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!   

Got my fingers crossed!

Laurie

good luck.  I will be thinking of you today.

Charlotte

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

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

Keep us posted, please.

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

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

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

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

Quote:


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

Best,

Roland.

Givem hell Gary. I hate doctors.
the bb

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

Smoochies 

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


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