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Migraine is a true organic neurological disease. A Migraine is caused when a physiological (not psychological) trigger or triggers cause vasodilatation in the cranial blood vessels, which triggers nerve endings to release chemical substances called neurotransmitters, of which the neurotransmitter serotonin (5-HTT) is an important factor in the development of Migraine.

Migraine Sugars is a group for Sugars who suffer from Migraine Disease. Migraine is a biological neurological disease which can and frequently does negatively impact its suffers lives. This group is to allow Sugars who are also Migraineurs to share their experiences, treatments, and in general support each through the ups and down of this misunderstood disease.

This group can serve to debunk some commonly held myths about migraines and to educate non-migraine suffers about what the reality of what its like living as a Migraineur.

Please join if you have migraine disease or think you may have migraine disease or want to support someone who has the disease or find the subject interesting and have thoughts or ideas to add. Please do not join if you want to spread misinformation or be destructive, the migraine attacks do that without any outside help from others.

Lucky me, I have the "rareist" migraine of them all!

Posted By three little dogs on Nov 9, 2012 at 3:12PM

Before I discovered my newest BFF I had migraines for over 30 Yrs. off & on; some more painful than others, but I learned how to deal with then. Then when I was 64, yes 64, one day I thought I was having just one of my usual migraines, more painful, around the eye; stabbing into it. Started from my left back neck & ran quickly up to the eye like a speeding commuting train that just hit a brick wall when it got there. I knew I was about to receive one earlier that day. Feeling out of sorts; not my happy self; lights to brought; that dam TV just had to whisper with the TODAY SHOW & it was to loud. But mostly my 3 little dogs were sitting all over with no more room for me. After days of pain, & nothing working I'm back with my Dr. & she sends me to a Neo. Dr. who deals with pain. After a 5 min. talk, he told me what I had, Had a MRI, CT, BLOOD WORK & a few more tests. He was right on the money. So today I take two types of MEDS twice a day, with a + MEDS if I get a flair up. Going to a specialist gave my life back to me. Thank you God.

Sorry I haven't updated in months and months

Posted By wackdoodle on Jan 6, 2010 at 10:23PM

Dear Migraine Sugars,

I'm sorry I haven't updated this page at all in months.  I was living my life and dealing with financial and family issues.


I think I may have said in my last post that I went to my follow up appointment for the ONS clinical study in May 2009.  At that time, I found out that my ONS device was never turned on and that I was part of the "sugar pill" placebo portion of the study.  They needed to see if the knowledge that I merely had the device implanted was enough to trigger my brain to overwhelm the impulse to have an attack.


Uh no it wasn't.  Intially, because of the anesthesia and the fact that there was an electrode resting on my occipital nerve in my brain I had minimal migraine attacks but then by March and April I was back to having nearly constant attacks of varying severity.


When I went to the clinical study office I was mortified when I found out that the device was not on because I was sure that I felt some shocks going through my head.  Nope, it was my imagination but the clinical study people assured me that my reaction to getting the implant was the norm.  The placebo people were so hopeful that our minds did attempt to mentally stop the migraines in order to be free of the symptoms of this disease but eventually the pain from the attacks would kick back up.


I also think that I mentioned that when they did turn the device on I received a horribly strong jolt a shock that went through my entire body and was extremely unpleasant.  This happened whenever they would change from one setting to another.  The study people couldn't figure it out and chalked it up to my body being slightly overly sensitive.


So from the moment they turned the ONS device on until late July or August my migraine attacks were lessening and becoming more infrequent.  They ( the study folks) asked that I leave it turned on all the time, so long as I can stand it.  When the device is on depending on the setting that I have it on I can feel a strong tingling under my scalp to feeling a strong rhythmic throbbing sensation to feeling a very strong constant stabbing sensation.  I started on the mildest setting the tingling and found that my brain and my overactive nervous system rapidly adjusted to the impulses so I would have to up the Amps or change the setting.  Eventually by the end of July 2009 my brain had adapted to the initial low settings on ONS device and I had to have the settings and Amps increased.


Let me tell you I went to the clinical study office a bit pissed that my brain was overwhelming the device and that I was failing the study and failing the potential other migrainuers who could benefit from his device.  Once at the office the representative of the company that made the device met with me and I gave her an update on how things were going with the implant.  At that point I realized that even though I had had migraine attacks after the device was turned on that they had not been as bad as they were before and weren't as frequent.  I fact I was feeling pretty good and very energetic. I hadn't felt that energetic since before I turned 28 and the migraine attacks became increasingly more frequent.


So the representative from the ONS device company set about changing the settings for me and increasing the amplitude of the impulses to my brain.  And surprise when she went to change the setting, which I had not done in over a month, I got a huge shock.  I mean I jumped high off the chair and she could see my whole body tense up.  She couldn't figure out why this kept happening as she changed the settings.  Every time I got a jolt.  It got to the point where I would brace myself before she changed the setting.  Eventually we came to the consensus that I am just a circus freak - far to sensitive the electric impulse that when there is a change in the impulse my nervous system lets my entire body know.  It isn't much different from what happened with my brother-in-law and his MS.  If you pinched his leg he didn't immediately feel it but later on his leg would jump and kick then his entire body would spasm and he'd yelp in pain.  I remember read about his form of MS and that his spinal cord wasn't transmitting messages in a proper manner if at all and when it did that it could and would misread the message and overreact.  Well that was my response to the change in electric impulses directly into my occipital nerve - my body would overreact. I'm not even gonna mention what happened when I went into the SF Main Library through the metal detectors - I'll just say never again will I try to go through them or do I want to - I'd rather be strip searched or hand patted down.


OK so the representative from the ONS company changed the settings to stronger less rhythmic settings then she really upped the amps that the impulses could deliver and wow what a difference.  I left the office with a bag full of relpax just in case the new setting weren't enough but surprise they were terrific.  I actually would go days and weeks without having a migraine attack.  I had one level 5-6 migraine attack and rather than taking the migraine abortive (relpax and diazepam) I took two Tylenol and the attack was ended.  Then I realized that for the first time in almost two years I had just had a normal run of the mill mild headache.  It was incredible.  The device was working.  I found the perfect setting to keep the attacks at bay and left it there.  Instead of using the controller pad they gave me to change the settings or up the amps or turn the device off and on I used the strong magnet that they give me and I didn't get shocked by the device at all.


So things went swimmingly from the end of July to late September. Rare headaches, even rarer migraine attacks and I felt fabulous, free of pain and full of energy.  I mean I was starting tasks and finishing them and exercising lilke a madwomen because I felt so great.  I was actually even going out in social situations in because my inhibition problem was under control as was my extreme pain. I could focus and concentrate again.


I am not sure if I mentioned that I did have to give up my job as a bus driver for the city of SF.  I even with the device I couldn't guarantee that my disease wouldn't take a turn in a different direction and endanger the safety of the citizens of SF as well as my own safety.  So I was amicably separated from the city without prejudice due to a medical condition, meaning that should I desire to try to become a bus driver again the city will not hold my previous situation against me or my disease.  And way back in April I decided after applying for many and failing to get a new job I decided to try to apply for Social Security Disability.  I applied without the real hope that they'd recognize Chronic Intractable Migraine Disease as a real neurological disease, since most layman and general practitioners aren't even aware that migraine disease is a progressive neurological disease.  Anyway, after filling out the initial paperwork, the subsequent medical release papers and medical questionnaires I was approved for full Social Security Disability.  I was expecting them the want to examine me or to just flat out say "NO. It's just a headache" but there was no inquisition.  The medical review personnel a SSA was shocked that I had been able to work as long as I had given what my neurologist and gp had said as well as what the numerous ER reports had said about my all to frequent trips to the ER for treatment for attacks that had lasted a week straight or longer. They rule that I am full disabled, possibly permenantly.


Being approved for SSDI was bitter sweet.  Yes, the monthly payment would insure that I could have a roof over my head but not much else. And it meant that others were recognizing that I have a disease that is so bad and so unpredictable that it made working without any severe restrictions and exceptions being made by my employer impossible.  Regardless of being approved and receiving SSDI I told myself that I would only stay on it for 6 months before I resumed looking for and pursuing a new job.  So I'm back to looking for job that I can do, where I can be allowed to be a handicapped person with an odd often unrecognized disease and still thrive.


Anyway, let's finally cut to the chase. As I said everything was peaches and cream until the end of September when I started to again wake up with fairly severe migraine attacks.  I would realize that my ONS device was off for some reason and I'd turn it back on and get relief but I had to resume taking the relpax in the mean time.  Then I went to my first live NASCAR race in Southern California.  I drove to my sister's house then from my sister's house in Ventura to the race track in Fontana which was 111 miles away.  Everything was great at the track.  The extreme noise and vibrations from the powerful cars didn't bother me in the least.  The fumes for the cars caused no headache or migraine attack while I sat on the first day watching the Sprint Cup drivers practice. Nothing not a peep from my head but I was having gut problems but that is another story for some other time.  Then on the first day of practice as I was driving home in the horrible Friday evening L.A. rush hour traffic I was struck with a thunderbolt migraine attack.  I had to pull off the freeway and take my emergency Relpax from my bag and sit and wait out the pain.


I made it back to my sister's house and grabbed my controller console for my ONS device and upped the Amps.  Better but the next morning, race day for the Nationwide drivers, I was woken up at 4 am with an intense attack.  Again, as a precaution I carry all my medications with me so I took the relpax and diazepam and waited.  The attack receded and I dragged my nephews and their friends out of bed at 6am so we could head to the track for practice and the race.  At the track I was terrific.  No migraine attack, no headache, no nausea, no vertigo just my normal stomach ache.  We stood for hours out on Pit Road where the stock cars were revving up and rumbling just feet away from us with no reaction except excitement.


Then after the race shock of shocks.  The group that I had bought with me (willing) was munching down on our tailgating fare in the parking lot and suddenly my youngest nephew who had previous been migraine disease free at 19 started to say that he felt weird.  He was covering his eyes. He was nauseated and dizzy.  He was very agitated.  He was confused.  I watched him for about 10 minutes and though maybe he had heat stroke from standing on the hot asphalt of Pit Road then sitting in the sun-drenched bleachers for hours.  Then my older nephew who has migraine disease too, said "I think Jeff is having a migraine attack.  Look at his face.  It looks like your face or my face when we get an attack."  Sure enough he was right.  But I hesitated to give Jeff my relpax because he's never been prescribed it and he's never had a migraine attack but he has had heat stroke before.  I didn't want him having some drug in his body that could possibly worsen his condition if he had heat stroke.  Luckily Tylenol is a major sponsor of NASCAR and while in were inside the track I had my nephew visit the booth for Tylenol and get handfuls of free samples.  So we gave Jeff Tylenol and had him slowly but steady drink plenty of cool water and strip down to to his t-shirt and underwear and sit inside my car with the air conditioning on low.  After 30 minutes he started to feel better and he ate and we drove home.


By the time we got home Jeff was not feeling good at all.  He was very dizzy, confused, nauseated and that his head was throbbing worse like it never had before.  He said his spine was even throbbing.  He was sensitive to light and sound, he was intermittently angry and then elated.  By that time I had taken his temperature and for him it was one degree higher but normal and I was sure it was a migraine attack.  Of course my sister is a RN and she refuses to believe that not everyone has migraine attacks like she does (she actually has tension headaches - we know this because the migraine preventatives don't work on her but the tension headache medications do-still she wants to be part of my horrible crew of migraineurs do she insists that she "KNOWS" what migraines are like cause she's had them and treated patients in the hospital who've had them).  Anyway, my sister insisted that because Jeff has never had a migraine attack in his head that this couldn't be a migraine attack and must be heat stroke.  So she proceeded to try to treat him at home as if he had heat stroke - putting a cold wet blanket on him and making him drink ice water etc. This only made him feel worse until he was vomiting.  So I asked Jeff quietly is he thought he could be having a migraine attack, being that over the years he had witnessed my attacks and his brothers attacks.  Jeff answered "Yes.  I think this is a migraine attack and it hurts so bad."  I asked him if he wanted a relpax or if he wanted to go to the ER and let them examine him and treat him.  He said he wanted the relpax, that he had wanted it in the car but couldn't remember the name of the medication.  So then I asked him if he was having any other symptoms.  He responded that the room was spinning violently, that he needed to vomit and even after he did he still felt nauseated and that his neck was so stiff he couldn't turn his head .  Full on attack.  Poor thing.  I then told him that since he'd been dealing with the migraine attack for a while that it would be best if he took the pill the way that I do - crushed and mixed with a bit of water.  So I crushed the relpax mixed it with water when my sister wasn't looking and Jeff drunk it down.  I should have warned him that it tastes horrid.  He kept it down.  His older brother knelt next to him and told him that shortly he was gonna feel really weird and that it would be the relpax starting to work. Sure enough Jeff suddenly said he felt flushed then his arms were so heavy then he was tired, that he could hear his heart beating in his ears.  I also gave him 1/2 a diazepam and he willingly used a compazine suppository for the nausea and vomiting.  After an hour Jeff said the pain, dizziness and nausea were gone but that he felt so sleepy.  Yup migraine attack.  First one,very severe.  His brother said that he felt horrible about Jeff getting an attack because he had hoped that this disease had skipped his brother.


Anyway, Jeff was relieved from his attack and within three hours I was having an attack myself.  Boo!  I took my medications and went to bed.  Fast forwarding now.  I ended up stuck in Southern California longer than I wanted or planned to be because I kept having more and more and stronger and stronger migraines.  I couldn't understand it.


About two weeks after the race I had to go Arizona with my older nephew to an ice skating competition that he was competing. It was either sectionals or regionals (cannot remember) and my nephew was going to try to earn a position for the next up competition to go to Nationals.  However, my nephew had like two days before the start of the competition caught the Flu. But he still wanted to go compete and he believed that if he just rested in between practices he'd be fine.  He was partly right.  We were in Arizona for 5 or 6 days and he was sick until the day we left but still he practiced his ass off at each scheduled competition practice then after practice we'd go back to the hotel and I'd take care of him trying to help him get through the flu and recover from his difficult practices. However, I started to notice while we were in Arizona that my patience with people was growing shorter and shorter and that I was having more sensitivity to the weather and to light and noise and the migraines were back with a vegeance.  But I didn't focus on it because I was focused on my nephew.


Anyway, at the competitions he went out and skated with a fever and very runny nose as well as being dizzy but he gave it his all.  He didn't qualify for the next competition but at he got some high scores and let the skating world that he was back competing (coaches and other skaters had thought that he retired because his firs coach quit).


As we were leaving I my nephew finally felt well enough to drive and I kicked back in the passenger seat for the 700+ miles drive back to his house.  However again I ended up trapped at my sisters house because one my stomach problem had gotten really bad and unpredictable and two I was having uncontrollable migraine attacks again.


One night I woke up and it dawned on me that I couldn't feel the sensation of the implant in my head anymore.  I couldn't think of when the last time I had felt the thumping sensation in my brain from the implant.  I pulled out the magnet and ran it over the battery pack in my chest expecting the device to suddenly turn on but it didn't.  I kept running the magnet back and forth over my chest - no reaction from the device.  So I pulled out the controller console and tried that. For about 20 minutes the thing looked for a signal and waited for a response from the implant in my body and it got nothing.


What the hell?  Here I am standing in my pjs at 3am in the dark placing this round paddle over the battery pack and nothing was happening. No huge shock, no little shock in fact the controller is saying that something is wrong it cannot find the unit.  WTF?  I stumbled into my sister's room and found some new batteries for the controller thinking that the controller was the problem.  Nope.  Suddenly I remembered that when we left the hotel the bellhop had failed to show up with a luggage cart so we had carried all of our heavy luggage down to the parking garage alone.  I had overloaded my bag so it weighed like 25  pounds and I had to place it over my left shoulder and the strap had pressed hard against the battery pack and wires in my chest.  I suddenly thought "oh my gosh I disconnected those wires that run from my head to the battery pack in my chest when we left the hotel."  I panicked. Finally I remembered to take my medications but then I thought "okay the device is off and my migraine attacks are back and as bad as they were before the implant".


The next morning I called the clinical study people and told them what I thought had happened they scheduled me for an immediate appointment for an x-ray - to see if the leads were indeed disconnected or damaged. Then I called the representative from the ONS device company and told her what I thought had happened and asked if she knew anyway that I could fix it myself.  She calmed me down and said there wasn't anything I could do short of self-surgery.  She told me that when I got back the SF that she'd meet me at the hospital for the x-rays to see if the leads had been disconnected or shifted.


So I got back to SF driving 476 miles with a intense migraine attack and two crazy cats in tow.  I got home the next day off to St Francis for a chest and head x-ray.  True to her word the rep met me at the hospital and stayed with me through the x-rays.  I didn't realize but she's actually a nurse practitioner or some such but that she's certified to read x-rays. So she and the x-ray tech immediately read the x-rays.  She looked at the implants position on my occipital nerve. It hadn't moved and the wires (leads) were intact.  She then followed the path of the wires down my neck looking for damage to the wires leading to the battery pack.  No damage.  Then she looked at the chest x-ray.  The leads were still connected and intact.  The battery in the experimental ONS device that I had gotten had died.  Terrific news in a way.


So since late September when the attacks were increasing the battery in the ONS device was dying until it finally gave up.  The rep assured me that the company would replace the ONS device for free and they would put in a rechargeable unit with a lifespan of 5 to 7 years on high amps rather than the experimental battery pack that was meant to last one year or so on moderate impulse.  She said she was glad that I realized there was a problem and called her because now she knew to contact any other study members that were set on high amps and alert them and prep them for replacement of the battery pack. Also, that the company now would know definitively that that battery should be rechargeable when first implanted and that the higher the amps and shocks the sooner the faster the battery dies.


Okay that was late October, early November I had to suffer through crippling attacks again.  Suffered through being bed-ridden from the extreme pain and going through expensive medication like it was water. I still am incapicated til the battery pack is replaced.


The thing I do know is once the device was set to the right levels, I was nearly migraine attack free.  I was feeling great physically and emotionally.  And that this ONS device actually worked!  That was the most surprising thing.  After the adjustments I hadn't really thought about the device at all, I was just out living my life again.  I wasn't having to alter my behaviour or actions to avoid having an attack.  I was my old self again, I was nice and in control of my impulses and feelings.  As soon as the ONS device battery started to die the disease reared its head with a vengeance, making my life miserable and isolating me again.


So all I can say is I am glad I volunteered and was accepted for this clinical study.  I'm glad that I had this experimental device implanted in my brain and chest and I cannot wait to get the battery pack replaced in 8 days.  I'm ready to get back to living normally again.


My advice for other chronic migraineurs is that if the disease continues to worsen like mine did there are new treatments on the way!  I believe that the ONS implant will be approved by the FDA early this year as this was the last study they needed to prove that the device worked for mild case as well as for extreme cases.


I advise all migraineurs to stay on top of the disease and the attacks.  If you have medications to prevent the attacks take it as prescribed and if you have an abortive medication take it as soon as you feel a headache coming on.  If the medications aren't working or are creating side-effects that are as bad as the migraine attacks then insist that your neurologist change the medication.  If you don't have a neurologist who is up to date on the latest information regarding migraine disease then find one who is.  Give serious consideration to the new long term treatments that are coming out now.  And even if you have a neurologist that you trust in, you still need to do your own homework and research.  Papers on new studies and courses of treatment are being published all the time.


If you don't already get the National Headache Foundation (NHF) newsletter then subscribe and read it.  Neurologists and researchers are finding all sorts of new and interesting data about migraine disease and approaches to treatment.  In the latest newsletter they have devoted considerable space to discussing what happens or what you should do (with your neurologist) if treatments fail to work for you.  It's really useful information to have available. There are also testimonials from other migraineurs about how the disease is adversely effecting their lives and how they are dealing with the "invisible disease".


There is one other thing I wanted to say - after I got the implant but before it was turned on (when I was still a placebo patient) I had my normal quarterly appointment with my regular neurologist.  I told her that I had gotten the implant (I had mentioned the study before I got approved for it as well).  She was extremely skeptical and asked me if it was working for me.  I told her that I didn't think it was working for me but that I was scheduled to go back the see the study people in a week to find out if the device was on or not and to have it adjusted if indeed it was on.  She poo-pooed the entire thing saying that she thinks that I was proof that the ONS device didn't work for people with Chronic Intractable Migraine Disease and that for people with lesser forms of the disease it might work but it was too extreme and radical a prospect to be reasonable used.  I left her office feeling like I had seriously fucked up since my neurologist is a top-rated specialist in the treatment of migraine disease.  However, as I said my unit wasn't turned on and when it was I started to and continued to get relief from it (until the damn battery died).  In August 2009, when the device was still working I had another quarterly follow-up with my neurologist and she was shocked.  To her I looked totally different, I told her that the last time I saw her the device wasn't on and since then it had been turned on and adjusted to suit me and that I hadn't had the chronic constant migraine attacks and that my other symptoms were under control and that when I did get an attack that two Tylenol or if it was a little worse 1 vicodan worked to end the attack.  She was speechless.  We talked in her office for nearly an hour (my appointments are usually a fast 15 minutes).  She wanted to see where the battery pack was and feel were the leads went into my neck up to my brain.  She asked me tons of questions about what it felt like, how I thought it was resolving my migraines and whether I would recommend it to other Chronic Migraineurs.  I told her that she should ask her office mate and fellow neruosurgeon because he did the surgery and is getting the results of the study now.  I told her that I cannot and will not tell other chronic migrainuers to do what I did but that it was worth investigating whether the treatment was right for them.  That there are criteria that I was not fully aware of in to be of the study or to get the implant - I just knew that I met the health and mental capacity criteria of the study to be accepted.  She was very pleased that despite her negation that I had been proactive to pursue treatments that could help get the disease under control.


I have seen this same neurologist since the battery died and she now believes completely that this ONS device is a valid and rational method of treatment for my level of disease.  She was pretty disappointed that the battery had died so soon but was glad to hear that it would be replaced with a rechargeable unit and that future implantees would automatically get rechargeable long term units.


I am sorry that this post is so long and I am sorry that there are questions that people have asked that I haven't answered but I was trying to get my life back.  But that's no excuse, so if youhave questions that I haven't addressed or there is information you want from me just post your question or if you want email through this site.

Update on my ONS implant

Posted By wackdoodle on Mar 4, 2009 at 4:42PM

In case anyone is interested in what's happened since I got the Occipital Nerve Stimulator implanted in my skull last month, here's my update.

I've had ONE migraine since having the surgery. That one migraine was induced by the anesthesia so in my book it doesn't count.

I've had two sinus headaches which were very mild but freaked me out because I forgot what it feels like to just have a regular headache that comes and goes naturally.

Any side-effects? None that I can tell. I "think" that I occasionally feel a jolt that comes from the head and shoots down my body but then again I had those sorts of jolts prior to the surgery. But since I don't have a migraine I notice everything. Like today I have a stomachache probably the red wine that was in my spaghetti sauce. Alcohol and my altered stomach do not mix well.

Other possibly side effect - the wire that runs from behind my ear and down my neck appears to be tightening. So I have to remember to really stretch my neck and not favor that side so that it tightens and I cannot hold my head straight.

The other thing is that the power generator in my chest is big and bulky. The area is tender and very obvious and the incision is healing very slowly (the incisions on my head are completely healed and starting to disappear). Last week I slept on my left side and the box shifted a bit and it hurt like a b*tch. And occasionally I whack the thing and end up scratching off my skin or bruising myself there. The skin that goes over the generator is almost completely numb or it's just really slow in rely pain signals but the muscles and tissue under the generator immediately tell me that their unhappy with a particular movement or bump.

So again I'm in a double blind study and no ones knows for certain that the unit I have is "ON" or not, but it feels like it's "ON" I feel a tingling sensation when I modulate it and best of all no migraines, no vertigo, no unexplained nausea, no visual issues - so it seems to be working for my chronic intractable migraines.

Updated pictures of my post-op head - not for the skimish.

Posted By wackdoodle on Feb 18, 2009 at 6:00PM

OK I had the ONS surgery just over 6 days ago. Been feeling from "really good" to "just eh OK" since the surgery. Mainly just fatigue and a twinge of pain either from the wire inside my neck or from the box inside my chest.

But...BIG BUT, I've not had a single migraine (save the anesthesia/zofran induce one). I even turned on the device and per the instructions from the study I've been using it everyday, playing with the settings and seeing if I got a live box. Well I think I got a live box cause I feel the impulses when I turn the device on. And the coolest thing is I wake up in morning, go through my entire day and then go to sleep at night and there's no migraine, no headache - just peace and calm. The one night I thought I was getting a migraine I couldn't find the remote device in the dark to change the impulses in the ONS in my head so I started to panic. Really panic couldn't breathe just starting moving around really fast trying to find the controller. Finally I turned on the light and there it was right next to me on the bed. I changed the impulse signal and the strength and went back to sleep - no migraine.

So here are some pictures of my surgical wounds and my attempt to re-bandage my head afterward and of the controller.
Oh yes people have been asking me left and right what the controller is when I have to take it out to use it. I was at the dentists office about to get a molar pulled and I had the controller on my chest adjusting the impulses and the dentist wanted to know what it was. So I told first the female dentist then the male. The both suffer from migraines too and wanted to know if the implant was working - I had to admit that it was or at least I think it is. Other migraine sufferers have come out of the woodwork and asked me about it to. Each of them relieved that this ONS implant seems to be working for me and that something like this could soon be available if they ever needed it.

Tried to post post-op pictrues and quick blog

Posted By wackdoodle on Feb 12, 2009 at 3:27PM

and I did only it just didn't post here like I wanted.

If your want to see my head and chest 8 hours post-op and pre-op on my page it's the previous blog.

more updates later...

oh it the bog ended up in my "My photos" section

Tagged with: surgery done, ONS, blog

Surgery is scheduled.

Posted By wackdoodle on Feb 5, 2009 at 1:11PM

So next Thursday November 12th I will be have my ONS surgery.


It will pretty much be an all day affair while they position the electrodes and wires then program the battery and test it.

Should be interesting.

Tagged with: ONS, chronic migraine, surgery

Another article on ONS - Occipital Nerve Stimulation

Posted By wackdoodle on Feb 4, 2009 at 1:38AM

Found another good and more recent article on ONS.

From the website: docguide.com

Occipital-Nerve Stimulation More Effective Than Medical Management in Patients With Chronic Intractable Migraine: Presented at AAPM

By Emma Hitt, PhD

HONOLULU -- January 30, 2009 -- Occipital nerve stimulation (ONS) may be more effective than medical management in patients with intractable migraine headaches, according to findings from the first randomized trial of ONS in this setting.

According to the researchers, led by Joel Saper, MD, Michigan Head Pain and Neurological Institute, Ann Arbor, Michigan, 3% to 14% of patients with episodic migraine develop chronic migraine characterized by headache for more than 15 days per month.

To evaluate the efficacy of ONS versus medical management, Dr. Saper and colleagues conducted a multicentre, prospective, randomized, single-blind, controlled-feasibility study with a total of 110 patients with intractable chronic migraine according to International Classification of Headache Disorders criteria.

Subjects received diagnostic occipital nerve blocks, and responders were randomized in a 2:1:1 ratio into 3 treatment arms: adjustable stimulation (AS), preset stimulation (PS), and medical management. The first 8 who failed the block formed an ancillary group and also were offered ONS treatment.

Of the total group, 66 completed migraine diaries during the 3 months of follow-up. These patients had regularly experienced 15 or more headache days per month that were not responsive to conventional medical therapies.

At 3 months, the AS group showed a 27% reduction in headache days per month from baseline, the PS stimulation group showed a reduction of 8.8% (P = .132 against AS), and for medical management it was 4.4% (P = .058 against AS).

With respect to overall pain intensity, AS showed a 1.5% decrease from baseline, medical management showed a 0.6% reduction from baseline (P = .092 compared with AS), while PS showed a 0.5% decrease (P = .076 against AS). In addition, the overall pain intensity decrease was 39% with adjustable ONS and 0% with medical management (P = .003).

Rates of response at 3 months were 39% for AS, 6% for PS (P = .032 against AS), and 0% for MM (P = .003 against AS), and 40%.

No unexpected adverse events were noted. Lead migration occurred in 12 of 51 (24%) subjects. The most frequently reported non-device related event was worsened migraine. Occipital nerve block response did not appear to be predictive of response to ONS.

"Since lead migration was a common AE we must attempt to improve on the implanting technique," Dr. Saper said in an interview.

"Improvement and downsizing of the stimulator and battery pack are among the technology improvements needed," he added.

"Over time, if this looks like a viable and practical treatment, we will develop criteria in the guidelines of care," Dr. Saper said.

"The findings thus far are encouraging, and we hope that this approach will be available and effective for our most challenging cases. More studies, though, are necessary to determine overall efficacy and safety," he added.

Funding for the study was provided by Medtronics.

[Presentation title: Occipital Nerve Stimulation (ONS) for Treatment of Intractable Migraine Headache: 3-Month Results From the ONSTIM Feasibility Study. Abstract 155]

So now I'm a lab rat. YEA!

Posted By wackdoodle on Feb 4, 2009 at 1:15AM

Okay so Tuesday I met with the neurosurgeon and the clinical psychologist to receive final clearance to be one of the 150 people in the final clinical trial for the Occipital Nerve Stimulator (ONS) which is for people with chronic (intractable) migraine. If the results of the study are consistent with the previous trials then this device could receive FDA approve within two years and available to other chronic migraine sufferers. The ONS device is not a cure but a preventative measure to stop migraines in their tracks. It is similar to neurostimulators already in use on Epileptics and Parkinson's patients only the leads are placed in a different area of the brain..

So now I'm waiting for the call on when my surgery will be to receive the implants,wires and battery. It could be as soon as this Thursday but more than likely (I hope) no later than next Thursday. The neurosurgeon believes that I am a good candidate and that this device will stop my migraines in their tracks without medication. But I did ask if there have been any findings about whether the device stopping the headache portion of my migraine disease will stop the other symptoms of the disease as well. Things like the vertigo, nausea, the aura, the vision problem, the confusion and balance issues. He said honestly no one has ever asked that question and that he is unsure whether those would be resolved as well. Oh one funny thing - the neurosurgeon did poke me in the back of the head with a pointed stick. Very funny. Then he said that they would have to shave only a small portion of the back of my head and that it will take about three weeks for me to be fully healed and recovered from the procedure.

So I was looking for some info to post about what specifically the Occipital Nerve Stimulator is and what they're going to do to me. And I found several reports on it but this is the easiest to understand. This article is by Terry Roberts who is a nurse and migraine sufferer. She runs or contributes to several migraineur websites. The article is long but informative.

Occipital Nerve Stimulation for Migraine and Headache Prevention - 2008 Update

by Teri Robert, Lead Expert

The use of occipital nerve stimulation (ONS) for the prevention of Migraines and headaches is in clinical trials and has been of great interest to those sufferers with intractable Migraines and headaches that do not respond well to treatment. The first clinical trial data has now been released, shedding some light on how well the treatment works and what may lie ahead.


What is occipital nerve stimulation (ONS)? ONS involves delivering a small electrical charge to the occipital nerve to prevent Migraines and headaches in patients who have not responded to medications. ONS is not effective for all patients, and a trial of occipital nerve block injections is often a good indicator of ONS suitability for specific patients.

The basic hardware of the ONS systems consists of a lead with electrodes and contacts which is connected to a separately implanted impulse generator by a wire. 1

Dr. David Dodick has summarized the progress of ONS research to date (June, 2008):

"Over the past 6 years, occipital nerve stimulation has emerged as a potential treatment option for a variety of different intractable primary headache disorders... Open-label prospective studies and case series evaluating the efficacy and safety of ONS in patients with medically refractory chronic migraine, chronic cluster headache, and hemicrania continua have been reported (refs). The favorable results from these preliminary open studies have prompted three randomized, sham-controlled studies in patients with refractory chronic migraine (PRISM NCT00286078 (Advanced Bionics), ONSTIM (Medtronic Inc.), Advanced Neurostimulation Systems). Results from these studies are anxiously awaited and expected over the next 24 months."1

Neurostimulation, including ONS, is not yet FDA approved for the treatment of Migraine disease or other headache disorders, but the clinical trials are progressing. The biggest of these clinical trials is the Occipital Nerve Stimulation for the Treatment of Intractable Migraine (ONSTIM) sponsored by Medtronic, which included patients who have regularly experienced 15 or more headache days per month that were not responsive to conventional medical therapies.

ONSTIM Study Details:
In the study...

* Thin lead wires were placed under the skin near the occipital nerves, which arise from the spinal cord and branch out across the back of the head carrying sensory signals from that region to the brain.
* The leads were connected to an implanted Medtronic neurostimulator that delivered controlled electrical pulses to the occipital nerves.
* Patients were randomized to three groups to receive: either
- a neurostimulator and have the ability to control the level of stimulation
- a neurostimulator as part of a device control group
- only standard medical management instead of an ONS implant.
* A positive response was defined as at least a 50 percent reduction in the number of headache days in a month, or a reduction in the pain intensity of at least three points on a standard 0-10 pain scale.
* Slippage of lead wires was the most common adverse event.
* In addition to evaluating the efficacy of ONS therapy, the ONSTIM trial was designed to follow patients out to three years related to safety.

Dr. Joel Saper, founder and director of the Michigan Head Pain and Neurological Institute, Ann Arbor, Mich., and principal investigator for the ONSTIM study, stated,

“The ONSTIM results suggest that occipital nerve stimulation, or ONS, may be a promising therapy option for individuals who have not had success in treating their chronic migraine and as a result are living with the painful and often debilitating symptoms... While ONS for chronic migraine requires additional clinical evaluation, our early experience in this study is encouraging and indicates that ONS could possibly help some chronic migraine patients who have exhausted other treatment options.”3

Summary and Comments:

Early results of the ONSTIM trial look promising for patients with intractable Migraines and headaches. Additional ONS studies are ongoing, and their results are anxiously awaited.

Patients considering ONS treatment should be aware of some key points:

* ONS is not appropriate for all patients.
* Occipital nerve block injections may be a good predictor of whether OSN is suitable for individual patients.
* ONS is not yet FDA approved for Migraine and headache prevention, but may be prescribed off-label (as many medications are).4
* Since ONS is not FDA approved, most insurance companies will not pay for this treatment.4
* Some doctors are coding insurance forms for conditions other than Migraine or headache in order to get insurance company approval and payment. It should be noted that this is an illegal practice that could result with patients having an additional condition (that they don't have) listed on their medical records. If ONS is approved based on a condition the patient does not have, insurance companies can rescind payment and/or take legal action.4 A leading Migraine specialist who wishes to remain unnamed commented, "It's a sad state of affairs. A less trained doctor may misdiagnose a chronic Migraine patient as having another condition, say occipital neuralgia, and with that misdiagnosis, get the insurance company to pay for ONS. Another doctor may knowingly falsify the forms and list occipital neuralgia as the diagnosis to get ONS covered by the patient's insurance. Yet the doctor who correctly lists the diagnosis as chronic Migraine cannot get the insurance company to pay. It's a case where diagnosing correctly and completing the forums honestly results in the treatment not being covered by most insurance companies.5

It should also be noted that, contrary to the sensationalized headlines coming from some mainstream media outlets, ONS is not a cure for Migraine disease. It can be an effective preventive treatment for some patients, but it addresses only some Migraine triggers, not all. Thus, patients using ONS may see a reduction in Migraine and headache frequency, but not a complete cessation of Migraines and headaches.


1 Dodick, David W., MD. "Occipital Nerve Stimulation." Platform Presentation. American Headache Society's 50th Annual Scientific Meeting. Boston. June 27, 2008.

2 Goadsby, Peter J., MD. "Neurostimulation in primary headache syndromes." Expert Rev. Neurotherapeutics 7(12), 1785-1789 (2007).

3 Press Release. "Medtronic Announces First Clinical Data on Occipital Nerve Stimulation for Chronic Migraine to be Presented at American Headache Society Meeting." Medtronic. Minneapolis. June 27, 2008.

4 Interview with Sheila Brown, FDA Center For Devices and Radiological Health. June 10, 2008.

5 Interview with unnamed leading Migraine and headache specialist. June 28, 2008.

© Teri Robert, 2008.
Last updated July 7, 2008.

Any thoughts out there or questions for me about why I'm going to do this? Oh once again, I have well over the 15 migraines a month. Last count for January -31 days in the month, 25 of those days I had migraines which inhibited my activities and required use of medication. So far for February I'm batting 5 in 4 days.

Once the procedure is done -I'll try to take photos of what it looks like etc.

Clinical Trial sure I'm game.

Posted By wackdoodle on Jan 16, 2009 at 4:47PM

So I was lying in bed with a migraine waiting for the medication to kick in and this commercial comes on "Chronic Migraines? Would you like to be part of a Clinical Trial or study to help find a treatment? If so call 867-5309 (not really the number)."

So I did. I was surprised some one answered the phone. She asks me if I am a migraineur. Yeah.

How frequently do you have migraines?
Better question would be when do I not have a migraine. At this time, at least 6 to 7 days a week. Sometimes, I get a migraine that just doesn't go away for several weeks and I have to go to the hospital.

What medications have you tried?
I've taken Imitrex, Zomig, Maxalt, Frova and others that I cannot remember the name of and now Relpax. Narcotics I've been given - viciodan, depakote, percocet, and worse. Preventatives- atentolol, propranolol, years and years of Topamax (which has ruined my brain function), and most recently effexor which caused me to gain 30 pounds in 2 months.

What do you take now and how frequently?
Relpax 80mg and Valium and for nausea and vomiting- promethazine and for severe vertigo meclizne. At the ER they throw everything they have at me.

Have you had MRIs, CTScans etc?
Yes, every 3 to 4 months.

Anyone else in your family suffer from migraines?
My mom but hers may have been because she had a huge brain tumor. My mom's sisters (all six of them), my mom's two brothers, my sister, her two sons, my brother's two twin daughters, my oldest brother now says that he occasionally gets a really bad headache and vomiting but he didn't know it was a migraine, about 10 of my cousins, and one cousins migraines are so bad that she lost her internship at USC medical center because her migraine triggered either a TIA or seizure while she was attending to a patient.


How long have you suffered from migraines or headaches?
Since childhood. I remember that complaining to my mom that I had a headache and feeling sick to my stomach often. I remember that after a while the St Joseph's baby aspirin that I took at age 5 didn't kill my headaches when I was six so my mom gave me my first adult strength Tylenol. After that I always got Adult Strength Tylenol as a child.

Have your migraines changed and increased in frequency?
Yes, I guess so. I recall that I frequently got headache but Tylenol usually got rid of them. If the Tylenol did not work and my eyes hurt then a dark quiet room helped. Then after I turned 18 a dark quiet room and Tylenol did not work but I just toughed it out and vomited and tried to sleep through the pain. Then at 24 I was still having regular level headaches but once or twice a year my head would hurt so bad that I wished for death. I wished that I had a big metal mallet and that I could beat my own head in to just stop the pain. But my friends would take me to the ER and the ER doctor said "migraine" for the first time ever. So I went to my personal doctor and she gave me preventative medications. Those didn't work so she gave me abortives and a different preventative. They worked twice then not again. So my personal doctor sent my to a neurologist. The neurologist for the last 10 years or so has tried to prevent the migraines with different preventatives and they work for a while at decreasing the number of migraines but I still had them and when I had them they were 10x worse and lasted longer than 1 day. So now my neurologist is at a complete loss. And she has recommended that I quit the job I have because its just not safe for me to do that job. The other thing she said is I may have to go on permanent disability until something comes along to help control the migraines.


Can I have your name and address?
Sure. (I give it)

Let me tell you about the study. We are in the final stage of testing a neuro-stimulator implant to help chronic migraines.

She then explained what the study entailed.

Oh yeah I read about this in the August 08 Scientific American (I posted the link to the article here). I didn't think that it was really real and ready to be marketed to the public.

Well almost. This study is the last hurdle, the one to present the finding to the FDA for approval for widespread use in Chronic Migraine suffers. Those who's lives are being adversely effected by the migraine and associated problems.

Would you be interested in coming to see us and seeing if you qualify for participation? Sure. When?

The appointment was made. I went got the information and started the headache diary. 34 days of daily entries regarding whether or not I had a migraine. If I did how bad was the pain on a scale of 1 to 100? Did I have any sensitivity to sound, light, was I dizzy, nauseated? If I had a migraine what medications did I take and how much? And finally how long did it take the migraine to pass?

So for 34 days I entered the info. And at the end the record indicated that 26 days out of the 34 days I had migraine pain that required medication of a pain level of 50 or better.

Hey I qualified.

So now I go to see the neurosurgeon who will do the implant. He is going to decide whether I am physically able to withstand the rigors of the study and the surgery.

After that I see the studies Psychiatrist. If both agree that I can handle it then two days later I go in for brain surgery and get the implant.

Now the implants which are placed in the brain stem at first will be temporary then if all goes well they'll be replaced with permanent implants. I'll also have a pacemaker like thing implant under my collarbone. It's the switch to turn on the stimulator. Basically the device will administer a low volt shock to the nerves in my brain whenever I start to feel a migraine or headache coming on. The shock will essentially smack down those nerves and tell them not to become overstimulated and not to turn on the pain receptors that trigger migraine head pain.

Coolness. Now after the first implantation the device may or may not be turned on. It's a blind study - so for a specific period some people's simulators will be turned on so they can activate it and others won't be turned on but they will be told it is and instructed on how to use it when a migraines strikes. After the first few weeks of the study everyone's stimulator will be turned on. If it works for the participants and we want to keep it then we get to keep it for free and we get continued free medical care and replacements for the stimulator as needed for life. If you don't like having the thing in your head then they take it out and no harm no foul.

However, from what I've read from the previous study the researchers have found something really odd. So some people's simulators are turned on and some people's aren't but the simple action of having the implant placed into the brain stem in the nerve cluster seems to stop the migraine pain for the half that had units that were not turned on. And even after the unit was turned on people reported no or minimal migraines and that the stimulator when used stopped the migraine progression. The previous study participants reported that they were able to resume active even strenuous lifestyles again with little or no migraine pain.

Wow. It's not a cure but a measure of control. Something interrupting the nerve signals and the pain impulse for the migraine attack. Other pain receptors still worked fine - like if they cut themselves or stubbed a toe they still had pain. Adverse effects were occasional unasked for shocks or misfires of the implant and infection at the implant sites or the need for the replacement of the chest unit sooner than expected.

I hope this works as well for me. So if all goes well by mid-February I'll be able to report if I got the implant and if I'm feeling any better.

I'm scared only in the respect that their dealing with my brain and its already damaged and as yet we cannot get replacement brains. So if something goes wrong and its damaged further then I am truly screwed. But aside from that I'm excited and hopeful. I'm excited that this may really work like the implants they started using on Parkinson's patients and epileptics. Where when the neurologist finds the right area in the brain the disease is controllable. And I'm hopeful that if it works initially that it works forever or that as the researchers hope the stimulator retrains the brain to not become overstimulated and cause migraine pain. Either way I'd consider it a win.

Then the others win is that this procedure would become available to all chronic migraineurs who do not get relief from preventatives and or abortives. Like my friend Amanda who has gone through the same thing I have but was actually fired from her job because of her migraines and neither she nor her neurologist have any hope that she'll ever have any relief. How great would that be no more migraines because we can retrain our brains not to overreact and trigger pain when there shouldn't be any pain.

It would be nice to smell onions because someone is cooking something not because I'm about to be crippled by a migraine.

off to neuro again

Posted By Erin Wilson on Jan 7, 2009 at 10:13PM

off to the neurologist yet again tomorrow. Will probably have my meds switched around again and that's it.


probably gonna watch The Dark Knight on the way when I'm not napping.

Tagged with: headaches, me