I've asked about something kind of similar before, and suggestions were potential serotonin syndrome.

This is different - though maybe still potentially serotonin syndrome.

Last night Gary felt like he was freezing, and we covered him in blankets.  He started shivering.  After about half an hour, he was throwing off so much heat (though he still felt cold) we took his temperature.  It was 107.2 F.  We thought the thermometer was broken, so used a different one.  The thermometer wasn't broken.

We covered him in cool compresses, gave him aspirin, and he drank tons of water.  It slowly came down to 104.x then 103.x and after several hours he was finally down to 101.x.

This morning he was 97.

This afternoon he's still around 97 - but the left side of his body (his foot, leg, hand and arm) are hot to the touch - the right side of the body (the side affected by clusters) is cold to the touch.

????????????????????

The temperature changes are not coinciding with attacks.

Anyone else experience these wild temperature swings - or one side of the body seeming to be such a different temperature from the other?

Laurie

He needs to see a Dr. right away.  I am surprised he did not start having convulsions.

While in high cycle I do go through extreme body temperture changes......freezing one minute, burning up the next.  Today I feel like I have an internal heating pad installed in me.  My kids felt me and couldn't believe how hot I am to the touch.  I have never taken my temp to check, but 107 is extreme!!!  I would definately call the Dr. and have that checked out.  Any temp 103 and above in an adult can be very dangerous!!!

Take care,
Beth

Could it be the massive amounts of drugs he's doing.
?

         Potter

Actually, we saw a Doc this morning.  Just told us to cool him down if his temp spikes again, and if it's over 105 for more than an hour to get to an ER.


Potter wrote on Aug 5^th, 2008 at 7:00pm:

Could it be the massive amounts of drugs he's doing. ?          Potter

I guess it could be, though technically I don't know if the amount is "massive."  When he first saw the pain management doc he had him on much more.  Pain Management doc STARTED him at 75mcg/hour fentanyl patch and 600mcg fentora 4x/day.  He switched to actiq (also fentanyl buccal) the next month.  Now he's on 25mcg/hour patch and 8mg dilaudid 4x/day.  This has been the mix since Jan or Feb - so why the problems would start now, I'm not sure.

In fact, what has changed is that he's taking a bunch of supplements, including Rhodiola.  That he started taking about two weeks ago.  

We're seeing specialist MD nutritionist familiar with clusters on Monday.  Maybe he'll have some useful input.

Laurie

Supplements count as drugs.

             Potter

You mentioned somewhere recently that gary is addicted to narcotics  and are attempting to detox.  While detoxing you were adding the supplements to 'get something going'


If he is detoxing, couldn't it be coming 'down' off the meds that could be causing the strange temp fluctuations?  Did the doctor say anything or make any connections for you regarding the supplements and narcotics ?  Did he allude to any particular 'cause' of the temp changes?  If my doc just said go to ER if temp goes over 105 without offering some potential reasons  or hypotheses   I am not sure my doc would continue to be my 'trusted friend'

kelly

mezza wrote on Aug 5^th, 2008 at 9:43pm:

You mentioned somewhere recently that gary is addicted to narcotics  and are attempting to detox.  While detoxing you were adding the supplements to 'get something going' If he is detoxing, couldn't it be coming 'down' off the meds that could be causing the strange temp fluctuations?  Did the doctor say anything or make any connections for you regarding the supplements and narcotics ?  Did he allude to any particular 'cause' of the temp changes?  If my doc just said go to ER if temp goes over 105 without offering some potential reasons  or hypotheses   I am not sure my doc would continue to be my 'trusted friend' kelly

Garys_Girl wrote on Jul 31^st, 2008 at 2:57pm:

George, I could have sworn that thread was on the new message board!  I must be starting to have "senior moments"  ::) OK.  For those of you who remember, Gary is chronic since March 2006.  He gets 6 - 10 attacks a day, range k5 - k8 (usually), they usually last 40 minutes to 3 hours.  Some K9s and 10s in there.  His baseline is a K2/K3.  He's tried all the standard drugs, but not the lithium/verapamil combo.  I think the last neuro we saw didn't take him up high enough on the verap to begin with.  The pred taper provided no pain relief at all. He tried the DHE drip last June.  It made him VIOLENTLY ill.  He's had problems with IBS and a "bad stomach," but he lost about 35 pounds in six weeks.  He was vomiting 20 - 40 times a day.  It was so bad his teeth started eroding. He used to use caffeine and O2, but both stopped working.  He tried Kudzu - that seemed to help diminish the number of attacks and intensity of attacks, but it was really hard on his digestive system (as was the caffeine).   In the fall of 2006, he tried busting with shrooms and RC seeds.  It seemed to work at first.  He actually had a pain free week.  He continued to try busting through February 2007, but it helped less and less after the first trip. Out of desperation, he turned to narcotics in August 2007.  They bought him some much needed relief. But (obviously) they're not really working any more and now he's just addicted, and he wants off.  But the rebound attacks are so bad, we decided to get something rolling before he detoxes. Now that everything's arrived, here's the plan (and it includes stuff to deal with his gastro/IBS problem): Align Probiotic by P&G 300mg Rhodiola 3x per day - morning, afternoon, evening.  I got TerraCeutics Rhodiola - it is chocolate brown. TerraCeutics' "MegaMune" - three capsules all at night.  This amount contains: 500mg graviola extract 300mg Humic & Fulvic acid 300mg Rhodiola Rosea 250mg Agaricus extract 250mg Corolus Versicolor extract 100mg ginseng extract (80% ginenosides) 100mg Beta Glucan Ginger Root - 1.1mg in two capsules, one taken with lunch, one taken with dinner Solgar's Magnesium-Calcium 2:1, 1 tablets with each meal (3 tablets has 300mg calcium and 600mg magnesium) A "stress forumula" multi-vitamin, heavy in the Bs, required 2x per day, so once at breakfast and the other with the SleepMedic. TerraCeutics' SleepMedic, 2 capsules 1 hour before bedtime, which has: 250mg magnesium 150mg Gaba 100mg valerian root 100mg inositol 25mg Passion Flower 25mg Hops 100mg Lemon Balm 100mg L-Theanine 50mg B6 25mg 5HTP 1mg Melatonin And 2 5mg Melatonin tablets. We're also both taking 2 oz. of Acai juice with Blueberry and Raspberry in the morning and afternoon. He's agreed to give it 7 months. ***************************************** So his total Rhodiola Rosea will be 1.2g His total Melatonin will be 11mg His total Magnesium will be 850mg We've run this by our GP, who's OK with it all.  However, he did refer us to a nutritionist that is an MD, and we're seeing him next week.   Gary started this regimen 2 days ago. He's also going to see a therapist for stress management - and hopefully get his PTSD treated as well. Laurie

Now that there is a lot of shit.

           potter

Quote:

Pain Management doc STARTED him at 75mcg/hour fentanyl patch and 600mcg fentora 4x/day.  He switched to actiq (also fentanyl buccal) the next month.  Now he's on 25mcg/hour patch and 8mg dilaudid 4x/day.  This has been the mix since Jan or Feb -

Holy Shit !!!!!!!!   Add this to the list of the other stuff he swallowing...I'm surprised he's not dead.  And a temp. of 107  should have had him in convulsions.  

Good grief...Can you get him to another Dr. ....like FAST?

Linda_Howell wrote on Aug 5^th, 2008 at 11:12pm:

Quote: Pain Management doc STARTED him at 75mcg/hour fentanyl patch and 600mcg fentora 4x/day.  He switched to actiq (also fentanyl buccal) the next month.  Now he's on 25mcg/hour patch and 8mg dilaudid 4x/day.  This has been the mix since Jan or Feb - Holy Shit !!!!!!!!   Add this to the list of the other stuff he swallowing...I'm surprised he's not dead.  And a temp. of 107  should have had him in convulsions.   Good grief...Can you get him to another Dr. ....like FAST?

 If this post is for real this guy won't go .  He's a junkie.  8mg of Dilaudid a day for a year.  Yep junkie.

                   Potter

Potter wrote on Aug 6^th, 2008 at 10:13am:

Linda_Howell wrote on Aug 5th, 2008 at 11:12pm: Quote: Pain Management doc STARTED him at 75mcg/hour fentanyl patch and 600mcg fentora 4x/day.  He switched to actiq (also fentanyl buccal) the next month.  Now he's on 25mcg/hour patch and 8mg dilaudid 4x/day.  This has been the mix since Jan or Feb - Holy Shit !!!!!!!!   Add this to the list of the other stuff he swallowing...I'm surprised he's not dead.  And a temp. of 107  should have had him in convulsions.   Good grief...Can you get him to another Dr. ....like FAST?  If this post is for real this guy won't go .  He's a junkie.  8mg of Dilaudid a day for a year.  Yep junkie.                    Potter

Not to hammer on a fine point, but I think it's 8mg of dilaudid 4x a day for a year.

wrote on Aug 6^th, 2008 at 3:23pm:

Potter wrote on Aug 6th, 2008 at 10:13am: Linda_Howell wrote on Aug 5th, 2008 at 11:12pm: Quote: Pain Management doc STARTED him at 75mcg/hour fentanyl patch and 600mcg fentora 4x/day.  He switched to actiq (also fentanyl buccal) the next month.  Now he's on 25mcg/hour patch and 8mg dilaudid 4x/day.  This has been the mix since Jan or Feb - Holy Shit !!!!!!!!   Add this to the list of the other stuff he swallowing...I'm surprised he's not dead.  And a temp. of 107  should have had him in convulsions.   Good grief...Can you get him to another Dr. ....like FAST?  If this post is for real this guy won't go .  He's a junkie.  8mg of Dilaudid a day for a year.  Yep junkie.                    Potter Not to hammer on a fine point, but I think it's 8mg of dilaudid 4x a day for a year.

  Holy shit Brewman. I been a D junkie once in my life and that amount would keep ya so fucked up ya couldn't find yer ass with both hands.  I reread the whole post and I'm real skeptical.

           Potter

I was just surfing when this thread caught my attention. Now I am no expert, but, isnt 8mg's of dilaudid about the same as one half a grain of morphine??? If so,,,, wow!!!!!!!! This guy either has one HELL of tolerance built up, or, a doctor who is script happy for sure, or, you guys are right,,,,, junkie!  Just my opinion,  and you know what they say about opinions.  Tuck

Quote:

...that amount would keep ya so fucked up ya couldn't find yer ass with both hands.

Good thing you're not on it anymore. ;)

I gotta correct myself from my previous post. 8 mg's TIMES 4 times a day would be the same as a half a grain of morph. is that correct?????

wrote on Aug 6^th, 2008 at 4:40pm:

Quote: ...that amount would keep ya so fucked up ya couldn't find yer ass with both hands. Good thing you're not on it anymore. ;)

   I got no butt to lose.

               Potter

I really don't care if you want to categorize him as a junkie or not.  He is not working with a scrip happy pain management doctor.  The guy is a very reputable doc and has been rated as the best doc in this field on the state's lists of top docs numerous years in his 20+ years of practice.

Some of you are familiar with Gary's background if you've read my posts dating back to August of 2006.  The man needed a break, and for him the narcotics have provided that.  I'm glad he's still alive.

I'm also glad that none of you posting have felt you had to resort to this.  Others of you have, and thank you for contacting me via PM.

It's horrible to be in a position that you would make this decision.  Fortunately, Gary handles it well, and he is perfectly capable of locating his ass - with one or two hands.

************************************

We've stopped the supplements (other than the 2:1 Magnesium/Calcium).

Now he's hypothermic, though not dangerously so (96.8).

Thank you to those of you who have actually responded to the question.

Laurie

And thank you for your concern.  We did see Gary's GP the following morning though I didn't mention it in my initial post.  Just in case you remain concerned, our GP is aware of everything Gary is taking (we ran the supplement list by him prior to beginning the regimen).  Though we're still not sure any of the supplements were causing the problem, he agreed with us that it was a good idea to stop the supplements until we see the nutritionist (who is an MD) Monday afternoon.

In case something like this does happen to any of you, the GP (a Harvard grad, so not some slouch) said that if this happens again, if his temp is over 105 for more than an hour to get to the hospital, otherwise just work to break the fever.

Laurie

P.S.  I'm sorry I didn't provide all the details in my first post.  I'm not sure some of you noticed, but I wasn't asking for advice on what to do because he was experiencing large swings in his internal body temperature....and the event had already happened, it was not occurring at the time - and we'd already seen his doctor.  I was asking if any one else has experienced this.   Thx

Garys_Girl wrote on Aug 6^th, 2008 at 5:24pm:

...dating back to August of 2006.  The man needed a break, and for him the narcotics have provided that.  I'm glad he's still alive.

I'm glad he's still alive, too. But a two-year break provided by narcotics? That doesn't sound like the supervision of a responsible doctor.

I don't know where you got the impression it's two years - I joined in August 2006 when we finally figured out he has clusters.  This site walked us through many medications.  He's been chronic since March 2006.  When nothing worked, including busting, he turned to pain management at the advice of his last neurologist.  This was after the DHE drip in June, and trying traditional preventatives and abortives for another few months while vomiting his guts out in addition to the attacks.

So yes, this form of dealing with - or not dealing with - the pain is from the end of last year.  Yes, a long time.  Yes, the drugs are addictive.  But I credit him for wanting to get off, and for continuing to seek alternatives.  

As people here who support me point out, I can stock the arsenal of information, not make the decisions.

Laurie

Quote:

You mentioned somewhere recently that gary is addicted to narcotics  and are attempting to detox.

Quote:

So yes, this form of dealing with - or not dealing with - the pain is from the end of last year.  Yes, a long time.  Yes, the drugs are addictive.

Laurie..Gary is a grown man and should be able to decide for himself what treatment to use.  He CHOOSES to use narcotics and is now addicted.  Stop enableling him, making excuses, etc.  Almost everyone here can see what he's doing as a "NOT VERY GOOD THING"   (and can be life threatening)  People come here for support and info...It seems like you're just coming here for validation.   If I'm wrong...tell Gary to introduce himself and ask the questions here.


To answer your original question which several have already answered...A slight elevation in body temp...of course.  107 degrees....no way.

I'm done here.   ::)

Garys_Girl wrote on Aug 6^th, 2008 at 6:46pm:

I don't know where you got the impression it's two years...

Here:


Quote:

Some of you are familiar with Gary's background if you've read my posts dating back to August of 2006.

Just trying to make sense of it all.

Linda_Howell wrote on Aug 6^th, 2008 at 7:49pm:

I'm done here.   ::)

Me too, Linda.

Denial ain't just a river in Egypt.

wrote on Aug 6^th, 2008 at 8:13pm:

Linda_Howell wrote on Aug 6th, 2008 at 7:49pm: I'm done here.   ::) Me too, Linda. Denial ain't just a river in Egypt.

Course ya can't tell how deep the bullshit is from the surface. So just put on your waders and step right in.

       Potter

When the body core temperature reaches 105° F or higher, heat exhaustion followed by heat stroke or hyperthermia (also known as hyperpyrexia) can occur, especially where dehydration (in which case the body can not produce enough sweat to sufficiently cool down) also is present. Additionally, the use of some drugs — Ecstasy (MDMA, also called E, X or XTC), for example — can cause body temperature to rise to dangerously high levels.

Whatever is causing these wild fluctuations in body temperature--prescription drugs, supplements, a combination thereof, or something else altogether--it's bad.

It isn't typical of CH, and it sounds very dangerous.

It needs to be dealt with.

It doesn't matter what we say.  The only thing that matters is what you do.
Best,

George

Guess which part of the brain has a key role in controlling body temperature?  If you guessed hypothalamus, you would be correct.

I have had some problems controlling body temperature in cycle - I get very prone to heat exhaustion and have gotten sudden fevers even when indoors at normal temperatures.

Could it be something he is taking?  Maybe. Could also just be the dysfunction of the hypothalamus.

IMO, Gary needs to find some type of preventive med that gets the hypothalamus closer to normal in the way it functions.  

Laurie,

If I may ask a question about something not pertaining to your original question in this thread.



Garys_Girl wrote on Aug 6^th, 2008 at 6:46pm:

Yes, the drugs are addictive.  But I credit him for wanting to get off, and for continuing to seek alternatives.   As people here who support me point out, I can stock the arsenal of information, not make the decisions.

This was said to you Aug. of '06, one year prior to his pain management.  This was your response when you started the Nov. '07 thread asking for advise on his addiction.



Quote:

I need advice and don't know where else to turn Garys_Girl  « on: Nov 2nd, 2007, 7:39pm » ...you can only stock the arsenal - he has to chose the weapon.  Well, he chose.  And kept choosing.  And got to the end of the line.  And none of it worked.  And now the weapon owns him.  And it doesn't work. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This was the scenario ten months ago and in this thread you mention:


Garys_Girl wrote on Aug 6^th, 2008 at 5:24pm:

He is not working with a scrip happy pain management doctor.  The guy is a very reputable doc and has been rated as the best doc in this field on the state's lists of top docs numerous years in his 20+ years of practice.

While you say Gary has seen his GP and a nutritionist, I'd assume that starting before last November and continually through to the present you have brought up your inquiries about Gary's addiction to the pain managment doctor as well and he's made assessments?


The reason I ask is because in the Nov. '07 thread, you also said:


Quote:

I don't know what the future holds, but I do know we'll continue to face it together.

This is now the future from that thread.  Do you have an any assessment of the future from here?


I'll only make a comment from personal experience and consensus of others I sat with daily for many years.  Addiction don't get better.

Quit the narcotics and all the other horse feed. No wonder he's cookin with all that crap in him. Check into rehab. Get a real doc. [smiley=twocents.gif] [smiley=twocents.gif]
all the best
thebb

Listen, I know what people here think of the narcotics.  I haven't necessarily been happy with Gary's decisions, but I stand by him.  He's addicted, but he's not a junkie.  We're partners in business, we spend 24 hours a day together, and I know what he's on.  He's not as productive as he used to be, but he still works.  He's gotten his shit together enough since Dec/Jan to begin participating in life again.  He's back to work (thankfully we're able to principally telecommute), he helps around the house, he takes care of me when I'm sick, he helps care for our pets, and we still get out to see friends, and he still participates in our charity work.

There are times that wasn't the case, and I turned to this board for advice.  

But the advice to go into rehab or to leave my husband because I'm an enabler is quite useless.  I won't leave him because I love him and took a vow for better or worse, through sickness and health.  And with nothing to help him control the pain, what do you suggest he do?  THAT would be helpful, though other than trying the occipital nerve stimulation implant the Docs don't seem to have many suggestions at this point.

I haven't posted every step of what he's done and hasn't done along the way.  He's detoxed by himself twice since December, but the pain and the lack of any abortives to function drove him back.  Yes, there was shaking and vomiting - but nothing like these temperature swings.

Part of the problems Gary have faced along the way are NOT typical of cluster headaches, which is part of what is so frustrating.

I've also written before, I don't care if you think or if I am an enabler - when Gary's ready to find other ways of dealing with this, he will.  Just in case you haven't noticed, I've stopped asking for advice on how to get him to make different decisions.

I believe he was either experiencing a problem with serotonin syndrome, or his hypothalamus is just totally misfunctioning beyond the scope of cluster headaches.

You can attack me, you can attack him - whatever.  It's all just a distraction.  I'm here seeking answers, and when I have time I help support other people or answer their questions.  I did a lot of research when I first found the boards, and it's helpful to people new to the site.

******************

I've done some research since starting this thread.  Although it isn't a large amount of valerian in the sleep supplement, of everything in the supplements he started taking, I found that that could have contributed to the problem, which would have been, again, serotonin syndrome.

Or, Monty, as you pointed out, it's the anterior hypothalamus that controls body temp, so it may have nothing at all to do with serotonin syndrome, and it's just another of Gary's "atypical" problems.

Perhaps we should consider seeing an neuroendocrinologist.  That's something we haven't pursued.

Laurie

I am not attacking anyone. I call it like I read it. CH does not vary to the extent that narcotics work for him and no one else.
That being said, one does need something to abort the CH. Narcotics are not an abortive. Your treating a symtom, and that never works.
Of course your standing with your man. What else would you do? Kudo's for being there for him.
I would like to talk to him would that be possible?
406-535-4382
I am interested, did he detox before clusterbusting? Narcotics will block the effects. Let alone the rest of that crap. You should have him detox from all of that, with the docs help. Then bust it again.
all the best
thebb

He wasn't on narcotics when he busted.

I never said the narcotics work for him.  I said they help dull the pain enough to make him not suicidal from it.  There are certainly others - they just contact me via PM, not publicly, exactly because of what's going on in this thread.

Gary has shown no interest in participating in this board, and I doubt he'll call, but thank you for the offer.

Laurie

Quote:

Gary has shown no interest in participating in this board, and I doubt he'll call, but thank you for the offer.

That is too bad indeed, all one needs to get help, is to reach out. No man is an island. Many heads are better than one.  I cannot help someone that does not help themselves.

Quote:

He wasn't on narcotics when he busted.

I suspect then he was on all the other stuff you mentioned? These would also contribute to failure. Hope none of that stuff contraindicates the other.
I hate it for ya. :o
thebb

Nope.  That he just started a week or two ago.

He tried busting from Sep/Oct 06 - Feb 07.  He was using kudzu, melatonin, 02 and caffeine prior to that.  Before busting, he stopped the melatonin and kudzu at the recommendation of the busters, and relied just on the caffeine and the 02.

Laurie

Foolish me.  I should know...

Nov. '07

Quote:

Gary is suffering both from pain and from withdrawal as I write.   now he's just addicted and pissed off at himself about it. I just sit here and wait for him to either get his senses back and decide to quit the narcotics - or kill himself, whichever comes first? He's at the point where he knows they're making him insane and not helping, Gary got to the "I can't take it anymore" point on his own.  Thankfully, he was referring to the drugs and not life. Gary has shed a lot of tears with me the past few days - and not just in pain from the beast.

...there is not any problems with drugs until they run out.


Quote:

He's detoxed by himself twice since December, but the pain and the lack of any abortives to function drove him back.

Quote:

Now he's on 25mcg/hour patch and 8mg dilaudid 4x/day.  This has been the mix since Jan or Feb...

Quote:

He's gotten his shit together enough since Dec/Jan to begin participating in life again.

Quote:

It's all just a distraction.  I'm here seeking answers,...

From N.A.


Quote:

We dreamed of finding a magic formula that would solve our ultimate problem - ourselves.

Garys_Girl wrote on Jul 31^st, 2008 at 2:57pm:

Now that everything's arrived, here's the plan (and it includes stuff to deal with his gastro/IBS problem): Align Probiotic by P&G 300mg Rhodiola 3x per day - morning, afternoon, evening.  I got TerraCeutics Rhodiola - it is chocolate brown. TerraCeutics' "MegaMune" - three capsules all at night.  This amount contains: 500mg graviola extract 300mg Humic & Fulvic acid 300mg Rhodiola Rosea 250mg Agaricus extract 250mg Corolus Versicolor extract 100mg ginseng extract (80% ginenosides) 100mg Beta Glucan Ginger Root - 1.1mg in two capsules, one taken with lunch, one taken with dinner Solgar's Magnesium-Calcium 2:1, 1 tablets with each meal (3 tablets has 300mg calcium and 600mg magnesium) A "stress forumula" multi-vitamin, heavy in the Bs, required 2x per day, so once at breakfast and the other with the SleepMedic. TerraCeutics' SleepMedic, 2 capsules 1 hour before bedtime, which has: 250mg magnesium 150mg Gaba 100mg valerian root 100mg inositol 25mg Passion Flower 25mg Hops 100mg Lemon Balm 100mg L-Theanine 50mg B6 25mg 5HTP 1mg Melatonin And 2 5mg Melatonin tablets. We're also both taking 2 oz. of Acai juice with Blueberry and Raspberry in the morning and afternoon.

Garys_Girl wrote on Aug 7^th, 2008 at 2:53pm:

Perhaps we should consider seeing an neuroendocrinologist.  That's something we haven't pursued.

Ok then, g'day.  I got distracted somewhat here by the freight train.

Saying at the bottom of your posts:

"It's comin' like a freight train - can't you hear it?" - Gary

Kevin, fortunately for me he found a better balance.

Laurie

Garys_Girl wrote on Aug 7^th, 2008 at 6:23pm:

he found a better balance.

Then mission accomplished for Gary.  Having the manipulative abilities to use someone else's energies to take care of the needed diversions, distractions and such for life's interface is part of the toolkit for a cozy deal.  

You type well.  

Kevin, with my 258 posts, most of them questions, some of them frustration, I hardly think you're in a position to judge.  I really don't get your point, and I'm not sure why you care if my husband is manipulating me or not, or whether he's a junkie or not.

I come here seeking advice, sharing information, and supporting other supporters.

It's great of all of you to recommend that Gary go into rehab now, and that his life will improve without the narcotics.  

Anyone have any suggestions as to what he does after that to deal with the pain?

Thanks,

Laurie

Garys_Girl wrote on Aug 7^th, 2008 at 7:31pm:

Anyone have any suggestions as to what he does after that to deal with the pain?

Here is an isolated situation I ran across on the Supporter's Board prior to pain management that could offer hope.



Quote:

Sometimes Detoxing is the way to go Garys_Girl   « on: Aug 25th, 2006, 1:08pm » Well, after the terrible time both hubby and I were experiencing a (month?  few weeks?) ago, I have to say - all the advice to detox was the way to go.  I've got my hubby back.   It helps that he seems to be coming out of cycle (knock wood).  He's still having about one hit a week with constant shadows - but the detoxing improved his health, spirits, mood and overall temperament by leaps and bounds.   I just wanted to thank you all for the help, the support - and the suggestions! THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Laurie

- How about that verapamil and lithium combo or some sort of cocktail like that that you said he wasn't willing to try?  Sounds like he's been down just about every other avenue.  

Laurie- I am not  mad or frustrated with these threads just confused.  but that is not your problem but mine.  As I have been reading the posts- the perception that I had was of a loving wife who is desperate to get her and her husbands life back in order and of course for her husband to not be hurting anymore.  As time goes on though and the more I read , I believe that many suggestions have been made around possibilities for the future.  While detox or whatever  may not be the answer ( who am I to say?  don't know you or your husband)  people have said try this or that next.  The response has been that Gary isn't willing to try it yet.  So Gary remains in pain.


My confusion is just this-  what can we actually do to help at this point?  Is the help you are seeking validation or a recommendation for treatment options?  If its validation - you have gotten it and will continue to get it but lets call it that so we're clear what you need as his supporter.

If its other recommendations-  I believe that vets have replied and the response remain consistant.  It doesn't seem like there is much left to offer in that area-   Clearly,  lots of painkillers tried, he's gone to lots of doctors, he's tried busting, you have him on a special diet or supplements or whatever, he's tried a dose of verap-  people have suggested trying a new doctor, getting off the painkillers, detoxing etc etc etc., a proven cocktail etc

What else is left?  ( besides subocciptal and the cocktails or verap and whatever )  

this leads me to believe that what you are really seeking is for someone to validate the helpless feeling,    Providing more suggestions for treatment feels like kind of a set-up

I do truely hope that Gary's situation improves and I hope you get the much needed relief as well.  

Kelly

I really would like to talk to Gary. 2mg per hr. of dialodid and your a zombie.
Add the other many meds and herbs ,and you dont know come here from go sickem.
Gary's problem is all that herbal crap, and the narcotics. Hey Gary!!!!!!
Are you there??? You will take our help but not talk to us?? Whats up with that? My feelings are hurt. :o
all the best
thebb

Wow, what a bunch of jackasses.

Anyways, I find that my bodytemp is low of normal, and I have an intolerance for anything more than moderate temperatures. I sweat like a stick pig all year long at temps aboce the low 70's.

I have had some odd temperature incidents...not nearly as extreme (high 104), but short-lasting. No asnwer for why. I assumed that I was getting a hellish flu, but was completely asymptomatic. I was most likely on no supplements at the time. I have never taken narcotics either, outside of surgery.

GaWd wrote on Aug 8^th, 2008 at 11:06am:

Wow, what a bunch of jackasses.

:-X
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Laurie,

Frankly I cannot help much with the pain after all is said and done, but I certainly can offer first hand advice and information with regards to his addiction. I spent over a dozen years addicted to cocaine/crack and heroin. I have been there and done that, many times. From inpatient to outpatient rehabs, 12 steps, NA, you name it. I have now been clean for 13 years.

The first thing he needs to do is find it in himself to quit. The excuses he is using with regards to pain are bullshit. I made excuses too. People around me accepted and understood just like you are doing. It IS enabling and you DO need to stop. Right now you have your head on your shoulders more then he does, and you need to put your foot down. Don't accept the excuses he is giving you. Call the cops on his dealers so he can't get them anymore. I actually quit on my own, with no rehab or 12 steps, or NA, I just made up my mind. I was able to screw my dealer out of a bunch of money and take off. If you own a business it isn't as easy as just leaving, so you will need to attack your problems head on.

He is a junkie, don't kid yourself. There are functioning junkies. I was a functioning junkie, keeping 2 jobs. Just because a drug addict can assimilate themselves into society does not mean they don't have a problem.

But it is up to us to face it head on.

If you need to talk about the issue please feel free to PM me. This is not meant as an attack on you or him, I just want to help you two to be able to open your eyes and face this particular beast head on. While I can't help much with the other beast, I know the addiction animal very well... and was successful at taming it.

Quote:

wow what a bunch of jackasses

Would you care to explain that further?  






edited because i couldn't get quote right because I am a jackass :)

Sandt38, there are no dealers to call the cops on.  He is on prescription medication under the supervision of a pain management doctor - a reputable one - and with the knowledge of his GP, and at the recommendation of his neurologist.  We are partners in business and spend 24 hours a day together.

I do disagree with the use of the description of my husband as a junkie.  He is not using the drugs recreationally.

I do believe he continues to use them to avoid dealing with the CH, and have mentioned this.  As I wrote before, I cannot make him ready.  

Kelly, perhaps subconsciously I'm looking for validation.  I don't know.   Intellectually I have enough of an IQ to understand this is the last place to find it - I have been around long enough to witness that.  

It's just many of the responses here got the hair on the back of my neck up, and I defended him.  I was merely pointing out that it's not helpful and quite pointless for everyone to keep saying he needs to get off drugs now without suggesting anything further.  I think it's great that the people of this board do not support narcotics as a method of dealing with the CH.  I have a real problem with the way most of the people here express it.

The fact of the matter is that he hasn't tried the verapamil/lithium combo, so there is that hope.  When he's ready, he'll detox again and we'll head back to the neurologist.

But I wasn't looking for anything, actually, except information about violent body temperature changes.  Other posters brought up everything else, and I got drawn in.

But I've received some helpful PMs, did some research myself as I posted here, and we'll see what the Doc has to say on Monday.

My best,

Laurie

of course the best to you and gary too.  Hope you get it all sorted soon!  :)

kelly

Thanks Kelly!  

Laurie

wrote on Aug 8^th, 2008 at 12:09pm:

GaWd wrote on Aug 8th, 2008 at 11:06am: Wow, what a bunch of jackasses. :-X START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE An ironic bit of material to post considering the behavior of some in this thread... [quote]Would you care to explain that further?

Doesn't the content of many posts explain it enough? It looks like someone is asking for help and all people want to do in reaction to the questions is judge the person she is providing care to.

I have no doubt the man is a full-blown junkie, but I also have no doubt-from experience, mind you-that trashing his enabler publicly and humiliating her aren't going to get the dude clean. It seems that all people are doing in this pile-on session is beating someone up, and that's never cool. Pile-ons blow...and in this case, it likely makes things even worse for the woman.

Sorry if I offended, I just thought it was a crappy show.

Garys_Girl wrote on Aug 7^th, 2008 at 7:31pm:

I hardly think you're in a position to judge.  I really don't get your point, and I'm not sure why you care if my husband is manipulating me or not, or whether he's a junkie or not.

Show me where I've judged, cared, or named?



Because "judge" seems like a freely used word here.


GaWd wrote on Aug 8^th, 2008 at 10:03pm:

...all people want to do in reaction to the questions is judge...

Does it look something like this?


GaWd wrote on Aug 8^th, 2008 at 11:06am:

Wow, what a bunch of jackasses.

**Message stricken to hopefully end what has been an already too-ugly thread**

Hi Garys_Girl i just have a quick ? for you did the pain managment Dr. start him on the 75mcg/hr fentanyl without building it up from the 25 - 50 patch ?¿?  Terry (i have been using pain meds to help my chronic clusters for over 4 years to help me)

You don't build up with the fentanyl patch, you actually start out high and work your way down to the level you need.

GaWd wrote on Aug 9^th, 2008 at 12:49am:

an already too-ugly thread**

What you may have judged as be ugly may also be seen as an example to many of how one can defensively justify a predicament of addiction because legal prescriptions are given by a doctor.


Garys_Girl wrote on Aug 8^th, 2008 at 3:31pm:

He is on prescription medication under the supervision of a pain management doctor - a reputable one - ...

Resulting in your own assessment:


GaWd wrote on Aug 8^th, 2008 at 10:03pm:

I have no doubt the man is a full-blown junkie, ...

This is a cluster headache site.  You may see it would be very hard to suggest any aid for CH with the present state of affairs.  What has been termed a distraction by Laurie could be actually preventing much more further assistance.

If the ways and means aren't appealing enough, the intentions of support had once supplied this response from her:


Quote:

Sometimes Detoxing is the way to go Garys_Girl   « on: Aug 25th, 2006, 1:08pm » Well, after the terrible time both hubby and I were experiencing a (month?  few weeks?) ago, I have to say - all the advice to detox was the way to go.  I've got my hubby back.   It helps that he seems to be coming out of cycle (knock wood).  He's still having about one hit a week with constant shadows - but the detoxing improved his health, spirits, mood and overall temperament by leaps and bounds.   I just wanted to thank you all for the help, the support - and the suggestions! THANK YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Laurie

That is not ugly.  At present, there is an abundance of support ready and able to make that happen but maybe beyond the scope of this site, but there is.  Suggesting that maybe admitting the situation is a bit more than one alone can right again and pursuing a direction toward that support would be the start of more effective responses toward CH treatment.  


peace

I been keeping a eye on this topic as it is something  i have experience in all though recreational not medical (been clean 11 years) and i am very disappointed with some on here

While i agree Gary has a problem and i have no problem saying i don't believe it is all down to the pain that he stays on the narcotics we all have to agree that the guy is on them because of this shit that we all have to deal with,thankfully most of us get relief from the normal meds but Gary does not can any of us blame him for his choices we all know the pain of the beast more than we would like to.

i do believe that the narcotics are not the way for him to go and i think he should detox and try the other things hes refusing as i do think he is using this as a excuse to stay on the narcotics, however the fact still remains this is a guy in extreme pain and not just from the beast and deserves more respect than he is getting on this thread.

next time you have a kip 10 and the meds fail i hope you remember Gary and his wife and the pain they are feeling

I know none of you guys are bad people and i know it is hard to help people when they don't seem to help them selves but can we really blame him for getting him self in this bad place hes in all we can be is disappointed for the fact hes unwilling to try some other ways and besides Gary is not the one here asking for help and advice it is his wife and these are not her choices.

Laurie like i said in my PM i don't think these guys mean to be like this they just hate this crap we live with and when someone is refusing to take the proven meds and would rather take addictive meds it hurts these guys as we all feel for every single sufferer.

I think this thread should die now unless anyone has any answers for Laurie on the subject the thread is about.

take care and good luck to you and Gary

PF wishes to you all

To ==Audre== a BTW you do not start at the highest dose no no you have to start at the lowest and increase increase til pain relief occurs. My wife is a CNA on the neuroscience floor and also read this in many of the medical books here at home too. Terry
I have been chronic since Nov 1999 before that 17 years spring and fall only. Currently I wear the 75mcg/hr fentanyl pain patch and get (12) per month from my neuro the 10 mg morphine shots for the bad ones been using this to control my pain for over 3 years and has helped me get thur the days of my life. I can even drive a car 1/2 hour after a shot mow yard whatever I need to do each day. & also I am on SSD cause it wouldnt be fair for me or any employer or workers to to get and try hold a job at this time. Terry

gore2424 wrote on Aug 10^th, 2008 at 10:47am:

T Currently I wear the 75mcg/hr fentanyl pain patch and get (12) per month from my neuro the 10 mg morphine shots for the bad ones been using this to control my pain for over 3 years and has helped me get thur the days of my life. I can even drive a car 1/2 hour after a shot mow yard whatever I need to do each day.

    Not trying to stir this pot but I bet ya suck at mowing the yard much less driving a car with that much narcotics in your system.

      Potter

Ten years un-diagnosed, another ten years 'in the hands of the physicians' and I was probably prescribed every drug known to man, some drugs known only to women, and I still worry about the one marked "Poultry Only - Fines Apply".

In all that time, not one medication served to actually stop a headache - merely to cut it short, only so the remainder could come back to haunt me as quickly as the medication wore off.  

Often this was on top of the next headache, which was coming anyway, so there's a nice day shot to ribbons before it even began and so much for my job.

When things went from baddest to absolute worstest, and then some, I was lucky enough to find a doc who'd inject me with the combo I knew would work.  Details don't matter but narcotics were certainly involved.

To this day I can't tell you whether it actually stopped the headache, or it simply left me so stoned that the headache happened anyway and I wasn't there to recognise it.  

Trouble was, I started to enjoy it.

It's scarey, I know,  but from personal experience I can see how easily a quick-fix can become a monster of its own making.  

As to massive temperature fluctuations, you'd have to talk to my good friend DennyM.

I wasn't there at the time, and I deny everything she says, but it seems part of me was cooking while the rest was on ice as they took me to the hospital.

(At least she had the good sense to put the beer where it mattered and it chilled to perfection.)

As for your bloke, he needs help in making certain decisions for hiself.

We support our supporters, regardless the crimes committed by certain CHeads.

Welcome home,

Brian.

Quote:

Currently I wear the 75mcg/hr fentanyl pain patch and get (12) per month from my neuro the 10 mg morphine shots for the bad ones been using this to control my pain for over 3 years and has helped me get thur the days of my life. I can even drive a car 1/2 hour after a shot mow yard whatever I need to do each day. & also I am on SSD cause it wouldnt be fair for me or any employer or workers to to get and try hold a job at this time. Terry

[smiley=JAW_DROP.gif]

[smiley=furious.gif]


Besides the addiction...has anyone here heard of Narcotics rebounds????????  rebounds aren't just from Trex ya know.  

I've been chronic for 21 years.  21 long fucking years with only one or two days reprieve once and awhile.  I've never gone the narcotics route.  I've already got one monkey on my back  with CH...I surely don't  need two.

I won't be opening up this thread again.  It makes me too angry.

I have no problem mowing, driving, living my life on my current meds I have never gotten a rebound headache from what I am taking now and YES I know what they are I used to get them on another med I tried years ago "stadol" its the only med I took myself off of because I loved the high it gave me but hated the rebound headache after. Everyone is different what I use now controls my clusters NOT controls me. Imitrex,O2, stopped working for me from 1995 thur 2001 I have tried 67 different meds in many combos to control my pain in May 2002 I had my trigeminel nerve "CUT" at the Mayo Clinic in Minn. only to get a little over 4 months relief. I have been on current meds for over 3 years now and I have no problem doing whatever I have to do. Terry
BTW I knew I would get slammed for stating what I take to control MY pain but oh well it works for me and thats it bottom line.