Hi everyone! My name is Amy. I was recently, like three days ago, diagnosed with clusters. I have been battling "the beast" as you all refer to it off and on for the past 20 years. Only recently did I find a doctor who really is listening and finally helping me.  It took moving through four states and across the country to get to where I am today.  The clusters are getting worse. There are times I think death would be easier.  I have tried numerous medications and treatments and nothing has worked until Friday when this doctor gave me Maxalt and put me on 15 minutes of straight O2. OMG! I could have sprouted wings and flown around that room! I feel like a druggie at home with all my preventative and abortive medications. Some work, some not so well. Some kill the beast, some only injure him to let me rest a few minutes before he comes raging back.  

Up until recently I have been able to keep my clusters away from my work. Now I may lose my job.  My boss says he understands but does he really?

The majority of my friends do not even know that I suffer. I have been embarrassed to tell the agony I suffer. I do not want their pity. I know that sounds strange but the ones that do know I see the pity in their eyes and its not what I want.

I am scheduled Thursday for an MRI and MRA. I am also being scheduled for a sleep study. This doctor said she could send me to a neurosurgeon in Memphis, TN to have a surgery done where they go in and clip a tiny nerve that is causing the clusters and I would never have a cluster again. Anyone ever heard of this?  

Amy,

Many things to consider here, and I know it is difficult to sift through everything.  Personally, I would not take any form of brain surgery lightly. 

Sadly, I am relatively new to this whole thing myself, and I don't have much advice to give.  Being a devout man, I can only offer prayer and faith in God as another source of weapons for fighting the beast.

I will keep you in special mind throughout the day.  If you would like any more advice on bringing this situation to your spiritual life, I'm kinda like one of the "spiritual directors" here, being that I'm a seminarian studying to be a Catholic priest.  I humbly offer myself if you would like to talk more.

My prayers are with you.

God love you!

-Joe

Ur not alone.Remember that.I feel for you amy. Getting a neuro that is knowledgable is the key. Ive been through mri's and cat's as well as incorrectly misdiagnosed. Until that is, That I found a doc who understood what I had and how to treat. for me its verapamil(prevent), o2 (abort), and on occasion imitrex injection (abortive). I now have somewhat of a normal life. good luck Amy..

piglet6 wrote on Oct 13^th, 2008 at 11:19am:

Insist that he does. Like today.

If you need infor re. meds, etc. then let us know.

Re. the boss: You're safe until he tells you that you are not. Put that issue on the shelf for he is the controlling agent.

Re. your friends. Love involves giving but also receiving! You are in control in that you can tell them both what is happening to you--that giving them some relief. And you can tell them HOW you want them to love you: what should they do or not do. Only then can they truly give to you on terms which benefit you when you are sick.

Amy,


There different proceedures out there and I am not sure which one this Neuro is talking about.  I have heard of a few here who had "that nerve clipped"  only to have the CH go directly to the other side.   

Go here and read.   Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

This is NOT something to be undertaken lightly and un-imformed.


Linda

As a person who has HAD surgery - don't believe it's SIMPLE or a snip of a nerve!!! Or that's it's a CURE!

Had surgery done back in 99 - Have optic nerve damage (was blind for about a year after the surgery) am numb on the left side (have learned to live with that). Have a paralysis in my chewing muscle on the left side (that was "supposed" to go away within about a month - I'm still waiting).

Don't get me wrong - at the time (before the surgery) everything was explained to me (even the part about death could occur - at the time I didn't see a downside to that).

But about 9 months after the surgery my neuro and I discoved topamax (not for everyone) and lo and behold it put me in remission and I became HUMAN again. Have been on it ever since and for the most part - it works pretty good. I still have CH and I'm still chronic, but NOTHING like I was when I had the surgery.

O2 has been a livesaver and hopefully I'll be off all meds before the next decade, but for now I can prevent a lot of headaches and can abort the ones I can't prevent.

Am I sorry I had the surgery - that's like crying over spilled milk. Would I recommend it - No way!

Before you jump into anything READ this board and see what your options are. O2 has worked really well for about 70% of us (if used properly). There are preventatives out there that have been lifesavers for a lot of us and who knows what might pop up next month. Brain surgery is just too darn PERMANENT.

Hugs BD

I wouldn't let a neurosurgeon clip nothing but his tie.
all the best and get to the 02 applied properly you dont need the clippers.
thebb

Amy...

I hope that with the feed-back you have recieved here as well as reading the links I provided you, has helped you make a more informed decision.   I knew about Barb and Michael but did not want to refer to their experiences so I waited til they saw this,  so they could speak for themselves..

There are far too many alternatives to what you are contemplating in my opinion.  I've been chronic for 21 years.  There is no way in hell I would even consider this.


Linda

Quote:




Amy,   Pretend I am your Mom.   I am sitting you down looking you straight on with my "Mommy" face.

Of course you are desperate.   We all know what the heck  THAT feels like.  But....desperate does NOT mean you should take an other-wise healthy brain and start poking around in it.    PLEASE read around here.   I believe you will be so surprised at your alternatives.


     end of my Motherly advice to you.

Amy,

You just heard from Mom, now would you take some advice from say an uncle?  You say you are desperate, and we can identify!  You said you are new to this, but have battled it for a long time.  I presume you are new to the diagnosis, but have suffered unknowingly for years. You are not alone in that either, BUT you also have something you didn't have before, and that is US. 

First, DON'T go out and do something permanent without carefully thinking through ALL of the ramifications.  That is not something you can do quickly.  Since you need to take the time to make the decision also use that time to find a way to deal with the problem at hand.  We can help with that.  As for the snip, all I can say is that where I grew up if a man came at you with a knife you pulled out yours.  Nobody, but nobody is going to cut on me unless there are NO other alternatives available.  I applaud Michael and Lizzie for what they are doing with ONSI, and I wish them the very best.  Their situations are different than ours in their intractability (you have not established that yet), and they have done extensive research beforehand.  The nerve snip you are referring to from the limited number performed and the results is not a good option in my opinion.

Second,  print out some of the information on oxygen to the left of the screen, take it to the Dr and DEMAND that he give you a prescription for it.  It is inexpensive, and has NO negative side effects!  Many of us can knock back an attack in 10-20 minutes if used properly.  To go along with the oxygen get some energy drinks, ie Red Bull, RipIt, Monster, etc.  At the first sign of an attack chug one down as fast as you can chug it.  Without stopping for breath if possible.  I can knock back a HA from an 8 to a 2 or 3 in about 5-10 mins usually.  that is not your preferred line of defense, but it is there when you need it.

Third, for your boss and friends, go to  Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; Print it out and share it with your boss and others who care about you.  your boss obviously knows you are dealing with an issue and this will give him some understanding so that he knows you are not just malingering, but are dealing with a serious issue.  He will understand that you just now are finding out what the problem has been and can now begin finding solutions.  for your friends and family who CARE about you it gives  way for you to explain what is going on without engendering pity, but gives understanding.  They already know you have a problem, but now they will have a means of dealing with it as well.

I didn't mean to write you a book.   Hope this helps.  You now have a new extended family that you didn't know you had.  We are here to help. Please let us.

Jerry

Hoping you get a diagnosis and some treatment. good luck with the testing, and try to remain calm. You will get through it.
all the best
thebb

G day piglet 6

      Yeh I had nerves cut March last year during my last cycle. This cycle finished in November last year so no It didnt work.
I actually woke up from sugery with a kip 10, nurse didnt know what to do.
My cycle proceeded as normal, except I had a 2" cut on the back of my head and my right scalp was numb.
Neuro said HA were phantoms but he was wrong.

I am back in cycle at the moment so nothing has change.

I agree with barb There is no way I would do it again, but this is all in hindsight.

You do get used to the numbness fairly quickly though.

I am not saying this dosnt work for everybody but it didnt for me.


Hope you find the answer for you .

Regards

Wayne