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Topic: Re shakes, cold body temp & serotonine syndrom (Read 4278 times) |
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welshchipmonk
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Re shakes, cold body temp & serotonine syndrom
« on: May 5th, 2008, 5:10am » |
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Hi
We would really like to thank you all for sharing your different experience and complications with CH.
Yesterday Dave had three really weird attacks- all happening withing 10-25 mins of the last one.
The first three were more like convulsions to watch - he was conscious but not able to talk much due to the violence of the attack, his arms and legs were twitching/flailing ? uncontrollably and was very cold.
He had just taken a sumatriptan tablet so we assumed that it had taken the pain away but that he was still having a violent attack with the first one. After it had finished he was shivering uncontrollably, was very exhausted and so upset by it that he was reduced to tears. After about 20 mins with the help of my son we were able to walk him to the sofa. I then shot out to ASDA for about 1/2 hour and he had had another attack while I was out. Once he had recovered from the second he wanted the loo and so got up to go upstairs, when he collapsed at the bottom of the stairs and had a third attack. We then got him to bum shuffle upstairs into the bathroom when he felt able to do so.
While he was on the loo I then rang NHS direct a help line in the uk run by nurses etc who said to get a dr out. Dave then went to stand up and collapsed back onto the loo and sort of feinted onto me, passing in and out of consciousness so I called an ambulance. By the time he came round he was verbally very confused as if he had suffered a stroke, not being able to use the correct words and unable to communicate how he felt. By the time we got A & E he was a bit better, but still not able to remember his date of birth, where he was, what day it was ect - this gradually got better over the course of a few hours. As he is under their neurologist and sees him on Tuesday they let us come home once Dave was well enough, and put it down to the pain that he is suffering from the headaches.
When we got home he had a bad evening and night with quite a few CH attacks ranging from 6-8 on the KIP scale and eventually after sitting in a cold bath of water for ages got to sleep about 2am this morning.
He is on Venlafaxine for his depression, so I have printed the article on Seritonine Syndrome to give to his neurologist , ironically thou as he is so ill with the CH, he keeps forgetting to take it, so I have suggested cutting it out altogether as in the past when he has tried to cut down the side effects have been awful, but obviously the brain is too distracted with this new problem to be bothered by this. We are getting a light box and will try other methods of controlling the depression as its much more important that he gets the meds he needs for the CH.
If it hadn't been for your postings, we wouldn't have had a clue where to look for help with this new development so thanks so much for the time and effort you put into sharing your experiences and we will keep you updated with his progress.
I am also soo glad that we live in the UK and seem to have fallen into the lap of a very good neurologist.
Suzie
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Garys_Girl
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Re: Re shakes, cold body temp & serotonine syn
« Reply #1 on: May 5th, 2008, 1:46pm » |
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Suzie, that is SO scary. It sounds much worse than what Gary experienced - because while he experienced confusion during the attack, he never lost consciousness and for the most part knew where he was and what was happening.
I'm so glad that my posting here helped you identify what was happening. I'm glad you've got a good neuro - I hope you can successfully figure out where to go from here.
Most importantly, I hope he's doing better and that there will be no repeat!
Laurie
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Laurie
"It's comin' like a freight train - can't you hear it?" - Gary
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welshchipmonk
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Re: Re shakes, cold body temp & serotonine syn
« Reply #3 on: May 5th, 2008, 4:17pm » |
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Thanks both for that, the drugs link was very interesting, there is no way I would have found a site like that.
Anther piece of info going to the hospital tomorrow! 
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welshchipmonk
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Re: Re shakes, cold body temp & serotonine syn
« Reply #4 on: May 7th, 2008, 7:57am » |
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Hi again,
Dave had another bout of "fits??" on Monday night and we ended up back down A & E. He didn't have the verbal confusion thank goodness, although during the second attack he wasn't able to talk as if his lips and tongue were paralyzed but this stopped once the attack was over. The drs kept him until he had fully recovered and as he was seeing the neurologist on Tues they let us home in the wee small hours.
Saw the Neurologist (who for anybody in South Wales UK, is a Dr Strang at the Royal Glamorgan Hospital, Llantrissant and he REALLY KNOWS HIS STUFF ABOUT CH!!). He made us go through each attack individually, asking loads of questions and ruled out the first three attacks as siezures, rather they were very severe CH attacks, but the last 3 attacks were seizures.
I mentioned that Dave had stopped taking his antidepressant - Venlaflaxine because our GP had been really anti about giving Dave any more Sumatriptan as he has high blood pressure. In the past if Dave ran out of the Venlaflaxine by mistake he had really bad side effects, but with his head being so bad he had often forgotten to take it without any probs so after what the GP said he decided not to take it any more because he wants to reduce the amount of prescription stuff hes on and the depression is much better now.
So Dr Strang the neurologist had a good look at the meds Dave is on for his other problems and said that often the Venlaflaxine can cause nasty reactions if stopped abruptly among them seizures, so he recommended taking it but on half the amount Dave used to take, starting yesterday - Tues. He also put Dave on high doses of prednisolone for the next week, dropped his Indometacin and kept him on the Sumatriptan and Pizotifen, and we go back again next Tues. He also said if we need the ambulance again to make sure the give him 100% O2.
And guess what yesterday he had no attacks in the morning a couple of 5-6's in the evening and 3 or 4 6-7's during before midnight, whereas the rest of the previous week he'd been having 4 or 5 in the morning the same again early evening and 5-8 between 11 and 2pm all being 7 -9 on the kip scale. So heres hoping that he might have a better week than the last 6 or 7.
Thanks again to you for your advice as it helped to see what sort of direction to go, and also if anybody else is also on anti depressants maybe this will help them to see how to manage BOTH illnesses without the complications we had.
Suzie
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DennisM1045
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Re: Re shakes, cold body temp & serotonine syn
« Reply #5 on: May 7th, 2008, 12:39pm » |
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Hi Suzie,
Thanks for taking such good care of my clusterbrother Dave. You supporters are an amazing breed. 
It sounds to me like you've found a good Neurologist. I hope his plan will lead you both to a better place.
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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welshchipmonk
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Re: Re shakes, cold body temp & serotonine syn
« Reply #6 on: May 7th, 2008, 1:14pm » |
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Thanks for that Denis.
I guess the journey of a career started 3 days into our honeymoon when he started to have the side effect of a brain cyst the size of a lemon. A month after that he was having brain surgery and its been a zig zag road ever since for the last 21 years. At least for the last 8 years we've had the correct diagnosis's for his problems which have all been side affects from the cyst and the damage it caused, the 12 years before that we were on our own with no idea what was wrong and dr's writing him off as a hypochondriac. I actually find dealing with his CH easier than when he has a severe meniers attack as the one thing I dont do well is the sound and smell of vomitting!!
Its awful to see him in such pain, but I understand why and whats going on because of this amazing site and all of your postings and you know that "this too will pass" until the next one that is............
I think all you guys are the hero's because you personally have to deal with this dragon and yet still have the generosity to help and support us newbies.
Mind you I do think he married me under false pretenses I'm still waiting for the health and wealth bit!!
Suzie
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| « Last Edit: May 7th, 2008, 1:16pm by welshchipmonk » |
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