Lessons Learned – Neurostimulator Implant 1.5 Years Later

During the past 1.5 years following the date of the permanent stimulator implant on Dec. 5th, 2o12, I have learned some helpful tips and tricks that I wanted to share.

Because I suffered from daily migraines, I leave the stimulator running at all times at a low setting. This sends a stimulation to the nerves in the front and back of my head where the leads were placed, in the occipital and peripheral regions. The stimulation is very mild. It was recommended by my Neurosurgeon and the St. Jude Medical reps to turn the stimulator program up just enough to where I can feel the stimulation at a comfortable level, and not feel the stimulation unless I’m really concentrating on the fact that it is there and is running. This ensures the stimulation is not distracting and is also less irritating on the nerves.

Learn to adjust the stimulator remote/patient programmer

The programs are added to the remote/patient programmer by the device manufacturer medical reps. A patient does not have the ability to add or completely modify programs, but you can make program adjustments using the remote. The buttons on the remote that I use most frequently are the + and – buttons to adjust the level of stimulation, and the balance key. On my remote this is a grey button with three symbols that resemble crosses. The location of my migraines changes, and I find that the balance key is helpful if I’m experiencing a greater amount of pain on one side or one area. If you make any adjustments to a program, it will not override the program that was set up by the medical rep.

During migraine attacks, adjust/modify the stimulator amplitude

As a first line of defense when I feel a migraine coming on, I use the stimulator remote and increase the amplitude of the stimulator program. This is done using the  green + or – buttons located at the top of the remote. I increase the program as much as I can tolerate. Generally when I increase the amplitude, I can feel the stimulation, but it is a welcome distraction from the migraine pain. I am just careful to ensure that I don’t increase the amplitude too much to ensure it doesn’t increase the migraine pain. I keep the remote close to me so I can make adjustments as needed. If this does not work quickly to alleviate or reduce the pain, I take an abortive or rescue migraine medication before the pain increases too dramatically to ensure that I’m taking as little medication as possible. I generally do not carry the remote with me every where I go. But if I’m experiencing more pain than usual, I do bring it along, and if I’m traveling I always bring the remote along.

Change the stimulator program

For over a year after the permanent stimulator implant, I did not change the stimulator program. The program that was set up for me after my surgery was working perfectly, and as explained above, I made occasional modifications to the amplitude, but that was the extent of it. Just after my first year anniversary of having the permanent implant, I experienced extreme migraine pain that lasted for several days. It was as a switch had been flipped, and I could no longer tolerate the stimulation and it was no longer effective in controlling the migraine pain. I contacted my Neurosurgeon and the St. Jude medical reps and they advised that I make an appointment to have some adjustments made to the stimulator programs. They weren’t entirely sure why I had such a dramatic change in the effectiveness of the stimulator, but assured me that with some program adjustments I would again feel relief. Within 24 hours of having a new program added and adjusting to it, the stimulator was working again as it had been previously.

They further advised that I change the stimulator programs occasionally. This helps to ensure that the nerves get a break from the stimulation. The programs I have are all very similar, there are just slight modifications. Each program is turned on in all four lead areas. The difference in the programs is slight. They made modifications to the frequency of the stimulation. In other words, the stimulation can be sent as a continuous current, or with slightly adjusted currents. This is difficult to explain in words, so I will attempt to illustrate.

Continuous stimulation frequency: ———————————————————————————————–

Modified stimulation frequency: — pause—pause—pause; ———-pause———-pause———-pause; —–pause, pause—-pause, pause—-, etc.

There are many options and the medical reps should be able to recommend options for you based on the feedback you provide when they are adjusting and adding programs to your remote. They can run a report of the programs that you use most frequently, and will make adjustments based on this information. I personally have benefited from very similar programs, so the modifications to frequency have been extremely beneficial to me. For the two programs that I use the most, the medical reps made a copy of each of those programs, adjusting the frequency only. The frequency is set at 60, 40 and 20. I currently have a total of seven programs. The original that was set for me in the hospital, and two additional programs with the frequency modifications/options. My stimulator remote holds up to 24 different programs if needed, but I personally feel that would be overwhelming and unnecessary.

Give the stimulator a break

From time to time I have noticed that I simply cannot tolerate any amount of stimulation. It irritates the nerves and causes the migraine pain to increase. When I experience these sensations, I simply turn the stimulator off completely to give the nerves a break for varied lengths of time. It is trial and error with how long to leave the stimulator off completely. I have never had to leave it off for more than 48 hours, now that I have modified programs and modified frequency I’m able to rotate through the programs and find this is more effective in helping to ensure I can continue to manage the pain.