Glad to hear you're hanging in there.  Did you ever get the appt moved back to March?  Or are we still looking at April?  I sure hope you kicked some Sandy butt and got it moved up!!!!!!!!!!!!

Glad to hear Phil's BP is doing well. We actually have one of those automated cuffs.  But it was just like with the thermometer - the fist time Gary hit 107, we thought the thermometer was broken.  So when the cuff came back with that really low BP, we thought it was broken.  That it wouldn't come up with numbers for my BP kind of confirmed that in our minds.  But no...  it's working fine.  Just like the thermometer was.   

Laurie

My update post is one of the ones that got lost in the crash, so here it is again!

Here's the summary:

1) there are conditions that cause intermittent fevers, but they are rare, tropical type diseases, and Gary doesn't have the exposure profile to even consider searching for them;

2) Gary does have problems with sinusitis, but really it could only be contributing to the CH pain and not causing it, and it cannot account for the fevers;

3) Temps that high and that temporary are what are usually referred to as "central fevers," and infections usually do not cause them. Meningitis maybe, but he has no other symptoms, and if it were bacterial he'd already be dead, and it would be one weird rare version of viral, though worth doing the spinal to check just to make sure;

4) Central fevers are some other kind of brain dysfunction, and as we already know the hypothalamus controls body temps, and the hypothalamus is the seat of the problem in clusters... and there are such things as just "unexplained" central fevers.  If we can find a neurologist that can figure out what's wrong in his hypothalamus, it may treat both the fevers and the clusters - he doesn't have anyone to recommend.

GREAT.

So I guess what we need to find is a neuro that is NOT a headache specialist. We don't even know how to begin the search.

The guy exuded competence, spent 1 1/2 hours with us going through EVERYTHING with Gary, explained all the issues, and by the end, I was crying almost uncontrollably. I felt like a balloon that just got popped. Gary was OK, because he expected nothing, but I was hoping more than I guess I was aware of....

But he thinks Gary should see the Montefiore infectious disease doc, but now I have no hopes there either. So they'll arrange the spinal. And it'll find nothing either.

Laurie

Laurie as always I'm thinking of the two of you and praying that Gary gets some kind of break soon.

Keep us posted on everything.

I hope you make it too sweetie.  Oh how Gary needs a break.  I just pray that it comes soon.

Love to you both 

Wondering how you all are doing......anxious for an update.

Sorry.  Been too busy, too depressed, and Gary's been so beaten up.

They canceled the appointment.  It was beyond devastating.  It has been rescheduled for this Thursday. 

This was another weekend with four fevers each in excess of 105 between Fri night and Mon morning.  He's also been headbanging almost non stop.

We did get the new 02 set up with very high flow rates available to him.  It isn't helping either.

He wasn't able to make the last MRA appointment, so we've restarted the insurance authorization on that again.

Did get the sleep study approved, just got the message, so get to schedule that tomorrow.

It is so hard to watch this.

Laurie

I am so glad that you posted.  I've been worried about you guys.

My heart is just breaking for the two of you.  I just keep hoping and praying that something positive happens and this nightmare will be over for you guys. 

Hang tough Laurie.

Here's some much need hugs for the both of you   

And as always you're in my thoughts and prayers.

FINALLY.  OK.  This IS the "go to" guy for "difficult cases."  Know we know why it's so difficult to get into see him - he is not a usual "high volume" doctor.  He does primarily research, publishes a lot, and sees six patients a week.  He focuses on very few people at a time.  So that's good.

The news from the Montefiore ID doc is....  time.  IF it is an infection, he can probably figure out what.  BUT given Gary's history, it could be a lot of things, and he's got to start with narrowing down the options.  It does NOT matter that he was where he traveled even if it was 20 or 30 years ago, there are things that can be dormant that long.  He HAS seen these very high intermittent fevers before, but there are "literally a million things that can cause them."

If he rules out infection, then we're left with central fevers.  He is wondering why the neuro has not ordered an MRI of just the hypothalamus, especially as he knows we have access now to a high res machine.  Given his sinus problems, he thinks further work should be done there, though just for Gary's health and well being, because that is not a potential source of the fever problem.

BUT... if we're left with Central Fevers (a neurologic event), then he may still be able to treat them symptomatically.  He said two tylenol a day probably wouldn't be the solution, and he does NOT want Gary to try this now.  He wants us to take his temp every four hours for the next two weeks while I get every medical record we've got for Gary from the past five years transferred to him, especially the recent cardiac stuff, all diagnostics, and all of his GI stuff.

So he's going to review the files when he gets them (next week, which gives him a week to go through everything), see Gary again in two weeks, he'll review the current temperature pattern, and decide what tests to do from there.

So it seems like he's in the right hands.  But he's going to have to keep finding the will to push on, and some days that is really difficult. 

We're not sure if he went never-a-minute of pain free time in Jan or Feb of 2007, but we have definitely passed the two-year mark on it, and today is the exact day we celebrate his third year of going chronic with daily hits.

Laurie

Finaly!!!  At least you've got sometone who is trying to help.

Keep up posted, please.

Love ya,
Jackie

Well, after hospitalization and a gazillion tests, spinal, being a serious pin cushion, being hooked up to all kinds of monitoring things.... we still don't know what's causing the fevers.

The MRA showed no anomalies.

The sleep study... was not the right place.  This center isn't approved by our insurance (though the DOCTORS there are  ) and they deal with people who sleep too much.  And you have to sleep during the study.  Gary doesn't sleep, so there's no study.  Doc's office is working on finding a different place, though we don't know if somewhere you don't need to sleep for the study exists.

Gary's FINALLY started lithium.  It's too soon to tell if it's going to help.

He's sill in pain 24 hours a day, still averaging 7 - 8 attacks a day. 

We're negotiating on what to do next.  I think he's going to give the lithium a month.  Maybe even mix it with topomax (which didn't work on its own).  We'll see what other bright ideas the montefiore neuro has on the 29th.  But the thinking is that if the lithium, in combo with something else or not, doesn't work, he'll probably chuck the neuro and try shrooms again.  He'll be on only protonix, so we'd know for sure if it will help or not.

If that doesn't work.... after that?  He probably goes back to the narcotics again for a while.  He doesn't want to continue living like this.  I don't blame him.  His quality of life is very low.

Laurie

Thankfully, they're back down to 1 - 2 per week.

But from "the beginning" (once we saw in ID specialist) the thinking has been that they are "central fevers," not caused by an infection, but caused by a malfunctioning hypothalamus, for which there is no cure.

Laurie

Don, that's really sweet, and very appreciated.  Hope you're still uncrapping!

Laurie