Really struggling...could use some help...

Hi there,

I've posted here before so you guys probably remember me, but I've been having a lot of trouble lately with my migraines. I've been diagnosed with complicated/ confusional migraines. The confusional part because I get, well, confused. Actually it's kind of hard to explain to people. I have a good friend that has seizures, and she's the only other person I know who gets the sleepy, groggy, my brain just shut off now I have to go to sleep because there's no other option problem.

My meds work well for the pain, and pretty well for the nausea, but do little to help this part. I had an EEG a few years ago when I had an aura (I usually get trouble talking), and it didn't show a seizure, but my brain waves slow down. According to my neurologist, my brain starts acting like I'm drunk.

So...um...then lately I've had a few problems where the trouble processing what others were saying got so bad that I simply sort of blanked for a few seconds. I remember being there, but no idea what they said. My neuro. knows about these things, and I'm pretty sure that's the "confusional" part of my migraine. But it really does scare me, and it is hard to explain to people at work without going into too much detail.

So right now they are treating me like I'm disabled. It's really quite bad. Honestly I have some health issues, and sometimes I need to do things in a way to pace my energy, but I'm really dedicated and productive and kind to people.

So....I've been trying to think of ways to get my own fears and concerns off my chest. I'm single, and I live alone. I have a feeling I'm probably talking too much about health issues at work. Simply because I grew up in a family where talking about health was forbidden and because I've just moved and still am getting to know more people in my area.

I was thinking of starting a blog, as that seems like a good way to connect to other people struggling with health issues. But it would be nice to have people to talk to who get having health issues (it doesn't have to be migraines). Do you guys have any suggestions?

Thanks in advance,

Angel

P.S. I've just started taking more neurontin along with my really high dose of cardizem, so hopefully this will help. Also, I currently have to wear a heart monitor for the next month, which is sort of obvious, so this isn't helping the work situation.

Angel,

I think a blog is a GREAT idea.

I don't talk about my health at work much at all, other than if someone asks if I'm having a bad day (it's written all over my face).

I stopped discussing it because the person I share an office with said he was tired of hearing about it. That opened my eyes (and yes embarrassed me, but in the long run it was helpful).

I found that not talking about it so much made me not focus on it as much either. Plus, it is only discussed when my office mate brings it up. When he brings it up I have a sympathetic ear, rather than him thinking "not again".

That's why I find this forum so valuable. I can open up to express what I'm feeling. If someone is thinking "not again" they can just skip my post. But the majority of the time I can feedback and understanding that I can't get from people who don't suffer from this.

I've only had the confusional part of the headache a couple times. Scary! I'm sorry you go through it so frequently.

Angel,

I'm sorry you're going through all these challenges right now. I think your blog idea is wonderful.

Personally, I am so thankful for this site (Ronda's). Sometimes it is my lifeline. A place where someone understands what we feel like physically and emotionally and where we can receive feedback on our issues. It, along with all the wonderful people here, are definitely a blessing in my life.

I hope they can help get your meds adjusted so you don't experience the blacking out again. I know that's a very scary thing to experience. Take care.

Hi there,

Thanks so much for the encouragement! I really needed it. I've been thinking more about the blog idea, and am thinking it could be a really good thing.

Also my work keeps saying I don't need a doctor's note, but I've decided I do, because I find this can help too sometimes. My last work place was willing to let me come in a bit late when I had a bad migraine, and frankly from my side it just gets exaushting because I have to really struggle to get out of bed at all, and so it takes 4x as much effort to get to work, and then when I get there people are angry at me. So a note really helped.

Good news, the neurontin seems to be really helping, but it's making me sleepy, but I'm just happy my head feels clear.

Angel

Angel,
I think that writing on a blog will help you enormously.
This board is of course a great source of help and understanding for all those who cannot find moral support and sympathy elsewhere.

I have a colleague who gets VERY confused during certain attacks. Confused to the point of telling the ER doctors that he's a woman.....
So, you're not alone and you deserve to vent and get help by others.

Take care

HI Angel

Knowlege is power and removes the shadows of fear. The more you talk and learn about it, the more you can dispel the fear. We've all had our fearful times and have felt so horribly alone and disabled. Talk, ask and read. The internet is a world of information at your fingertips, and this site is full of people just like you. Look up Teri Roberts @healthcentral on the net as she has tons of up to date info on that site.

People with migraines lead full and productive lives, regardless of the pain and complications, and so can you.

Angela

Howdy

It is so very cool to me to meet another person with confusional, complicated migraines. Me too! I understand exactly what you describe so well. I cannot tell you how heartening it is to have someone else describe what I live with.

First, good for you for holding down a job with this dreadful disease! Keep working just as long as possible! I really miss being around people, having somewhere to go in the morning, a paycheck ... all the good things about working. I really respect you for working!

Second, the doctors note to your companies HRM is an excellent move. Creating a paper trail MAY come in handy. You may never need it, but a doctor's note is a great defense. Good decision.

Third, I vote against a blog to meet your needs. Why? Blogs are one sided conversations. You put yourself out there ... and get little if anything in return. Been there, done that. did not work for me. But if you want to give a try, go for it. Blogspot is a a great site for free and easy blogs.

Fourth, this forum meets my needs much better than a blog. Here, one gets conversations about topics. People actually respond. THAT is a very cool thing. I think the need to discuss our disease is not so much a need to get it all off the chest as it is a need to know that other people "get it." Such can be accomplished at this forum ... such cannot be accomplished with a blog. Feel free to post to your heart's content here. We "get it."

Fifth, consider carrying an explanation of your disease in your wallet, purse, backpack - whatever you always have with you. Imagine getting confused when with strangers - restaurant, movies, store - whereever. Having a written document for strangers to read may save you a lot of grief. I got confused amongst a group of acquaintences at a bar in San Francisco once. I heard them discussing an ambulence ... thank goodness a close friend was there to tell them to relax and get me some water. Otherwise, I would have found myself in a hospital againt my desire.

When I fly, I carry an explanation of my episodes with me. It helps for "seat mates" to know that I am not crazy or going off the deep end. Just a thought for you. And stangers on planes and buses and stores have been so very kind and helpful to me if I happen to episode. IF they understand what is happening to me.

Again, congratulations on working - THAT is simply terrific!

Hi everyone,

Thanks so much for your thoughfulness and well wishes! It's been a pretty discouraging week. I had been doing much better though, but this morning I threw up and my supervisor told me to go home (which is kind of good because I'm purely exaushted, but kind of bad because I have only a few sick days left). She thought I had the stomach virus that's going around I think, but I haven't thrown up since so pretty certain it's a migraine. Grrr.

Richard,

Wow....sorry I know this is way not cool...but it IS so cool to meet someone who also has confusional migraine. Sometimes I start to feel crazy, because the more I explain to people at work, the more I think they think I'm just stressed. Which is stressful in itself.

Yeah I always default to thinking it's not so bad, but then I realize how much it affects my life, and that the aura is usually much more debilitating than the pain (which is really saying something because I hate bad pain too). So recently I have resigned myself to taking more preventive medication, as it seem appropriate. It occured to me that people take a lot of seizure medications for well....seizures...and that although I don't have that, my migraines affect me just as much.

I'm sorry to hear about your husband. That must be very hard.

Oh, and thank you for all the encouragement about working. I will definitely work as long as I can, but it felt so good to here the affirmation . I'm not sure anyone I know really gets how hard it can be for me to keep up with things. So thanks.

Take care,

Angel