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Topic: Tell us something about your SUFFERER (Read 7674 times) |
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synergy2120
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Re: Tell us something about your SUFFERER
« Reply #125 on: Aug 6th, 2004, 9:57am » |
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 Hello everbody,
Im a newbie to the site and i come on here for me and my partner marc.
My partner Marc used to suffer from episodic CH but now, 3 years later, he has been diagnosed with Chronic CH. He gets between 3-6 attacks a day.
He is on verapamil which doesnt seem to do anything but whenever he tries to lower the dose the beast attacks stronger. He has just been started on Dothepin to try and help with the depression side and we have O2 as it can help once in a blue moon!
Me and marc have been together for 2 years and have a little girl called Emma who is 6 months old and loves her daddy very much.
Marc struggles everyday to keep going and being honest i struggle a lot to keep him going. i love marc so much and as you all understand it is heartbreaking to see them in so much pain and to feel so helpless.
We are going to see Dr Goadsby soon in London to see if he can start marc on new meds.
I would just like to add a hugh thankyou for setting up this website as i think i would go insane without it 
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Jackie
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Re: Tell us something about your SUFFERER
« Reply #126 on: Aug 7th, 2004, 3:45pm » |
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Hi synergy......welcome!
Please keep us posted. Seeing Dr. Goadsby is great. Hope you all get some relief soon.
Jacks 
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Teri_K
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Re: Tell us something about your SUFFERER
« Reply #127 on: Aug 9th, 2004, 8:40pm » |
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i know it has taken me a while to get on here and say hi..........so hi....i met some of you at convention. and it was great to meet you.
My name is teri..........I am Steve's/KOPs supporter. When we met he told me about his headaches, and i thought ok so he gets bad headaches, he tried to explain and i said ok, he asked me to come to this site and read about his headaches. i did and that opened my eyes. i guess i can't say that i totally understand what he goes through, but i know i will be there for him when he needs it. i just hope that i can be as good a supporter as you all seem to be to your sufferers.
Teri
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donjonrn61
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Re: Tell us something about your SUFFERER
« Reply #128 on: Aug 13th, 2004, 11:35am » |
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My name is Donna and my husband, Phil, has been suffering with episodic clusters since his early twenties...twenty years now. He is in the midst of his longest round right now, having lasted about 6 weeks at this time. They have been hitting him a few hours after he goes to sleep, but yesterday he had 5 in 10 hours.
He was started on Verapamil about two weeks ago and thought it was making the attacks less vicious until yesterday. He uses O2 during the attacks and was started on three days of Axert once a day yesterday.
He said when he started in with them twenty years ago he had a CT to make sure this wasn't all caused by a tumor or something. They put him on beta blockers, narcotics, and Cafergot back then, but nothing worked. He says the attacks used to be so painful but short in duration that there was no point in taking the narcotics. Now, if he doesn't get on the oxygen right away, the attacks can last for up to two hours.
He works nights at the hospital and is also a student. We have 7 children between us, the youngest being a 16 year old migraine sufferer, and four grandchildren. We've been married 8 years and he's a wonderful husband.
We've spent most of our marriage trying to get help for my hemiplegic migraines, which proved to be quite an uphill battle. Finally I'm off disability and back to work, and now he's suffering.
I post on a migraine site and was glad to find this site specific to clusters. I've already learned a few things that might ease his struggle, like icing the O2 line. We'll give it a try.
Thanks for this site and starting this thread. I'll check in here often. - Donna
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Woobie
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Re: Tell us something about your SUFFERER
« Reply #129 on: Jan 26th, 2005, 2:41am » |
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bump
i like this thread.... 
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WifeofCHSuffer
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Re: Tell us something about your SUFFERER
« Reply #130 on: Jan 27th, 2005, 1:06pm » |
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I am the wife of a CH suffer. My husband Tim got a bad cycle last March that freaked myself and our then 3 year old son out. I took him to a clinc thinking it was a bad sinus infection due to the symptoms. My husband was basically patted on the head, given antibiotics and sent home. On the way home he was pounding his fee in the floor holding his head and crying uncontrollably. Thank God my parents live 6 blocks from us and we were able to drop him off over there. I would not want him to see daddy in pain. The next day things were not better, Tim went to his regular doc and told them what happened, the doc knew about CH and told him that is what he had and in one week he was in to see the Neuro. He was on predisone, topomax, veraphmil, relpax, and a few others plus O2. We are not sure what did work but the pred, topomax and verap stopped the cycle finally. O2 did not help because he was prescribed the nasal. Just found out the other day that was not the right way for it to be administered.
I have become Tim’s advocate, he forgets to ask questions and ask the what ifs about everything so I go with him to the appointments now, I think it is because of the Topomax (dope a max) he is on that he can’t think clearly. He is suppose to go in on 2/16 for a follow up and I will be attending. After being on the site for a few days I have a million questions for the Neuro. I like the guy he seems to be very good and has taken the time to help us understand what is going on and what to expect. Tim is a chronic CH and migraine suffer. It sucks!
Tim hates the fact that these headaches are in our life and feels awful that I have to take care of him and our son and be pregnant at the same time. Personally I can’t care, we have a challenge and we will work through it together. He feels bad that we can not have sex because he has found that while in a cycle physical activity makes his headaches worse. Again could not care less I would rather him be pain free than have sex. We have been together for 17 years and married for 10.
I notice when the pain is building he is very short with everyone and everything. I try and get him to take his abortive Relpax but he only wants that when it is really bad, the rebound headaches he says are worse. So he tries and stick it out for a while. I think he is crazy but whatever works.
I worry that these headaches are doing a great deal of damage to his body, his heart, brain and circulatory system. I am not sure if I am needlessly worrying about something but it can not be good for the body at all. So it is on my list of questions to ask the Neuro in a few weeks.
That is our story and we are hoping like heck that these headaches will not affect our son or our unborn baby either. He does not want anyone else to suffer through these.
Cathy
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Margi
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Re: Tell us something about your SUFFERER
« Reply #131 on: Jan 27th, 2005, 1:12pm » |
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he's not chronic, Cathy, not if the pain went away after the meds last March.
It sounds like he's in his second cycle.
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WifeofCHSuffer
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Re: Tell us something about your SUFFERER
« Reply #132 on: Jan 27th, 2005, 3:45pm » |
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He has not been strictly pain free for any length of time, he went from CH to migraines and has not stopped. He only has a few days sometimes weeks where he is painfree.
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Jeepgun
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Re: Tell us something about your SUFFERER
« Reply #133 on: Mar 3rd, 2005, 10:54am » |
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Hello, everyone. Your stories have made me cry... My wife will not come here and post, so I will tell you about her, instead. I hope that this is okay....
We've been married for thirteen years, and I've had episodic CH for eight. I do my best to hide them from her, but she knows, and when I'm getting hit, I see the pain in her eyes... She wants so badly to help, to do something, anything, to take away this pain.
In the middle of the night, when I'm getting hit, I'll slip out of bed as quietly as I can, but she always awakens and asks, "You're getting hit, aren't you?" And as I'm making my way across the room, so I can go out to the living room, I say, "Yeah, baby. It's okay... Go back to sleep."
Most of the time, after the hit is finished, I crawl back into bed to find that she's been lying awake and waiting, and her voice is husky from crying. In an ironic twist, I find that I want to take away HER pain!
I find myself trying to hide it from her when I'm being hit...
Probably the worst one was on our 12th anniversary. We had booked a reservation at a really nice Italian restaurant and had just placed our order when I felt a CH coming on. At that point, I still had no idea what these things were, and stumbled out of the restaurant, and began going from one business in the plaza, to another, to see if someone could give me an aspirin. (Not that it helped at all, but the half hour I spent walking around gave the headache time to finally fade away) Anniversary ruined... CH just breaks my heart, breaks her heart... Even as much as we try to keep it marginalized and avoid letting it take over our lives.
I've spent this morning reading this thread.... I've been weepy and misty-eyed with reading your stories... Your courage, your love, your sheer guts and dedication... I am overcome. I am simply overcome, and I am crying for all of you... Thank you. Thank you. Thank you...
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thesufferer
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Re: Tell us something about your SUFFERER
« Reply #134 on: Mar 14th, 2005, 9:48pm » |
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Of all the messages I read there is one constant word! Pain!!! We all tried different remedies and here is what I do. It is not always effective but at times it helps me control myself without losing control.
1. Cold water on my head periodocally
2. A towel on top of my head and rub my wet hair back and forth.
3. A nice dark place!
4. A vaporizer to breath in while doing the above!
5. To be by myself!
My name is Curtis and I have been suffering from cluster headaches since 1982 and was diagnosed with the problem in 1996. Nothin is easy and hopefully one day a cure will be found. My best treatment is Imitrex Injections. I know the pain but keep rocking on!!!
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Zephrah
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Re: Tell us something about your SUFFERER
« Reply #135 on: Apr 12th, 2005, 1:25pm » |
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 Hello Everyone! i'm a new supporter and I thought i'd post to this thread. I've lived with Celtspirit for a couple of months now and he has been going thru a cycle for about the past month. This is a new experience for me but i'm up to the challenge. (What doesn't kill us makes us stronger, right?!?) At first when he started the new cycle I didn't know he was having them because he would be very quiet at night. He's now on his 3rd round of prednisone, which makes him short tempered at full dosage but he gets relief until the dosage drops again. I'm fortunate that i'm not working right now and can help him deal with this, along with the other variables that we all have in our lives. I've been doing some online research trying to concentrate on the arteries and nerves that are affected, since just about every sufferer seems to get some relief from applying pressure to arteries or nerves. I know that the research is in its infancy, most of it seems to involve relieving the pain instead of preventing it. Please let me know if you have any input. Thanks! 
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Margi
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Re: Tell us something about your SUFFERER
« Reply #136 on: Apr 12th, 2005, 1:39pm » |
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Hi Zephera,
Well, research really isn't in its infancy anymore, thanks to doctors like Goadsby, etc. and these websites. There is tons of information out there now about clusters.
As to applying artery/vein pressure, please be very careful with that method of aborting attacks. Unless you're professionally trained in that area, it can be very dangerous and can cause a sufferer to lose consciousness.
Oxygen is a wonderful abortive, and there are many chemical meds out there that do the same thing. Natural treatments include shrooms, kudzu, water, ice - all things to try if your sufferer is otherwise med-free. Not great to try if he is on meds though.
Prednisone, while it may be effective to break a cycle, is horrible stuff. My husband did it once and never again. He is currently using the lithium pulsing method and it worked well for the first two months of his cycle. We are nearing the end of month four here and he's having some pretty serious breakthroughs now. Thank God for oxygen and imitrex!
Hang in there - read everything you can and educate yourself. Check out the OUCH website and visit the library there - amazing compilation of information right there at your fingertips!!
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E-Double
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Re: Tell us something about your SUFFERER
« Reply #137 on: Apr 12th, 2005, 1:45pm » |
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Welcome and wishing you BOTH relief!!!
I sure as hell don't know what WE would do without you supporters....For that I personally thank you and all the other "angels" out there!!!
Here is a great resource to know like the back of your hand
http://www.brightok.net/~mnjday/chtherapy.pdf
It will present the appropriate treatments that you should seek and your doctor should know!!! Print it out and give it to doctor to memorize!!!
Demand Oxygen for your house and for travel (can get different size tanks) read and print this out!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
If he does have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.
With the exception of 5-6 times.....I have slept through the night since August.....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.
Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...
The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall.
It may help and it is natural with not too many side-effects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....
Like I said we are all different.
Best wishes to both of you, good luck, stay as positive as you can and thanks once again!!!!
Eric
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Zephrah
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Re: Tell us something about your SUFFERER
« Reply #138 on: Apr 12th, 2005, 2:18pm » |
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Hello again! thank you for the replies. He uses Imitrex (injections) whenever they become intolerable because he can't stand the rebounds from it, he already uses the imitrex tip from the home page, I asked him about that yesterday. He has prescriptions for a bunch of other stuff (covera)but his first course of treatment is an ice pack on his head, 200mg ibuprofen x5 and an Actifed. We just got the O2 tank in today and I can't wait to see if it helps him out. They must have reached a peak yesterday, they had shifted to an irregular schedule and were occuring during the day so that got him home from work at 9:30 am yesterday. Today seems much better for him. I'd estimate hes having between 5-10 headaches per day, varying in severity, but the shadows linger. I know he got some sleep last nightand he seems to be doing well today, so again, i'm hoping that yesterday was a peak to the cycle. He had been prescribed lithium a long time ago and hates the stuff. I had asked him about melatonin long ago when he first told me about his headaches because they seem on coincide with seasonal and daily sunlight changes. He had been using shrooms as a preventative and we both just recently heard about Kudzu. He hadn't been keeping up on any research for a while, I know it can get depressing and seem hopeless, so I try to keep informed myself, which in turn motivates him. Thank you for the links and all the help you give to everyone here! We both hope to meet some of you at the convention this year! 
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Dianne too
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Re: Tell us something about your SUFFERER
« Reply #139 on: Apr 28th, 2005, 6:32pm » |
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Hi! And thank you to all for being here on this site.
I am a newcomer and have just experienced my first day of caring for Michael (my partner/lover/whatever you want to call him) while he went through seven Kip 10s in a row.
We have been together for more than a year, but he has been in remission, so I only knew to hear him talk about the CHs. But he's been in a cycle for about a month now, and I went online right away and found this site.
The information I have learned here has helped, especially since I am the kind of person who always wants to DO something. I learned here that there is nothing I can do, except be there and make sure the meds are close by. I've also learned to make him drink as much water as possible . . . we'll see.
Anyway, yesterday was terrifying . . . I know I don't have to describe how it feels to see the person you love more than anything screaming in pain and knowing you can't do anything about it.
Today (knock wood) has been tolerable so far . . .
Thanks again for all the good information and for being there are 2 a.m. on the laptop!
Dianne
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Margi
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Re: Tell us something about your SUFFERER
« Reply #140 on: Apr 28th, 2005, 8:18pm » |
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seven Kip 10's?
in a row?
are you sure this is cluster you're dealing with and not CPH? Same/similar pain, much shorter duration.
How long is each attack lasting?
What meds or abortive methods is he using?
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Dianne too
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Re: Tell us something about your SUFFERER
« Reply #141 on: Apr 29th, 2005, 8:43am » |
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Margi:
Thanks for your concern! I immediately went to look up CPH but no, they are clusters.
The first one hit at 5:30 a.m. The second came at 2:30 p.m. and ramped to a 10 almost immediately. The third one came at 5:30 p.m. and then they came every two hours.
Michael finally passed out from exhaustion and woke yesterday with perhaps a 3 or 4, which dulled over the course of the day.
He uses Imitrex nasal spray and shots, which work, but seem to take forever . . . the spray usually takes 18-24 minutes to work and the shots take 7-11 minutes to work. By the end of the brutal cycle on Wednesday, I think he had taken more than 60 mgs of Imitrex in less than 24 hours. God only knows what that did to the severity of the headaches.
Thanks for giving me a place to talk about this!
Dianne
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lionsound
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Re: Tell us something about your SUFFERER
« Reply #142 on: Apr 29th, 2005, 9:41am » |
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Hi Dianne,
Quote:| I think he had taken more than 60 mgs of Imitrex in less than 24 hours. God only knows what that did to the severity of the headaches. |
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God only knows what that could to to HIM, let alone the HA's. Dianne....I could be totally wrong here, but that sounds like way too much imitrex to me. Is Michael currently seeing a neurologist? You might want to check with his doc about that. It very well could also be causing rebounds at this point and be physically dangerous to him if he has other physical conditions.
PLEASE get this checked out. And remember not to mix different types of triptans(imitrex,zomig, maxalt. frova, etc) within 24 hours of each other
You are a fabulous supporter and Michael is very fortunate to have you!
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Margi
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Re: Tell us something about your SUFFERER
« Reply #143 on: Apr 29th, 2005, 9:53am » |
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Lionsound's exactly right here, Dianne - that's VERY dangerous to be taking that much Imitrex! NO MORE than two sprays OR shots a day! Imitrex is a vasoconstrictor, meaning it slows down or shuts down blood flow. There is a story of a guy here who took 6 imitrex in a day (I'm not sure what format) and he ended up in ER because he had shut down the blood flow to his stomach.
Not only that, it honestly DOES cause more attacks. Not rebounds, just increases the frequency. My husband (also a Michael) has learned this the hard way. That could very well be why your Michael got so many hits in one day.
Please please PLEASE see about getting him some oxygen! Not only is it a much safer abortive, very effective, but it will also force him to stay calmer while he sits there and breathes it. Please read up on it and see if you can somehow get him some a.s.a.p.
Imitrex is SO hard on the cardiovascular system, Dianne - please talk to him about the overuse of it?
So sorry to hear you're both battling the beast - hang in there, you're not alone with it.
Hugs,
Margi
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Linda_Howell
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Re: Tell us something about your SUFFERER
« Reply #144 on: Apr 29th, 2005, 10:29am » |
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Dianne,
I've just got to add my warning here as well. If for no other reason than to push home to you how dangerous this is.
60 milligrams of Imitrex is unacceptable levels for even a Sumo wrestler. Please get him to listen (when he's not having an attack) and explain this to him.
Linda
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Re: Tell us something about your SUFFERER
« Reply #145 on: Apr 29th, 2005, 2:41pm » |
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Thank you all so much for your concern! I know it's too much and (knock wood) he hasn't had a headache now for almost 36 hours. Instead, he's running 101 fever and is just miserable. Does it never end?
As long as I am writing . . . we're moving in less than three weeks, we're about to spend a rainy weekend in a one-bedroom apartment stuffed with boxes, two toddlers (boys) and three wet, extra-large, shedding dogs. Not to mention a very sick Michael.
We're going to try the suggestion of opening the Imitrex and injecting a half or a third of it each time manually and see how that works.
Thanks again all of you . . . did I mention Michael has no insurance and we paying for all the doctors and the drugs out-of-pocket?
Dianne
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lionsound
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Re: Tell us something about your SUFFERER
« Reply #146 on: Apr 29th, 2005, 3:21pm » |
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Dianne, If you don't have insurance you might be able to get O2 from a welder's shop ...will cost you much less than all that trex he shouldn't be taking.
If he's that sick, could you take him to a clinic or something?...the HA/sick combo may need to be looked at if it's not normal for him. It may not be wise to pile trex on top of the sick.
I'm sorry you and Michael are having such a rought time of it.
be well,
lionsound
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| « Last Edit: Apr 29th, 2005, 3:21pm by lionsound » |
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estelle19
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Re: Tell us something about your SUFFERER
« Reply #147 on: May 27th, 2005, 1:22am » |
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Hi,
It's my first post here so let me just introduce myself... I'm Estelle, and my father suffers from c.h... He's 50 and he's been a sufferer since the age of 19... I think the longest it went away was 5 years, but when it came back, it hit him much harder...
In the past 4 years it's gotten a lot worst; Ive moved out over time, but I still go crazy everytime I'm there and he's walking around bashing his head on the walls, and everytime I'm left asking myself how he does it; how he's still here after all these years of chaos and pain.
Lately he's been taking a lot of Imitrex, which calms him down, but it just always seems to come back no matter what...
any way, I'm really glad I found this site.. like many of you have already mentioned, I'm glad to know I'm not alone in this situation!!!
good vibes to everyone  ,
Estelle
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Re: Tell us something about your SUFFERER
« Reply #148 on: May 29th, 2005, 11:09am » |
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Hi Estelle, welcome and thank you for being a supporter for your dad. I'm a sufferer, too and we all appreciate good supporters. Have you mentioned this site to him? He may get some very helpful info here. As for you, be sure to take care of yourself, OK? hugs, nani
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Margi
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Re: Tell us something about your SUFFERER
« Reply #149 on: May 31st, 2005, 10:43am » |
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Hi Estelle,
Being a supporter is so hard, isn't it? My husband is a sufferer and it's hard enough to deal with the helpless feeling, but seeing your parent - your protector - go through this must be awful. 
You say your dad is taking a lot of imitrex....how much? Too much is very bad for him. Has he tried oxygen? It's a good abortive, too, and much easier on the body.
I see you're from Montreal - we have a Canadian cluster site now and quite a few sufferers in your area. We have a message board just like this one, so please feel free to check us out at http:/www.clusterheadaches.ca and please also invite your dad. It really helps them to know that they're not alone with this pain. We can probably also recommend a good doctor for him in Montreal.
Hang in there, Estelle - you're not alone with your pain either, ok?
Hugs
Margi
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