Hello everybody. I'm not real happy to introduce myself here, in this forum, but here I am. I go by Rod and am 58 years old. I've suffered from Cluster headaches for over 30 years. That in itself should tell you a little of where I've been. I thought I had outgrown these things but then just last month I was reminded of what I have endured all these years. When I first started getting Cluster Headaches computers were not in public use and I don't really know why I'm here except to say that as bad as Clusters get you can still keep going. Jokingly, my cure is just to cut my head off but then today, as I had an attack, I thought what if this pain continues after death? What a horrible thought. I couldn't stand being dead and still having this pain. So I just keep on living hoping that in a matter of time it will go away. I don't want to sound gloomy. I read of the younger people here trying different things and hope some day we all will have the remedy. So far I can't claim that fact. Anyway, I just wanted to introduce myself and say hello to everyone.
To a hopeful future,
Rod

Hi Rod - welcome to the club - such as it is!  You're still a youngster to some of us.

Lots to read around here - wonderful folks that will help you.  A ton of information - oh, did I tell ya - lots of wonderful folks!!!!!

Carol

I hope I did this right and I hope you don't mind Rod.   I have moved this topic to the "getting to know you" board in the hopes that people that check that board more often for newbies will see it.


Linda


If I didn't do it right, then y'all can laugh at me.  

You did perfect Linda. I should have looked at the forum locations better, then I would have posted here to begin with.
Yes, I have tried Oxygen many years ago. If I remember I first tried oxygen about 20 years ago then tried it again around 10 years ago. Sometimes  a substance will work at first then stop working. I'm trying Varapamil (180mg) right now but it seems to not be doing the job. There are too many medications that I have tried. At this point I'm basically just enduring the pain as best I can and hoping that this cycle ends soon. I appreciate your suggestions and am very happy to hear Oxygen is working for you. Thank you very much for your wecome and maybe I can help others in some way even if it is only with my understanding.
Rod

Rod wrote on Mar 13^th, 2009 at 10:31pm:

DESPITE that last comment Chuck....I want to thank you for adding to the 02 question for Rod.


(Rod, in case you don't know because you are new...Chuck and I have known each other for years now and we are just kidding around here)


Linda

Well, I read the post where the link led me and must say I need to try oxygen again. I don't know how oxygen can change from then to now but as you have said maybe I didn't do it right. Sounds like the key is to hyperventilate while sucking up the oxygen. Hyperventilating is not hard to do when you get a headache. I usually lift weights or do push-ups until I can't do them any longer. Just to get a few seconds relief from the pain, but you can't continually do push-ups and the weights get awful heavy after awhile. LOL.
I have another problem at the present. This doctor I've seen wants me to have more tests done, or no more prescriptions. The same tests I have had done over the last 30 years.  All my tests have come back negative. It's like going full circle just to end up right where we are today. That's a big medical expense, again, and to me not worth it just to get a precription. If I thought there was something wrong I'd pay any amount to get it fixed, but I just get Cluster Headaches. That's all. I'll figure out how to get some oxygen and give it another try. I have nothing to lose and everything to gain. Thanks.
Rod

Rod, while you've had tests done over the last 30 years, as long as your tests weren't done last year, then you should probably have them done again. A test done 15 years ago needs to be repeated. What does he want, an MRI? Cat Scan? Neurological work up? Even though you still have CH, it's better to know whats in (and not) in your head. And safer, things change over the years.

In the meantime, there are ways of dealing with the shadows, and hits without a script for something. Will he at least give you a script for O2 in the meantime? Do you have insurance available? If not, there are other ways to get O2.

What meds have you taken in the past, and how long ago has it been? Let us know. We are not doctors, but can give you some information to help you. And print off the O2 info off to the left, and take it to your doc.

Let us know, we want to help.

I really appreciate the suggestions of everyone. Honestly. Someone please tell me that they have had CH for more than 30 years. I believe I started to get these 33 years ago. I was about 25. Cat scans, MRIs, brain scans, I been to so many different doctors, specialists, I even went to a pain management place once. I guess to manage the pain. Can you do that?  Sometimes I try to concentrate on the pain or trip out on it but you all know that doesn't last very long. It's too intense. I've taken so many different meds I couldn't begin to name them all. To me it seems kind of funny that I had all these tests done, and they were many years ago and yes they were negative, then all of a sudden I now have a tumor and that's what's causing the headaches. I guess I had the headaches even before I had the tumor.
Lets say I have new tests done, and lets say there is something there. If an operation were performed do you think the headaches would go away? Or am I just going to have another pain in my wallet to go along with the one behind my eye? No one knows why we have CH and there is no cure! But there might be something that helps.
I'm sure most of the people who have found out they suffer from CH have done lots of research and testing. The Oxygen thing sounds like I should try it again but this time do it right. Medication doesn't work and I doubt if I spend more money on a bunch of tests it will end this long lived nightmare, so I'm ready to give Oxygen a shot.
I'm sorry if I sound super negative right now but I'm experiencing what you call a shadow after a big hit. Calling it a shadow is kind. Doesn't feel like a shadow but it sure beats a hit.
I Love all of you trying to help me with your knowledge and experience, and I'm sure everyone has something to share. I feel so sorry for anyone that gets the same pain that I do and I cannot comprehend someone that has it without a break.
I am going to get some Oxygen and shove it down my throat. I'll let you know the results.
Rod

Thank you Linda for the link. I have read that before, many many times. I think it may be how I found out about Cluster Headaches.
I reviewed other pages on the site and feel so bad for the people that are just starting to experience these things. What I read about the chronic sufferer, well, that just blows me away. I couldn't imagine getting these everyday for years. I have episodic CH and that is bad enough. How do you explain to someone they may have these for many years to come?
I haven't done very much to find some oxygen, maybe I deserve the pain. I'm praying that this cycle just goes away.
Rod

Rod,

sounds to me like you need a big old Texas hug.... And a big shot of O2....

My doc put me on O2 so many years ago I can't even remember and I thought it was great - gave me something to do while my meds kicked in, but when I got into the high flow rate and now into the demand valve -- well - it's just a totally different ballgame...

Last July at convention I got hit during (of all things) an O2 meeting. Chuck was sitting next to me (with his wonderful O2 set-up) and he slapped his demand valve thingy on my face and within 3 minutes I was in heaven (NO PAIN). I fell in LOVE (oh not with him, but with his O2 set up) and never left his side the whole convention. I think Linda had a similar experience. She even swore not to say anything bad about him for a whole year...     Point:  O2 has changed a LOT over the years and it's wonderful now if used properly (for most of us).

How do those of us who are chronic handle it?  One day at a time and live life to the fullest in between hits.

Another thing you might try is RED BULL at the first sign of a hit. It aborts some hits for a lot of us. Or strong coffee. Frozen peas are a staple for most of us (or heat depending on your choice). There's lots of helpful hints on this board.

Welcome to Clusterville.

Hugs BD

P.S. Congrats Linda -- on your "non" virgin status...Seems only yesterday we were learning to do "quotes"

Well, I got my O2 prescription today. I've been having some good fortune and sleeping the last few nights but last night I got hit around 4 times and this morning I got hit again and it lasted a good 4 hours. I reached the point where I thought "why am I going through this?". So I went to the ER and there was a doctor there that actually knew something about CH. I live in a small town with not many doctors but this guy is good. He gave me a shot of Imitrex which actually worked and then we talked. I told him about chatting on the website and the things I've learned. He gave me a prescription for Oxygen and Imitrex injections, in case the Oxygen doesn't do it for me. He even told me about using Welders Oxygen, cheaper and easier to get.
I have the scrip for a non rebreather mask and an E tank. I guess that's good but I read someplace about a Clustermasx. Can anyone speak about this mask? Anyway I'm kind of excited to try out the O2 and I have the Imitrex as backup if it don't work. Thanks to all those who urged me on. Wish me luck!!
Rod