Good luck to the both of you.

Your good thoughts and support are amazing.  But fate had different plans in store yet again.

Limo and driver showed up as planned.  We live in a very rural area, so once we make it to town for the final turn onto the road that takes us to I-80, we're turning left.... and SLAM.  Someone was traveling at least 50mph on a 15mph road.  Gary got slammed into the side of the car, I didn't hit anything but the floor.  We just got back from the local hospital.  Concussion.  No neck damage.

Obviously we don't have to pay for this trip! 

Next available appointment?  With ANY doctor in that dept?  Feb 23.

I started crying and couldn't stop.

Laurie

Oh Laurie...

I'm glad things weren't any worse.  I agree with Jackie......    No luck would be better wouldn't it?

Well, now we''ll look ahead to the 23rd.  Things just HAVE to turn around.

Take care of yourself,

Jeannie

That a girl......a good attitude will go a long way.

Love ya,
Jackie

Hi Laurie,

Iknow the feeling when bad luck seems to be never ending. So much so that when it does you can't trust and don't enjoy good times because they are just a blind for the next let down.
I have got to admit that I haven't read this post in detail so I'm sorry if I am saying something others have or just plain off beam.

When I have been in something of a similar situation of never ending 'bad luck' hit after hit and like a sweat ridden rag it's hard to focus, let alone see whats around you.

I remember  a long time ago when I worked in an old building that the cellar had been treated with anti fungus agent in the plaster. The building always smelt strange to me but not really to anyone else.  Guess what, I started to get hit. Always thought I had allergies to certain sprays like anti fungus used by farmers in the English countryside in September time. Then of course the inevitable hits began. In those days I had nothing but myself and a boat, hot towels, pacing and madness for weeks on end. I've had these headaches since I was a child. I can remember them as far back as about 8 or 9.They seem worse now. Then they did not last so long.

Sometimes it's worth looking at all the basic things in your physical locality, and ask. Is it worse since I've been here, done this job, had this diet, had that illness, tried this and that. Then change one of them and see. It sounds from Gary's experience that there is a constant trigger going on. We all know we are not the same with the exception of the pain so it could be something you are already sitting on that just may help.

There is a phrase in a therapy called NLP which sums up what I am saying . If you can't change a problem change where you are standing
and see it from a different place.

Rubbish. I hope not and it has helped me.

Whatever it does I send good thoughts your way.

Ellick.

dhjacks, we are VERY lucky to have each other!   

Ellick, I thank you so much for taking the time to share that.  And believe me, we've done that!  However.... after finally getting him diagnosed in 2006 (he'd gone chronic), we realized these date back to at least 1999.  They were never "organized" into periods of hits and not hits - just sporadic stuff, always at night - until he went chronic.  

When they first started, we were up in Northern WI.  We lived on the road, full time, in our RV.  Winters in the south, summers in the north.    In 2004 we moved into a house in Northern NJ.  In 2007, we moved homes.  Last year, we moved back into the RV.  We just can't find anything consistent in our environment - even since he went chronic.  Did diet eliminations for weeks/months at a time and other than alcohol haven't found any triggers.  He's not allergic to anything (other than bee stings and jelly fish).  If it's something in the environment... we haven't found it.  Unless it's me.  

I become more and more convinced it is something else that he has - perhaps related to the fevers he's been experiencing - that are causing the clusters, thus technically what he has are "cluster like" headaches.  It would explain why he doesn't respond to meds, why his blood work is normal...  but we just haven't been to the right people to figure it out yet.

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

So here's where things stand.  The neuro appt yesterday was just another bummer.  Gary told him what happened on the depakote (things got worse) - and the guy says, "Yes, it's rare, but it does happen."  GREAT.    Now wants him on dopymax with Frova (does he not understand that none of the triptans have done anything?  And Gary has TRIED topomax before, and we pointed that out....)  so... after the cardiologist (that was supposed to be today) and after the MRA (tomorrow am), he wants Gary to call and he'll discuss putting him on lithium.

He's being really thorough, and he is a very knowledgeable doctor.  But as Gary says, he's going SO slowly that he's (Gary is) just going to end up dead.

Big winter ice storm up here.... so cardiologist office called first thing this am to reschedule.  Of course.  At least it's this Friday, not three weeks from now, right?

And MRA place called to confirm today that he's on for tomorrow morning.  It's the same place he had the MRI done, so it's a 1.5 tesla machine, so that's good.

AND... searched.... and found another infectious disease doc that is NOT part of the stupid group or the not a very nice person group.... and got an appointment for one week earlier than the other one, so we got Feb 16 to look forward to.

AND... searched the sufferer recommended docs again...  found one a little over an hour east and south of here that is actually a neuro, not a GP, and he agreed to fit Gary in on Feb 4!  So we'll see what happens.  He can't see two different neuros on an ongoing basis, but it'd be nice to have one in NJ.  But maybe having a choice will be a good thing for him.

Meanwhile... he's had a couple of days of below normal temps and no fever spikes.  I told him he felt hot today.  Took his temp - and it was 98.8.  

Finally.... I figure that with all these fevers he's been running, he's helping us cut down massively on our propane bill this winter.

Laurie

I know that this is an older post, but my wife has just found out that her thryoid level is low at 0.01 and was just wondering if this could affect her chs.

OK - Found it.  This was in regards to an underactive thyroid, but anything out of the normal range is worth looking into!

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Laurie

Hi Laurie.  I was wondering how things were going for Gary.  I sure hope through all of this that they finally figure out was is causing Gary to have those fevers.

Good luck with all the doc appts. and as always keeping you two in my thoughts.

Keep us posted!!!!

Hi Laurie!

Thinking of you guys.   Please let us know how things are!

hugs,

Jeannie

YIKES!!!!!!!  That's a low BP.  Good thing their pulling him of the verapamil.  Hopefully that will help his BP come up.

Things may be moving at a snail's pace, but there moving.  I'm hoping that you guys are getting closer too!!!!!

Keep us posted on the other appointments Laurie.  We're all here pulling for you guys.

Add more hugs from me.........


Jeannie

We're doing okay Laurie.  Phil's still dancing the dance daily, but the O2 is really helping him.

Phil's on 480mg a day and his BP is fine.  I check it every once in a while.  Guess that's one of the benefits of me working in health care, I have a cuff and stethascope here at home 

Phil normally has a high BP and I think the combo of his lisinopril (for his BP), verapamil and being trex free for months now has finally brought him down to the normal BP range.  Although he is certainly not normal 

I don't blame Gary for wanting to do things outpatient if he can.  There's nothing fun about being stuck in the hospital.