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

Updates very informative....thank you.

Wishing you well,
Jackie

I add 2 pic. to illustrate my "now" situation......
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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)
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                                           (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

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

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

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


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

AND

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

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

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

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

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

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



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

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 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 Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ) 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

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