Thanks for the link.

Just FYI, Dr. Saper runs the Michigan Head Pain Institute, everyone knows Goadsby (practices out of Univ of San Fran and in London), and Dr. Silberstein runs Jefferson Headache Clinic.

Laurie

Thebb - That's really not very fair...  And also you might have asked me before posting that!

I would say that this is not the norm of what happens after ONSI.

For me, I went from having 6+ CH a day down to 0-2/day for now.  And in the past couple of weeks, I have had more days without CH than with - for the first time in nearly 5 years of having CH.  Also, the attacks I do have now are much less severe.

For my chronic migraine, I went from pain that ranged 6-10 (for my migraine pain) every day - got bad every single day.  It is now averaging a 4 and not much worse than that at all most days.

I have had a TREMENDOUS amount of relief from my occipital and supraorbital nerve stimulator, and I would go through what I'm going through 100 times over for the relief it has brought me.

This is the first time in 7.5 years of some variety of headache pain that I have had hope and found something that has a major impact on the pain.

For those who are suffering relentlessly without relief from medication or alternatives, it is worth it to give a look into ONSI....

Carrie

Lizzie2
I hope you accept my apology. I was completly wrong.I am a dumbass and didn't think.
And should pull my pants down in the middle of the square.
I am so sorry. What a putz I am.
sincerely,
John Bebee

No dropping of the pants will be necessary!

As I said via PM, I definitely forgive you - and I don't want you to feel badly at all.  I just wanted to make it clear how much I have valued this surgery, in spite of the infection I have been coping with.  Even if my entire stimulator has to be pulled out and re-implanted, it will still have been worth it for the relief I have received.  (Not complete, but quite good compared to how I was before!)

All water under the bridge, Mate!

Hugz,
Carrie

Quote:


Are you asking out of curiosity or out of knowledge that I haven't tried alternatives in that sense?  When I initially wrote that statement, I meant alternatives in the general sense of the word, not specific to the "alternatives" used here.  But the following is my history of things tried, in brief! (haha...)

No, I haven't tried shrooms or seeds.  I cannot risk it with my job.  I take no offense and fully support those that choose those methods.  Shrooms, I couldn't do anyway, as I have a history of having psychotic reactions to a couple of different meds, and I would fear even a small dose could send my apparently unstable brain into some alternate world permanently.

Seeds on the other hand - still not completely out of the picture, but again, I truly cannot risk my career.  I could lose my license.  The only other factor aside from fear of loss of license (which would, definitely, be bad...) would be the fact that I absolutely cannot detox off some of the other medications I am on, and I have never found definitive answers on whether or not seeds are safe when combined with my other meds, such as methotrexate, GI meds, and others.

But all that aside, in terms of the conventional medical treatments I have tried, they include the following: inpatient IV (and some of these outpatient as well) infusions of DHE, reglan, thorazine, steroids, magnesium, droperidol, fluids, lidocaine, depacon, benadryl, haldol, propofol and some other things that I cannot recall off the top of my head.  

Keeping in mind that I have both a chronic migraine (New Daily Persistent Headache) and chronic CH, I've tried zyprexa, thorazine, lithium, verapamil, depakote, lamictal, lyrica, neurontin, topamax, cymbalta, elavil, pamelor (nortriptyline), geodon, inderal, zonegran, prozac, parnate, methergine, melatonin, magnesium, riboflavin, gabitril, indomethacin, co-enzyme Q10, Kudzu, mexiletine all with intention to prevent.

For abortives, I have tried imitrex injections, maxalt, frova, amerge, zomig tabs and NS, relpax, DHE injections, migranal NS, thorazine, zyprexa, geodon, compazine, phenergen, multiple steroid tapers, red bull.

In addition to all that, I have tried Botox 3 times, have had so many nerve injections that I've lost count, tried physical therapy several times, accupuncture twice, chiropractor, massage therapy, went to a TMJ specialist, went to a dietician, sinus surgery, and other things I cannot remember quickly.

For CH alone - I will say that I found varying degrees of relief with some of that.  I cannot tolerate some of it that did help - I can't take imitrex injections because of my heart rate, couldn't tolerate lithium even below therapeutic levels in the blood although did have some success with it combined with verapamil, and the steroids worked every time to give me some reduced hits or PF time temporarily, but I cannot receive them any longer due to the bone disease avascular necrosis.

I remain on verapamil at a total of 480mg/day (120mg 4x/day), which doesn't do a whole lot - but seems to add some benefit to reducing the number of hits I have a day, so I have not weaned off that yet since the stimulator, although that is one of the meds I plan to get off.  I use Frova and Amerge in a preventive sense, but only up to 4 days a week total, and not taking either one much at the moment since the stimulator.  I use O2, but I must admit I rely on the triptans more heavily because it made my life easier to prevent the attacks than to chase them down with O2 once they started.  O2 does work well for me, though, most of the time, and I certainly used it on days where I wasn't using triptans to prevent.  Some of the things on my list worked for awhile then failed or I just didn't tolerate well for some reason.  Kudzu worked in the first 8 days I was on it, then had emergency surgery for a hemorrhage and the hematologist told me I had to stop taking it.  I later tried Kudzu again by my own choice and was noticing some benefit before I realized that it can kill rats when combined with methotrexate, so that is not a recommended combination.  Oh and red bull works wonders as an abortive for me, although with my heart I tend to limit my use of red  bull to once or twice a day.

I think you get the picture...  There is very little I have not tried, and the things I have tried, I have given a good and fair trial of - several months on each med as long as the side effects weren't too great.  Went up to high doses on all of them for as long as I could tolerate.

3 years ago, I went for a consult on the stimulator, and was told at the time that it wasn't a good option for me due to my size (being thin) and where the attacks occurred (mostly front and side of the head/face).  3 years later, I walked into a routine appointment with my neurologist and 2 specialists from England happened to be visiting - one of them knows Mike P. well and knows everything to know about the stimulator.  They pointed to the studies regarding occipital nerve stimulation and CH, and said it would be my best bet with both headache types at this point, and would get me off some of the meds I'm on.  So I went back to the same neurosurgeon, and he said lots had changed, and he was willing to try it - along with the addition of the supraorbital lead on the bad side. (My right...)  I did the trial in January, and had greater than 50% reduction of pain severity and attack numbers, which was enough to go ahead with the permanent procedure.  I had the permanent implant in May, and I am at the point where I don't even have CH hits every day, and the ones I have only last 30 minutes now instead of 45-90, and don't seem to be as severe.  The chronic migraine pain has been reduced, although the clusters have seen the greater benefit from this procedure, between my 2 headache types.  If it weren't for the fact that I am currently battling the infection from hell on the back of my neck, I would have weaned even further off my meds.  I'm currently working on one med in particular that I've been on for 2.5 years, and then will wean off verapamil after that, as well as a couple of GI meds I'm on - once I get the other meds off.  It is very exciting to be at this point in my life.  Although the thought of potentially losing the stimulator to the infection is a bit daunting, but I could get it back after waiting a period of 3 months.  So all will not be lost, even if the infection comes out the winner in this battle we are having.

I haven't tried the "alternatives" so to speak, for the reasons I stated above.  Someday, when I'm no longer working as a nurse or in medicine, then I may give more thought to trying the seeds.  And this is only if the  CH's become a problem again, or if the seeds are proven to help with migraine as well as CH, as some postulate may be a possibility.  I will not ever be trying the shrooms, for the reasons I outlined above.  So I didn't exhaust every single possibility available, but I tried all of the medical therapies offered to me until there were none left to try, and so here I am.  I do not regret having chosen to get the stimulator, even in spite of how bad the skin infection is (it is, afterall, localised to the skin and not a systemic infection!), and even if the stimulator must come out and then I would have to go through everything all over again in a few months' time.

Sorry for the lengthy response.  Just felt I had to justify it....  It's been a long time since I have stated what I tried in that form.  I still think the stimulator is not a first line treatment, but one to go to after all the alternatives (both medical and "alternative") have been looked at, within the realm of possibility.  When I initially wrote alternatives, I meant that in a general sense really - not in the sense of the alternative therapies only.

So that's that.  Hope it is helpful to someone out there!

PF wishes,
Carrie

**Edited to fix the 4 days a week total preventing with Frova or Amerge.

Hello CArl & Carrie,

I accept that everyone has their own opinion but I can’t understand some of the
outright rejection / resistance of ONS.
I’ve had my stimulator in for 5 weeks now and have gone from 2 to 6 ch @ 9k +
per day to 1 ch every 3.5 days with a HUGE reduction in intensity. In fact I have been
able to control the pain from ALL with the stimulator ONLY.
That’s right no other abortive measures.
I’m not going to attempt to produce the statistics but personally I have to call this a success.
I am reclaiming my life back from these damn things and the side effects of the meds. And I am now only on Verapramil and the good Doctor and I plan to wean off of it if after 90days from implant I am doing as well.
My list of meds isn’t quite as long as yours Carrie, but almost. Finally 3 different Doctors
in 3 different instutions gave me the same diagnosis “Drug Resistant Chronic Cluster Headache”.
A dubious distinction at best.
I hope you beat the infection soon sister.

Carl, what do you mean by conventional meds? I am aware of only 1 drug that is FDA labeled for CH. If you know of others, please let us know what they are. Do you hold them to the same standard to which you hold ONS? Any other drug for prevention or abortion of CH is just a crap shoot & you got lucky.
Reformatted his brain? Ok….. Has anyone suggested a Neuropsychologist to mikeP?

Thebbz, Please enlighten us all with more photographic evidence of unknown origin
for other therapies, like a member of a federal drug task force with his shotgun stuck in the ear of some poor ch head just tryin to do some “bustin” with his shrooms or post-
amputation pictures of someone who’s triptans collapsed the veins in their extremeties
(it has happened) or how about ER photos of some other ch sufferer getting his heart juiced with the defibrillator after using too much summatriptan? C’mon man, post it!

Ok. Maybe I’m ranting a little. I just thought this forum might be the place for the intelligent exchange of information regarding therapies based on fact and experience.
That’s why I posted the link in the first place.
But this is the “net”, anything goes. Right? The greater the shock value the better.
No need for empirical, clinical data.

So there you go, ONS information for your perusal, take it or leave it.

For me it is a life changing experience.

I hope you all find something that is even more effective with even less side effects.

Neuro

Kelly,

If I have offended you then I apologize.
My beef wasn't directed at you.
You would have had to be here 8/15 08 to understand (reply #2).

But it's off my chest and I'm still interested in the exchange.

Neuro

neuro wrote on Aug 27^th, 2008 at 8:51pm:



Hello Neuro,

I am well aware that there is only 1 drug which is FDA labeled for CH, & you know full well what I am referring to when I refer to conventional drugs.
I'm also pretty certain that if there were another FDA approved medication for CH.Then no doubt you yourself would have already have given it a bash.

As for me winning the crap shoot, well bugger me, & hundreds like me eh, didn't I get lucky....


I echo your concerns with regards to Mike P. Why not Email him, & suggest it yourself. He's one of the Trustees of OUCH(UK)

I don't consider ONSI to be an option at all, certainly not on your 5 week update. I would hope that no one would even consider this procedure before first
trying all other options available. The risk of infection, & death are too great.

I hope that's answered your questions clearly enough. Now maybe you would be so kind as to answer mine.


How much did the operation cost,  & who paid for it?
Did you try all other Meds first?.....FDA approved/Conventional, & Alternatives? ( Just to be clear)
What happens if the implants move, could they damage the nerves?
What would be the procedure to reposition them?
Is scare tissue going to be a problem when one has to have the  battery changed?

It will be interesting to see how well you, Carrie, & others who have had this procedure done are doing in a years time.

I hope the improvement continues....

However hopefully by then, Dr Halpern, & Dr Sewell will have more positive results from there research, &
sufferers will no longer be treated as Lab Rats, & have to face the surgeons knife.

Have a good weekend.

CArl...