Hi Amber-

Sadly and happily, there are tons of us who are in the same boat as you.  I myself have been an episodic migraineur [once or twice a month] since 9; about a year and a half ago I got one that never went away, and now find myself having anywhere from 2 to 7 migraine episodes every day.  I'm being treated at one of the best headache centers in the country [Jefferson Headace Center], but still after a year of hospitalizations, tons of different preventatives and abortives, I find myself struggling to get through each day.

My advice to you would be to see a neurologist if you are not seeing one now, and find out what headache or pain centers there are near you.  There are so many different treatments, and what works for me/others may not work for you.  Most important is to find a doctor that you can really talk to and that you feel is listening to what you're saying.  It sounds like a preventative will be in order for you and with your frequency, you want to make sure you're dealing with someone who is informed and experienced.

Best of luck to you!!  We know you're struggle and you are not alone!!

-Sara B, Chronic Migraneur since March 2011

P.S. Social media helps a lot!  Get connected with others who are going through the same thing!  Facebook has opened a world up for me and lead to many different information sites and wonderful people.

Amber

7/20/12 1:20pm

Oh my goodness. 2 to 7!? I couldn't imagine! The most I ever got was 4, but that was only because I was on Fioricet which my brain became 'addicted' to, essentially. So my neurologist took me off of that and now I can only take it if my other abortives don't work. Well, that was before I had my seizures, now I just take 800mg of Ibuprofen and Coke.

 

Your situation sounds insane and I don't know how you did it. I'm having a hard time now, and you have been through so much more than me! I give you some serious props, and even though I don't know you personally, I look up to you! Thank you for all the advice and awesome outlooks. I'll have to search through Facebook and see what I can find. Again, thank you so much!!

 

Dawn RN

7/20/12 7:24pm

Sara,

I see Dr Young at JHC. I had 14 years of chronic Migraine...more often than not, they were 24/7 and averaged about an 8/10. Then in March 2007, after my 17th HA hospitalization, I became HA free "permanently"! It does happen, sometimes you have to be really, really patient! Now I get fewer Migraines that I did before they became chronic!

 

Amber,

Sad to say there is a huge population out there with the same problem! Find some support groups online and see which one you're most comfortable with. AND get yourself a Headache specialist or at least a general Neurologist if you haven't already!

 

~Dawn

Yep.  At least one a day, though it's hard to number them - it's more I've had the same headache since my Freshman year of college and it just stayed for the past 15 years.  I've had classic migraine with aura since I was 3, and right now it's a question of whether I'll have a teeny little headache that goes away with OTC medication, or something that'll send me to urgent care for a shot.  I eat a very restricted diet (btw, be suspicious of FD&C red dye, maltodexterin, MSG, and Aspartame.  They don't make a lot of the trigger lists, but they make a lot of people get migraines.).  I take supplements and keep regular hours, and I'm very careful about my meds.  I'm one of the small percentage of patients not helped by stopping pain meds, and I rebound off triptans, so zomig et al have to be saved for emergencies.  Right now, I take way too much excederin, but I support a family and if my pain isn't controlled, nobody eats or pays rent.  My doctor's working with me on preventives, and we're hoping that eventually something will work.  Right now, I'm stable enough that I sleep at night and don't need too many pain interventions during the day - a major victory!  You have to take your own personal victories for what they are.  It's rough and people don't get it, and it's hard to find doctors who understand the need for adequate pain control, but hang in there and keep trying stuff until something takes.  And don't let anyone tell you it's your fault because you're not trying hard enough; as long as you're complying with treatment and going back to your doctor and educating yourself, you're trying hard enough.

Hi Amber,

   As a friend of mine likes to say, "normal" is just a setting on the washing machine. That said, for many of us, multiple migraines a month are normal, unfortunately. I average around 24 a month, some lasting a couple of hours, some lasting three days. I'm 35 and have been having migraines since I was 15, and it seems that with each year they get more painful and more frequent. In terms of preventative meds, I'm on Lyrica, which also treats my fibromyalgia, and I'm on the Depo-Provera shot, to prevent changes in menstral hormones from aggrevating the migraines. Unfortunately, none of the triptans work for me, so I rely on Vicodin or tizanadine to break a migraine. If I have a migraine that lasts more than 2 days, I head over the the ER. I try to focus on the silver lining- I thoroughly enjoy the days when I don't have a headache and try to get as much done then as possible, so on the days when I am sick, I don't have to stress over what I'm not getting done. I also stay in close contact with my neurologist, who specializes in migraines, so as soon as something is approved by the FDA or he learns about any new treatments, I'm one of the first to know. I also keep multiple ice packs handy, peppermint or eucalyptus candles (helps keep the nausea at bay), and ear plugs close to the bed. Let your family, friends, and coworkers about your condition so when you have to call out or cancel last-minute, they understand why. I hope and believe that there will be breakthroughs in headaches and migraines sooner rather than later, it's just a matter of time. You're not imagining the pain (there are some pretty ignorant people and doctors out there), but most importantly, you're not alone. Best of luck, and lots of hugs.