looking for input

[sambo]

Hey

I've been suffering chronically for over 4 years from clusters. 

Just recently I've been diagnosed as having a serious mood disorder. 

First order of business was to get off the verapamil and inderal i had been on for the last 2 years.

I had beent taking 360mg.day of verap and 120mg.day of inderal.. both didn't end up being effective and I stayed on them because i was scared to get off them.

I had heard verapamil withdrawal is a doozy because your hits go crazy.. whats happened with me though is that I have gone from getting attacks predominantly in the day (maybe 1-2 attacks during the night a month) over the last 4 years.  Now all of a sudden I'm getting woken up at 2am and then if I try to go back to sleep I'm hit again and again and again. Sometimes I'm able to fall asleep and get awoken within an hour by the pain but mostly i haven't even been able to lie down because as soon as I do my neck at the base of skull starts to hurt and the cluster pain quickly ensues. Oxygen is still helping - but not nearly as effective.

Anyone else experienced this?  Whats the likelihood that the meds im taking for the mood disorder are making it worse ?- im taking trileptal 900mg.day

I weaned myself off the verapamil over the last month and have been off it for over 2 weeks. 

I've just recently started to wean off the inderal. 

thanks,

sam

[CH-HELL]

Hi Sam,

I think many people have looked at your post and not responded because they where not familiar with those meds.

Let me start by asking if your doctor is a good Neuro?  The meds you listed are not the best for CH with the exception of Verapamil and 360mg a day could be raised if you got off the Inderal(propranolol) witch is more of a migraine drug.   The Trileptal could be changed to Lithium witch is a good mood disorder and CH med.  I am NOT a doctor but I would suggest changing the Triletal to Lithium and increase the Verap while getting rid of the Inderal.  Or try Busting.

Good luck Sam and hang in there.

Phil

[Dallas Denny]

G'mornin Sambo,

Sorry ya had the need to find us but Welcome Home!!

Inderal was the first med they tried on me over 25 years ago.  Can't say as I felt any effect from it good or bad.  Well, other than when I was in the ER with chest pain and was given a nitro pill under the tounge.  Found out in a hurry that blood thinners and nitro DO NOT mix well!!!

I have used Verapamil in the past but never felt it helped me either, and along with CH-HELL, I don't know anything about the Trileptal I'm afraid so really can't offer advice there.

The thing that struck me about your post is your having being diagnosed with a mood disorder after being chronic CH for 4 years.  I would venture to say that a majority of episodics with a cycle duration 3 to 4 months ( let alone a multi year chronic), are suffering from depression and/or moodiness by the peak of their cycles.  I am not a Doctor nor am I trying to second guess your personal diagnosis, however, if I were to be given that diagnosis in the middle of an episodic cycle, I would find it necessary to seek a second opinion before I added another medication to my regimen!  JMHO..

That being said, I really hope you can find a combo that will work for you and give you some PF time soon.

Best of Luck

Dallas Denny