Jay,

Don't Do It!!!!  And don't let them talk you into it without a long hard look at the limited possible benefits vs the downside of expense, pain & discomfort, and the high probability of a psychological let-down from knowing you bought a lemon...

At best, the ONS will only buy you partial relief during the day while awake.  It will do nothing for you when sleeping where attacks hit and gain in pain before you awake... at that point the ONS will be useless... and sumatriptan iffy.  Ask the neurosurgeon about that... and the percent of patients who have gone through this ordeal and still claim it was worth it...

Only oxygen at flow rates that support hyperventilation worked most of the time under these conditions.

For a complete first-hand account of ONS complete with photos from the surgery, read the following link posted by Wildhaus...  Read all 4 pages...

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That was in 2008...  Michael just went in for surgery this weekend to replace the sending unit in his tummy...  it failed.

That makes ONS a very expensive and very painful attempt to control your CH... that will only work while awake and then not all that well...   

Try the anti-inflammatory regimen first.  You can find it at the following link: 

It's titled "123 Days PF And I Think I know Why" , on New CH.com Forum. To view it, please click the link below:

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Take care,

V/R, Batch

Dyno,

One of the benefits of an open forum like CH.com is the exposure to diverging opinions.  We welcome them as essential elements of an informed decision making process many visitors and members here must make in their journey to find an effective method or methods of controlling their cluster headaches. 

First hand comments like yours on the ONSI carry great value if they're objective covering the good, bad, and other aspects of this surgical procedure including the risk – reward ratio.  You may have been fortunate, but greater than 50% of the CH'ers who have had the ONSI surgical procedure have encountered adverse events requiring additional surgery to re-attach electrode leads that migrated away from the occipital nerve or to replace depleted batteries. 

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I've followed three intractable cluster headache sufferers through this procedure maintaining frequent contact with them.  One is a close friend and I've visited with him frequently since his ONSI surgery.  All too often we would meet in the middle of the night at the oxygen cylinder to abort our cluster headaches...  The ONSI did little for him at night.  All have undergone one or more additional surgical procedures on their ONSI following the complete implant procedure; One contracted an infection during the initial electrode implant surgery that required the electrodes to be removed until he recovered from the infection.  They all still have cluster headaches...

When it comes to discussing diverse positions or opinions on a given method of treatment, it's often best to define a common set of terms that can be used to frame the discussions.  I agree with your comment that ONSI is not for everyone.  Providing the metrics like overall and long term efficacy discussed in the link above would be helpful in explaining why it's not for everyone and that it is very invasive. 

While I agree ONSI has promise as a surgical procedure of last resort for some intractable cluster headache sufferers, it still lacks the technology needed to make it a more effective method of intervention. 

For example, ONSI presently lacks the capability to process nerve signals like an Implantable Cardioverter Defibrillator (ICD) (similar to a pacemaker) that is capable of detecting and processing signals in the heart's electrical system indicating a cardiac arrhythmia then generate the appropriate level of defibrillating electrical shock until the arrhythmia subsides. 

Until the ONSI has a similar capability to automatically detect the onset of a cluster headache and deliver the appropriate nerve stimulation without any user intervention, it's use will continue to be a manual only process that requires the user to take the small TV-like remote control unit in hand, point it at the ONSI control unit surgically implanted in the belly fat, and select the desired signaling pattern… 

Obviously this would not be possible while sleeping so it really doesn’t work 7/24.  Moreover, to call this surgical procedure "non-invasive" is clearly misleading…  The Occipital Nerve Stimulator Implant surgical procedure by its very nature is invasive.

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All the wires shown in the photo at the right were later implanted under the skin from the neck diagonally down across the back, around the ribs to the control unit surgically implanted in the belly fat.

An invasive procedure is one which penetrates or breaks the skin or enters a body cavity. Examples of invasive procedures include those that involve perforation, an incision, a catheterization, or other entry into the body.

Surgery is a typical medical invasive procedure. An open surgery means cutting skin and tissues so the surgeon has a direct access to the structures or organs involved. The structures and tissues involved can be seen and touched, and they are directly exposed to the air of the operating room.

Accordingly, Jay needs all the information he can get on this surgical procedure… both good, bad and other.   He also needs information on the non-invasive alternatives and their efficacy in order to make an informed decision. 

If Jay hasn't tried oxygen therapy at flow rates that support hyperventilation/the demand valve method of oxygen therapy, the anti-inflammatory regimen with vitamin D3, or cluster busting…  he has not exhausted all the non-invasive methods of controlling his cluster headaches.

You might want to ask Mike Pollock at OUCH-UK about the demand valve method of oxygen therapy.  He's had the ONSI procedure and still uses oxygen therapy.  Mike tried the demand valve method of oxygen therapy during his travel here to the US while staying in Florida in 2008 and found it effective.

Take care,

V/R, Batch

Hey Jay,

Before you decide on the ONSI, you need go to your primary care physician (PCP) and ask for a blood test of your vitamin D3 levels...  a.k.a. 25(OH)D.  And if your 25(OH)D is below 100 nmol/L, you're vitamin D3 deficient.

Dr. Peter Lewis, MD, an Integrative Physician, suggests all patients should have their vitamin D levels routinely checked at least once or twice a year. As a practical guide to diagnosis and management, he suggests the following (25(OH)D levels in nmol/L):

• <100 = Deficient
• 100-200 = Optimal
• 135-225 = Normal in sunny countries
• 500+ = Potentially toxic (this would require a sustained daily intake >/= 40,000 IU)

[Note: To convert to nmol/L to ng/ml, divide by 2.5]

Check your email, I sent two papers by Dr. Peter Lewis will give you what you need to tell your physician what you want tested and why...  I've also sent you a paper on the use of oxygen therapy at flow rates that support hyperventilation.  This method of oxygen therapy is very effective CH abortive with much shorter abort times than the traditional oxygen flow rate of 15 liters/minute.  The average abort time when using this method of oxygen therapy is 7 minutes for CH between Pain Levels 3 and 9.  If you start it early at the first sign of a pending CH, you can easily achieve abort times of 3 to 4 minutes to a pain free condition.  This method of oxygen therapy will work when other methods fail, particularly at the higher pain levels.

This paper also has a section on the anti-inflammatory regimen. I provides all you need to start this regimen after you discuss it with your PCP.

If you are deficient, please consider giving the anti-inflammatory regimen of Omega 3 Fish Oil, vitamin D3 and calcium citrate a try.  Roughly 80% of the CH'ers who have tried this regimen have reported a significant drop in the frequency and severity of their CH or they've gone into remission and are now pain free...  It works for episodic and chronic types equally well.

If you choose not to believe what I'm saying, at least go to the following link and read what other CH'ers are saying about this regimen.  The thread is titled "123 Days PF And I Think I know Why", on the New CH.com Forum, can be found at the following link: 

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There are 12 pages of posts on this regimen...

Moreover, at 20 cents USD/day this regimen provides a very healthy alternative to some very invasive options for treating CH... That's a real deal.

As far as a surgeon actively promoting a particular surgical procedure goes...  I'd say off hand, it's unethical...  Remember the surgeon's motto...  "A chance to cut is a chance to cure... "  and surgeons are in the business of cutting...

Take care,

V/R, Batch