Chronic Headache Online Support Group

I am new to the forum, but from what I have read so far, I belong. I have been suffering from migraine, icepick, and tension headaches since 2008. I have tried almost every medication available, botox, acupuncture, massage, bio-feedback, and chiropractic care. I have seen 5 neurologists that have all agreed that there is nothing further to explore. Preventative medications have not worked, so I am currently on a PRN basis. On a good day I rate my pain at a 2-3 and on a bad day 10+. I seem to bounce between tension headaches, that are almost daily, topped off 2-3 times a week with a throbbing migraine, followed by icepick headaches that occur whenever. Is this a normal cycle for people in our situation? Before a migraine attack I act like I am drunk. My speech is slurred, I get aphasia, hands tingle, can't think, and can't walk a straight line or stand up without falling over. Anybody out there get these symptoms? I have had to stop working full time, and after a year off, have just started back on a part-part time basis. I know that my going back to work is not a smart move as i am a nurse, but i cant stay at home and talk to my dogs anymore! ( no they don't talk back, I'm not that crazy!) Any ideas on how to cope, would really like my life back. I know that I am not alone, but it sure feels like it. It is too hard to explain to non- headache friends/family what a struggle it is everyday both physically and emotionally. Would love to hear any feedback.

Argh, forum ate my response.

Anyway, welcome! It sounds like you're dealing with a lot. It can be hard, especially when no one gets it. I think because ordinary headaches are so common, everyone thinks he or she is an expert, and that they can generalize from their occasional hangover or dehydration or stress headaches to more disabling headaches disorders. There are also a TON of folks with self-diagnosed "migraines" out there -- the kind who can take some "Excedrin migraine" or other over-the-counter thing and go on with their day.

Your neuro symptoms sound particularly awful. Here's a nice technical overview of different migraine variants: http://emedicine.medscape.com/article/1142731-overview#a1 It sounds like you might have hemiplegic or basilar migraine, but I am not a neurologist. I think you deserve a neurologist, maybe a headache specialist, who has some fresh ideas for you.

Finally, working in healthcare has its own challenges! There's such a culture of never calling in sick (because someone else will have to come in on a day off and cover for you), that people just keep working through all kinds of illness and disability. (I'm an ER resident, so I have some firsthand knowledge of this).

Thanks for the website, I'll check it out.

I'm a disabled RN with persistent idiopathic facial pain. I've been out of work going on 7 years. I had to stop working because the pain (right facial, somehow connected to the trigeminal nerve but not trigeminal neuralgia; MRI and MRA negative except for dominant anterior circulation) got to the point that I couldn't drive, much less function in a work environment for 12 hours at a time. It tore me up to have to stop working. I had just started a job I adored, at a great hospital with fantastic bennies, with great pay and as a float nurse I picked my own schedule rotating between women's health and mom/baby as needed. Finally after 15 years of penance I was where I had dreamed of being....and then the migraines I had struggled with since I was 16 turned into the horror of constant incapacitating pain.

I felt useless, angry, sad, mad, scared....you name it. Our plans for the future were destroyed. Our small retirement savings account is gone. We live month to month. We had started saving for a dream trip to Australia and then the transmission on my car went bad, to the tune of $1600 worth of work; goodbye savings. Two of my 3 adult kids from my first marriage are struggling to pay the bills and feed their families so most of our extra money goes to help them out.

Take it a day at a time. Plan for the future, but make a contingency plan as well. Accept your situation and make the best of it. Most importantly, don't beat yourself up because you're ill. It's not your fault. There's not a lot of information on our condition. There are no cures. Most often, it's a matter of treating the symptoms. I'm to the point where pain control is about as far as we can get. Unfortunately being on the meds I'm on absolutely erases any chance of me working unless a miracle happens.

Find things to do that make you happy or content. Do you have hobbies? Those help a lot. Massages; chiropractic treatments; relaxation; prayer or meditation; moderate exercise; time with your significant other...any way you can find to make yourself feel good and relax will help. Grab moments as you can. Don't feel bad if you can't do what you used to. That's part of the process. Take it slow and easy and don't push yourself - doing that makes it worse.

Accepting the situation is the most important thing you can do. It will help you in the long run more than anything else.

Thank you for the feedback. It's nice to know that I/we are not alone. (not that I wish this struggle on anyone)