Migraine

i am having a hard time with my family and boyfriend understanding my constant migraines. i am down and out at least 3-5 times a week, every week. i have to take my meds and go to sleep for practically the whole day. my boyfriend stays mad at me because he can never make plans with me or for us because of my headaches. my daughter feels the same. my family says that i miss out on all the fun stuff because i always have a headache. i have had migraines since the age of 5 and i am now 33yrs old. i too am extremely tired of always feeling like crap, because of either my headache or the way everyone else around me feels about my migrianes taking me away from them. i have tried all the meds out there for migraines and have been under a neurologists care since the age of 10. there is nothing out there i haven't tried. i have been to the chiropracter,accupunturist, too many doctors to count and holistic doctors. i feel like a person who is constantly on a diet and not losing weight. it sucks!!! how do i make people understand when words just aren't enough anymore?

Hello and welcome to our forum family kripmeli! 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

I'm sorry you're having such trouble with your family and boyfriend not understanding. Migraine isn't just hard on those of us with it, but on those around us, too. Sometimes frustration comes through, when no one knows what to do or what to say. We do have an article HERE on helping to educate others who "don't get it".

I know you feel like you've tried every medication out there, but statistically, that's actually impossible. There are currently over 100 meds and supplements that are used as migraine preventative medications. Besides single meds, there are also countless combinations you might try. The odds are on your side that you'll find something that will be effective for you. It's not always a fast, easy process, but if you commit to the process and give meds fair trials of at least three months, you will likely get there. Studies show that an effective regimen can be found for at least 98% of migraineurs. You'll find a list that you can take to your doctor that shows the most common meds RIGHT HERE. The number one thing we can do is to find a good preventative regimen.

The other piece of advice I can give you is that if you are continuing to have problems, and frustration is mounting, then it's likely time you need to seek out a true migraine specialist. Some of us get fine care from general neurologists, particularly if we're under control with our migraines. But general neuros are very rarely true experts in migraine, because they see so many different neurological issues. If neuros do specialize, it's more common to see them do so in MS or epilepsy than migraine. We do have a list of patient-recommended migraine and headache specialists HERE that you might want to check out.

Again, welcome. You've stumbled upon a whole "family" of us that understand, and we care. You'll find all kinds of support here. We'll help you hang in there as you keep working on your migraine journey.

Hi Kripmeli!
I'm sorry you are having such a difficult time!

Unfortunately we can't make anyone understand but we can certainly educate them! As I find articles about migraines (only the really good ones), I forward them to my family and friends. There is a link on here to Cindy McCain's interview with People and the Today Show and it is very helpful.

One night when I was feeling particularly down, I wrote a FOUR page description of my migraines - more a reflection on what I encounter - and sent it to my family and closest friends. I was overwhelmed by the response!!

So many of them said - I finally get it. I thought I had migraines, but there not like yours or I thought it was just head pain, I didn't get what all went with it and so forth. When I shared it with them via email, I told them I didn't want pity, but I wanted them to know why I was so frequently an absentee friend and family member and why it was worth it to me to spend so much time and money to go out of town to see a specialist.

If there was a way to share it via this forum, I'd be glad to but it would be a very long post!!

It's so hard for people to "get" what they can't conceptualize. I hope you find your way to help them to truly understand what you are going through and to form a partnership with them to help you.

Oh, btw, I have a little email journal that I sometimes share with just my closest friends and my family called "Beastly Battles" that I write to help me process my feelings. I think grieving is a very legitimate response to the impact of migraines on our lives and that one really does go through all five stages of grief, including disbelief (it has to be something else), anger and finally acceptance.

Much love and good thoughts are being sent your way!!!!

Cyn

Kripmeli,
I am so sorry you are having such a hard time!!! I look at how long you have been struggling with migraines and my heart really goes out to you!!!
I am newly diagnosed so I cannot even imagine living with them as long as you have!!!

But I can relate to the family not understanding. And I don't think you can make some people understand. There are those who do and those who don't. Some people have been thru illness themselves so they get it. But then there are others who just have the gift of understanding when others are in physical or emotional pain.

I wish I could say something to make you feel better! I will tell you that coming here to this site and being a part of this "family" will make you feel better.
It does help to talk and get feedback from people who are going thru the same thing. You will receive love, support and help. I know I sure have.

I am single and my family just doesn't get the migraine thing!!
So, I'm having to move on with living my life & set up a support system of friends who I can rely on and who understand.

The stress of living in resentment over trying to make or get people to understand will only make your migraines worse. Been there-done that!!

So, I hope you will come back to this site and let us know how you are doing and share with us so we can help. Lots of hugs & understanding, here for you!!!

I hope today is a better one for you!
parisbabe

Cyn,
I'd love to read what you wrote. Have you ever used the sharepost part of the site? Unfortunately, you have to sign up again- but you can use the same screen name and password as the one for the forum...

You can post REALLY long posts there, and then let those of us who know that you're going to be posting that it's up, or, you can directly link to your sharepost here in the forum like a link to any other site!

Did that explain it well enough? I'm rather postdromey, and what makes sense to me in this state might not exactly make sense to anyone else, lol!

Cyn,
Yes, that is an excellent idea! Thanks Jamie for suggesting it. I too would love to read the 4 page letter you wrote. Perhaps, it could help my family as well as many others.

So, I hope you and Jamie can get it figured out so you can post that.

And hope you are still feeling good!!
parisbabe

Cyn,

I forgot to mention that if you have any problems with shareposting, I'd be more than happy to help you get the post up so that everyone who wants to see it can do so! I'd bet that Pam and I aren't the only ones who would get a lot out of reading this.

I had a very draining week this past 7 days- A family member whom I thought had "gotten it" came to stay with me due to the fact that DH was going to see friends/ family up north, and I wasn't comfy being alone for that long yet. So, she, in her attempt to make things "easier" for me, stressed me out completely by complaining about the state of neatness of my place, and then proceeded to start cleaning everything in site.

It was nice having things cleaned, but how do you have your guest going through your stuff and saying "can I throw this away, or this, or this? Or can I clean this, or move this..." without getting up and actually doing it myself 'cause it felt awful to have her do all of this and be a lump on the couch.

So, instead of answering the questions, I went over to help. Every day. And I was getting stressed, doing too much, getting not enough sleep due to the dust kicked up from her kind acts- which were absolutely taking all of the energy I had for the day and also for the next... I slept about 4 hrs/ night on average. And yet I let this keep going on. No. I didn't let it keep going on. I just didn't stand up for myself correctly- kept wanting to be the "old Jamie" and it SO didn't work.

So, some of my meds wound up getting tossed by the cleaning fairy, my cat's insulin was put down while she was cleaning yesterday, thus not refrigerated overnight. Bad enough. But when I couldn't find it this morning, I had to search the apt, and frantically call the vet to see if I could get a refill called in for my cat's morning dose. Had I not found it (BEHIND her suitcase!!!), she wouldn't have had it until 3:30pm.

Oh- and the meds of mine she tossed? Triptans... thinking the wrappers were empty.

Sorry to have turned this into Jamie rant time. I just started writing and this just came out. I apologize for hijacking the thread... but this week was awful, and now I'm REALLT curious to know how you managed to change things. I thought I already had done so. Boy was I wrong.


Anyhow- if you have problems with using the sharepost area, just holler!

best,

Jamie,
Oh, you poor thing, my heart goes out to you!!! I can so relate when I was reading this!!! It was like I was watching all this go on and I could just imagine what you were going thru!!! Since I am so triggered by smells, I was getting upset, just reading the post!! I was smelling the dust!

I too had a bad week...and then today I just felt like running away from home. Or going to bed,hiding under the covers and never getting out. And most of it is because I have to deal with people who are so insensitive to my condition.

I have about decided to start making up completely stupid excuses for why I can't go or do things and leave it at that. Stop saying it's because I have migraines. I'll say it's because I have to go to Paris on a cheese & wine expedition. Or go to Africa to help feed the starving children. And just keep up the pretense. Make a game of it. Maybe that will send a message. Maybe that will get them to realize that THEY need to take ME seriously. Hey, it's worth a try!!!

In the meantime, I hope you have a better week!! You and your Cat!!!Poor kitty!!!
And until you can get Cyn's letter and photocopy it and send it out...you'll have to not let anyone into your house!!! Bar the door!!
Seriously, I hope you get some rest...and feel better!!!
parisbabe
Pam

Did Cyn ever create a sharepost with her 4 page description of her migraines? If so, I'd love to read it.

Thanks,
Sandi