Hello all

I'm Dan and I've been dealing with cluster headaches for getting close to 5 years. Although I've been keeping an eye on this forum for quite some time this is my first post. Prior to even posting my first message I attended the most recent convention in Atlanta. For the first time in 5 years I knew i was talking (mostly listening) to people that knew first-hand and understood exactly what I have been going through. These people all amazed me! I felt lost for words for 2 straight days and I have to admit I was overwhelmed by all the caring and understanding everyone seemed to genuinely express. Although I've explained myself to friends and family and some have even seen me have bad attacks it's not the same as being around people who have to deal with the same pain.

Since the convention I'm trying to find a new neurologist as the one I have been seeing seems to have lost interest and all she seems to do is pump more and more drugs into my system without any concern over what they may be doing to my system (verapamil 3 years, currently 720mg a day - helps but seems to have made me chronic as I dont seem to get any breaks, lithium (short time - didnt work), topamax (short time - seemed to be working but was HORRIBLE experience and I chose to stop taking it without any instruction from my doc as she wouldnt return my calls), prednisone (when switching between drugs - doesnt seem to do anything), occipital nerve blocks (numb head but still had attacks), some sort of IV treatment (nada), and a whole TON of imitrex injections (the only thing that I use to abort attacks and it works but im so sick of sticking myself) - nasal sprays kind of work but take too long to kick-in. Never used oxygen although I've recommended this to my doc in the past. After going to ATL and seeing that everyone uses it I will be requesting it from my new neurologist once I can get in to see her.

I wont be missing another convention no matter where it is being held. Although it was overwhelming and at times discouraging I am so happy that I was able to attend. You clusterheads are all wonderful people and I hope to stay in touch through here until I see you at the next gathering.

Thank you all!!!!!!!!

Dan

Welcome Dan!!

Glad you finally posted. Stick around.....we generally aren't hard to get along with.

It was great to meet you, and it'll be even greater getting to know you. Welcome home.

Yes, welcome. I'm sure you now know the best procedures for O2 use, but docs and O2 suppliers do not. Be aware that you may need to push for a high flow regulator and non-rebreather mask since their first reaction will be to treat you as a respiratory patient. Be sure you push your doctor for the right prescription from the start. God bless! lance

Racer1_NC wrote on Jul 25^th, 2010 at 9:44pm:

Welcome Dan!! Glad you finally posted. Stick around.....we generally aren't hard to get along with.

Speak for yourself Bill  ;).

Glad to see you posting Dan.  It was a pleasure to meet you in Atlanta.  I hope that Manjit can help you get a new neuro.  If you can't get one fast enough, there are several canadians on the board who will be glad to help you with anything you need.

Carolyn~aka~deltadarlin

Hi Dan!  Welcome home - home being your home in Montreal, and also to you new home here with your newly extended family.

It was great to meet you in Atlanta and I'm glad you were able to get good concrete information from the speakers.  I hope your new neuro proves to be a really good one.

Keep us posted on how you are doing.

Sandy

Dan, I've been checking daily for you to show up and so glad you did.

Check you PMs please.

Linda

Dan, it was a real pleasure to meet you. I've been watching for you to post. Hope the new Neuro has a clue.

Don

Hi Dan and Welcome!  Glad you posted finally, no more lurkin for you! 

Hope all goes well with the new neuro!

PF wishes to you!  8-)

Thanks everyone (again)!

Seeing how fast everyone responds once again is so shocking!

After a few weeks of trying to get in to see my neuro (soon to be ex-neuro) and being unable to get ahold of her I walked into the hospital today. I need a referral in order to see the new neuro and I also planned on getting a prescription for oxygen from her. Medigas needs a prescription in order to get me oxygen within 24 hours. So once again the receptionist was unhelpful and rude. She told me to go to ER which I did the other night when my legs and feet swelled up (a whole other story but has to do with the meds). The receptionist claims that my neuro is on vacation until September. I said "what am i suppose to do till then? can i talk/see another neuro? Nope, I need a referral. No help from her at all besides a very aggresive and rude attitude. So i went to a walk in clinic hoping some random doc could give me the prescription for oxygen and a referral for a neuro at the same time. Once again denied for oxygen but he did give me a referral for a neuro. So tomorrow I will be sending my entire file along with the referral and request for oxygen to the new neuro (previously had the receptionist photocopy my whole file when i planned on seeing someone at the Mayo Clinic in MN - changed my mind after meeting and learning at the ATL convention. I think i can do most of this in Canada without spending an arm and a leg :).

So we'll see what tomorrow brings! In the meantime trying to stay positive.

Linda, thank you for the PM. I'll keep an eye on here! Hope you are doing well!

Brew, Go Brewers - Weeks is tearing it up. Hoping for a strong second half.

Beeyul, so glad to hear from you!

Don, you are my hero! I didnt have a chance to say bye to your lovely and supportive wife but please send her a HELLO from Dan in Canada.

I wish i could thank everyone personally right now! I hope I hear from a few others I was able to meet down south and can stay in touch until the next convention.

Until my THIRD post,

Dan

You da man, Dan. Something tells me you'll be getting exactly what you need and soon - because you won't take no for an answer.

P.S. - Weeks got nailed in the side of the head with a fastball the other night against Washington, and that tough-a$$ed m***** f***** stayed in the game AND SCORED LATER IN THE INNING!

I like your attitude Dan, I'm with Brew, you'll do just fine!

Joe

Hey Dan - welcome from a fellow Canadian - just a few hundred miles west of you on the 401!!!!!!

So glad you had a chance to go to Convention - bet you never thought you could meet so many others that are just like  you and you didn't have to make any explanations.  (shhh - some of them think we talk funny - but don't let that worry you - they're actually pretty nice folk anyway! ;-) )

Carol

Grandma_Sweet_Boy wrote on Jul 26^th, 2010 at 8:50pm:

(shhh - some of them think we talk funny)

No way, eh? Take off.

Brew wrote on Jul 26^th, 2010 at 9:57pm:

Grandma_Sweet_Boy wrote on Jul 26th, 2010 at 8:50pm: (shhh - some of them think we talk funny) No way, eh? Take off.

Good thang yer cute!!!!  :D

Dan, you remind me of myself when I was your age. Go get 'em. I'm attaching a link about CH, you may be able to use the O2 section with the Dr.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Don

Dan...it was good meeting you in Atlanta. Meeting the new peeps always makes it special.

Keep us posted on how it turns out. If we can be of help, let us know.

Hi Dan, nice to meet you. Sorry you are a sufferer of CH's, but as you have already met some of the nicest people on this planet at the LA Convention you are not alone with these anymore.
Medical o2 is available with a script in Canada as I am proof of that, and I even took it one step further and got me a script for the higher 25 LPM regulator!! Took some work but I was successful! Good luck with your new neuro.
  Barry :)