Hi! I posted a month or so ago. Just giving an update. Mine is very intermittent it seems. Possibly cycle related. I am 46 years old, female (obviously, "cycle", lol). I have a 9 year old daughter. And a very stressful home life.
I was a computer/IT person. Analyst and PM. I tried to go back to that job type and couldn't do it. Too much stress and the symptoms seemed to appear this May of 2015 from it.
First episode was at my then contract gig. Just had been standing and talking to someone for a while.. went to my desk, then got lunch, came back and sat down, ate a few bites and suddenly I felt off balance. Extremely fatigued. Went to the bathroom, tried to walk around.. felt like the floor was falling out under my feet and my legs felt like lead.
I managed, somehow, to drive home (after stopping once to get out and walk around). I had a 45 minute drive, about 35 minutes in to it I started to feel somewhat normal.
For the next few weeks I still felt off. In the meantime, I had a UTI, caused by what turned out to be kidney stones. Went on Bactrim for 3 days for the infection and that was a HUGE mistake. What was not a huge deal, turned into 3 weeks of a nightmare. Could barely get out of bed. Extremely nauseaus, very fatigued, periodic feelings of "shifting".
Finally passed kidney stone 1 and 2 between late September/early October. I still have one left I believe.
Symptoms are sporadic. I have maybe 2 good weeks a month.. USUALLY between when my period ends and when I ovulate. Then I have a dizzy day right before my period, extremely exhausted, etc. This month is proving me kinda wrong. Day 13 was Sunday. And I had two massive hot flashes in the morning. The whole day I felt "off".. very bad off balance, fatigued. Yesterday, my ears and head felt full. I slept upright on the couch (has a recliner built in). When I lie down I feel better yesterday and today. Upright, my head is full and I can't pop my ears.
THIS episode I think is a virus. My daughter has had sinus trouble for weeks. I think this is my manifestation.
THAT said, I think there is SOMETHING else going on. I am taking good vitamins. Supplementing with B12 daily to keep up energy levels.
I have had tons of blood tests, and let's see, 2 CT scans of the pelvis/abdomen for the kidney stones. Nothing of note except a lesion on my liver, small 1cm. Base of lungs clear. Pancreas looks fine. Blood tests all show normal ranges. "Should" be healthy as a horse. I asked for parathyroid blood tests because my calcium was 9.1, then a few weeks later, 10.2.. nope. Parathyroid is actually on the low side at 27.
I am trying a new primary physician and I demanded a thyroid panel, and she did hormone testing (FSH and some other stuff). Haven't heard back.
I did see an ENT a couple of weeks ago. BIG mistake as far as I'm concerned lol. She did the Dix-Hallpike maneuver. Only to the right because we had to stop the test as I had a major reaction on that side.. true vertigo (which is NOT NOT NOTTTTT what I've been experiencing). Full blown room spinning, nausea etc. So she says I have BPPV, wants to do Epley. Me? I want to do research.
So, BPPV is positional. I cannot narrow mine down to a position at this point. Maybe for a while I could? Seemed to be in bed rolling from right to left (makes sense, right side affected). Standing up from bed after waking (basically trying to get up too fast). I never got the spinning or if I did? It was literally for a second or two.
This is definitely a more total dizzy/off-balance/head doesn't feel right feeling. After reading about the Epley and reading it can make it worse I have decided against it. I have tried trying to trigger the BPPV and haven't been able to for a bit. I've been doing some basic side to side head exercises.
Other symptoms.. like today? My neck is ON FIRE!!! USUALLY it is the right side when it happens. Starting Sunday, it has been the left. Yesterday, no neck pain (back of neck by the way, not front) It literally feels like someone is holding a blow torch to my neck. Advil doesn't really help it much. I do work on the computer all day. I have for.. gosh.. 30 years? My shoulder muscles are super tight. I think that has a lot to do with what's going on. I think something is crammed up somewhere and causes blockages or weird signals.
I would like to feel better. I'd say I've been dealing with this since May. Although I had a few small episodes perhaps late last year after I fainted. Again, very stressed.. was standing talking to someone for a very long time. I felt like I had to go to the bathroom really urgently, thought I SAID that to her (which apparently I did not) and the next thing I know I'm waking up on the floor. She said I didn't "crumple".. I fell straight back, landing with my head smacking a solid concrete floor. She said I had what looked like a minor seizure after I hit the floor. Was taken by ambulance to the hospital. Given Zofran in the ambulance, twice, which succeeded only in making me violently ill (I was already nauseaus from the fall and hitting my head.. and I was in the ambulance backwards, which I get motion sickness from.. Zofran does NOT help nausea for me.. it actually brings it on.. second time that has happened.. happened when I had my daughter by C-section in 2006 too. Had a similar episode.. they gave me Zofran.. then gave me the spinal for the block for the surgery.. had me on a table.. They tilted like up and forward to the right, then back and down to the left, then up and forward to the left then the final back and down to the right and I was violently ill, threw up several times.. Note, same position that caused the Dix Hallpike reaction as well and I highly doubt I had BPPV in 2006.. I had been on bedrest, literally in a hospital, not moving, for 6 weeks.). Head CT done in the ER was clear.. blood work showed I was severely dehydrated (note, this is something I seem to deal with now too.. no matter how much I drink.. my urine activity still kinda looks like I'm dehydrated to a degree, always have dry/cotton mouth.. it's very weird.. but all kidney function tests and the CT and x-rays are fine, other than a small cyst and the stones).
Sorry I've written a novel here.. and the thread may not be active anymore. I'd be curious how the old timers on this thread and the original one (and I've read EVERY single post on both) did or are making out with this stuff.
Best!
I'm about to do the LP this week , which was your original
Post ? Trying to see if you had similar symptoms to me
Thanks
Sian77
I've read through the entire thread and am shocked that Mal de Debarquement Syndrome (MdDS) has not appeared once (that I saw, at least).
Anyone who is having false motion sensations ("rocking," "swaying," "floating," "bobbing"), particularly if the symptoms began following a cruise or other motion event (mine started a year ago after using an HTC Vive "virtual reality" helmet), should check out this syndrome. It is known to affect sailors and even military pilots training in simulators.
Unfortunately, I have been through the same path as most of you (ENT, cat scan, MRI, neurologist, chiropractor, naturopath, craniosacral, prednisone/meclizine/vitamin B, etc.) and nothing appears to relieve the symptoms, though, curiously, riding in a car temporary diminishes them.
If you get relief riding in a car, you are definitely a candidate for MdDS.
Sadly, most professionals have never heard of the syndrome, and there are few treatments (though there are a couple of novel approaches that appear to hold promise).
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Thanks Cynthia
Thank you in advance
Cherry
Hi everyone,
Thought i would give you all(whoever still reads this) my story.
I got all the symptoms everyone else has described in Jan 2017. I was a 26yo male and would get affected by the same headaches and pressure as most of you here. It all began during a period in my life where i tried to take on too many tasks at once, like buy a house and get a new job, but apart from these things, the rest of my life was great and stable. My weeks would start off fine, but by Weds and Thursday, the pressure build up would get so bad that i would have to pull over while driving, sometimes pass out. It was like i was in an airplane that had taken off, but i couldn't "pop" my ears to relieve the pressure. For the first time in my life, i would also begin waking up in the middle of the night for no reason and not being able to go back to sleep.
I thought i definitely had something in my brain like a tumour or a blockage, and after months of blood tests, CT scans and MRIs, the doctors thought i may have had either hypothyroidism or polycythemia rubra vera(blood cancer). Subsequent tests came back inconclusive, and to completely rule out the blood cancer, i also had a bone marrow biopsy. Again, this only further confirmed that i had no diagnosable illness and i was back at square one.
Doctors had me thinking that maybe this was all in my head, and that maybe i was suffering from anxiety or depression. Side note - i was not, and am not, suffering from depression. Life couldn't have been better in all facets bar this. I went to Europe for 5 weeks with my partner, and during those 5 weeks i had no issues whatsoever.
Upon my return, the issues began again and i was disheartened. I thought that maybe i was just allergic to work and needed a permanent holiday(who isn't though)? Anyway i was at my wits end, and a close friend of mine introduced me to Reiki and Kinesiology. If you haven't heard of them before, google them now. I was open to pretty much anything and anyone at this stage, and it was the best thing i could have ever done.
If i've lost you by now, then that's fair enough. But please, for those of you in the same desperate position as i was 6 months ago, please leave your e-mail addresses below and i will contact you personally, because ever since my visit to see the Kinesiologist, i have been clear of the pressure, headaches, fatigue and dizziness. Such a life-changing decision, and one that i will always be grateful to the people who guided me down that path.
I have spent the last 6 months trying to help as many people as i can, because i know just how despairing the situation can be. I thought i would have to get used to my new level of 'normal', and that i could never be helped. But trust me when i say there's light at the end of the tunnel, and it may not be the conventional western way, but there's definitely a solution.