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Topic: Dumbfounded (Read 540 times) |
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djpaynesr
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Hang in there :)
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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
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We can survive this
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Guiseppi
CH.com Alumnus
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Re: Dumbfounded
« Reply #1 on: Feb 8th, 2006, 6:42pm » |
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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
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Why are all sensors, seeking intelligent life, pointed AWAY from earth?
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MJ
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Re: Dumbfounded
« Reply #2 on: Feb 8th, 2006, 6:43pm » |
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Welcome aboard Dave.
Glad you could make it home to CH.com.
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| « Last Edit: Feb 8th, 2006, 6:44pm by MJ » |
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MJ
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MJ
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Re: Dumbfounded
« Reply #3 on: Feb 8th, 2006, 6:48pm » |
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on Feb 8th, 2006, 6:32pm, djpaynesr wrote:
I have two cats and a guinea pig.
Dave |
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Cool 
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MJ
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Jonny
CH.com Alumnus
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Give me a shovel Ill dig my own grave!
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Re: Dumbfounded
« Reply #4 on: Feb 8th, 2006, 6:57pm » |
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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  )
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
  
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Re: Dumbfounded
« Reply #5 on: Feb 8th, 2006, 7:13pm » |
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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
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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djpaynesr
New Board Newbie
Hang in there :)
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Re: Dumbfounded
« Reply #6 on: Feb 8th, 2006, 8:35pm » |
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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.
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We can survive this
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Richr8
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It's all about today...
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Hi Dave and welcome!
« Reply #7 on: Feb 8th, 2006, 9:11pm » |
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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
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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marlinsfan
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I love this place!
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Re: Dumbfounded
« Reply #8 on: Feb 8th, 2006, 9:51pm » |
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Welcome to the nuthouse, DJ. Good bunch of people here, and nobody here will think yer nuts.
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Dragnlance
New Board Hall of Famer
Monster bait
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Re: Dumbfounded
« Reply #9 on: Feb 8th, 2006, 10:46pm » |
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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
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burnt-toast
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Re: Dumbfounded
« Reply #10 on: Feb 9th, 2006, 7:54am » |
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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
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space.
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djpaynesr
New Board Newbie
Hang in there :)
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Re: Dumbfounded
« Reply #11 on: Feb 9th, 2006, 8:34am » |
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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.
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We can survive this
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E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
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Re: Dumbfounded
« Reply #12 on: Feb 9th, 2006, 9:03am » |
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I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"
on Jul 9th, 2005, 6:25am, 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( :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.
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Your not taking the DHE and imitrex within 24 hrs of eachother I hope?
E
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| « Last Edit: Feb 9th, 2006, 9:05am by E-Double » |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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llreed
New Board Junior
I love YaBB 1G - SP1!
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Re: Dumbfounded
« Reply #13 on: Feb 10th, 2006, 1:02pm » |
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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
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djpaynesr
New Board Newbie
Hang in there :)
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Re: Dumbfounded
« Reply #14 on: Feb 15th, 2006, 2:08pm » |
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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.
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We can survive this
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Jasmyn
CH.com Alumnus
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Each day will be a new trick in life's journey
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Re: Dumbfounded
« Reply #15 on: Feb 17th, 2006, 4:06am » |
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Welcome to the family Dave!
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Jazz
Madness is proclaimed by society’s inability to accept its own infallibility
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kcopelin
CH.com Alumnus
New Board Hall of Famer
good grief
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Re: Dumbfounded
« Reply #16 on: Feb 18th, 2006, 10:48am » |
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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
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Words count, chose carefully.
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kissmyglass
CH.com Alumnus
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Don't Mix Triptans
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Re: Dumbfounded
« Reply #17 on: Feb 19th, 2006, 7:47pm » |
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on Feb 15th, 2006, 2:08pm, djpaynesr wrote:In regards to the DHE and Trex: It's worse than that.
I've mixed them. |
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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
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"It does so fucking look like her" - Picasso
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Beastfodder
New Board Old Timer
O2 and clusterbusters - naturally
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Re: Dumbfounded
« Reply #18 on: Feb 23rd, 2006, 7:09am » |
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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
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O2 and clusterbusters - naturally
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RichardN
New Board Hall of Famer
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Re: Dumbfounded
« Reply #19 on: Feb 23rd, 2006, 8:58pm » |
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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
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I can live with the beast as long as I don't have to "dance" with the bastard.
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echo
CH.com Alumnus
New Board Hall of Famer
Chronic and still alive --- I Win!
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Re: Dumbfounded
« Reply #20 on: Feb 24th, 2006, 10:25am » |
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Welcome to clusterville Dave. Sorry you needed to look for us, glad you found us.
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
Proud Dad of a US Marine, and a former Marine turned Police Officer.
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Barry_T_Coles
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Re: Dumbfounded
« Reply #21 on: Mar 2nd, 2006, 9:35pm » |
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Welcome to the Global CH family Dave.
Kind Regards
Barry
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Worry is like a rocking chair it gives you something to do but gets you nowhere.
http://mushys.com/kiwi
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pfunk
Guest
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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
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