Hello! I just returned home from my second visit to the hospital this week. Today I was diagnosed with Complex Migraine Syndrome, and they believe I have what is called Hemiplegic Migraine. After reading so much about it since Thursday I am scared and anxious. I'm trying to be strong for my family and act like everything is okay, but I'm really just worried about my future and how my episodes or attacks will affect my life. Does anyone have any words of advice or really anything to say to someone who is newly diagnosed and incredibly scared?
Thank you!

Hello, Hoppipolla.

Welcome to Neurotalk.

I am sorry to hear of your condition; I recognize that both the diagnosis and the experiences themselves must all be quite terrifying. Please take care of yourself as you need to. Don't be afraid to let your family know your needs.

How frequent are your attacks?
Did the ER doctor prescribe anything for you to take?
Do you already have a doctor who specializes in migraines treating you?

If you do not have a specialist, it would be good to look for one. Many family physicians, even many "regular" neurologists, do not have an exceptional preparation when it comes to migraines and especially the less common variants. There are meds... mostly a matter of figuring out what works best for you.

Hang in there. I hope others will come along who can provide better feedback. I only have the "regular" kind of migraines, and mostly wanted to say hello to you. I'm here though, if you want to talk. Let me know if I can help with anything like additional research, too.

waves

Thank you for all the advice. The ER did not prescribe me any medications but told me to see a neurologist. I am to call the neurologist today after 9am. The issue is that I am unemployed and do not have health insurance. I graduated from college in December 2012 and have not been able to find a career since. I can go on my mother's health insurance but the cost to do that is $460/month and I don't have that kind of money!
It's frustrating because I'm looking for answers, I've had two pretty severe attacks 5 days apart from each other, yet neither one was accompanied by a migraine headache. The symptoms are incredibly scary, during my first attack I couldn't even remember who my fiance was.

Thank you so much for being so supportive. I'm sorry to hear about your migraine condition.

Hi Hoppipolla,

So is this the first time you've had these attacks?
Have you had classic migraines or any aura symptoms before?

Wow, having memory affected like that is memory sounds so scary! I've had attacks (with and without headache) that affected speech or made me weak on one side but the impairment is usually mild in my case. I only had one attack -- without headache -- where I saw all these colors then blinding white light, lost most muscle tone down one side and honestly I don't know if I couldn't speak or if the stab of fear just prevented me from being able to find words. It was an isolated case and I was told it was migraine, but if that is true, it seems strange I've not had other such episodes. Of course, I'm grateful that it hasn't happened again!

I'm really sorry to hear of the insurance situation. Might your parents or your fiance help you with insurance? In any case, just do the best you can -- see whatever doctor you can. Fingers crossed that the doctor you see is someone attentive and conscientious.

Write back as to how your call today went, if you'd like.

waves

Waves,
Thank you so much!

The call went WONDERFUL. The neurologist has treated HM before and is willing to see me and work with me so I can pay him whatever I can afford.
I feel so lucky!

Thursday was my actually my second attack. My first was in July 2010, and they said I had a TIA gave me an MRI saw nothing and sent me home and told me never to worry about it again... so I didn't. My second was on Thursday, third was yesterday, and unfortunately, my fourth was today. I'm scared about how close they're getting.

As far as insurance goes, my fiance and I talked about getting married as soon as possible (like next week) but after talking to his employer I wouldn't be able to be added to insurance until October 1st anyway. My father is not in my life, and my mother is struggling and cannot afford to help me at this time. She did talk to her employer about getting me on her insurance and they said it was no problem but I'd have to wait for open enrollment next year.

When I was at the hospital they assigned me a case worker and helped me apply for state aid, however, it will be 45-90 days until I am approved.

I have applied for 97 jobs since March... I know that's insane, but I've only gotten 4 interviews out of that. I have two shadows at two different companies coming up next week and I am praying that one of them offers me a position. It will be the first time in my life that I have a stable full time job and the first time in over 3 years that I will have health insurance and benefits. I am beyond excited!


Thank you so much for being so interested in me, it really helps talking to people about this.

Hey there, Hoppipolla,

So I'm guessing what you had back in 2010 might not have been a TIA, but rather, a hemiplegic migraine attack. They can look like stroke or TIA. However, that isn't necessarily the case, because there is an overlap between migraine incidence and stroke risk. I don't know what the rest of your medical situation is and if you have other risk factors. Do please let your neuro know of the other episode, and give him all current bloodwork, tests and any test results from the 2010 episode. Bring the old MRI too, not just the report.

Speaking of the neurologist, how wonderful that you've found someone with experience treating hemiplegic migraine, and who is so willing to work with you on the financial end. It is good to hear, too, that your fiance is willing to step up the wedding date so as to get you on insurance sooner... October is not that far away. It would be good to have insurance in place ASAP for the meds.

Sorry to hear about these recent attacks being in such rapid succession. It is worrisome, and it needs to let up! When will you be seing the doctor?

I wish you the very best with your upcoming shadow interviews. Who knows, maybe both will come through and you'll be able to pick the one you like best!

I am glad you joined up, here, and glad to talk to you. Let me know if I can be of help in any way.

waves

Yes, I am going on insurance ASAP. The soonest the doctor can get me in is December 17th. I'm anxiously awaiting it! They told me to go to my primary care doctor as well, but I'm not really sure what it is he's going to do for me.

I'm just happy to have this diagnosed, it is such a relief!