Wow, Missy, I think you and I are sisters! But I have found my savior in Topamax, knock wood, and for the last 5 months have been Migraine-free for the first time since I was about 8 years old. I am now 50.
I have found that with my exercise-induced Migraines, if I took an NSAID like Aleve or ibuprofen an hour or so before exercising, my chances of getting a headache were greatly reduced. I can't tell you how many times I started to work out and had to quit because an aura started. But I didn't give up. I refused to get fat and lazy and give in the the stupid migraine. I also found that as I got my strength back, I loosened up and any stiffness went away as I kept exercising. I am a perfect size 6 and have been for several years now. I refuse to go back.
My theme song is from that great philosopher Tom Petty: I Won't. Back. Down.
Keep the faith and keep with your specialist. You will find your bliss.
califmom2,
Thanks for reading and for writing in.
I am SO VERY happy to read that you are doing so much better with Topamax. That is awesome! Topamax is a complicated drug in that some people hate it and some people call it a savior! I am so glad it works for you. Unfortunately, I fall in the category of people who hate it. I coudln't deal with the foggy brain side effect. The side effects of a migrainie on my brain are bad enough, but I was having such a hard time when I was on Topamax that it really scared me..it was bad for me! But you are an example of those it works for....awesome!!!!
Thanks so much for your encouraging words for me. I too refuse to get fat and lazy. I think that's why my attitude has been so lousy is b/c I've not been able to exercise. But I'm going to stay determined, talk to the doctor when I go at the end of this month, and do what I can in the meantime.
Your "post" came to me at just the right time. I sincerely appreciate. And I just went to iTunes and downloaded I Won't Back Down....I think I'm going to borrow your theme song. :)
Pressing on with faith in God, faith in my Specialist, and looking for my bliss!!!
Missy
I hear ya. Topamax, tegratol, depacote, maxalt, replast, imatrex, anatripaline.... the list goes on and nothing has worked yet. Got my food triggers nailed and smells, noises, stuff like that. Lost my job due to too many missed days (haven't been able to work a 40 week in over two years- boss hung out as long as he could, God bless him, but could no longer justify having me on the payroll)
I am eligable for unemployment but can't draw it because I am unable to work 40 hrs a week.
Neurologist is frustrated with me, not personaly, but because nothing is working.
I do excersize on the days I feel good, so about 4 days a week I get to move around.
Good luck!
So sorry to hear that you are unable to work. I wish you the best as you continue to seek treatment. Don't give up!! If your current doctor gets too frustrated, have an open mind about going somewhere else. I am on my second Migraine specialist. Actually, I am seeing a different Migraine specialist tomorrow, so I guess if I stay with him he will be my 3rd. This change was iniatied by my current Migraine specialist and the specialist is her colleage (within same clinic). Take good care and please keep seeking treatment!
Your story is my story, but mine started in June of 2000. They have been nearly everyday with few short breaks of a few days for a decade with many bouts of month long, continuous, unbearable pain! Last summer I was down to 1 day a week for most of May through September. Your comment about your shoes too loud reminds me of when it hurts to walk. I hate the pounding with every step.
You are right about lots of little causes, not a biggie to find. I went through every known medication and lots of combos. I had a severe psychotic reaction to Topamax. I don't have diabetes, but I am no longer normal. Thank God I only took Seroquel for a few months.
I am sorry to hear about your little girl not wanting you to lay down. I have been there and done that. Fortunately, our kids were out of the house by the time my dailies started. I dealt with the severe pain for several years and my wife and kids had no idea how bad the pain was until my psychotic reaction.
About 6 years ago a neurologist said he had reviewed my record and there was nothing else to try. Dr Aurora at Swedish also told me there was little hope and nothing more she could do. She is a leading researcher. She told me my migraine diaries were the most extensive she had ever seen in over 5,000 research patients. My attention to what was happening when I had a head ache start became the key to discovering multiple triggers. Remembering probable triggers of nasty headaches that occurred before the dailies started also helped. For example, I remembered having headaches after a 500 mile road trip long before they were daily or diagnosed as migraine.
I functioned very well in extreme pain for many years until the psychotic reaction. That disaster compounded the issues. I finally started pain control with methadone about 4 years ago. Getting the pain to tolerable levels so I was able to notice differences in pain and triggering events has been key to lowering the number and/or severity of the head aches. For years I did not know light was a aggravation or trigger because I was at such a high level of pain all the time, light could not make it any worse. I say headaches because, even though I have been diagnosed with migraines by at least 4 or 5 doctors, I also have symptoms of tension and cluster too.
Among the triggers and aggravations I have discovered are physical activity, light, sharp noise, bumps on the highway, unstabilized videos, some action videos, ice or cold water on the roof of my mouth, concussion on job sites, and probably a few I am not remembering right now.
I am currently watching atmospheric pressure, but I don't think it will be a trigger and have never been able to make any connection with weather patterns. I am beginning to watch getting up from bed as minor trigger as my BP changes. Discovering these triggering events with a lower pain level has been key to attaining lower pain levels and even a few weeks without daily pain. That was very welcome relief after a decade.
Last winter I was having my regular runny nose. I have had them in the winter as long as I can remember. I just accepted it with winter. Thinking I did not have any other cold symptoms most of the time, could it be a bit of hay fever or allergy? I started taking 24 hr allergy pills. After a few days without the runny nose, I began to notice lower pain frequency and levels. Leave no stone unturned.
I also take a multiple vitamin, Vitamin B complex, Vitamin E, CoQ2, Triple Omega and a couple Rx meds not applicable to others (see your Dr.)
My mother was told by a physical therapist to hold pressure on the temple where you feel you pulse for about 20 seconds. Gradually increasing the length of time and alternating sides for headache. She and her friends have found it effective for regular headache. I have had some success with it. I also hold pressure at another point of stronger pulse in front of my ear. I have definitely noticed a much stronger pulse during migraine and headaches. I knew there was something to it the first time I held pressure in front of my ear instead of the temple as I was definitely able to move and slightly reduce the pain.
I hope this gives you a few ideas to try. Uncovering a little one once in a while has been a successful journey for me. If you see a guy wearing 2 sets of sun glasses on a cloudy day, it is probably me. I wear one pair indoors and at night. I tried welder's safety style glasses but you cannot see red. That is a real hazard when driving. If a traffic light is not green or yellow it must be red, but no brake lights !! ?? ;-)) on the freeway!! ;-((
Good luck, TS
TS,
Thanks for reading and for writing a reply. Wow, you have been through a lot. Thank you for sharing your journey. I wish you the best in your journey to better health! Your words are encouraging because you have not given up. The way I see it giving up is not an option. Having said that though, I totally understand that some days it is much harder than others to have a positive attitude.
Take good care.
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Missy, your comments have hit directly on how I've been feeling lately. But with me I would need to be pain free from the lower spine up to my head including the neck and shoulders.
I went to the neuroloist yesterday, and he said for me to stay on the same medications even though they don't seem to be doing a darned thing. He added Effexor and I started it today, and I've been nauseated ever since I took the darn thing. I was also told that if a lost 50-75 lbs. that my headaches may just go away. My questions is how can I exercise when it makes the headaches worse, I try to do as much as I can but there are times it doesn't seem to be better, it just makes the pain worse. I completely understand your posting and I feel I'm right there with you but I'm having a really hard time with the positive attitude. Wishing you well.
RJW,
Thanks for reading and for posting. I know what you mean about exercising when you are in pain. I'm frustrated about that right along with you. I know I feel better when I exercise, but unless my head will tolerate the exercise I can't exercise. :(
I wish you the best in your journey. Keep in close contact with your doctor about the side effects of your new drug. I hope you see some improvement.
Missy