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Topic: I AM VERY VERY WORRIED........ (Read 445 times) |
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ZAIRA
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I AM VERY VERY WORRIED........
« on: Sep 9th, 2002, 1:24pm » |
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Hello everybody, I communicate you my problem hoping to hear yr. reactions soon.
Since last Friday the cluster has woken up  , I have attacks without any notice (usually
Just before the attacks my eye ached, or my nose run, etc...) and they are so strong that
I could not make the sumatriptan/imigran injection by myself.
During the attacks I loose control of my actions and when I am better I cannot remember
anything .
All this worsten the problem that I have on my right eye (which is a big one for my age 23)
doctors discovered that I have an herpes  which is destroying my cornea; but I cannot do any
corneal graft because of my age and I am having a lot of pain for this.
My neuro told me that the cause of the strong attacks with loss of control can be attributed to
LAMICTAL (anthi-epileptic for the treatment of CH), but maybe also the neuro does not know the reason for this.
I am very worried about the modification of CH during the last clusters, I cannot forsee the my reactions during an attack....... I could bang my head against the wall or the wardrobe....... it has already happened........
I have already spoken with some friends of OUCH Italia, but they got some blows consciously in order to bring relief to pain. On the other hand I do it without realizing it and in my opinion this is bad.
Should you have some advices at the basis of yr. experience to etell me, please do it because I need yr. help!!
Thank you and love from 
Zaira
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Drk^Angel
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Re: I AM VERY VERY WORRIED........
« Reply #1 on: Sep 9th, 2002, 1:36pm » |
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I'm not sure if I have any advice, but I sorta know where you're coming from. I've had a few experiences with blackouts during particularly troublesome attacks. Find myself in places I didn't remember going to, or finding in disorder (even worse than they may already be) I know it can be a very scarey experience, but unfortunately, I have never found a way to stop it. I wish I could be of greater help to you. Maybe someone else will have some advice that'll be helpful... Good luck!
PFDAN.............................. Drk^Angel
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2late
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Re: I AM VERY VERY WORRIED........
« Reply #2 on: Sep 9th, 2002, 5:23pm » |
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Zaira,i'm so sorry to hear about your probs, i too wish i had some good advice for ya, hang in there!it'll get better, good things seem to work out for good people!!  wishin' you the best!!!! ................2late
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Opus
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Re: I AM VERY VERY WORRIED........
« Reply #3 on: Sep 9th, 2002, 5:30pm » |
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Zaira, Do you mean that during a CH you move uncontolablly? Any time I have a 7 and up I cant stop moving. If I try to hold still then my legs start twiching. A lot of peaple have memory problems. some say thay have brain damage.
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nutty2chat
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Re: I AM VERY VERY WORRIED........
« Reply #4 on: Sep 9th, 2002, 8:25pm » |
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I also offer my condolences. It sounds as if you are getting more than your share. I can't say that I have any advice for you, but I can tell you this. I don't have any memory loss during an attack, but my memory is not good at other times. I have to say I attribute it to meds and being very tired. I have had cluster since I was 14 and I have never blacked out. I think I would be insisting on more testing into what else you may have going on with this cycle.
My prayers be with you,
Nutty
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eyes_afire
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Re: I AM VERY VERY WORRIED........
« Reply #5 on: Sep 9th, 2002, 8:57pm » |
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Zaira,
I don't know what to say to help. You are strong to have made it this far. I like your art. I am sending well wishes your way.
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ZAIRA
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Re: I AM VERY VERY WORRIED........
« Reply #6 on: Sep 10th, 2002, 6:42am » |
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I do not know exactly what I do, but I do not have twitching.
Ciao Zaira
on Sep 9th, 2002, 5:30pm, pjbgravely wrote:| Zaira, Do you mean that during a CH you move uncontolablly? Any time I have a 7 and up I cant stop moving. If I try to hold still then my legs start twiching. A lot of peaple have memory problems. some say thay have brain damage. |
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ZAIRA
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I AM VERY VERY WORRIED !!!
« Reply #7 on: Sep 10th, 2002, 6:44am » |
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Thank you to you all for your encoraugement and for those who sent me messages on my e-mail box.
I need your help.
Love
Zaira
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echo
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Re: I AM VERY VERY WORRIED........
« Reply #8 on: Sep 10th, 2002, 9:22am » |
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I don't have any valuable advise to give you. Hope you have relief very soon. Hang in there, you will get through this. Vent when you need to. We are here to listen and support.
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oringkid
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Re: I AM VERY VERY WORRIED........
« Reply #9 on: Sep 10th, 2002, 10:18am » |
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This is just my opinion, but I think if you are having memory blackouts with your attacks, you should probably have some tests done. Just to make sure it is not something else more serious that is causing it.
Also, if your Neuro thinks it could be the medication, perhaps you should try a different medication. I think you should probably seek medical help right away.
I am so sorry to hear you are going through such a bad time right now.
Sherry
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ZAIRA
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Re: I AM VERY VERY WORRIED........
« Reply #10 on: Sep 10th, 2002, 2:10pm » |
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The doctors have already tested me from a neuro point of view and fortunately All is OK. I AM HAPPY FOR THIS!!
Thank you for being close to me in this time, this is a relief for me...
Love, Zaira
on Sep 10th, 2002, 10:18am, oringkid wrote:This is just my opinion, but I think if you are having memory blackouts with your attacks, you should probably have some tests done. Just to make sure it is not something else more serious that is causing it.
Also, if your Neuro thinks it could be the medication, perhaps you should try a different medication. I think you should probably seek medical help right away.
I am so sorry to hear you are going through such a bad time right now.
Sherry |
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