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Topic: Is my fiancee chronic or episodic? (Read 714 times) |
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Pethog
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Is my fiancee chronic or episodic?
« on: Sep 14th, 2006, 2:10am » |
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First of all, this website is a godsend! It's so nice that there are other people who understand what sufferers and their supporters go through. I am sick of the blank stares my co-workers and friends give me when I tell them Pete had another bad night.
Here's our story. . . I met my honey a year ago at work. He is my boss. (Well, actually my boss's boss.) He is from Dublin, Ireland with a larger than life personality. Doesn't know a stranger and doesn't have any enemies. Everybody loves Pete. He started getting these CHs around the same time I started my job (last Sept.). They first started coming on a couple times a week, then increased to almost everyday last December. He missed almost the whole month of work that month. In January, he started going to a pain specialist who would stick needles up through nose and kill the nerves behind his eye. This helped a bit, but not too much. That's when we fell in love. I offered to take him to his "procedures" and the rest was history. So in a way, we're grateful because the CHs brought us together.
At first, I really didn't understand the pain. When they came on, I'd take it personally when he didn't want to talk or pushed me away or asked me to leave him alone in the dark. Then when day, I got a migraine. It was a godsend! I got it!!!!! You don't want anything but for the pain to go away. You don't want Brad Pitt. . . you don't want chocolate. . . you don't want to win the lottery. . you just want the pain to go away and some rest.
His CHs then seemed to ease up for a while, like maybe every other day or so, but it was bearable. In April, he went 10 days without one at all. That was heaven!! We thought we were out of the woods. But they came back with a vengenace in May and have seemed to increase in amount per day, intensity, and duration. There have been times he's laid his head in my lap and sobbed. It breaks my heart. We saw a doc who put him on Zomig (he can't have any of the triptans due to a heart condition). That worked for like 4 days, but that's it. Then he was on something else (can't remember. . . maybe Topiramate??) that didn't touch it at all. We went to the Mayo Clinic last week and they gave him a shot of steroids in the back of the skull along with Verapamil, Oxygen and Prednisone to take home and start the next day. Within 15 minutes I saw my old boyfriend again. . . joking with the nurses, making friends and making plans for the future. But the demons came back 48hrs later and haven't left. The doc increased his dose of Verapamil, but it doesn't seem to help. Last night was bad. It was the first time I cried along with him because I couldn't stand to see him like this a second longer. For such a social, extroverted person, I can see it's taken it's toll and I know depression is starting to set in. He said yesterday morning he didn't kow if he had any fight left in him anymore. He's constantly around a Kip 5-6, peaking to a 10 about 4 times a day for about 45 minutes at a time. The people at work don't understand. They are frustrated because he's not there to run things so they end up getting mad at him. "Why isn't he getting mad and doing something about these headaches?" "He should just wake up and decide he's not going to have these headaches anymore!" Ignorant arses.
My question (after making a short story long) is. . . how do we know if it's chronic or if it's episodic? It's been almost a year now with only a ten day reprieve. I just don't know how much longer he can take going like this.
Any and all info is greatly appreciated.
Thanks so much,
Erin
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Margi
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Re: Is my fiancee chronic or episodic?
« Reply #1 on: Sep 14th, 2006, 10:09am » |
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Hi Erin and, sadly, welcome. Your story is all too familiar. 
First, I'd say he's almost chronic, or will be once a full year has passed without more than a 14 day break from the pain, that's the "official" definition of chronic.
What dose of verapamil is he on? It can sometimes take up to two weeks to fully establish in the system before you see any results. The prednisone should be breaking the pain for him in the interim. What delivery method for the oxygen? High flow rate through a non-rebreather mask? Is it aborting for him?
You say he can't take triptans because of his heart....Zomig is a triptan (Zolmatriptan). What form is he using? Pills? Rapidmelts? Spray? Is IT aborting for him? Is he having any chest pains from it?
Has he tried melatonin to help him sleep? Or benadryl OR dramamine. They all help and, honestly, sleep deprivation is probably the worst part of cluster. If a sufferer can find some sleep, it makes things SO much easier to deal with and really can help their courage levels. When you're sleep deprived, everything is SO much worse.
Keep talking, Erin - it's therapeutic for you as well. And get him on here, too. Salve to the soul for a clusterhead to be able to talk to others who have felt his pain.
Hang in there, lady - you sound like you're doing a wonderful job of supporting.
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Garys_Girl
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Re: Is my fiancee chronic or episodic? &nbs
« Reply #2 on: Sep 14th, 2006, 5:01pm » |
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Erin, I'm so glad you found this site! It was a godsend for my hubby and me. Even after finding it, we got to the point where Gary wanted to give up too. He also had many intense attacks for long periods of time with no let up. We bought some "oxylite" bottles of oxygen - good for about 15 or 20 minutes at high flow rates. He carried two of them in a backback wherever we went. Until the O2 started giving him rebound headaches instead of aborting the original attack. But if the O2 is working, talk to your medical products distributor to find out about the carryable bottles. It was the only way we got into work at all.
We handed out this letter to those affected at work:
http://www.ouch-us.org/chgeneral/colleagueletter.htm
Of course, only those few who witnessed an attack actually understood, but it still helped a lot.
Caffeine was a great abortive for Gary. He got up to 25 double espressos a day - which of course ended up shredding his GI system, so I don't recommend he let it go that far. Gary built up a tolerance to it pretty quickly. If would have just given it a rest for a couple of days every couple of days, maybe that would have worked. But he's paying for it with a series of GI surgeries now.
Kudzu was the first thing from this site that we tried. It worked to an extent - in that it reduced the frequency and intensity of attacks. That in and of itself was a good relief. Gary had to take Melatonin at 18mg to be effective. If your fiancee is taking no triptans, no opiates, no anti-anxiety meds and no anti-depressants, he can also try taking 5-HTP (or L-5-HTP) with the melatonin. Hubby took 200mg, and this guaranteed at least several hours of sleep.
Before trying the melatonin, he was literally going insane from lack of sleep. He was also scared to go to sleep. It becomes a vicious circle sometimes.
I don't know how you feel about highly alternative methods, but a recently published Harvard study (in Neurology, a peer review magazine - published in February) indicated very promising results by treating clusters with psilocybin or LSD at subhallucinogenic levels:
* 22 (85%) who had used psilocybin reported that it had aborted attacks.
* 25 (52%) of the psilocybin users and 7 (88%) of 8 LSD users reported termination of at least one cluster period.
* 18 (95%) of 19 psilocybin users and 4 (80%) of 5 LSD users reported extension of their remission periods.
* 22 (42%) psilocybin users and 2 (22%) LSD users found therapeutic effects with sub-hallucinogenic doses.
* In secondary analysis, 76 (52%) respondents reported that psilocybin terminated at least one cluster period.
Here's a link to a summary: http://headaches.about.com/od/clusterheadaches/a/mushrooms_lsd.htm?terms =psilocybin+in%20treatment%20of%20cluster%20headaches
When you see people writing about "seeds" on this site, they're referring to LSA, usually in the form of Rivea Corymbosa ("RC" seeds) which is another type of hallucinogen, and it's often used in conjunction with psilocybin mushrooms, though many people have had success with just the seeds. You can read up on these options at www.clusterbusters.com
When you get to the "giving up" point, no matter how you feel about illegal drugs, the success rate of magic mushrooms in treating cluster headaches is something that almost has to be considered. It doesn't have any of the health side effects of legal drugs - and the doses that are effective are at sub-hallucinogenic levels.
Just something else to look into and consider.
I'm a fan, because hubby busted his cycle with the help of the clusterbusters. I've got Gary back, and it's a miracle, as far as I'm concerned.
Most importantly - read, read, read, and ask, ask, ask!!!
Welcome. And wishing PFDAN to your fiancee!
Laurie
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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E-Double
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Re: Is my fiancee chronic or episodic?
« Reply #3 on: Sep 14th, 2006, 7:25pm » |
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Hey there and sorry but glad to meet ya.
Thank you for being there for another CHer for that is a tough job that takes aspecial person.
Chronic is defined by the IHS (international headache society) by having headache periods that have not been broken by 30 days of consecutive pain free time while on meds or not.
The definition changed a few yrs ago from the 14 days wiith no meds.
It matters not, I am chronic and was episodic for many years. Life is what you make it regardless just like anyone else.
Make sure to take care of yourself and never take any shit b/c even the sweetest of us can dish it out when in pain.
Hugs!
Eric
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Pethog
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Re: Is my fiancee chronic or episodic?
« Reply #4 on: Sep 16th, 2006, 2:54am » |
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Thank you all so much for all of the info and support! It's really nice to hear from people who really know what we go through!!!
Margi, he is on 160mg of Verapamil in the morning, 80mg during lunch and 160mg in the evening. Doesn't seem to be doing much, but we keep at it. Nothing aborts his CHs. Oxygen seems to relieve it most, tho. It stops it from getting to a full Kip10. He was on Zomig a while ago, but they stopped working after the first week. He has tried 9mg of Melatonin to sleep, but it doesn't seem to make him sleepy at all. I agree with you, the sleep deprivation is the worst for him. Last night he was awake all night, but only had one attack. I was so happy to share his company, I stayed up with. Needless to say, I've been dragging all day.We tried Kudzu and it seemed to lessen the pain and duration of an attack, but not abort it completely.
Gary's Girl. . . LSD?? Holy crap. I wonder who thought of that to help with CHs? He is trying to get his US citizenship so we have to be careful about that, but when he is in a full blown CH, I'd do just about anything for him. I called a friend in the middle of the night last Tuesday because I knew he had sleeping pills. God love him, he came over and gave Pete some. It knocked him flat on his arse! He slept for like 18 hours straight. That scared me a bit, but was glad he got some rest.
Eric, how long have you been chronic and what kind of meds work best for you?? How do you find the will to be a functioning member of society? That's what Pete is struggling with now. He's been in his "cave" for a while now. He's only left when we've gone to doctor's appointments and he's only made it into work twice in the last 4 weeks. Have you ever thought of the gamma knife therapy or any other surgical solutions?
Thank you all for being so welcoming!
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Linda_Howell
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Re: Is my fiancee chronic or episodic?
« Reply #5 on: Sep 21st, 2006, 5:44pm » |
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Erin, It's understandable that he would be afraid to try the "schrooms' but go to this link and look into him trying the seeds. It's there to the left of the page. When you read all about the seeds you will find that they are legal and you can buy them on-line, cheap. When I say legal I mean that they are legal to purchase and have in your possession....just not legal to ingest  (that makes a lot of sense huh?)
It could be that they are his magic bullet.
http://www.clusterbusters.com/
p.s. also it seems to me that the verapamil dosage he's taking isn't high enough to do much good. Others here are on MUCH higher dosages.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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