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Anyone had an occipital nerve stimulator implanted for continuous headaches?

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Migraine Headache
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Posted 5/29/2011 2:07 PM (GMT -7)
 

      I have been suffering from continuous headaches 24/7 for eleven yrs. The pain has

      been the same all this time and always both temples. I have exhausted all avenues.

       I am in Ontario, Canada and have started researching the ONS but i am  not having any luck finding anyone

that can do this surgery in Canada.

         Any help would be greatly appreciated.

    

Posted 5/31/2011 8:54 AM (GMT -7)
Hi,

I have ONS but I live in the UK, I have a contact in Canada who I shall email and get back to you as soon as I can.

In the mean time is this for your TMJ? I only ask as ONS will not work for that, but you should get some relief for Migraine!!

Hang in there

take care

Ann
Posted 5/31/2011 10:14 AM (GMT -7)
TMJPain, please check your emails.
Posted 5/31/2011 11:50 AM (GMT -7)

            Thank you Annuk. Yes it is for me but not for my tmj as that has been corrected now.

          It is for my severe bilateral headaches I have had for eleven years.

                 Got the email and thanks so much.

  Suzane

Posted 6/9/2011 6:52 PM (GMT -7)
Have you received anything from your contact in Canada? where in Canada?

How do you find your ons is working for your headaches?

Thanks Ann

Suzane

Post Edited (tmjpain) : 6/9/2011 7:57:35 PM (GMT-6)

Posted 6/24/2011 7:30 PM (GMT -7)
What is ONS? I have intractable chronic migraines. The neurologist can't seem to find anything to help relieve my pain. I have had brain surgery for an epilepsy disorder that was taken care of through having the brain surgery. My migraines have gotten so much worse over the past couple of years. I have tried DHE protocol, Botox injections, relpax, imitrex, maxalt, zomig, zanaflex, topamax, toradol, loratab, klonipian, and my list goes on.... I am at my wits end and don't know where to turn now. I have had a migraine for weeks now that doesn't want to go away! Have checked in to Nerve Decompression Surgery, but my insurance company turned it down and I can't afford to pay for it, it cost $15,000! I live in Tn and the only doctor that I have heard that does this surgery is in Houston Tx I would appreciate any advice any of you can share with me.

Mercyme
Posted 6/25/2011 4:22 PM (GMT -7)
Hi Annuk, have you received any info from your contact in Canada re: ONS?


Hi Mercyme, I'm Suzane, I think we have chatted in the chat room a few times. ONS is an occipital nerve
stimulator. You can google that to get more info. Like you I just want something to help me with my pain, even
just a little relief would be great. I have no quality of life, am on disability, have lost my nursing job, etc......
I have had continuous temporal headaches for eleven years. Hang in there Mercy, perhaps we will one day
have some relief.

Take Care
Suzane
Posted 6/26/2011 2:55 AM (GMT -7)
Thank you Suzane! I woke up at 4:30am this morning with Another migraine! This is really beginning to wear me down. It's going to be a long Sunday. Hope I don't fall asleep during church this morning. LOL! Thankfully I am a person that keeps going despite these daily chronic migraines, I feel I have no choice. I just took a toradol for my pain. I never take pain pills unless the pain is just unbearable, and this morning is one of those times that I needed it. I love my neurologist as a person but he is doing nothing to help me as far as the migraines go. I am going to make another appointment with a new neurologist on Monday, because I can't keep living like this. I have insurance but it doesn't cover every test they want to put you through and I'm not working so it makes it hard to pay all these medical bills. I went to UVA in Charlottesville Va for DHE protocol and that didn't work either. I'm still paying that expensive hospital stay! grrrr!! I went for a round of botox that didn't help at all. I have tried so many meds I am just so afraid that I'm going to have to live with this disease the rest of my life, it really affects my whole family because I have had to cancel so many family functions because of my migraines. I have a 10 year old little girl and regardless of how I feel I usually do things with her when really I should be knocked out on the couch.

I am trying to be so strong and always have been, after all I've been through brain surgery and if I made it through that than I can make it through these migraines. The only thing with these migraines is I am not getting many breaks of having no relief. There isn't a day that I'm not in pain. My migraines range from a 4 to a 10, so I have good days and bad. Pretty sad when you say a 4 is a good day, but I will take it! Sorry to vent so much this morning, but I'm in so much pain, just needed to vent to someone that understands my pain. :)

God Bless!

Mercyme/Cindy
Posted 6/26/2011 10:17 AM (GMT -7)
tmjpain, - I sent you an email a little while ago with some links in it to find a Neurosurgeon who might do the ONS procedure for you as that was the best I could come up with. Unfortunately my link in Canada is on the opposite side of the country to you and is unable to help - sorry!

mercyme, - I really feel for you at the moment as this is tough to deal with the relentlessness of constant headache. I feel you have had a lucky escape with the decompression surgery as this often does not work and sometimes creates more pain.

I am in the UK so have limited knowledge about how things work across the pond. It seems to me you guys have a really tough time getting the medications that you need because of the insurance companies and cost. However, we have cost issues here but from a very different angle. It sounds like the ONS would be very good for you mercyme, but you need to find a Neurosurgeon that does them, and the cost of this op is high I know but see what you can find out. It has worked well for me, I am still in some pain all the time but no where near the constant agony that I had before!! Any improvement is worth it in my book. Sorry I cannot be of anymore help

take care

Ann
Posted 6/26/2011 7:25 PM (GMT -7)
If you go to clinicaltrials.gov and type in Occipital Nerve into their search box you will find quite a few studies that have been completed or are recruiting at this time, if you find a Dr participating in this study then possibly you could contact them or research them.  If you want to participate in a study thats great, or if you want to just use this to find out more information than thats great too.
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