Found this while doing a news search for CH...


Quote:

Electrodes are also being used to reduce the pain of cluster headaches. In a trial, patients are having electrodes implanted into the neck to stimulate the occipital nerve. Earlier studies have shown this helps reduce symptoms. Cluster headaches are excruciatingly painful headaches that occur in patterns, or clusters. Read more: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Reminds me of old fashioned lobotomies   :D  ...but it is an interesting approach.

Thoughts?  Anyone tried this in the States?

<Edited to add>
MedScape link another article:
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<Edited again to add>
Yes, I know many of you know about Trigeminal and Occipital Peripheral Nerve Stimulation already as I have seen other posts on it.
But... I've had a rough day with CH and my brain is not functionng well and there maybe some newbies who haven't heard of it yet. 

Also I am curious if there is anyone here who has had an implant done and what the results were. 


Quote:

Ginger S. Jokingly asks... Does the remote open your garage door too ?

 :-?

Not so far fetched! Carrie  ( Lizzie2) is a patient of the ONS?? electrodes. At the recent OUCH Convention, she shared her experiences with the decision to go with it, the original complications, and what has turned out to this far be a success story! Doctor Matharu did quite a presentation on the past, present, and future use of this technology for CH.

Joe

Joe:

Wish I could have been there. 

Any word yet on the possibility of audio from the conf. ?


Lizzie2: if you see this post please share your experience!   8-)

I know the recordings are a work in progress. Don't know the time table.

Joe

Ginger, I'm hoping to be able to do something with video from the conference.  Not sure of the legalities of reproducing them.  We'll discuss that at the next BOD meeting.  Had hoped to do something with it before now, but haven't even had time to review them and see how bad of a videographer I am.  If you haven't heard something from us or from me within the next four weeks or so drop me a line and see where I am on it.

Jerry

Will do Jerry!  Honestly I'd forgotten until Joe brought up the conf. again  ;D   I've had a hellofaday [smiley=hammer.gif] with the ch demon from hell pounding away at me and I'm still in a haze.

with the ch demon from hell pounding away at me and I'm still in a haze.

That sucks >:(

Joe

Wow, look at Joe 6992 posts. Dude, you live here or what? :)

QnHeartMM wrote on Aug 7^th, 2010 at 11:29am:

Wow, look at Joe 6992 posts. Dude, you live here or what? :)

He has now hit an amazing 7,000 posts!

Keep it up Joe!! I know u have helped me alot along with alot of other peep's  :) Thanks!

[smiley=bow.gif] And now back to the topic at hand...


JustNotRight wrote on Aug 6^th, 2010 at 5:42pm:

Found this while doing a news search for CH... Quote: Electrodes are also being used to reduce the pain of cluster headaches. In a trial, patients are having electrodes implanted into the neck to stimulate the occipital nerve. Earlier studies have shown this helps reduce symptoms. Cluster headaches are excruciatingly painful headaches that occur in patterns, or clusters. Read more: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Thoughts?  Anyone tried this in the States? <Edited to add> MedScape link another article: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE <Edited again to add> Yes, I know many of you know about Trigeminal and Occipital Peripheral Nerve Stimulation already as I have seen other posts on it. But... I've had a rough day with CH and my brain is not functionng well and there maybe some newbies who haven't heard of it yet.  Also I am curious if there is anyone here who has had an implant done and what the results were.  [quote] Ginger S. Jokingly asks... Does the remote open your garage door too ?

 :-?[/quote]

Would love to hear Lizzie2 comments and experiences with this!

JustNotRight wrote on Aug 7^th, 2010 at 7:24pm:

:-?Would love to hear Lizzie2 comments and experiences with this!

Why don't you PM her and alert her to this thread?

Brew wrote on Aug 7^th, 2010 at 7:26pm:

JustNotRight wrote on Aug 7th, 2010 at 7:24pm: :-?Would love to hear Lizzie2 comments and experiences with this! Why don't you PM her and alert her to this thread?

;D  Great Minds Brew...was doing that while you were doing this.  :D

can you use a tens unit for this?
i have one of these
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The doc in Atlanta talked about those units, sez they don't work because the nerves you need to hit are "sheathed" so external stimulation with the electrodes from the TENS unit does not ZAP the targeted nerves. You gotta get burrowed inside the sheathed areas of the trigeminal or its tributaries.

Joe

Guiseppi wrote on Aug 8^th, 2010 at 1:00am:

The doc in Atlanta talked about those units, sez they don't work because the nerves you need to hit are "sheathed" so external stimulation with the electrodes from the TENS unit does not ZAP the targeted nerves. You gotta get burrowed inside the sheathed areas of the trigeminal or its tributaries. Joe

thanks joe.  ;)

well how bout this  :D
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NOW I think you're onto something Johnny!!! ;D

Gah - I like how the tone of this thread is Frankenstein and Electroshock (old school style)...  If you want to hear my story, I'll tell it, but knock that stuff off... :)  ::)  :-*

P.S. Just a bit short on time to type the whole thing right now - we're getting ready to leave for the day in the next half hour, but I promise to write it tonight if you don't mind waiting!! :)

Patiently waiting  8-) 

Have a Great Day!

For those of you with ANY interest in this treatment, the wait will be worth the read. Her talk in Atlanta was great.

Joe

Johnny,
The TENS unit is helpful for the neck strain following a bad hit, but does nothing for the CH.

Jerry

Callico wrote on Aug 8^th, 2010 at 7:04pm:

Johnny, The TENS unit is helpful for the neck strain following a bad hit, but does nothing for the CH. Jerry

thanks jerry ill keep that in mind. ;)

So in the interest of not reproducing an hour-long talk in one post, I'm probably going to keep this a bit shorter than what I did in Atlanta, but feel free to ask me anything about it!! :)

For starters, the background: I have two headache types.  The first, New Daily Persistent Headache, is essentially a type of chronic migraine that I got on January 17, 2001 when I was 20 years old as a sophomore in college.  It has never left.  The clusters came on in roughly the fall of 2003.  In the spring of 2003, I was in a figure skating class and had a really bad fall with a concussion.  After that, my "usual" headache wasn't the only type I had, but it took quite some time to discern what it was I did have.  At first, I had excruciating headaches that would come sometimes up to 20 times a day or more, and would only last for a few minutes.  I definitely couldn't sit still or relax during these, but they were brief - but then they came back a lot.  As time went on, these seemed to morph into what became my cluster headache pattern for several months: attacks every day at 5pm, 7pm, 9pm, 11pm, 2am and 4am.  I was in my 5th and final year at Penn State at the time, majoring in music - it was taking me longer overall because of the headaches and the problems that I'd had come with them.  Each headache lasted 45-90 minutes, and even though there was a start/stop, it was very hard for me to describe them to my neurologist when I first went to see him as I still had headache time in between - from the other type.

I had actually already been to this site before I got diagnosed, and some wonderful people here helped me to sort out what was going on, and I was able to finally get the help I needed from my doc, who is a really great headache specialist.  It only took time to diagnose because I wasn't presenting in a normal fashion and I'd already been going to the center for the other headache type.

With the history of both headache types, I was inpatient in the hospital a lot to try to break them up and get them under control so I could go about school.  After the amping up of verapamil to 960mg per day, I no longer got them on the 5pm, 7pm, 9pm, 11pm, 2am, and 4am schedule anymore.  I had less, but they were random.  I'm not sure if that was better or worse - but I think better, since I actually got more than 2 hours of sleep a night sometimes... :)  Sadly, the verap at high doses tanked my blood pressure, sending me to the ER at least once back at school and creating problems for me many times aside from that.

In Atlanta, I showed slides of all the medication and therapies I tried to bring both headache types under control.  There were about 5 slides full of lists of mainly drugs tried.  I failed almost all of them or else they had such bad side effects that I had to stop.  I took prednisone tapers at one point every 6 weeks or so, plus I had received IV steroids in the hospital on numerous occasions.  I ended up getting avascular necrosis, which is a loss of blood supply to the long bones (for most, in the hips - for me, in the knees) that results in a dying of the bone and pain.  It can lead to needing joint replacement - I was diagnosed with that at age 23 when I had just started nursing school and knew I was going into a career where 12 hours on your feet was a common occurrence. 

I could use oxygen, but for someone with my lifestyle, oxygen isn't always very convenient.  For one, I am a neonatal nurse, which means I take care of babies who are extremely premature and/or very sick.  I can't wait for a cluster headache to come while I'm at work and then abort it with O2.  I don't care if O2 would work for me in 3 minutes or less - I can't afford that kind of thing to happen to me while I'm caring for one of my patients, so my whole life revolves around keeping them away while working.  I was fortunate enough to be able to do this with Frova or Amerge.  When I worked 40 hours a week, I took Frova on the 12 hour days and Amerge on the 8 hour days, as per discussion that I was doing this with my neurologist.  I'm very fortunate that worked for me, but it's not a solution...  And now I've got different lifestyle issues - I work 2 12 hour days a week, but I'm in school for my nurse practitioner degree.  Still can't use O2 while at clinicals for grad school...  Can't use alternatives or I could lose my license, and my career is one of the things that has held me here and kept me going through it all! (In addition to some of the absolutely wonderful people here - including Helen, who I went to visit in England in 2006 and who really helped me through some pretty rough times.  And BillyJ, who is another one who talked me off the ledge on nights where I'd get sometimes 10 hits, but sometimes couldn't take anything because I'd already used my triptans to go to work.)

So all this, is what led me into looking into the nerve stimulator implant.  Going to continue in another post, since I think this will get too long to post in a second... :)

So actually in nursing school was the first time I went for consult on the ONSI (Occipital Nerve Stimulator Implant).  I saw a neurosurgeon at my hospital who does this procedure.  I liked him immensely.  Long wait in the waiting room, but he truly spends a lot of time talking with you and going over everything.  At the time (December 2004 I believe), he didn't feel the ONSI would be of much use for me.  He had done many nerve stimulator implants, but at that point wasn't doing it a lot for headaches, so in the end said that I should come back in a few years and maybe they'd have found something that would help. :)

In the summer or fall of 2007, I had a regular appointment scheduled with my neurologist at the headache center, and Dr. Manjit Matharu was visiting from London.  (He was one of our speakers at this year's convention, who I did my talk with!)  He and my neurologist strongly recommended that I go back to the neurosurgeon for another consult.  At first, I was hesitant and mentioned all the things I had been told then, but they explained how these things were viewed differently now.  I made another appointment with the neurosurgeon in December 2007, and this time, he felt it would be of benefit.  We talked about doing a bilateral occipital and right supraorbital implant with the battery in my abdomen.

Had the trial in January 2008.  The trial is a bit of a touchy subject.  Experience now shows that the trial is not of great benefit in predicting who will have long term success with the implant, as it can take up to 6 months or longer sometimes to determine if the implant will truly have a max effect.  But you have to do the trial as part of the procedure, and I was fortunate to see enough benefit at the trial that we could go along with it.

I didn't actually have my first implant until May of 2008.  I say first, but it was planned to be the only - I happened to get a pretty bad infection that really showed up about a month and a half after the implant was in place.  My first implant had the bilateral occipital and right supraorbital electrodes over the nerves, with the battery pack implanted in the right abdomen.  It was 5 total incisions, and I went home the day I had the surgery.  I had some initial programs put into the stimulator that day, but then worked with company reps to program it more extensively about a week after surgery.  It helped right from the start, but it wasn't until I got the second one (that I have now) that I saw that it truly did take time for the max benefit to appear.

As I mentioned, bad infection - stim had to be removed in September of 2008, and I had to do IV antibiotics for a few weeks at home.  Not fun, but I had seen enough benefit in the stim to want to get another one placed and try it again.  Infection is a risk, although bad outcomes are not common, but I happened to land it.  I think overall it makes me a good person to talk to about the stimulator because I didn't have the ideal experience, and I'm still glad I got it!!

I got my next stim implanted in January 2009 - this time only right occipital and right supraorbital - we didn't want to cross the area where I'd had the infection the worst, which was right on the back of my neck.  So we kept it simple and only implanted on the right, which was the worst side for the pain.  The battery for this one is in my right chest.  It's a smaller battery than I had the first time around, and I like it much better.

This time around, all went much better.  Probably 6  months or so after I started seeing the true benefit, which was a reduction in attacks to 0-2 a day for the most part.  Some days none - never enough to not be chronic, but still, I'll take it.  Other days up to 2.  Sometimes I still go through periods with more  than this, but not often.  It's not made it 100% better, but I never expected it to.  I no longer take daily medication for cluster headache, but I do for the other headache type.  I use frova still, but not as often as I used to.

Overall, it's been a blessing!!  There are reimbursement issues as it isn't actually FDA approved for cluster headache, so it's an off-label procedure.  It's quite complicated, so I recommend that anyone interested in it discuss this with their surgeon to find out how reimbursement works.  Also, it's only for people who are medically intractable and chronic - failed multiple things, etc.  It should only be done at centers where they have a great deal of experience in doing it for head pain disorders.

Finally, not much research has come about on the supraorbital lead yet, but the data will be coming.  For me, it has made a huge difference.  The area that had a constant bruised feeling over my right eye, for one, no longer feels that way.  I'm glad I have it. :)

PF wishes to all :)

Excellent posts Lizzie and very informative, my sincere appreciation for your time and effort in posting it!

I am not at the point of thinking of this for myself yet, but for others that may be this post could be used to their benefit. 

I have one question for now.  This may seem like a silly question but this would be a continuing concern to anyone getting or thinking of getting the implant.

Q. The battery, does it need replacing and how does that take place?  Is it open so you can do it yourself or do you need to see your Dr. or have another surgery to replace the battery?

Thank you again so much for the information and sharing your experience with the implant!

Ging...


P.S. BUMP  please   ;)

Ginger,

Forgot to include about the battery - silly me!  The battery is rechargeable.  Mine is FDA approved to last 10 years, but may last even longer than that.  I was told I'd need to charge it once a week, but I'm going about once a month at this point.  You use an external charger with a paddle that lies over the site of the battery, which is under the skin.  It takes me roughly an hour to charge - sometimes more or less, depending on how long it's been since the last charge.  When it gets to the point where charging is requiring a schedule that is not practical, then they will replace the battery through a surgery.  Not nearly as big a surgery, however, since it's just the battery site they open.

Hope this helps.

Carrie

Thanks Carrie!  That was helpful to  lot of folks I know. 

Jerry

Nicely done Carrie! ;)

Joe

Thanks Carrie!  Excellent Info!

Again Much Appreciated!

Carrie : I just wanted to thank you again for your detailed posting on the implant and for sharing your experience with it, with all of us!

On another note; it has been suggested through a PM (all be it by someone I do not get along with well) that I owe Carrie an apology.  I am sure you already know this Carrie but here goes...

I hope you all know I meant no harm nor foul in my initial posting with my question asked completely in jest (as the words before the question stated) and with out the knowledge that Carrie had the implant, as you can tell by subsequent posts.

I live and die by my sense of humor and even if crass at times, it is how I deal with CH and the more difficult things in life. 

If you felt slighted Carrie my sincere apologies and please know nothing was directed at you personally.

Again your input on the topic of the implant was invaluable and much appreciated!!

[smiley=hug.gif]
Ging...

Crass replies (as you have said they were) ...are usually tolerated from friends and family who have known us for years and years. Not so much when someone you don't even know, have ever met, etc.

EXAMPLE:  I can poke fun at DJ for for being bald and having a zipper on the sides of his head because I have known him for years and he knows I love him.   I also know the hell he went through to have those scars/zippers. 

suppose for a min.  DJ is at a gas station pumping gas into his truck and a perfect stranger says "hey Zipperhead"   totally different ballgame!!!!!   

When you meet someone face to face, like at a convention or a get-together and get to  know them and the struggles they went through, it gives a totally different perspective.

My personal thoughts on the matter Ginger.

Carrie, your experiences are an inspiration to all of us who are hopeful that something can help us, especially us,  who are chronic.  You keep on keeping on girl.   :-*

Linda_Howell wrote on Aug 11^th, 2010 at 7:43pm:

Crass replies (as you have said they were) ...are usually tolerated from friends and family who have known us for years and years. Not so much when someone you don't even know, have ever met, etc. EXAMPLE:  I can poke fun at DJ for for being bald and having a zipper on the sides of his head because I have known him for years and he knows I love him.   I also know the hell he went through to have those scars/zippers.  suppose for a min.  DJ is at a gas station pumping gas into his truck and a perfect stranger says "hey Zipperhead"   totally different ballgame!!!!!    When you meet someone face to face, like at a convention or a get-together and get to  know them and the struggles they went through, it gives a totally different perspective. My personal thoughts on the matter Ginger. Carrie, your experiences are an inspiration to all of us who are hopeful that something can help us, especially us,  who are chronic.  You keep on keeping on girl.   :-*

Um...   :o

JustNotRight wrote on Aug 11^th, 2010 at 5:12pm:

I live and die by my sense of humor and even if crass at times, it is how I deal with CH and the more difficult things in life.  Ging...

I did not say my replies were crass nor were any of them intended that way. 
Nor was I ever poking fun at Carrie!!!

I Am VERY SORRY If Carrie was offended. believe me when I say "NO Offense was meant towards her or anyone else" needless to say.  

I think we can all agree that Keeping a sense of humor in dealing with the beast and all related meds, treatments etc. is a better way to deal with it than not. 

i would like to abort with 02 in three min or less(and five and six and seven)
where do i sign?:(

damn o2 suppliers :'(

You and me both Black, now I just need A Dr to prescribe the damned O2  :o

I Hope you Feel Better Soon!

LMAO...a sense of humor is indeed mandatory around these parts.


Black, can you not get 02? Go here and print it off for your Dr.   START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Linda - that was very sweet of you to say!  Thank you!! :)

And thanks to everyone else as well!!

Ginger - As I said via PM about this - I tend to be very sensitive even to jokes about the nerve stimulator surgery.  Yes, it's surgery and I know that turns people off...but I've been jumped on enough times about how "barbaric" it seems that I get a bit touchy about it.  It was wonderful to get to do the talk in Atlanta because I think people respond a bit differently when they hear you actually talk about it rather than just read what you wrote. :)

No worries - it's all good. :)

Black - I don't know that anyone gets 3min or less, tho the people who use the demand valves and the very high flows just might!!  I just know that even 3 min still wouldn't help me on the job! :)

PF wishes to all!! :)
Carrie :)

Lizzie2 wrote on Aug 11^th, 2010 at 11:03pm:

Black - I don't know that anyone gets 3min or less, tho the people who use the demand valves and the very high flows just might!!

I do about 60% of the time.  ;)

I use a demand valve and at about the 3 minute mark the pain usually stops building, and as early as the 6 minute mark it's gone. 10 minutes for me is unusually long.

Joe