Reaction to 10 hrs Jet lag in person with Hemiplegic Migraine sufferer

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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.

My history:

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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  • Posted

    Hi there. Sorry to read about you and your experience with hm. I say firstly you have suffered a lot and have come through extremes and are a survivor.

    I had a tia stroke in 2009 and developed hm from there . There isn't mygraines in the family so it developed from the injury to the brain like yours. I cant fly far or long my speach slirrs and face droops . Like you I get lhs weakness sometimes so severe I loose all power to the affected side . So I won't go long distance as it would lead me to a hospital upon landing , which mean a trip back home to nz for a holiday is out.

    I went to the national mygraine centre in London and the specialist there said take 400 mg vit b2 a day and stay aaay from nurofen + and codine as the morphine in them magnifies the symptoms.

    Hm is a proper nightmare and by the sounds your as cronic with it as I am . I wish you well and I sincerely hope you find results and get the monster under control

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    • Posted

      Thanks, I will never fly intercontinentally East/West again. I will go to Europe next year but I will take the  Trans Siberian from Vladisvotok to Paris and then by train to Rome.

      A few questions: Does it make a difference if you fly through time zones as opposed to flying North/South?

      Is it the length of the flight and how long is the maximum flight you can take?

      Why did the specialist  reccomend taking 400 mg of b2? Was that before a flight or was that to take every day?



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    • Posted

      I fly to Japan every year  where I have a business. I should  start thinning my blood  with 1/2 a Disprin Direct  daily for 5 days before I fly. For a combination of reasons I didn't  do that this time. That wouldn't have helped with the  effects of jet lag though. Have you tried Disprin Direct...?that is the only medication I have ever taken. Margo
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    • Posted

      Hi margo. The longest I can fly is about 5 hours . I'm getting very symptomatic by then. The vit b2 is a preventer I take it every day . It has lessened the symptoms for me some what. I think my blood if I have an attack usually 300 mg as my symptoms mimic a stroke
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