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.

He's on the OUCH list of recommended doctors:

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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...

Trying to answer all your questions...

The OUCH list can be found via START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. It lists doctors who have been recommended by people with CH. So they should be fairly clued up about CH.

For the appointment, to get the most from it you need to do a bit of preparation. Write down a list of everything you want to ask about. It is so easy if you don't to come out of the appointment and then remember things.

Do ask about oxygen. As you'll see in countless posts here it's simply amazing at killing off CHs in minutes without side effects. Otherwise note down whatever you'd like to tell the doctor be it changes in symptoms, observations, patterns in when CHs appear... And do take notes during the appointment, it's hard to remember everything that is said during an appointment.

As to wanting the best, that is what we want for everyone who comes here.

Quote:

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...

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

He's damned lucky to have  a supporter like you in his corner.  [smiley=hug.gif]

Joe

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. :)

How soon is his appointment? You'll have to report back aftwerwards and let us know how it went!

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!

UPDATE::

So, we have just wrapped up our appt with Dr Finkel, and to say we were amazed is an understatement!

He ordered a battery of tests for my husband (bloodwork, MRI, and sleep study) to rule out anything that could have caused the clusters.  He said that there are Primary (you were gonna get them anyways) CH's and Secondary (something caused them to start).  He wants to rule out all secondary causes so he's not missing anything.

As for medications, we are ecstatic that he was open-minded to trying something other than Verapimil...Auban's dosage of Verapimil was in half, started on lithium, and given a Pred taper to allow the lithium to build up in his system.

As for O2: Our insurance does not cover it, just like Medicare doesn't cover it.  BUT Dr Finkel asked us to give him a month to work with our insurance to get them to cover it. What gave us hope is that he was adamant about finding a way for us to get it...said it works better than Trex injections (something we already knew!)

And for the icing on the cake, when we told him that we were moving to CA in the fall, he said that he would make sure we were gonna be seen by another OUCH doc, a Dr Peter Godsby, over in San Francisco.  If not him personally, than at least the clinic he works in.  Dr Finkel kept referring to Dr Godsby as the "King of CH's". 

Well, that's about all I have to report...oh, forgot, we were told that Auban has chronic CH's, so we know which side of the CH fence we sit on.  Looks like I get to do a ton of new research on the new specialist we will see in a couple of months, and get to hopefully spend a few days with a VERY HAPPY husband!

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

Just so you know, the generally accepted definition of "chronic" is going a full year without at least one break of 30 days or more of pain-free time. Goadsby told us in Atlanta that they were looking to possibly change that definition to somehow include the word "unremitting," but I haven't heard any more about it.

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.

I think we were just dang lucky to have a CH specialist in close proximity to us.  I think it also has something to do with the fact that there are THOUSANDS of soldiers returning from Iraq/Afghanistan with Traumatic Brain Injuries and the largest base in the area with patients suffering from these is also the base my husband is currently attached to.

As for the definition of chronic Brew, it really does fit my husband's headaches.  The longest he has gone without headaches has been when he was treated with Prednisone to stop a severe reaction to the smallpox shot (they need the shot prior to deployment overseas) and when he first started Batch's regime.  He had no pain for the duration of the Prednisone, and for about 2 1/2 weeks with the vitamins.  About the best we hope for is a reduction in the frequency of the hits.  He tends to cycle high and low on how many he gets hit with during the course of a normal day.  I've seen/heard upwards of 8/day during a high cycle and 1/2 during a low cycle.  I thank God right now that Dr Finkel was completely agreeable to starting a Pred taper right away, as we were ramping up to the high part of the cycle and they were starting to affect his work performance.

@Joe: We absolutely LOVE how you described Dr Goadsby.  Forgive my spelling of his name, I'm half deaf, need to read lips to understand certain spellings and was unable at the time I got the name to be able read the doctor's lips to understand the pronunciation.  I cannot wait to start reading into everything this man has said, as well as seeing if I can't track down some videos of him.  Maybe he has some insight that my husband and I have yet to learn about this efil efil disorder.

The only sad part of this whole process is the O2.  We can try the welder route, but really have to work within the system as having something "not prescribed" can cause a LOT of problems with Auban's work.  It's why we are having to avoid some of the more "grey area" remedies in aborting/preventing this headaches.

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

@helplessnow:  I would love for him to be able to work with the VA in getting a bit easier access to certain things.  VA doesn't work with Active service members unless they are starting the transition from service to civilian life, or are in the process of being medically seperated.  My husband has decided he wanted a job change, and since that outs us a little over 10 years in, he doesn't see a problem with remaining until he has served for 20 years.

But you can bet...the minute we are out, his butt is gonna be over at the VA! And by then, I'll be an old pro at dealing with the VA, having spent (by that point) nearly 20 years for my own health issues.

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!    :o  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. :'(

Check this out:

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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)

As far as insurance covering O2, I do not have insurance.  I use Apria and pay about $23.00 per month for my O2.  They work with me knowing that I have CH.  I keep 2 tanks.  When 1 runs out, Apria quickly delivers another. 

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.  :D

@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."  :)

Akina wrote on Jun 23^rd, 2012 at 10:39am:

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.

That sounds just wonderful. Hope it continues once the prednisione taper completes too.