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concerned
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new to you not CH
« on: Aug 9th, 2005, 12:11pm » |
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hello
I am not new to CH my life partner has been suffering for about 20 years now, THANK GOD I HAVE FOUND YOU!!
Thought this was a long lonesome battle, now i see it is not so lonesome. I found this website as i was once again looking for something ANYTHING to help get him through this just one more time.
We have tried numerous meds and therapies nothing helps but you have to just keep looking can not give up.
As I said I am not new to CH, I am a strong supporter of a long time sufferer, we have tried pain management what a joke steriods, herbal remidies over the counter and numberous others nothing helps. We quit smoking all that did was make us grumpy from lack of nicotine and miserable due to the pain. Does any one have any suggestions on what we can try this current attack(for lack of a better word) is BAD(to the point of contimplating suicide)
Please if there are any sugestions on ANYTHING to try to stop the cycle let us know. He's broke and I can not find the parts to fix him. If you have the parts we need please let us know.
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LeLimey
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Re: new to you not CH
« Reply #1 on: Aug 9th, 2005, 12:28pm » |
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Hello,
I'm both sorry and glad you've found us, sorry you've had to but very glad you have!
I don't want to start off by recommending a pile of stuff you've already tried, thats just wasting your time.
Why don't you tell us what you have tried, what if anything has give any relief? How long your husbands cycles last and how often they come or if he is chronic? It all has a bearing on what experiences we can share with you.
None of us are doctors but we have a vast wealth of experience of CH and we will help you all we can.
Speaking of which.. there is alot we can do to help and support YOU too. I'm a sufferer, I don't know where I would be without my wonderful husband and supporter. I don't know a single person here who doesn't feel the same. You are the glue that holds us together and I think its every bit as hard for you, if not harder, to deal with our pain as it is for us.
on behalf of all of us. THANK YOU!
Now.. let us help!
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concerned
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Re: new to you not CH
« Reply #2 on: Aug 9th, 2005, 2:13pm » |
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 We have tried Antihistamines, Lithium Carbonate, Propranolol, Amitriphline, kBerapamil, Methysergide, Cyproheptadine, and Ergotamineand caffine Excederine migraine, ice on the eye and the back of the head, pacing, banging the head into the wall, and last night as a last ditch effort to make it go away he tried shrooning for the first time. Nothing has given any relief. The attacks are comming on more frequently about every 20 minutes and lasting 20 to 30 minutes all day and all night. His attack are eposidic and usual hit in the month of june july and August however he has had problems in Febuary and March on occasion they usually last a month or more.
Any of you not being doctors doesn't concern me as the experence we have with doctors is that they don't really know a whole lot, when all of this started about 20 or so years ago they told him this was just tension headaches wish that tension was all it was. Several of the docs he has seen just look at you in amazement run to the medical book and do what it says. He has seen neuro surgens, family docs and pain specialist, the pain management sessions only upset him as he felt the nurses there had no clue of the pain he was felling.
Sitting in front of the AC seems to help some when he is peaking or at least he thinks it helps, i am not so sure and i think it just finishes it's cycle and goes away. Oh yea we also tried Mylitonin and Benadryl, Fish oil, vitiman c, velerian root, St. Johns Wart,and massive glasses of white grape juice(i went to the library and spent 3 days resurching what could possibly help this is what i came up with 3 years ago it stopped the cycle, so far now it has not helped at all.
it is hard on those of us who do not suffer husbands wives and children but none of us can imagine the pain you must feel. When something puts a 250 pound man on his knees crying like a baby it BAD NEWS. I have seen him bang his head on the wall to try to make it go away.
Thanks for the support and sorry for the pain no one could have ever done anything so wrong in their life to have to experence so much pain and sorrow.
Please help us if you can, we are at the end of our rope
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SteCo
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Re: new to you not CH
« Reply #3 on: Aug 9th, 2005, 2:49pm » |
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Hi Concerned,
on Aug 9th, 2005, 2:13pm, concerned wrote:| and last night as a last ditch effort to make it go away he tried shrooning for the first time. Nothing has given any relief. |
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Shrooning??
IMHO..your first line of defense is O2 (oxygen)..Look at this link
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
This comes from the buttons on the left of this page.
Pay particular attention to the high flow regulator and non-rebreather mask....as they are both important for quickest relief. The O2 seems to work for the majority to abort individual attacks. Then take some time to do some reading, choose a battle plan, ask questions, and go for it.
Good luck !
SteCo
PS....get him to look at this site..just knowing you are not alone with this stuff is a great help.
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| « Last Edit: Aug 9th, 2005, 2:58pm by SteCo » |
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lionsound
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Re: new to you not CH
« Reply #4 on: Aug 9th, 2005, 3:04pm » |
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Hi concerned,
I could feel both of your pain in your post . I'm sorry that your family is suffering.
Has he tried Oxygen?
read this:
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
usually you need a script from a doctor. does he have a current neurologist? And you're right not all neuros know about CH...not even if they claim that they do. You need a knowledgeable one. Don't give up....please try to find one.
You also didn't menton if he's tried any of the triptans like imitrex to abort the CH's. Sometimes your GP will give you a script for that.
I would most strongly suggest that you invite him to come here and read with you. (or print things out and hand it ot him) Learning that you are not alone in your pain and the support that goes with that is just as important as any other treatment.
read, read, read, and please ask more questions ...
Thank you for being an amazing supporter. We are glad that you have found us.
Be well,
lionsound
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nani
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Re: new to you not CH
« Reply #5 on: Aug 9th, 2005, 4:34pm » |
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Hi concerned, I'm sorry you all are having such a rough time.  Yes, check into oxygen. Also, if you're husband tried shrooms, it's not at all unusual for the CH to get worse first. If you want to try any of the treatments, traditional or alternative...do your homework first. Make sure you both understand what to expect.
pain free wishes to your home, nani
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concerned
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Re: new to you not CH
« Reply #6 on: Aug 9th, 2005, 8:28pm » |
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we are from a small rural area with out alot of Doctors or specialist. The one's in our area are really not sure what to do for him. Most of the info they get is because i have either taken it to them or called their attention to it. He has an appointment with a neuro. at Hopkins but it will take 3 weeks(not till the end of the month) We don't know that this will help either although in reading and looking at all that is posted we will be asking for oxygen. 9Don't know if we need a script of not, they have oxygen bars in the malls.) when you take imitrex how long should it be before it works? With oxygen is it something that works right away? Does it only make the pain go away for a short time does it shorten the lenght of the attack? when i look at this he is with me and is amazed that he is not alone in this we thought for the longest time we were all alone. Thank you for all the wonderful sugestions we will keep reading gaining knowledge and hold the faith that we can beat this. The doc has him on verapamil now it didn't stop this from comming on he has been taking it for about 2 years now maybe it quite working, in reading some other messages something that worked today may not work tomorrow. I know this is the hardest thing we have ever gone through and it is a comfort to know we no longer have to do it alone.
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unsolved1
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Many swear by O2 ... Myself, I rely on Imitrex injections. (It takes my pain away within 10-15 minutes.)
Stick around and read up ... theres alot of people here who can possibly help.
Goodluck,
UNsolved
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concerned
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Re: new to you not CH
« Reply #8 on: Aug 10th, 2005, 6:54am » |
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glad you found something to help i will be looking in to all information on imitrex before we go tothe specialist need all the knowledge we can get. Does anyone know why something that worked once does not help another time?
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lionsound
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Re: new to you not CH
« Reply #9 on: Aug 10th, 2005, 7:10am » |
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I'm afraid we don't know why that is, but it does happen a lot. Sometimes things will work and stop mid cycle only to work again the next time. no rhyme or reason and very frustrating.
Still lots out there to try
PF's
lionsound
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burnt-toast
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Re: new to you not CH
« Reply #10 on: Aug 10th, 2005, 8:03am » |
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Seriously, if the CH is causing causing someone to contemplate suicide and the support and information that they get here doesn't help -
Please seek professional counseling.
We're always here but there are some things that require more help than we can offer.
There is nothing wrong with feeling lost and helpless when dealing with this nightmare. But if it pushes someone too far, professional assistance may be more appropriate.
God Bless
Tom
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seasonalboomer
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Re: new to you not CH
« Reply #11 on: Aug 10th, 2005, 8:17am » |
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on Aug 9th, 2005, 8:28pm, concerned wrote:we are from a small rural area with out alot of Doctors or specialist. The one's in our area are really not sure what to do for him. Most of the info they get is because i have either taken it to them or called their attention to it. He has an appointment with a neuro. at Hopkins but it will take 3 weeks(not till the end of the month) We don't know that this will help either although in reading and looking at all that is posted we will be asking for oxygen. 9Don't know if we need a script of not, they have oxygen bars in the malls.) when you take imitrex how long should it be before it works? With oxygen is it something that works right away? Does it only make the pain go away for a short time does it shorten the lenght of the attack? when i look at this he is with me and is amazed that he is not alone in this we thought for the longest time we were all alone. Thank you for all the wonderful sugestions we will keep reading gaining knowledge and hold the faith that we can beat this. The doc has him on verapamil now it didn't stop this from comming on he has been taking it for about 2 years now maybe it quite working, in reading some other messages something that worked today may not work tomorrow. I know this is the hardest thing we have ever gone through and it is a comfort to know we no longer have to do it alone.
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That's great that at least the doctors you are able to see will read or lsiten to what you are bringing them. You're ahead of many here who have to fight for thier meds.
As for Oxygen. Many sufferers have great success. I've had almost 80% success with Oxygen fully aborting a hit in less than 10 minutes (a couple in less than 5 minutes).
I used Imitrex for the first time on Monday and had a Kip 5 melt away in about a minute and a half.
My results may not be normal but they sure as hell have changed my life. Not nearly as depressed about my cycle, and just rolling with the punches. And believe me, i used to get really down and detach from everyone when my cycles hit. Building an arsenal of options can greatly enhance your confidence and HOPE when looking toward a cycle.
There is hope and not only life when out of cycle but life during cycle.
Scott
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SteCo
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Re: new to you not CH
« Reply #12 on: Aug 10th, 2005, 10:56am » |
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on Aug 9th, 2005, 8:28pm, concerned wrote:| We don't know that this will help either although in reading and looking at all that is posted we will be asking for oxygen. 9Don't know if we need a script of not, they have oxygen bars in the malls.) when you take imitrex how long should it be before it works? With oxygen is it something that works right away? Does it only make the pain go away for a short time does it shorten the lenght of the attack? |
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Typically you will need a script for O2 (print the link out and give it to your doc). IF you can not get one....look at that link again and it will show you that welders O2 is the same stuff. Again, the mask and high flow regulator are very important for this to work well. The O2 for me is the most effective at the onset of an attack. The night ones (already full blown) are more difficult, but keep huffing as it will work eventually. And yes, this does abort an individual attacks. Be sure to cut off the strap on the mask....the O2 makes a person relaxed, and he may fall back asleep while using it. So better to cut off the strap so he is not breathing in pure O2 for extended periods of time. Short durations like we use it (10-30 minutes) is safe.
HTH
SteCo
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concerned
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Re: new to you not CH
« Reply #13 on: Aug 11th, 2005, 5:41am » |
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thanks for all your wonderfull advice it gives us faith that this will soon end(only to begin again) but there is some light at the end of the tunnel. He called the doc for o2 yesterday, no way reading the web link for o2 and your replies got some from a welder friend stopped and attack yesterday in about 3-5 minutes. They were getting milder yesterday maybe a Kip 3 to 4 he says he can live with that wishes he did not have to wishes they would just go away but is comming to terms with it this time. Evey time they hit it just gets harder and harder and the man is scared with good reason. He knows when they are comming on and now knows at least a few more things to try. God Bless you wonderful people you have given us somewhere to go when it seems the rest of the world just can not understand. YOU ALL ARE THE GREATEST!!!! We will keep you posted on the progress.
Love and thanks
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AussieBrian
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Re: new to you not CH
« Reply #14 on: Aug 11th, 2005, 5:57am » |
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on Aug 11th, 2005, 5:41am, concerned wrote:| but there is some light at the end of the tunnel. |
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And that's what we live all for, hope. Terrific that things are looking up for you and yes, please keep us posted.
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jcmquix
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Re: new to you not CH
« Reply #15 on: Aug 11th, 2005, 5:59am » |
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Hi....
Thats good news that the O2 is helping... I started this cycle on June 1st, so I know where you both are.. I was slowing down on my hits, but the last 2 days mine have been ramping up as well....
I know where you are, I am also starting to fear sleep and the CH's but I know I can beat this thing, and he can too... I now its HARD, Very HARD... Hang Tough...
Just a few weeks ago my Family was also in Hell... it was getting really bad... my wife got on here and found a few people to talk to and vent to.. and now things are totally different in my house, my wife (Sassy_Lady) does not feel upset when I get hit, she now has a better understanding. Thanks for supporting your husband... and Yes things will get better, he's just got to Fight the Good Fight and find out what works for him, it is a journey, but it will get better...
You Both can beat this BEAST....
Our Prayers and Wishes for PF days go out to You BOTH
Charlie
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