Migraine info needed

[bavaria]

The last time the triage nurse told me that he gets "migraines" and knows how my ds feels, but he just has to continue working with one.....I didnt say anything , but felt like saying....Ahhhhhhh, no you have a bad headache, if you had a real migraine you would be out for the count.

there is a lot of myth tht a migraine is a bad headache, therefore any bad headache is a migraine, which is of course not the case....

 

[TruBlu]

Do any of you ever have them start in your sleep? Those are the worst for me. They are really hard to treat after they are full-blown...

 

[2bemarried]

Do any of you ever have them start in your sleep? Those are the worst for me. They are really hard to treat after they are full-blown...

90% of mine start when I'm sleeping. The doctors had a really hard time understanding that. It's not like I can pop in an Imitrex before I go to sleep every night. That's why they gave me Nortriptylene to prevent the migraines. Unfortunately I haven't been able to take that for a year b/c I'm trying to get pregnant. The Imitrex is my only relief.

 

[Magickndm]

I hate it too when people equate a migraine with a bad headache. One time when I had to go to the ER, the nurse at the front desk asked what was wrong, I said migraine, she wrote "headache" on the chart.

Do any of you ever have them start in your sleep? Those are the worst for me. They are really hard to treat after they are full-blown...

Yes, but weirdly enough, I guess in some way I know it because I'll dream I'm having one.

 

[CinderellaIam]

90% of mine start when I'm sleeping. The doctors had a really hard time understanding that. It's not like I can pop in an Imitrex before I go to sleep every night. That's why they gave me Nortriptylene to prevent the migraines. Unfortunately I haven't been able to take that for a year b/c I'm trying to get pregnant. The Imitrex is my only relief.

The same for me, 90% start in my sleep and I've had a bad reaction to Nortriptylene (I'm also alergic to codine). Once I wake up with one I am useless for at least 12 hours, nothing helps. I just lay in a dark room with cool rags and a bucket by my side. The next two days I feel like I was out partying all night with Aerosmith!

 

[TruBlu]

Yes, but weirdly enough, I guess in some way I know it because I'll dream I'm having one.

Me too! I thought I was the only one.

 

[luvwinnie]

It drives me crazy when people think they have migranes!!! There is NO WAY you can continue to do anything when you have one - unless your job is laying in a dark, quiet room with ice on your head vomiting.....
Now I'm depressed.... this sounds like a better job than mine....

YES!!!! I get very annoyed about this also.

 

[piratesmate]

I, too, am so tired of hearing people equate a bad headache with a migraine. It seems that nearly everyone I speak to lately "gets migraines too". Yeah right - then how do you function?!?

What I found even worse, however, was seeing a series of local doctors (including the neurologist) who seemed incapable of comprehending that DD's migraine was one continuous migraine for 16 weeks instead of getting one every day! They'd prescribe meds & tell me that she couldn't take them every day because of getting a rebound headache from them - they said she was only to take them when she got a headache.

I realized I didn't describe my auras. They have always been the spots/checkerboard pattern, but pulsing....faster than my heartbeat though. These spots weren't like floaters, because they overlaid everything. They don't move away when I look at them. Then everything would get washed out looking - very pale, almost no color to the point everything would look almost white....which just added to the whole problem with brightness.

About 20 yrs ago I stopped getting the migraines when my kids were born. Then about 10 yrs ago I noticed that I was often waking up with what looked like the aura spots. But it was weird - the pain never followed. :confused I talked to my eye doctor about it & he called them "occular migraines" & told me I was extremely fortunate that I don't have the pain with them. I've noticed that whenever I get these my blood sugar is very low - under 50. (I've been diabetic for 33 yrs.) This doesn't happen every time I wake up with low sugar - but if I see the aura I can guarantee my sugar is low. No one seems to know why though.

Another thing I haven't heard anyone else mention...

When I had a migraine & eventually went to sleep in a dark room, I'd frequently wake up the next morning without the ice-pick-through-the-temple. Basically no headache at all. But if I could feel a tightness or pressure in my neck at the base of my skull, I'd know that I'd have the migraine again that day...usually within an hour or so. Does anyone else have anything like this? With the one DD had this Spring she didn't have this...it was the same around the clock, but both of my sisters have a similar sensation.

 

[Tigger&Belle]

I tend to have tightness in my neck when I have a headache, but it's kind of like a chicken and the egg thing...I don't know if I tense up my neck when I get a headache or if I tense up my neck first which brings on a headache. I know that at least one DISer has tried a muscle relaxer because they've noticed the tightened neck muscles.

 

[bavaria]

piratesmate, your checkerboard aura sounds similar to mine but you describe it much better.

Am I the only one who gets the tingly finger first? it's odd because my aura, numbess, and pain are usually all on the left side, but it's the RIGHT finger that usually tingles.

I am still convinced that going off Topamax somehow had a role in the return of my migraines. I have a lot of nerve damage on my left side due to a car accident; hence the Topamax to reduce some of the tremors. I just don't want to go back on it due to the side effects (ok, the weight loss was great, but the stupidity wasn't....)

Sounds like several also get the 'migraine hangover' ie headachy etc for a few days afterwards?

 

[bavaria]

I tend to have tightness in my neck when I have a headache, but it's kind of like a chicken and the egg thing...I don't know if I tense up my neck when I get a headache or if I tense up my neck first which brings on a headache. I know that at least one DISer has tried a muscle relaxer because they've noticed the tightened neck muscles.

Someone else mentioned on another thread that their child had migraines and was a tooth grinder; getting a mouth guard ended the migraines. I have tried a number of different mouth guards and even wore a jaw splint inside my mouth during the day for a long time due to jaw issues, but that didn't seem to help or hinder much that I noticed.

 

[Magickndm]

Sounds like several also get the 'migraine hangover' ie headachy etc for a few days afterwards?

Yes, absolutely. The day after I feel like I was hit by a truck. I'm almost as useless the next day as I am when I have the actual migraine.

 

[Kimmielee]

My first migraine came with my first period. My parents were in KY for a funeral and I was with my SIL (she was 19 at the time) and I thought I was DYING!! They continued pretty steady on a monthly basis until I became pregnant with my son - now they are random.

My aura (when it's not a migraine I wake up with and YES I dream I have a migraine when I wake up with them too!) is floating lines...and more recently, some have started with what has been diagnosed as optical migraines.

The first time I had an optical migraine I was freaked out. I was sitting in a restaurant with my son and this man walked by. He literally had half a face. My first thought was "that poor man" how can he function with 1/2 of a face? Then I looked back at my son and he only had 1/2 of a face too. I couldn't function, started breathing rapidly thinking that I was going blind... tried blinking my eyes, resting my eyes, trying to NOT freak out my little man... then it passed. It felt like forever but was probably a matter of 5 minutes. Major migraine came one instantly.

I made an appointment with my eye doctor and I was scared to death to tell her of this very strange episode. She asked "how I've been" and I said... "Well, something strange happened the other day." She responded, "Let me guess, you saw people with 1/2 of a face." I was so shocked!! She said with my history of migraines it could happen... she was hoping it wouldn't.

I've had 3 of those episodes in the last year. Thank GOD, I've never been driving but each episode lasts longer. The last one was almost 20 minutes.

I would give my right arm to guarantee that my son doesn't inherit these monsters!

Oh, medicine wise.... I've taken so many different things, become immune to them... now I live and breathe by Aleeve, which is an over the counter lower does of Naproxen, the last migraine med that was tried.

Thanks to the OP for starting this thread. Very interesting to read!

 

[DVC Jen]

Mine are definately tied to my hormones..although weather changes and stress can also trigger them.

They usually start off feeling like a sinus headache but continue to get worse and I so far I have found NOTHING that helps other than just going to sleep.

The worst ones are when I am lying there in bed thinking.. if I so much as move my foot I am going to vomit. Luckily for me they are not normally that bad every month. Usually I can just lay down for a few hours of some serious sleep, wake up feeling like yes i have been wrestling a mac truck, but then they get better.

 

[SunFloridaDisney]

My DS 17 gets them, and apparently they are somewhat common for teenagers. (with girls they definitely seem to be tied to the cycle)

He had missed many days of school over the past few years and finally
went to a headache clinic at Children's Hospital where they asked him questions about his diet, activities, etc. etc. He also had to journal his headaches, noting any patterns, time of day, etc.

He can usually control them if he takes medicine RIGHT AWAY. Usually 3 Advil plus a Gatorade works pretty well. (they told us this helps speed the meds through the bloodstream helping them work quicker) He has a note on file at school that he needs to be able to take this immediately. He also has tried Maxalt but didn't get much better results than the Advil.

 

[bavaria]

SunFlorida, totally off topic, but are those the Louisville fireworks in your sig? I missed them last year by a week - look amazing!

 

[Missy Mouse]

At what age did you start getting migraines?
Are they linked to a cycle? (ex: getting your period)
What are your "auras"?

Dh and I both get them. DD12 seems to get a lot of headaches but just deals with them or takes some Advil or Tylenol. Today she came home from school and described my aura to a "T".

The earliest I remember is 6 years old and they were not linked to my menstrual cycle. I knew I was getting a migraine because I'd get a dull ache in one side of my head, and then I'd see lightning flashes around my eyes and things seemed far away. Finally I'd lose my vision completely to the lightning flashes with black around them. The only thing that made them go away was sleeping, and even the next day I still felt drained and tired. I was on migraine escape meds like Imitrex and Maxalt, but nothing worked. I did discover my own cocktail that DID help. I took one Aleve and one ibuprofen. For some reason, ONLY this combination took away the migraine, and it worked fast for me. Thankfully my migraines are down to about one a year. At my worst they would occur four times a week!

 

[allie&mattsmom]

Yes, absolutely. The day after I feel like I was hit by a truck. I'm almost as useless the next day as I am when I have the actual migraine.

Me too! I am just physically (and mentally) exhausted!

 

[maxiford812]

I started getting migraines in my mid-30s, when I went into premature menopause. Before one starts, I notice that I can't focus my eyes to read. They always last for 3 days. I also have the "hangover" feeling for an additional day - sort of confused and numb feeling.

Chocolate is one of my triggers. I haven't eaten any for about 6 years now. Why couldn't it have been brussels sprouts? Imitrex worked at first, but the headaches started coming back a few hours later, and my chest felt tight when I took them, so I had to stop. What has helped me is Botox injections in my forehead. My husband was talking to someone at the gym who had migraines and was being treated with it. I have gone from being out of commission 6-9 days a month to only having a migraine once every 2-3 months. It's been great except for getting the shots themselves. But a minute of pain is better than days of pain.