Well, to start off with, the hubby is FINALLY going to be seen by a headache specialist instead of a regular neurologist!

He will be seeing a gentleman named Dr. Alan Finkel, who works with UNC-Chapel Hill on a visiting basis (this is what his neurologist told us). Has any one seen this particular doctor? If so, how was it? Was he amendable to trying different medications? Other treatment types?

I ask because my husband's current neurologist refuses to change his prescription at all (he's on verapamil and it's not really working anymore). She also has struck down any of our attempts to try another route for an abortive or preventative...

Tha is in advance for any and all help.  I just want him to see some one finally who is willing to work with him towards a solution.

Ok, so exactly what does that means?  (Having a rather blonde moment on the matter)  I'm new to this ball game and I don't understand exactly what my husband's new specialist being on the OUCH doctor list means.

Also, what should we bring to this appointment?  We don't have to worry about the medical record (it will be provided to the new doctor) and his medication history will also be provided.  Should we push for possibly having O2 available at our house? (here's hoping our insurance would cover it)?

I want the best for my husband.  He puts his life on the line to protect me, our daughter, and our country...he shouldn't have to suffer needlessly if there is a "small" chance he can get actual help for his CH's...

Quote:

That's very noble, loving and caring of you.

Thanks for the advice and the "atta girl's"...

I'm only trying to be as supportive to him as he is to me with my own medical issues.  If I could be half the supporter to him that he is to me, then I'm doing a fantastic job at it.  Having less than a year under our belts with an official diagnosis, I'm just super proud that I'm starting to know the "warning signs" of an impending dance number.

Now I just have to get after him about remembering to take his "Batch pills"...he gets so busy with work, he forgets them time to time.

His appointment is next Wednesday (June 6th).  We are just biding our time until it gets here.  We already know he has CH's (been over a year on official diagnosis), but are really hoping he can get off the Verapamil and get on another medication...gonna try for O2 but that is extremely iffy with his current occupation.

*crosses fingers*  Here's hoping!

It's spelled Goadsby, and most consider him the "all wise, all knowing, omnipotent, grand poo-pah of CH!"

He has spoken at several of the OUCH conventions over the years. You would be hard pressed to find a more compassionate, knowledgeable CH doctor. 

I couldn't be happier for the both of you. What a pefect example of taking on the battle of finding a way to beat the beast.
Joe

Totally sweet news about how your appointment went. It looks like everything on your wish list was ticked off and more. I'm really pleased for you both. I just wish everyone would get this kind of treatment from someone who so obviously knows CHs and how to deal with them well.

Is he going to the VA at all?  My CHer is a VET, and it has taken a long time....but his neurologist finally prescribed O2.  Now it is paid for by the VA (we do pay a %) Where there is a will, there is a way!  Don't give up...my hubby won't do anything in grey area either, he is out of military, but doesn't want to possibly loss some things either. So, I understand that! Even it the neurologist is NOT VA...if he has a VA PCP...the script can be transferred through.  Trust me...if deemed necessarily best for him...it can be done.

Mine is a chronic also.  Began as episodic, but after about 4 years, became chronic. Now it is everyday....yes everyday...twice...but it is better than the 6 - 8 he suffered with a couple years ago!  Everyday! Dibilitating for sure.  Life came to a standstill. (at least not a stop) Keep supporting!  And I am so glad to hear that you are working together at this.  Good luck and blessings to you both.
Beth

Hello,

My husband was medically discharged from the Navy after 12 years of service due to this condition. It really saddens me to know that there is no real research or known cause for this "condition". My husband is 32 years old, and suffering from extreme pain multiple times a day and just about every day. This current cycle seems to be lasting longer than any other. I will be honest...at first, I thought my husband was full of crap when first starting out with these cluster headaches. He was deployed to Iraq when he first started complaining about them. It wasn't until he returned, that I knew just how serious this condition was/is. I have never seen a grown man and combat vet drop to his knees and cry before as I now see my husband due very frequently throughout his day; awakened by sharp pain in the middle of the night,, his eyes rolling in the back of his head, his muscles shaking as he paces from room to room asking the man upstairs to make it stop. My kids are 6 and 11 and bless their sweet hears have to go on lock down when dad starts pacing. Vacations, forget about it. We can't even go one hour in the car without the demon invading our family vacation time. Pulling off a main/busy freeway to have my husband run along the side of the road, or hook up to his oxygen tank. This just can't be any way of life!!! My husband has been pulled off verapamil due to his blood pressure being way too low, he has been on cycles of pregnisone (Sorry if mispelt) and lithium. Nothing seems to work!!!! We recently caught a special on cluster headaches on the NATGEO where a gentlemen is now using LSD (mushrooms) that seems to help that now my husband wants to try. I am very apprehensive to this method being that it is illegal; however, if it helped who cares, right? Any advice would be greatly appreciated, Please! I am very happy to come across this website. Knowing there are other suffers out there is a little comforting... no pun intended to sufferers of this horrible  beast! My heart goes out to all of you and your family members!      Thanks!   

FYI, he is being treated at the VA hospital in San Diego and they have tried everything, and know are suggesting he try the ALL Natural route...are you kidding...all natural! Been there and tried that...Melatonin-tried, Cayenne Pepper...tried...Magnesium-tried....any other suggestions??? Tried no red dye in food, and all organic diet.

I am so happy that you found a good doctor. That is honestly the key to everything! Took me 5 doctors (from what I hear this is actually not SO bad) to find one who was a "guru" so to speak with CH. Goodluck with everything!! (as for abortive meds has he tried DHE? I had better luck with DHE than imitrex)

Sorry I haven't posted in a bit...been rather busy as of late.  The Pred taper they put Auban has stopped the headaches temporarily and it's been "let's live life NOW" for us. 

@Helpless:  Your husband's neurologist could have been suggesting one of two things by the "all natural" comment.  One is the cluster buster route, and that has helped several sufferers who have not seen a prescription medication relief at all.  The other route is listed over in the Medication section of this website in a thread titled "123 Days PF and I think I know Why".  It works on the premise that a majority of people are actually Vitamin D3 deficient (thank you technology), and bringing this vitamin's level back up to "normal" levels allows for about 70% of sufferers relief from the Beast.  Try what you and your husband want...you're not gonna find us saying "shame on you for trying that"...just not our way of doing things.  If you find something that works, then stick with it and enjoy PF or semi-PF days.

@Brooke:  We actually asked about DHE, seeing as how it would be another tool in our arsenal against this thing, and would allow Auban to solely use the Imitrex on deployments/trainings where his access to the DHE might be limited.  It was a no-go for us because the only available DHE was the IV one within the base pharmacy.  And we can't just get a script for it and go to a civilian one...that falls into the "gotta follow the rules" with him being Active Duty.  We aren't upset about it because we know that it is something to look forward to, a "tool in the storehouse" that we can utilize later when he isn't Active Duty...kinda like a light at the end of a long tunnel.


Thanks again to everyone who keeps posting on this thread.  It is a relief for me to talk to other supporters who are in the same boat as I am...a supporter to either a current or retired service member.  It's an odd line I have to walk....try this and he can stay in, try that and he loses his job.  My husband loves serving his country, and as an ex-Sailor myself, I can understand that.  So I guess I will do as my husband's unit says and "Drink water, drive on."