Had the appointment with the new dr (headache specialist for real this time).  He spend almost 2 hours with us.  He did a very thorough history and work up.  He actually knew what he was talking about and about cluster headaches!  He is planning on being very aggressive with this.  Will be picking up the new meds soon.  Verapamil and inomenthacin.  Not sure of dosages yet but I do know that he prescribed the non extended release verapamil.  If not markedly better in 2 days call and he will up the dosage.  If that doesn't work he already  mentioned his next line of attack on the beast.  Gave him information on D3.  He was not really into it  but said if it is helping there is no harm in it.  Was concerned about the amount of D3 but did not fight me on it.  Hoping this will work!  For the first time since he was diagnosed I feel hopeful that we have the right dr who will give everything in his arsenal to battle this!  I left there in tears today.  But for the first time, they were tears of joy as I feel we have found someone who knows about it and truly cares.  And my husband has found someone he can have the confidence in to try the advice that he gave.  That is a first!  I thank God for this place as well or I would not be as well educated on cluster  headaches.  We might even still think that he has sinus infections.  Will let you know in a few days if the protocol is working!  I had to hug the woman who got my husband the appointment after such a disappointing visit with the last dr.

Lori

Lori,

We love to read posts like this. Onwards and upwards and here's hoping that 2016 and beyond brings you both nothing but good things.

Keep us posted on progress.

Peter.

So nice to read of you success and new comfort!

Now, cultivate patience! It will take some time to find the best combtination of meds and doses that work well for husband.

We've all been thru this thing and know that refief is available for the vast majority of us.

Hi Lori
I had a neurologist very similar to that. He insisted I did not have cluster headaches because I'm a woman.

Isn't it a relief to find someone with some brains.

His dosages are 120 mg verapamil 2x per day and 75 mg indomethacin 2x per day.  He only went into the oxygen last night once and for a very short time.  I did not hear him get out of bed at all last night.  I am hoping this is the case because sometimes I miss him getting out up to go to the oxygen.  Most of the time I do hear him.  I know he was not up at 3 am which is usually one of his worst hits because I was having a hot flash and up staring at the clock!  T

A step in the right direction!  Hoping the side effect are tolerable because let's face it: Every medication has side effects.  His reaction to topamax was not worth the side effects.

Lori

whilst it seems like you ve found a competent one or maybe you have , im slightly concerned that he didnt insist on a ECG before prescribing verapamil
also the fact that he says if not better call and ill up the dosage is a big NO NO,no way should any increase happen without another ECG.

SORRY

Lori, 240mg/day of Verapamil is a low dosage when it comes to fighting off the beast so you shouldn't have any problems if he doesn't have any Heart issues. With the Indomethacin be careful! It can play havoc with the tummy.

Hoppy

I was put on indomethacin when I first started seeing my new neuro in another city (it was a 2nd opinion now he's doctor).  The reason I was put on it was as a diagnostic tool for hemocrania continua.  I did not respond to it (twice) and was put on a prescription antacid while taking it to avoid stomach problems.  Indomethacin did make my feet/legs swell pretty badly though.

I was on verapamil at higher doses and my neuro did not order ekg until I asked for one.  I am on 600mg daily.

I agree with Stan. Indo is the med of choice for paraxismal hemicrania, a condition very similar to, and easily mistaken for CH.   For PH it has 100% success rate, but for CH it's 0%. 

I too had to suffer through months of taking this awful drug to no avail
- also twice.

Get your husband to persevere with the D3. It takes a little while to build up to the necessary level so you need to be patient. But while you wait, if the indo doesn't help, ask for Sumatriptan auto injections. It's THE best abortive for CH.

There is no definative way of diagnosing rare headache disorders. But as they all respond to different drugs diagnosis is made by trial and error.

He is no longer taking the endomethacin As it did not help at all.

I am happy to report that hubby is doing really well on verapamil.  Don't want to jinx him but he is not having any attack now which is huge!  Oxygen never lasted so long!  We are both thrilled to death.  He is to stay on the verapamil until Feb 1 when he goes back.  Last cycle lasted 3.5-4 months so that will be a little early since his cycle started November 15th.  Dr told us that verapamil can break the cycle.  I have never heard that so I am doubtful of that.

Lori

Great news.

When he comes off it, he needs to drop down in stages, just like when he started on it.

I've not heard of verapamil breaking a cycle either.

Hoppy wrote on Dec 22^nd, 2015 at 11:02pm:

Lori, 240mg/day of Verapamil is a low dosage when it comes to fighting off the beast so you shouldn't have any problems if he doesn't have any Heart issues. With the Indomethacin be careful! It can play havoc with the tummy. Hoppy

all very true but how would they no they have a problem without an ECG.
sorry but as far as i know you need an ECG before starting and before any increase in dosage.

Is this better

---