Peninsula Headache/Migraine Support Group

  • October 30, 2013 · 5:30 PM
  • This location is shown only to members

After our hiatus, it felt especially healing to share space and stories today . . . thank-you. A warm welcome to our two newest members, Katy and Sandy--I'm thrilled you found us! I'm looking forward to getting back in our monthly groove :-)

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  • Jenna Chat

    I'm sorry I can't make it. Headache late in the day and just don't feel safe driving. Can't wait to meet you all soon.

    October 30

  • claudia

    Hi everyone: Since our last meetup, I managed to find several migraine and chronic support pages on facebook. For years I had grown tired of being treated like a drug addict when going to the er for my migraines. However, I just assumed I was being defensive, or paranoid. However, after seeing post after post after post of the HORROR stories, I've decided to do something about it. I've launched an advocacy campaign on how we can advocate for ourselves. It is a multi-facted plan and I need everyone's help--you don't have to help, but if you can help share your horror stories. Ranjan, can I have a few minutes at the next meeting to discuss my plan? Wish me luck I have an apt with Dr. Ego (aka Goadsby) on Tue

    Hope everyone is doing as well as expected

    Claudia

    2 · September 28

    • Lorraine Calvert

      Claudia: That gave me a little chuckle. Out in the street or at Kaiser. I guess it would depend on where the street was. I've actually made headway with my Endocrinologist. First he allowed me to take desicated thyroid meds and he worked really hard with the pharmacy dept to allow me to get weekly injections of magnesium sulfate. Because I have such horrible GI issues I can't absorb much orally. That was huge, getting him to do this. It's mainly the PCP's who are just daft! I do have a friend who took her son to Kaiser 11 times and they never discovered he had cancer. By the time they caught it he only had a 10% chance of surviving. My friend went crazy, he got his treatment at Stanford and UCSF from that point on and he's very well, completely recovered. Now that's scary!

      1 · October 14

    • Chance

      Lorraine: What I would suggest is read through the profiles of the neurologists at all the Kaiser's within shouting distance of you and find one who lists headache as a primary specialty. I found Dr. Brett Andrews in Oakland. He's not very creative, but he's very supportive -- I can get anything I want, and Kaiser will pay, including very expensive treatments like daily Amerge. I use other resources in addition. I have to go out of the Kaiser network and pay out of pocket, so I try to limit it. Only a couple more months until I'm off Kaiser and onto the ACA, yay!

      1 · October 30

  • Tatyana

    I started my migraine history 6 years ago and now I'm added anxiety and panic attacks. I have no idea, if there is a correlation between them and I have recently a horrible time....
    Thanks for sharing your problems and hopes!

    1 · October 24

  • Lindsay Brothers

    Hi all!

    I'm so excited to have found this group! I was recently diagnosed with hemiplegic/complex migraines and it has been a real struggle to find a decent neurologist, understand how to get it under control, etc. I can't wait to hear from all of you and learn what has worked for you and what hasn't.

    Best,
    Lindsay

    October 12

  • Lorraine Calvert

    I would love to be part of an educational outreach. I will certainly tell my story. I've suffered from Migraine from a very early age. Then came Fibromyalgia and Chronic Fatigue. I have a good deal of pain in my life :-(

    1 · September 29

    • Lorraine Calvert

      Dennis: The best group is a Facebook Group called Fibromyalgia Fighters. The group is headed up by Nicole Hightower and is one of the best, if not the best out there. Some sites have lots of drama, really stupid stuff. Nicole keeps herself as the only administrator and the people are great. There is tons of knowledge, the page is knowledge based, but we have fun too. Nicole believes very much in Magnesium as a supplement and getting proper testing for thyroid and adrenal gland testing. Much of what is talked about on the site is best achieved by going to an alternative medicine M.D. or an Intergrative Medicine M.D.

      October 10

    • Lorraine Calvert

      Claudia: I think it would be great to set up meetings with Neurologists if you talking about migraine. I'm really suffering this past week. One every other day. If you are talking about overall pain management the meetings should appeal to a larger audience. I'm not sure how easy it will be to get access to these people. Let me know if you are focused on migraine or more general chronic pain.

      October 10

  • claudia

    Hi everyone: I am going to try to schedule meetings with local hospital administrators to talk to them about the lousy treatment we receive in their er's. I think it would be better if more of us went, any one interested in going?

    October 9

    • Lorraine Calvert

      I would very much like to go with you! That would be awesome if you can get those meetings. I have Fibromyalgia too so it all depends on how I'm doing that day, but it would be worth it to take pain meds on that day of the meeting. I'm now getting migraine every other day. Talk about 9 pills not being enough! Keep me posted for sure!

      October 9

  • SAnDY

    Oh man, i had a big migraine yesterday that lingered on til today. The heat we had just didn't make me feel well. Did a fairly early walk from 10-11am at San Bruno Mt Daly City (3 mi) yesterday and i'm glad i didn't do more (i normally like to do 5 mi as it was fairly flat). But all afternoon even staying indoors it was too warm for me. (live in a tri-level w/ the bedroom on the upper level). All night i didn't sleep well and kept awakening....can't wait for the weather to go back 10*F down!

    October 6

    • Lorraine Calvert

      So sorry Sandy! I know I was really suffering end of last week and over the weekend. And I have a cast on my left leg which increased the heat so much. I wanted to rip it off!

      October 7

  • claudia

    Ok 2 important components of our advocacy program
    1) Educating the public about what migraines are, and stopping people from using the term generically to describe headache
    2) This is controversial but, there are drug seekers out there. My doctor said sadly for everyone one of us, there are 50 that are abusing system. Therefore we do need to somehow come up with a no tolerance policy for abuse. They make us all look bad
    3) Getting pharm companies to invest in another class of drugs besides triptans.
    4) Insisting insurance companies pay for more than 9 lousy triptans a month--for whom that are fortunate enough to receive benefit from them

    1 · September 30

  • claudia

    hi everyone: I know we have many people on our mailing list who haven't been able to participate actively for one reason or another. However, I want everyone's voices heard, so if you have had any problems/nightmares getting the treatment you need, feel free to send me an email and outline your experience. Also, if you want to get involved locally with me, please let me know. meetup limits characters on these messages, so I cannot go at length what I am proposing in a single message, so I may send multiple messages over next couple of days.

    September 30

  • Ranjan Patel

    Yes, Claudia--I'd love for you to take time to explain your advocacy program (I've joined the fb group). I'm grateful for and admire your efforts on our behalf. Thank-you! (Good-luck with Goadsby)

    September 29

  • Lorraine Calvert

    Ranjan, as always on my calendar and hoping to make it. I just found out my left foot has to be in a cast for 4 weeks, then a brace for 8 weeks. A problem because I won't be able to drive for the 4 weeks I'm casted. But I'll be in the brace 10/30 and should be able to drive.
    I really really want to meet YOU and everyone else.
    Blessings,
    Lorraine

    September 12

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