Migraine

Hi I'm Jaimee. I was finally diagnosed with familial hemiplegic migraine after 10 months of thinking I probably had MS. It has been a rollercoaster. It was difficult to diagnose because for the most part I was having "silent" migraines. I am keeping a diary now, to screen for other types as well, in particular, basilar artery migraine? Anyhow, Im a mom of 4 young children under 7. I have a busy, often stressful life, and am trying to figure out how to cope with all this. I am looking forward to perusing the forum here and hope to meet alot of great people!

Welcome Jaimee!!!

I know how relieving it can be to FINALLY have a diagnosis! I don't know if you've done much research on your DX yet, but here are a couple links if you wish to check them out:

Silent Migraine

Hemiplegic Migraine

Migraine/Headache Specialists

Well I think that's good to start you out!

Let us know if you need anything. We look forward to getting to know you!!

Welcome! I'm so sorry that your diagnosis was migraine, but I'm glad you've found us. I hope you'll post often.

Four kids under 7! Wow! I grew up in a family like that -- I was 8 when #6 was born, and I remember how wild things can be. Bless you.

Looking forward to getting to know you better!

Gretchen in Mississippi

Hi Jaimee,

Welcome to the forum. Sorry you've had to seek us out. At least you've got some answers. Now, you have a place to start looking for answers. The support here is great. I can't imagine how you deal with your migraines having four your children.

I hope you have some great support at home. I'm glad you've found us.

Hi, Jaimee, welcome to the forum. We're glad you found us. Let us know how we can help.

Hi Jaimee from one Hemiplegic mom with 4 boys to another HM mom of 4! My boys are now between the ages of 9 to 15 (3 of them have summer birthdays though, so that is soon to change!)

I too have hemiplegic migraines. At one point my boys were 7 and under, so I know exactly what you are going through! I can tell you that in some ways it gets easier as they get older! They become more helpful and understanding when you are migraining!

In other ways, though it still is a huge challenge, as they get older, they need rides in more different directions! As you may well know, it can be impossible to drive for days or weeks!(at least it is for me at times) Thankfully(or maybe not!) my oldest will be 16 in July, and will be able to help drive lil bro's around if I'm migraining.

Anyway, a great big welcome to the forum! Glad you found us!

Tawsha

Wow! Thank you guys so much for the empathy and the links and well just the promise of finding some ways to deal with all this... I already feel so overwhelmed. I (not knowing I had ever even had a migraine) always thought a migraine was just a bad headache... Boy, was I wrong on so many fronts. I have a lot of searching to do! And Tawsha! Oh my goodness! I can't believe there is someone else in the universe who has experienced something like I have! Did you feel that way too? When we thought I had MS, we were actually making plans to move closer to my family so they could help out with the kiddos when I got "sick." When we found out it was "just migraine" dh's job emergency relocation of course doesn't cover that kind of diagnosis... even though the symptoms are the same. Alright, off to do some more exploring! Thank you so much guys!

Hello and welcome to the forum family Jaimee

I'm so happy you found us. You've come to a fantastic place for information and support. We are a wonderful and compassionate group and you'll feel right at home in no time.

I see you've gotten some great links already so I'll just add one of my favorites to the list:

Learning About Migraines-Where to Start

Again, a warm welcome and if you have any questions, just ask away

Hi, Jaimee!

I am glad you found this forum - I hope it makes you feel less alone and confused.

I have familial hemiplegic migraine also. I'm the third known generation, and so far am the most affected member (lucky me). This is year nine of being disabled by the disease. When I was first diagnosed (yep, ruled out MS and all that other stuff!) my two boys were (barely) 5 and 2. So, I've been there and done that, but with two kids, not four. My kids are now 13 and 10, and they are thriving, despite almost a decade of terror about what having a sick mom was going to do to them.

I joined a forum early on in my illness, then returned not very long ago to this one when I had some big changes in my meds and was feeling isolated. Both times it helped tremendously. A lot of what I've gotten here has been information, answers to "does this happen to you too?", and most importantly, reassurance that a person can be sick and still be a good mom, even though sometimes other people end up lending a hand.

I actually am beginning to believe that my kids see the world as a more friendly and helpful place because they know that if I'm down with a bad one, I can pick up the phone and keep making calls down my list until I can get them a ride, or a emergency grocery run, or whatever. (Of course, my DH covers, but we try not to interrupt work unless we really have to.)

Enough about me - just wanted you to know that I'm glad, glad, glad that you're through the diagnosis part, and you can move onto treatment and support and re-ordering your life to incorporate this (not very convenient) disease. Ask lots of questions and know that you are NOT alone.

Blessings to you, and the best of luck!

Lynne

Jaimee,
Yes I did feel the same way! This site has provided the best support and comfort I have ever seen. and as more and more people find this site, I am finding people just like you, who have HM and kids!

I too went through the is it MS? questions. Its awful that your husbands work doesnt include HM as an emergency move. I dont know what I would do without family nearby. My DH is a great help, but he has to work! He cant be here during all my bad times. I hope you have someone to help!


Tawsha

Hi Jamie,

Welcome. We are so glad you found us.

Here's the thing- as we all know HM is not "just a Migraine." Thankfully you may not have MS, but HM can be very debilitating as you know. Getting your episodes under control is very important.

When diagosed with a rare form of Migraine disease like Familial Hemiplegic Migraine, it is imperative to be treated by an expert who deals with this condition on a regular basis. That doctor would be a Migraine/headache specialist. Our list of patient recommended Migraine specialists is HERE.

quote:

Originally posted by Jaimee:
Wow! Thank you guys so much for the empathy and the links and well just the promise of finding some ways to deal with all this... I already feel so overwhelmed. I (not knowing I had ever even had a migraine) always thought a migraine was just a bad headache... Boy, was I wrong on so many fronts. I have a lot of searching to do! And Tawsha! Oh my goodness! I can't believe there is someone else in the universe who has experienced something like I have! Did you feel that way too? When we thought I had MS, we were actually making plans to move closer to my family so they could help out with the kiddos when I got "sick." When we found out it was "just migraine" dh's job emergency relocation of course doesn't cover that kind of diagnosis... even though the symptoms are the same. Alright, off to do some more exploring! Thank you so much guys!

Hi,
May I ask what symptoms you experience? I too have been diagnosed with silent migraine or 'migraine equivialnt' and migraine associated vertigo. Although I don't always experience the dizziness and vertigo but have constant numbness and tingling and horrible light sensitivity among other things. Just curious, as I do not get many headaches either.

Welcome, Jaimee! Glad that you found us!

Hi Jaimee,

I have already talked to you ont the posts, but I wanted to add my official Welcome to the forum See you on the posts!!


Dar