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Nytewatchyr

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Husband home from hospital, worried about symptoms
Aug 7^th, 2010 at 3:44pm

My husband suffers from clusters and is a member of this board (not sure his screenname; it's been a while for me). He was on verapamil (preventative), and Treximet and Zomig as intervention meds. (Both triptans). Also O2 but we've been out for a while. A week and a half ago he was dehydrated and had a regular headache. A cluster started and he used zomig, which has been helpful for a while. He then experienced complete stroke like symptoms. (He's a a paramedic, I'm an EMT/cop so we know what a stroke looks like.) Enroute to the hosp he started to clear up. At the hospital the symptoms started again then cleared up again. He had two head CTs, a head MRI, and a carotid ultrasound and all clear. Cardiac pain but all 4 EKGs clear. Then the clusters started. Worse than I've ever seen (and I've seen his worst). The docs didn't use triptans out of worry that that caused the TIA that sent him to the hospital. Dilautid prescribed and took the edge off occasionally but the pressure behind his eye never went away. They started him on depakote (an anti epileptic). That took the pressure away. Eventually he was released with a prescription for higher dose of verapamil, depakote, dilautid (we know we know we are not fans of narcs but the devil is worse than even atm), and O2. For the past week he has been sleeping non stop, broken by a cluster or two a day. A few days after his release they got so bad that he gave in and took zomig. It seemed to help so the on call neuro prescribed it and more dilautid. He takes the dilautid when a cluster starts and the zomig no more than once a day or so when one starts.

Aside from the fear that he had a stroke and the non stop clusters, I am afraid of the fact he has been sleeping non stop. NONSTOP. The only time he wakes is for a cluster or two, minor (relatively speaking) since we started the zomig.

I'm scared to death. I have lupus and I deal with pain and I have seen him deal with pain and dance with the devil. But is this sleeping normal? I tell him that it is, that the clusters clench his muscles so bad, that he spent three days in the hospital, and that he is taking dilautid occasionally (he's not much for narcs). The depakote takes a while to kick in I tell him. But does this explain 24 hours a day for well over a week?

Thanks for reading this long...

Kat

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Kat

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QnHeartMM CH.com Sponsor Offline I AM a Phoenix! Posts: 1783 San Diego, CA Gender:	Re: Husband home from hospital, worried about symptoms Reply #1 - Aug 7^th, 2010 at 4:06pm Wow Kat - I can't answer your questions about the meds and sleeping but just wanted to send you both a hug. Hope things look up for him soon, and if you remember his screen name be sure to let us know. Christy
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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: Husband home from hospital, worried about symptoms Reply #2 - Aug 7^th, 2010 at 4:28pm I can offer you prayers for a speedy recovery, I haven't heard of that kind of reaction to CH but then I know little to nothing about many of those meds. Joe
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Redd

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Re: Husband home from hospital, worried about symptoms
Reply #3 - Aug 7^th, 2010 at 6:17pm

delautid is almost as powerful as morphine, and might be causing both the sleepiness and the increase in attacks in the way of rebounds.

Narcotics are not a first line medication for treating CH, and the other evils that come with narcotic use I won't mention, they should be self explanitory.

Being that he only takes them occasionally, we don't know what dose he has, and that could make all the difference in the world. Personal sensitivity to the med can also play a role.

Gawd I HATE this disorder. I don't call it a disease. You can't catch it.

With everything else going on recently with him, are you seeing a Headache specialist Neuro or just a GP?

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"The goal of life living in agreement with Nature." ~Zeno

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Mike NZ

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Re: Husband home from hospital, worried about symptoms
Reply #4 - Aug 7^th, 2010 at 7:06pm

I'm sorry, but I've no magical answers I can share with you.

I do know that whenever I've been given narcotics that they do send me to sleep. A few years ago I was given a few doses of morphine for a back problem and I slept a lot for a few days, so it may well be something similar, enhanced by all the other drugs he has been given.

You'll no doubt be worried sick, so remember to look after yourself too.

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deltadarlin

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Re: Husband home from hospital, worried about symptoms
Reply #5 - Aug 7^th, 2010 at 7:38pm

Prefacing this by saying that I'm not a doctor or a pharmacist, just an internet junkie who likes research. It could very well be a combination of all medications that he is on.

Depakote (listed as severe side affects): extreme tiredness; lack of energy;

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or

Verapamil (only contolled release tablets have fatigue listed and it is a common side effect).

Dilaudid Tablets
Check with your doctor if any of these most COMMON side effects persist or become bothersome when using Dilaudid Tablets:

Constipation; dizziness, drowsiness; dry mouth; flushing; lightheadedness; nausea; sweating; vomiting.

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I would at least talk to my pharmacist and get his opinion (doctors may prescribe, but pharmacists are more aware of drug interactions).

Then again, throw those drugs on top of dancing with the beast and you have a worn out husband who is probably more sensitive to drugs at this point. It's a physical and an emotional/psychological battle and it can get quite wearing after awhile.

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Husband home from hospital, worried about symptoms Reply #6 - Aug 7^th, 2010 at 7:43pm Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Potter
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Karla

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Re: Husband home from hospital, worried about symptoms
Reply #7 - Aug 7^th, 2010 at 11:05pm

Dilaudid and depakote make me tired as all get out. When I do dilaudid alone I sleep for a couple days straight. I get shots for migraines. Only thing that works. Good thing I only get 1-2 migraines a year now. I took depakote for epilepsy years ago and It made me really tired. I couldnt wake up and get out of bed for anything and I had kids to take care of also. I had to go off the med due to allergic reaction. Most antisiezure drugs will cause tiredness. Please try oxygen, high dose of verapamil or even lithium.

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-johnny- CH.com Sponsor Offline theres no smoking on the dock Posts: 1642 fayette county ohio Gender:	Re: Husband home from hospital, worried about symptoms Reply #8 - Aug 7^th, 2010 at 11:59pm how is he now
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Nytewatchyr CH.com Newbie Offline Blessed Be Posts: 4 my own little world Gender:	Re: Husband home from hospital, worried about symptoms Reply #9 - Aug 8^th, 2010 at 9:54am Thank you all for your support and replies. He made it up for four hours yesterday, which was much better than he's been lately. Woohoo!
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Callico

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Re: Husband home from hospital, worried about symptoms
Reply #10 - Aug 8^th, 2010 at 7:34pm

Periodically I get stroke like symptoms when getting hit badly. Normally they wear off within an hour or at most two, but there is not residual sign of anything. They are not TIA's according to several neuros I've dealt with, and I've had the CT scans, MRI's, MRA's, Carotic Dopplers, you name it. (Over $28,000 in tests one weekend). Watch them carefully, but what I was told was I'm a rare subset of a rare disorder in which the nervous system will shut down for a while due to the severity of the pain. Doesn't mean it isn't still scary, but if all tests are clear I'd bet that is his problem.

The one significant factor in mine that was instrumental in that diagnosis is my paralysis (hemiparesis) is on the same side as my CH. If it were a stroke it would be on the opposite side from the attack, or so I was told.

Jerry

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Lettucehead

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Re: Husband home from hospital, worried about symptoms
Reply #11 - Aug 8^th, 2010 at 9:36pm

The thing is - yes, the whole episode could have been from some sort of nerve overload, but really, I agree with his doctors - I would be VERY leery of tripans in such a person. As you all know, tripans work by constricting blood vessels. The problem is that tripans are not wonderfully specific at WHICH blood vessels they constrict. If some of the blood vessels in his brain were congenitally narrow or were narrowed by atherosclerosis, further constriction could easily cause stroke like symptoms from lack of enough blood getting to the areas of the brain that needed it. Also, the basic meaning of a TIA is 'Transient Ischemic Attack', i.e. it is transient. These are essentially stroke symptoms that last less than 24hrs. If symptoms last longer, it is not a TIA anymore - it is a stroke. And one can definitely have a TIA and have normal testing afterword including MRI.

Sorry for the rambling - just my 2cts.
I just would hate for him to go back to using significant amounts of tripans only to have more serious effects - such as stroke symptoms that don't resolve in short order...

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Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH

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Callico CH.com Hall of Famer Offline Author of "Stranded at Romson's Lodge Posts: 4916 Aurora IL Gender:	Re: Husband home from hospital, worried about symptoms Reply #12 - Aug 9^th, 2010 at 5:03pm Lettucehead, I'm with you generally on your post. The only place I would differ is that one of my MRI's was done while I was still suffering the symptoms and no stroke or TIA was found. Just the hemiparesis. Jerry
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Redd CH.com Sponsor Offline Posts: 8457 Stevens Point USA Wisconsin Gender:	Re: Husband home from hospital, worried about symptoms Reply #13 - Aug 9^th, 2010 at 10:24pm I still wonder what the credentials are of the treating Doc. This "could" be important.
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Happy Pappy CH.com Sponsor Offline Finer than frogs hair! Posts: 744 Ft Loudon, PA Gender:	Re: Husband home from hospital, worried about symptoms Reply #14 - Aug 10^th, 2010 at 10:44am I have had 5 tia's and 2 big strokes . one stroke on the side I always get hit on. all due to a hole in my heart. I can no longer take triptans, just a large dose of verapamil and o2
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