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Cluster Headache Help and Support >> Getting to Know Ya >> New To Headaches- Looking For Groups http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1251826979 Message started by crisjensdad on Sep 1st, 2009 at 1:42pm |
Title: New To Headaches- Looking For Groups Post by crisjensdad on Sep 1st, 2009 at 1:42pm
I,m Dave and Cristopher and Jen's dad and have diagonosed with cluster headaches. I hid this for a long time from everyone until I couldn't hide it anymore then I was scared to find out what it was- now I'm just scared to go to bed! The worst part was my kids seeing me on the floor crying and screaming and I was taken out of the house in an ambulance on Cris's Birthday- second worst day of my life! Now I have this to be a lonely place to be so I guees I'm looking for groups or people in upstate New York or I would like to see a large group just somebody that understands- don't get me wrong my family and kids have been great- but they don't really understand- HELL I don't understand! Anyway I'm not really fluent on computers and it took awhile to get the courage to do this and I'm really glad you are here. Just wanted to see what's out there for new scared clusterheads!
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Title: Re: New To Headaches- Looking For Groups Post by crisjensdad on Sep 1st, 2009 at 2:48pm
Thanks for the info on the books which I have one of them I guess what I am really getting at is I have been loaded with info but I need to understand the disease and people to talk to. I have had day's of real depression and lots of questions and no one to talk to that knows about this- I have lot's of people telling me what I can't do anymore but no one that just understands and it's a lonely place!
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Title: Re: New To Headaches- Looking For Groups Post by Joni on Sep 1st, 2009 at 2:51pm
Welcome Dave! I am new as well. You will find relief in knowing there are people who do understand. It is a great site. You're right, it can be scary when you hurt that badly! It is comforting to know that others do and live through it just fine. Bob Johnson is a good source for information...Thanks, Bob.
Joni :) |
Title: Re: New To Headaches- Looking For Groups Post by lorac on Sep 2nd, 2009 at 8:56am crisjensdad wrote on Sep 1st, 2009 at 2:48pm:
Ya....read everything that bob sends your way, he is the greatest! And just hang out here for a while ...the camaraderie gives ya the best piece of mind too. The info here is priceless. lorac |
Title: Re: New To Headaches- Looking For Groups Post by MJ on Sep 2nd, 2009 at 10:32am
Wecome home Dave.
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Title: Re: New To Headaches- Looking For Groups Post by Lefty on Sep 3rd, 2009 at 1:04pm Quote:
Us, my friend, look no further...! Welcome Christopher and Jen's dad. Maybe you can tell us a little more about what meds you are currently on. I know longer fear this crap as I now have the proper meds and a group of friends that totally understand what I am going through. Lefty..! |
Title: Re: New To Headaches- Looking For Groups Post by crisjensdad on Sep 3rd, 2009 at 2:39pm
Well first let me say that you guys have given me hope that I can be normal if you can call it that- the docs here didn't help too much. First I sat in the er for 3 hours beeting my head on the bed or any where I could find and wore a hole in the floor before someone would even talk to me but I did hear one Rn say he has a headache- I can't repeat what I said but I know you guys know! I am now on Gabapentin 300mg 7 a day and next week I start 8 a day. I have O2 at home, I have Zomig nasal for bad hits, Oxycodone,Hydrocodone and Melatonin- which by the way are great for wonderful dreams!! This for me is hard too because before this I would'nt take aspirin or any drugs without a fight. Now I just try to make sure I take the right pill at the right time. It took alot for me to take the Zomig nasal shot- just ask my wife who was begging and pleading for me to take it for about an hour! I guees one of the worst things once you get past the pain is letting my kids and family see me like this! For me I guess I just don't know whats next or where from here, but when I found you guys I felt alot better cause I started to think I was going crazy on my own. I have heard at least a thousand times that I have headaches SOMETIMES too- I tell them I have them everyday at 2:00 4:00 7:00 10:00 AM & PM some last from one to the next. At my lowest I got 1 hour of sleep at a time if I was having a good day- while going to work everyday and hiding it. The first day of work I missed was when I went to the hospital and I was on a 14 hour size 8-10 hit non stop! I would anything not to have let my kids see what they saw that day- but they have been with me and helping me everyday along with my wife who I don't know how she can deal with it! Anyway I truly THANK GOD for all of you being here and wish there where more groups and face to face meetings for all! I don't know what I'd do without all of you and the info THANKS!!!!!
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Title: Re: New To Headaches- Looking For Groups Post by MJ on Sep 4th, 2009 at 12:58am
"Oxycodone,Hydrocodone"
These two drugs are not the answer for CH. Initially one thinks they help but the reality is they can cause an increased level and frequency of pain and stretch out the cycles not to mention the addiction potential. Not many find lasting success with them, many have gotten quite strung out though especially with the oxy. |
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