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Cluster Headache Help and Support >> Cluster Headache Specific >> coping with more than pain http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1413716907 Message started by Don B on Oct 19th, 2014 at 7:08am |
Title: coping with more than pain Post by Don B on Oct 19th, 2014 at 7:08am
because of the pain and overall debilitating nature I do not like who I have become. I have no patience and feel I will lose my mind. I lash out without notice and have difficulty supressing my anger. the pain is something that brings me to tears just thinking of it, but my temperment has begun to feel nearly as debilitating. anyone familiar ? does this make sense ? I want to be "normal" again
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Title: Re: coping with more than pain Post by AussieBrian on Oct 19th, 2014 at 7:18am
Makes perfect sense to me, Don, and we know exactly how you feel.
We're ClusterHeads just like you, mate. We understand. Welcome. |
Title: Re: coping with more than pain Post by Don B on Oct 19th, 2014 at 7:54am
thanks Brian (mate). I have had these about 4 times in the past 20 years. this time they are hanging on longer, what makes these chronic (period of time) I am hoping they are still episodic. can one still be in a "cycle" without the EXTREME pain ? looking back between "cycles" I feel as though I have dealt with headaches manageable but never really free from a cycle.
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Title: Re: coping with more than pain Post by AussieBrian on Oct 19th, 2014 at 8:17am
All headaches are horrible. The important thing is finding out exactly what sort of headache you're dealing with. There's hundreds to choose from and our Cluster Quiz will give you a good start. See the button top-left of your screen.
Getting a fair dinkum diagnosis is really important so you can rule out certain nasties and get started on a management regime that will allow you reclaim your life. Outside of this madness we know as pure pain there is a lovely world. Let's go find it again. |
Title: Re: coping with more than pain Post by Don B on Oct 19th, 2014 at 2:28pm
thank you for the time; it is clear that you understand, that alone brings at least a sigh of relief. as I recall this is the 4th time dealing with this in the last 20 years. It is also the first time I have been treated by a neurologist. I was fortunate to have a primary diagnose early on. the treatment in the past OXYGEN. Now it is oxygen and varapimil. your response affirms that I am not crazy (while at times my behavior can be) recognition of this may provide a better chance to cope with I I am affected and how OUR condition affects others. Thank you for taking the time and providing assurances and direction. I hope not to need support to that extent but as all know who suffer from CH there is NOTHING we won't do to feel better, be it physically or emotionally. I have never been one to surf the web especially to reach out for help. this site alone has helped tremendously. Yes WE can handle this. all the best !!
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Title: Re: coping with more than pain Post by Mark Olson on Oct 19th, 2014 at 8:23pm
I find I do dwell on my CH, even in between cycles. The evidence is that I lurk here on ch.com every day.
I try not to let it get me down. If it does, the beast wins, and I hate to lose. |
Title: Re: coping with more than pain Post by Don B on Oct 20th, 2014 at 7:41am
thanks Mark. good to know I an on a winning TEAM. I have to admit I am fearful that they will not go into remission this time, but all things do pass .........
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Title: Re: coping with more than pain Post by BarbaraD on Oct 20th, 2014 at 7:59am
Don, check out the Vit D3 regimen. It's worked for so many of us. I was chronic from July of 97 till last Oct when I began it. Haven't been hit since Oct 21st of last year (tomorrow is my 1st anniversary).
And yes, we do tend to dwell on our heads, but learn to live with CH. And we all get cranky when we hurt. If anyone "touched" me when I was getting hit -- well they were taking their lives in their hands.. Read the archives on this board and you'll see that you're not alone in your feelings. We've all been where you are. But we're here to help.. and you are NOT alone. Keep us informed. We do care. :-* |
Title: Re: coping with more than pain Post by Don B on Oct 20th, 2014 at 8:25am
Happy anniversary Barbara. that's great ! thanks for the words of comfort and advice. Batch has been in touch, my wife is a huge supporter who is going through this at every step. this site has been helpful (she found this for me too) I expect to follow the regimen and will share how it is going. It will be another success story others can use as inspiration.
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Title: Re: coping with more than pain Post by Don B on Oct 20th, 2014 at 9:47am
Good morning Bob. I live in Meriden, Ct. I submitted my info. on this site, not sure why it isn't uploaded. to be frank, I am not completely certain of my neurologists qualifications. I will find out more as I go forward. Simply going to see one was a step in the right direction. Admittedly, we have to be our own advocates to some degree. I will be questioning him more. I only had one visit. first steroids were prescribed and pretty effective. As the precrip. began to wind down the pain increased. I reached out to him again and was prescribed verapamil. 240 mg. I have only been taking it a few days and the episodes have decreased in frequency and volitility. I will begin the vitamin regimen recomended by "Batch". I appreciate you following up with me and I will stay in touch
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Title: Re: coping with more than pain Post by Bob Johnson on Oct 20th, 2014 at 12:25pm
From your last post about the meds the neuro has Rx--I hear as he not experienced with Cluster.
1. The steroid kills attacks rapidly but the norm is to taper off from a high startin dose (don't want to stay on fo long periods). 2. AT THE SAME TIME you should have started the Ver (takes several days for it to become effective, hence the rapid acting steriod.) BUT Verap. is common worked up to an end point dose ranging from 400 to 900mg. 3. And also giving you a quick acting abortive med in case an attack slips by the Verap. This 3-step package is standard for Cluster. Doesn't sound this is the combo. he is using. So, urge seeking a headache specialist. But that being said, it would be wise to see a new doc without starting the Vit D program before a good diagnostic work-up from a new doc. (Cluster is far more complex than is appreciated and there are a number of disorders which mimic it, some rather serious, which need to be ruled out before a final Dx of Cluster.) New doc needs to see you as a "clean slate", not using any treatments which can change the picture before he can come to a judgment. After the diagnostic, you can ask him about any alternative treatment program which interests you but, in any case, he should always be aware of what you are doing. (Amazing how many people hide information from their docs; swap meds with friendds, changing doses,etc.) |
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