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Jaroon45
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Depression/confidence and CH
« on: Oct 7th, 2006, 3:54am » |
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Hi,
Due to chronic cluster headache i did not work for almost 5 years now. Awaiting a operation..."occipital nerve stimulation" i have tried most of the medication available for CH.
Now i am using verapamil (960 mg per day), Neurontin (2400 mg per day) and Imigran injections to abort. It is working okay....not great but better then the time when i had +/- 12 attacks a day.. Still without any reason i can have several attacks every day/night.
I want to work again. But i feel like my brain is not working well anymore and i am also depressed. Before i was emotionally a very stable person with self confidence......that has totally gone. I feel like my mind is 'blocking'. People can explain something to me and my mind will just not take it in.
Does anybody have any advice (maybe medicine?) to get a bit back to normal again? Is taking lithium a good idea? It feels a bit like using Topamax at the moment.
Thanks.
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Jonny
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Re: Depression/confidence and CH
« Reply #1 on: Oct 7th, 2006, 4:09am » |
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I was chronic for 31 years, at year 15 I was diagnosed and started 480 Verapamil and 600 Lithium......it was the best thing I ever did, the docs here in the states call it "The chronics cocktail"
Ask your doc to try that before surgery.
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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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Jaroon45
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Re: Depression/confidence and CH
« Reply #2 on: Oct 7th, 2006, 6:48am » |
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Thanks for the reply.
Does this cocktail also help you getting more 'stable' mood wise etc.? It never happened to me before but i am 'swinging' all the time emotionally. I make mistakes in writing letters.....turn around letters at the keyboard.....sometimes i am reading a text and it is taking some time to 'get' it....i can read a book but i will forget most of it.....people can tell me things which i will forget a day later.....
I am getting sick and tired of this. I had a good job before. I know that starting at that level again will be impossible. But to start as a garbage man on the back of a truck is not my idea of a good start. I just want my brain back. I do have the feeling that all the medicine i took last few years + the pain 'damaged' my brain.....and that scares me a lot. According to my neurolog the brain will 'return' if the headaches are gone. But what if the attacks are still there? people have to live like this till they are around 70 years old......that is when the attacks normally stop.
A bit of a long story. I also get tired of people around me who do not understand the position i am in. "oh, you are looking for a job again? Why don't you try this job as sales manager?" It is hard to explain what i can and cannot do.
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kcopelin
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Re: Depression/confidence and CH
« Reply #3 on: Oct 7th, 2006, 9:11am » |
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Clusterbusters?
Depression would seem to be a natural outcome of CH-it involves brain chemistry as well. Also, not being able to work can be stressful, and I understand what you're saying about loss of confidence, mental acuity and concentration. Those are issues that you CAN deal with. Use notes to self, write stuff down-don't expect perfection from yourself-how about-treat yourself as gently as you would a loved one going through what you have been going through?
You are still the same person you were before the CH started-at the core or center of you. You cannot let the pain of CH, or your work, define who you are. You are way more than those things.
I would defintely suggest exhausting all means before surgery! Lithium and Verap have worked for others-sure beats surgery!
Praying you get some pain free time,
kathy
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Charlotte
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Re: Depression/confidence and CH
« Reply #4 on: Oct 7th, 2006, 10:19am » |
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No advise but I want to wish you luck.
Charlotte
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eyepopper
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Re: Depression/confidence and CH
« Reply #5 on: Oct 7th, 2006, 10:27am » |
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on Oct 7th, 2006, 3:54am, Jaroon45 wrote:Hi,
Due to chronic cluster headache i did not work for almost 5 years now. Awaiting a operation..."occipital nerve stimulation" i have tried most of the medication available for CH.
I want to work again. But i feel like my brain is not working well anymore and i am also depressed. Before i was emotionally a very stable person with self confidence......that has totally gone. I feel like my mind is 'blocking'. People can explain something to me and my mind will just not take it in.
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Jaroon, I don't really know if I could be of help to you, but I am experiencing the same type of "brain blocking" that you describe.
Before clusters, I worked at a demanding job and was the person everyone relied on to remember things or analyze situations. I married and quit that job and stay home to begin a family, thinking that some day I would return to the old job.
Shortly after I had my second child, I began getting hit (with the chronic version) of clusters. I get 4-7 PF days, and then a new two-week cycle starts. I've been on several kinds of meds (one being Topamax), always with mediocre results. I'm currently on Verapamil and taking Melatonin. I use oxygen and Imitrex as abortives. (I'm doing better than I've ever done before (less hits), but the beast is still running the chronic cycle.
Anyway, I just started a part time job. When they called to hire me, I was upfront about the clusters. They hired me anyway. I knew I couldn't hide this, and that sometimes I would just bite the dust. They've been extremely nice. . . . but I notice that I don't get what someone is explaining to me the first time the way I used to. I also seem to have a severely altered short-term memory. I really have to work at thinking and remembering what I just did. I've been wondering if the beast slowly does damage to one's thought process. I honestly don't think it's the drugs that made me this way. I think it's the attacks themselves. I know some would say that aging does this, but it just seems to be such a radical change from the way I used to be. Anyway, just my personal experience.
I am trying to keep a positive attitude, and when I am at work, I try really hard to do the best job I can. I try to do extra work, and I try to keep ahead of everything. I also take lots of notes. Don't give up. Even if your thought process has slowed, you are still a productive, worthwile person.
All the best to you.
Debby
P.S. Has anyone else experienced "brain blocking" or a slowed understanding when something is being explained?
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Jonny
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Re: Depression/confidence and CH
« Reply #6 on: Oct 7th, 2006, 10:41am » |
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on Oct 7th, 2006, 6:48am, Jaroon45 wrote:| Does this cocktail also help you getting more 'stable' mood wise etc.? |
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The only way I could answer that is to ask you a question.......If 80% of your headaches never even showed up how would your mood be?
Thats what this cocktail did for me, 80% completely gone. it dont work for everyone, but it is worth a shot.....what do you have to lose, pain? 
Oh, and you dont have to be 70 for the HA's to stop. after 31 years chronic mine stopped a year and a half ago.......im 44 years old. dont know if they will come back but I am having a hell of a break.
Good luck!!
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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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thebbz
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Re: Depression/confidence and CH
« Reply #7 on: Oct 7th, 2006, 11:41am » |
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All the best to you. Depression is part of the condition in my opinion. Fight it same as the demon. Many different tools to use the best one is your own will. Wish I could help more. I would suggest trying all alternatives before surgery. You indicated you tried most. Keep trying and we are pulling for you.
thebbz
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Jaroon45
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Re: Depression/confidence and CH
« Reply #8 on: Oct 7th, 2006, 2:21pm » |
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Thanks a lot all of you! I do not have the time to react properly at this moment because i'm having dinner at friends house. Getting back in the morning to read things and to reply.
Thanks again!
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andrewjb
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Re: Depression/confidence and CH
« Reply #9 on: Oct 7th, 2006, 5:25pm » |
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 . welcome back, hope you had a great weekend. have a long slow read around <clusterbuster.com> and <MAPS. org> PFwishes.andrew.
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Jaroon45
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Re: Depression/confidence and CHKcopelin
« Reply #10 on: Oct 8th, 2006, 3:09am » |
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Kcopelin
The ‘tress’ of not being able to work for such a long time is indeed a factor as well. I know i am the same person but it does not feel like it. I am much more aggressive then I used to be. I am short tempered. + the thing I have mentioned above.
Surgery. At one point also my neurology did not know what kind of medicine to give me anymore. I used lithium before….then it did not help. Maybe together with verapamil it does. The operation was a rare chance. I got a place in a trial. Occipital nerve stimulation is not a dangerous operation like deep brain stimulation. But anyway…..the trial stopped because it did not work well enough.
Eyepopper
Yes it helps a lot! Just to know there are people experiencing the same gives you the feeling you are not the only ‘crazy’ person around.
Good you started working again! And great you have found an employer who accepted the fact you are ‘ill’. For two times now I’ve been to job agencies in Amsterdam…..also being upfront about CH and my past. I clearly explained my drive to succeed and my commitment to the (any) job. NOBODY has called me again. I look okay, I have a good CV. I am easy in making contact/working with people. I did not ask for high demanding jobs. Still no interest from their side. Now I am ‘forced’ to lie about the last few years and having CH. That worries me a bit as well.
So what happened with you after starting this job? Did you get more attacks? Do you feel that a bit of brain is coming back?
I try to be positive. Maybe the thing at this moment is also that for the first time I really can see what CH will do to me and my career/life. I still do not accept this. And I will have to work on that.
Johny
You are correct.
Yeah. I am growing a bit fond of the pain. If it does not hit me 1 day I am growing worried….. J
31 years of CH……that is a long long time. I hope for you it will stay that way. I know sometimes it happens. My neurology told me that mostly around 65/70 CH will disappear. But……my mother (episodic CH) of 75 is still getting hit sometimes.
Thebbz
This depression is maybe something I have denied having for some time. Now I am ready to fight it. Alternatives. I have tried: almost all the kind of medicine (not in ALL combinations) mentioned on this forum. Natural (?) doctors, burn nerve behind my nose with a hot tipped needle (forgot the name….hell of a treatment) , acupuncture, special massages, Chinese doctor, a guy (famous in Holland) getting to ‘reset’ my neck, etc.
If they would offer me a deep brain stimulation operation tomorrow I would go for it….the only thing holding me back at this moment is my mother of 75 years old. If the operation would really go wrong…..she will not be able to take that.
Andrewjb
Thanks for the links. I’ve tried some of those things. It is VERY easy in Holland (mostly legal) to get hold of them. But I am not so into stuff like that. With marijuana I noticed that after using it for a while that I was walking around ‘all’ day with a cloud in my head. Yes, it helped me getting to sleep easier……but the attacks still came in full force. Clusterbuster…..i thought that was about the kind of pepper spray by the way?
To all of you. Thanks a great deal!
I’ve been looking around on this forum before but I never really thought about looking for support here. Mostly looking for new alternatives medicine wise. But it is good to ‘talk’ with people who know hat you talk about. You don’t have to explain what CH is and most things described are recognised by others. Next to this I have less to complain then some others. Imitrex/imigran has been ‘given’ to me unlimited by my neurolog. I know that in some other parts in the world (also US) many have to pay for those injections themselves…….i would have been TOTALLY bankrupt by now.
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BB
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Re: Depression/confidence and CH
« Reply #11 on: Oct 8th, 2006, 3:31am » |
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Hi,
Just a little concern, do you have any friends/family who can support you emotionally and mentally?
Sounds like you have no one and on top of that have to care for your elderly mother.
Understanding and emotional support are most vital in rebuidling confidence and in fighting depression.
This is the best place to get such support, take it , as much as you need. Never hesitate to ask. Love here comes abundantly.
Take care and painfree wishes to you.
Annette
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sandie99
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Re: Depression/confidence and CH
« Reply #12 on: Oct 8th, 2006, 1:41pm » |
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Ch is a master what comes to getting to your confidence. I know very well what cluster depression is, too. 
I hope that you know that whenever you need someone to talk to about how you feel and vent about ch, this site is the place. Here's always people who will understand and who have been there themselves.
Best wishes & PF time,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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Jaroon45
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Re: Depression/confidence and CH
« Reply #13 on: Oct 9th, 2006, 2:10pm » |
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on Oct 8th, 2006, 3:31am, BB wrote:
Hi,
Just a little concern, do you have any friends/family who can support you emotionally and mentally?
Sounds like you have no one and on top of that have to care for your elderly mother.
Understanding and emotional support are most vital in rebuidling confidence and in fighting depression.
This is the best place to get such support, take it , as much as you need. Never hesitate to ask. Love here comes abundantly.
Take care and painfree wishes to you.
Annette |
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Most of my family is living outside of Holland but i do get support. I do not have to take care of my mother but because i am living in Holland at the moment i do have to watch out for her a bit.
The thing is, and i think for most of us, that even the people close to you so many times STILL do not understand what CH Is about. After a few years it is a bit like "oh, come on! Still the same story." This illness costed me a longterm relationship recently. My girlfriend did see my pain but could not handle the difference in lifestyle (Me not working, me being grumpy, less money........and no real hope for big changes in the near future). Maybe that is the main reason for looking for support at this moment.
Thanks a lot for your kindness.
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