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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Dumbfounded
        
(Message started by: djpaynesr on Feb 8^th, 2006, 6:32pm)

Title: Dumbfounded
Post by djpaynesr on Feb 8^th, 2006, 6:32pm

Hi Everyone,

My name is Dave.

I'm almost speechless. Give me a minute, the gears will kick in.

Where do I begin?

I can't believe this place has existed for so long and I've only now found it. I'm 35 and I've been suffering from CH since 1991. Like most of you I went un/misdiagnosed for years suffering almost every time I went to sleep.

From 2003 to 2005 was my longest break. Then they came back with a vengeance and have been back ever since. I shoot up with DHE at least twice per day, have a large O2 tank in my basement and supplement with Trex when my Insurance company will fill my prescription. I have taken to dispensing the Trex into the injection bottles that the DHE comes in and only using half (I use syringes similar to diabetic ones for the DHE so injecting it from there isn't a problem). BTW, I don't think for a second that the FDA approving the 4Mg injections is going to increase our access one iota.

I have one lovely wife that has seen me at my worst and not called the people with the funny white jacket. I have managed to spare my two children (son, DJ, 5 and Daughter, Ryan, 2) from seeing me in a full-blown CH so far.

After reading the wonderful research on this site I have made an appointment with my neurologist and will beg to be put on Lithium. Apparently none of the other medication, Verapamil, etc. does anything for chronic CH. Thank you so much for that.

Oh, I live in Maryland, just outside of Washington, DC.

I have two cats and a guinea pig.

I'm sooo looking forward to getting to know everyone. Thanks for creating this community and giving us a place to commiserate and support one another. :)

Dave

Title: Re: Dumbfounded
Post by Guiseppi on Feb 8^th, 2006, 6:42pm

This place is heaven on earth isn't it! Lithium has worked great for me, I'm episodic. I'm a 45 year old male, I weigh about 200 pounds and take 1200 mg of lithium a day when I'm on cycle. Like you I use the oxygen but I back it up with oral cafergot or as soon as I stop the oxygen the bugger comes back.

Welcome to the nut house, you'll find some great people here.

Guiseppi

Title: Re: Dumbfounded
Post by MJ on Feb 8^th, 2006, 6:43pm

Welcome aboard Dave.

Glad you could make it home to CH.com.

Title: Re: Dumbfounded
Post by MJ on Feb 8^th, 2006, 6:48pm

on 02/08/06 at 18:32:59, djpaynesr wrote:

I have two cats and a guinea pig. :)

Dave

Cool ;;D

Title: Re: Dumbfounded
Post by Jonny on Feb 8^th, 2006, 6:57pm

Welcome home and to the family, Dave!

This place was started in 1998 by a dude named DJ, he was sick of not finding any CH sites on the internet.

We meet once a year for a convention, check the buttons on the left for convention pictures.

Sorry you have to be here man, but theres no better place to be if you have CH!!!

Now grab an oar and start rowing (Thats what we call supporting ;) )

Title: Re: Dumbfounded
Post by E-Double on Feb 8^th, 2006, 7:13pm

Hello new friend!

You may not have been taken to the funny farm but you sure as hell found it by logging on here. ;)

Welcome aboard and you will soon find out that there is no other place like this for knowledge and support regarding our condition.

Read as much as you can and share with all.

Be well and here 4 ya day and night!

Eric

Title: Re: Dumbfounded
Post by djpaynesr on Feb 8^th, 2006, 8:35pm

Thank you so much:) It's really going to be nice to share war stories and talk to people that truly understand the pain of these horrible things.

Title: Hi Dave and welcome!
Post by Richr8 on Feb 8^th, 2006, 9:11pm

Sorry you had to find this place, but glad that you did. I have been a sufferer since 92 myself (Episodic) and also just recently found this place. It sounds like you have your meds and O2 lined up, so you are probably hooked up with a good Neuro and plenty of good experience and advice. This site is a fabulous resource with many helpful folks and best yet, it's always open for learning, sharing, or just venting.

Looking forward to hearing more from you and wishing you many pf times.

Rich

Title: Re: Dumbfounded
Post by marlinsfan on Feb 8^th, 2006, 9:51pm

Welcome to the nuthouse, DJ. Good bunch of people here, and nobody here will think yer nuts.

Title: Re: Dumbfounded
Post by Dragnlance on Feb 8^th, 2006, 10:46pm

Hi Dave!
Sorry to hear you carry a monster in your skull too. We can hope one day we can declaw the bastard!

Welcome home man
Dragnlance

Title: Re: Dumbfounded
Post by burnt-toast on Feb 9^th, 2006, 7:54am

Welcome aboard Dave.

You found us - stick around because there's a lot of information and support here.

Regarding meds. for chronics - combos can be effective for treatment. It will take some work so I always recommend keeping an accurate headache journal to track efforts at finding the most effective treatments.

I started with Lithium Carbonate but when it lost its effectiveness experimented/tracked Caffergot, Verapamil, Melatonin and Steriod injections and Prednesone and several alternative cures.

Combo of 1200mg Lithium Carbonate, 720mg Verapamil and 9mg Melatonin 30-45 minutes before bed have become my base meds. Finding/maintaining the best schedule for taking these meds. was important as well. I found that if I missed my schedule by more that 1-1.5 hours I was in trouble. Here are some good prescription drug information links that will help you make some decisions - talking with your pharmacist is also a great source of info.

http://www.drugs.com

http://www.nlm.nih.gov/medlineplus/druginformation.html

Everyone seems different so finding the right solutions will take some work.

Best Wishes on your journey.

Tom

Title: Re: Dumbfounded
Post by djpaynesr on Feb 9^th, 2006, 8:34am

Thank you so much for the information.

I just learned about Melatonin and have been taking it reglularly before bed. It seems to get me through the night but I wake up about 5-6:30 (about time to go to work wouldn't you know) with the Beast raging. I was getting upset at first because for me it seems to be more tolerable to get up, deal with it, and then have a few more hours of sleep. But then it occured to me that I was getting what should be considered a full nights sleep (7 hours or so) and I remembered what it has been like to wake up 2 or 3 times a night. I cheered up considerable after that. :)

I have another appointment with my Neuro on the 23rd and will grill him on the best course of treatment for a Chronic sufferer. I think I'm going to go with the Lithium and and Ergot of some sort.

DHE and Trex work the best for as an abortive but the DHE STINGS LIKE HELL most of the time while the Trex is relatively painless.

I hate to keep running on at the hands like this but I've had all of this bottled up for so darn long. Your supporters can only understand so much. It's such a relief to have a place to go where everyone understands.

Title: Re: Dumbfounded
Post by E-Double on Feb 9^th, 2006, 9:03am

I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"

on 07/09/05 at 06:25:52, E-Double wrote:

Hi all,

I was having a period of which I was not responsive to O2 nor triptans. Dr. Sheftell consulted with Dr. Rozen and perscribed Zyprexa in attempt to abort my CH.....

I was using it when O2 & trex didnt work so really didnt know if it was that, that helped or just ended (poor testing I know)

Like many, I hate the nastiness of the triptan hangover and try my hardest not to use them as a general rule...

decided to take zyprexa alone to abort. WOW!!!!! and as fast as trex or O2 worked for me in the past.

I split a 5mg pill (2.5 for you math majors) popped it and literally less than 10 minutes I felt FINE = PF!!
I have never had the CH completely leave, I always have some lingering, never completely PF.

The other difference ws no triptan hangover. I was a bit in a zone for about 5 minutes. I felt like I was just stairing into space but then fine!

It seems worth it to me!

1: Headache 2001 Sep;41(8):813-6

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
=======================================================
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=======================================================

Your not taking the DHE and imitrex within 24 hrs of eachother I hope?

E

Title: Re: Dumbfounded
Post by llreed on Feb 10^th, 2006, 1:02pm

Welcome aboard Dave,
Wish you more pain free days.. This place has been my life boat and I have made some really cool friends and alot of support and quidence. Check out the Friday chats - if you need a smile.
PF Wishes,
llreed
:P

Title: Re: Dumbfounded
Post by djpaynesr on Feb 15^th, 2006, 2:08pm

In regards to the DHE and Trex: It's worse than that.

I've mixed them. For awhile in September of last year I would get 2 or 3 CHs every night and another 2 per day. I was travelling so I didn't have access to my O2 which is what I normally use when I use DHE while I wait for it to kick in.

I found that the DHE worked and had a halflife for about 8 hours but it took 35-45 minutes and frequently up to an hour to work. On the other hand the Trex worked almost immediately (7 min) but only had a halflife of about 2 hours.

I was at my wits end and in a very, very dark place. So, in desperation and probably through pain clouded judgement, I reasoned that if I mixed 2.5mg Trex and 1/2 mg DHE I should be reasonably safe, get almost immediate relief with a PF period of up to 8 hours.

It worked. No side effects that I remember.

I WOULD NOT RECOMMEND THIS TO ANYONE . You're right, mixing these could KILL YOU. However, after weeks of this agony and 15 years of dealing with these I was beaten mentally, emotionally and physically.

Shortly afterwards I stopped travelling and was able to use my O2 for immediate relief and DHE injections for prolonged relief so I haven't done that again.

Title: Re: Dumbfounded
Post by Jasmyn on Feb 17^th, 2006, 4:06am

Welcome to the family Dave!

Title: Re: Dumbfounded
Post by kcopelin on Feb 18^th, 2006, 10:48am

Dave
Just want to add my welcome! You are indeed home. Just a word about clusterheads...we are a very strong bunch of people and the fellowship of this community is a major reason I have been able to hang in there. I'm very thankful that you didn't hurt yourself with the DHE/Trex mixture.
Kathy

Title: Re: Dumbfounded
Post by kissmyglass on Feb 19^th, 2006, 7:47pm

on 02/15/06 at 14:08:56, djpaynesr wrote:

In regards to the DHE and Trex: It's worse than that.

I've mixed them.

Glad you are still with us Dave. Lithium has bee a lifesaver for me. Works best when used in combination with Verapamil.
Glad you found us...

Kev

Title: Re: Dumbfounded
Post by Beastfodder on Feb 23^rd, 2006, 7:09am

Dave Welcome,

Managing CH is a lot easier with this site.

Mind you you were a tad harsh on verapamil - apparently it's showing great promise as a male contraceptive!

Also have you got a non-rebreather mask for the O2 ? (www.clustermasx.com if not).

Last point being that Dr Andrew Sewell's doing some really interesting research on alternative therapy's for CH (see www.clusterbusters.com) that some of us gain great relief from.

Very best wishes

Title: Re: Dumbfounded
Post by RichardN on Feb 23^rd, 2006, 8:58pm

Ditto all the above and welcome to Clusterville. This place saved my life and gave much of it back.

Thanks again DJ.

Be Safe, PFDANs

Richard

Title: Re: Dumbfounded
Post by echo on Feb 24^th, 2006, 10:25am

Welcome to clusterville Dave. Sorry you needed to look for us, glad you found us.

Title: Re: Dumbfounded
Post by Barry_T_Coles on Mar 2^nd, 2006, 9:35pm

Welcome to the Global CH family Dave.

Kind Regards
Barry

Title: Re: Dumbfounded
Post by pfunk on Mar 3^rd, 2006, 3:48pm

Welocme aboard, my friend. Sorry to hear of your pain but your in the right place, whether you're looking to get support or give it. You can do it here. Together we fight a daily battle with this beast and I have to say that I would have lost the war had I not found this place. Stick around, read up, get to know everyone. Who knows, you may even find some time for laughter while on here(i know I do just about every night). And during the trying times we have with this monster, it's amazing how much the laughter really does help. Wjether laughing or not CH.com has brought a smile back into my life that I thought was gone forever. Hoping relief finds you soon,my friend.

Pfunk