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Topic: Not having fun, wish HE weren't here! (Read 1268 times) |
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underwire
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Not having fun, wish HE weren't here!
« on: Dec 17th, 2007, 8:44am » |
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Hi--my husband is a clusterhead, I am still in love with him after 17 years, it is the Beast that I wish were not here. We dealt with this in 2001 for about two months and thank God I found this site. Now, he has been having CH's three or four times a day for over 2 months. He completely violates the rules and takes too many Trex shots (3 yesterday) he is also on Lithium, just tapered off Prednisone. For the last week he has had about two CHs a day but has a constant shadow. Heres the question--while I have my arsenal of Melatonin, Kudzu and RC seeds, he wants to try a sleeping pill because he believes that if he could sleep, the shadow and maybe a kip2 or 3 would pass. I have an old prescription for Ambien and Trazadone which I take for sleep. Any thoughts on contraindications to mix these drugs or which may work best?
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vietvet2tours
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Re: Not having fun, wish HE weren't here!
« Reply #1 on: Dec 17th, 2007, 10:03am » |
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Huffin oxygen can't hurt.
Potter
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Guiseppi
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Re: Not having fun, wish HE weren't here!
« Reply #2 on: Dec 17th, 2007, 10:05am » |
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I don't know ANYTHING about drug interactions so I'll skip that part and strongly advise you to check with your doc about what'll mix with what he's taking.
That being said he might want to try melatonin before he goes to bed. It's available over the counter at any health or vitamin store. Try 9-12 mg about 45 minutes before bed time. Many can avoid the nite time hits using it.
You did not mention oxygen. 30 years with the beast and still my first line abortive. It's great for the nite time hits because it doesn't jack you up, you can go right back to sleep. If he hasn't tried it, or even if he has and it didn't work, read the oxygen link on the left and talk to your doctor about it.
And bless your heart for being such an awesome supporter. Couldn't handle this sh^% without the wife sticking by me for 27 years.
Guiseppi
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seasonalboomer
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Re: Not having fun, wish HE weren't here!
« Reply #3 on: Dec 17th, 2007, 10:07am » |
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on Dec 17th, 2007, 8:44am, underwire wrote:| Hi--my husband is a clusterhead, I am still in love with him after 17 years, it is the Beast that I wish were not here. We dealt with this in 2001 for about two months and thank God I found this site. Now, he has been having CH's three or four times a day for over 2 months. He completely violates the rules and takes too many Trex shots (3 yesterday) he is also on Lithium, just tapered off Prednisone. For the last week he has had about two CHs a day but has a constant shadow. Heres the question--while I have my arsenal of Melatonin, Kudzu and RC seeds, he wants to try a sleeping pill because he believes that if he could sleep, the shadow and maybe a kip2 or 3 would pass. I have an old prescription for Ambien and Trazadone which I take for sleep. Any thoughts on contraindications to mix these drugs or which may work best? |
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you don't mention oxygen. Does he have a doctor that can provide him a prescription for Oxygen (15 lpm/non-rebreather mask)? This could possibly allow him to cut way back on his trex usage. It may not work 100%, but for me it has about a 80% success rate. That's a lot of shots I don't have to take.
Sounds like you all are at panic stage and whirling around for answers. It's tough to get a "clinical" mindset of running the averages and how to truly "manage" these things when you're there. Hopefully this cycle will be foreshortened. Then the idea is to build the action plan for a future cycle.
Scott
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thebbz
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Re: Not having fun, wish HE weren't here!
« Reply #4 on: Dec 17th, 2007, 2:36pm » |
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He isn't the only one that pushed the border of imitrex intake. Sounds like he's in the rebounds. Take the 02 suggestion. Hang tough. Do what you want with the other meds.......just run it by the doctor first. Downers trigger the beast for me, it would be like asking for it. But thats just me.
all the best
thebb
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Linda_Howell
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Re: Not having fun, wish HE weren't here!
« Reply #5 on: Dec 17th, 2007, 4:14pm » |
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Hi,
Here is a link to read regarding oxygen. It helps about 70% of us abort a headache in mins. It is so very worth trying. If it works..he could use a LOT less of the Imitrex. Believe me..it is a life-saver for so many of us here.
Quote:| http://www.ouch-us.org/medications/oxygen/o2info.shtml |
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While I understand his reasoning about taking a sleeping pill, he should understand that it won't keep the beast away at all. All it will do is make him groggy so he can't fight. With all that your husband is taking I would say that is one he can do without.
Linda
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ttnolan
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Re: Not having fun, wish HE weren't here!
« Reply #6 on: Dec 17th, 2007, 6:19pm » |
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Dito, dito, dito on the oxygen. 32 years with CH and I could not live, much less sleep at all without it! I can not stress this enough... sometimes I get the feeling people think we are full of hot air... no it's oxygen!
Happy hyperventilating all...
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tigerman
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Re: Not having fun, wish HE weren't here!
« Reply #7 on: Dec 17th, 2007, 6:48pm » |
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2 years ago,late sept. earlyOct.,had ambien during a cycle and it only took 3 nights to learn,that @ least that sleeping pill didnt keep the monster asleep and this go around neither do muscle relaxers.Does it matter that its a 2 or 3 on the KIP?I dont think so ,but Im a virgin,not on pain,but on how to deal ,treat,and prevent.I stopped taking the Zomig 3 days ago cause I felt in the long run it was making them come on many more times per day/night.Try microwave towel and ice pack @ 1st the ice makes it worse feeling but when I took it off and head thawed easier 2 deal with.If I had the oxygen I would be hitting it,but luckily the above is working for me,but my cycle could be ending.Also hot hot bath while doing the above.The big thing with me is to remain calm,if possible
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underwire
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Re: Not having fun, wish HE weren't here!
« Reply #8 on: Dec 17th, 2007, 9:29pm » |
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I should have mentioned he does have the oxygen. A self-generating tank so he actually falls asleep with it on. I agree that it may be rebounds, because he has not had a CH all day just a shadow. So it is now 9:30 here and I am going to give him the melatonin, ask him to do the oxygen for a few and see if that does it. I worry so much about the meds; He is keeping track of his blood pressure but the home monitors are not as reliable as I would like. I think for tonight, I will ask that he just does the Tylenol PM until we get some info from his Neuroligist. Thanks
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underwire
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Re: Not having fun, wish HE weren't here!
« Reply #9 on: Dec 17th, 2007, 9:47pm » |
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Update! I just had a minor success--not only is he asleep but I opened a bill from the oxygen company and the insurance is covering it! We now spend $100 a shot for the Trex, and have actually had a $600 day at one point. And even though we pay out of pocket, we still have to fight the Drs. to get the meds. I know, he shouldn't take so much but when he is in a Cluster, the last thing he needs is to have me fight him on how he treats it. And I thank God that we will not go hungry, as some people might, because of the cost. We are not wealthy, but I would rather be working at a $5.00 job to put food on the table than to watch him suffer. So, for today, I am grateful that he has not had a shot since 3:30 am., he got some of his old personality back, he is asleep and we are learning to appreciate life more because as a result of the bad days.
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Brew
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Re: Not having fun, wish HE weren't here!
« Reply #10 on: Dec 17th, 2007, 10:01pm » |
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Have him talk to his doc about combining the lithium with Verapamil. For many it's a deadly combination (to the beast, that is).
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RichardN
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Re: Not having fun, wish HE weren't here!
« Reply #11 on: Dec 17th, 2007, 10:12pm » |
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Another vote for 02 here. I can't take Imitrex (arterie blockage and high cholesterol) . . . so 02 is my only abortive.
You mentioned he has an oxygen generator . . . and falls asleep with it on. Was this ordered for another condition other than clusters? I do know people with these machines, but they are used for other problems. To abort a CH attack, we use 12-15 lpm through a non-rebreather mask (or Clustermasx), which guarantees 100% 02. I can kill him in minutes if used early-on in the attack . . . if it doesn't work within 20 min., it's probably not going to. At that flow rate, the rule here is NEVER use the strap on the mask, because if you fall asleep wearing a non-rebreather mask . . . you'll wake strangling for air when the tank runs out. 02 at lower rates is not nearly as effective and I don't think the oxygen generator produces the flo-rate we need.
Regarding sleeping pills. Try melatonin first 6-9 mg 45 min before bedtime. Helps many with the night hits . . . can make you a little groggy so it takes you a minute to realize what woke you up before you reach for the 02 . . . . but I think I would prefer a little groginesss to a pill induced deep sleep which might allow the beast to get a stronger hold before waking in agony . . . . not a pharmacist or doctor . . . just my guess.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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underwire
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Re: Not having fun, wish HE weren't here!
« Reply #12 on: Dec 18th, 2007, 1:10am » |
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Interesting, his is a re-breather mask set at the highest level; I thought that the re-breather was the oxygen of choice for CH; maybe that is why it does not seem to abort the CH. For now he is still asleep, did wake up for the Tylenol PM and is still wearing the oxygen mask. Little Ms. Support is going to try to sleep, too. Thanks folks.
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RichardN
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Re: Not having fun, wish HE weren't here!
« Reply #13 on: Dec 18th, 2007, 1:22am » |
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Don's go to sleep yet . .. BRB
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I can live with the beast as long as I don't have to "dance" with the bastard.
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ttnolan
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Re: Not having fun, wish HE weren't here!
« Reply #14 on: Dec 18th, 2007, 1:32am » |
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Yes, I have to expand on what richard said. For me anyway the O2 is an abort. You use it, hyperventilating at 12-15 lpm with a good nonrebreather mask to give 100% O2. 5-15 mins should do it. If not, get off the O2 and walk about a bit, suck up the pain and try again. As with most aborts, especially O2, if you use it constantly it becomes ineffective. Don't fall asleep with it on, use it to abort, then sleep. For me it seems to be all about the shock value, creating the needed chemical changes in your system. Blast it, and if it doesn't work, get off for a while and then blast again. If you stay on it, your body gets used to it and no benefical chemistry changes happen to abort the attacks. Can't stress enough the high flow rates with a mask designed to give 100% O2. No leaks, no vents without the one way flapper valves... and if you can rig a bigger bag, do it. I have never known an O2 generator to deliver 15 lpm, its always been tanks for me. I get woken by the beast almost every hour, 5 mins on O2 and I'm back to sleeping like a baby.
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RichardN
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Re: Not having fun, wish HE weren't here!
« Reply #15 on: Dec 18th, 2007, 1:34am » |
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Just tried to call a friend of mine (has sleep apnea) who has a n oxygen generator to try and get some specs .. . . couldn't reach him.
The reason I'm skeptical is that a few months ago when I was getting replacement (02) tanks at my med supplier, which also supplies oxygen generators, I asked about flo-rates on same and they definitely did not meet my needs (for aborting CH) . . . . that's why I asked if it had been ordered for another condition.
You would not want to use 02 at the rate we use to abort on a continuous basis. I'm sure some "pros" will be along to gather (and offer) some more info.
You've found the motherlode of CH info . . . keep reading . . .keep asking . . . this place gave me my life back.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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txbeck
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Re: Not having fun, wish HE weren't here!
« Reply #16 on: Dec 18th, 2007, 2:29am » |
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It took me several months and three different suppliers to get the right setup for oxygen. A concentrator just didn't deliver the high flow rate necessary to abort CH.
Meanwhile, there may be a couple of other tricks I have used for so many years I had forgotten they also prevent nighttime hits. I sleep in as cool a room as possible. Often that means I'll open a window in the wintertime and pile on lots of blankets. Or I keep a couple of cool gelpacks in my pillow to keep my head cool. The other trick is to add a humidifier to my bedroom anytime the heater is running. Both help tremendously to delay cycles and to reduce the frequency and severity of hits.
I take melatonin and ambien off cycle, but in cycle the ambien does not help. As others have mentioned, it just gets in the way when you need to pace or huff oxygen.
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Becky
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underwire
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Re: Not having fun, wish HE weren't here!
« Reply #17 on: Dec 18th, 2007, 3:43pm » |
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36 hours and Counting! Even his shadow has diminished. I am relaying everything you guys offer--bought a humidifier--ane he listens to YOU. Me, I am just a nagging wife......
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txbeck
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Re: Not having fun, wish HE weren't here!
« Reply #18 on: Dec 18th, 2007, 5:47pm » |
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That's great news, Underwire. I think you said you've been married 17 years. My hubby's been putting up with me for 47 years and we are still learning. My first cluster was in 1963-64, just after the birth of our second child.
Folks here, like you, remind me to tell him how much I appreciate his support. I cannot imagine how I'd have gotten through this without him. It takes a very special partner to keep a clusterhead somewhat sane.
Becky
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Becky
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