When the pain gets the worst, he starts coming up with these really insane ideas.  Obviously if he's talking during an attack, I just listen.  But it is just SO GD heartbraking.  He's taken to punching himself in the face quite a lot recently.  He's pretty sure (at the time) he can jog something back into place.  But most of his ideas make me really cringe.  I just thank God that he hasn't actually tried any.  

The worst was when he pulled the tooth the dentist refused to pull (there was nothing wrong with it.  Of course he missed part of the root, so that had to be fixed.  But other crazy schemes include getting hold of a needle to insert it directly into his sinus.    The worst one was getting pliers and a razor blade to relieve the puffy eye, and, if necessary his eyelid.

Thankfully, again, he does come to his senses.  But it is just so hard and so wearing to listen to all the incredibly self-destructive things we wants to due when living in the middle of the illogic of the pain.

I just REALLY wish we could swap the pain every other week!!!!!!!!!!!!!  I mean - if Gary could know there's some pain free relief for a week at a time - I'd pay anything if we could find Frankenstien's doctor to create a method to do this!  (See, I like my crazy schemes MUCH better!)

   GD it all.

Laurie

Laurie,

I know the feeling of wanting to take your share of hits.  I've wished it thousands of times....they probably wouldn't allow it if we could.  Clusterheads are a tough bunch.

Now....Blake, when he first became chronic, would display some of the same behavior of self inflicted pain.  He would pound his head on an object hard enough to knock himself out.  We had a little 'visit' about this and he stoppped doing it.  I told him clusterheadaches are horrid but adding additional physical problems is not the answer.

Good luck.....sure wish you all could find some relief!

Jackie

Thanks.  (((((((((((((((((((hugs))))))))))))))))))))))  It really just helps to get it out there to people who understand.  We are both in therapy, and my therapist (who has fibromyalgia) just says to listen - and make sure he doesn't follow through.  He won't.  He's promised he won't, and he keeps his promises to me.  But it doesn't stop the imagination.  I'm sure it helps him to "get it out there" too.

Paul:  We did get to that point.  His neuro gave up on him in late 2007.  Gary hadn't had a pain free minute since sometime early 2007 and had already tried the alternative methods (which did provide pain free relief in late 2006 but then stopped working).

We thought his neuro knew what he was doing - one of the neuros in the practice suffers from CH!  BUT - the guy never tried lithium on Gary!  And never had his testosterone levels checked!  AND instead of referring him to a headache clinic, he referred him to pain management.

He just detoxed in September.   The narcotics were a mixed experience.  He got some VERY much needed relief - and he actually got some "pass out" sleep, which he also desperately needed.  But he went through periods of total lethargy (which is when I'd turn up here) - but it also gave him an ability to focus in ways he hadn't been able to for a long time because it did, in fact, push the pain back.  So it was a mix of "get a bunch of work done" and "get not much done."  Of course, it didn't STOP the pain or prevent it from coming, and that's the problem with narcotics.

But he hated the fact he was physically dependent on the drugs, so detoxed in September in anticipation of his appointment with a new neuro at the Montefiore Headache Center at the end of October.

We've been keeping a really detailed headache journal since the end of August. 

Bottom line?  He gets no pain free time.  He gets very little sleep.  He spends 32% of his awake day in cluster activity, average of K7.8, averaging 7 hits a day.

Doc is scaling him up on verapamil again, but he has a lot of other things wrong with him, including terrible GI problems/sensitivity, IBS - and horrible fever episodes (over a 3 - 4 hour period his temp spikes up to 103 - 107 degrees with no regularity and no relationship to cluster acitivity), that we've been seeing infectious disease docs to figure out.  But there just aren't any competent ones out here.  His Montefiore Doc is hopefully getting something set up with an ID doc there.  He needs a spinal to rule out meningitis.  And he suffered from Bell's Palsy in 2000/2001, and I'm wondering if BP really is caused by a virus, maybe it's some weird flare-up not manifesting the normal way.  But again - the only way to discern that is going to be a spinal.  He's had about a gazillion blood tests over the past few months.  ALL his levels are normal, nothing grew in cultures, etc. etc. etc.

But right at the moment Gary doesn't want to go back to the narcotic route. 

I REALLY hope the Montefiore neuro is going to prescribe lithium tomorrow.  And he's back on verapamil - just ramping REALLY slowly to avoid the GI issues.  So it's going to take months to get back up to what could be an effective dose.  Gary seems to be very med tolerant, so I think the 480mg the last neuro had him on is nowhere near what would be an effective dose for him.  If it's going to work, my bet it'll be 960 or even 1200mg that's going to be his number.  But we'll see.

Thanks again for all the support.  I just need to vent every once in a while.

(((((((((((((((((((((((((((((((hugs)))))))))))))))))))))))))))))))))))

Laurie

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LMAO, Jackie.  A "little visit"  eh?   Laurie,  maybe it's time for you to do that with Gary regarding his crazy solutions?

Laurie, I am sorry to hear Gary's having such a hard time...i have been there...i have dealt with kidney stones many times over the years and i would look actually forward to the morphine because it would not only dull the kidney pain but also give me short term CH relief and rest...almost sounds sick when i write this now that i am having the best 5 day streak of low level hits in months.

With the fever issues and GI stuff that has to get worked out...just further complicates and frustrates....hang in there and keep pushing for the good doctors.

Wishing you both the best.
Paul

Linda, I'm sure it's just him venting - rather, fantasizing in a weird, dark way - during an attack.  I may have written it incorrectly - he didn't go get pliers and a razor blade.  He was "merely" speculating about it.  I didn't have to stop him from doing anything.  But when he gets a string of really bad days, the ideas pop out, and it gets tough.  So I needed to vent.  But I'm not feeling like he's done anything that would need "a little visit."   

And the tooth pull was a few years before we knew he had clusters and it wasn't during an attack.  The dentist refused to pull his tooth and he was convinced the pain that he was sometimes getting had to due with the tooth. 

Quote:


I'm quite sure it would, and I know you're right.  But my pushing won't help.  When he's ready, he'll come.  I'm just happy that he's been lurking!  In fact, he registered recently (DeathsHead).  I know someone PMd him and I think he wrote back.

I'm SURE my writing about stuff like this makes him uncomfortable - especially if he's around and reads it.  But I also know he understands that even if he doesn't feel a need to share with others who understand what he's going through (yet), I do.

He was in the army many years, and apart from his insanely stoic "I need to be a man about this" there is an actual complication, and that is the problem that the computer screen can send him spinning. 

You do see how much time he spends in attack - it's crazy.  Inbetween attacks he's at a high level of shadowing pain.  ...and the computer is our tool for work.  It's tough enough for him to keep up on the markets, news around the world and get morning notes together.  I really don't know what we'd/he'd be doing if we weren't partners in biz, because I help get things together, do the editing and publishing.  There are plenty of times I read out loud the stuff he'd be looking up and I write up what he wants to say.

The other aspect of our work is talking on the phone.  Just getting notes together and out can take it out of him, and talking to customers and pretending he's not in pain is very draining.  From that perspective, Paul's right.  It's a really tough road to hoe with nothing to help or stop the pain.

So of course he'd benefit from talking to, sharing with, and interacting with other clusterheads.  He knows I really want him to.  But I also understand that when he's not cross-eyed with pain, he may not want to be on the computer or the phone.  And he is just not a "reach out" kind of guy when it comes to his needs.  Intellectually, he knows interacting will benefit him.  Emotionally, he's still trying to be a soldier about it.

He's taken a couple of steps toward interacting, and I'm glad for that.  He's slowly making his way here. 

But if you PM him, when he logs on again he'll probably write back. 

Laurie