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

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:


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:


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

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


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:


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.

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

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

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

Kevin, fortunately for me he found a better balance.

Laurie

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

- 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

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.

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.

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

Thanks Kelly! 

Laurie

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


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:



Does it look something like this?

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