Change Name of rare Hemiplegic Migraine to Hemiplegic Neurological Disease
This petition had 711 supporters
If you ask any Hemiplegic Migraine (HM) patient if people, family physicians, and emergency room doctor's take you seriously when you give them the name of your condition, you will overwhelmingly be responded to with a firm "No!" Because our condition has the word "Migraine" in it's title, many of us are left in emergency waiting rooms for hours, sometimes with very dangerous symptoms or disregarded by doctors as drug seekers because of our muscle pain and our weakness and/or paralysis may be seen as fake or excessive if a neurologist is not called in for evaluation, which is the case in most instances. As a member of several Hemiplegic Migraine support groups on Facebook and forums, this is a shockingly common topic of conversation. You can also find tweets on Twitter with the same frustrations. So many chronic HM patients are disabled, but unable to qualify for disability due to the migraine label. IF A NAME CHANGE IS OUT OF THE QUESTION, we ask that ER's and offices/clinics across the world educate their personnel about this migraine type.
A common story goes something like this: "I was asked by a friend why I was limping and not able to use my left hand and arm and talking weird. She thought I was having a stroke. I told her I had Hemiplegic Migraine. At first she looked confused but when she heard the word "migraine" her face took on a brighter look and she commented that she completely understood and pretty much told me to take an Excedrin Migraine pill and sleep it off. She knows, she has migraines too. I just looked at her and knew she'd NEVER understand. I then have to explain in detail EVERY neurological symptom I go through in addition to migraine and she agrees it's definitely NOT a migraine, especially when some people don't even have migraine pain. Yes, I have a migraine, but that's not the worst part."
The symptoms that accompany the migraine (and for some, do not have migraine pain at all) are very disabling causing most patients to use a wheelchair or walking aide or bed-ridden. We are sometimes hospitalized if we take common migraine medications, like Imitrex. For a lot of us (not all, for some it does help), Imitrex causes severe hemiplegic migraine symptoms. I know, it's happened to me and I was hospitalized for a week. If we are unable to speak we aren't able to tell emergency room doctors that we aren't experiencing a stroke and rushed to get an MRI or CTs. As soon as we are able to explain or write it is a hemiplegic migraine, they scratch their heads and head to their computer to look it up and take their time providing us care, prolonging our severe symptoms, if they are uncomfortable providing us with medications. Some patients request narcotics, but what some doctors don't understand is that it's for the body pain - the muscle pain that we feel from all of the muscle spasms we might encounter. For myself, personally, narcotics do nothing for my migraine pain, BUT, they help my muscle spasm pain SO much. IF I do have migraine pain, than the emergency room protocol for migraine will usually work. Most emergency room doctors are so set on saying no to narcotics for migraine patients, but we are NOT your typical migraine patient.
I realize re-naming a disease is not easy to do and not taken lightly, but as a patient, I feel the name "Hemiplegic Migraine" diminishes the reality of what we suffer through. It's a very real problem for patients. I know, I read their complaints every day in real life, from both adults and parents of children with HM. There are even patients who have created YouTube videos about this exact topic. The video attached to this petition is by LifeLongBrainFreeze and she has given me permission to share her channel.
I have chosen to share this petition with two doctors. Dr. David Dodick and Dr. Robert Shapiro. I do not know them personally, but would love to meet them and discuss this issue. I realize they cannot make this name change themselves, but I follow their research and I have read their published papers in medical journals about migraine and hemiplegic migraine. I have also followed them on social media and look up to them as pioneers of our time in the migraine community. I believe that their voices can make a big impact on the migraine community as a whole and maybe someday in the future, should they agree with us, we can make this change. I hope they will take time to read through all of your comments, as so many of you have written from your hearts. Thank you so much for your signatures!
Curious about Hemiplegic Migraine? Learn more at https://americanmigrainefoundation.org/living-with-migraines/types-of-headachemigraine/hemiplegic-migraine/
Want to see what Hemiplegic Migraine can do? YouTube blogger LifeLongBrainFreeze has allowed me to share her channel: https://www.youtube.com/channel/UCQrdNumCLWz6kgs4BQiVKXw
Find my blog about life with Hemiplegic Migraine and other chronic illnesses: http://achysmile.com.
Thank you so much for your help!
Erica Carrasco, Hemiplegic Migraine patient
Achy Smile Blogger: http://achysmile.com
Today: Erica is counting on you
Erica Carrasco needs your help with “Sign Petition to Change #raredisease name #HemiplegicMigraine to Hemiplegic Neurological Disease #neuro #neuroscience #migraine”. Join Erica and 710 supporters today.