I first developed these nasty things in 1999. I was in my early 40's. They came on gradually and became fairly persistent over the next several years. Saw a couple different neurologists and tried several drug treatments for prevention, but nothing was successful long-term as the CH always won in the end. Immitrex stat injections helped abort the attacks, but wasn't a good solution, IMO -- too expensive and side effects that rag me out.

I quit smoking in 2005, since that was a trigger, and the attacks gradually subsided. By mid to late 2006, I was in full remission ... no shadows, no attacks, so attributed my success to having quit smoking.

I've been attack-free since then, that is up until this spring (2013), but now they're back seven years later with the spring. Now getting several a week, middle of night and during the work-day. I have a stock of old and new sumatriptan, but I use it only as last resort when I'm in considerable pain. I haven't gotten into neurologist yet, and am trying acupuncture in the meantime. I don't know if there's anything a neurologist can offer as their drugs are hit and miss with tons side effects and expense, and the attacks have always still bled through them eventually.

Doesn't look like much has changed on the treatment front since 2005. Open to exploring other non-conventional treatments, which is why I'm trying some acupuncture. If I want to try mushrooms out since many report success, how do I move forward on this?

G'day, and welcome, sorry to hear the Beast returned. The D3
is the go now it has been getting good results in treating
CH's, just type it in on this board, "Vitamin D3 Regime"
If you want to go down the mushroom road, check out
ClusterBusters on the left of this board all the info you
need is there.

Hoppy.

Hi CB and Welcome

  Please read my post on TeeJ2379's thread for a history of my travels with the beast . . . will be on page 2.

  After ten years chronic, have now been 18 months without an attack using the D3 regimen (See Batch's post "123 days Pf and I think I know why.. . . currently over 110,000 views)

  RE the accupuncture.  General consensus is that it's probably useless.   However, in 04', prior to major surgery, I saw a practitioner in Chattanooga (Dr. Yeu Pei Wong) for about three months.  Although I always had my backpack with a "B" tank of 02 at hand, never had an attack on the table and the attacks I did have were minor and easily killed with 02.  Dr Wong (doctorate was in philosophy) was a  third generation accupunturist, herbalist (huge apothecary) and martial artist/instructor.   Since he was also furnishing me with several varied herbal remedies, it's quite possible one of them might well have been a kudzu suplement which the Chinese have used for migrains for centuries and there was much posted about it a few years back . . . . many reported complete remission.    I believe Clusterbusters may have info on that also.

  So . . .  can't say that the reduction in frequency/intensity during that time was due to the accupuncture or herbs or combination of the two, but I was in much better overall health for the experience.

  Dr Wong was well known in the Chattanooga area and is sorely missed by many.  He passed away a couple of years ago.

    Be Safe,    PFDANs

      Richard

Ref. your reply #3:

This statement appears on the home page of this site. While it's legal boilerplate, that doesns't mean it's not valid/true.

"DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional."

CeruleanBlue wrote on Jun 17^th, 2013 at 3:47pm:

And there you have the nature of the Beast; it doesn't go away forever. But, that doesn't mean it can't be managed. I would encourage you to do the following:

1. Read as much of the D3 post as you can, beginning at the beginning and skipping around.

2. See a headache specialist.

3. Realize there is a tradeoff to everything; if you prefer the pain to the meds, there you have it.

4. Investigate the proper way to administer O2 for CHs: equipment, flow rate, technique...it's a life saver.

5. Check out all the "side" things: energy drinks, melatonin, supplemental vitamins etc.

6. Go to clusterbusters and check out their techniques and see if that's right for you.

Be proactive. Your open ended question is self-defeating by itself. Lots of new ways to understand the beast, and a few new ways to beat it back. Good luck and God bless.
lance

Hi CeruleanBlue,

What is the exact regiment you are taking?  The full regiment is posted here:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I've been on it for a month and it has reduced my hits and their intesisty, to the point now where I don't have bad hits, just shadows.  I'm on verapamil as well - be sure you space your verapamil dose by 8-12 hours to when you take the calcium in the regiment. as they can interact or contract eachother.  I was on a two week taper of predisone (80mg over 14 days tapering down to nothing) as well to get some relief which is what it sounds like you need so you can give the verapamil and d3 to build up in your system.  Predisone will hamper the D3 a little bit, but I think it still helped me by taking it at the same time. Also look at Melatonin for night time, i take 15 mgs a night, but you should started on 5-10 to see how it affects you.  It may help avoid the night time hits.  During the day, try some energy drinks if you can.  Monster Java is one of my favorites and it helps with my shadows greatly.

Again, we are not docs but just fellow sufferers sharing our experiences.

As far as seeing a neurologist - be persistent - I had the same deal where all the appointments were booked for two months - I called every day checking for cancellations.  By calling every day I got lucky and got in within 2 weeks.  You are your best advocate, and you are the one most motivated by your pain.  Call daily, call multiple offices every day checking for cancellations. The worse they can say is no.

Good luck my friend and keep us posted on your progress.

Don't give up on the D3 Regime. I started on it during my Spring
2012 cycle, like you it did'nt abort my attacks, in fact for the
first time in 43yrs of sufferering from CH's they were all over
the place. But the good news is, no CH's this Fall 2013.

Hoppy.

I've never had an O2 setup. Don't have a prescription for it, or doctor to prescribe it -- unless I get my personal doctor on board. Bottom line is that one may take some time to setup.

CB,   From what I've learned ( might not be the gospel truth) welding and medical ox come from the same tank but the medical tanks and process are cleaner.  Same pure oxygen though. If you want relief like right now, go buy an oxygen tank and regulator at a local welding supply store. I can't guarantee you it's 100% safe but I've been using both types for years now and I'm still kicking. I'm paying for my own medical oxygen also, I found out the medical ox people were sticking it to the insurance co. when I changed coverage and my new policy didn't cover it. But they give the self payer a break--- it's not that expensive to get your tanks refilled but you need a script to get started.
     My 92cf welding tank lasts quite awhile and costs 21.00 to get refilled.

           Good luck,               Sean

CeruleanBlue wrote on Jul 17^th, 2013 at 11:57am:


Ring up often and ask for cancellations or last minute availability. You might just get lucky.

However it always amazes me that a neurologist who should know the pain that untreated CH gives does not prioritize CH or suspected CH patients. A few do, but most don't.

As for verapamil, I'm convinced that they include concrete dust in the recipe for making it. The constipation seems to get better over time plus it helps to take plenty of fluids and to eat a good, healthy diet.

Hi CB,
If i were you i would check in with the first one and if i'm
happy with the advice given, then cancel the second
appointment.

Good Luck, Hoppy.