Hi everyone,
My name is Suzy and my husband is Bob.  He has been diagnosed with CH since 1990. This was after he had all his teeth pulled on the right side (had to sign waivers), also had nasal surgery.  Finally went to another EN&T doctor who's wife worked at Jefferson in Pa. Finally he was diagnosed.  He has suffered so much with these "monsters". He has been on verapamil, oxygen, tapers, gotten blocks, you name it he has tried it.  2 1/2 years ago he experimented with "illegal substances" that totally knocked him out of cycle .  This past March he started getting them again. Tomorrow he is going in for a 2 day imitrex infusion.  Don't know what to expect but always hopeful.  He's not very good at expressing how he feels and is only good working on the computer when watching porn. LOL So I'm posting on his behalf.  This last cycle has been so debilitating.  He is so depressed.   Keep us in your prayers for tomorrow and I'll let you all know how it goes.  Glad I found this place.

Your comments imply that you are still with Jefferson: if so, can't get much higher on the pole for quality care.

At this stage stay with their treatment plan so that everyone has a fair opportunity to see the results. Don't start playing with any of the "favorites" which folks will suggest to you until Jefferson has exhausted it's bag of tricks.

I can only assume Jeff. has considered the issue of "cluster-LIKE" headaches. At least ask. This is a complex, confounding group of issues which mimic Cluster but which are not Cluster Headaches. They will grasp the question.

Your husband's emotional contriction is, as you well know, a big barrier to working out all sorts of issues. PERHAPS--you could whisper in the primary doc's ear in hopes he (doc) could nudge your husband into talking with someone who could "help you control your Clusters" without using the big word, counselor/therapist, etc.

Reality is, how we emotionally deal with such chronic medical conditions can make a helpful benefit to the treatment packag. Depending on external, doc driven medical treatments, leaves the medicine cabinet a bit empty.

Jefferson is the heart of the most effective form of counseling/therapy to come around in decades.

Broadly, called "cognitive theapy(s)" it will appeal to your husband because the core idea is, "You can learn how to take control over your distress". Puts HIM in charge vs. being worked upon by an outside expert. (A legit, if wifely sneak attack.<bg>)

Please keep us informed.

Your comment about adding vit D system is not clear: adding with the doc's O.K. or without her awareness?

If without the doc's O.K.--unwise!

The doc has a treatment plan starting and if something else is added--without her awareness--it becomes impossible to tell which treatment is working.

By all means, read here, but changing horses in mid-stream can mess up the results.

another update~~he has been sleeping since we got home~~he really thought  we would be going to the casino tonight.  That's my man!  No headaches~~fingers and toes crossed!

Great news. Enjoy it whilst the pain free time lasts and hoping it lasts a long time.

Great news!!! I'm really pleased for you both. Now get out and enjoy life to the full.

However be prepared for the next cycle, which hopefully will be a long time in the future. It is a lot easier to have stuff in stock now rather than trying to scramble around to get things when it returns.

Don't forget about the D3 approach, hold it in reserve for the future in case the infusions stop working.