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New here, my story

Post  GSDtravels on Sun Sep 18, 2011 11:42 am

Hello fellow sufferers! I'm a 54 yo female and have suffered migraines since puberty. I've had new developments in the past 7 years or so and am curious to know if anyone has had a similar experience. So, here goes.

There is a family history of migraine on my father's side of the family (my paternal grandfather suffered migraines, but he died when I was 2, so I had not familial sympathizers) and my father himself has ocular migraine, but no pain. My vision would pulse before an onset, but I never had a full-blown aura.

In my teens, I'd get a "period" headache the day before my cycle began and it lasted for the day, but wasn't what I would consider debilitating. I got married when I was 18 and had my first child at 20. After giving birth, I went into full blown migraine mode about once or twice a month (still experiencing my menstrual cycle headaches too). Unfortunately, my husband was not the sympathetic type and blew off my pain as an annoyance to HIM. I'd end up in the emergency room because the pain was unbearable, at times driving myself while stopping periodically to vomit.

A myriad of drugs didn't seem to help and I ended up taking fiorinal w/codeine on a regular basis when I felt one coming on. I also developed my own forms of relief, sometimes working, sometimes making the pain even worse. My most effective was to fill the bathtub with water as hot as I could stand it. I'd get in and the pain would increase and when it was SO unbearable, I'd get out and put an ice pack on the back of my neck. If it worked, it was almost instant relief, but if it didn't, I was in for a rough ride Sad

Then, into my thirties, my migraines started to decrease in frequency, but increase in intensity and within 5 years, almost disappeared! But wait...

I hit 40 and they came back with a vengence! I'd have one or two a week and started missing work on a regular basis. Around this same time, I discovered I had hypertension and was treated, but it didn't lessen the migraines, so back to Fiorinal w/codeine ~sigh~

When I was in my mid 40s, I had a very strange thing happen and to this day, have had no explanation for what it was, but it changed everything.

I started to get annoying headaches, but not debilitating and they were not my typical migraine type. I had lots of stress going on in that my youngest daughter was getting out of college, my marriage was deteriorating and everything just seemed out of control. One night during sex, (sorry for the TOO MUCH INFORMATION, but details seem important at this point) I experience a thunderclap headache of montrous intensity. I literally fell out of bed and he called an ambulance!

I did NOT consider this a migraine attack, although it was INTENSE pain, but it seemed to start at my crown and go down to my neck, totally different than my right side, behind the eye typical migraine. They kept me in the hospital for a couple of days and released me when the pain subsided. Two days later, the same thing happened and I found myself back in the hospital for almost a week, the pain never letting up! They did test after test and found nothing. At one point, I told the doctor that I couldn't live like this and if the pain didn't go away, I didn't WANT to live. They took this as a suicide threat and posted a "guard" in my room! Then came the psychiatrist who realized exactly what I meant and they backed off, thank goodness!

So, a week later they decided it was a migraine that wouldn't let go, despite me telling them that it was totally different than any migraine I'd ever experienced. They sent me home in pain and that ONE headache lasted for almost three months! It got to a point where sleep deprivation became worse than the headache itself because I couldn't sleep for more than 15 minutes at a time, the pain keeping me awake. I begged for sleeping pills and they refused, so I just had to learn to cope in a zombie-like state. I couldn't function AT ALL for three whole months!

When the pain started to subside, it was like getting a new lease on life! It slowly went away completely and six months went by with NO headaches.

Then, one day I started to see jagged, flashing lines all jumble together in my left field of vision and it started to grow into a wide "C". I freaked out and went directly to my doctor. He said it was an aura and looked at me like I was an alien because I had been experiencing migraines all of these years and I should have known what it was! He gave me fiorinal for when the pain started... but it never did!

So, since that time, I've experience the aura without the pain. Sometimes they're really bad, block out my vision, but I'd MUCH rather have that than the pain!!!!!!!

So, what in hell happened during that three month headache (which I STILL swear was NOT a migraine) that changed my migraine from pain to aura??????? NOT that I'm complaining, but I'd love to have a clinical explanation, which I've never gotten.

BTW, I'm finally divorced after 35 years of misery.
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Re: New here, my story

Post  Jewishmother on Sun Sep 18, 2011 3:48 pm

Part of the "joy" of dealing with migraines over my lifetime has been the changing symptoms.......there is a lot that I do not understand about my journey with migraines and it is difficult for me to accept that. Please remember it is always important to check out any new symptoms with an understanding doc. It may or may not have been the long-term headache or migraine that changed your symptoms.......it may be just the progression of your particular migraine condition.
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Re: New here, my story

Post  Tamsha101 on Sun Sep 18, 2011 4:53 pm

WOW! You've had a rough go of things! I'm sort of experiencing the same as you although my headaches were never as bad as yours. In a nutshell, I started getting migraines at age 16 - typical migraine with aura, pain, nausea, etc. As I got older my migraines decreased in frequency and severity. For the past ten years (I'm 46 now) I've been getting aura with NO headache. Sometimes I get the jagged "C", sometimes weird odors that arent there, heart palps, anxiety - if I get pain it's usually neck pain and in my upper back. Last fall I was blindsided with a new form of "aura" - horrible dizziness and tinnitus, to the point where I had to go on short term disability. I was pretty much housebound, the only relief I had was laying on the rug for most of the day/evening. I fell into a deep depression, lost 15 pounds, cried constantly, had awful anxiety, couldnt sleep - it was HORRIBLE. All my tests came back normal - MRI, cat scans, etc. My doctor and I tried a number of meds, I did acupuncture, accupressure, chiropractor, massage, you name it. I was diagnosed with chronic daily migraine variant.

SO....to make a long story short, I've been seeing a fantastic neurologist - took me 6 months to get in to see him. He said it's all hormonal (with maybe some stress thrown in the mix as I had been under a lot). He told me that throughout a woman's life they go threw 5 stages of migraine variances: 1) at puberty 2) pregnancy 3) perimenopause 4) menopause 5) postmenopause. He said the peri stage is the worst (which I'm in now) and women with migraine history really suffer. Most women after menopause see their migraines completely go away. He gave me the following instructions:

1) NO caffeine
2) NO artificial sweetners of any kind
3) Exercise at least 3 times a week - enough to increase heartrate
4) Drink lots of water
5) No painkillers of any kind (includes Advil, Tylenol) unless absolutely necessary to avoid rebound headache
6) Continue with massage therapy and yoga
7) Take 50mg of nortriptaline daily

It's been a month since I've seen him and I see some improvement. My dizziness and tinnitus have diminished, I'm sleeping better, I feel better. I still get daily symptoms but they are manageable for the most part and I'm back to work part-time. I do notice that I get a lot of anxiety still but that could be the hormones as well.

You are not going crazy! These hormones knock us for a loop and even worse when we're going thru the change AND are migraine sufferers to boot! I enjoy not having the severe headaches either but the auras can be just as frightening! Sorry for the long post. Feel free to private message me if you like.


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Re: New here, my story

Post  Mule Kick on Sun Sep 18, 2011 5:27 pm

Post menopause they do not go away, instead they get much worse.
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Re: New here, my story

Post  GSDtravels on Sun Sep 18, 2011 5:54 pm

Thank you for the responses and I guess you're right about the progression and changing symptoms. I had a partial hysterectomy when I was 39 (which is another nightmare, but I don't want to go into it at this point), so I never knew if and when I reached and/or passed menopause. During the height of the migraines, they told me that you usually go into menopause after surgery, even if you keep your ovaries, but they tested me and my hormone levels indicated I hadn't yet reached it, so your guess is as good as mine as far as that goes. My mother never had any symptoms other than cessation of menstruation and I guess I followed that Question

At this point, I have no medical insurance and couldn't afford any treatment, so I'm lucky that I'm pain free... hoping my luck holds out.
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Re: New here, my story

Post  marion on Sun Sep 18, 2011 6:26 pm

No one has ever explained the changes to me either GSD.

Aura to the point of black blindness 25-48 with not nice headache.

Constant headache and aura from about 48. Just always there, but livable.

New one at 50. Not much aura but hell headache.

Who knows? Changes in hormones, a neuron bursts, another opens??

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Re: New here, my story

Post  Tamsha101 on Sun Sep 18, 2011 7:00 pm

My neurologist, who actually teaches GPs across North America about women, migraines and menopause, told me that 80% of women who have a history of migraine can expect a total cessation after menopause. I'm hoping he's correct but with my luck I'll be in the 20% group!

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Re: New here, my story

Post  Jewishmother on Mon Sep 19, 2011 9:36 am

Tamsha - I hope so too! I once begged my neurologist to take out my uterus and her comment was that a majority of women do see improvements in their migraines after menopause but that with my luck I would probably end up in the minority. At my last gyn appointment I asked if I was perimenopausal (hoping for a yes) and he responded that at 52 I am still a healthy, fertile woman - he thought I would be happy with that news. My mother was in her 60's when she started to go through menopause so I most probably take after her!
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Re: New here, my story

Post  marion on Mon Sep 19, 2011 8:55 pm

In her 60's!!. At 50 I'm ready to slash my wrists if I don't stop cycling soon..
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Re: New here, my story

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