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

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

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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.

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:

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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

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.

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!

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!"

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:

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.

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

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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.

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

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And we look forward to getting to know you 

-Dennis-

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!

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.

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

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

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.   

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