Migraine

Hello Everyone,

After 6 months of neurologists, I finally went to a migraine specialist. What a wonderful, uplifting, supportive, positive experience! I love my new doctor. She is wonderful and heaven-sent. She listened to me. How amazing. She assured me that it's "not in my head" and these are not pseudo symptoms. She immediately questioned why all the other doctors so quickly dismissed other problems and lumped all my problems as "caused by migraines." She even gave me a hug before I left and told us that she will stick with us until we find the problem and then help me to get better. She's so kind and warm.

For those of you who don't know me or my history, since April first I lost my intellect (I'm an engineer who can't understand math, science, etc.), then I started having bouts of confusion, then the daily migraines started on July 2 (I've had migraines for 11 years but not like these), then in August I spent 5 days in the hospital for seizures, and since then I've struggled every day with severe neurological problems from confusion to weakness and paralysis (all left side), sensory problems, etc.

We asked the same question of each doctor along the way, WHAT IF the migraines are secondary and being triggered by something else? I was dismissed and told it was just my complicated, Hemiplegic Migraines, which it may well be. She (my new doctor) had a hard time believing that my HM would cause my problems to be constant, consistent, and continuous for the last 7 months (i.e. daily).

I failed my neurological exam. My left side sensations are much weaker/lighter than my right and I can't touch my nose with my left hand (hits the right side of my face), i.e. both of which I knew about. My pupils are non-symmetrical (which I didn't know about).

She's ordered an array of tests for me, tons of blood work, MRI with contrast, MRA, spinal tap, and sending me to her colleague who is a seizure specialist to see if the seizures are primary (as she believes I'm still having frequent seizures). I had a cognitive test done already on Monday (had to push my former neurologist for that one).


I'm sharing all this information for a couple of reasons.
(1) You have to keep searching for a doctor you feel will partner with you and is capable of helping you.
(2) Listen to your gut and follow-through. In the hospital, we knew it was possible that something else could be wrong with me that is triggering my migraines. We just had to keep searching until we found a doctor who would work with us. Believe me, I've fired quiet a few doctors this year.


I have hope again. And I'm excited to get to the root cause no matter what it is and then get onto the treatment/recovery plan.

Here's hoping all of you are having a wonderful, warm day. Be well, Tonya

I am utterly thrilled for you, Tonya! It sounds like you found a fabulous specialist who clicks well with you. I love hearing about her being compassionate, truly listening, and having stick-to-itivity. And hearing that she not only has all that but also gives out smooshes? And that she is for real and for true? I think that just made my entire day. You've worked hard at all this, and you deserved this doctor to be along your path. Hooray for you!

You are so right about each of the reasons for sharing this good news. We have to find someone that will listen and will work with us. And we can never give up no matter how many docs do. You've lived that, and you're proof it pays off. I couldn't be happier for your success, or prouder of your efforts. Good for you!

Congratulations, Tonya! This didn't come to you by luck or accident, but by your determination and courage. The same qualities will guide you as you make progress with your doctor.

I'm so glad you shared this good news.

Hi Tonya, I think I know exactly who your migraine specialist must be just from your description! I'm in Milwaukee too, and just started seeing a migraine specialist at the Wheaten Fransiscan Comprehensive Headache Clinic. I think we might have the same doctor. She is exactly as you described, hug and all. I cried at my visit because someone finally listened to me! I hope your visits continue to provide answers and comfort

Migraineur,

You're right. That's her. I wrote Nancy and asked her to get our doctor added to the list of migraine specialist in WI. I wish everyone could have a doctor as wonderful as she is.

How is your treatment going?

Stay warm today (even though it's easier than the last 2 days). Tonya

Hi Tonya,

Thanks for sharing your visit with us. I will get her information out there!!

Tonya,
I see her also, at Wheaton in Franklin. No name was necessary, I just knew who she was. I have been seeing her, and her NP, for nearly two years. I pray for good results for you. We're still working on my migraines. I know that God never gives us more than we can handle (which is why women get them more than men ), but I hope He decides I've handled enough soon! Hang in there. bkb

Hi All,

I'm yet another one in Milwaukee who sees this wonderful migraine specialist. I am also a hemiplegic migrainer, so she has at least 4 of us now, Tonya. I haven't seen her name added to the patient recommened doctors yet. She really needs to be added. She has saved my life ... and that is no exaggeration. My story is very similar to Tonya's.

Tonya,

I'm glad to hear that you found a good doctor. good luck on your voyage...:-)

Too bad there's no one like that in the state of Massachusetts (which is riddled with research hospitals & top medical schools.

Hi Everyone,

Here's an update. Our Franklin doctor gave it a good try over the past 5 months, but she just wasn't able to reduce my HM attacks. It may be due to my heart condition (prinzmetal angina), which my cardiologist believes may be the primary trigger for my HM. We've had to stop changing medicines for now as I ran out of money, closed my business, and lost my health insurance. That means I'm staying on my current medicines and trying to manage my health.

As I can't work or drive and I need constant care, I'm filing for disability and hopefully in time I'll get it so that we can continue on with the search for a solution.

Why am I telling you this? Just because a migraine specialist has a few HM patients doesn't mean that he/she can reduce or manage your health, as other underlying health conditions can complicate HM making it more difficult for your doctor to treat you. For example with me, my doctor wanted to raise my Depakote; but more than 1000 mg daily gave me chest pain (my angina). It became frustrating for both of us. My point is: Be patient and persistent but at the same time know when it's time to seek another opinion when your doctor may have hit a wall.

Be well, Tonya

I'm very sorry to hear this, Tonya. I'm just starting to realize what a battle I've been drafted into. Of course, I'm going to hope for the best.

So far, our Franklin doctor has helped me more than any other medical professional so far, so I'm pretty happy right now. Of course, I'm still having migraines every day, but they aren't as intense as they used to be, and they no longer seem to be causing all the neurological issues they used to, so I think (cross my fingers) I might be getting better ... though my chest is hurting. I've been hoping it was heart burn or even gas

Dr Purath was on Good Morning America last month talking about migraine headaches! It was pretty cool

http://abcnews.go.com/video/playerIndex?id=7862789

Thanks for sharing the link!

Last week, I had the opportunity to talk with Dr. Purath. We were supposed to talk briefly, but ended up talking for an hour. Am looking forward to meeting her at a conference in September.

quote:

Originally posted by Migraineur:
Dr Purath was on Good Morning America last month talking about migraine headaches! It was pretty cool

http://abcnews.go.com/video/playerIndex?id=7862789

Migraineur: Thanks for the link. It was cool to see her on national TV.

Teri: I'm glad you had a chance to talk to her. She's a very caring doctor.