amon10

Absolutely no apologies needed. Thanks for all your hard work keeping things going. With my tech skills I just thought I screwed my device up and it was going to be a while before I fumbled my way back here. lol

As a fellow episodic I wouldn’t put too much into your sleep schedule starting your cycle. I work swing shift all the time and the only thing certain for me is when I’m in cycle 80-90% of my attacks are coming during sleep.

Good advice CHF, the verapamil's effectiveness will be lowered. Sometimes it's a balance you won't lower the D3's effective but I have found when I get my blood levels where they need to be I have relied less on the verapamil.

Episodic and have stayed on the D3 on maintenance dose based off my blood levels. Absolutely convinced it has also helped with my years of joint pain and arthritis. I have been able to reduce my intake of OTC anti inflammatory medication by 80-90%.

Any doctor you can't have a conversation with in my opinion would gone. A doctor that dictates medical treatment without feedback from the patient, does not deserve patients.

Not looking for a share but just heads up, another room should be available. Unfortunately had to cancel yesterday, feeling bummed.

Also there is a good Facebook group that has several people from Wisconsin and also a link for map to fellow suffers. Clusterheadaches is the best group on Facebook some of the other ones are kinda of controlling and limit topics. Let me know if you are on Facebook and want me to send you an invite.

Fellow Wisconsin suffer here. Out of cycle right now, but know what you mean by CH effecting all parts of your life. Also agree with DD about the conference this year. Another member here has been suggesting it to me and my wife for a few years already and after meeting some fellow suffers in person last year we are heading to the conference this year. There is something truly validating about meeting fellow CHers in person, wish I would not have waited 25 years to do it.

I agree with CHF, trying adding the D3. It will make them O2 aborts even more effective.

As far as welding oxygen goes it's pretty straight forward. Purchase your own tank or rent from a welding supply company. The oxygen is produced in the same manner. When you purchase the oxygen you will need a "story", they won't knowingly sell you it for medical reasons. More liability reasons than anything. Tell them a buddy is teaching you welding, or glass blowing. You don't need any other equipment, just extra 02. Buy a regulator online or one at a tool supply store. Need one with a CGA 540 style regulator to fit a welding oxygen tank. Then purchase a non rebreather mask. This is a good one: http://www.clusterheadaches.com/ccp8/ Then check back and someone gave you best practices on how to use it. If your doctor can't give you a valid reason(respiratory conditions) for not using oxygen you should be fine.

Hope you guys can meet up. I waited 25 years before I meet fellow sufferers in person....wish I never waited so long.

Have had dogs and cats most of my life. Dogs have always stayed away until right when attack is over and then come out to comfort, they just seem to know. Just said good bye to my cat a few months ago, I should probably get another. She was a tough cookie, would never run off and stay near, but not too close. She would always seem very composed even when I was hitting my worse. I know you could train dogs for just about anything but for CH I think it would take many years and not sure if it would be a benefit.

I agree with what CHf said, also not everyone has a set pattern to when they get attacks. Mine can change their pattern just by my daily schedule changing. Start logging your attacks, pain level, meds, and possible triggers. If a medicine is not working discuss with doctor and get off it. I spent too much time taking useless meds. Good luck to you.

And we all hope you find some definite answers with pain relief.

GoldEnBars thanks for sharing your story, sorry you share the experiences of many of us. First off on the supplements you didn't say how much you were taking? Look into this: http://www.vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people+ By a member here(Batch) that really knows what he's talking about. I stay on it at lower doses even when not in cycle and has helped with other inflammation issues. I also add turmeric curcumin(500 mg daily) to mine. Get your regular doctor to prescribe high flow oxygen to you why you wait for neurologist appointment. If he says no, ask why? It is safe and effective, so unless you have some type of respiratory condition call b.s. on him and get your own. Yes your neurologist might just try to prescribe more medication to you, but it is still a good idea to see them just to rule out other possible health concerns. You also might luck out and get one that knows what he is talking about and/or is open minded. If you haven't started already, start a log so you have information to share with them and if something is not working for you.