Migraineurs Support User Group
Meet Our Group Moderators
About This Group:

A place for migraineurs to discuss anything and everything related to migraines. Topic suggestions: Think of this as a support group for migraineurs. Reach out to group members when ever you need support. Give your support to fellow migraineurs. You, as a migraineur yourself, probably have a wealth of knowledge to share with others. The knowledge that you have could vastly improve the quality of life for another group member. Share share share! Discuss your current acute and preventative treatment plans. Ask others about their current acute and preventative treatment plans. Discuss past acute and preventative treatment plans as well... we can always learn something from what didn't work! Discuss your own personal tips and tricks for lessening the severity of acute migraine attacks. Post about your upcoming GP or Neurologist appointments. Ask other group members questions about what to expect and suggestions on how to prepare. Update fellow group members on your progress... both on set backs (so that we can provide support, suggestions and hope!) and on successes (so that we can congratulate you and so that you can provide other group members with hope!).

Founded by marileew on September 27, 2009
197 members
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Meet Our Group Moderators<img src='/RoR/images/blank.png' class='icon_img_ww push_pin_icon'>

Welcome Everyone,

We would like to introduce you to our three group moderators: marileew, rudyhorse and dame_wilbur. Please feel free to contact any one of our group's moderators if you ever have any questions or concerns about the Migraineurs Support Group, we are here to help.


rudyhorse
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A little about me, my name is Tracy, Rudy was the first horse I had and still love him hence my user name.  In my early twenties my migraines began, we were able to manage them without too much medication.  Then while I was pregnant with my son 12 years ago they got worse, but I still could use medication only once a month or so.  About 3 years ago I believe I had a small stoke, it was then that the migraines came on fierce.  I also have a few Auto-immune diseases.  

Other issues have been there too, memory issues, staring off and not hearing others, sick to my stomach and light headed as well as falling weekly.  So my family and friends wanted me to go to Mayo Clinic in Rochester, which I did a couple weeks ago.  They feel it could be seizures from my EEG results.  It appears some of my migraines more recently are after seizures.  My family practice Physician is the one who helped me the most, she always believes in me.  

My Mother, Brother, and Sister all suffer from migraines too.  Many of my friends do also, so I am pretty familiar with different kinds of Migraine.  Both my sister, who had cancer and that worsened her migraines, and I found that preventative treatment is sooooo much better than the ER.  I use a blood pressure medication called Diltiazem, as well as Magnesium and Zomig for acute issues.  I have tried many others for acute migraines also.  This group has helped me so much to figure out triggers, like chocolate, weather, and soda.  Now I hope to learn about the seizures to prevent them and about Migraine related dizziness.  At Physical Therapy they gave me a quarterly Newsletter on Vestibular disorders, dizziness, motion intolerance and vertigo attacks all associated with Migraine.

Previously I have worked with all sorts of insurance companies doing appeals for patients, so I have some knowledge about insurance, Social Security disability, and financial help from medical facilities.  Now I hope even if I don't know the answers, that this group will know I am here and feel free to just vent, ask me a question, anything at all.  It is such a wonderful support system we have, so I hope we can be there for you, as I know I will learn from you all.


dame_wilbur
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A little bit about me: I'm 22 and I have been retroactively diagnosed with migraine to fall of '95 when I was in 1st grade, although my family and I expect that I've had them since birth. I've been in treatment for migraine since '98 when I saw my first neurologist after my pediatrician ran out of ideas. I had surgery on my sinuses in '99 in hopes that that would be the cure, with little effect. Early September '01 I contracted Status Migrainous (similar to Chronic Daily Headache) and haven't had a day without a migraine since. My migraine hasn't gotten below a 6/10 since '03. I used to pass out up to 10x a day from the pain until, after many tests, I was diagnosed with vasovagal syncope in '05. Since being put on a heart medication which controls the formerly random dilation of blood vessels, I've passed out only a handful of times.

Since '98, I've pretty much run the gauntlet of Western medicine, including going to the Michigan Head Pain and Neurological Institute (MHNI) in '04-'05. After they threw up their hands in resignation, I've focused on broadening my medical horizons. I continue with Western scientific practice, (10 daily preventative medications) but now also include acupuncture, chiropractic, and Somatic Experiencing on a regular basis.

I withdrew from high school in '05 because of the migraines, got my GED, and have been trying to be a writer ever since. After I withdrew, I fell into a huge depressive funk that lasted almost 3 years and ended up in the psych ward for suicidal actions while disassociating for 10 days in '08. I've been on SSI since '07. I have an awesomely supportive mom who helps me out, takes me to my appointments, and generally is my lifeline to sanity.

In addition to this forum, I moderate daily_migraine and painful_poets, two communities over at livejournal.com. When I'm not curled up in the fetal position I'm working on my writing, and am currently in the middle of getting a children's book on growing up with chronic pain self-published, along with writing a new novel each November since '08. I look forward to being one of your moderators,

~Dame


marileew
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I’m marilee (user name “marileew”). I have had migraines since I was a child and I was diagnosed with chronic migraines in 2005, at age 21. At first, I struggled to understand migraines and I did not know how to treat my condition. The journey was frustrating, although with time I learned more about migraine disease and the various ways in which migraine disease could be managed and treated. I now feel quite versed in knowledge pertaining to migraine disease. This year my family doctor, who has always gone out of his way to help me with my migraines and pain levels, referred me to one of the most respected neurologists in my country. I am so thrilled to be under the care of my new neurologist, as he is an absolutely amazing doctor; as well as under the care of my family doctor, who also specializes in a variety of chronic pain diseases.

My current acute treatment plan is quite effective at stopping migraine headaches once they start. Finding an acute treatment plan that worked well took time, but my doctors and I now have an acute treatment plan that is highly effective for me. I believe that fine tuning my acute treatment plan to where it is today has been a major accomplishment. My doctors and I are still hoping to refine my preventative treatment plan so that one day it will be as effective as my current acute treatment plan; although, we have made breakthroughs on that front as well (such as stopping my chronic low grade daily headache).

One of my hobbies is reading peer-review journal articles that relate to migraine headaches and clinical trials on migraine treatments. I also spend free time reading the official prescribing information for medications, prescription and over-the-counter, that are used in the treatment of migraine headaches as well as some other diseases. I am very interested in both pharmacology and pharmacy, although both are hobbies and I do not have professional expertise in either subjects. I do, however, have a lot of personal expertise in the experience of having migraine headaches and would be always happy to share with you any of my personal experiences and I am also here to listen to your experiences. As well as posting questions and starting discussions in the group, please feel free to contact me, as I am here to both answer questions and listen.
2 Comments
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Did you get disability for migraines?
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I know this is late and I'm not rudyhorse, but one of the things I am non disability for is my chronic migraines.
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