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Cluster Headache Help and Support >> Getting to Know Ya >> Introduction http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1246699036 Message started by Yakamoz on Jul 4th, 2009 at 5:17am |
Title: Introduction Post by Yakamoz on Jul 4th, 2009 at 5:17am
Hello. I am brand new to this forum and reading through the introductions has nearly reduced me to tears. I first started to suffer with CH when I was sixteenish although didn't know at the time. I was variously prescribed glasses, pain medication, had two operations on my sinuses and dismissed as a crank. I have felt alone with this all of my life and am finding this quite hard to type. I am not an emotional sort but am going that way now. I have tried many types of medications, mostly migraine specific and useless and it wasn't until my wife found a circulation called Migraine News in the UK, with an article on CH, that I finally realised what I had. I would have been about 37 years old at the time. My doctor hadn't a clue but there was a name on the article, a specialist in London, who was happy to see any sufferer. I got an appointment and travelled down to the big smoke to see him. He knew more about me than anyone else I had ever met but he was still researching and wanted to learn as much as he could. He even asked if he could induce an attack so that he colleagues could watch. I agreed but it didn't work. He prescribed me Verapamil and I have been pain free for 10 years or so now.
What I want to know from others is whether you feel that this condition has affected your personality at all. My wife could always tell before me when an episode was close to arrival because I became very bad tempered and would snap at the slightest thing. That tended to go away when the attacks started but was quite upsetting. I have to say I hadn't noticed it until she pointed it out but I remember periods earlier in life when I would be filled with rage and thought I was quite mad. Unfortunately, whilst the pain has gone, the other symptoms remain. I still get shadows and the fear that the beast will return and this seems to trigger behavioural changes just as before. Verapamil also seems to have had an affect on my weight also as I have got quite large since starting it. Despite being pain free for such a long time I find that I talk to the beast still and challenge him to come back. I am too strong for him now after all!! Am I bonkers. I am now 50 years old and heard that the headaches can go away when you reach your late 40s/ 50s so I have taken the decision to stop taking the tablets and see what happens. I am scared to death but will let you know what happens. Heat/ hot weather always seemed to be a trigger for me and, as I emigrated to southern Italy last October, this summer will be a good test. Any help or advice gratefully accepted. Pete |
Title: Re: Introduction Post by Yakamoz on Jul 4th, 2009 at 9:20am
Many thanks for the above and I shall look into it further. I think myself that on a subconscious level somewhere I know that an episode is on the way and this, in turn, triggers a degree of tension, fear, etc which causes my temper swings. I was a police officer for 30 years and the temper never manifested itself at work, that would have been unprofessional in the extreme, and I think containing it at work as well as trying to function during an attack, caused increased problems away from work. It is very strange, I have never really thought about it so much before and it is interesting for me to discuss on this forum. The last week, since I stopped taking the tablets, has led to a degree of tension that I have not experienced for some time which tends to confirm most of what you have written.
The worst thing, I think, is the shamefulness of being crippled by pain. Having played rugby and being an old-fashioned type, men should be above this so I suppose I increase the tension by being angry with myself for being afraid. This self analysis can't go on, I'm in danger of sorting myself out! I am very grateful for your comments and very detailed response which must have taken some time. |
Title: Re: Introduction Post by McGee on Jul 4th, 2009 at 10:55am
Hi Yakamoz,
No your not bonkers, mad, insane or anything else mental (thats my job). what your feeling is natural and very normal (at least from my point of view). i think most of us here have felt how your feeling and when i found this site I must admit i had a little sniffel to myself as i realised i wasnt alone (it was just a sniffel mind you) as for feeling angry think of it this way when you try to help a wounded animal (dog etc) it is very likely to turn around and bite the person trying to help it. its a normal generic thing (probably) and where are still animals at heart. I for one have told those who are close to me to please leave me alone during a hit as i get very snappy when im being asked questions every 5 minutes. most people respect this however one friend (who will remane nameless )kirsten)) doesnt seem to get it so finally i told her for the 10th time that she cant help me and to please leave me alone untill its over she still carried on so i screamed at her that if she wanted to help me then to get a gun, load it, place it on the side of my head and to pull the trigger (bit extreme i know) she now leaves me alone (she doesnt have a gun) we all feel like crap during these times and our nerves are shot to pieces but its our character that gets us through with the help of loved ones. Me im mad as a march hare so ive got now worry´s mark (the only mad man with the key to get out) |
Title: Re: Introduction Post by coach_bill on Jul 4th, 2009 at 11:52pm
Welcome,
There aint no shame in the beast's game. So there should not be any in yours. Coach Bill |
Title: Re: Introduction Post by QnHeartMM on Jul 5th, 2009 at 5:51pm
Hi and welcome. I know my husband tends to be edgy when he's on cycle. We know to be quiet during a hit and for sure not talk to him. But in between I think his edginess is caused more by his interrupted sleep (so not being rested enough) and perhaps side effect of medication.
Not sure but I've learned over 27 years of marriage to just try to keep an organized house, quiet, and not do things that would otherwise irritate him. (Unlike any other day when I am just mean! J/K). |
Title: Re: Introduction Post by Callico on Jul 7th, 2009 at 6:18pm
My wife used to tell me as much as a day ahead of time that I had an attack coming, but that was while I was still episodic. Now I'm just hard to get along with all the time. I agree that it is in part a matter of lashing out while in pain, partly due to sleep deprivation, and the meds can definitely cause irritability. Verap did that for me a lot when I was on it.
Glad the Verap worked so well for you in keeping the beast at bay. I hope he has forgotten you now that you are weaning yourself off the meds. Please stay in touch! I for one am very interested in how you get on. Jerry |
Title: Re: Introduction Post by Skyhawk5 on Jul 7th, 2009 at 11:46pm
I believe only one CH attack will be with you for the rest of your life. Learning to live your life after one of these is the key.
We that have CH attacks more often have no other choice but to live as we can..... Best of Luck, Don |
Title: Re: Introduction Post by Yakamoz on Apr 20th, 2010 at 5:47am
I said I would update you as to progress. Not good, I have now started another cycle of CH, my first for over 10 years. They started as very minor attacks about 10 days ago, left eye, probably 3 out of 10 for pain. I thought that this may be it but they have gradually become worse, not reaching the 10/10 I remember but certainly 6-7 and keeping me awake, waking me up and disrupting my sleep patterns. I have not started back on the Verapamil yet as I am hoping, probably stupidly, that it will be a brief attack and I can move on. I hate the thought of being back on tablets again but the recurrence has been very upsetting so I have to consider it. Maybe experimenting and stopping the tablets was not wise but I hung my hope on the fact that I had read that CHs often disappear in ones 50s and 60s (I am now 51). Are there many 50-60 year old sufferers out there?
Will keep you posted |
Title: Re: Introduction Post by George on Apr 20th, 2010 at 11:44am Yakamoz wrote on Apr 20th, 2010 at 5:47am:
I'm 56. Still getting them, but I'm currently out of cycle. (Started when I was 13, have been episodic ever since.) Perhaps one outgrows them. Couldn't say. Sorry you've started another go-around. Hope this one is mild and short. Best wishes, George |
Title: Re: Introduction Post by Dallas Denny 62 on Apr 20th, 2010 at 4:05pm
Sorry you found it nessesary to come back to the board Yakamoz!!! Also sorry to be the bearer of bad news but......I heard the same thing from a Doc when I was about your age.....my last cycle started the middle of last August after an almost 3 year remission (longest in 27 years).......so at almost 63 I'm wonderin "what part of my late 50's do I gotta get to?"
Along the lines of Bejeebers remarks, CH started for me shortly before I turned 21 while serving in Nam. My second cycle didn't occur until some 15 years later! After all of the media coverage such as that which he posted, I have become convinced that I inadvertantly aborted CH in my life for that 15 years thru my frequent recreational use of mushrooms. My second cycle started less than a year after I walked away from that lifestyle.....it's not something I would have ever considered doing again were in not for CH but just in case I haven't reached the right part of my late 50's yet, I will have some alternative meds available the next time the beast comes to call!! DD |
Title: Re: Introduction Post by Yakamoz on Apr 21st, 2010 at 8:06am
I have started back on the Verap now and will keep on it until I can get hold of some Oxygen. Where we live in Italy they are a little one dimensional as far as medicine goes and I hate the thought of going through the same old shit again with Drs trying different medicines and not being believed and, as I can only get Oxygen on prescription here (unless I was a welder I suppose!) I'm not sure I want to go through it. I have developed and unhealthy disregard for Drs over the years so don't feel inclined to trouble one unless I'm dying and, even then, only if it was imminent.
Thanks for the advice guys, feels better just to talk about it. |
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