I stepped up as a guinea pig for an experimental treatment around here anyway.  ;)

OK George, but I still have one question:  If, in fact (and granted, it's a big 'if') the regimen can completely prevent a cycle, then why would you care if it can 'kill the thing when it's full blown'?  Just don't ever let the !%$ thing get full-blown!  :o  You avoid a lot of pain that way!

Sure, knocking down a cycle at its peak might be a more dramatic demonstration, but is it really the preferred treatment???  I guess the one advantage is that it'll make a believer out of someone pretty fast!  ;)

Anyway, glad you're planning to give it a try.  Bet you just can't wait for your next cycle so you can try it!

Regards, & stay in touch,
Jim

hayduke wrote on Sep 19^th, 2008 at 3:54am:

I've been PF for the week and thought, "Ok, time to back off the regimen" and so last night I didn't take the herbal supplement mix.  Whamo... 3:15am I'm awoken by a pretty major headache (kip 7-8)!! Things are very stressful at work right now, so it probably was a stupid time to back of the mixture.  Because of the headache, I feel like I'm not thinking rationally (I feel like Dr. Jeckyl and Mr. Hyde sometimes... could CH's be the inspiration for the book), but I wonder when I'll ever be able to not be on the mixture?   -josh

Josh,

Sorry to hear you got hit!  Looks like you've established two things, though:
1) The mix was keeping you PF.
2) A week is not long enough for you to stay on it after your last hit!

I wouldn't sweat it too much, though - At worst, maybe you'll have to keep taking it until your cycle normally would have ended.  There's nothing in there that's gonna hurt you to take for a few weeks, or a few months, for that matter!  Get back on it, give it another week (or two) and let us know how it works out.

Regards,
Jim

I wonder when I'll ever be able to not be on the mixture?  

-josh[/quote]

I think Lorne was on it for 2 weeks. 1 week without the proper kudzu dose (we had to mail order for the kudzu root) and then another week with the correct dose. We are not in agreement about the # of days for the regimen. However, he should know I'm right because I'm the one who set out his pills twice a day. I wish we kept an exact record.

Don't bother with accupuncture I tried it 6x over two weeks NOTHING.

Dick

Cyndi Leier wrote on Sep 20^th, 2008 at 12:18am:

I think Lorne was on it for 2 weeks. 1 week without the proper kudzu dose (we had to mail order for the kudzu root) and then another week with the correct dose. We are not in agreement about the # of days for the regimen. However, he should know I'm right because I'm the one who set out his pills twice a day. I wish we kept an exact record.

Hi Cyndi,

From our correspondance, it looks like Lorne started the mix on August 2, and immediately had a PF night's sleep.  On August 6, you reported that he was down to a single K1-2 per day.

On the 18th, you said he'd been PF for a few days and had tried stopping the regimen, but that he got hit again, so was starting it back up.  On the 26th, you wrote that he was off of everything and still PF.  I think you mentioned he'd been PF for about 5 days.

So, about 3 weeks start to finish.  Not bad!

Hoping a lot of others find relief with this real soon.  I haven't heard anything back from Josh or TJ in a couple of days.

Stay in touch!
Regards,
Jim

Hell, you should be my secretary! I got out my little day planner and between the few scribbled notes I jotted down, and my posts and PMs to you, I have come to the conclusion that you AND Lorne are right.

The 1st week we had to substitute the kudzu root with kudzu flower due to availability probs. Lorne had PF nites and a few AM K1 - K2s.

The next week the real kudzu arrived via mail order which rendered him PF for a week so he stopped the regimen. That next day he had a K3 and started up again for another PF 5 days.

So almost 3 weeks total, but only 12 days with the exact recipe. So that means during the 12 days of your exact ingredients he was PF with the exception of the K3 when he tested the waters too soon.

I am now going to copy and paste this into a doc to save for future reference. Although, I don't know why I should bother.......I'll just ask you in a year!  LMAO!

So sorry not to have posted for a few days!  I've been completely PF since going back on the herbal supplement mix.    That's the great news.

My only "issue" is that no matter when I take the melatonin/skullcap hit at night (I've done it as early as 9pm), I have trouble waking up the next morning.  I have to help get my 1st grader off to school in the morning by 8am and she's taking to calling me droopy because I can barely keep my eyes open.  My situation now is SO MUCH BETTER than having headaches, but I'm wondering if I should consider an adjustment to the melatonin or something else.   Any ideas?

Once again, I am so thrilled to be PF and will continue on the regimen through next Monday, given some of the problems I had experienced with trying to stop too early.   I'll be on an airplane traveling for business next week, and to think I can do that without the pain is so amazing!

-josh

hayduke wrote on Sep 26^th, 2008 at 5:10am:

So sorry not to have posted for a few days!  I've been completely PF since going back on the herbal supplement mix.  That's the great news. My only "issue" is that no matter when I take the melatonin/skullcap hit at night (I've done it as early as 9pm), I have trouble waking up the next morning... My situation now is SO MUCH BETTER than having headaches, but I'm wondering if I should consider an adjustment to the melatonin or something else.   Any ideas?... -josh

Well Josh,
From your post on the other board, it sounds like a moot point for this cycle  :D

What dosage of melatonin did you end up with? 5 mg?  Maybe next time you'll want to try a little less still - maybe 3 mg or even 1 mg(?).  I'm not convinced that the big 10 mg dose is essential to the mix - I just included that amount because several people had reported good results with dosages in that range.  As I've mentioned in a couple of other posts, in some respects at least, melatonin seems to work better in lower rather than higher doses.  One study found that a 0.3 mg dose worked BETTER than a 10-times-larger 3 mg dose for helping with sleep.

Anyway, congrats on your success, and pass it on!  Please stay in touch.

Regards,
Jim

Josh, hello and welcome, i am also a long term sufferer but new to this site, whilst i feel bad to mention it i have been pain free for around 7 months. I do get very bad nasal blockage during an attack and also deep pain in my jaw and teeth. I'm glad you have no pain at the moment and long may it continue. I live in the uk where we don't have med insurance etc, i was on almotriptan for a while, but think i have just got lucky recently, i know the FIEND will be back one day but till then i just crack on !!!!
Best of luck to you

Terry