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concerned
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FEEL SO HELPLESS
« on: Aug 9th, 2005, 11:19am » |
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My life partner, best friend and soul mate is a sufferer of eposidic CH's. We have been suffering for almost 20 years now with some remission the last two. The beast has now returned with a vengence!!! For the last 8 days he has been up all day and night screaming at the kids bitching at me and contemplating suicide. In the 20 years we have been suffering this seems to be the worst.
I have spent countless hours on the web trying to find things ANYTHING to help dispite all my efforts there seems to be nothing that we have not tried. WHY DOES NOTHING HELP????? For 8 days he has done nothing but pace the floors hold his head and moan. My younger children just can not understand what is wrong and i can not explain to them. What do you tell a 2 year old when the witness there father beating his head against the wall because it has to feel better than the pain?
The toll this is taking on me is incredible, i feel so God Dame helpless it is pissing me off. I have to work and can not stay with him to comfort which is where i want to be, i have my older children on suicide watch, the last thing i want to do is loose my life partner and soul mate to the beast within. i find myself in tears most of the time and that is not me i am a strong person, i am the one who always makes everything better, why can't it be better this time?
We have tried so may drugs i can not even remember half of them nothing works, the doctors don't understand and if a fucking doctor doesn't understand and can not fix the problem what makes me think i can? I have to, if i loose this man i will loose my whole world.
Are there any suggestions on what i can do for him to relive this mans pain, he is a kind god fearing loving man and has never done any thing so wrong that he should suffer like this. I know what doesn't kill you only makes you stonger but shit i think i am strong enough now, give us a break!!!!
i use to think that he was the only person out there with this, now I find this is not so. I am both happy and sorry to say that there are others who can understand where i am comming from. No one i know understands and now i have some where to go to ask questions and look for help. GOD BLESS YOU PEOPLE!!!!!
Any advice of help anyone could give would be greatly appreciated, we sure do need it now. 
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Margi
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Re: FEEL SO HELPLESS
« Reply #1 on: Aug 9th, 2005, 12:22pm » |
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First of all, Concerned, BIG HUGS. There are many of us here who have been right where you are right now. OK? Now, breathe.
Tell us what meds he's on (if any). Does he use anything to get him through the attacks? Has he been diagnosed to have cluster?
Most popular abortives (dealing with each individual attack):
Oxygen - must be delivered through a non-rebreather mask at a flow rate of higher than 8 litres per minute.
Imitrex - or any of the triptan drugs (Amerge, Zomig, etc.)
Ice - lay an ice bag (or bag of frozen peas) on the back of his neck, or apply it right to the pain on his eye
Cold water - lots of water.
Most common preventatives (to slowly end the cycle)
Verapamil - usually don't see much improvement until they reach more than 480 mgs a day
Lithium - sometimes combined with verapamil (rarely more than 900mgs a day for a clusterhead)
There's more, I just can't think of them right now.
Alternative treatments that some folks have found amazing success with:
Magic Mushrooms - go to www.clusterbusters.com for more info
Kudzu - there's a thread here on the meds board about it
The BEST thing you can do for him is to bring him here - let him know that HE is not alone either. It will do him a world of good to talk to others who've felt his pain too.
Lastly, if he's seriously contemplating suicide, treat this as a medical emergency and get him to a doctor (or call 911) NOW.
Keep talking, we want to help.
more hugs,
Margi
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concerned
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Re: FEEL SO HELPLESS
« Reply #2 on: Aug 9th, 2005, 2:31pm » |
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Margi
Thanks for the help
he has trie o2 with out much success, Antihistamines, Lithiulm Caronate, Propranolol, Amtriptyline, Verapamil, Methyusergide, Cyproheptadine, melitonin and Benadryl, Fish oil, melitonin, velerian root, vitiman c, st. johns wart, and large amount of white grape juice(this as a coctail was something i came up with after countless hours of resurch at the library) it help a couple of years ago but is not doing much good now. last night he tried shrooning for the first time and is still experencing pain every 20 minutes lasting about 20 to 30 minutes this is by far the worst episode in 8 years he normal gets attacks in June July and Aug. last in any where from a month to 6 weeks however he has experenced cycles in Feb and March.
Started him this moring on the water, water water hoping for releif.
i don't know if it him talking suicide or the beast within but i do know that he can not take this much longer with out releif he know that they will last aleast another 4 to 5 weeks and he is not afraid to admit he is scared. when something can take a 250 lb man to his knees crying like a baby it's really really bad. any help is desprately needed.
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Margi
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Re: FEEL SO HELPLESS
« Reply #3 on: Aug 9th, 2005, 3:20pm » |
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ok, so am I to understand he's not on any meds at all right now, though? Correct?
Next, he tried the shrooms last night - is that what you're saying? Because if that's true, it's quite common for the sufferer to notice a temporary increase in cluster activity soon after dosing. For most people, though, it does taper off and can sometimes be all that's needed to end the cycle completely - that one dose of shrooms. Just give it a couple more days to see if his hits start decreasing in frequency and intensity. Again, lots of folks have reported that they felt worse but then relatively quickly felt much better, so don't give up yet, ok? How much did he use?
If he's on any other meds at the time, though, that really can make things worse if he doses with the shrooms....not only can it make the shrooms not work, but it can also make the meds not work and then you're dealing with more than one problem.
I wouldn't flood him with water just yet though - give the shrooms a chance to work, ok? I know it's hard. Let him fight each attack with an ice bag on his neck or eye, whereever he prefers it. But try not to let him take any other meds (unless he's already on a regular dose of something else - never a good idea to quit meds cold turkey!) It's really hard to know how to advise over the internet unless we know all the details, sorry.
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
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IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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The mad viking
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Re: FEEL SO HELPLESS
« Reply #4 on: Aug 9th, 2005, 3:22pm » |
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Hi there conserned
You lissen to Margi here,you hear
She gave you a lot of good advices.
Keep us informed
Svenn
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Always Look on The Bright Side of Life
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lizzzz
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Re: FEEL SO HELPLESS
« Reply #5 on: Aug 9th, 2005, 3:25pm » |
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Hey there. I'm going through the same thing at the same time. (See: To Awful to Contemplate). I don't know anything but I noticed you didn't have Imitrx inhalent on your list of what he has tried. That worked very well for my husband for a few years. Just stopped working this cycle. Maybe your husband could try it to get him through this cycle. God Bless.
Lizzzz
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concerned
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Re: FEEL SO HELPLESS
« Reply #6 on: Aug 10th, 2005, 7:19am » |
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right now he is taking verapamil and has an appointment with a specialist, we are from a rural area and not alot of Docs around in reading everything i can read and trying to absorb as much of it as my brain will allow it appears that alot of you have had some success with imitrex and O2 going to spend some time looking into this before we see the doc.
Margi
the only med is Verapamil which in reading seems to be the old reliable. The attacks did get worse however last night he SLEPT ALL NIGHT the first time in 9 days the attacks this morning are only lasting about 10 minutes.
there is so much information here and i have so many questions i don't know where to start.
he wants to know if anyone knows if this has every been related to a heart attack, because when it hits and peaks he says he feels his heart will explode?
Also why does something that works once not work the next time?
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Margi
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Re: FEEL SO HELPLESS
« Reply #7 on: Aug 10th, 2005, 8:48am » |
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Concerned,
when an attack hits, blood pressure escalates and I'm sure that's what contributes to the feeling of the heart about to explode. I once took my husband's blood pressure during an attack (not an easy task and I won't ever try that again). It's was horribly elevated and his pulse rate was through the roof. They are in pain that you and I just can not fathom and it's like their body just goes into shock at the pain levels they reach. I remember actually being able to see Mike's heart racing, it was pounding so hard.
As to why things quit working...yep, another commonality. It's like the Beast gets smart and develops a shield for each weapon we throw. Something that works for awhile will suddenly be useless. Actually, if we could answer that "why", we'd be much closer to a cure. And, sadly, we're not.
I'm so happy to hear that he's had some pain free time and that the attacks are shorter though!! That's awesome news and could be indicative that the shrooms are working. I'm not sure how verpamil interacts with the shrooms but the folks over at clusterbusters would definitely be able to answer that. I believe, if someone has to be on meds while trying the shrooms that verapamil is probably the most benign and causes the least interaction, but I could be wrong. You're best to check with Flash or Pinkfloyd. Both of these boys work tirelessly with sufferers and are very knowledgeabe about the chemical structure of most cluster weapons. There is also a page at their site that deals directly with individual med reactions.
Keep us posted, Concerned, we're concerned too. Hope he has more pain free time today!
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And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
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Pinkfloyd
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Re: FEEL SO HELPLESS
« Reply #9 on: Aug 11th, 2005, 2:18am » |
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on Aug 10th, 2005, 7:19am, concerned wrote:The attacks did get worse however last night he SLEPT ALL NIGHT the first time in 9 days the attacks this morning are only lasting about 10 minutes.
there is so much information here and i have so many questions i don't know where to start. |
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If you or he want to discuss the shrooms (or any other treatments) send me an IM and I'll send you my phone number. I'd be happy to talk with either of you (or both).
I'll be out of town all weekend but I will have my cell phone with me. If you'd prefer I call you, (I don't mind, really), send me your number in email or IM and a good time to call.
Bobw
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concerned
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Re: FEEL SO HELPLESS
« Reply #10 on: Aug 11th, 2005, 5:58am » |
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 only 4 attacks yesterday and all were completely doable maybe he says a 3 or 4 on the kip scale but even better ANOTHER NIGHT OF SLEEP since this is when he is normally hit the hardest that seems to be a step in the right direction. thanks for the great links you people are the greatest. his biggest concern was that he was going to have a heart attach which tells me he really doesn't want to die just wants the pain to go away he has now come to terms with it just seems that each time it gets harder and harder i think the shroons have helped as the cycle seems to be lessening in strength, it has been 10 days now and subsiding, usually they are evey bit of 3 weeks or longer. I know when they first started he was depressed and thinking oh god another month of this i just can not take it any more he told me knowing that i was there and now knowing there are others who can relate to what he is felling has been a great comfort. THANK GOD FOR YOU PEOPLE, we will all get through this together. Pinkfloyd i know he has some questions and we will be getting in contact with you we will send an email as soon as we can get on the internet a home(dam phone company cut a line a the junction box when trying to fix another problem no phone service at this time they say it will be fixed by the weekend hope so) i want to do it when we can both talk as i have questions and so does he and we don't want to no ask all that is concerning us. BLESS YOU ALL AGAIN AND WISHES FOR PAIN FREE DAYS AND NIGHTS.
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