Almost 2 years of feeling "normal", and then, the last few weeks of
January, my allergies kicked up. Those imbalanced feelings only started
getting stronger. I verified with my PCP that this was indeed a
re-occurrence. (I was hoping the Mal de Debarquement was nothing but a distant memory.) No such luck.
This
time is a little different though. I don't have a constant pulling
sensation on one side of my body. Now its more of a swaying and bobbing
sensation. Its irritating. It always seems like I have this low-grade
headache. Concentration and short term memory seem to be out the window,
and most days I think "how much longer can I deal with this?". I try
to remind myself that there are so many worse things I could be dealing
with than MdDS. It is a struggle though, and I wish I would just hurry
up and go back into remission and stay there.
I've tried eating
Primal again. Sometimes it really sucks. Its hard to plan meals, and I
really miss freezer pizza and other "easy" meals. It's also back to
chiropractic care, and next month I'll probably start up acupuncture
again, but I just need to plan it for a day that I can take those "flu"
like symptoms for the first session. I'm trying everything I did
before. Eating a primal diet, vestibular/ eye exercises, and even the
supplements.
Speaking of supplements, one of the forums I belong to mentioned passionflower to use instead of a benzo. I only used benzos (Diazepam) in the very beginning the first time around.
I'm not sure how much it helped except the first few days. Besides I'm
really not much on traditional pharmaceuticals. Many people said
passionflower really helped when they were having a "bad" day with
extreme symptoms, or traveling. Maybe I'll have to check it out.
In
another forum I belong to, someone said essential oils were helping her
symptoms. Ginger, Basil, and Frankincense. I already belong to Young
Living oils thanks to my Mother-In-Law, so I immediately jumped on that
band wagon and ordered them up. Again, I think it helped initially, but
now I'm not sure its doing anything for me.
Work takes on a whole
new meaning for me now. I like my job mostly as far as jobs go, but its
a catch22. The lighting definitely doesn't help my headaches, its
moderately stressful, but it keeps me busy and sometimes so busy that I
don't feel my symptoms as much.
Most of my days are 3-4 days or
5-6 depending on stress levels, and what I eat. (Low inflammation seems
better.) Often I have a low grade headache even though my symptoms are
low. Bad days are a 7-8 and I have had a few of those, but generally the
7-8 only lasts for a few hours, and mostly occur first thing in the
morning or at night when I get home from work. Only one day that was for
sure a 10. It literally woke me up! I had a dream that started out as
feeling like I was in an earthquake and suddenly turned into a tornado. I
woke up and everything was rocking and bobbing violently. It felt worse
than the 15ft swells from the reminisce of Hurricane Sandy in the back
dining hall of the cruise ship that I got this from being on. This one
lasted for about 5-6 hours.
Finding a cure would be fabulous and
everyone of us who have it are praying it happens soon, but since very
little is known about Mal de Debarquement, there aren't that many
researchers studying it. Most Doctors have never even heard of it
before. There are "treatments" at Mt. Sinai,
but it hasn't worked out for everyone... and supposedly there is still
danger of re-occurrence. I wish I knew what caused it exactly... and why
is it mostly women? They say it isn't hormone related. Sure seems like
that must have something to do with it. Maybe if we knew what cause it,
it could be prevented or even cured. For now, I know I just have to live
with it, but if I could manage the symptom so all of my days were 1-2
or 3-4. It sure would be nice to have some normalcy back.
If you would like to know more about MdDS (Mal de Debarquement) please click the link below.
MdDS Foundation
I too suffer from this rare motion sickness disorder for over 3 years. I got mine from a cruise ship originally in 2009 for 6 mo., then in 2011 from an airplane, and then again in 2015 from a raft on the bay. I am a woman and it started when I was 48, now I'm 57. I'm using my husbands computer so that's why it says jason454567@gmail.com. You may write to me at AmberLilly777@hotmail.com if you want to talk about this condition. I have had every test known to man done to me by Neurologist that specialize in vertigo and no help. :( I have contemplated going to New York to try that treatment at Mt. Sinai but haven't tried it yet. I feel your pain as I too think it's hormonal related since mine started at perimenopause. I too take Diazepam at night which helps sometimes. I too feel like there is no hope but know that there are worse things I could be dealing with. Good luck to you. Thanks for posting. At least we are not alone.
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