Hello to All Clusterheads! It's been along time since I have posted to this site. I've been Chronic since 7-2000. Under the treatment of UCLA since. I've undergone several exploratory surgeries, including the first D.B.S. patient in L.A. CA. I use o2 ( 12-15l ) tried every medication, acup, chiro, you name it I've tried it. Currently on 540mg Verap, Imitrex, Red Bull. I tried the 5K Omega Fish Oil with D3 vits. NO HELP!
  My brother who is also Chronic started PROLOTHERAPY a year ago, his Clusters are gone. This therapy is injected in the neck ( Right where we ALL try to pop to relieve the neck pain/pressure ). I am Chronic, but several months a year I get hit with KIP's at 9-10 every 6-8 hrs. Every 45 minutes if I try to sleep. I decided to try PROLOtherapy, while getting hit every 6-8 hrs I had my first injection on Friday @ 10am. I had ONE Cluster at 2:15 Sunday am. ( 40hrs after shot ) I've had NO PAIN, NO SHADOWS or even a sign of the BEAST since! I had my 2nd injection at 8:30am this morning! I have NOT BEEN PAIN FREE for over 11 years. This has worked for me and HOPEFULLY others. I know we're all different, doesn't work for everyone. I know it's only been a short time, but this therapy STOPPED the BEAST dead in it's tracks. Try this therapy, it's not expensive, PAIN FREE with NO SIDE EFFECTS. Look it up and research yourself, PLEASE. I thought I would never get relief from the BEAST, at this time I feel like a NEW PERSON. PLEASE RESEARCH AND HAVE A OPEN MIND. ( If your like me, YOU WILL TRY ANYTHING TO GET RID OF THE PAIN ). :D

Bionicman, great you and your brother found treatment to help, even if as you mentioned-temporary.

You may consider being cautious with quantity of Redbull/energy drinks while on Verapamil. 

Additionally, 12 lpm-15 lpm of o2 is too low to hyperventilate!  Try 25--40 lpm with NRB mask, think you'll be impressed with the result.

Wishing you all the best!

Thank You. I'm aware of the possible problems mixing the 2. But the BEAST made me do it, I was at the end of my rope with the NONSTOP pain. If this therapy continues to help I have a lot of work ahead of me! I'm COMPLETELY out of shape, hooked on Red Bull and have been taking 30mg ( YES 30mg ) of Prednisone for over 5 years daily. My brother has been PAIN FREE for over a year, I have gone through 3 major surgeries and I believe I have tamed the BEAST.

Never heard "prolotherapy", so I looked around a bit.  Here are a couple of links.  There seem to be many more. 

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Best,

George

"The BEAST made me do it!"

-sounds like a preventable headline on a tombstone from somebody with fatal heart attack

Thanks for that.

I'll stick with my own alternative treatments.

Since this involves injecting an irritant into a joint or connective tissue to stimulate overgrowth of new tissue, how is this supposed to help CHs? Unless the irritant was lidocaine, in which case, it isn't new but an old intervention to dull the trigeminal. Who tried this on you, and for what purpose? lance

I don't know what exactly Prolotherapy consists of. I do know after 11 years of suffering and the BEAST destroying my life, It has STOPPED the BEAST dead in it's tracks! I have 4-6 attacks on a daily basis, I can't sleep more than an hour with out getting hit. I can't remember how long it's been since I could take an afternoon nap without waking up and running for the O2. Like I've said prior, it's inexpensive, pain free with no side effects and working for me.
   I'm not a Doctor, I'm a Father who watched his children grow up with me on the sidelines. We all know these H.Aches have changed our lives for the worse! I have researched and volunteered my life to find a cure or at least something to make these H.Aches live able.
   One question I've always asked, why does the PAIN start in the Neck? If and when my neck pops, the H.ache seems to decrease in pain and start to go away! 3 injections in the neck and they stop? People with arthritis suffer from pain when the weather/pressure changes. I know with the pressure, seasonal changes and weather my h.aches are the worst! Just a guess and my personal opinion, I believe the BEAST is triggered from the neck, weather causes pain in arthritis patients and Clusters are triggered from the same. All I can say is it's making life enjoyable again.

Bionicman wrote on Nov 15^th, 2011 at 10:18am:

I don't know what exactly Prolotherapy consists of. I do know after 11 years of suffering and the BEAST destroying my life, It has STOPPED the BEAST dead in it's tracks! I have 4-6 attacks on a daily basis, I can't sleep more than an hour with out getting hit. I can't remember how long it's been since I could take an afternoon nap without waking up and running for the O2. Like I've said prior, it's inexpensive, pain free with no side effects and working for me.    I'm not a Doctor, I'm a Father who watched his children grow up with me on the sidelines. We all know these H.Aches have changed our lives for the worse! I have researched and volunteered my life to find a cure or at least something to make these H.Aches live able.    One question I've always asked, why does the PAIN start in the Neck? If and when my neck pops, the H.ache seems to decrease in pain and start to go away! 3 injections in the neck and they stop? People with arthritis suffer from pain when the weather/pressure changes. I know with the pressure, seasonal changes and weather my h.aches are the worst! Just a guess and my personal opinion, I believe the BEAST is triggered from the neck, weather causes pain in arthritis patients and Clusters are triggered from the same. All I can say is it's making life enjoyable again.

  It's your hypothalamus.

            Potter

That's what the Doctors say! All I know is I didn't have any injections in my Brain and the Beast has STOPPED. Maybe the nerves in the neck trigger the pain nerves in the Brain! This may be a temporary fix, but it sure is sweet to be PAIN free now. My brother who is also Chronic has NOT had any signs of a H.ache, pain or a shadow in over a year after his therapy. If this therapy stops the PAIN with NO side effects what do you have to lose. I can answer that question real easy, NOTHING but the PAIN!

I'm really glad that you are getting some relief.   I hope that it lasts forever.

I do have to point out, however, that my pain never starts in the neck.  It always begins in my face. 

Interesting, with the research I've done most Clusters start in the Cluster of nerves in the base of the skull. Do your h.aches get worse with the Barometric pressure change? My brother and I are a walking weather machine. We both get smashed the day prior and the day after any pressure change?

My CH is going through a bit of a change right now.  I used to be a "classic episodic."  Weather can sometimes affect me but right now, my hits are mostly brought on by trying to sleep or by extreme heat. 

ETA:   And sometimes, it seems, they are brought on by nothing at all.  They just happen.

Bionicman wrote on Nov 14^th, 2011 at 5:24pm:

Under the treatment of UCLA since.  :D

Do you mind if i ask you (who is treating you there)...i was a patient there for several years

I'm not receiving the Prolotherapy at UCLA. I see Dr. Charles Flippen and Dr. Baloh for Neurology. I see Dr. Antonio De Salles for Neurosurgery at UCLA. Dr. Baloh is Head of research for Genetics and currently trying to find a BAD gene causing Clusters! The Prolotherapy therapy is being treated at Dr. Plance's office. He is a Sports Dr.

Bionicman wrote on Nov 15^th, 2011 at 10:53am:

Interesting, with the research I've done most Clusters start in the Cluster of nerves in the base of the skull. Do your h.aches get worse with the Barometric pressure change? My brother and I are a walking weather machine. We both get smashed the day prior and the day after any pressure change?

Never have pain in the neck. Not before, during or after. It starts either in my eye or temple, and increases from there. No change in pressure has affected me for the better or the worse. Both topics have been covered here from time to time, and as with all things Cluster, are different from person to person. We have also had chiropracters with us who admit they find no relief for CHs from any form of chiropracty. I don't know why this therapy is working for you, either. It seems similar to capsacin irritation of the nasal passages, or some such. If any research is done on it we would be very interested. Blessings. lance

Bionicman wrote on Nov 15^th, 2011 at 12:33pm:

I'm not receiving the Prolotherapy at UCLA. I see Dr. Charles Flippen and Dr. Baloh for Neurology. I see Dr. Antonio De Salles for Neurosurgery at UCLA. Dr. Baloh is Head of research for Genetics and currently trying to find a BAD gene causing Clusters! The Prolotherapy therapy is being treated at Dr. Plance's office. He is a Sports Dr.

i find this all very interesting :-? :-? :-?...and i thank you for your response...hope you have a life time of PFDAN.....Lenny

Quote:

have been taking 30mg ( YES 30mg ) of Prednisone for over 5 years daily.

  Please tell me that was a typo of some kind.  [smiley=eek.gif]

Also, there is a LOT of information about the causes, triggers etc. of CH on the links to the left of where your reading this now.  We have all found that an educated sufferer hurts a lot less and has a better chance of knowing when a doctor is clueless so that they can move on without wasting time, money, unnecessary pain and yrs. in the process.

Quote:

have been taking 30mg ( YES 30mg ) of Prednisone for over 5 years daily

You've been saving your nickels and dimes to have your hips replaced, right?

Brew wrote on Nov 16^th, 2011 at 1:58pm:

Quote: have been taking 30mg ( YES 30mg ) of Prednisone for over 5 years daily You've been saving your nickels and dimes to have your hips replaced, right?

Isn't it a wonder that a drug that seems so miraculous can be so devastating?  My mother took Pred for many years for Crohn's.  It was her saving grace and the end of her, all in one.

YES 30mg daily. It is the ONLY relief I found. And yes, I have moon face, swollen joints, bruise & cut myself on a piece of thread, could not wear socks and my bones hurt bad! Every time I went down to 25mg my BEAST returned with a vengeance. After 5 days after starting this therapy I'm down to 20mg with NO PAIN! I've had 2 KIP 1's H.aches since, 5 minutes on o2 and GONE! I don't know if this will HELP others, but I never thought it would work for me either. Research the therapy PLEASE. Try it, NO SIDE EFFECTS!

i took high doses of prednisone for about four weeks for a nasty reaction to the small pox vaccine.  that was bad enough.  im surprised you can still walk.