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leftie1
New Member


Date Joined Jul 2010
Total Posts : 10
   Posted 7/11/2010 12:01 PM (GMT -7)   
Hi, I was wondering if anyone can help me. I have had migraines for many years. Then, 2 years ago they didn't go away. I have seen so many drs. I have lost count. I am on so many pain meds. They want me to try the neurostimulation. Has anyone tried this for migraines(headaches) and how is it working.
Thanks,
leftie1

MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 7/11/2010 12:26 PM (GMT -7)   
Hey leftie , Welcome to the Chronic Pain forum , I'm sorry your having such a problem with your headaches . I'm afraid I can't advise you on that but I just wanted to offer my support to you and welcome you . Don't worry I'm sure some of the wonderful folks here will post some info you can use , meantime stay positive and welcome !!! Mikel

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 7/11/2010 12:34 PM (GMT -7)   
Hi Leftie and welcome to Healing Well's chronic pain forum. I am glad that you found the forum, but so sorry to hear of your medical situation. Everyone here has a different story to tell as to why and what caused their CP, but one thing we all share is pain and you are not alone. I know you stated that you had been tried on many different types of medications for your headaches, but I would like to ask, if you have tried Methadone. The reason I am asking is I know of several people on Methadone for headaches that nothing else would touch. Methadone is one of those meds that should be used as a last resort and only be used for long term only.

We have several people here at the forum that have the SCS implants and the subject of the SCS has been discussed a lot. Please use our search at the top of the page and type in SCS and you should get a wealth of information on it. It is quicker that way, rather than waiting on someone to pop on that has one. It is usually quieter on the weekends so it may be a while before anyone comes along.

Again, I wanted to welcome you aboard and keep posting and letting us know how you are doing. By the way, I deleted your second post since it was identical to this one, felt like you may have hit the submit button twice, lol.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 7/11/2010 12:53 PM (GMT -7)   
Hi leftie and welcome.. I am a leftie too, lol, and have headaches. Oh do i have headaches. My story is long but i can shorten it to having seen every kind of doctor possible, tried every kind of medication possible and done every form of treatment out there. It's been ten long years searching and it doesn't seem that there is an answer for my pain. My headaches are bilateral temples, always the same and always severe. So now I am trying to learn to cope with my pain. I have had all the workup done for tmj as well, fixed that and still have constant headaches. It's a tough battle which can only be done one day at a time. Thank God for my superstar hubby!!! I am sorry that you too are suffering from headaches. I find it just consumes me and how can i do anything when my head is killing me. I don't know about the stimulators for headaches. I have tried to find out about them here (i live in Canada) and it doesn't seem available where i live or so they tell me it is not an option for me. No one can diagnose me. I know one young lady here with eye pain who just had her stimulator inserted. Her name is Skeye. I am sure she will be posting later this week. Her surgery was Friday.
Where do you live Leftie.
I am sorry I am not much help but I can offer you my support and be understanding of your pain.

Take care
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since 2000.
 
           


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 7/11/2010 12:54 PM (GMT -7)   
Oh by the way there is also a forum here for migraines/headaches that you can look up.
Maybe you can find some answers there.

Good luck and hope to hear from you again.
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since 2000.
 
           


catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 7/11/2010 1:45 PM (GMT -7)   
hi leftie
welcome to the group but sorry we had to meet this way. I'm one of those with a Supraorbital nerve stim and I'm sorry to say if I had a choice I would not have had one implanted. Its been 5 years now and the pain is worse than before and I'm taking more meds than I was before I had the implant. I went through the trial implant and thought it was successful , then waited a month for the permanant implant and thought my problems were solved. I thought there had been a significant reduction in the pain. Sometimes I wonder if I was just trying to convince myself that my pain was better because I wanted it so much to be true. The pain now radiates throughout my entire head and continues to worsen. There is not a day when I'm not in pain with a rating of 8/10...thats a good day. I would advise you to do all the research, talk to as many people as you can who have a cranial implant and just keep trying.
I wish you best of luck and hope to hear from you soon.
Catahoula
sick and tired of being sick and tired


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/11/2010 8:49 PM (GMT -7)   
Hi Leftie,

I'm the one tmjpain mentioned who just had a stimulator implanted for chronic eye pain. Two days ago, after going through a one-week long trial, I had a permanent stimulation system implanted. Like Catahoula, I have an electrode on the supraorbital branch of the trigeminal nerve, however, I also have an electrode placed on the infraorbital branch of the trigeminal nerve. So, essentially I have electrodes both above and below my orbit.

Obviously, my pain is somewhat different than yours, but there probably are similarities. My pain resides deep behind my right eye.

The stimulator covers an area much larger than my eye. The upper electrode covers my entire forehead, temple, and top of my skull, as well as the upper half of my eye & eyelid. The lower electrode needs a bit of tweaking in it's programing to increase it's range, but right now it covers areas under my eye, and the lower half of my eye/eye lid. The lower electrode was placed somewhat lower during the trial & in it's previous position, it also covered much of my check & the side of my face.

My stimulator is a Medtronic Restore Ultra. The use of stimulators in the treatment of head pain is fairly uncommon in general (compared to its use in spinal cord stimulation), however, it is becoming more frequent. Make sure that your doctor is familiar with using & implanting this system for head & face pain, not just spinal cord stimulation.

Depending on where your migraines are, there maybe be several different options for you in terms of electrode placement. I am no expert, but I believe that the trigeminal nerve (as in my case) and the occipital nerve are the nerves that are used to treat chronic headaches.

A 50% reduction in pain is considered a successful trial. For me, the stimulator does not help all the time, but when it does, I do get significant (about 50%) relief. This is the most relief that I have gotten from any medication or treatment & I have essentially exhausted all other options.

The stimulator is easy to operate & easy to "try out." If you & your doctor think that this device is worth trying, then you can set up a trial period, in which you will have a temporary external stimulator to fiddle with. If you like it, then you can have it permanently implanted under the skin. Although my electrodes are in my face, they are invisible to the naked eye. As are the wires running down my neck, and the battery in my chest (and I am thin young woman).

You can find more about my experience with the stimulator implantation & stimulator trial in some recent threads (including one entitled "update - facial stim trial," and one entitled "~Skeye"). I'd be happy to talk with you more via email, you can find my address listed in my profile.

One thing of note: I did have a very hard time getting my insurance to approve the stimulator trial & implant. It took 6 mo of appeals and an in-person hearing before I finally got authorization for the procedures.

I hope that you find some of this helpful!

hugs,
Skeye

Post Edited (skeye) : 7/11/2010 10:31:46 PM (GMT-6)


leftie1
New Member


Date Joined Jul 2010
Total Posts : 10
   Posted 7/12/2010 10:51 AM (GMT -7)   
Thank you for your response. Yes, I have tried Methadone and it did not help. They have tried everything and so now they say all that is left is the SCS. I hope all is well with you ( or as best as can be-that's all we can say when we get to this point) And yes I did get a response from Skeye. Thanks again
Leftie1
straydog said...
Hi Leftie and welcome to Healing Well's chronic pain forum. I am glad that you found the forum, but so sorry to hear of your medical situation. Everyone here has a different story to tell as to why and what caused their CP, but one thing we all share is pain and you are not alone. I know you stated that you had been tried on many different types of medications for your headaches, but I would like to ask, if you have tried Methadone. The reason I am asking is I know of several people on Methadone for headaches that nothing else would touch. Methadone is one of those meds that should be used as a last resort and only be used for long term only.

We have several people here at the forum that have the SCS implants and the subject of the SCS has been discussed a lot. Please use our search at the top of the page and type in SCS and you should get a wealth of information on it. It is quicker that way, rather than waiting on someone to pop on that has one. It is usually quieter on the weekends so it may be a while before anyone comes along.

Again, I wanted to welcome you aboard and keep posting and letting us know how you are doing. By the way, I deleted your second post since it was identical to this one, felt like you may have hit the submit button twice, lol.


leftie1
New Member


Date Joined Jul 2010
Total Posts : 10
   Posted 7/12/2010 10:55 AM (GMT -7)   

Thank you for your response. I have heard from Skeye. I have the same problem that no one can diagnois me either. I have been to so many drs. that I am tired of going to them thinking they will say the same thing. My dr. says this is the last resort. Thank you again.

Leftie

tmjpain said...
Hi leftie and welcome.. I am a leftie too, lol, and have headaches. Oh do i have headaches. My story is long but i can shorten it to having seen every kind of doctor possible, tried every kind of medication possible and done every form of treatment out there. It's been ten long years searching and it doesn't seem that there is an answer for my pain. My headaches are bilateral temples, always the same and always severe. So now I am trying to learn to cope with my pain. I have had all the workup done for tmj as well, fixed that and still have constant headaches. It's a tough battle which can only be done one day at a time. Thank God for my superstar hubby!!! I am sorry that you too are suffering from headaches. I find it just consumes me and how can i do anything when my head is killing me. I don't know about the stimulators for headaches. I have tried to find out about them here (i live in Canada) and it doesn't seem available where i live or so they tell me it is not an option for me. No one can diagnose me. I know one young lady here with eye pain who just had her stimulator inserted. Her name is Skeye. I am sure she will be posting later this week. Her surgery was Friday.
Where do you live Leftie.
I am sorry I am not much help but I can offer you my support and be understanding of your pain.

Take care


leftie1
New Member


Date Joined Jul 2010
Total Posts : 10
   Posted 7/12/2010 11:21 AM (GMT -7)   

Sorry to hear that it's not working for you. What is the SCS for and where did they put the implant? I have headaches(migraines) all over my head. Light & sound bothers me. The dr. is saying it's in my neck. They did find a bad disk and went in and repaired it with a plate and a bone, that didn't help. The dr. said this is my last resort. The video I received says that you can't do any bending, twisting, lifting for 6-8 wks. but doesn't say after that. Also they said some equipment I wouldn't beable to be around. That would be hard for me since I live on a Ranch. Please email me and let me know what you can on this. I would really appreciate it. Thanks again.

Leftie1

catahoula said...
hi leftie
welcome to the group but sorry we had to meet this way. I'm one of those with a Supraorbital nerve stim and I'm sorry to say if I had a choice I would not have had one implanted. Its been 5 years now and the pain is worse than before and I'm taking more meds than I was before I had the implant. I went through the trial implant and thought it was successful , then waited a month for the permanant implant and thought my problems were solved. I thought there had been a significant reduction in the pain. Sometimes I wonder if I was just trying to convince myself that my pain was better because I wanted it so much to be true. The pain now radiates throughout my entire head and continues to worsen. There is not a day when I'm not in pain with a rating of 8/10...thats a good day. I would advise you to do all the research, talk to as many people as you can who have a cranial implant and just keep trying.
I wish you best of luck and hope to hear from you soon.
Catahoula


catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 7/12/2010 12:09 PM (GMT -7)   
The implant is in my forehead attached to the right supraorbital nerve. The leads are buried behind my right ear and then down to the rechargeable power supply/controller than is implanted just below the collarbone on the right side of my neck. I believe I was also told no bending etc for 1-2 months simply for the scar tissue to grow around everything implanted. I can still move the controller around as sometimes it has been in the way for mammograms etc. I also had a trial nerve stim on the occipital nerves in the base of my skull. This time I did not go ahead with the permanent implant( though they did try to convince me to even sending me home twice to "think about it" again when I said no and wanted the trial taken out). I was told not to go around magnetic object like MRI's . I have set off alarms when walking through security at the airport as well as the supermarket. Just this past Feb. I started with a new pain doc ( I left the old one, the one who did the implant, after he told me I would just have to learn to live with the pain) who started a series of trigger point injections as well as sending me to physical therapy 3x's a week for 2 months. She has also done the superorbital nerve blocks, supratrochlea nerve blocks, auriculotemporal nerve blocks ( all around the right ear and right side of the neck). We tried these every 3 weeks for 3 months. Unfortunately sometimes they worked offering some relief, others, no relief at all. A lot of it depends on hitting just the right spot with the needle.
I was an avid bike rider but was told to stop to eliminate any possibility of damaging the implant should I fall and hit my head. That is a great loss as riding is a great stress reducer and now I can only look at the bike, can't really do anything to relieve stress anymore.
I would suggest you get another opinion before you make any decisions. I had the implant done at a major teaching hospital which I thought was the correct route to go thinking I would have the best minds all working together as a team. Didn't work that way. I found out that after one doctor couldn't help( the neurologist) she sent me on to another and they never compared notes. There was no teamwork involved.
Now I am seeing a pain doc at my local hospital and already she has referred me to a new neurologist and they work as a team. She was also getting weekly reports from the physical therapist. All have pretty much agreed to do nothing except keep me on the embeda and norco until they get all the records from all past doctors I have seen and as a team will decide the next course of action. All I can do is hope that something will come of this as the pain really increases with the summer heat and I have been pretty much bed bound for the past month.
I don't know if any of this helps but am more than willing to keep chatting if there is anything I can do for you.
take good care and I pray for painless days for you.
catahoula
sick and tired of being sick and tired


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/12/2010 12:24 PM (GMT -7)   
Leftie,

I just saw that you live on a ranch & are concerned about the stimulator interfering with equipment & your work. I had similar concerns, as I currently work as a veterinary technician at a country practice & am planning on attending veterinary school in a year & want to work mostly with large animals.

Prior to my permanent implant, I did have a detailed discussion with my Medtronics rep about my concerns. I lift up to 80 lb dogs by myself at work & also handle and restrain cattle, horses, and other large animals. I do have a lifting restriction in place until I heal from the surgery (about 6-8 wks), but afterwords, I should have no restrictions. I was also concerned about possible damage to the stim by being kicked or otherwise pinned by large animals & whether or not the stim would hold up. The Medtronics rep told me that if something like that were to happen, my bones would break long before the stim did (my stimulator battery is in my chest, about 2 in below my collar bone). He said the stim is a "tank," and that you really can't hurt it. You can damage the leads, but not the actual pacemaker.

I was also concerned because you CANNOT have a MRI if you have a permanent stimulation system. However, the rep told me that it is perfectly safe for me to be in the vicinity a live MRI machine (as I might be in vet school), I just can't be the one in the tube. Likewise, other technology really should not interfere with the stim system.

I'd highly suggest talking with one of the reps from Medtronics or Boston Scientific (whatever company your doc uses) & voicing your concerns with them. I've found my reps to be very knowledgeable and very helpful.

Skeye

Post Edited (skeye) : 7/12/2010 1:27:27 PM (GMT-6)


catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 7/12/2010 1:01 PM (GMT -7)   
Leftie- I would also check out the "chronic Pain" forum as well as this "headache". There is another member who has a cranial implant and discusses a comparision between the implant and the pain pump, which she also has. It helps to talk to as many as you can who have gone through the procedure before you decide if there are any other options out there. Best wishes to you.
catahoula
sick and tired of being sick and tired


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 7/12/2010 1:19 PM (GMT -7)   
What kind of doctor does these implants? Is it a neurosurgeon? I am in Ontario and it doesn't seem to be something that is done here. If I have had nerve blocks done and they didn't do much good does that mean that the stimulator is probably not a great option for me??? Just wondering here???
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since 2000.
 
           


catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 7/12/2010 2:51 PM (GMT -7)   
mine was done by an anesthesiologist but I believe than neurosurgeons are performing the surgery as well. Go to goggle( or any website) and look up Sandeep Amin if you want to check out mine.
I can't tell you if the stim is an option for you. I can only say that I was diagnosed with the head pain after shingles in my head and is most probably the trigeminal nerve that is damaged. Sometimes the nerve blocks work, sometimes not. I also haven't had any luck with the seizure meds: topomax, tegretol, keppra, depakote, lyrica, as well as the antidepressants prescribed for nerve pain ( cymbalta, amytriptaline etc.)
I believe if there is a specific location for the pain, the stim may work better than "all over my head" which is my problem. My stim will stop pain on the supraorbital nerve ( which didn't hurt to begin with) but does nothing for the other areas in the head. Its pretty much hit or miss.
All I can do is tell you how it went for me and hope all will do the research and keep on trying. Didn't you try the ketamine transfusions, or am i mistaken?
catahoula
sick and tired of being sick and tired


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 7/12/2010 3:46 PM (GMT -7)   
Suzane,

My implant was done by a neurosurgeon who specializes in trigeminal neuralgia & trigeminal neuropathy. I was referred to him by my neurologist.

Skeye

Post Edited (skeye) : 7/12/2010 4:51:06 PM (GMT-6)


leftie1
New Member


Date Joined Jul 2010
Total Posts : 10
   Posted 7/13/2010 6:40 PM (GMT -7)   
I don't know for sure yet what dr. will do it. My pain dr. set it up for me to meet with St. Jude next week to talk to them. I think they will probably do it. I have also had nerve blocks done with no relief. I have also had nerves burnt in my neck, but they say these are different nerves that they will be dealing with in my neck.
tmjpain said...
What kind of doctor does these implants? Is it a neurosurgeon? I am in Ontario and it doesn't seem to be something that is done here. If I have had nerve blocks done and they didn't do much good does that mean that the stimulator is probably not a great option for me??? Just wondering here???

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