Hi, I am brand new to this site, having just discovered it existed recently. I have never corresponded online before, but I welcome any advice/support/suggestions.
I have suffered with migraines for 35 years (could it be that long?). They started in my early teens and haven't quit. I've been treated by the same neurologist throughout. The pattern has changed on and off, depending mostly on how much stress was in my life (big trigger for me). In 2004 I was in a car accident and injured my neck, resulting in an instant painful headache. I assumed it was the stress of the accident and extreme stress going on at home. I never did go to the hospital, my husband told me I would "get over" the escalating pain. A year later, while visiting my neurologist, he said my symptoms were completely new for me, something was different, and ordered an MRI, which showed the neck damage.
Since then, I've had numerous tests,tried various remedies, the damage remains, and surgery is not an option. At this point I have a never-ending headache, with several migraine symptoms almost every day. Occasionally, I have a migraine free day, but the headache remains. Usually, the migraine lasts three days continuously if Imitrex doesn't work. I only take Tramadol for the first day of an attack, then discontinue all meds so I don't worry about rebound. I just wait it out. Once, I had a 21 day migraine. I have now tried my 6th cervical epidural. Not much help. I can't lie down with migraine, it intensifies the pain.
Any suggestions for coping?
Thanks for your time and attention, I greatly appreciate your help.
I went to my doctor today for a cough and bronchitus and he asked if I had anymore questions.; I said Yes, he knew I had a Migraine so I asked him if there was a way to find out if my hormones were way out of wack; He said that I could have a blood test and that would let us know the estrogen levels and other stuff.
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Glad to make your acquaintance. I'm sure some of our members who have had bad migraines for a long time will be by to greet you, as well as people whose migraines got worse following an accident. My heart goes out to you.
As for coping, I'd suggest you visit our discussion forum. That in itself will probably help you cope; the support is wonderful. In particular, I think you would enjoy a thread under the "Questions and Answers" thread called "What is in your toolbox?" In that thread, a lot of people have shared their "first aid" ideas for coping with migraines.
To get to the forums, click on Migraine Forums under the orange Manage bar. Registration for the forums is separate from the registration for this page, but you can use the same info to register for the forums. We'd love to have you. I think you will be surprised how much reliable information you will find on this site, and how responsibly people behave on the forums. If you are new to communicating online, this is a great place to start.
Good luck with your migraine management.
Hi nutcracker1, thanks for responding. Your suggestion to join the forum was a great idea, and thanks for the instructions. This weekend I will give it a try.
Being perimenopausal is tough enough without added headache complications. I am also experiencing this and never thought to consider how it impacted my escalating migraines--I guess the neck injury is so prominant that all else falls into second place.
Please let me know if you've discovered any correllation and what it might involve.
Hi nutcracker1, thanks for responding. Your suggestion to join the forum was a great idea, and thanks for the instructions. This weekend I will give it a try.
Being perimenopausal is tough enough without added headache complications. I am also experiencing this and never thought to consider how it impacted my escalating migraines--I guess the neck injury is so prominant that all else falls into second place.
Please let me know if you've discovered any correllation and what it might involve.
Hope to hear from you again,
Susan.
Talking about being perimenopausal is hitting the nail on the head (pun intended) for me, as well as some others who use this site. I had migraines in conjunction with my periods throughout my young adulthood. Since they occurred only at that time, regular as clockwork, and controlled down to zero with ibuprofen, I never sought a diagnosis.
When I became perimenopausal, the migraines swung wildy out of control, and the ibuprofen quit controling them. Currently I see a neurologist, and I take Inderal, magnesium, and Vitamin B2 as preventives. While I've made a lot of progress, I'm hoping to reduce my frequency still more with my neurologist's help.
Quality of life CAN be improved for nearly all migraineurs. It takes a lot of time, patience, and trial and error. It's important to work cooperatively and assertively with your doctor.
I'll be looking forward to seeing you on the forum.
Have you looked into what a hysterectomy might do for you? I can't really recommend it, since I have no experience with it myself, but I've heard of women's headaches virtually disappearing after a hysterectomy. I feel badly for you having them every single day. Mine have decreased since menopause, although barometric pressure changes and too much chocolate will certainly bring one on. I hope you are successful in finding something that helps you.
Can anyone out there reading this comment on hysterectomy?
Yes, I can comment a little on the idea of hysterectomy. I do have one friend who had hormonally-triggered migraines (far worse than mine) throughout her young adulthood, and they swung wildly out of control when she became perimenopausal. She tried a number of different preventives; they either did not work for her, or she couldn't tolerate them.
Finally she decided to have a hysterectomy. Fortunately, it helped her, and the migraines decreased to once every couple of months.
However, this is not everyone's experience.
Some people find that hysterectomy actually makes their migraine situation worse. And once you've taken that step, it's not reversable. So each person must make their own decision--it does help some people--but I'm not going there. I have already made a great deal of progress with preventives.
Thanks for your insight, nutcracker1.
It's funny how migraines/headaches seem almost tailored to each individual, so that not all of us have the same triggers, nor the same experiences with medications. I suppose there are some symptoms common to all of us---- such as PAIN (duh), but everything else seems to be of an individual matter.
Anyway, hysterectomy obviously isn't the answer for everyone, but I'm glad you could comment on it.
Trial and error seems to be the name of the game. I know it has been for me for the past 30+ years. What's really bad is if you're a slow learner!
Also, I have found that the medication I try depends on what I believe to have been the trigger for headache.
Like, if I think the trigger is weather, the first thing I try is a decongestant + pain reliever, like Fioricet.
If the trigger is an allergy and the bridge of my nose "hurts", I reach for 2 Midrin + a Vivarin... or if it's at night, a dose of Nyquil.
If the trigger is [was] my period, I tried either Midrin or a Frova.
3 years ago when my headaches were still manageable, I also treated for specific triggers, and it worked pretty well unless I then delayed taking my imitrex long enough for it to work well (or at all).
Now that I'm having daily headaches triggered by my neck, that isn't an option. Though if I get a horrible tension headache on top of the ususal one, I do opt for the tramadol. What I have a concern about is the frequency of taking the medication: I was told to take the above meds no more than 2-3 days a week to avoid rebound, which I do (religiously). But the result is that I am in pain (sometimes severe) for 4-5 days each week.
Anyone have any suggestions?
(I updated my list of medications on my profile, having just started lamictal as a preventative)
It's good you are aware of medication overuse headaches and are trying to avoid them. People who have been in MOH say it's no place to be!
In many cases, you can use two different classes of drugs, each two or three days a week. For example, a triptan two days, and a painkiller two days. Check with your doctor. Using two pain killers, each containing acetaminiphen, could still result in MOH. So check with your pharmacist as well for "medication overlap," if necessary.
In all cases, of course, follow your own doctor's orders.
In comments below, I notice you are making some changes in supplements you are taking. I can certainly understand wanting to go that route rather than "medications;" I felt the same way. But be sure to let your doctor know about the supplements you are taking. In some cases, they can interact with your prescription meds and cause problems. In all cases, your doctor needs to know exactly what you are taking.
It's great to see you over in the forum, too. Keep up with us over there.
Thanks so much for the heads up on frequency of taking medications. I've always been super-conservative, but perhaps I've been too conservative to take my medications frequently enough to be of any help at all.
I do bring a list of all medications, including supplements, to each doctor's appointment. Beth Israel Hospital in Boston recently implemented a procedure in which each patient gets a computer printout of medications and supplements they are known to take, and to update it with a nurse before seeing a doctor.
Of course, I will run the frequency issue by my doc and get his recommendation. I don't have a scheduled appointment until summer, but I am in contact with him between appointments.
I am amazed at the variety of topics covered in the forum, and haven't had a free moment to peruse all those that might apply to me. I am excited that a new medication I'm trying was mentioned, and I look forward to hearing from others who have experience with this.
Again, thanks for your guidance, you've been such a great source of support,
Susan