30 yr cluster headache patient//new cluster just started/need fresh ideas on how to kill it//in past used decatron shots (sometimes helps)//oxygen and imitrex to kill individual headaches///need one to kill cluster cycle//anyone tried botox?
sj

Hi sj   [smiley=wave.gif] 

Have a good read around these boards and you will find a lot of information about Vitamin D3. It has taken these boards by storm and is successful for 80% of those who try it. It's vital that you take it, and it's fellow  components, correctly and you must get your blood tests for your own safety. Once you have reached the necessary level of D3 you may find you never have another cycle. Some folks who were chronic for 30 or more years have been totally pain free for several years. I have been taking it myself for 2 1/2 months now, and although I have gone into a cycle (I can feel the signs) there has been no pain. It's all over the counter stuff - cheap to buy (especially if you shop around on line) and even without CH it's good for you in so many other ways. Sorry I can't post a link (computer dunce) but maybe some one else will come along and do it.

For a quick fix, try chugging down a red bull, really fast at the first sign of pain. It's the combination of caffeine and taurine in a sudden hit that does the trick so any energy drink with those ingredients will do. It doesn't work for every one but many around here will swear by it. Well worth a try.

And finally, welcome to clusterville. You will find more help and knowledge here than any doctor will ever give you. Feel free to come back with any questions, or to just have a rant if you need to.

Good luck with the D3. Please try it.

Best wishes
Maz.

Welcome to the board SJ. Are you working with a headache specialist neuro yet? We have seen the best results from doing so.  I’ve had CH for 35years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach. But first and MOST IMPORTANTLY

Follow this link to the medications section of this board and read the post 

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It's what Maz was referring to, it’s a vitamin/mineral/fish oil supplement, all over the counter stuff. It’s up to an 81% success rate of those who try it and respond to the survey so you’re just shooting yourself in the foot if you don’t give it a shot. I’m 3 years pain free on it after a 35 plus year track record with episodic CH. Best of all, it’s healthy for you even without CH!

As of January 20, 2013, the compiled raw data indicates an efficacy of 80%. 240 out of the 300 CH'ers who have started this regimen and stayed on it for a month or more have experienced a significant reduction in the frequency and severity of their CH... 78% of the 300 CH'ers experienced a pain free response and 60% of the 300 have remained essentially pain free. Episodic and chronic CH'ers respond to this regimen at roughly the same rate.

Preliminary survey results indicate most of these CH'ers were pain free before the end of the third week with some responding in a little as 12 to 24 hours. The average time to respond is five days

So all that follows will be worthless I hope……….but still…

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time. A small percentage of CH'ers can actually abort a cycle with a prednisone taper but that's a small minority.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This link will show you how to get set up with welding oxygen:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.


For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it. If you're looking to "Bust" a cycle, this should be your first stop.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location.
==========================
If al possible:  LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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.
============
Always helpful if you give a history of you treatment efforts; meds, doses, etc. Othewise we are replonding from the kindergarden level.
==

See the PDF file, below. Current outlining of treatments.

---

thanks....what dosage of D3 do you take

sj

Hi sj and welcome,
I take.  1/day Centrum 50 plus multi vitamin.
           1/day fish oil 1.042g, (DHA) 248.7mg, (EPA) 352.3mg
           500mg Magnesium citrate /day.
           400mg Calcium citrate /day.
           10,000iu vitamin D /day.
           15mg Melatonin before bed time. [smiley=sleep.gif]
          
          Good Luck, Hoppy.

sj wrote on Oct 14^th, 2013 at 1:40pm:

thanks....what dosage of D3 do you take sj

Complete Regiment found here:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

thanks ill try it...what mg of d-3 do you take every day...just found a new drug called relpax..a pill...when headache starts ive taken two so far and it seems to reduce intensity almost immediately and within 8-10 minutes kills the headache...it is a constrictor so cant take to much

sj wrote on Oct 17^th, 2013 at 5:48pm:

thanks ill try it...what mg of d-3 do you take every day...just found a new drug called relpax..a pill...when headache starts ive taken two so far and it seems to reduce intensity almost immediately and within 8-10 minutes kills the headache...it is a constrictor so cant take to much

Read through the regiment.  Batch (the creator and author of the guide) is very detailed in his method.  Please read it, share it with your doctor and ask lots of questions.
Standard regiment is 10k IU d3 daily with largest meal of the day along with the other co factors, zinc, mg, calcium, and fish oil. 

BUT READ THE REGIMENT! :)

Relpax is a triptan and some have found it to be useful as a rather slow acting abortive. You might ask your doc about Sumatriptan injections (Imitrex) which are much faster. There are two kinds out there: a vial and needle that allows you to regulate the dosage, and an autoinjector that pumps 5ml into you at the push of a button. Works fast but meant only as an abortive, not a preventative. blessings. lance