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Title: I hear his voice, even when it's not there... Post by soworried on Aug 31st, 2002, 9:24pm My dad is a chronic CH sufferer. We are, always have been and always will be very very close. He is 60 and has had them since he was 20. Only he was in remission for 20 years so I never really knew or remembered them. Well, he started back up a month ago and has been in 3 ER's, a hospital stay for 8 days and tried every medicine known to mankind. Currently, Lithium is the saviour of the day. The medicines work for two days and then bam. My dad has been to this site with me and has been coping better. He also has the H2O which works sometimes and doesn't others. I have never seen my dad like this and it is killing me. I wish to God I could take the pain away from him. We are considering the occipital nerve decompression if things don't get any better real soon. My problem is that I work full time and go to school full time and since my dad is not working and my mom sometimes is, I have to work all I can to help pay the bills which is the least I can do. My mom is up at night coaching him. On a bad night, he has anywhere from 5-10 headaches. Even when he is not having an attack, I sometimes hear him crying or moaning or pacing. I check on him like 20 times a night and my mom and dad keep telling me to go to bed but I will wake up from a deep sleep and think I hear him. Does anyone else have this problem and how can we cope? We were thinking about taking him to the Diamond Headache Clinic because he can't go on like this. This is the worst thing in the world and I pray for all sufferers and supporters. Thanks. Jen. |
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Title: Re: I hear his voice, even when it's not there... Post by BobG on Sep 1st, 2002, 2:03am Hello Jen. Thank you for being a supporter for your father. Sorry to hear the headaches have returned. You say he had a remission period of 20 years........that is long enough that he may be out of touch about the latest treatments for this condition. Does he have a regular doctor and does the doctor know anything about cluster headaches? Has he been to a neurologist. Has he had a CAT scan or MRI? The Diamond Clinic is one of the best places for treatment of cluster headaches. Try to get him there as soon as possible. Please come back and ley us know. |
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Title: Re: I hear his voice, even when it's not there... Post by soworried on Sep 1st, 2002, 10:27am Thanks for the reply, Yes he has been under the care of a neurologist who knows about CH and has tried almost every medicine out there. They typically tend to last about a day or two and then the CH come back. We are thinking about occipital nerve decompression. Any suggestions? |
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Title: Re: I hear his voice, even when it's not there... Post by Margi on Sep 1st, 2002, 3:03pm Hi Jen, sorry to hear your family is experiencing this. it's never easy and supporters go through almost as much sleep deprivation as the sufferers do. we do listen for them and hear them moaning in their sleep. no way to avoid that, i'm afraid. supporter's ears. :( As to the occipital nerve compression? it sounds gruesome. please encourage him to try every alternative before he resorts to surgery or procedures that are invasive, ok? Has he tried oxygen as an abortive? would he check out the mushroom therapy? has his doc tried COMBINING lithium with verapamil? (that's a popular combination that actually has had some success with our group. ) Hang in there, kiddo - you're not alone with this. We're here to help. Read everything you can in the buttons to the left. Lots of good info there! added: oh, and he's not officially 'chronic' until he goes 12 months and doesn't have more than 14 consecutive (and unmedicated) pain free days. it sounds like he's episodic with blessedly long remissions. let's hope this cycle is very short. Hugs |
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