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I am a 65 yr old Australian woman, living in Aust, who has suffered with Hemiplegic migraine for nearly 25 years after having a brain tumour operation. My history and management follows but I am trying to get answers for why I have had such serious reactions to flying East/ West through 10 time zones to Italy and then back to Japan..
Although I was never allowed to fly East/West to Europe or the Americas, I was allowed to fly North/ South to Japan. My GP o.k.ed this trip because I had been so well and the op was 25 years ago. I severe insomnia, my head ached, I had ataxia, disorientation , plus the ever present photophobia and phonophobia... plus depression. In the 2 months I stayed in Rome I had another bout of bronchial asthma, which I hadn't had for 6
years, and was terrified of my flight back to Japan where I live for 4 months of the year.
I'm in Japan and It's now day 12 and my struggle to adjust to the time zone difference has been much worse: I still am unsteady on my feet but the leaden legs have almost disappeared. I am still waking every 90 mins to pass urine after an initial sleep of 2.5 ~3 hrs. My bowels still open during the night and then I can't get back to sleep. I am just exhausted and I guess depressed. I occasionally take 1/4 of 15 mg of Serapax to help sleep although they make my hands tremble. I can't tolerate most medications.
Is there anyone out there who has experienced these side effects from jet lag ? Or perhaps a health professional who has knowledge and an understanding of my reaction and can explain what is happening in my head.
I am also interested in having a dialogue with anyone who has all of my Hemiplegic Migraine symptoms...... I am sure that I cannot be the only one .I have permanent photophobia and phonophobia.
I woke from the brain tumour op with severe photophobia and phonophobia ........ and that was the beginning. The tumour was a meningioma and it encapsulated and blocked the Sagital Sinus. They could only get 75% resulting in my having to have 3 months of daily radiation.
I was rushed to hospital several times in the first 3 years with a" stroke" but the CAT scans proved negative. They always start with aura, progressing to hemiplegia on my left side and finally ataxia. I was tested for "everything" but as the Aust. neurologists couldn't "find " anything, I was told to take 5 Disprin direct to thin my blood when the aura started, get into a dark space and basically cope..... and that's what I did. Hemaplegic Migraine was not known at that time, certainly not in Oz.
I lived with continual pain behind my ears and on the top of my skull and attributed it to a life with 4 small children, running a business, an unsupportive husband, trying to recover my speech, my left side's weakness with my l arm and leg and my permanent baldness from the radiation. I used to go to the cancer council's brain tumour support group when I was depressed, and I would leave elated, realising how lucky I was that I wasn't drooling and looked reasonably normal.
A brain injured person suggested I try " Cranial Sacro Therapy" with a British trained physiotherapist because of the relief he had gained he had gained from her.. My neurologist was ambivalent. I owe my sanity, "health", and pain relief to this woman...that was approx 22 years ago. For 6 months, I had weekly appointments, then monthly for the next 12~14 years, and then bi -monthly..... I still see her.
My GP, who is holistically orientated, was supportive and helped me through the maze of "competing" specialists and helped me "own" my health . I actually had a stroke in the cerebellum and that's how they found the brain tumour.
Alone and without any knowledge that there was a hemaplegic migraine condition, I learned to manage my attacks and by trial and error, worked out the triggers. I've slept with earplugs for 24 years for the phonophobia. I avoid fluorescent lights, shopping centres, fireworks, oncoming headlights, glass walls and elevators in tower blocks (add vertigo to the list), computer screens, strobe lighting, drumming and thumping bases, stress, crowds etc.etc I wear dark glasses and a brimmed hat even at night and have lived with negative comments and disbelief from the general public who do not know my health history....... they think i am just eccentric. I do not look sick and I am very private about my health except with family and close friends. Various sports, dance, physically challenging exercises and brain exercises have been part of my daily regime and health management since about 1 year after the op and stroke. Healthy eating has always been a priority .... I do not ever eat junk food...... although I love black chocolate and a glass of red.
I wasn't able to use a computer until my son discovered that when he rested his Apple computer on the lowest emitting light source it did not hurt my head..... we bought an Apple the next day...... that was 11 years ago. Apple now have a capability to write white on black with a greyscale called "Universal Access" which I use on the lowest setting..... it is far softer on my eyes ( head). I only use black on white for looking at photos.
Imagine my surprise and elation when after a particularly nasty attack 4 years ago and full of "Why me???.... haven't I suffered enough?" I found Migraine Action on the web and realised I wasn't the only person in the world. I had every symptom except vomiting and becoming comatose. That moment still brings tears to my eyes. Knowledge is empowering and I haven't had an attack since. I had my condition confirmed by a Migraine specialist soon after who wanted to put me on experimental drugs. I declined..... he really knew very little about the condition.
I have not been able to lead a "normal life" because there have been so many exclusions. However, I have lived a very full life taking advantage of the things I could do.
I empathise with all migraine sufferers but please do not contact me unless you can offer some real knowledge of my current predicament . However, I would like to have a dialogue with someone who has my Hemiplegic Migraine symptoms .
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