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?  

Welcome, Amy.  I'm sorry to hear that you've been having such a tough time, but it sounds as if the combination of Maxalt and oxygen has been very helpful.

Others will be along, I'm sure, to discuss various approaches you may not have considered that can be effective as well.


piglet6 wrote on Oct 13^th, 2008 at 7:47am:

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?

Well, yeah....but it's not quite so simple, nor is it quite so magical in effect.  I'll wait for others who've had the surgery to expand on that.    

Again--welcome to CH.com.  Welcome home.

Best wishes,

George

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

Hello and HANG IN THERE!!!

Find your little happy place when you feel them coming on, and take your buddy (O2) with you.  Like everyone else around here, I've had my CH since 1986, I'll always remember the first one.  Not one single doctor would admit the Cluster Headaches, because they dont know about them.  

I've never heard of surgery fixing these permanently.

I've had MRI's and CT Scans, the doctors didnt know what to look for, so they didnt show anything special.

Try taking melatonin 1 hour before bed, I found that little secret on this site and since then, I've been taking one every evening.  It helps regulate my sleep.  You can buy them over the counter in drug stores or super markets where they sell the suppliments.

Good luck and remember that your not alone!

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..

Dr has not given me O2 for home use. I tried to sneak it out but nurse caught me.  :'(

thanks for the encouragement everyone. It's nice to know that there are people here who truly understand. My dh tries, but sometimes he can be so cruel so unintentionally.

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

Dr has not given me O2 for home use. I tried to sneak it out but nurse caught me.

Insist that he does. Like today.

i AGREE. iNSIST.  IF NEED BE PRINT INFORMATION FROM THE WEB EXPLAINING HOW O2 IS THE BEST AND MOST NATURAL WAY TO ABORT A CLUSTER.

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.

I want to know more from people who have had this surgery. Anyone?

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.   START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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


Linda

The way the doctor describes it, I wanna have it! Clip a tiny nerve, never have CH again! Be really really careful here, it is brain surgery, there's no such thing as minor brain surgery. If there was a simple operation that would end CH forever, we'd all be in line, believe me. 30 years with these things, I'd consider COMPLICATED  surgery to never have them again!

About the oxygen. I know EXACTLY  what you mean! I have oxygen at home. After I abort a headache with 02 the feeling of euphoria I get is better then se..........well........let's just say it feels really really good! ;)

Push for the home oxygen, it has been a lifesaver for me and for many on the board. Do lots and lots of research on this surgery. Surgical fixes have a dismal success rate, it's certainly not the quick "snip a nerve and they're gone" surgery you've described.

You're not alone, hang in there.

Guiseppi

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

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

Dr has not given me O2 for home use. I tried to sneak it out but nurse caught me.  :'( .

  That's absurd. Where exactly did ya hide it?

           Potter

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

Hi,
I will have a surgical procedure next week , an Occipital nerve stimulation surgery, and that is a radical move……for me!

The surgery you are looking at, or what your Dr. suggested to look into is, as far as I am
informed, and I believe I am informed, is the last “stroke” when all other methods
have been exhausted, be it school medicine and / or alternative medicine.
“Clip” a tiny nerve that is supposedly causing the clusters is an irreversible situation,
This move had been discussed with me as possibility as well a DBS (deep brain surgery)
and was taken off the list of possible treatments, by the neuro, the neurosurgeon, and the anaesthesiologist, not only it is irreversible, there is no proper proof to its usefulness Vs. adverseness’, that is, a properly documented case study, not to mention a study that I or my neuro are ewer of, there are few anecdotal documentation, but not much more that I know of.
I would try and talk to the Neuro / Dr’s to try the “conventional” methods first, be it O2
and “common” preventive and abortive medicines.
And not start with the most radical (possible) solution, a solution that might not even work………….
It (needs to) takes a lot, be it med’s resistant / over sensitivity, before going the surgical alley, with little
guaranty it will work, and most definitely, an irreversible situation, it took me a lot of convincing to do
what I am going to do, and that is a “walk in the park” comparing to “Clipping” a tiny nerve.
Michael

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

I guess I just feel so darn desperate. I hurt. I really hurt. I know you know this pain. I don't want to feel this pain anymore. I am done. I want to have hope. I live my live with the beast. If its not "in" the beast, its recovering "from" the beast, or "preparing" for when the next beast will attack. This all consuming thought is just too much. I am exhausted physically and mentally. My family is suffering.  My dd is so young I do my best to shield her from all this.  I can't give her my best and that's just not fair.

Quote:

Re: This is so new to me... Help! Reply #17 - Today at 3:41pm     I guess I just feel so darn desperate. I hurt. I really hurt. I know you know this pain. I don't want to feel this pain anymore. I am done. I want to have hope. I live my live with the beast. If its not "in" the beast, its recovering "from" the beast, or "preparing" for when the next beast will attack. This all consuming thought is just too much. I am exhausted physically and mentally. My family is suffering.  My dd is so young I do my best to shield her from all this.  I can't give her my best and that's just not fair.

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.

Linda_Howell wrote on Oct 13^th, 2008 at 6:10pm:

Amy... I knew about Barb and Michael but did not want to refer to their experiences Linda

Linda do fell free to refer to my experience, I (unfortunately) do not get a chance to read the
boards on a daily basis, and I do miss a lot of posts that I could add some of the little
knowledge I have acuminated through my endless search for a better way to deal with CCH,
or just alert me to it….. it is my duty (an honour) to give back, the way CH.com and all of the “residence” of
Clusterville have given me the past 3 years.
Michael

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  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.  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

Getting ready to go for my MRI/MRA. My sleep study is schedule for a week from next Monday. The past two days have been awful. Especially last night. Just hoping for answers soon.

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

Hi Amy,

You might want to talk to Patricia (see "I'm glad you're here - sort of").  She underwent the gamma knife treatment twice and the CH is back.  She might be able to give you a bit more detail.

Jerry

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

Thank you everyone for your good advice. I really appreciate it. I know that I really need to research this before I make any decisions that involve invasively entering my brain.  

I am having a good morning so I guess I am looking at the sunnier side. No clusters last night. I slept 1/2way decent despite a tough past few days. The MRI/MRA went well. I will get the results next week as I am leaving town for a few days and won't be able to see my doctor.

MRI was tough. The noise level was excruitating. They did their best to muffle the sounds. I grabbed my wristed with my other hand and laid as still as I could and just silently prayed. I must have grabbed my wrist so hard b/c my best friend inquired what happened to my wrist when I came out. LOL! Looked like I had been tied down. LOL! Don't like those small tight spaces with loud loud noises around my head.

Here is a question....  I am on Toprol 25mg (take at bedtime) , Topamax 100mg (take in 50 mg doses 2x a day) , Butalbital (abortive- use approx 3-4 x day), Maxalt (abortive- currently using 1-2 times per day), also taking Trazadone for CF. I have recently become extremely dizzy and nauseous. I have virtually NO appetiete. I am having stomach and intestinal issues and have pretty much reduced myself to a diet of crackers and other bland foods. The smell of chocolate causes instant CH. Most food makes me extremely sick to my stomach.  Are these common side effects? Do I need to be concerned? Should I call my doctor or just tell her next Wednesday?

Bump for meds questions.  I don't have the answers.  If you don't get a response here you might try asking again on the Meds and Treatments page.  Sorry I don't have answers, but someone will.

Jerry

Hi,

I don't have any experience with the meds you are taking but I have a general piece of advice.  If you ever find youself asking if you should call your Dr.  Just do it.  Any sudden change or worsening in symptoms should be discussed with your Dr.

Good luck...

-Dennis-

Hi Amy,

I've just rejoined this website after a few years away ..  I was actually booked in to have the surgery about 4 years ago during my last CH cycle but at that stage but my older brother Gary was also a chronic CH and he was into his 18th year with virtually no remission during that time .. so he decided to have the nerve surgery .. his clusters returned 8 days afterwards and he lost most of the feeling in the left side of his face and his left eye was also badly affected .. my surgery was still about 4 months off so I cancelled it .. think very carefully before going ahead with this .. please !  In case you're wondering how my brother is now .. well unfortunately he passed away during a CH attack about 3 months after that surgery .. he suffered a heart attack.

All I can really say is hang in there Amy .. all of us know what you are feeling and what you have to go through on a daily basis. Hey about the oxygen, I don't know if you can just go and rent Oxy bottles there where you live but here in New Zealand I just went to an industrial gas bottling place and they've rented me a C 02 bottle with mask etc .. it's not that expensive either .. so if your doc won't come to the party it might well be worth checking out ?

good luck, Dave

Amy, I'd never heard of Butalbital so I looked it up.

 
Quote:

Dizziness Drowsiness Intoxicated feeling Light-headedness Nausea Sedation Euphoria Addiction Severe impairment of judgement Diarrhea   Fioricet (50/40/325) There are other potential side effects; this list should not be considered all-inclusive. [edit] Dangers and Risks Butalbital is a physically and psychologically addictive barbiturate. Butalbital should not be mixed with alcohol due to increased risk of intoxication, increased respiratory depression, and increased liver toxicity when it is a butalbital combination including paracetamol.

Besides the other meds they have you on this just MAY be a part of the symptoms you are experiencing.    Call that Dr. ASAP   if you cannot eat....that is not a good thing.

Amy,

Butalbital is the first thing my Dr put me on back when I was first diagnosed almost 30 yrs ago.  Nobody knew anything much about CH around there, and he was just trying to kill pain.  It didn't work!  All I got was high.  I still hurt, just didn't care (about anything), then I got dependent, and had to take myself off.  That was ROUGH.  Did it on my own, and went med free for a number of years till I found this place and found some alternatives.  My suggestion for what it is worth is to get as far away from any narcotics (or synthetics) as you can.  They really don't address CH pain, and are way to slow acting to do any good anyway.

Jerry

Piglet, Please try and get the Oxygen for home use. Sugery is a LAST RESORT. Oxygen (O2) for 70% of us will abort up to 90% of ch attacks in minutes when used properly. Minumum 10-15lpm through a NON-REBREATHER mask, the nose canula is worthless,

I know you are desparate but please get the O2 and you just may find some needed hope.

Best, Don

Topamax will sometimes cause a loss of appetite. (In my case that was NOT a downside). I've been on it since 99 and the appetite comes back (unfortunately in my case). Take the whole dose at night if you have any side effects. This worked for me.

Maxalt makes me deathly sick to my stomach. I cannot tolerate it at all. That could explain that one. Might try something else.

Hugs BD