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Garys_Girl
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Rapid drop in body temp and shaking?
« on: Apr 28th, 2008, 8:59pm »
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Well, we might be back to the diagnostic drawing board.
 
He's been diagnosed as "non-responsive to drug therapy a-typical chronic cluster headaches."  It's only happened a few times now, but as Gary describes it, it's like 2 k15s colliding at the same time - but what I see is he starts shaking uncontrollably and becomes very cold to the touch - like hypothermia or something, and he can't communicate.  They last from 15 minutes to half an hour.  I get heat pads, wrap him in about a billion blankets and get him on 02.
 
After the first one, he had a blood work-up and nothing unusual.  
 
Just wondering if anyone else has experienced this, or has any idea what might be happening?
 
It's super strange, because when he's having a BIG attack, he usually starts sweating his guts out and becomes really hot to the touch.
 
Thanks for any input,
 
Laurie
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Re: Rapid drop in body temp and shaking?
« Reply #1 on: Apr 28th, 2008, 9:19pm »
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hey there, im sorry to hear about the bad times, when i was in cycle i remember getting very cold chills and cold sweats during the hits, but as soon as the headache would let up the sweating and chills would stop as well. i could'nt find a ryhme or reason for it, and my doctor said it was from the very intense pain i was dealing with, also the fact that my heart rate was near to what it takes to running up and down a basketball court, so that was the reason for the sweating. when im getting a cluster headache, you would not want to talk to me. and talking to others at that time is very tough, but i have never not been able to speak when it comes. To the contrary my wife says i scream and rant during the headache even cry, but i really dont remeber too much of what i said, but i do know it is never nice. I hope this helps you. The one thing i found out is everytime i get a hit something different happens, its the same but different. feel better soon. coach bill
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Re: Rapid drop in body temp and shaking?
« Reply #2 on: Apr 28th, 2008, 10:58pm »
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Bill, thanks for the reply.  
 
He does get cold chills and cold sweats sometimes, but this was very different than that.  I've never seen anyone with hypothermia, but it seems like that's what it was.  I don't know the role of the hypothalamus or pituitary or serotonin in body temp.  But it just seems like a new dysfunction to add to the list.  (He's also got chronic vomiting).
 
I was hoping someone already had research on it.  It's not like the neuros around here have a clue.
 
Thanks for the good wishes.  He's been chronic for over two years now.  But we can still hope he'll feel better soon - despite the fact that it just keeps getting worse.  Hard not to get discouraged.  These days we just pray for a cycle.  Being episodic would be a blessing.  My god - even just a reduction in the pain to just shadows inbetween hits would be a nice break.
 
Wishing YOU pfdan!
 
My best,
 
Laurie
« Last Edit: Apr 28th, 2008, 11:01pm by Garys_Girl » IP Logged

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Re: Rapid drop in body temp and shaking?
« Reply #3 on: Apr 28th, 2008, 11:05pm »
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wow,  that is indeed a mystery.  i'm sorry you guys are going through this.   almost sounds like a siezure in the middle of a cluster HA.  
 
dont have any research for you, but i'll look around.  
 
for now just wanted to give you support.  the helplessness is the hardest point. Embarassed
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Re: Rapid drop in body temp and shaking?
« Reply #4 on: Apr 28th, 2008, 11:08pm »
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It does seem very much like a seizure.  But he was FREEZING to the touch.  His hands, his nose, his forehead - like he'd been standing outside in 0 degree weather for 15 - 20 minutes with nothing on.  
 
Thank you for your kind words.  
 
Laurie
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Re: Rapid drop in body temp and shaking?
« Reply #5 on: Apr 29th, 2008, 1:24am »
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I get really hot during a hit...but since the hypothalymus controls body temp, freezin' probably can happen too.
 
Good luck, hang in there.
 
PFDAN y'all
kathy
 
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Re: Rapid drop in body temp and shaking?
« Reply #6 on: Apr 29th, 2008, 1:24am »
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Hi Laurie
 
Any change in sleep patterns?
Is he taking any meds for mood or antidepressants?
Has he had a serotonin blood serum level check?
 
I was also non responsive to drug therapies for 30 years until RC seeds.
 
In all my years I havent experienced entirely all that you describe.
 During silent (or painless attacks) I do feel cold but mostly in the facial area. The skin goes pale and cold to the touch While I sweat at the same time.. I dont recall the whole body chilling.  
Nor do I recall this during full on attacks as the pain overides all other feelings.
 
If this is just in recent days, Is it possible he has a flu bug happening as well as CH? This could cause  serotonin levels to go wackier still.
 
Serotonin does play a large part in regulating body temps through the Hypothalamus and serotonin concentration is largest in the digestive system.
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Re: Rapid drop in body temp and shaking?
« Reply #7 on: Apr 29th, 2008, 2:07am »
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I remember discussion on one of your threads a while back regarding serotonin syndrome and just saw this.  
 
May or may not be relevant but a good warning for all.
 
http://www.nytimes.com/2007/02/27/health/27brody.html?_r=1&oref=slog in
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Re: Rapid drop in body temp and shaking?
« Reply #8 on: Apr 29th, 2008, 7:42am »
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on Apr 28th, 2008, 8:59pm, Garys_Girl wrote:
He's been diagnosed as "non-responsive to drug therapy a-typical chronic cluster headaches."  

 
Along the lines of what MJ asked, what treatment has he been receiving?
« Last Edit: Apr 29th, 2008, 8:54am by Kevin_M » IP Logged
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Re: Rapid drop in body temp and shaking?
« Reply #9 on: Apr 29th, 2008, 11:06am »
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Does he take verapimil?  One of the side effects of that can be shaking or tremors.
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Re: Rapid drop in body temp and shaking?
« Reply #10 on: Apr 29th, 2008, 12:53pm »
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Rapid rise in temp.  is my first symptom.
 
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Re: Rapid drop in body temp and shaking?
« Reply #11 on: Apr 29th, 2008, 2:19pm »
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Yes, hot sweats is usually what happens during the hits.
 
Thank you SO much for that article.  It was really helpful.  It sounds very much like this could be it.  Scary.
 
Not being a fan of conventional meds, the first route we took was Kudzu - then RC Seeds, then shrooms, which we worked with from Oct - Feb 2006/2007.  It seemed promising at first, but then provided no relief.  And getting hit during a trip was the limit of his ability to continue trying.  Especially when it didn't let up for days.
 
Right now he's not on anything except 02 and the fentanyl patch.  
 
Imitrex, verapamil, steroids, topomax, depakote, DHE drip in hospital, sansert, lithium, zoloft, zolmatriptan (sp?) - the nasal spray - elavil, occipital nerve blocks, cafergot, lyrica...
 
....and melatonin, taurine, magnesium, (with calcium and Ds), various other supplements - ginger pills, B vitamins....
 
have all been tried in various combinations and various lengths of time.
 
But in the end he decided just to try to get some relief, and pain management doc put him on fentanyl.  Which sort of helped a little bit.
 
We know.  Narcotics don't work.  But when the caffeine and 02 stopped working, he chose narcotics over suicide.
 
But it does sound like the fentanyl can cause the serotonin syndrome.
 
Again, thanks for the article.
 
Wishing you all PFDAN,
 
Laurie
« Last Edit: Apr 29th, 2008, 2:20pm by Garys_Girl » IP Logged

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Re: Rapid drop in body temp and shaking?
« Reply #12 on: Apr 29th, 2008, 8:18pm »
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I forgot to respond to the question about sleep patterns.  The answer is - sleep patterns?  What sleep patterns?
 
He had insomnia before CH.  Now?  He's lucky to get several bouts of 20 - 40 minutes at a time each night.  About once a month he'll fall asleep around 7:00am and sleep until about 1:00pm.  The downside to that is on those days he usually wakes up into a massive attack.
 
He is very sleep deprived and feels like he's losing his mind.  Which I'm sure he is.
 
Laurie
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Re: Rapid drop in body temp and shaking?
« Reply #13 on: Apr 29th, 2008, 9:21pm »
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God damn. I thought my cycle was the worst thing anyone could ever deal with, i dont know what i would do if i were facing kip 10s all day with nothing working to help, no trex, no 02, no RCseeds just the beast running rampant all day. I feel true sorrow for him. And i have never said or even thought about this before, but just like you i wish i could take a couple dances instead of him so he could get a break.  i dont know how he does it,  well im sorry i do know, he can make it because of YOU!!. just like my wife your an ANGEL who has been put into his life. thank god for supporters like you. i wish i could do more to help. coach bill
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Re: Rapid drop in body temp and shaking?
« Reply #14 on: Apr 29th, 2008, 11:22pm »
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During my more severe attacks I shake uncontrollably after the sweat. It sounds like a blood pressure issue with your husband to me.
 
I was also thinking Raynaud's phenomenon or Raynaud's disease.
 
Cheers,
 
Sean...............................
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Re: Rapid drop in body temp and shaking?
« Reply #15 on: Apr 30th, 2008, 1:56pm »
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on Apr 29th, 2008, 9:21pm, coach_bill wrote:
God damn. I thought my cycle was the worst thing anyone could ever deal with, i dont know what i would do if i were facing kip 10s all day with nothing working to help, no trex, no 02, no RCseeds just the beast running rampant all day. I feel true sorrow for him. And i have never said or even thought about this before, but just like you i wish i could take a couple dances instead of him so he could get a break.  i dont know how he does it,  well im sorry i do know, he can make it because of YOU!!. just like my wife your an ANGEL who has been put into his life. thank god for supporters like you. i wish i could do more to help. coach bill

 
Thank you for your incredibly kind words.  The flip-side of this is that I have to live with the CONSTANT guilt that he IS alive because of me - and if he weren't alive, he wouldn't be suffering like this.  He is in so much pain so much of the time.  And that is truly and understatement.
 
Add to that the vomiting.  It started with the DHE drip at the hospital last June.  He lost almost 30 pounds in 6 weeks.  At least that's down to just 3 -5x a day now.  
 
------------------------------------------------
 
Thanks for helping me figure out what this could be.  But as to the Raynaud's - I was having trouble with my hands a few years back, and it was initially diagnosed as Raynaud's.  
 
What Gary experienced was very, very different, and it affected his whole body, not just his hands or feet.  His nose was like ice.
 
Maybe serotonin syndrome - maybe hypothalamus gone wild.  I just hope it doesn't happen again.  It was very scary.
 
Laurie
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Re: Rapid drop in body temp and shaking?
« Reply #16 on: Apr 30th, 2008, 7:35pm »
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Hi Laurie,
 
I'm not sure he's receiving appropriate treatment, the patch isn't something that most nuerologists will prescribe. The only reason I say that is because it doesn't help with clusters.
 
The meds that you take to "prevent" clusters sometimes don't work, however they might work on a different occation, or vise versa, your meds will stop working and we have to change up. We also do combinations, like a med cocktail, and keep trying until something breaks the cycle. The patch won't do that, there's no hope there at all, and its not helping him.
 
I think you should try a different nuero, and let him give it a go. I've had many docs, and not all have the knowledge to treat us successfully unfortunately.
 
Sean................................
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Re: Rapid drop in body temp and shaking?
« Reply #17 on: Apr 30th, 2008, 7:50pm »
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  While I truly understand and sympathize with your...and his frustration hon, that Fentanyl  patch is certainly not the answer and could be causing him more grief than he needs.
 
   My daughter-in-law is an attorney and is, at this moment in litigation over that patch and the deaths and suffering it has caused for a long time now.  
 
     Time for a different approach, different Doctor?
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Re: Rapid drop in body temp and shaking?
« Reply #18 on: Apr 30th, 2008, 8:03pm »
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Linda
 
When i get hit with the mother load in the middle of the night I too get cold, I don't know whether I get cold to the touch because I can't tel but I shiver like I'm up north in a snow storm. This lasts for about 45 minutes to an hour and it is horrific.  That's during the real real bad ones. The littler ones I get hot. I have a series of 3 to 4 of the smaller ones followed by the big mother.  I know it sounds wierd but that's what happens.
 
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Re: Rapid drop in body temp and shaking?
« Reply #19 on: Apr 30th, 2008, 9:43pm »
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on Apr 30th, 2008, 7:35pm, Sean_C wrote:
Hi Laurie,
 
I'm not sure he's receiving appropriate treatment, the patch isn't something that most nuerologists will prescribe. The only reason I say that is because it doesn't help with clusters.
 
The meds that you take to "prevent" clusters sometimes don't work, however they might work on a different occation, or vise versa, your meds will stop working and we have to change up. We also do combinations, like a med cocktail, and keep trying until something breaks the cycle. The patch won't do that, there's no hope there at all, and its not helping him.
 
I think you should try a different nuero, and let him give it a go. I've had many docs, and not all have the knowledge to treat us successfully unfortunately.
 
Sean................................

 
No question he's not receiving proper treatment.   Right now he's not receiving any treatment.
 
And we know the fentanyl is probably - at this point - doing more harm than good.  But right now it's both a question of physical dependence and mental comfort.  He'd been through several circuits of traditional preventatives and various cocktails, and as the last resort went to the hospital for the DHE drip.  This not only did not break the cycle (which is now over 2 years old), it added the component of chronic vomiting.  I think I mentioned earlier he lost about 30 pounds in six weeks.  9 months later, it's down to throwing up "just" 3 - 5x a day.
 
But the man was getting a minimum of 6 hits a day, usually 10, most of them K5 - K8, definitely a lot of k9s, and sprinkle in a 10 every month or so.  He was/is regularly getting 3 - 5 hour hits - one of them was 8 hours.  There was no pain free time between hits, and what the year before had been shadows had become a constant K2 - K4.
 
He's been chronic since March of 2006.  I know there are people here who have been chronic for 10, 20 and 30 years - but nothing, and I mean nothing, was helping the pain.  Caffeine stopped working (and was probably causing rebounds), and the 02 stopped working.  He was literally losing his mind from pain and lack of sleep.  The "I can't take it any more" was a mantra.  I became afraid to sleep through the night for fear he'd take his life - and who could blame him?
 
His neuro told him he couldn't do any more for him, and that he should see a pain management doc to just help him deal with the pain.  So that's what he did.
 
Of course it provided no pain free time.  But it brought the all-the-time pain down to K1 - K2, and it lowered the intensity of the attacks.  The guy prescribed fentora (buccal fentanyl) for the "break through" attacks - which, thankfully we can't afford and insurance won't pay for, because it sent him to the moon.  But it bought him some "care free" time - a few weeks when he didn't care as much that he was in so much pain.  It's not a lot of fun watching someone you love so much being reduced to a teenage-like state high as a kite - but he needed a break, and no one and nothing else provided it.  
 
Even to clusterheads, his pain may not sound believable.  But he broke several toes and several bones in his foot at Thanksgiving, and wouldn't go to the hospital.  About a week later, he had his pain management appointment.  Doc walks in, and Gary says, "Oh Doc, I think I broke some bones - can you take a look?"  Well the toes were obviously broken.  Doc just looked at him and shook his head.  Gary had to leave to go throw up, and I totally broke down and started crying.  Doc said I'm married to a nut - but an amazing nut.  In his 23 years of practicing pain management, he believes he's never met anyone with the pain tolerance of my husband.   He's "never seen anything like it."  He's had several attacks at the guy's office.
 
Gary was in the military in the Middle East in an active combat unit, and has that "walk it off" mentality.  He was a heroine addict from the age of 12 - 14.  The last thing on earth he would ever chose is narcotics - especially knowing - thanks to this board - that they don't USUALLY help.  There are a few clusterheads for whom they make life liveable.
 
I'm defending his decision because it helped keep him alive.  He needed a break, but the little relief he was getting is gone.  And it's time to hit the Suboxone and decide where to go from here.
 
We're waiting to hear back from the Jefferson Headache clinic.  It's a haul from here - but we can make it there and back in a day.  I just hope he doesn't have to wait like 3 months for an appointment.
 
Laurie
 
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Re: Rapid drop in body temp and shaking?
« Reply #20 on: Apr 30th, 2008, 10:17pm »
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   I wish you both well.
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Re: Rapid drop in body temp and shaking?
« Reply #21 on: May 1st, 2008, 4:48pm »
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Thanks, Linda.
 
We haven't heard back from Jefferson yet to schedule his appt.
 
Laurie
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Re: Rapid drop in body temp and shaking?
« Reply #22 on: May 1st, 2008, 10:36pm »
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Hey Laurie,
 
Wow!!! I'm blown away with all you and Gary are going through... Please see have Gary see his doctor about the shakes... There's a lot of variables here that need to be examined carefully by a medical professional.
 
Above all, hang in there...  you're just the kind of cluster headache supporter we need.  You may be getting a PM from Dr. Annette Do, MD.  Do follow up if you get a PM from her.
 
Take care and check your PM.  I've left one for you as well.
 
V/R, Batch
 
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Re: Rapid drop in body temp and shaking?
« Reply #23 on: May 1st, 2008, 11:03pm »
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Laurie
Hope you hear back from Jefferson soon.  I have an appt on July 22nd.   I scheduled it almost a month ago.  That was the soonest they could take me.  I'll be glad to share my experience afte rmy appt.
 
As far as the body temp discussion, all I can ad is I can get hot at the start.  When it ends, I tend to start shivering because I get so cold.  Usually where off pretty quickly for me.  Your doing a great job as a supporter.  He is one lucky SOB to have you but unlucky to be one of us.
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Re: Rapid drop in body temp and shaking?
« Reply #24 on: May 2nd, 2008, 12:06am »
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Hi Laurie
 
Please check your PM.
 
HUGS
 
Annette
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