My wife and I wanted to thank all you wonderful folks who welcomed me to this new family.  Here is a rundown of my treatment so far. what I am on now is Butol caff tab and oxycodone. The meds that have failed to work on me so far are Indomethacin - due to adverse reaction, Topiramate- adverse effect and steroid pack 6 day treatment. I have also tried Ergotomine which works but can't be taken for more than a few attacks. My neurologist is going to be putting me on something new tomorrow. As all of you know better than me I hope its going to be the one :)   Again thank you so much for a great welcome. 

Tom S

Hey Tom,

I never heard of some of the drugs you metion other than the roids. I cant see how the oxy would work, I can see a good buzz from the oxy, and god knows we all could use one of those after a cluster.

Talk to the doc about 02. Works for me in less than 5 minutes. That way i could enjoy the oxy.

Wellness to you my friend, Coach Bill

And keep track of the meds you've tried and what does and doesn't work. Cafergot didn't work the first time I tried it....but combined with oxygen for a 1-2 punch it was my life saver for many years.

Careful with Butalbitol...aka fiorinal....one of the few narcotic meds that was somewhat effective for me...but has a very high risk for addiction. Same with the Oxycontin.

Please read the oxygen info tab on the left. 31 years of CH and nothing has compared with the speed of the abort and the lack of side effects. And on top of that it's cheap!

Joe

Tom, I am surprised your neuro has you on opiates.
Not many of us here get any relief from those drugs other than what others said, a good "buzz".
As Joe said, use with caution.  If your neuro has experience with cluster headache, he should be aware of oxygen use.  It's the most natural way to abort a hit.

Best of luck!

Chad

Dear Tom,

I agree with the other posts here. It sounds to me that your neuro is not barking up the tree that others of us have barked up first before visiting the opium den....

Abortives: O2, Imitrex Injections, Energy drinks (taurine/caffeine combo)

Transitional: Prednisone Taper (steroids)

Preventatives: Verapamil (fast-acting versus sustained release), Topamax, Lithium. There are others for phase 2 if these dont work that you can read about on these pages, but many of us find that either of these three are effective one way or the other, at least to start with. Note that all of them require several weeks or more to take full effect.

I recommend that you discuss the above with your neuro first before experimenting with potentially addictive substances that may prove less successful with the core ailment, while adding another problem.

Hi everyone,

Sorry for any confusion, the oxycodone and butal are treatments for the pain level until a med can be found that I can tolerate.  It's tough for the doctor because I have a blood disorder known as ET syndrome.  Simply put I have an extremely high platelet count which can possibly cause a serious interaction with other meds.  I cannot takes meds such as Imitrex and those in the same catergory so I am what you might call a difficult patient for the doctor.  There's other medical issues also that are being dealt with right now.  Thanks so much for your feedback and concern.  I certainly have a long road to travel.   Tom S.

Is there a reason you seem to be ignoring the advice about O2 (oxygen)? Used only to abort an attack it can give you more of your life back than any med you will find.

Good Luck, Don

Right there with Skyhawk. Oxygen gave me my life back this past go round with ZERO side effects.

tom s wrote on Mar 25^th, 2010 at 1:09pm:

Hi   I cannot takes meds such as Imitrex and those in the same catergory so I am what you might call a difficult patient for the doctor.

...then try Oxygen, that is one solution ANYBODY can do minus the drugs.

Tom,

No messing around now, Oxygen is the way.

Ever since i got it over 2 years ago, i

have not had a cluster last longer than 5 minutes!!!

Wellness...  Coach Bill

I am Terry, Tom's wife.  I'm glad I looked at the message board before Tom did.  I will clarify the oxygen questions.   Last week was the first time Tom met with a neurologist.  Everything tried before last Monday was done through his primary care doctor who would Not give him a perscription for oxygen because she was sure it would not work.  The insurance kicked in just 2 weeks ago.  Neither of us knew about the welders supply houses that sell oxygen.  He was not ignoring anyones advice.  He had only been on the sight for two days at the time of the second post.

I have always told our children that it's not "what you say but how you say it" and treat people the way you want to be treated.  I thought when I found this sight that Tom had a place to go to get through some of the hard times that go with ch, and for the most part people have been nice to him, but the way some people addressed him was harsh and unexpected.  He was asked what regimen he was on and the meds he has tried and that is exactly what he answered.  I never thought my first post on this site would end up this long but I couldn't let this matter go unaddressed. 

Terry & Tom - you are right about  "it's not what you say vs. how you say it".

I reached out to welcome Tom on the thread to his first post "...from cape cod". My husband and I are local (Stoughton) and new to this (1+ year). Just want to let you know that all really do mean well here on this site...some w/ tough love and some just there for you if you need them. There is so much I learn everytime I visit. Keep reading...everyones words are all here to learn from and and to gain support and between the lines you might find a kick in the teeth or a warm hug....everyone is in it together. Would love to chat more and compare notes. Hang in there,
diane

And remember............the biggest problem with web sites is you can't see the face behind the post. So what is said with a little loving sarcasm and a smile comes accross as brutally harsh under the florescent lighting of a web site.

PLEASE PLEASE don't leave this site. There is no more comprehensive collection of knowledge to be found anywhere.

Wishing you peace and some pain free time.

Joe

tom s wrote on Mar 27^th, 2010 at 11:09pm:

I thought when I found this sight that Tom had a place to go to get through some of the hard times that go with ch, and for the most part people have been nice to him, but the way some people addressed him was harsh and unexpected.

Welcome Terry and bless you heart as a supporter.  People like you are gold.

Now, you must understand that MOST of us got this same kind of welcome.  You must understand you're talking to people who have managed their pain for a long time and I would take their advice over a doctors in some instances.   When we see drugs in the opiate family being used, we are always skeptical.  Once Tom gets with a good neuro or pain management specialists, he should be set then.  I did not know his general practitioner was the one prescribing those drugs.  That explains everything.  Oxygen is the #1 abortive on this site.
If you need help  finding it, just ask.  My insurance doesn't cover it, but the $36 out of pocket is well worth it.  I am sorry this thread has made you feel this way.  Please, lets start over and stick around, it's well worth it.

Have a great Holiday!

Chad

Hello Tom & Terry,

I have also meet skeptical remarks.  I have not been properly diagonsed by a neuro... I live in Alaska on an isolated island, and flying during clusters is the last thing on my mind.  My dr. started treating me for clusters, and whamo.. I finally got relief.  So I am kinda not "bone-ified" if you know what I mean. 

It's been 18 yrs since my first CH.  Only 5 yrs ago, I was treated for clusters, and at first they tried opiates on me too.  It didn't help me, It only made the pain more focused.  I flat out refused them after that.

I took the advice from others on this site to use O2 and never looked back.  What a miracle!! I don't have a rx for it either, I purchase a tank from a welding shop and the hospital gives me disposable non-rebreather maskes.  My husband bought a regulator on line. 

There is a bit of tough love here, we all are in pain, we all understand better than anyone anywhere how to advise to manage it.  There are soooo many remedies that work, some don't, some one cycle, and some not the next.

Please don't leave us.  If you don't post or comment, at least read and read and read.  You are bound to find something very very interesting.

My thoughts go out to you, wish you many pain free day's and nights,
angela

I'm sorry, maybe my question was too direct. Knowing if there is a personal or Dr probelm with O2 can give us info to help you. Your Dr obviously has a lack of knowledge about O2 use for CH.

Many times the patient has fears about O2. O2 is not a bomb, it is not explosive and is the best and safest treatment to abort CH I know of. Meds all have side effects O2 doesn't.

We are all here to help and we all suffer from CH one way or another, in fact I am suffering now too. Last night I had 8 CH attacks, all of them stopped with O2.

Don