Well, we're off to Gary's 2nd appt with the neuro at Montefiore.  We've ruled out PH with the indomethican.  He's bumping up the verapamil dose now as per earlier instruction.  But neuro wanted to take the med route slow, looking for an explanation for the fever episodes.  Saw 2 infectious disease docs, got the high res MRI, and Gary's been a good pincushion - so far no explanation.  But we have little faith in the two ID docs he saw, neither would order a spinal (to check for meningitis) and we asked the neuro a couple of weeks ago to get Gary hooked up with one there (wait to see anyone good out this way is now into March).

So we'll see what happens today.  We're armed with more info from wonderful people from this site (THANK YOU!), and I'm hoping doc will be willing to start Gary on lithium, which he still hasn't ever been prescribed yet!   :o

Got my fingers crossed!

Laurie

Laurie, has Gary been to an endocrinologist for thyroid testing by any chance? I was just thinking out loud on this since you mentioned it in earlier threads… I have an overactive thyroid myself and the doc wanted to kill it a bit with radiation and of course I declined.

I only mention this as a possible reason for the fevers. PF’s to Gary, Roland. ;)

good luck.  I will be thinking of you today.

Charlotte

I'll be thinking of you both as well, Laurie.  

The fact that Lithium is a route that Gary has not tried makes me hopeful!  It has help so many... Maybe it will be Gary's silver bullet too!

Hugs to you,

Jeannie

Lithium has been magic for me for many many years now. Hoping it proves the ticket for him. (and the good news is the doseage we use doesn't zombie you! No one ever knows when I'm on it!)

Joe

Lightem up and good luck.
all the best
the bb

Hoping you all find some relief, Laurie.....good luck!

Keep us posted, please.

THANK YOU everyone!

WHAT A NIGHTMARE!  We never made it in!  It's been stormy here basically for days with a break yesterday afternoon - but last night it started pouring.  Thankfully it's warm here right at the moment, so not snow....  but long story short, we made it through a flooded road, around a fallen tree, got to the highway running about 1/2 hour late - only to find out there were accidents (of course) all along the way so traffic was worse than even we expected, there was an HOUR wait at the George Washington Bridge, and an accident at the Lincoln Tunnel with ALL lanes at the helix closed (!!!!) - so no alternate way into the city to get up to the Bronx.  (Taking the Tappanzee wouldn't have saved any time it's so far North).

We gave ourselves 2 1/2 hours (to make what should be a 1 1/2 hour drive not during rush hour) - and we were going to be AT LEAST an hour late - likely 2!!!  So we called, and they preferred that we just reschedule.  :(  So we're on for next Thursday.  Thank GOD they found a time to squeeze him in.  I was sure they were going to give him a date in January.

.........as to the thyroid and pituitary tests..... yes, he's had them.  Several, actually, at this point.  They're supposedly normal, but someone posted in the meds forum thread about "new" guidelines, so I printed that out, and was going to ask Doc to review Gary's last blood work when we got there.  Guess it's just going to have to wait until a week from tomorrow.   ....better late than never, I guess.

I do believe everything happens for a reason, though.  So this is disappointing - but turns out Doc had NOT gotten anything set up with an ID doc there.  He's going to see if he can put something together for next Thurs, so maybe we can get it all done at the same time now.  (Got my fingers crossed).

Laurie

Hi Laurie.  I'm sorry you guys had such a bummer of a day  :'(  I'm with you, everything happens for a reason.  I hope things go well next week.  Phil and I will be thinking of you both.

Please keep us posted.

Love,

Jen

Thanks.  :)

We got an appt set up at the GP for Friday AM, so at least we can go back and take a re-look at the blood work.  :)

Laurie

We made it to today's appt.  It has been a horrible day and a horrible week for Gary.  I'm in a horrible mood.

They've got that whole teaching thing going on there, so he had to meet with a Fellow before seeing the Doc.  We were there 2 hours because he got an attack as soon as Doc came in.  He tried a lidocaine block - shoved a bunch of long q-tips up his nose.  Didn't do anything but freeze part of the back of his mouth/teeth - unless it just took 50 minutes to abort.  Sounds like the length of an attack to me.

I do have to give one thing to Doc - he almost looked like he was going to cry while watching Gary.  It's got to be daunting to be faced with a patient that hasn't seen any pain free time since sometime in early 2007.

I'm pissed at myself.  I couldn't shut up again.  Too many questions.

Bottom line - they want to go with verapamil and depakote for now.  Believe Gary was never on high enough doses to be effective for him.  But the depakote made him REALLY ill.  I'm too upset to even remember correctly what the doc said exactly.  But something about side effects of depakote vs. lithium.  I don't know what the side effects of lithium are, but I do know that fatal pancreatitis is a potential side effect of depakote.  

OH - and when I asked about WHEN he should take the additional verap, doc said it's the ER kind, so all at once at the same time every day.  I thought standard of treatment was with short-acting verap.  ??

Gary at least told doc he doesn't HAVE months to slowly ramp up on all this crap.  Doc said that if he sees a cardiologist for EKGs basically every week, they'll walk him up by 120mg a week as long as things are going OK.  They'll take him up to something like 1200mg of verap before ruling it out.  

So now we have to find a cardiologist.  And he'll have to continue to blood work regularly.  He's been SO good about it and he hates it so much.

Doc wants to talk to him the morning of the 31st.  I told Gary that if the Depakote is too difficult on his system, he just has to tell Doc that!

BUT he did refer us to the #1 Infectious Disease doc at Montefiore.  I have to call tomorrow to make the appt.  If the date is too far out, we're to immediately let Doc know, and he'll do what he can to move it up.  And he WILL provide the background here.  So that's helpful.  

...and Gary's got to go get an MRA now.

Fun city.

Laurie

I'm sorry you had such a rough day  :'(

Very rarely will you hear me say this, but maybe it was a blessing that he got an attack while you were there.  Then the doc could see first hand what he goes through.  The lidocaine didn't work for Phil either.

Don't you dare be pissed at yourself for asking questions.  I do the same thing.  If we don't ask, how are you going to know.

If the depakote made him sick the last time he took it stick to your guns about getting him some lithium instead.  As for the verapamil I would ask for the regular release.  Phil just had his switched so now he takes 480mg a day.  So he takes it 4 times a day.

Hang in there.  You know we're always here when you need to vent.

Love,

Jen

Sure wish you all could catch a break..... :( :'(

I'd tell you to stay after it but there is no doublt in my mind that you will.

Much Love,
Jackie

Thanks.   [smiley=hug.gif]

No, I'm pissed at myself because I get really bull headed sometimes and I took over the appointment, which wasn't fair to Gary.  It's one thing to ask questions, it's another to act like it's my appointment. I can really be an ass.  [smiley=bag.gif]

I DID ask for regular release verap, and he said studies show no definitive whatever, so they use ER.  End of discussion.  

Gary DID ask for lithium.  We both told him - Gary once, me like four times, that the Depakote made him really sick, he didn't tolerate it (and what's the point if you throw most if it up?) - and somehow we walked out of there with a scrip for depakote, not lithium.

Gary was pepped up by how AMAZING everyone is and being so welcoming, but he won't be on tonight because he is in a REALLY dark place of pain and depression.

I think we should go see his GP on Monday and get him to write the lithium, and just fill doc in when we see him in Jan.  I also asked about Zyprexa as an abort, and he he's got problems with it, so wouldn't prescribe it either.  That's why I/we don't know what to do.  GP would probably write that too.

UGH.

Laurie

Laurie

You know what I have noticed?   You guys have sure come a long way since the fall even if it may not seem like it to you guys.  I know Gary is still in lots of pain and things continue to be stressful... but I see forward movement.  

Look at the accomplishments :

1.  Gary detoxed
2.  Gary is reaching out... WOW
3.  You are really getting closer to finding out about the fever
4.  Gary has a new trial of drugs -
5.  You both have continued to stick together through this
6.  And geez.. you both still maintain employment thru this crap


Amazing stuff! you both should be very proud..

Kelly

Kelly, thanks.  :)  

It's just frustrating because he's back on a drug regimen he's been on once before and the depakote makes him sick as a dog - when he keeps it down.  So that's frustrating.  Can't understand why neuro didn't want to go with lithium - which would help with the depression, has a good success rate with chronics, AND Gary hasn't tried yet!  GGGGGGRRRRRRRR!

I just thank goodness he had such a good pain management doc (part of the reason I got pissed when people who don't know the situation called him a quack - he's an F.I.P.P. (Fellow in Interventional Pain Practice) and there are less than 200 in the world), because even though he's not on the pain meds anymore, Doc is still acting like "point man" on Gary's CH case (don't like our GP so much but he's close and competent).  PM Doc has done a LOT of CH research, was a proponent in the detox, is in touch with Goadsby, found the high res MRI place for us, got Gary's MRA moved up by weeks, is getting up to speed on ONS just in case we need to go that route (he performs surgery 2x a week with similar devices, though never before for CH) - even talked to some Docs in Italy and has made arrangements to watch a surgery in CT by one of them in January - blah blah blah - point is, he's going to call to chat with the neuro about the drug decisions (neuro has non-patient office hours on Mondays).  

In fact, I've got a call scheduled with him during office hours tomorrow to discuss all of this (zyprexa, lithium vs. depakote, ER vs Regular Release verapamil).  So we'll see what he recommends after talking to Gary's neuro and doing his own research.

He's also helping us with the cardio, so hopefully we can get that under way ASAP.

It's also frustrating because the fevers have been really bad recently, I'm sure they make the CH worse, and now he's got nothing, and he can't stand it, and I can't stand it.   :'(  And I guess we are closer to an answer (regarding the fevers) having ruled a lot of stuff out - but it doesn't seem we're any closer to figuring out what's actually causing them.

And proud wife moment - if Gary weren't completely brilliant, employment would be a problem.  Thank GOD he predicted this basically since October of last year, thank GOD we've been short pretty much everything equity.  But too many times he can't take calls from the desk, too many times we've had to move the morning meeting around unexpectedly because Gary was having an attack, the number of conference calls we've had to reschedule is simply countless.  ...and how many jobs have been lost on Wall Street?   ;D  

We're commission based, not salaried - but we DO have insurance, and yes, we remain employed, and that is a GREAT thing.  

As to being together through all of this?  I can't and don't want to imagine my life without Gary.  I'm sure it's the same for him.   [smiley=heart.gif]

Laurie

wrote on Dec 10^th, 2008 at 9:46am:

Laurie, has Gary been to an endocrinologist for thyroid testing by any chance? I was just thinking out loud on this since you mentioned it in earlier threads…

Laurie, the depakote was one of the drugs I could tolerate but also had no + effect...

Best,

Roland. :-*

Not seen an endocrinologist, but had extensive blood work.  Pituitary and Thyroid both check out OK.  Even saw the thread where TSH level of "normal" has been redefined.  But his is 2.9, so still in the normal range, even with redefinition.

We'll see what happens with infectious disease doc, I guess, and proceed from there.

Thanks.   :)

Laurie

Givem hell Gary. I hate doctors.
the bb

No zyprexa (yet).  No lithium (yet).
Try depakote for 1 week.  See if still intolerant.  (Take sucralfate 1 hour before depakote).
Increase verapamil to 480mg next week.
Talk to Montefiore neuro am Jan 31.

See cardiologist Jan 8.
See Montefiore infectious disease doc filling in for top doc while he's on vaction on Jan 14.
See Monteifiore neuro again Jan 14.
Follow up with "top ID" doc at Montefiore after he's back from vacation on Jan 23.

Just hell for Gary right now.

Little by little.

Laurie

Hang in there you guys.  You know that we're all here pulling for you.

Smoochies  :-*

I found something in the archives of this board recommending the regular release Verapamil. I printed it out, faxed it to our doctor and she was willing to give it a try. It DID knock down the clusters, and he was even able to go with a lower dosage. Let me see if I can find it.

Jan

Verapamil Info

Headache. 2004 Nov;44(10):1013-8.  

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

  Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).
=====================

SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
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Thank you!!!!!!!!!!!   [smiley=hug.gif]

Start the weekly cardiologist tomorrow, so will start ramping pretty quick on the verapamil.  We're at the neuro next Wed - this time I'll be armed with the info to get him switched to the regular release.   [smiley=thumb.gif]

Also... pound the doc into switching the depakote (which seems to be making things worse, and he's up to 1000mg now) to lithium.  He's a sweetheart - but he does NOT have to suffer this or watch this every day and Gary's pushing 2 years with NO pain free time AT ALL.

SOMEHOW the MRA stuff got screwed up, and we're still trying to get the insurance approval.  They said we'll have a new decision in two days.  Like the title of this thread, I'm hoping......

And next week cannot get here soon enough!  The fevers are daily now, so there SO is something going on here.  Someone has GOT to get this figured out.  It is KILLING him.  Fuck - he can take the pain.  But these fevers are just grinding him down.  The man can barely see straight anymore.   :'(

Laurie

Garys_Girl wrote on Jan 7^th, 2009 at 10:00pm:

The fevers are daily now, so there SO is something going on here.  Someone has GOT to get this figured out.  It is KILLING him.  Fuck - he can take the pain.  But these fevers are just grinding him down.  The man can barely see straight anymore.   :'( Laurie

You're right Laurie.  Someone has to get this figured out.  Keeping hanging tough, both of you.  Keep after the docs, which I know you will do  ;)  If the depakote is making him sick demand the lithium, which I also know you will do.  Also know that we're all here pulling for you guys.

Here's a some hugs for you both [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

Jen, I need those hugs - thank you.   :'(

We're not at the cardiologist because he was having a CH attack AND a fever event.  His fever FINALLY broke and is down to "just" 102.7.  THIS IS INSANE.

I am getting more and more convinced that he's med-resistant because his clusters are caused by something else and are a symptom - there's so much atypical stuff going on with him.  All missing the cardio means is that he can't ramp so quick on the verap.

THIS SUCKS.

Laurie

I'm sorry, Laurie.  I haven't been around much to offer my support.  I really hope things start looking up for Gary soon.  

More (((((((((((((((hugs))))))))))))))))

Jeannie

[smiley=hug.gif] right back at ya, sweetie.  I hope those hits let up and let go!!!!!!!!!!!!!!!!!!!!!!!!

Laurie

Sure hope they can get those fevers figured out.  That would be my main concern at the moment.

Love & Hugs to you....
Jackie

I totally agree.  Sadly, the infectious disease docs out here were a total waste of time.  And while all this time has gone by, Gary's brain cells have been literally frying.  

I am SO hoping that they get somewhere at Montefiore.  The dept there has a great rep.  I know this sounds weird - but I wish we could find a doc as great as our vet.  

Laurie

Garys_Girl wrote on Jan 8^th, 2009 at 3:44pm:

I know this sounds weird - but I wish we could find a doc as great as our vet.

Sadly that doesn't sound weird at all.

Oliver

Maybe I should just take Gary to the vet!   ;D

Laurie

  Hang in there Laurie,  I wish I could help [smiley=hug.gif]  You two have got to get those fevers under control.  Get Gary to the Vet asap ;D
 Phil 8-)

Well, Gary's had a "fever" of 96 degrees for three days now - but he's sweating like crazy and I'm having trouble keeping him hydrated.  It's nuts.  He also had THREE of those spikey fever events in 24 hours Sat am to Sun am.

Wednesday can't get here fast enough.

Laurie

Only 2 more days Laurie.  Hang in there, you know we're all here cheering you guys on.  

Please keep us updated on what the docs say.  I'm very curious to know what's causing those fevers.  

[smiley=hug.gif]

Still thinking of you guys [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

Love,

Jeannie

Tomorrow is the day.....finally!

Keep us posted, please.

Jackie

We were supposed to head into the city yesterday for work - didn't make it.

Didn't make the appointments today.  Fever and attack.  I couldn't get him into the car by the time we had to leave.  Impossible for the man to shower when shaking and shivering uncontrollably with the fever spike.  Might have made a difference if we only had to go 1/2 an hour - but the time we should have left we needed 3 hours.  But it really is crazy - with the shaking and shivering he doesn't want to move - but with the pain he doesn't want to stay still.  Do still have the appt with the head of the infectious disease dept on the 23rd.  Rescheduled neuro for 27th.

Did get approval for the MRA, finally.  It's such a stab in the dark to figure out when to schedule it.

Stopped the depakote in the meantime.  He's back to 5 - 7 hits a day, so it was making things worse.

Today was a real bitch though.  The man couldn't stop crying he was so disappointed in himself - but a 3 hour car ride was just so obviously not going to happen.  Lack of sleep isn't helping.

So anyway, there ya have it.

Laurie

I'm so sorry.  Was hoping they would get to the bottom of this with todays appointment.   Does he nee to be in the hospital ya think?

Certainly not in one out here - he's been there.  His GP and his neuro both seem to think getting to this infectious disease doc is the thing to do.  He's already tried two out here, but they just didn't seem to get it.

Haven't seen this Gary in a long time:

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This is Gary these days (though in this pic he's not sweating or leaking tears):

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Laurie

I too am so sorry about today's events.   I so wish that there was something I could do or say to help Gary and you.  That second picture breaks my heart. :'(

Thinking of you always,

Jeannie

Breaks my heart too...... :'(

Love & Hugs to you both,
Jackie

It is heartbreaking.  He looks at least a little bit better now that he's decided to let his hair grow back in.  He shaved it off in a fit during a fever.  Doc said (after the fact) that it does help cool him down.  But it's tough with it so cold out!!!!!!!!!!!!

Anyway....  I wish I'd thought of this earlier.  But... even though we SO cannot afford it, I'm hiring a limo for next Friday.  That way I'll have a man to help get Gary moved around if he's not too mobile, neither of us will have to drive, and he'll have room to lie down or room to thrash around.  I can grab a pile of blankets, and I'm going to ask them to stock it with bottles of water.  Out this way "limo" usually refers to a sedan, but I'm going to get a stretch limo so he's got the space.

Laurie

Laurie and Gary I just cannot find the right words to say right now.  I'm just so sad for you guys.  My heart aches for the both of you :'( :'( :'( :'( :'(

You're both in my prayers.

Laurie and Gary, it seemed you had so many people making posts, dropping in, I didn't post.......I'm sorry...........
After seeing Gary's pic with the cat, I have to drop in with my own 2 cents.......
That cat looks just like my warm, cuddly, soft-tongued Pepper Kitty, I lost last year.........it made me smile to see Gary with your tuxedo cat.......I soo miss my Pepperkitty......
Laurie, you're an awesome supporter. Gary's going to work this out, with help, of course, and life will return to some normalcy.
You know you have friends to lean on-please count me among them.
Big hugs and lots of vibes going out to both of you!
Cathi :-*

(((((((((((((((((hugs))))))))))))))))))) to all.  And there just aren't enough thanks for all to express what I feel when I return to this thread.   [smiley=heart.gif]

He's been down with strep throat on top of everything else.  It's been so rough.  Tomorrow's the day!

Laurie

I'll be thinking of you both...and saying a prayer.

Jeannie

God bless you both.  Praying for your strength and healing.

Positive thoughts, Sweetie.....hoping for a good, productive appointment.

Love to you both,
Jackie

I am crossing my fingers for him and for you.  

Now is the time for you to be as strong as you can.   ;)

Good luck to the both of you.

Best of luck to you two tomorrow.

got my stuff crossed

            JPC

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

OMG.....If you all didn't have bad luck you'd have no luck at all. :'(

I'm glad you weren't injured and hope you're not stiff and sore tomorrow.

Love to you both,
Jackie

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

I spent some time searching for a different infectious disease doc - one actually located in northern NJ.  Found the replacement for a guy that practiced in affiliation with Morristown Hospital.  Spoke at LENGTH to the scheduling lady.  She took pity, and asked me to fax up what I had - the blood work records, the MRI info, his fever diary.  I don't think she was expecting 16 pages!   ;D  But I think she'll plead Gary's case to the doc when he's in Monday morning.  She said she'd call Mon afternoon.  So here's still hoping.

But Gary's got strep, is completely miserable, is VERY depresesd....

and all I know is that

1)  Everything happens for a reason, and
2)  God never gives you more than you can handle.

So I don't know why things are working out this way, but I have to believe there's a reason for it.  And there IS good luck here - it wasn't our car!  And we're basically OK.  So that's a good thing.

But yes...  for a million other reasons you would have no reason to know, it sure seems like we've been living under a black cloud for about four years now.  Well - pushing five.

But we've got each other, and we're still sort of earning something.  Being on Wall Street, that's meaningful.  At least we're with a firm and though we don't receive salary, we're ABLE to earn something - and we have health insurance, and I have my health.

(((((((((((((((Hugs)))))))))))))))

Laurie

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

Love ya,
Jackie

Good grief!!!!  If it's not one thing it's another.  I'm glad that you guys didn't get seriously hurt. How are you both feeling today?

I hope you get into to see this new doc.  If anyone needs to get into him ASAP it's Gary.

Keep that positive attitude going!!!!

[smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

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.

Wow....just wow.

Glad you are able to still be thankful for what you have.  You obviously care a great deal for each other.  

What a rotten streak of misfortune you have had.  Wishing you the very, very best.

dhjacks, we are VERY lucky to have each other!   [smiley=heart.gif]

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.   ;D

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

Glad to hear that the fevers have been down.  Keep us posted on all of the other stuff going on.  

[smiley=hug.gif]

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.

Hi Coleman!

Yes, apparently the thyroid CAN affect CH!  Let me go find the thread so I can post a link for you.

Laurie

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

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

Laurie

BTW - as to Gary...

Last weekend, Fri eve to Mon am, 4 fevers with temps in excess of 105.

Cardio today says he knows the top infectious disease doc in northern NJ, and will see if he can get the guy to see Gary ASAP.  *fingers crossed*   AND... we brought the fever diary with this time... and he was VERY interested.  Had LOTS of ideas, and has Gary set up for a bunch of tests next week.  Little by little we seem to be getting the right team of docs together!  Even though Gary's pain management doc isn't prescribing stuff to him anymore, we became friends with him, and right now he's Gary's prime advocate.  And now the cardio seems to be on board.  :)

OH!  And the PM doc (who also has 3 surgery centers) is going down to Philly next week to see another ONS implant!  (He went to CT to watch some Italian docs do one - I think it was last month).  So if Gary ends up having to go that route, at least he'll probably be able to do it up here with his doc.

So meanwhile, we're playing phone tag with neuro.  Gary's PM doc called him to say instead of waiting for the Montefiore ID doc, why not just get Gary in there inpatient and run the gazillion tests.  So he wants to do that.  He's just impossible to get a hold of.

Another meanwhile...  went through the sufferer recommended docs on the OUCH site again.  Most up here are GPs, but actually found a neuro that's only about an hour from here!  Got an appt for the 11th.  If he thinks he can help and he's willing to try meds Gary's not been on before, we'll probably switch.

Wow - if all this comes together it would be nice.  Docs in NJ not NY!  We can but hope!

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!!!!

Yes, I'm hoping for you too.  Hoping it all comes together for you all soon.  This has been going on way to long.

Keep us posted, Lauire.....

Love to you both,
Jackie

Hi Laurie!

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

hugs,

Jeannie

[smiley=hug.gif]  Thank you.

They're pulling Gary off of the verapamil - he can't tolerate it.  He went for his echocardiogram today and was supposed to have a stress test, but his blood pressure has been very low the past few days.  We were hoping it was just the cuff - but no.  His BP at the cardio today was 80/50 and his pulse was 54.  He looked terrible and felt terrible.

The cardio has not spoken to the NJ-based infectious disease doc, and he leaves for vacation tomorrow.   ::)  

So that leaves us with one ID doc on Monday, and the rescheduled Montefiore ID doc a week from Monday.

The potential new neurologist's office called yesterday to reschedule for next week, so that's still pending.

Everything continues to move at a snail's pace.  But hopefully we're getting closer.

Laurie

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.

[smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

Fingers crossed for you all.

Love ya,
Jackie

Add more hugs from me.........
[smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]

Jeannie

Hi Jen!  Hope you and Phil are hangin' in there.  

Yeah, it pretty much bites.  It's weird - he's "only" up to 520mg of verapamil.  In 2007 he was on 480 and it didn't seem to be an issue (though we weren't taking his BP, and he always felt sick and had no energy back then, so who knows, really).  

The neuro wants to stick him in the hospital on the 22nd.  He's going to hold off on doing it, because his appt with that specific ID doc is the 23rd!  If they can do the testing they need to outpatient, he'd much rather go that route.  But he wants the ID doc's opinion on what is best to do, because the only inpatient stuff the Montefiore neuro says they usually do for CH is the DHE drip, which we already know he CANNOT tolerate!  

Laurie

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  :D

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

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

We're still looking at April.  It just pisses me off.  All the phone calls and emails not only from us, but also from others here and they still won't see him any earlier.  

Hopefully when Gary's BP returns to normal he'll feel a little bit better.

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

Well, found an article where high central fever presented in patient with "intense cephalagia" (clusters are included in the list of stuff that is covered by cephalagia) - what caused his was NEXIUM.  It crosses the blood brain barrier, and though they don't understand the pathology (physiology?  Whatever word is correct) - stopping the nexium stopped the fevers.

Protonix is the only drug he hasn't stopped taking at some point.

He's going to stop it for a week or so and we'll see what happens.

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.

Well, it wasn't the Protonix.  He's been off of it for five days now and he's on his third major fever event.  The nexium-related fever problem was resolved within 20 hours of coming off the nexium.

The Montefiore infectious disease doc appt is tomorrow afternoon.  Hope we make it.

Laurie

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

Love to you both  :-*

Laurieeeeeeeee!!!!!!  Did you guys make it to the doctor on Monday?  What did they say?

It's been a few days and I haven't seen you.  I'm getting worried about the two of you.

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

Me too!

Jeannie

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

Laurie,

I wish with all my heart that something would fall into place for Gary and you.  I think of you often and am praying for you.

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

Jeannie

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  [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif] [smiley=hug.gif]  

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

Ditto what Jeannie and Jen said!!

Bless your hearts.

Keep us posted when you can.

Love ya,
Jackie

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

How I hope and pray that this doctor is the one that will finally be able to get those fevers figured out.  It's enough to deal with CH, but to have all these fevers too.  I just can't imagine the hell that Gary and you are going through.

Hang tough you two, you know that Clusterville has your back.  Call on us anytime  :-*

Keep us posted!!!!!!

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

Keep up posted, please.

Love ya,
Jackie

I pray that this doctor is the answer to your ( and our) prayers for Gary.  

Tell Gary to just hold on... He made it this far and finally there may be a light at the end of the tunnel.

We're here for you. [smiley=hug.gif]

Jeannie

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

I've been wondering about you all.

OMG they still can't figure the fevers out!  Are they still as bad as before?

At least you've got something to try.  Fingers crossed for you.

Keep us posted, please.

Love to you both,
Jackie

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

Laurie,

Prayers coming your way. Tell Gary he has been in my thoughts. No fun for either of you..

Don

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

Laurie