On the (long) road to the surgical procedure OBS (occipital brain stimulators) that will (I hope) reduce the CH attacks to about (and below) 20% of the “normal” count of attacks without (?) dependency on the “pharmaceutical”
reatment / world.

The long road is due to the fact that the current treatment (GON)  See  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE   have “scarred” my defence systems to the
point that any surgical attempt has to be “prepped” to avoid any possible risks, risks that can accrue with any surgical procedure, and more so with “stressed” defence system.

I will try, and describe and provide, as much as I can “first hand” information, subjective at times, but mostly
objective, I can not promise to post every thing, I lately lack the discipline to do it on a regular basis ,but I will try
to take you, if you’d like, with me on this journey.

I will start the process end of this month, with a meeting with all the involved parties, but mainly with the neuro-
surgeon who will give me a detailed description of the procedure, risks, during and after the surgery, the “healing”
process, adjustment to living as a “cyberbrain” man.

I am, at the moment, at the point where I am “forced” to take this step; I was happy where I was with my “Injection”
but my body was not.
After the “no choice” decision to take the step, I have gone back to Carrie’s posts, and some other posts, trying
to start and build a picture of how it will be, after the surgical procedure the day after the week after and a year later, but some how I find my self very uncertain, almost pessimistic (at the moment), most likely it is normal, and the pessimism will subside along the way, the more info. I will have, the clearer the picture will be, the easier to understand the situation I am facing, and with that most likely I will start and look forward to the up coming (possible) change, positive or negative.

Michael

I am very interested and want to follow you on this journey. i have read about this and would like to hear first hand account.

This is a huge step Michael.  I know from reading your posts that you have really been through a lot.  I make no judgements.  I only wish you luck on the road to some well deserved PF time.

-Dennis-

I'm with Dennis. Good luck, you deserve something that works for you.
all the best
thebb

Best wishes to you.  Try to stay positive as you embark on this journey.  It may help for a more pleasing outcome.   ::)

Much luck,

Jeannie

Michael,

You know wherever this journey takes you, we'll be following along sending our very best and strongest vibes.

Pete & Joyce

As promised some time ago I have gathered the history of my CCH as well as look into the future with
OCCIPITAL NERVE STIMLATION
As the document is way to big to dump it on DJ or ask him to help me put it on CH.com
and waste band width that is not my to abuse I have set up a website with all the info.
I am a beginner in website design, I am sorry for some mistakes
spelling as well as in the design, I will improve with time……
Plese do visit it and do comment (on this thread) I don’t have all the info.
I probably  have mistakes in some of my inf. I do need your help…….
If you know of articles research or other info that I should add to the
info. I have do send it to me I will add it ……..
This is the link:

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

Michael

Michael,

Thanks for the update.  I can tell this is going to get more and more interesting with each update.

V/R, Batch

I have added some technical info today to my “home page – my CH”
about Occipital brain stimulators

Michael

LINK:

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

290908140

Michael, I too, have investigated the surgical implant of  Medtronics device to stimulate the Occipital Nerve.  My headaches have been a part of my life for 30 years now.  I am not the typical male - therefore, I was incorrectly diagnosed for years.  I have been on just about all treatments known to mankind.  I had to go through extensive phsycological and physical testing to determine that I was indeed, a candidate for this implant.  However... prior to scheduling this proceedure, I tried a relatively new proceedure - radio frequency of the occipital nerve.  I had success with this proceedure for six months.  I just, this week got the CH back and am scheduled for next week for radio frequency.  Please keep me posted on the outcome of your surgery.  I am still contemplating this.

Dana

much love to u brother.

a happy new year and a peaceful journey

Hi Michael,

Just visited your website. First, it looks great. Second, I found it very interesting and learnt some new things.

Keep up the good work.

Pascal.

I up dated my website (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) today, have some problems with the FTP server which I will  try and solve in the next few days…… also I will try to have my CH table with all the info
I collect on line.

Michael

Hello Michael,

best wishes for a happy new year to you and your family!

There is a new article about ONS for Hemicrania Continua, some of it may be valid for CH too?

Brian Burns, Laurence Watkins, Peter J Goadsby: Treatment of hemicrania continua by occipital nerve stimulation with a bion device: long-term follow-up of a crossover study. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Published online October 8, 2008. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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


pf wishes,
Friedrich

 

There was a literature review about ONS earlier this year,

Jasper JF, Hayek SM.: Implanted occipital nerve stimulators. Pain Physician. 2008 Mar; 11(2): 187-200. Review. Free full text: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Hi Friedrich, (and all)

Tks. for the wishes for the New Year!

I am still at work (it's 6:30pm and will stay until 10:30pm on a Friday evening) so didn’t get to go over the links you have send me, but will do it on Sunday!!

Any old / new article about ONS and headaches is of interest for me and
more so for CH.
Do (all) pls. send me any thing you find.... it good to know more
even if at times it not so promising, its still one "more brick in the
"wall" of know how.... and understanding what I am going to go through
with all the hopes and possible disappointments.

And for some of us, that is CCH’ers that can not / does not react positively to the various
medications, this might be a very good alternative, as its for me, a light at the end of
a tunnel.

I have to add that the situation I am in now, with no comprehensive preventive “plan”
and being “hammered” to the extent that I might have to consider giving up my job,
and that would be for me, a “death sentence”. I simply can not see my self not working,
I am not ready for it!
This is not a cry for help or what ever; it’s just that I am not ready to give up!
I have to find a way to have it the way I would like it to be, to win (loose) one more battle
and with lots of optimism win the war!

You all have a nice week-end

Michael

one more week.........

and then?

Micahel

Tomorrow I will be admitted…..
the long road to the surgical procedure OBS (occipital brain stimulation) that will (I hope) reduce the CH attacks to about (and below) 20% of the “normal” count of attacks without (?) dependency on the “pharmaceutical” treatment / world, is at its end…..
To be honest, until today it was a far and obscure thing, not that I did’nt know what I am going in for
I have educated my self, I am ready in the impirical way, but now that I stand befor it seems
that I gat sort of tens, wonder how it will go, will it do what I am so hopeful it will do for me,
how long for positive results (if at all) to show, will it be (another) disappointment……..
will see…..  I am though confident I am doing the right thing (for me)……
I will (try) and inform,

Michael

Good luck to you.  Please keep us updated.  Sending prayers and vibes your way that this works for you.

Big Hugs  [smiley=hug.gif]

Jen

The surgical procedure is past me (the first one, one more to go) the stimulator are
in! on the left and right..... as well as an extra one for (if needed ) DBS........

Had 2 attacks and with some effort (training missing) managed to abort the attacks.....  and some O2
but cant say if it works or not..... need some time......  
As I am still hurting from the surgery , didnt go as hoped, smooth, had an attack during
the surgery, they< had to put me to sleep all the way........... and did not implant the generator
in its place......

It was not a "walk in the park" I was hoping, but I will survive......

Michael

Thinking of you and hoping for relief.
all the best
thebb

I had the opportunity to Skype with Michael when he had sufficiently recovered from the general anesthesia for his implants this afternoon, but only after he had called to speak with Svenn...

That speaks volumes about the lengths fellow cluster headache sufferers will go to reach out to others in need...

Take care,

V/R, Batch

The stimulator is running, out of 5 attacks 4 aborted with out problems or prolonged treatment, the 5th attack I had to supplement with O2, which is rather normal......

The test now is to have the stimulator running at the times the attacks are "due" that is
to have it running before the "due" time and with that to "skip" the attack.....  we don't know how effective it will be, but its part of the "regime" and I hope it will be as successful as we hope it will be....
It is still way to early to make a "judgment", it will be very irresponsibly from me, but I do hope in the first place, and secondly I have promised to report abut this adventure.

Michael

We are pulling for you Michael. I am hoping this will be your magic bullet.

Hi

I am at home for the week end (until Sunday) the  ONS (Occipital nerve  stimulators) generator is hanging out of my body and 2 lead
weirs are going in to my body and up to the Occipital nerves (left and right) just under my shoulder.
I will post some pic. later in the day……
As to (very) primary results, it seems (like Lizzie said) very efficient, as the system that was put into me is
a new  version I have it “running” all day on a “maintenance” level, with the idea of using the generator and
the ONS leads on the nerve with a very low pulse frequency, intensity, and other factors as a Preventive
with the target of reducing the attacks by about 75% and mange to abort or control up to about 85% off the
episodes, and the rest to control using “normal” methods such as: primarily O2 as abortive and in my case
for extreme situations Zomig Nasal.

As the engineering company is located in Boston USA and there is no “modem” type connection to this type of
“generators” the programming is sort of a drag, and takes some time, also there is a very competent person
in Switzerland that dose the “on site” programming, but I do hope that very soon the hand held unit will be able
to “go on line” and we can refine the programming so I get a higher effect, will see…..

I did (last night) get a full night of sleep (10pm until 8am) with out even one single attack and that is some-
thing I didn’t get in 4 weeks……. I just would like to believe its due to the implant and not just a bizarre
coincidence, time will tell…..
I (in this post) do not encourage or promote this method - ONS, nor do I suggest it is a good way in fighting CH!
All I do is report what I have observed until now, my feelings and thoughts, as well as wishful thinking,
And yes I know that CB is a good way, and w very promising method, I have talked it over with more then one
Dr. and Professor I have talked to… and we all have come to the same conclusion, it bears more then just
potential, it is likely to be one of the future methods, but as long as it is on the ILAGAL end of the line, it is
a taboo for me for obvious resones… and (a taboo) for the team that try to help me in any way they can to battle this
malady.

I will try and add more info and the Pic. of the surgical procedure next week, as well as more info about the next
steps…..

Micahel



(St Gallen 311008498)

Positive thoughts and vibes to you, Michael.......such a journey you are on, Sir....

Updates very informative....thank you.

Wishing you well,
Jackie

Still pulling for ya here Michael. Hey you think that has enough power to start the car? ;)  Just kidding. Keep up the fight.
the bb

I add 2 pic. to illustrate my "now" situation......
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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

Michael,

Your photos give a new meaning to the term "Wired."

Hang in there...  I know this can't be a pleasant phase for you, but I'm confident the end results will be worth the pain and discomfort associated with this procedure.

Take care,

V/R, Batch

Ill be soon going back to the Hospital for the next round……
As It seems (only about 5 days) “this” OBS gives me 80% relive
which is good….. but way to early to even make a good assessment….
not to mention statement… just a pulmonary observation, I just simply hope
we (the team around thisventure) will find a comprehensive balance to provide
me with a tool that will give me a better control over my “head” and a good
opportunity for some other fellow sufferers to fined in this venue a possible route to
consider based on my observations and reports, as well as Lizzie’s pioneer experience.


One more "little" comment,
I have read about a new term….. (ill use Mel’s butten)
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGESTART PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

                                           (tks. Mel)

I am very much disturbed by this, I have pushed in the Medical institution I am in
for better understanding to the needs of CH’ers, and that included O2 in a flow that is
at or higher then 15 lt./ min., and the need for proper aquipment,
to go and find out that in our own rows we have members
that not only bluntly declining O2 as a comprehensive method, they treat us as “drug dealers”
well my answer is:

stupidity is just a painful manifest of Ignorance,

and then going public and trying to defend it is just sad……

This saying just jumped into my maind:
“The pain of the mind is worse than the pain of the body”

Any way I wish you all a nice week end
Michael

Hi

Just finished the second round....  very much groggy...  

Michael

Hope ya get some rest and shock the demon into submission. 8-)
the bb

Hi
As it seems for the moment, with only some pain meds. that I shock the demon away.......
I cant say with high certainty that it works..... as I still do use some pain mads for the
surgery wounds......  but the attacks are now 1 (tolerable) in the morning, at 5 am, and if
I use the “Shocker” correctly and supplement with O2 at 30 Lt./min. With a proper mask
(I AM AN O2 PUSHER).
I have the attack under control with in  about 5-7min.

Again it is way to early to judge, and hauler, I have the magic bullet,
for start it is not the magic bullet, and I don't think it will ever be!
It is simply a good tool to reduce the suffering, mainly for sufferers that
are limited in the choice of preventives, or have no preventive that work for
them...... or are limited by other medical condition.

But I do believe, and confident that this alternative is a very comprehensive
alternative for CCH'ers, and if any one would like to have more information
do ask, I will try to provide with an answer, or ask the Dr's if they can help me
and provide with a proper answer..... or talk to the specialists from the manufacturers
Advanced Bionics in Boston and in Switzerland.

Michael

As you know from our skype conversations, Michael, I am VERY interested in what you are doing, as it may be the route I need to take.

For those of you that might be interested in what it is that Michael has in him, here is the link to it.  Michael's is slightly different, but fairly close to this unit.

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

I find it fascinating that it was developed and marketed for someone who is suffering from chronic back pain.  VERY interesting!

Let's hope that results continue in the direction that they appear to be in, Michael!

Chuck

Tks. Chuck for posting the link.....
I didn't feel like being stigmatized as a  “shocker” pusher
I am already tainted as an O2 pusher......  (and very proud of it)

No need to add to the titles.....

Michael

Glad to hear it is helping, Michael!

I, too, am happy to talk to anyone interested in occipital (and supraorbital) nerve stimulator implants for chronic cluster headaches.  My device was made by Advanced Neuromodulation Systems (ANS) which is a division of St. Jude Medical.  I have researched extensively into this, and I am very happy with the results I got out of this surgery.   There is a smaller company working solely to fight cluster headache thru a slightly different stimulation device, but I'm not at liberty to really talk about it as it is still under new development, but I anxiously await updates about this other technique as well!

Michael  -I understand the desperation one feels to get to this point.  I hope it continues to have the success for you that it had for me.  I count each day  until I can get my stimulator re-implanted now that my infection is gone.

PF wishes,
Carrie :)

as I am at home with way to much time on hand
I will put a full report until now, as well as why I
am useing the OBS I am uesing...... I need to get
some more information and Pic. to have a comprehensive
summery......

Michael

61108748

Hi
First portion of the stiches / staplers have been taken out…
some what sore, but the way to recovery…. and adjusting
to being a “cyber head” remote controlled is on a very
good way….. with a very good result, still at above 80%.
and lots of optimism…..

Micahel


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

Michael, thank you so much for sharing all of this with us.   I'm so sorry things have not gone as smoothly as any of us would have hoped, but it does seem that the results are promising!!!!!!!!!!  It looks uncomfortable, but I hope well worth it.

All my best,

Laurie

“We must embrace pain and burn it as fuel for our journey.”

The permanent leads to the ONS “contacts” at the base of the skull connected to the Occipital major nerve (right and left) have been “laid” trough
the back on the right side and to the front leading to a cavity made in the belly. The permanent ONS. was put in a “pocket” in the abdomen, just about 1.5 inches right of the belly button.
Some fine adjustments have been made to provide me with 3 base programs for the day and 1 for the night, yet still not optimal settings.

The ONS is active most of the day (about 20Hrs.), in order to test the preventive effect, and it seems to give me a good result, at the moment, only one to one and a half (1 ½) attacks all day.
The persistent attack in the early morning is some what under better control with a better adjustment of the night program......

I still have some pain around the “pocket” and some swelling, as well as some discomfort due to the leads that have been pulled from the head to the ONS and the numerous scars from the stiches and staples, which had been taken out (last ones) on Monday (Nov. 10. 2008)

The last stretch of recovery is on its way, and the normal life will come back to a normal routine with less CH episodes, and a better control over the episodes.


The choice of ONS was made due to some technical advantages that the “Boston” unit possesses
the type of impulse, and the ability to program the unit on almost all levels be it intensity be it frequency
and some other factors that give me “endless” possibilities to control my head. A very comprehensive hand held control unit, a remote control for the ONS “generator”, that enables a constant control and adjustment of the pulse, reacting, and adapting to any change of the episodes characteristics, and even act to provide a better preventive scam depending on the current situation, be it stress or what ever situation .
As well as (very soon) the ability to read and evaluate some data recorded by the hand held unit
and all that with out leaving my home........ and therefore a better “map” of  the use of the ONS enabling me to attain a higher yield with less use, or better said target effectively the times the unit is on, using a targeted pre-programmed constellation and therefore reduce the need for recharging the unit to about 1.5 hours about every 2 weeks.

At the moment I have achieved an up to 83% improvement in the CH episodes, I have taken 6 episodes as a maiden, representing an average of “high noon” 8 episodes a day and 4 as the low count of episodes, there for 6 episodes as the 100% and 1 episode would be 17% or an improvement of 83%

It is, though, to early call it a successful and promising alternative, also the numbers above do point to that direction, in order to be able to recommend this procedure without a doubt, it will need more time, to rule out any adverse effects, short term, and it will need more procedures / Tests on CH'ers / Migraine rs (are being done in the EU as I am writing this).

In the past few days I have also observed that “Shadows” are not so much controllable, I cannot identify , or pin point the reason to some what the ineffectiveness, I need to “play” with the various settings and try to find an effective setting to prevent the occurrence of the shadows, but I think, the Shadows have some what different characteristics that differ from a CH episode, and therefore it might as well be that the ONS will be of lesser efficiency against shadows

Another observation is that while working, it seems that the “zoom” in the head or the “tingling” sensation have an irritable and distracting effect.
One more anecdote, when an attack does get through the preventive net, during sleep, or even at day time it is almost impossible to abort the attack depending on the ONS, it is paramount to use oxygen (O2) and / or another abortive, such as Triptans (in my case Zomig nasal), though I am still trying to find a constellation on the ONS to reduce the episodes intensity or achieve a full abort, with out the need to resort to any abortive, but Oxygen.
I cannot, and most likely will not be able to call this procedure a cure, nor will it be a total solution to this condition (CH) but it is and will be a very good tool, to reduce the suffering, be it the physical excruciating pain, be it the psychological effects, and very important a lesser (if at all) dependency on medications that bear very high adverse effects, in short and long terms, a step that could boost the quality of life.
I would not suggest or recommend at the moment, to persue this venue for all CH sufferers, be it episodic or CCH, it does need to be properly tested and validated as an effective device for helping CH.
There are some test being done at this time, but as I have no conclusive data or for that matter any relevant data I cannot make much of the tests other then acknowledge the existence of such tests.
I(still) think this procedure bears high potential for the few of the CH community in general
and in “our” little village in particular, sufferers  that are meds. resistant / sensitive or with other medical conditions that prevent them from using preventive / abortive medicine, and I am confident in suggesting to the persons concerned to look into this venue, it could be the right way for you and could provide you with a notable relief.

I do mention that it is not a trivial procedure, and it is in more then one way irreversible, and yet one can abandon the use of this venue, if the achieved results are marginal.

I am very optimistic, but at the same time very cautious, to often things seem to be
working right at the beginning, and later it is just one more try to win the battle, but
the war is still on……

Michael


I add to my post:
I have got this morning per E-mail from
SR Neuromodulation, Boston Scientific
the folowing adresses in the USA that do use the occipital Nerve stimulation (ONS)
but still open if it is also used for CH……

I do post the names, I do not know if CH is part of the program I wonder my self……..

1. P J Goadsby
Headache Group, Department of Neurology, University of California, San Francisco, San Francisco, CA, USA. peter.goadsby@ucsf.edu

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

3. Connecticut Headache Centre START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
4. Dr. Weiner in Dallas START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This information is not an official information, it is just a “link” to the institutions
that do use the Precision in ONS but open if for CH…..

Michael

Wildhaus 151108872

wildhaus wrote on Nov 15^th, 2008 at 7:01am:

I am confident in suggesting to the persons concerned to look into this venue, it could be the right way for you and could provide you with a notable relief.

Hmmmmm ... Michael are you talking to me?  LOL!

Yes, I mentioned this to my neuro, last week.  They are setting me up with an appointment to the pain clinic, here in town.  It looks like I may have to jump through some hoops, first, before I can progress very far into doing this.

I am still very interestd in doing more research into this path of battle.

Thanks for the update, Michael, and I hope you continue to improve in your battle plans, with fine tuning and all.

Chuck

Glad to read your updates, Michael.  I am glad you have found such success thus far, and I think your technical data recording is excellent.  I, myself, am scheduled for a new implantation on January 6 with the ANS Eon Mini, and, like you, have spent a good deal of time analyzing the benefits of each device, but have chosen the one recommended to me by my neurosurgeon.  To the best of my knowledge, my neurosurgeon will implant any of the 3 major devices out on the market, the ANS Eon Mini (or other ANS devices), the Medtronic RestoreULTRA, and the Boston Scientific Precision.  He did recommend which one he felt was best for me and why, and I chose to go that route.

I'm very anxious to hear how you will be optimizing the use of your nerve stimulator.  Will you have a handheld programmer device that allows you to view your used programs and settings?

I wish you the best of luck in finding the optimal programs to achieve the best pain relief possible!

Take care,
Carrie :)

in Reference to my post of today, and Carrie’s comment,
the hand held unit or better called remote control I have is the same as any one would
get that is using the device I have implanted, the only difference is that I have some more
functions that I can control, and soon I’ll be able to download the accumulated info on the remote to my lap top, so I can map the use and the obvious info such as CH episodes or shadows to the map; the different factors used against the CH episodes, so I can see what constellation on the Stimulator (Marta, my wife calls it Stimi) is providing me with the most efficient relief, and what constellation yields the highest preventive effect.

At the moment I think that, as CH has very different orientations, no situation is the same as the last, other than time, and the excruciating pain characteristics’, it will be very difficult to find a ‘one for all’ programm, or for that matter 5 base programs. But it is way to early to speculate, it is a mountain of data to process and make sense of, so it will take some time, and “playing” to find some answers to very many open questions.

I will try and find some answers for my self, and try and provide honest and non subjective information along the process of adjusting to living with Stimi and I do hope that some of our fellow sufferers will try and go this test period venue….. the more try the more info we have and there for better base for educated choice, and it is not about what device and manufacturer, its about the idea of nerve block electronically.
Carrie, I wish you all the luck this time around, you know what you are going into, and
what benefits you have gotten, and will get soon again.

Micahel

ClusterChuck wrote on Nov 15^th, 2008 at 7:22am:

wildhaus wrote on Nov 15th, 2008 at 7:01am: I am confident in suggesting to the persons concerned to look into this venue, it could be the right way for you and could provide you with a notable relief. [size=16]Hmmmmm ... Michael are you talking to me?

talking to you? who are you?

Yes chuck, but not only to you, we do have some fellow sufferers
that are meds resistant / sensitive or do have medical condition that
prevents them from using main stream medication (preventive or abortive)
and I believe it could be a new possibility, to look closer, and to talk it over
with a neurologist and a neurosurgeon, and get an input considering the
situation one is in be it meds sensitivity / resistant or medical condition

Micahel

Thanks, Michael, for your information.  Very interesting regarding your remote and the ability you will have to track your program use, and so on.  I think that's wonderful!!  I have charts that I keep to track my headaches and also the stim programs I use, but nothing as exact as what you are proposing.  I'm curious about it because it would be really something I'd be interested in doing myself, if it is possible with the ANS system!  I've not yet asked my ANS representative, who has been incredibly helpful with so many things related to the device.  The reason I asked about the handheld programming device is because I've seen him work with that and be able to "see" what programs I am using, and how frequently.  I'd love to find some way to be able to see these things myself, without requiring the handheld programming device!

Take care,
Carrie :)

Carrie, do ask the ANS rep. most likely he has the programs the same or even better then my.
As most (if not all) of the stimulators have been developed for Spaniel pain and some other disorders,
and not for CCH or such, the use of Stimulators on CCH is a new field that needs to be properly
explored, documented, and there for the manufacturers should provide you with tools to help you
map and document the effectiveness of the stimulator, its to there benefit, and to all of us, it will
make it simpler for the sufferers that will choose this venue at a later time to have the information
on hand.
Carrie, in reference to your post on the MB, I wish you, again, all the luck this time around, it is so
nice to have a tool that provides hope, and more, a higher quality of life with less pain, you have
been in the (somewhat) PF zone, go for it and try again, it can be a jolty journey, but at the end
it is as if the light sheins just a little bit brighter……….

Michael

In the past few days I have noted a few new experiences when using the ONS,
the one that is some what disturbing for me: it seems that on an onset of an CH episode,
if the timing and set up of the ONS are not adjusted correctly, or the intensity increased on time,
speculating time, (will it turn up to be an CH episode?  or “just” one more shadow) the reaction time
is very limited and mostly missed…… When “cranking up” the ONS to the CH “episode mode”, it
seemed to intensify, or better said sharpen the “sensation” of the episode…. but I am not confident
I have this observation correctly “noted” or was it just simply inner rage for missing the signs or
bluntly ignoring the signs.

I have also observed that with lower intensity I achieve a greater preventive effect…also for “shadows”
again this is rather speculative as I‘ve been trying this constellation (low impulse) just for the past 2 days….

I did go at the beginning of the week through a rather rougher time, a CH episode in the morning and one more
in the late evening, I cannot place the occurrence of the episodes, unless I can attribute the change to
a light cold I am having, some thing that in the past seemed to intensify (in No. and intensity) of the
CH episodes.

I do seem to find a fine balance, a less distracting sensation to the pulse of the ONS during concentration
periods, with out diminishing the preventive effect.

During CH episode, I still do not have a set up that will abort the episode, it seems that I have a good
set of constellations that “take” the edge of the episode in combination with O2 at 20 Lt./min.
I still do avoid the use of Meds, be it preventive or abortive, had to use Zomig nasal only 2 times
since the ONS was “put into me”.

I do seem to have a rather prolonged recovery time (in my eyes) I still feel some what sore, and hurting
at times at the abdomen where the ONS Generator was implanted, and very limited in physical activities…
as well as working…. some thing I dislike, and makes me feel useless, and unproductive…. a feeling that
dose not add a positive aspect to the recovery period…….

Michael

201108977

In the past 3 days I have been practically pain free, just some minor Headaches due to the cold that by now is not any more a minor cold, it’s an annoying cold, but still no CH episodes, I cant say, is it the cold that effects the CH episodes, or is it the settings of the ONS (15 Volt @ Left 0.2Miliamp right 0.9Miliamp.) that have the episodes subside (at the moment), The ONS is operating just about 24hrs. a day at the above settings, only during driving I do put the ONS off, as there is no info about the risks during driving, so as a precaution it is recommended to turn the unit off . So all together I have enjoyed just about 4 day with no CH episodes.

The battery is still just over ¾ its capacity, after a week of use and the loading time is less than 60min. for the week, As to the battery (AAA) of the remote control, I had to exchange the set (3 bat.) after 3 weeks of intensive use, but I would speculate that with very little need to “play” with the remote control I will need to exchange the current set of batteries only after about 6 weeks or more.

At the moment I still use Verapamill at a base level of 80 mg/day, and will reuse the level down to 40 mg/day mid December and then will use the verapamill only until January, at which time I will drop it totally, as at the low level of 40 mg/day it has no effect what so ever on CH.

The other medications (hidrocort), I will have to continue the intake of 15 mg/day for just over 7 more month (?), this is to help the adrenal gland to recover from the “abuse” using the GON, Suboccipital injection (see link START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) and some calcium combination to support the heeling process of (from) the Osteoporosis that was also an “added” effect of the GON. All other preventive medications are off!

AS to abortive I still keep an “arsenal” of Zomig Nasal and Novalgin Drops, but avoid using it. O2 is the only method I will try and use if a CH episode accures.

As it seems for the moment (and very carefully stated) I am on the right track, substantial PF time and reduction from the dependency of medications’.

Michael

2311081012

Awesome news Michael. Here's hoping you've turned a corner you won't be looking back on anytime soon. Sleep well brudder!

Guiseppi

I will return to the hospital for the first time after the surgery, not that I am keen to see any of the team
that helps me at the medical centre in St.-Gallen (Switzerland), (KSSG), I have to be honest I have had more
then I had ever “planed” to be under the “hand” of the (very competent) Dr’s, so I do not feel any desire or need to see them! but I have to, I need to be cleared to work again, so Ill be nice / good “boy”, and I might “get lucky”
and will go again  to work, I need to return to my normal routine! I most likely will be a bit nicer / friendlier person……..

I Visit the hospital also for a routine check-up, adjustments to the ONS, down-loading the info from the remote control of the ONS and add missing / further info for the ONS case study.
Micahel

So the visit to the hospital is past me, unfortunately it is not the last one.
The data of the ONS is being evaluated, and some settings have been discussed and I will need to try and find better set up for on set CH episodes, and better set up for shadows, I have some more features that I can play with, but I don’t think it’s the features, its more doing things right at right time, some thing that seems I lack the discipline, or I am just being naïve, and taking the time when a CH episode is starting to build up, and do the necessary things to abort the episode, be it higher up the various signals to “abort mode” or just simply go to the O2, but that is me……..
The visit has also reviled the need to potion the leads that are going along the back (parallel to the spein) as it seems they are somewhat exposed and are causing some irritation, and the need to place the ONS “generator” in the abdomen some what better to avoid the discomfort it is giving me, and at times painful situations the procedure will take place on Dec, 17th, the delay is due to me hoping the situation will stabilize and things will get better, and there for save my self another round on the Surgical table, being optimistic.
But all in all, it seems very positive, and the successes is above our set targets, which were set at about 50-75% relive and the current rate is at just about 94%, so I should not complain……

Michael

2511081075

Oh Michael - 94%?  That's amazing!

Hoping you can get it straightened out and won't need to go for another round of surgery.

But overall, what fabulous news!  Thank you so much for sharing so much and documenting all.

Laurie

It is some time now since I have updated my thread about the ONS.
It is, by now just over a month, and as it seems I still suffer from the surgical procedure, sort of sore feeling at the abdominal area, the area the ONS “generator” is placed, as well as in the back, the “cables” cause me some discomfort, all of the above will be “taken care off” in the upcoming surgery (Dec. 19.2008).
The ONS is still giving me very good relief from the daily pain, at the rate of 79-80%, and a better control over the “shadows”.
The preventive setting seems to do the “job”, at a very low setting, during the night I am at over 90% pain free, during the day it seems to work in a lesser efficiency (the preventive set up), I have to go to CH episode mode every day, almost, at about 10:00AM to abort the CH episode, a situation that takes about 10-15 min. with at times the help of O2.
I have noticed that the preventive set up level needs to be adjusted upwards, every few days, or change the frequency, or the pulse rate, in order to achieve the preventive effect, this development makes me wonder, and I have notified my treating Dr, about it, as I interpret this, the nerve seems to accustom to the pulse and the level needs to be adjusted, it dose not need to be a higher level just a deferent set up, and still this is a worrisome development, a development that needs to be looked closer, in order to develop a flexible pulse / set up.
One more puzzling development is the need to change frequently the abortive set up, the pain seems to be aborted, and after a minute or so the pain “jumps” over the hurdle set, and an acute need to higher the levels of the set up, this situation, about 5% of the CH episodes, seems to develop a life of its own, and are equivalent to the CH episodes that, prior to the surgery, have been episodes that can not be controlled nor by O2 or Zomig Nasal (in my case) or any other abortive method I had in use.
I am still convinced that the ONS was the right decision for me! I do get a high rate of relief, and I think all the “little” set backs as described above will be solved with time, and corrected. The ability to get a full night sleep, with out the need for medications, be it abortive or preventive, and a daily routine, work, as well as family life, and social life with out the need for any preventive meds. and only 4 Zomigs Nasal in about 4 weeks, has improved my life, as well as my health. I do still need the O2 as described above for the non controllable CH episodes.
I do need still to take the medication to fight the adverse effects of the nerve block with corticoids, but it is for a limited time….

Michael

512081163

Michael, sadly, the beast is a clever one.  But I'm sure you're smarter and you'll figure out the right set up to beat him back!

I'll be thinking of you on the 19th.

Laurie

So, If every thing is all right, I have my cold over, and nothing ells hits me, the last surgical procedure will take place on the 19th of December , I will join the “forces” of the hospitalized persons on the 18th in the late afternoon, straight from work…. during the procedure, the leads to the Occipital nerve will be adjusted, in the upper back, to avoid the discomfort I have from it now, and better strain / traction relief, in order to avoid the stress on the leads, or the muscle it is connected to. the “generator” will get a better placing, that is the “pocket” will be adjusted to avoid stress on the abdomen when bending, or during sports / skiing. The procedure should not take to much time, so will “run off” the hospital on Sunday  21st of Dec. or latest 22nd of Dec. and will see…. but I am happy I do get good relief from my CH episodes, and that the ONS “experience” is getting to an end.
Michael

0912081212

Michael,

I just had my first visit to the Pain Management Center (the first step to me getting the same thing) and they were not too helpful.  They were trying to tell me that due to the pain being located in the front of the head, the Occipital nerve placement will not do anything positive for them.  They said that I needed to get two Sub-Orbital leads added to the system in order for it to work.  They are two very fine leads that travel around the head, just under the skin, and then are placed just above the eyebrows.

According to them, these are used in conjunction with the occipital nerve leads.  They recommended that I go see a doctor down in Fayettevill, NC (about a two hour drive for me) who used to practice out at Duke University.

I am a bit nervous of doing the occipital process, never mind adding two more leads.  Besides, I can't recall ever hearing about this procedure.

Does anyone know of positive (or even negative) results from the sub-orbital leads?

Chuck

ClusterChuck wrote on Dec 12^th, 2008 at 1:41am:

Michael, I am a bit nervous of doing the occipital process, never mind adding two more leads.  Besides, I can't recall ever hearing about this procedure. Does anyone know of positive (or even negative) results from the sub-orbital leads? Chuck

Quote:

I am a bit nervous of doing the occipital process

You dont have to, you see I am still going......


Quote:

results from the sub-orbital leads?

I ahve just called the hospital and asked for Info. as well as a¨call to Bosten....

will let you know..... as well will post it, if I can....

Michael

And again, tomorrow to the hospital, for another round, to adjust the ONS, the leads to the head, and corrections on the abdominal “pocket”…… so I will have it better after the corrections….
I didn’t think I should trade less CH episodes with discomfort due to the ONS, and the neuro-surgeon was the same opinion, wonders do happened…. Dr’s do agree with “normal human being”….. (just being sarcastic, if you didn’t notice) But he really is a very understanding and helpful surgeon…..
Michael

wildhaus wrote on Dec 17^th, 2008 at 2:20pm:

And again, tomorrow to the hospital, for another round, to adjust the ONS, the leads to the head, and corrections on the abdominal “pocket”…… so I will have it better after the corrections….

Yes, Michael, I have been watching the calendar, to know when you are due for another round, under the knife.  GOOD LUCK tomorrow!  We will be thinking of you!


wildhaus wrote on Dec 17^th, 2008 at 2:20pm:

Dr’s do agree with “normal human being”…..

Yes, I have heard that they do listen to "normal" people  ...  But why are they listening to you?  I know you are FAR from "normal" ... LOL!!!

Chuck

I got a phonecall from Professor emeritus Ottar Sjaastad here if i would be interrested in this.From what i could understand from Ottar and from Michael have told us its the same thing.It is about to start in the spring here at the competencesenter for headaches at St,Olavs hospital in Trondheim.I have not given him an answer yet bc i am not sure what to do,and will use some time to think about it

Svenn

Am in the hospital..... boring as can be..... wonder what  will be.......
and the Vampire (blood drawing Nurse) is looking for me......
so I better start to run......

I need to go to the Maldives.... for some sun....  fun...... and some vacation....


Michael

ClusterChuck wrote on Dec 17^th, 2008 at 4:45pm:

I know you are FAR from "normal" ... LOL!!! Chuck

Chuck,
Do I remained you of your faults? and on a public board.....

but on the other hand did you ever see a "normal" Clusterhead....... other then my self.......

Michael

The Mad Viking wrote on Dec 17^th, 2008 at 4:51pm:

.I have not given him an answer yet bc i am not sure what to do,and will use some time to think about it Svenn

To give an answer is not to do it yet..... and to think about it, is more then OK....
Svenn the way I know you, I think you should look into it and listen to the ppl. in Trondheim, it might give you some answers, that will help you in your "thinking about it"

I cant say it is the right thing for you......  but do look into it, it just might help you the way it helped me......

Michael

Michael,

As always you know I wish you the best of luck.

Chuck,

My first implant was bilateral occipital with right supraorbital.  I only had one of the supraorbital leads placed, on the side with the worst CH's for me, and it seemed to help tremendously.  It is a bit of an older school of thought that the occipital nerve stimulator will not help with frontally located headaches, I'm afraid.  About 4 years ago, that's what I was told for the reason the procedure would not really help me.  Now there are 2 studies (One in Lancet and one in Lancet Neurology) who prove this to be false, that the occipital leads do indeed help people with CH, with pain located primarily in the front of their head.

BUT, having said that, there is a possibility that the supraorbital leads do add a benefit.  I, for one, believe this to be the case.  Most of the battery packs cannot sustain 4 leads: 2 occipital, 2 supraorbital.  Several battery packs CAN sustain 3 leads, which would allow for 2 occipital and 1 supraorbital on the side of your choice.  Additionally, they don't have to place the occipital leads bilaterally, but I feel that my CH would just switch sides and become worse on the left side if I didn't have the bilateral occipital leads.  I believe one of our own who had the ONSI w/supraorbital actually recently got bilateral occipital and bilateral supraorbital with 2 battery packs to allow for all 4 leads.

If you want to know more, I'd be happy to get any info you need!

Michael - sorry to jump your thread!  Just don't see the need to reinvent the wheel when a few of us have already gone through the supraorbital leads along with the occipital ones. :)

Hugz,
Carrie :)

Lizzie2 wrote on Dec 18^th, 2008 at 3:06pm:

Michael - sorry to jump your thread!  Just don't see the need to reinvent the wheel when a few of us have already gone through the supraorbital leads along with the occipital ones. :) Hugz, Carrie :)

In no way you have "jumped " my thread..... It is not my thread, it is a thread for all of us, and any input is important.... the more we know the more info. we have, and the more knowhow we collect, the benefit for all is bigger.... and might help some more of us all.....

Michael

The surgery went as planed... I believe it is this time better, but we will have to see,
time is the judge of this things, but as an over all , it is and stays (?) a successful adventure,
I have  still an 83% success rate, and that is more then I would have asked for.... and am very grateful
for the gift I was given! Not only less CH episodes, also almost no meds to take, and soon when the
secondary adrenal insufficiency is again normal I will be meds free.....  I just hope I am not hoping to much, and being overly excited, or overly optimistic, and the the harsh realty of CH will find a way
to get back at me.....

Michael


2012081371

wildhaus wrote on Dec 20^th, 2008 at 3:15pm:

The surgery went as planed... I believe it is this time better

Great news, Michael!


wildhaus wrote on Dec 20^th, 2008 at 3:15pm:

I have  still an 83% success rate,

WOOHOO!!!!  That is SO good to hear!


wildhaus wrote on Dec 20^th, 2008 at 3:15pm:

I will be meds free.....

Are you saying that you will not have to take anti-rejections meds?  I thought you would have to take those for the rest of your life.  Or is that just when you get an organ transplant?

Chuck

I am done with the Hospital for now...... going home.....
so am very very happy........  even if  I still have some
pain, its better at home then staying at the hospital.....

Michael

I am back home, and kicking…. some what sore, and some pain, but all in all happy to be home!
I am adding some images of the surgical procedure, the implantation of the probes into my head….
as well as an X-ray of the probes…. in my head.
(I am using links and not images, the images are very descriptive)

The first image is of the marking on the top of the neck / base of the skull

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

The next image is the base of the skull opened and the insurgent of the probes (right) into the skull base.

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

next 2 images, both probes are inserted, in the second image the gloved hand is over the head.

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

X-Ray image of the position of the probes in my head.

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

“anchoring” the probes at the base of the skull.

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

next 3 Images are leading the “cables” to the lower back

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

I believe this will give you some better understanding of the process I have been going trough,
I do not try to convince or promote this procedure! I have promised to let you all walk with me trough
this journey and report as honestly and objectively as I can, with the hope that it will help me at the end
of the road, and might be of help for some fellow sufferers.
I would like to stress that this procedure is not trivial and should be considered only, as a last alternative,
IT IS a reversible procedure, but as any other surgical procedure, it is not without risk! and as in a post from Bob Johnson,
Neurostimulation for Chronic-brief overview, and I quote „ONS has the advantage of being harmless and reversible. At this stage, it should be the preferred first-line invasive therapy for iCCH.”
I do not know if I am at the end of the road, and to be honest the 83% effectiveness I enjoy now are
an indication, but it is not yet a result, it is a trend, after about a year I will be able to say I have a tool
I can fight the malady, in a comprehensive and efficient way, BUT IT IS NOT A CURE! I still have CH
and I still fight, I just have a tool to improve the quality of life, and one step closer to win the war (?)

Michael


We cannot change the cards we are dealt, just how we play the hand


2112081410

Michael,

Yikes!  The photos of your surgery give a whole new meaning to the lengths some cluster headache sufferers must go in order to regain a reasonable quality of life.  Thank you for sharing them with us and for the very sound advice.

Take care and get some rest,

V/R, Batch

After seeing those pic's, I know why I keep putting off my C6-7 fusion...

Thanks for posting them Michael,

Roland. ;)

Michael, I'm glad everything went well and that you're home and doing well!

Haven't gotten the courage up yet to look at the pics during surgery.

Hope that 83% number keeps moving up.

PFDAN,

Laurie

Michael, it was good talking to you, earlier.  Glad you are now home.  At least now you can sleep in your own bed, and recuperate in familiar surroundings.

Thanks you for this whole thread.  It is a very informative journey, that you have documented EXTREMELY well.  The pictures are great too.

I wish you continued success, and I will talk to you again, soon.

Chuck

Michael I'm delighted to know that you are home from the hospital and on your way to recovery... Thank you for the fascinating pictorial narrative.

As difficult as it will be....GET SOME REST!!!!!

... and Happy Chanukah to you and your family.


with warm regards,
Tony

An anecdote….. during my stay at the hospital - during the pre Op (pre-surgical) I got a CH-episode, must be the situation that triggered it, I don’t know, but the reaction of the team was very “amusing” they simply didn’t know what do make out of it……  it seemed to me as they were parallelized, and helpless, only after I told them to give me O2 (which was ready for me) and run to get a Zomig out of my room, and the appearance of the head anaesthesiologist, things got calmed, later I was asked by some of the team if that was CH-episode, and that they did know about the condition, and my personal condition, but have never been aware to the acute extremity, and the pain one must be suffering during a CH-episode, 2 of the “young” Dr’s said that the way my right eye “looked” is something you can not understand unless you see it “live”, the level of pain the face and the eye manifest, At the pre-op for the last surgical procedure it happened aging….. and seemed, to be in shock again…..  but way better reaction….. just send me into deep sleep……
Michael

Stitches are out.... doing much better.... still some irritation from the
surgery....  head.... a higher frequency of CH episodes, so success rate
is at about 75% at the moment, have no explanation, but looking for solutions....
all that did not stop me from skiing yesterday, some thing that have caused some
pain at the abdominal “pocket”, oh-well seems that one can not have it all......

Michael

I hope your doing well Michael.  What is CB?

The term "CB" stands for clusterbuster (for me), and I belive you can find very good info about it on Bobw’s (Pinkfloyd) website:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
I my self do not use, nor do I promote the use of this method due to the legal status, but I do think it is a very effective method, and highly potential alternative, just on the wrong end of the legal “band”.

Michael

At the moment I experience higher pain and higher CH episodes, per day 3 episodes of about 7Kp, we do not know why, it sets the results rate at 50% at the moment.
The most likely reason will be, due to my way to early, returning to “normal way of life” that is extensive skiing which most likely has shifted the positioning of the “sensors” in the head, I have started to do sports – skiing just under a week past the last surgical procedure, oh well, but it is my way of cooping with recovery.... even if it is in a way contra productive.... as it seems, it is a speculation and has to be yet confirmed......

I will have some tests and Imaging done soon to try and see what is going wrong! or try an identify the cause of the reduction in efficiency of the ONS.
We do believe that the “set back” can be fixed, and achieve higher yield, back to 80% and higher, just needs better self control, and less of “arrogance” on my behalf.......  be more self controlled....... and less reckless.....
I do go on with my normal life schedule, and sports, at the moment skiing, and avoid any medication.... only the use of O2 to abort the CH episodes and with the exception of a Zomig Nasal about once a week, as well as  the on going treatment for Secondary Adrenal Insufficiency, which has no connection (we believe) to the CH episodes.......

Michael

Wishing you a ton more PF times.

good luck

I haven’t posted for some time now about my journey with the ONS (occipital nerve block), the improvement rate is at about 80-83% (1 episode a day with ONS  /  average of 6 episodes before with minimal or without preventive medication) I have days without any episodes at all (shadows or attacks) and (rarely) 2 episodes a day.

I still experience some skin sensitivity around the scar sites be it at skull base or at the lower abdomen at the “generator / Battery” position, as well as some irritation (nerving) due to “Stimulation varies with head position” – a situation that demands adjustment of the pulse, depending on the current activity, when using the ONS as preventive, about 22 hours a day.

I have to mention that it takes some time to get accustomed to all the variations, feel in the head, and the need for disciplined reaction to the situations, increase intensity at onset of an episode, and carry at all times the controller for the ONS, I still forget at times to carry it with me.....

I am still very carful with suggesting, or recommending to choose this venue, I believe it has a big potential, but it is still not fully ripe, from reports that I have obtained and have gotten from fellow CH’ers it needs still more research and development, to be used as a comprehensive method for CCH (Chronicle CH), although I would urge CCH sufferers that most or all the common methods have failed or have not gotten satisfactory relive to look deeper into this venue, it has a comprehensive potential.

The ONS is a good method for me in combination with O2, and very rarely I have to resort to Zomig Nasal 50mg
mostly when on the road without O2, and in stress situations.

Michael

2801091814

I am still having a solid result with the ONS, the few CH episodes are mostly night episodes, and very rare CH episodes during day time, mostly due to poor reaction and low discipline.
The night CH episodes, about every 4-5 days, at a level of 6-7Kp, the simplified explanation, the night set up (program) is a compromise between comfort (tolerability)  and efficiency, a very difficult fine line which most of the time fulfils its purpose, preventive for night time CH episodes.
Day time CH episodes, about every 8-10 days, are the ones I have the most difficult “time” with, due to my poor judgment and low discipline, the CH episode flares to and beyond control, adding to it is the situation at work, stress at times or just the simple the wish of “pleas don’t see me in my agony”, and the (silly) hope that the on setting CH episode is just a shadow, and it will pass soon, although I am aware that it is a full scale CH episode, as I say poor judgment, and still very normal.... for me..... the day time CH episode then gets out of control and the day is just an on going CH episodes, up to about 4 a day (and more) which I need to at time “kill” with Zomig Nasal, or in most cases with O2 (soon to be a demand valve) one thing that works for me almost every time!
Mid month (Feb. 25, 2009) I will most likely undergo another surgical procedure, to “fix” and alien the sensors (line) better over the Occipital Nerve, this in order to try and achieve a better preventive effect from the ONS, Try to provide a higher yield with low stimulation, and with the better enlightenment avoid (?) or reduce (?) the occurrence of the night time CH episodes, all this depends upon successful (extensive) imaging of the ONS and the brain (explicit the Occipital nerve) with the hope to get a good imaging of the ONS and the nerve in deferent positions and situations, in order to try and “map” the highest efficient position of the ONS to the nerve (Occipital Nerve)in the deferent positions, I am positive (but not totally convinced) that this imaging will help understand better the efficient functioning of the ONS, and yet hope for good results.
I will try and have some of the images posted, with the proper explanation soon after the hospitalization......

Micahel


0802091890

And again a trip to the neurosurgical department at KSSG (the regional medical centre St. Gallen), and probably once more adjusting the leads and the ONS “contacts” over the Occipital nerve, with the idea of achieving a grater effect, and there for a higher yield, mostly at night, as the ONS is set on night programming, preventive program.
As the night program is a fine balance between comfort or better said tolerance to the signal, to provide a peaceful sleep pattern, and an effective preventive pattern, the proper positioning of the leads and the ONS “contacts” “over” the nerve (Occipital Nerve) with the hope that a better alighenment will provide me with a better control over the night CH episode (about 4 times a week) at 23:00 (11PM) and with this (possibly) improvement the ONS will provide me with about 85-87% improvement, and I will probably not be satisfied.... I believe that with proper placement, correct use, and mostly on my end, a higher sense of discipline adjusting the ONS at the “right time” I can get to over 87% .

I am positive that this alternative (Occipital Nerve Stimulation) is a very comprehensive alternative! but not for “every one”, only for the extreme cases, the ONS needs still to be researched and developed to be used as an alternative for “every one”, it is a radical and invasive procedure, (it is reversible), it bears some risks, as in any invasive procedure, but I would do it again.... if asked, and I recommend to all the extreme cases with CCH to look into this alternative, to explore it, and to seek guide’s by a neurosurgeon, it just might be a good thing for some, an alternative to provide some with a comprehensive treatment.

Michael

2302091995

The trip to the neurosurgical department at KSSG ended last evening without crying the surgical procedure today!  (in someway relived)
The extensive imaging reviled some “diving” of the probes and “sensors” - “contacts” (about 0.5 cm ≈ 0.2 inch), that could have a some effect on the effectiveness of the ONS, but the risks of another surgical procedure, the normal risks and the added situation due to the adrenal gland insufficiency in my case outweigh the potential
gain we had hoped to achieve from the correction, and therefore the surgical procedure was put off for a later date, and I would prefer to think that its off the books...... but time and the neurosurgeon will have the say, as well as the endocrinologist and neurologist.

I add 2 images taken yesterday (X-Rays):

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

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

The tenor was, I should be happy with the excellent results achieved, and except that things can not be perfect......  I am happy with the results.... but I am convinced it can yield (squeeze) some more....... out of the ONS......

Michael


2502092037

This post is to give you (some) insight of the standard settings of the ONS during day time - preventive mode and Acute setup.

the link below, ONS hand held unit (remote control) in normal day time premier (base) display.

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

Preventive mode, a mode that is compromise set up between the highest preventive effect, and a comfortable sensation and concentrating ability.

the link below, ONS hand held unit (remote control) in preventive day time settings 3 (level, width, rate) displays of the deferent set ups possibilities

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

Setup during acute mode at an on set of a CH episode, at a level (kip) 4 the CH episode will go to level (kip) 7-8 as the pain level increases in intensity exponentially with in 2 min. from level (kip) 4.

the link below, ONS hand held unit (remote control) in acute, abortive settings 3 (level, width, rate) displays of the deferent setups possibilities


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

I have caught this episode to late due to my poor judgment and low discipline – hoping the episode will “just” turn to be a strong shadow, day time episodes, about once a week (“only”) at the moment.....
aborting the CH episode in combination with O2 with- in about 3-4 min. with out O2 it would need the same time, just with longer “relaxing” time, I am more “relaxed” when using O2, don’t know why......


Michael

2802092080

The World Institute of Pain (WIP) will hold its 5th World Congress in New York, March 13-16, 2009. This Pain congress offers physicians an multi-disciplinary look at pain syndromes and their management.

During this event also CH will be discussed, and the on going developments and research Applications of Neurostimulation, my case will part of the presentation.

SATURDAY, MARCH 14, 2009 if I have the info correctly…..

Link to the timetable:

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

Michael

Hi Michael,
I hope you are doing well.

I have been following your journey for some time, including your own site. Very interesting stuff...you are a brave one, and I applaud you on fighting for your own relief.

I have a close friend that has a benign brain tumour, and has chronic head pain...done everything from all the regular CH meds to Botox to morphine addiction and back...the docs had said there is nothing for her, but recently one suggested ONS and it has been written up recently in a Canadian Chronic pain sufferers publication... I have made her aware of your site and successes and disappointments and have printed of some of your stuff for her... it is a big decision for her, she is alone and one daughter at a distance... but with no other alternative she finds herself considering doing ONS ...the Docs are saying only a slight chance of any success and everything hinges on her tumour growth.  Thoughts?



Paul

Michael:

I want to thank you for making this information available.  I have been accepted into an occipital stimulator study for a different headache condition and reading these posts has helped me put the procedure in perspective.  I have a month to go before I even find out if I am eligible for a stimulator implant, but it's a little less scary after reading these posts.  

I hope you have continued success with your implant. :)

Emily

2 weeks ago I have been for a visit to the neurosurgical department at the medical center in St.-Gallen Switzerland (KSSG), to try and adjust the stimulator, or better said to program the stimulator with the experience accumulated
since the initial programming (November 2008).

I have had (prior to my last visit at the hospital) a notable decrees in the effectiveness of the stimulation, the night CH episodes are daily, up to 3 CH episodes a night and about 1 day time every 3 days, and 1 CH episode every 3 days, I used to be at a rate of 1 CH episode every 3-4 days until about 4-5 weeks ago.
It was an improvement to my situation of about 85% from 5-8 CH episodes a day (av. 0f 6 a day) now I am at 50% !!! not that I complain, it is just puzzling, and more (for me) annoying!

The new programming didn’t provide me with the hoped improvement!

For the moment I (and my Dr.’s) do not know what the reason for this notable change is, and it is rather semantic.... I have to live with it and do what I always do,
work, and enjoy life, and “hug” my O2 tank when I need it......

Will be at the hospital next week, and then we will start to make sense of the new
situation, and find a way to improve the effeteness of the stimulator.....
as well as do the on-going endocrinological tests and treatments, only 4 more to go.....

Michael

0205092828

Visit to the medical centre in St.-Gallen (Switzerland) is past me.....
will have some of the results tonight, but some will take a few days to analyse.....

As for the procedure, didn’t go all to well, I had a massive CH episode during the testing,
and some what panicked (how stupid of me), and took all the probes that I was hooked to of me, something that was very dumb, but it was to late, I had taken it off, so we have only some partial results about pH levels O2 saturation and some other data.
The CH episode was not only violent, I could not get it under control with O2 or the stimulator (stimulator was off since Midnight), the O2 unit that was ready for me was a wrong set-up (only up to 10lt/min) with the wrong mask....... until the right unit had come, I was in way to much pain, anger and agony, to do things the right way, and lost totally the control of the situation, and panicked even more.... the next thing I did was to “hit” on a Zomig, and with that the test or what was left of it was out of the window....... and Marta’s (my wife) voice over the telephone, I called her, had helped me to get my self under control, and relax..... a simple “remedy” that works so often and so good for me......
I hate my self for getting so out of control, but with all the stuff looking at me so pitiful and not totally knowing what to do, and the wrong equipment just didn’t add to the situation......

Oh well some blood tests (about 120 min, Should have been over 5 hours.) are in..... but the CH episode and past episode data are simply not in......    I handled things wrong.....  and we will have to repeat all of it in 4 month......

the extensive pre test values.... (testosterone and cortisone) are (I Hope) in, will know tonight
Wonder what it will be.....

The Bonviva (Osteoporoses Treatment), only one more time to go, and then (we believe) all the adverse reactions  to the Occipital nerve block are corrected, and the adrenal gland is in good shape..... again!

Michael


0605092896

Michael,

Sorry you had such a rough time during the tests at St.-Gallen.  I know you're breaking ground with a lot of these tests and wanted to make sure you collected as much data as possible.

Don't be too hard on yourself...  but do start a check list...

There have been times in my life when what I thought were carefully planned evolutions went out of control shortly after they started and turned to crap with astonishing speed resulting in far from expected results...  

I was fortunate to have someone more experienced around to view the the aftermath the first couple times this happened and they asked the simple but pointed question...  "Did you learn anything?" and then follow up with the time tested adage...  "P7" or "P⁷" also better known as "Proper Prior Planning Prevents Piss Poor Performance."

I'll bet you pre-flight the oxygen therapy equipment before you try the next round of tests...

Hang in there my friend.

V/R, Batch

The circle of the ONB (Occipital nerve Block), see posts:

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

and

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

Is closed!

The adverse reaction I have developed to the mixture containing a long acting salt of betamethasone (dipropionate) a rapid acting salt of betamethasone mixed with xylocaine (Verumgroup) and Lidocain

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


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

(the way I was administered)

and due to it, developing a “shut down” of the adrenal gland, as well as worrisome signs of developing diabetes, advanced sign of Osteoporoses and signs of disfunction of the Kidney.


After evaluating the results of the blood tests done on Wednesday, all the adrenal gland, Kidney and some (minor) Endocrinological problems, all have been “fixed”!!! and as it seems, no lasting damages are on hand!!
I will not need any more medications to support and repair the deficiencies I have developed due to the ONB, I will be for one more year under observation, to guaranty a full and lasting recovery.....

I would like to stress that the GON is a very comprehensive alternative for CCH (Chronic Cluster headaches) it was me that has developed a strong reaction to the medicine, due to my intolerance to one of the components in the Diprophose.


Michael

0905092965

I have in the past week or so lost another 20% of the effectiveness (I am now at 30% and less) using the stimulator that is about 5 CH episodes and more a day (day time and night time), I have no indication or plausible reason for the decrees in the effectiveness,
the Neurosurgeons as well as the manufacturer will try, with me to find out why......

it is a test unit and from the start of this journey I know that there will be set backs,
and that it could be a rocky road; well it is now that the road is very rocky.......

I do feel I am back to square one...... and I hate it....


Michael


0905092989

Do surgeons mentioned that perhaps body got used to the 'supression' on the occipital nerves and found 'bypass' to let neurons still to front of the face? Not sure about the idea behind this system, but it is vital for us all if it helps, I am sad it loses its work over time, actually I am fucking mad, because I want to see one day solution to this organism's fucking defect.

Sorry for the language but I carefuly follow your topic and I had really hopes up.

I am working nights (a total of 10 nights), by it self already very stressful for me, and very hard…..
I am not used to it…… and my “Bio clock” is all the way messed up…..

The night CH episodes have shifted to day time, about one and half hours
after falling asleep, and then every 2 hours, in total 3 CH episodes a “night”
or better said day time sleeping! Prolonging the “trying” to sleep at day time
and leaving me some what, not totally fit……


The night time – working time is mainly pain free and the ONS is running high
to prevent any occurrence of CH episodes or even “shadows”……

For the Neuro this bit of info is very important, it is as going into deep sleep
dose have traceable connection and “digitally” reproducible….. I have not worked
over the week end, and got to sleep during night time, CH episodes had occurred
during night time…… and the went to work night again and the situation repeated
it self, just during the day (day time sleeping).

A text book situation…..

Not that it can help me much, just validate once more that I suffer from CH,
something I still refuse to except…….  yes I still live in denial!!

The total Nr. of CH episodes per day is back to 3-4 mainly “night time” and the ONS
is giving me an acceptable performance….. back to just over 50% success rate….

Michael


1905093106

Michael, I am so sorry for all the ups and downs, but I thank you greatly for the updates.  I am torn between showing Gary the most recent updates and not showing him them.  He isn't expecting much anyway, I guess, but he has decided to go ahead with the surgery.  He still suffers  a minimum of 5 hits a day, as many as 11, though the average is still 7.  They've gotten longer, and he is still in pain 24 hours a day.  I wonder what will happen with that?

Anyway, didn't mean to co-opt your thread.  I just felt a great deal of appreciation for your sharing your journey with us, and wanted to let you know that.

I hope you are able continue to adjust things with the result of seeing continued improvement.  

Laurie

I had my ups and downs, I had times when I was thinking this
ONS was just a waste of time….. but when I look at the statistics
I do have in the over all a significant improvement…….
in numbers, I used to have up to 8 episodes a day…. with an average of
6 episodes a day, and now I am on an average of 2.5 a day……
and that is (for me) a blessing.

Most important is; I am practically meds free, preventive meds.
And try to avoid the use of abortive meds. namely for me Zomig Nasal.

I do use during an episode O2 at about 25 Lt. / min. Only if I am on the road
or due to low discipline on my behalf I am forced to use Zomig…..

I can with confidents say it did what I was looking for…… but it needs patience,
endurance and discipline until the set-up of the Stimulator is on the right setting….
and to accept (in advance) that it is not a magic built or a cure….. it is simply
a “technical device” a tool to provide us with relief…. and a higher quality of
life.

I suggest before submitting your self to any surgical procedure, as with the ONS
to try and see if one gets any relief by using Occipital nerve block (Suboccipital injection) it can be a good indicator that a surgical intervention might bring relief
above marginal level…..

I will ask Boston Scientific, and a Neuro surgeon to provide me with the latest information and studies, if available, and will try and post the information......

Michael

I am adding 3 doc’s to view.....
the first is the abstract of the case study of the ONS that is in my head......

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

the additional 2 are a study about ONS in spain.......

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

Michael


1407094024

Hello All,

Well… after four (4) years of use following the two surgical procedures needed to complete the implant, and a follow-up surgery to re-align the stimulator electrodes that migrated away, I'm about to have my fourth and final ONS surgery… 

This time the surgery will be to remove the entire ONS apparatus completely.  Once again, the stress relief loop has detached from the underlying muscle and one of the electrodes is trying to migrate away. 

I've gone through a lot in an attempt to make the ONS implant an effective tool to manage my chronic cluster headaches.  I endured months of recovery from the original implant surgery procedures and frequent trips to the hospital to upload and preset adjustments to the stimulation patterns.

My doctors and I arrived at the decision to remove the ONS system based on two main reasons.  The first is my lifestyle.  I refuse to let cluster headache rule my life.  If I'm pain free for a few hours, I want to spend those few hours the way I have all my life…  doing the things I like best…  Any thing less than that and I'm cheating myself… 

I'm 51 and physically active. I live in the Swiss Alps and I love to ski.   My sons and I can strap on our skis in the backyard and we can ski down to the nearest ski lift in a matter of minutes.  If it's not too windy or snowing too hard, I go night skiing after work.

It's all this physical activity that wreaks havoc on the implanted ONS system's stress relief attachments, wires and electrodes.  With the prospect of another surgery to re-suture the detached stress relief loops in the wire to underlying muscle and become a house Hobbit with a bad attitude waiting for the wounds to heal for the next month…  The decision was easy…  Out with the ONS!

The second reason for removing the ONS is even more compelling…  I no longer need the ONS to control my cluster headache.  I have a better and far more effective method of controlling them.  I'm now using the ant-inflammatory regimen that Pete developed and it's working much better than the ONS.

Unbeknownst to me, my wife Marta, had been keeping up with Pete's posts on the effectiveness of this regimen and finally sent him an email asking for the exact recipe of supplements…  Pete responded within minutes and she placed the order for the supplements over the Internet with a source in the States.  Don't get me wrong…  Swiss medicine ranks among the best in the world, we just don't have the same selections of over-the-counter supplements…

It's best to agree with your wife every now and then...  Even more so if she comes from Texas...  She has lived with my cluster headaches too…  so I started the regimen...

It took me a month on this regimen with an increase in the vitamin D3 dose from 10,000 IU/day to 15,000 IU/day, and two lab tests for 25(OH)D, before it finally started working.  I'm not totally pain free, but the frequency and intensity of my cluster headaches have dropped considerably…  My cluster headaches are now very manageable and the infrequent hits that come while sleeping are easily dispatched with demand valve method of oxygen therapy in short order.  On top of that…  I feel better, sleep better and I have more energy.

For the cluster headache sufferers considering the ONS implant surgery, here is the benefit of my experience with it.   ONS isn't for everyone who thinks they've reached the end of their rope.  You must exhaust all other treatments and medications first…  and I mean ALL…

If that means trying oxygen therapy with hyperventilation… try it, but learn how to use it properly and make sure you have enough oxygen on hand in the larger home size cylinders, a good mask like the o2ptimask and a regulator capable of delivering a minimum of 25 liters/minute and preferably higher.  The small E-size oxygen cylinders may be great for work, but they're only good for 3 cluster headache aborts…  If you haven't tried the anti-inflammatory regimen, try it… but give it some time.  These two methods work best for me…  If you haven't tried busting… something I cannot do…  try it too…  Talk with the experts at ClusterBusters.

If you've tried all these methods of controlling your cluster headaches and you've still not achieved acceptable relief from your cluster headaches, then, and only then would I consider the ONS implant surgery. 

I would start with an open mind, as best you can with cluster headaches, by learning everything possible about ONS, its effectiveness, limitations, failure rates, and the time it takes to make ONS work properly.   Don't expect magic relief.  It's going to take a lot of time, constant attention and you need to be prepared to put up with a lot of strange new things to do.  Cost is also a consideration that cannot be overlooked.  Be sure you know what is covered and what isn't if medical insurance is involved.

There is also something else not many neurologists or neurosurgeons will tell you or be able to adequately describe to you…  You're going to have an alien thing inside your belly and the back of your head…  and you'll know it's there…  The actual stimulation is not painful, but it can and will be distracting.  It's something you'll need to adjust to in order to gain any confidence in controlling your cluster headaches. 

In the end, it's still a tough decision even after all the considerations…

To be fair in my assessment of the ONS capability…  It did work…  I kept good logs on my cluster headaches and how well the ONS worked to control them…  The highest effectiveness during the day was 90% and that was acceptable.  ONS didn't work while sleeping.  By the time I was awake enough to reach for the ONS remote controller to signal a stimulation pattern, the pain was usually too high for the ONS to have any meaningful abortive effect so I ended up at the oxygen cylinder with zomig at the ready.

I remain confident that the ONS capability will continue to improve with time.  Unlike today’s cardiac implants that can sense electrical irregularities in the heart and automatically trigger an appropriate pace making function, ONS still lacks the capability to sense the nerve impulses signaling a cluster headache is about to hit and trigger an appropriate stimulation pattern to abort the attack.  Adding this capability will make a big difference in the overall effectiveness of this technology to control cluster headache.

I fully expect to see the application of nanotechnology and ONS like implants the size of a grain of rice in my lifetime.   However, technology like this will be developed for other neurological disorders like migraines not cluster headache…  We're still an orphan disorder, and as such, dedicated funding for cluster headache research will remain limited.

Michael

(Pete, Tks, for your help)

wildhaus wrote on Feb 9^th, 2012 at 12:56pm:

Hello All, Well… after four (4) years of use following the two surgical procedures needed to complete the implant, and a follow-up surgery to re-align the stimulator electrodes that migrated away, I'm about to have my fourth and final ONS surgery…..............  (Pete, Tks, for your help)

WOW...what an absolutely awesome, informative, heartfelt and delightful post....

Once again I am reminded why I am here...with THIS family...it aint available anywhere else.

Michael (Laurie and Gary too)...all I got...prayers, vibes, thoughts and best wishes...THANK YOU! (.....and that Pete guy, with his big heart, seems to know a thing or two too ;)......)

Best,

Jon

@Wildhaus
Yes. There are limitations if you have this implant. That is something that worries me a bit too. I am 40 years old and also not willing to start life like a 75 year old at this moment. But I was told that when the electrodes are really steady (grown in) they can take some beating. The rice grain size stimulator does exist by the way. I've seen it already maybe 8 years ago START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE;   in London. That will be the future. No idea why it's not being used today.