Migraine

My name is Kim and I am 43 years old. I have been suffering from migraines since the age of 16 and have been diagnosed with Hemiplegic Migraines around 1996. I have also been diagnosed with Vasospastic Angina, which I am told goes right along with my migraines.

I have had a long and tough road especially the past 6 years. I had a Pulmonary Embolism in 2003 and was suppose to have died. A few months before this I had a severe headache and they did a Lumbar Puncture that the Doctor missed and now I have severe nerve damage in my left lower back that over time is getting worse.

I have tried so many medications it is crazy and have allergies to many medications as well. I have even done Botox injections for the migraines.

I have been out of work for the past 2 years due to my back and have had to cut down in the number of Doctor visits, ER visits and hospitalizations due to very high copayments with my husbands insurance. This is just starting to effect me. I know I need to go, I was a health care professional but when it is a choice between keeping a roof over your head and food in your kids tummies as most of you know as a mom you choose to take care of others. I know this is not smart but with money issues I am not sure what else to do. I have been told my husband makes just a little too much to get assistance.

I do take my medications that I have been prescribed faithfully, but right now have had a headache for 8 days and am finding it hard to justify a $100 copayment to the ER along with my $150 medication copayments.

I found this site and thought maybe I would have people who could just talk. My husband is becoming very upset with my medical issues. We have been married for 23 years. I became a nurse in 2004 and he just does not understand why I cannot work. He wants me to just "suck it up" and "not take any more medications".

Sorry this was so long........just frustrated.

Hi Kim

Welcome to our group! I too have FHM and prinzmetal angina (vasospasms). You'll find several others with both diseases as well.

As far as your 8-day headache, have you had at least a 4-hour break in the pain? If no, then you need to go to the ER. I know it's expensive, believe me, I know. But Status Migraine is very dangerous.

I'm so sorry that you had to give your dream job. I know exactly how you feel. I was an engineer and owned an engineering company. I loved my work and was really good at it. But the progression of these diseases made it impossible for me to work. Plus it stripped me of my knowledge memory, or at least miswired it.

Many of us know what's it like to have family members and those closest to us not understand. It is frustrating and hurtful. But I try to educate them, even bring my partner into doctor's appointments, send them posts or articles for them to read, etc. all in an effort to somehow get them to understand even a fraction of what our every day is like. But it can be difficult, mostly if they've never dealt with illness before. Sometimes it's just because they feel helpless or scared, don't know how to reach out and help. But we're here for you.

Wishing you a pain-free day, Tonya

Hello and welcome to our forum family! Our goal is to provide everyone with the information and support that we all need to manage our Migraines and/or headaches. To that end, we consider this a “safe harbor,” where nobody tries to sell us anything, and we all use “family-friendly” language so parents are comfortable letting their children read the forum with them.

Please take a few minutes to review our policies and guidelines along with the other information in the START HERE folder. For information about Migraines, a good article to begin with is Learning About Migraines - Where to Start.


What concerns me now is the eight day "headache." Any Migraine pain lasting longer than 72 hours without a four-hour, pain-free break while awake may be status Migrainous. This condition may put us at an increased risk for stroke and needs medical attention. Continue reading more about this in the article: Status Migrainous - The Basics

Our information on Hemiplegic Migraine, can be found HERE

I see you live in MA. We have a wonderful Migraine specialist on our patient recommended Migraine list, especially if your current doctor isn't able to help you. You can see that HERE. It is always a good idea to be treated by an expert when someone has a rare type of Migraine disease like HM. You see, a Migraine specialist treats only one disease -Migraines and headache disorders. A neurologist, a fine doctor, treats so many different conditions, like epilepsy, stroke and MS it is hard for them to be experts in any one area. Take a look at this article for more information on the importance of seeing a Migraine specialist: Migraine and Headache Specialists - What's So Special?

I totally understand about your DH wanting you to "buck up" and just get over it. Well, tell him to get you to a specialist and your chances will be better!!

Hi, Kim!

Heavens, but you've certainly been through a lot! I don't blame you one bit for being frustrated.

I'm with the others. Eight days of straight head pain shouldn't be left to its own devices. I know that some of your other issues complicate things, and make it a little trickier to try and squash this, but you need to do something. Yes, others are important to look after, but you deserve to be looked after, too.

You definitely found a whole bunch of us that will be here to talk to. We get it, because we live with chronic head pain, too. We've all dealt with the strains it puts on our lives, and with people who don't know what it's like, and may not understand. You're among friends.

Now, here's the deal on length. Yours wasn't a long post at all. Even if it was, you're entitled. We've got a rule around here that everyone gets the space they need to let out whatever they need out. You should've seen some of my posts on the old forum we had. Many of them were so long the forum thingie truncated them. You just don't worry about it, and post all you need to. We'll take the time to read the whole thing. You deserve that much.

Hi Kim,
Just adding my welcome to the list. I hope you've decided to go to the ER since you posted. I know it's hard, especially when money is tight, to take the plunge and head in, but the girls are right, it's too dangerous not to.

Feel free to come and talk to us any time, and don't worry about 'long' posts. Express yourself in whatever length you choose.

Hope you keep coming around!
Meli

Hi Kim!

Just popped in to say hi! and welcome to the forum! I agree, going to the ER is no fun. Especially when your partner isn't being fully supportive, or is saying something along the lines of "do we have to do this AGAIN?" Uggh. That made me feel worse than the Migraines at times!

Luckily, we have information that you can give to your husband that will hopefully get him on the right path to understanding Migraine Disease, and how it affects so many aspects of daily life!

Take a look at this link! Migraine and Headache Education for Those Who "Don't Get It"

Education about Migraines and headaches was VERY necessary for people in my life, and that information did the trick! Now I have some awesome allies!


Welcome again,