Welcome and Nice to meet you violinmaker!

What an interesting career you have!

Sounds like you know the beast CH well my condolences on that.  I have had my share of K-10's as well, thank God for family around to help.  Don't know what I'm going to do when they are not.

Sending some PF beast a$$ kicking vibes your way & a little info.

4-Way Nasal spray or Dristan 12 Hour Nasal Spray helps with the annoying congestion.

Taurine and Caffeine drinks (RedBull if you like it) to help prevent a hit when you feel one starting.

Melatonin or an Allergy pill at night before bed to help avoid night time hits.

The herb Kudzu has helped a few as a prevent.   

Deep breathing through the milder hits can help too.

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... not looking forward to this new cycle.

Hi and welcome.  Glad you've read some here already.  Getting through a cycle can improve, sounds like a rough start.  There's support, experience for any questions, and different ideas you just might use to keep prepared with that may help. 


The clusterbuster method has had success in stopping cycles. 

There are preventive meds taken daily that can cut down or even eliminate most hits during a cycle to help manage. 

With your shop in-house, you would never be very far from oxygen for any oncoming hit.  Having bumped into doors, walls, and furniture at night, I keep it conveniently located.

Welcome, and yes, we all know what you are describing, but the stories of vitae interruptus are always painful to hear. Good advice given above. Check out the O2 link on the left. I and the vast majority here swear by oxygen. You need a high flow (15-25lpm, well above the respiratory therapy rate) and a non-rebreather. Your goal is O2 saturation so be careful not to introduce room air while using it. What have you tried for a preventative? Do you have a good neuro or headache specialist who knows and understands CHs? God bless! lance

No question you understand the pain of CH, ouch. :'( Let's see if we can alleviate that a bit. You've got some pretty good medical centers there in your part, have you worked with a headache neuro yet? You've probably already seen my program, it's not the only one but it is a popular one, it's 2 pronged:

1: A good prevent med. Verapamil, Lithium and Topomax are the most popular, taken daily while in cycle the goal is to reduce how many times you're getting hit and how severe the hits are. Some have to combine the verapamil and lithium to get relief. I use Lithium at 1200 mg a day. Has very little effect on me, a cup or two of coffee overcomes it, and it blocks 60-70% of my hits.

2: A good abortive. Yeah, please get some oxygen! 6-10 minute aborts beat the heck outta the 90-120 minute rides I used to take. Imitrex injectables are expensive but are great when I'm caught away from 02. Imitrex nasal spray has worked for many. Don't take the imitrex pills they don't help much for CH, especially people like you where the onset is so rapid.

Do look into the energy drinks, I use them with my oxygen on the big hits, and by themselves to chase shadows.

Clusterbusters.com             has helped a lot of people when traditional medicine has failed, worth a look.

Hang in there, glad you checked in!

Joe

Welcome Violin man!

I certainly appreciate the craftsmanship of your trade.
I play guitar and bass guitars so it is a distant cousin, plus I do woodwork on the side.  I tinker with making furniture, rustic style. 

Now, what you have is pure hell.  If it is cluster headaches that you have, you have found the right place.  I'm assuming you have been diagnosed by a pain management or headache specialists/neurologist?  What the others have said so far is great info.

You'll see oxygen to be the #1 abortive used on here.
If you can get set up even with a welders tank, you can buy the regulator and non-rebreather mask here at the CH.com store on the left of your screen.  If it works, you'll find a new love and you'll be able to live your life again w/o this pain.

There are many preventative drugs that are available to control your cycle and there is even natural remedies that you can read about on START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (it's not for everybody, but very affective).

Just read as much as possible, absorb it and read it again.  Remember O2 is our friend.  Those energy drinks can help too.  Make sure they have 1000mg of taurine in it.  You need to guzzle it too at the first sign of a attack.  It may not abort, but it will bring the severity down. 

Ask us as many questions as you want.

All the best!

-Chad

Do hope that you are working with a good head doc--NOT any general neurologist!

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

Welcome Violinmaker! Would love to see pictures of some of your projects someday (on the general board and when you're not in such terrible pain).

Hope you find the daily interaction here helpful - and that you can take the oxygen info to your CH doctor. Honestly you can skip the ride you're taking for hours each day by breathing pure oxygen for maybe 10-15 minutes to beat this guy. My husband does that, along with downing a redbull drink to help with the after-effect shadows.

There are also the prevent meds that help reduce the number of CH attacks and/or their intensity.

Grab a seat and do some reading. Make sure your printer has ink because you're going to want to print some stuff out to take to your doc.

Welcome.

Christy

Hey violinmaker -  I just want to add a ditto to what the others have said regarding O2, clusterbusters, etc., and that despite the really bad start to this episode with the plumbing disasters and all, we're really hoping you can suffer a LOT less this time around. Many of us are doing so much better after adopting the suggestions offered here.

Cool violin making profession you have there, and man that SUX that the CH had to interrupt your Stradivari inspection!  >:(

Hi violinmaker, sucks you had to find this place and sorry about your pain.  A lot of good advise given by long time sufferers and if followed hopefully things won't be too bad this time around.  They still suck, but rarely do we have to indure the KIP10's with something as simple as O2.  Works a LOT better than a hot shower.  A LOT.  In case I didn't get my point across, A LOT!!!.  Gotta have a high flow.  I've got a 25lpm on the way from my provider.  15lpm works pretty good, but I've had a few that still try and hang on too long.  Mask is just as important, gotta have the no-rebreather, you wan't nothing but a set of lungs full of O2.

Lot of good reading here, and printing some of it out helped me get the proper prescription for O2 for my new provider and the insurance company to accept from my GP.

Pretty cool side job

Hi and Welcome!

Wishing you pain free times and hope this cluster doesn't last to long. You've been given some great advice, please remember information is power. It's great that you have such a passion for your work, let's hope you can get back to it soon.
                             Regards Shell :)

welcome,

I hate the fall too.

Coach Bill 8-)

Chiming in with a belated welcome- keep at it- per my reading on the CB site it's pretty specific on the dosing times, hopefully you broke the cycle though, fingers crossed and happy you have pain free time!

I'd suggest a welding O2 set up with a non rebreathing mask for those that do break through if you have any- Marc is the guru on that, but many could talk you through if interested.

Also, send us your woman! Sounds like you and she talk about your CH and she's on board for ANYTHING that gets you relief- smart girl! I'm a supporter too, sometimes we need to fight and search for our sufferers when all they're energy is taken with surviving the next hit. I did it for my husband; trust me when I say she can play an active role in getting you relief!

And even when he does have to suffer a headache till the O2 kicks in, he tells me even when I can't help his head I help his heart knowing I'm there with him and for him.

And interesting job you have there- my father is a musician and was the guitar repair guy in town for years. That's my mental image of him, ankle deep in sawdust, pipe smoke in the air, Marty Robbins on the reel to reel he had in his shop, and a guitar in front of him. I have nothing but respect for the detail and attention that takes!

That is pretty amazing violinmaker - so you didn't even feel any "stoning" or other effects from the mushrooms?

How long has the PF time lasted so far?

Wow - that is fantastic.  :) Here's hoping the PF time just keeps on going and going.

There is a thread entitled "Time for the 75-80% to stand up and be counted" in the Medications, Treatments, Therapies forum here that encourages those who have tried busting to report their experiences - it would be cool if you could check in there.

Welcome. So glad you've gotten sound advice and found relief.


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No im not a mormon I was raised in texas and moved here.

Just curious - what difference would this make?

ditto on hating fall...

Glad you made it here.  Thanks for sharing.  As for wood work, I can cut fire wood and it stops there.  But I can cook BBQ that will make you want to slap someone... 

Blessings...

Nothing like it when a cycle breaks, and I really pray this is the case with you.  8-)