I hope your doing well Michael.  What is CB?

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

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

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

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.

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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

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

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


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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

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

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

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

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

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

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)