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kcopelin
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Annette, How's Your Husband?
« on: Nov 6th, 2006, 12:34pm » |
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Annette,
I probably missed the follow-up on how your husband is doing-so, sorry if you have to repeat yourself-was just thinking about y'all last night and wondered how he is.
Probably others are concerned too.
So...how's your husband? Stitches healing, eyesight better or worse, CH better, worse or same? And how are you holding up. Being a supporter can be hell.
Praying for PFDAN for y'all,
kathy
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BB
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Re: Annette, How's Your Husband?
« Reply #1 on: Nov 6th, 2006, 3:40pm » |
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Hello Kathy
Thanks for asking. 
Daniel is learning to cope but he is still getting hits 3-4 times a day, and this is now week 16 since it all started, really wondering if he is going chronic.
He has just started to learn how to use oxygen properly and managed to abort a couple milder hits . YAY ! Otherwise the only things that work all the time is imigran injections.
His vision are still the same, blurry, fluctuating. We have another appointment with the Pain Clinic today, and also with the psych.
I am holding up fine, thank you, bit tired and rather busy but still smiling 
I hope you are painfree Kathy and keeping well.
Hugs
Annette
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thomas
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Re: Annette, How's Your Husband?
« Reply #2 on: Nov 6th, 2006, 3:42pm » |
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How much imigran is he using and is he using any preventive meds?
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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The mad viking
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Re: Annette, How's Your Husband?
« Reply #3 on: Nov 6th, 2006, 3:59pm » |
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some docs says 2 shots of trex 12 hors apart
some neuroes say 4 shots a day , some 6 and i shoot up to 8 a day and i am still among you friends "sorry to say" 
The WR as far as i know from my neuro is that there is a guy at some headacheclinic in Gothenburg in Sweden that has been precsribed 32 shots of trex a day for mnths
The "2shots a day"rule goes back to the early 90s when trex was released when GSK and the researchers was unsecure about sideeffects+++++ etcetcetc
Today the neurollogissts sau they dont believe that trex is that bad for the heart as first expected.My neuro tell me to take what i need to have a as normal life as possible
Many around here in Clusterville are pretty much hung up in chestpain and sideeffects etcetc
There is a rather distinct difference between heartpain and chestpain and it can be mistaken
I have experienced both
As you know Anette is that the muscles contracts when use of triptans.Some peps cryes wolf when that happend
i would say that quality of life should come as nr 1 on the prilisst
Just my 2 cent worth
Svenn
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thomas
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Re: Annette, How's Your Husband?
« Reply #4 on: Nov 6th, 2006, 4:09pm » |
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on Nov 6th, 2006, 3:59pm, The mad viking wrote:some docs says 2 shots of trex 12 hors apart
some neuroes say 4 shots a day , some 6 and i shoot up to 8 a day and i am still among you friends "sorry to say"
The WR as far as i know from my neuro is that there is a guy at some headacheclinic in Gothenburg in Sweden that has been precsribed 32 shots of trex a day for mnths
The "2shots a day"rule goes back to the early 90s when trex was released when GSK and the researchers was unsecure about sideeffects+++++ etcetcetc
Today the neurollogissts sau they dont believe that trex is that bad for the heart as first expected.My neuro tell me to take what i need to have a as normal life as possible
Many around here in Clusterville are pretty much hung up in chestpain and sideeffects etcetc
There is a rather distinct difference between heartpain and chestpain and it can be mistaken
I have experienced both
As you know Anette is that the muscles contracts when use of triptans.Some peps cryes wolf when that happend
i would say that quality of life should come as nr 1 on the prilisst
Just my 2 cent worth
Svenn
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I know you have to use it to continue on. The side effects and such are not what concern me about imitrex/imigran, it is the prolonging of cycles that use of triptans can cause. The last three years have been my easiest cycles ever, the only difference is no imitrex.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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maffumatt
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Re: Annette, How's Your Husband?
« Reply #5 on: Nov 6th, 2006, 4:18pm » |
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I can back Thomas up on that, I believe Trex prolonged mine from 3 months to 10 months, I only use it in emergency's now. When I cant use O2, and even then if I can ride it out without it, I will. If I have to use it I use as little as possible, 1/3 normally does the trick for me.
Matt
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seasonalboomer
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Re: Annette, How's Your Husband?
« Reply #6 on: Nov 6th, 2006, 4:18pm » |
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on Nov 6th, 2006, 4:09pm, thomas wrote:
I know you have to use it to continue on. The side effects and such are not what concern me about imitrex/imigran, it is the prolonging of cycles that use of triptans can cause. The last three years have been my easiest cycles ever, the only difference is no imitrex. |
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As is often the case, just as the last two years have been your easiest cycles ever. Mine too .... only difference for me is that I've had Imitrex and O2.... damned insidious beast....
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BB
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Re: Annette, How's Your Husband?
« Reply #7 on: Nov 6th, 2006, 4:49pm » |
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Thanks all for your inputs
Daniel is on verapamil 360 mg twice a day, Lyrica 300mg twice a day and Indomethacin 75 mg twice a day as preventive. He had tried Lithium, Ergotamine and Deseril ( Sansert ) in the past without success.
He is learning how to relax and how to use the oxygen properly. Its amazing how much better the oxygen works when one gets the hang of it.
Imigran injection is the only thing that works all the time without fail and he is splitting the dose as suggested in the imitrex tip. Zyprexa doesnt yet abort the whole attack but reducs the pain and shorten the length of the attacks, making it easier for the oxygen to work.
Painfree wishes to all.
Annette
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thomas
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Re: Annette, How's Your Husband?
« Reply #8 on: Nov 6th, 2006, 4:54pm » |
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I'm no doctor, but I'd dump the indomethican, unless he has CPH as well. I'm not a big fan of verapamil either, but if it's working. Hope he gets some pf time soon.
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| « Last Edit: Nov 6th, 2006, 4:55pm by thomas » |
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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The mad viking
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Re: Annette, How's Your Husband?
« Reply #9 on: Nov 6th, 2006, 5:27pm » |
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on Nov 6th, 2006, 4:54pm, thomas wrote:| I'm no doctor, but I'd dump the indomethican, unless he has CPH as well. . |
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I really do agree with you on this Thomas
Svenn
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chewy
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Re: Annette, How's Your Husband?
« Reply #10 on: Nov 6th, 2006, 6:43pm » |
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I also wouldn't spend the next 36 weeks worrying about him gooing chronic.
Day at a time.
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BB
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Re: Annette, How's Your Husband?
« Reply #11 on: Nov 6th, 2006, 7:10pm » |
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on Nov 6th, 2006, 4:54pm, thomas wrote:| I'm no doctor, but I'd dump the indomethican, unless he has CPH as well. I'm not a big fan of verapamil either, but if it's working. Hope he gets some pf time soon. |
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Thanks Thomas
He does have CPH as well. Without the Indomethacin he experience a constant headache and dull pain/burning all the time, between hits. This goes after 3 days of Indomethacin. We tried to wean it off for a while to see what happened and it came back, so he started the med again and it went again.
Verapamil is necessary as he has borderline hypertension without CH, his usual blood pressure was already at 145/90, during an attack it would shoot up to 200/120. So he should be on antihypertensive anyway, might as well be on Verapamil. Unfortunately it didnt help him as much as it did for others.
Thanks for all the suggestions. Please keep them comming. They are much appreciated.
Annette
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BB
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Re: Annette, How's Your Husband?
« Reply #12 on: Nov 6th, 2006, 7:12pm » |
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on Nov 6th, 2006, 6:43pm, chewy wrote:I also wouldn't spend the next 36 weeks worrying about him gooing chronic.
Day at a time. |
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You are absolutely right Chewy, easier said than done though, we are trying to.
Thanks for all your kind words and support
Annette
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Jobette
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Re: Annette, How's Your Husband?
« Reply #13 on: Nov 6th, 2006, 10:20pm » |
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Annette, I missed your first threads, how long has you DH had clusters and how many other conditions are you treating? Jobette
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kcopelin
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Re: Annette, How's Your Husband?
« Reply #14 on: Nov 7th, 2006, 1:02am » |
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All right Annette, thanks for the update. So Daniel is using Zyprexa as well as O2 and imigran? Annette, this may be little consolation, but for the first 5 years or so of my CH each cycle lasted between 1-2 months. The cycles got progressively longer, and more intense. Only after 24 years did I become chronic. I thought chronic would be the worse thing possible-in a way its a blessing-I do not have to spend any time wondering when the next cycle will start. Just live between the pain.
My best to Daniel,
kathy
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roy21302
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Re: Annette, How's Your Husband?
« Reply #15 on: Nov 7th, 2006, 3:37pm » |
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Annette,
Thanks for the update on Daniel, just remember we are all pulling for you both of you take care.
Cheers Roy
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BB
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Re: Annette, How's Your Husband?
« Reply #16 on: Nov 7th, 2006, 7:41pm » |
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Thank you so much everyone for being here for both of us. The support has helped more than one thinks possible
Jobette,
This is Daniel first cycle, he was diagnosed on 01st August this year. We are still learning the rope.
He has existing borderline hypertension but otherwise was healthy pre CH. Now with CH he has Trigeminal neuralgia, Chronic Hemicrania, Hysterical blindness and Anxiety/Depression 
Oxygen has been a godsend, also imigran works well, zyprexa is helping and melatonin is great, verapamil is more of a necessity. The next thing to learn is relaxation, a positive mind frame and a better coping strategy.
Painfree wishes to all.
Annette
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thomas
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Re: Annette, How's Your Husband?
« Reply #17 on: Nov 8th, 2006, 8:58am » |
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on Nov 7th, 2006, 7:41pm, BB wrote:
The next thing to learn is relaxation, a positive mind frame and a better coping strategy.
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You would be amazed at how much that actually helps, that is a tool that I learned to use from Mike/Magi from Canada.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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George_J
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Re: Annette, How's Your Husband?
« Reply #18 on: Nov 8th, 2006, 9:29am » |
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on Nov 7th, 2006, 7:41pm, BB wrote:The next thing to learn is relaxation, a positive mind frame and a better coping strategy.
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I agree with Thomas. It's surprising how much this can help. It's not easy to learn, but it's certainly worth it.
Best wishes,
George
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Re: Annette, How's Your Husband?
« Reply #19 on: Nov 8th, 2006, 5:28pm » |
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Thanks everyone
Daniel is now seeing the psychologist and the physio therapist from the Pain Clinic weekly to learn relaxation techniques through meditation, yoga and bio feedbacks.
Seems to be helping so fingers crossed.
On the other hand, the beast is morphing. The hits now are all over the place and totally random, not sticking to a timeframe like it used to . Thats why the question whether he is going chronic ?
Oh well, to follow Chewys and others advice, one day at a time and not fretting about the next 3-4 or 34 weeks.
Painfree wishes to all.
Annette
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Margi
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Re: Annette, How's Your Husband?
« Reply #20 on: Nov 9th, 2006, 11:00am » |
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OK, I just lost a HUGE post that took me 20 minutes to type out.  I had inserted a bunch of quotes from you and put in responses but ... I think I broke the system. *sigh*
So...I'm just going to summarize what I said. Annette, there are some things that really concern me in your posts in this thread and, although I know you're very new to cluster, I feel they need to be addressed, ok?
1. The definition of chronic is 12 months in cycle with no more than 30 days of pain freedom during that time. Daniel, therefore, can't be chronic until next August 1.
2. Sansert, Imitrex, Verapamil, Lyrica, Indomethacin, Melatonin, Lithium, Ergotamine, Zyprexa.... wow, that's a lot of meds that he's tried in just over 3 months!  I realize that he's not on the lithium, ergotamine, or sansert anymore but...HOLY. Annette it could very well be that all of these chemicals he's put into his system in such a short time have made his condition horribly worse. My heart just aches for the poor guy.
3. CPH is chronic paroxysmal hemicrania. It is not 'all day pain' as you describe. Here's a definition of it from OUCH-US - the headache comparison chart. http://www.ouch-us.org/chgeneral/hacomptable.htm I know you prefer google for your researching but sometimes google doesn't give accurate information.
4. Zyprexa....this is an antipsychotic med used to treat schizophrenia and bipolarism. It's never going to abort a cluster attack as you're hoping. There are many lawsuits that have been launched because of the horrible side effects this med can cause, hysterical blindness being one of the milder ones! Is it absolutely necessary that he's on this med? Here's just one website on all the atrocities Zyprexa can cause...
http://www.alexanderlaw.com/zyprexa/side-effects.html
5. Blood pressure - it's common (almost a given) for a clusterhead's b/p to shoot up like that during an attack. Please tell me you're not taking his b/p during his attacks? I tried that once with my husband. Only once, never again. It nearly drove him insane having to sit there feeling his arm squeezed... if you are doing this, Annette - please stop ok? Zyprexa can also cause low blood pressure. Combining that with verapamil could be VERY dangerous! What IS his resting blood pressure now, Annette? 145/90 isn't all that high - yes, it's on the high side of normal. No, I'm not a doctor, but this is MY exact blood pressure actually and my doctor says it's not high enough to warrant treatment yet. I'm better to control it through diet and lifestyle. Less coffee, less smoking (less all the good stuff ). You've got Daniel on TWO blood pressure lowerers. Why?
6. I know your heart is in the right place, Annette - please take my post in the spirit I'm sending it. I know the temptation to throw all the ammunition possible at this inhuman pain is overwhelming at times. But that can have devastating effects in the long run. It's like throwing gasoline on an already burning fire, ok? I honestly worry that Daniel is SO much worse than need be because of all the chemical experimenting. Please consider tapering and detox, ok? Start from square one again and see if you can regulate him. SO many people here have reported shorter, easier to manage cycles because they are either med free or only use abortives - no preventatives. Verapamil and imitrex alone are well known to extend cycles and increase frequency. Please - Annette - hear me on this.
I hope you take this post the right way and know I'm only trying to help.
Margi
p.s. one more thing: we don't know much about the cause of cluster other than it is from a dodgy hypothalmus and a seratonin imbalance. So, doesn't it make sense to try to go to the root and treat that imbalance. I know you're against the illegal alternative and I'm not trying to push that. However, these alternative options honestly do make the most sense because they do go straight to regulating seratonin. Food for thought anyway.
edited to add: I've just read Eric's (E-Double's) post on Zyprexa over on the meds board. It does seem to be helping him, Annette - my apologies for not knowing that it is being touted as an abortive. I still think, though, combining it with verapamil is very dangerous. My apologies to Eric if I've offended you with my Zyprexa comments. Just goes to show ya that sometimes not all that you read on the internet is the last word, right?
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| « Last Edit: Nov 9th, 2006, 11:50am by Margi » |
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BikerBob
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Re: Annette, How's Your Husband?
« Reply #21 on: Nov 9th, 2006, 2:56pm » |
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If I was the supporter of a spouse who had cluster headaches, I would certainly encourage the clusterhead spouse to read this message board and post messages here.
BB
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Linda_Howell
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Re: Annette, How's Your Husband?
« Reply #22 on: Nov 9th, 2006, 3:02pm » |
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He has hysterical blindess Bob, and for now is kinda of looking at the world through blurry double vision if I remember that right.
I'm certain that Annette has read things to him from here though.
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Giovanni
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Re: Annette, How's Your Husband?
« Reply #23 on: Nov 9th, 2006, 3:13pm » |
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on Nov 8th, 2006, 5:28pm, BB wrote:
Thanks everyone
On the other hand, the beast is morphing. The hits now are all over the place and totally random, not sticking to a timeframe like it used to . Thats why the question whether he is going chronic ?
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At a certain point of my cycles mine does the same thing--goes from timeframe to random numerous hits. The hits become less frequent and then disappears until the next time.
John
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Linda_Howell
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Re: Annette, How's Your Husband?
« Reply #24 on: Nov 9th, 2006, 3:28pm » |
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I've been chronic for 19 yrs. I have NEVER had a hit that wasn't random. They have always been all over the place and never at the same time of day or night.
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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