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Lee_Ann

Occipital Nerve Stimulator

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I feel compelled to write this for anyone considering the ONS.

IMHO, it is nothing more than an implanted TENS Unit.  It may work wonders for migraines, but I seriously doubt it could stop the pain of a clusterheadache.  The pain is simply too great to mask with electrical stimulation.

My husband Dan had the trial in April and it did not work.  We were under the impression that it would prevent a clusterheadache.  I don't believe this is the case.  I think it is designed to be a counter irritant, something to mask the pain.  The surgeon won't tell you this before, but if you are considering this option, I would be sure and ask if this is the theory behind it.

And all that said, I know it is hard to say no to something that a dr tells you is 90% effective.

If Dan had to do all again, he would definitely choose the alternative meds before trying the ONS.

Lee Ann 

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I feel compelled to write this for anyone considering the ONS.

IMHO, it is nothing more than an implanted TENS Unit.  It may work wonders for migraines, but I seriously doubt it could stop the pain of a clusterheadache.  The pain is simply too great to mask with electrical stimulation.

My husband Dan had the trial in April and it did not work.  We were under the impression that it would prevent a clusterheadache.  I don't believe this is the case.  I think it is designed to be a counter irritant, something to mask the pain.  The surgeon won't tell you this before, but if you are considering this option, I would be sure and ask if this is the theory behind it.

And all that said, I know it is hard to say no to something that a dr tells you is 90% effective.

If Dan had to do all again, he would definitely choose the alternative meds before trying the ONS.

Lee Ann 

Great post.  Thank you.

       Joe

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It's June 3rd and have had the ONS for 1 day-  so far it has helped me with 3 headaches. Stopped one entirely and brought the other two down to a 6 from 10+

I have not had to use imitrex due to the fact the ONS is working to reduce the pain.  It is not a cure all- and of course it has only been 1 day for me but so far- it seems to be helping.

Will keep you all posted.

~Chris

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It's June 3rd and have had the ONS for 1 day- 

How are things to date Chris?

CArl...

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Hello All,

THe ONS is working very well for me. I have had 6 headaches that were all aborted within 20 minutes- and the pain never got past a 6.  I have had 2 that woke me from a sleep that were pretty bad- but were under control within 1/2 hour and the pain decreased rapidly- from 10 to 5.

I have noticed also that my regularly scheduled headaches are no longer coming on-

I am scheduled to have the trial removed on June 10th- sadly- but will be planning the permanant implant asap- hopefully within a week of the trial removal.

I will keep you posted.

Ck :D

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I sure hope you have continued success. This was a procedure offered to me by my Doc. but was to chicken to do it. He also offered one where he basically cut the nerve. That didn't sound too appealing either. This is really interesting to me though. I'll pray for the best.  :) 

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Can't keep the trial more than ten days- not sure why.

Still having great success-  after years of being chronic- this is a blessing!

I am scheduled to have the permanant placement on July 7th.

I vote for yes for anyone considering this procedure!

Ck :)

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Hi Chris,

I am so happy it is working for you.  I think the reason you can't keep the trial longer is that there is some risk of infection but 10 days is definitely long enough to make sure it works.

Good luck with the permanent placement.

Lee Ann

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I vote for yes for anyone considering this procedure!

Ck :)

Hello Chris,

I can see from your post, & previous one's, that you are a big supporter of ONSI.

I am surprised that you haven't first tried all of the Alt's before considering surgery.

My own opinion is, the money being directed at ONSI would be better spent researching Psychedelics. Given the proven results many are having.

Reading reports from recipients of ONSI. I see non that are still not having to use a daily cocktail of drugs, & oxygen.

Collected data as to the effect of this procedure, by the leading health professionals is some what vague, to say the least.

Personally, I think that there are sufferers out there who, if the leading CH doctors told them to shit through the eye of a needle once a day, it would stop there pain, many would be carrying needles. Instead they are opting for ONSI.

I think you have made the wrong decision Chris.

I hope you don't convince any others to do the same.

I'll sign off by wishing you well.

CArl... 

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I think I'm going with CArl on this one. Not to say I'm not happy about your found "success" but, I went from 10's to almost nothing with out a single thing being put in my body. I wish you would give this some more thought and logic before you jump in. This is a procedure that you'll have to live with for the rest of your life. Alt's have no scaring or wires in your head and thousands of us have PROVEN success. For me, it's a no brainer. I wish you the best.

Mad6string

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Ditto what Mad6string said, however my caveat is I am episodic not chronic so my alt therapy results might be different than somebody who is chronic. Good luck with what ever you decide Chris but I personally would give the alt therapy a chance before finalizing anything invasive.

David

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Hi Chris!

I am still so happy that you have found some relief but I have to agree with CArl, Donnie, and David......I SOOOO wish you would explore "alt meds" before you take this route!!!  That being said, I will continue to wish you good luck regardless of your decision and sending PF thoughts and wishes your way.

Dallas Denny

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Hi Chris,

My son Michael is (or was) a serious chronic and until we found psychedelics, we would have taken - and I believe took - any route that promised even minor relief. After exhausting the usefulness of the typically prescribed medications, he has ended up with an addiction to Methadone that we will probably be dealing with for the next several months. That's okay. For him, the narcotics were a Godsend. He still lay in bed all day, curled up in a ball, obviously suffering too much to do anything but - but he was no longer in constant, excruciating agony. He had no life; but it beat having no life with the pain. Then we heard about psychedelics and after searching for several months, found a single dose of LSD. He took half of it and several hours later found himself completely headache-free! And it lasted for 5 full days! We subsequently found that mushrooms did the same thing. A sub-hallucinogenic dose gives him at least 5 full days of COMPLETE relief. We haven't as yet been able to extend his pain-free time - but, still.... 

What I'm trying to say Chris, is that I think I understand your reasoning in opting for the surgery. It at least "seems" to work where nothing else has, or at least nothing to this extent. Even partial relief, when you're chronic, is a blessing. This though, seems to be a partial, permanent solution to what could be a temporary problem. Operations suck! I know. I've had 2 operations on my cervical spine that fused 5 vertebrae. The discs were scraped out, cadaver bone plugs inserted between the vertebrae and plates spanning the effected vertebrae screwed into the bones. They'll always be there. And I can feel them. And I'll always need daily narcotics to mask the almost complete stiffness in my neck. There are ALWAYS side-effects and complications. They're permanent, unnatural alterationS to our bodies. A trade-off. In this instance, a lessening of your pain in exchange for the permanent embedding of electrodes and other foreign bodies in YOUR body.

I know you're anxious for the permanent implant. Who wouldn't be? But now you've found that there's another option that could work as well or better and it could save you a trip to the operating table. If it doesn't work, nothing's preventing you from having the implant afterwards.

Whatever you choose to do, I wish you good luck and God speed.

Ron

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From the Lancet:

[highlight]Treatment of medically intractable cluster headache by occipital nerve stimulation: long-term follow-up of eight patients

Brian Burns MRCPa, Laurence Watkins FRCSb and Prof Peter J Goadsby MDa, c, Corresponding Author Contact Information, E-mail The Corresponding Author

Summary

Background

Cluster headache is a form of primary headache that features repeated attacks of excruciatingly severe headache usually occurring several times a day. Patients with chronic cluster headache have unremitting illness that necessitates daily preventive medical treatment for years. When medically intractable, the condition has previously been treatable only with cranially invasive or neurally destructive methods.

Methods

Eight patients with medically intractable chronic cluster headache were implanted in the suboccipital region with electrodes for occipital nerve stimulation. Other than the first patient, who was initially stimulated unilaterally before being stimulated bilaterally, all patients were stimulated bilaterally during treatment.

Findings

At a median follow-up of 20 months (range 6–27 months for bilateral stimulation), six of eight patients reported responses that were sufficiently meaningful for them to recommend the treatment to similarly affected patients with chronic cluster headache. Two patients noticed a substantial improvement (90% and 95%) in their attacks; three patients noticed a moderate improvement (40%, 60%, and 20–80%) and one reported mild improvement (25%). Improvements occurred in both frequency and severity of attacks. These changes took place over weeks or months, although attacks returned in days when the device malfunctioned (eg, with battery depletion). Adverse events of concern were lead migrations in one patient and battery depletion requiring replacement in four.

[/highlight]

Chris, I think the main thing you need to keep in mind is that like with any invasive process, once done, there is no turning back.

Wishing you the best,

Bobb

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Bobb,

Great info,both very promising and a little scary (lead migration). I for one will stick with my bust method but again I am episodic not chronic so it isn't fair for me to jump too far in on Christine's situation (even though I have in the past).

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Bobb,

so it isn't fair for me to jump too far in on Christine's situation (even though I have in the past).

I liked that comment, although yes I would suggest alternative if it works cool if it does not then ONSI.

I guess?

On the other hand maybe Christine has work that unables her alts?

anyhow Carl and others say truth and good advice, but in the end I hope Christine, you choose best for yourself and get best results :)

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Thanks for all the feedback.  One thing I feel compelled to clarify- this procedure is not permanant- it can be removed if it is not working.

I had so much success with the temporary- I was stunned! For the first time in 10 years I was able to get through a day without a headache- what a life changing event for me!

I have tried the RC seeds with no relief- amm waiting on the mushrooms to try these prior to the permanant implant (Misleading term).  If I have success with the mushrooms, I will absolutely delay the surgery- but what is worse- the ONSi which for me was minnimally invasive- even the trial- or continual mushrooms which may or may not provide the same relief-  I will give it a try and see how it goes-  Also, keeping in mind that if ever the psyolsibin (sp) gets medically approved- I can still have the ONS removed and go that route.  The surgery is really not as bad as some may think, but I do understand those with reservations.

Just think of how many people are walking around with pacemakers- it is a very similar- yet less invasive procedure.

For a chronic- I would give my hands for this pain to stop.

Will keep you all posted on how the trial with mushrooms go- maybe it will change my mind.

Thanks all,

~Chris

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Hey Chris I am following your case with interest, please do report how you are doing.

Do tell us also though how many RC seeds and how long did you take?

Maybe something went wrong as in not enough seeds or taken not enough times?

Some people get relief from minimal dosage and after one or two times others after more than that.

Just saying that to cheer you up :)

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