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Title: Familar faces and names... Post by helpless23 on Nov 21st, 2006, 9:00pm I figured I'd post this in a couple of spots. Hi everyone, After a much needed break from everything and everyone, I'm sad to say that I'm in need once again for your help and support. Ken has gotten attacked by the beast once again after being 3 years out of it and the worst part about it is that they are worse then ever. Of course, we're doing Verapamil therapy, got a new neurologist and have Imitrex, but being they hit him in his sleep mostly, Imitrex is out and Insurance company being @#$%! once again. What a surprise. Not much has changed here. His headaches are intensifying more and more every night and they come at the same hour every night to where he's getting very little sleep (4-6 hour per WEEK) and he's afraid to go to sleep or take the Imitrex even, in fear that he will need it the next day, there will be no refill and nothing to aleviate the pain. Last night he was in the bathroom banging the cabinet doors, running water on his hands and face, almost vomiting and found himself trying to find comfort on the cold tile in the bathroom. I'm at a loss, once again. Don't know what to do. I hate sitting here knowing what he's going through and not being able to even offer a comforting word or even the last Imitrex in my purse becuase I know he won't take it. So here we go again. I'm so over this it's not even funny. Today marks an earlier hit as I sit here looking for something, ANYTHING to make the pain go away while he's in the bed suffering. It breaks my heart, but I don't need to tell any of you that. You all know the beast well. What I'm wondering is has there been anything new that is found for relief. I don't have the time or energy to read through the site and all the posts, so I'm looking for a quick answer. Just in time for the #$%@! holidays. Hope to hear from some of you soon. Toni |
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Title: Re: Familar faces and names... Post by Linda_Howell on Nov 21st, 2006, 9:07pm [smiley=frown.gif] |
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Title: Re: Familar faces and names... Post by Jonny on Nov 21st, 2006, 9:13pm Welcome home,Toni...its good and sad to see you again (You know what I mean) Check the "Medications" board, some new stuff.....some stupid, some maybe worth a try. |
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Title: Re: Familar faces and names... Post by helpless23 on Nov 21st, 2006, 9:16pm Thanks hon, Kinda good and bad to be back. I've been reading -- there's a lot to catch up on in almost 2 years. :-( Hi Linda. Toni |
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Title: Re: Familar faces and names... Post by Grandma_Sweet_Boy on Nov 21st, 2006, 9:33pm Toni - how nice to see you back but sad too! Sorry to hear Ken is having problems again. The last email I sent to you got bounced back so I figured you had changed providers or something. You're not mentioning 02 in your post - is he using that or tried it in the past. Stick around now, ya hear!!!!! I want you to change that "Helpless" name of yours to something way more positive. How 'bout Terrific Toni or something! ;) Hugs Carol |
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Title: Re: Familar faces and names... Post by helpless23 on Nov 21st, 2006, 9:37pm Carol... Great to see you./ Thank you. I didn't change providers, e-mail is still the same. krocksvixen@comcast.net No, we haven't done the 02 route. Had so many problems with getting in the past and had such great results with the Verapamil therapy -- it may be time to check in, but I replied in the last post -- Ken is going in for surgery in 2 weeks so -- not so sure how he feels about that. I'll talk to him though. Terrific Toni? Oh Carol. Still the same sweet ass person you've always been. That's good to know. :-) Love you guys! Toni |
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Title: Re: Familar faces and names... Post by BlueMeanie on Nov 21st, 2006, 9:40pm Hi Toni, Welcome back !!! I've been out of cycle for quite some time now and your post sure reminded me of just how bad these CH's are. Carol brought up a good point; check into the 02 as it's alot cheaper. Tell Ken we're pulling for him to get through this rough cycle of his. |
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Title: Re: Familar faces and names... Post by helpless23 on Nov 21st, 2006, 9:44pm I will definitely check into it. Thanks for all of the support. We'll need the rooting. Toni |
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Title: Re: Familar faces and names... Post by nani on Nov 21st, 2006, 11:16pm Hi Toni. I'm so sorry you're back, but I'm happy to see you. Pay special attention to kudzu, and the clustermasx... hugs, nani |
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Title: Re: Familar faces and names... Post by psycofemale0403 on Nov 22nd, 2006, 2:03am The side effects KILL me but the only thing that breaks my cycle is prednisone, 60 mg per day. It makes me so sick, and I hate to take it. I've been off of it for three days now, and the beast is back.. I'm gonna deal with them for as long as I can I've got an appt. with a new neurologist, to try something other than prednisone, but.. just thought I'd give you my input.. Btw... my cycle is also every 3 yrs! Like clock work since I was 14. Hang in there. OH.. and I also like to use Maxalt, as and abortive. It takes about 15 mins to kick in, and makes me pretty loopy.. but it helps a little .. sometimes. Lisa |
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Title: Re: Familar faces and names... Post by tanner on Nov 22nd, 2006, 2:45am Hi Toni, I am sorry to hear that Ken is in need of this group again but real happy that you remembered where your friends were :) I can barely imagine what a horror it is to be PF for that long and then have this monster come back into your life. As Jonny said there have been some new things that have come around the bend and I hope you find something quickly that helps. I wholeheartedly agree with Nani about the Kudzu, cheap, very little downside, and has worked wonders for some. I don't happen to be one of them but that is beside the point. The O2 has helped me to an extent especially after someone insisted (sent me) a clustermasx. I hope you will find that your Ins. company has changed making it easier for you to get and get cheaper. We are with one of the many BCBS carriers and I get mine for a $10.00 a month co-pay regardless of what I use. I would also check into the melatonin as it may buy Ken some additional sleep. I can't speak first hand about any of these remedies as I am one of the fruit loops that nothing (yet) is working for except the O2 and it only helps me on low Kip morning hits. Please don't use my failures as an example though because I think many more people are finding help. So don't give up the ship and please give my best wishes to Ken and take some for yourself. You supporters are the strongest medicine we have and you deserve a world of thanks! Hugz and good vibes.......Tim |
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Title: Re: Familar faces and names... Post by Callico_Kid on Nov 22nd, 2006, 3:14am Welcome back, NOT! Sorry Ken is getting it so hard right now, but remember they do end. There is hope out there. When I was using Verap I got only marginal help from it until I also started Lithium with it. O2 is a good alternative, relatively inexpensive even if you have to pay it out of your own pocket. Red Bull has been a real lifesaver to me the last few months. Don't know if it would keep Ken from sleeping, but doesn't sound like it would make much difference right now. Tell him to slam one down at the first sign of an attack hitting. He can't drink it slow, but has to chug it right down as fast as he can drink it. It has kicked an 8 back to about a 2-3 in about five minutes for me, and the caffeine doesn't keep me awake at all when I'm fighting the beast. Jerry |
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Title: Re: Familar faces and names... Post by Callico_Kid on Nov 22nd, 2006, 3:16am I didn't phrase that very well! :-[ By all means you are welcome back. I'm just sorry you need to be here! jc |
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Title: Re: Familar faces and names... Post by Charlie on Nov 22nd, 2006, 2:53pm Rats. So sorry it was this horror that brought you back. I don't have a magic bullet but trying this technique can't hurt and it may work. Good luck. Dr. Wright’s Circulatory Technique: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. Charlie |
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Title: Re: Familar faces and names... Post by helpless23 on Nov 22nd, 2006, 3:01pm Wow! There are so many new techniques showing up within the last 2 years. This is a good thing. I will pass it all along to Ken. I did find out that the use and drinking of 'Red Bull' can be fatal if you are on Verapamil therapy. Not because of the caffeine boost, but because of Taurine, which this contains a lot of. They should mention that along with 'Grapefruit Juice' on the 'how to's and how not to's' on the information booklet that comes with it, don't ya think? Just in case anyone else knows. I'm glad that I researched it some more before I pumped it in him but Im' kind of sad that it won't work for him and I hope that anyone else on Verapamil therapy reads this too and has a heads up. Red Bull is expensive, but it's a lot cheaper than Imitrex. Ken does run his hand under cold water between his index finger and his thumb until it hurts, to try to take his mind off of the pain. Who knew that it helped with circulation too, thanks for that. You guys have been great -- I can't tell you thanks enough. :-) Have a great thanksgiving. Toni |
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Title: Re: Familar faces and names... Post by helpless23 on Nov 30th, 2006, 8:29am Sorry it's taken so long to respond back. Ken has been battling the beast every night! He's 6 days out of his surgery and the other night was a scare. We were up until 4AM with the beast. It was hovering most of the night and didn't peek it's ugly head out until about 11:30PM or so. It lasted for about 45 minutes. By the time he got settled into bed, no less than 15 minutes later -- another one hit. Imitrex, for the first time, didn't work. He had to sit through 2 of them. 3 hours later and almost passed out from exhaustion -- it finally let him alone. He saw the neurologist and he keeps a journal of the headaches for him and decided that he will be taking a break until his surgery for 7 days with Prednisone therapy. He's also battling very low blood sugars that come on rapidly. WTF?! Thank God for the prednisone -- if only for 7 days. We'll take what we can get. The first predisone he took the beast tried to come out -- but it couldn't and he had the first pain free night in a few months. I'm still pissed off about this. Grrr. Toni |
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Title: Re: Familar faces and names... Post by minnie on Nov 30th, 2006, 9:01am (((Toni & Ken ))) I am so sorry your back under these circumstances. I hope that the prednisone makes the beast think twice about coming back.I also hope the insurance will work for you and you get what you need especially O2. Don't forget to take care of yourself too.A broken heart (from watching the attack) takes a lot out of you and he draws some of his strength from you.I ask Leesa how your doing so that I kinda keep an eye on you.Wish I can do more but you have all the prayers and vibes I can send coming your way.please keep us updated.... Minnie |
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Title: Re: Familar faces and names... Post by Kevin_M on Nov 30th, 2006, 9:18am on 11/21/06 at 21:00:39, helpless23 wrote:
on 11/21/06 at 21:37:05, helpless23 wrote:
on 11/30/06 at 08:29:07, helpless23 wrote:
Results with verap in the past, using it now but no prevention but what dose?. There are times I need less and times more. Right now it seems he has no prevention going on AND no abortives. The neuro can alter the verap but with surgery coming up and the sugar thing this gets more complex. Pred is a relief but at this point oxygen seems the safest route by necessity still if increasing verap isn't safe. Right now he's seems in peak of cycle, seeing a neuro, and basically no relief the way things are going. Glad the pred is working for him now but stay in touch with neuro about this, oxygen is always worth another try. ps. what kind of trex, nasal spray or inject? |
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Title: Re: Familar faces and names... Post by Linda_Howell on Nov 30th, 2006, 11:28am Quote:
I, personally have a great Dr. One who has told me that I know more about CH than he does and he is willing to try ANYTHING I ask him to. But I DO realize that not all people are as lucky to have a good doc. If I had to have a new Dr. and I asked him to precribe 02 and he said no..........I'd be pounding down the doors to a Dr. who will. I will NEVER, EVER understand a Drs. reluctance to prescribe something simple, inexpensive, safe and works for 70 % of us as an excellent abortive. 02 should be a first line of offense against CH..with all the other toxic and expensive drugs being added later if 02 fails. Oh-oh....I feel another soap-box rant coming on. >:( |
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Title: Re: Familar faces and names... Post by Mattrf on Nov 30th, 2006, 1:31pm Toni did you by chance read up about how you can take the auto injector for Imitrex apart and split up the dosage so it last longer? I have read people saying that it only takes like a third of an injection to do the trick so they can get three injections out of one making it last longer and cost less since you get three times the injections. I think there is directions the Imitrex link on the left. Really sorry you had to come back but glad you did, hang in there. Matt |
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