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This Time Last Year, March 25-31

Glued to the couch because the wires (aka leads) of my occipital nerve stimulator had moved is how I spent this week last year. I had to face answers to big questions I hated to ask.

Lead Migration 2006
The continuing movement of my leads and the associated pain became too much to ignore. This began my deliberations over whether to keep the stimulator or not.

On Asking for Help
I know I need help to cope with my latest nerve stimulator mess, but why can’t I bear to ask?

The Big But
The leads can’t stay where they are, so I’m forced to make a decision about the stimulator: Do I have the leads replaced or do I call it quits and have the stimulator removed?

Does it Even Work?
It’s the ultimate question and I’m not sure I want to know the answer.

A Stimulating Week
The week’s entertainment from the couch.

6 Responses to This Time Last Year, March 25-31

  1. PamC says:

    It’s been a year… you’re not still in a double blind study or anything, are you?

    You may want to talk to Dr. Yu at Swedish Pain and Headache Clinic. He’s goods with the ONS and slipped leads…

    ********
    I wasn’t in a study at all. I had it removed in September after deciding that it didn’t work nor had it ever worked. Thanks for the suggestion anyway. I’ve been thinking about trying the Swedish headache clinic.

    Kerrie

  2. Jason McDonald says:

    It sound like you had leads in the occipital nerves? There is great work going on now where leads are implanted in both the occipital nerves and the supraorbital nerves. I had the procedure done originally in 9/2005 and just had a revision done last week. The pain control I receieved from this was amazing. I used to have chronic daily headaches and it cut my headaches down to one a week (maneagable with rescue meds) and later to one a month. Anyway, if you want to know more, email me.

    ********
    I’m so glad nerve stimulation has helped you. Did you have Botox to “test” whether this type of stimulation would work for you?

    Kerrie

  3. Vicki says:

    Hi. Have pneumonia so been out of commission for a few weeks. Still have been having migraines on top of it. Thanks for letting me complain! I know others get real tired of it, so I try to keep things to myself.

    Has anyone heard of or been to the Michigan Head Pain clinic? My neurologist says that he has had very good luck with recalcitrant migraines who have gone there. He is out of ideas/meds.

    I still haven’t gotten the occipital nerve block. I both want it and don’t want it; it seems so very invasive.

    At least coughing with a migraine isn’t as bad as vomiting with a migraine! A silver lining! (How sick…ha!)

    *********
    Ugh, that sounds awful. I hope it doesn’t linger too long.

    I don’t know much about MHNI except that people on the Migrainepage forums have discussed it in the past. You could get some good information there.

    http://www.mhni.com/default.aspx
    http://www.migrainepage.com/cgi-bin/dcforum/dcboard.cgi

    Kerrie

  4. Katie says:

    I have been silently reading your blog daily. I too suffer from chronic daily migraines – part of a big mess created by a rare and life-threatening medical condition. I have struggled with daily migraines for 14 years now (I am 26) – and it seems like a lifetime. I want to say two things:

    1. Thank you for your blog. While I wish you didn’t have to go through this too, I am glad that you have the courage to put your thoughts into words. I often find myself encouraged by your perseverance.

    2. Above, someone mentioned MHNI (Michigan Head Pain and Neurological Institute). I went there in 2004 – they literally saved my life. Given two weeks to live they made possible the surgery that saved my life. I spent 46 days inpatient there (average is 2 weeks) due to the complexity of my illness. But I saw miracles performed there. Not only on me, but many others as well. For most of the people there, that was their last resort. While MHNI does not make any guarantees, I have personally witnessed that if you truly make an effort to do what they say and desire to follow through afterward you will see improvement. There were people from all over the world. I was the only one that was inpatient who was from Michigan. One lady was from India. It is truly a place of hope. The people who left pain-free (yes, it is possible!) were those who were most dedicated to following their treatment structure. Everyone (at least everyone who is inpatient) who commits themselves to practicing what they are taught there will leave in less pain than they arrived…usually significantly, sometimes completely. While my condition didn’t provide for the ability to be pain-free, I learned so much from my experience there. I would have done it all over again. I believe they are truly one’s best chance for pain relief. There is a long waiting list (which fortunately I was never on because of the urgency of my situation) but it is well worth the wait. I highly recommend them.

    My blog isn’t nearly this great but if anyone wants to visit me the address is: havalittlcourage.typepad.com

    And stay strong. All of you are a blessing to whoever comes in contact with you – we have a unique understanding of life, suffering, love, hope, faith and friendship. Now THAT’S a silver lining. 🙂
    -Katie

    *********
    Thanks for the kind words, Katie. And for sharing your experience with MHNI. It’s great to have feedback about different headache clinics.

    I’m looking forward to reading your blog.

    Take care,
    Kerrie

  5. Christina P says:

    Michigan Head Pain and Neurological Institute can be very helpful. They offer a comprehensive inpatient evaluation of headache as a biobehavioral condition, and focus on more than just medications.

    I have had many patients who benefitted from the experience.

    ********
    That’s great information, thanks!

    Kerrie

  6. Laura B. says:

    I was a patient of the MHNI for 18 years and had migraines since I was an adolesent. My migraines did get much better when I became a regular patient there. Medication is hit or miss when it comes to dealing with migraines and you really haev to keep working on it to see what works and what doesn’t. When I first went there, the doctors just tended to treat “the migraine.” As the years passed, they started treating the “whole patient”, which I think was a good thing. The not only used medication, but biofeedback and other types of treatment. Any time I had trouble with medication, you simply had to call a “Phone Nurse” and they would always get back to you. Unfortunately, there is such a demand on them, with many patients seeking treatmet, that, over time, I started to feel like a number. They had a medical staff of neurologists that came and went. I probably had over 8 different doctors. Seeing that the MHNI was roughly 2 hours away from my house, I started seeking help elsewhere. Now I am trying to find another neurologist closer to my area of Mt. Clemens, Michigan. Anyone know of a compassionate, intelligent neurologist in that area that specializes in migraine? The two that I’ve seen so far, just don’t seem like a fit for me. Both of them aren’t listening to me, even though I have been living with migraines for years….anyone have any ideas??? Just curious. This is the first time I have written on a blog, by the way. Peace!

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