MdDS Update and New Projects

I know, I know... it's been too long! Well let me catch you up. In early December I had another recurrence. Most of my days were 3-4, sometimes 5-6. Needless to say, anytime in front of the computer doesn't help much. I did my usual stint of upping my vitamin D, and found something new. I'm sure many of you out there in cyber world have heard of the Whole30 diet? Well in case you haven't I recommend checking out YouTube.  In a nutshell, its super, severely strict Paleo. I followed it to the letter for a full 60 days, not just 30. I was late in the game, but attribute it to one of the things that helped put me back in remission. Yes, just one of the things. The other is all the walking I started doing when I got my new puppy in February. 

Isn't she just the cutest?!!!

Towards the end of April, was the last day I remember having any symptoms. I remember the exact last moment I felt any real symptoms. I was at a Business Boutique Conference and they had some flashing lights on stage that made me a bit fuzzy, but I looked away and covered my eyes for a moment and then felt fine. Don't get me wrong, my symptoms had started diminishing over the past few weeks, where I'd go a few hours without really noticing any movement, but then at night it always seemed to be somewhat present. Then after that day really nothing other than the occasional light-headedness that I usually get from sinus issues.  Honestly, after that conference I was feeling so inspired and positive, it was hard to not feel great!

Christy Wright and Dave Ramsey on stage at Business Boutique Conference 

As for the "new" projects, I'm still attempting to keep up with my painting group. This year I've only managed to complete one project thanks to my symptoms.  This beautiful zentangled piece designed by Golda Rader. "1958 Prom Dress".

Sewing projects... I've gotten only a few done, and not the ones I should be working on...

 



A princess dress for my niece Lulu...

 and one for niece P.J.











They turned out pretty cute and the girls loved them... just in time for Easter.  BUT I still have a wedding dress that needs a makeover. I've been procrastinating thanks in part to my mind going a million miles a minute thinking about all the other things I want to do..... ah... there's the A.D.D!!! hahaha!
But wait... SQUIRREL!!! Here's another new hobby I've been working on since last year...

There's more, but if you want to see them, you'll have to wait till I get them into my Etsy shop! Hopefully that will be soon. I'll keep you  all posted!  <3 umbrellagirl!

Remission

MdDS is a curious thing. A full blown episode can completely debilitate you. Don't get me wrong, there are good days and bad. Hours that are okay and some that just are not. This past episode again lasted about 5 months. I'm happy to report I'm in remission again, but its not what you think. Let me explain....Just because I'm in remission doesn't mean that I feel "normal". There are still days I feel unbalanced. It isn't rocking or swaying, but little moments that I feel a kind of heaviness in my head, a moment of unbalance, or forgetfulness. These seem more apparent when confronted with stress and sometimes even the weather can affect it. Overall though there is no rocking, swaying, or bobbing. This is a good thing.

Now the question.... How? How did I go back into remission again? Well to be honest I think it maybe a combination of things. First, I quit my job. Yes, this was the biggest stress in my life. I know not everyone can just do this. Fortunately I have a wonderful husband who has made it work. Now I haven't completely given up working, but I'm concentrating on my hobbies and creating "some" income. "Some" is in quotes because it is very irregular and not anywhere near what I was bringing in to our family. Someday I hope it will blossom into much more.

Second, I started taking more supplements and eating more whole foods, less grains and sugars. Specifically, I take 6000-8000 iUs of vitamin D3 per day, 200-600mg of chelated Magnesium glycinate, a vitamin B complex sublingual, and a multivitamin. Also, I started juicing a few times per week. Ah, the benefits of Kale and Spinach! Now I know what you are thinking.... that's a lot of Magnesium!!! Yes, it can be, hence the range. Back off when the need arises. Also, taking it at night seems to help with sleep and cramping muscles.

Third, Chiropractic Care. Twice a month, now once a month, I see my chiropractor Dr. B. This man has helped me more than any other healthcare professional! He's offered ideas and suggestions to help me cope and reset my body. As long as I listen and follow it has seemed to help. The adjustments aren't too bad either.... haha! Seriously, Dr. B is kind, concerned, and really cares about his patients.

Lastly, but most importantly, Exercise! Walking, even if its for a few minutes a day outside. Stretch! Everyday, as soon as you get up, or take a class that focuses specifically on stretching. I'm not afraid to admit  I did this and it was mainly with a Seniors group, but hey, whatever helps!!! Gardening is great exercise. Specifically I exercise Organic Gardening.  I could spend 15 minutes to several hours several times a week doing this. I think this helps with balance and vision. Looking at things near and far. Plus, getting your hands dirty is actually healthy!!! The best part is I get to eat what I grow, and I know what's going into my body! Check out some of the pictures of my square foot gardens under the "Gardening Adventures" tab!!! Seriously though, anything that gets you moving and using your eyes and brain together helps. There are some studies that say MdDS is related to the  Vestibulo-Ocular reflex (VOR).  Readaptation of the Vestibulo-Ocular Reflex Relieves the Mal De Debarquement Syndrome
and
Dizziness and Balance  and New Treatment Successful for Rare and Disabling Movement Disorder, the Mal de Debarquement Syndrome (MdDS)

MdDS, I pray you stay away for good this time! For other sufferers out there, I pray you will have relief, and we will all have a permanent cure/treatment soon! 

MdDS rears its ugly head...

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

So I've been following the Primal Blueprint diet for a month now. All things considered I feel pretty good. I've lost a few pounds, and I'm hoping my former self will re-appear soon.  I feel the MdDS is lessened somewhat. This past Sunday I hardly noticed it at all. Monday back at work however was a different story... Too much time in front of a computer. At least my concentration isn't as bad as it was when this all started. I still have bouts of feeling like I have ADD...haha.
I've been working on some of the exercises the Physical Therapist gave me. I can balance on one leg with my eyes closed for longer than 4 seconds now, but I'm still pretty wobbly. Using just one of my fingers on the counter makes a huge difference. The pulling sensation I was always feeling is just about gone. I often still feel like I'm sliding off the bed when I go to bed at night though. I also haven't done the acupuncture in almost a month. I'm debating if I should give that another go around. I felt it was helping somewhat at the beginning, then it seemed that very little was changing for a while. Sunday really was my big break through... I really barely noticed any symptoms at all. It was a close to normal as I've felt in months!
I'm planning to continue the Primal diet, and thinking of having my hormones checked. I've been doing some research on it, and a saliva test seems to be the way to go because that checks for active progesterone, rather than overall progesterone. We'll see. Nobody knows if that even has anything to do with MdDS for sure, but the fact that its mostly women who get this, it seems the most plausible. At any rate, I figure if I get my body balanced out, maybe my brain will balance out, and the MdDS will self correct. Still researching.........

So here's my MdDS story...
I went on a cruise.... something I've done before with no issues. Only this time, I flew to get to the port and flew home. As I said, I've done the cruise thing before... only usually I drive to the port. We were set to go to Jamaica and Cayman Islands, but then Hurricane Sandy diverted us to Costa Maya and Cozumel. I was disappointed at first... I didn't really want to go to Mexico, but I actually really enjoyed Costa Maya. I had no issues in either of these ports, walking or feeling "weird"... It was the last day on the ship when we actually were feeling the effects of Sandy on the way back to Miami. Still, I'd been in rough waters before with really only a few days feeling that still on the ship way once off. Day 5 was positively the worst. I felt like I'd gotten an inner ear infection or something. Finally after about 2 1/2 weeks past, my bff told me that she'd had something similar, and I needed to go see a doctor. So I went to the local "doc in the box". (That's what we call them here) and she prescribed meclizine and Nazonex.... it is allergy season after all. And she said if I wasn't feeling better in a week to go see my Primary Care Doctor.
One week later.... yep, I went to see him. The meclizine did nothing. My PCP prescribed Diazepam. Said to call him back in a week and let him know if it helped. I thought it did at first. I was able to concentrate better at work, and actually feel a little productive, but it still wasn't gone. When I told my PCP this, he upped the dosage on the Diazepam. It didn't really seem to make that much of a difference. The next week I called him, and he told me that he thought I should see an ENT... Diazepam apparently is pretty addictive stuff.
Around this time I also started seeing a chiropractor/ acupuncturist, Dr. B. We disgust many topics concerning my health including exercise and diet. He suggested that eating Primal may help my body reset. So, as of January 1 I've been eating according to the Primal Blueprint (some call it Paleo). Dr. B told me my first acupuncture session would leave me feeling a bit like I had the flu as my body ridded itself of toxins. Actually my first acupuncture session left me with a major migraine. The kind that I could usually get rid of with just a dark room and sleep.... it lasted through the night, and woke up to it as well. I had to break down and take some ibuprofen and sleep more. I felt really sick.
The next week I went to see the ENT, and he told me he was going to send me for a bunch of hearing and inner ear testing, but that I needed to stop taking the Diazepam and allergy meds for 48 hours before the testing. No problem... I stopped actually 4 days before, and really didn't notice a decrease in my concentration. That was good. Right?
The inner ear testing revealed nothing except one little blip that I didn't hear... very low. Everything else appeared normal. So the ENT suggested that it was Hydrops.... I thought Hydrops? I've never heard of that, so I looked it up... Ménière’s disease???? I don't think so... I knew what that was. My Grandpa lived with it for many years. I knew that wasn't it.  I found the vestibular.org page and began reading. I found the Secondary Endolymphatic Hydrops(SEH) page, and thought... oh..... maybe that's what he meant (this is also referred to as Hydrops)... the symptoms seemed closer to that. Then I read about Mal De Debarquement.... that sounded even closer to what I was experiencing. Constant Consistent Unbalanced, pulling, rocking sensation. The ENT wanted me to get an MRI.... so I got that too. It revealed only a small 3mm non-conclusive shadow on the right side of my brain.... yeah that only means it could be an old head injury, or old migraines, or I moved slightly during the MRI. Funny that all the pulling and pushing comes from the right side of my body. Okay What's next?
Now I meet with the Physical Vestibular Therapy Doctor. She does all sorts of Balance testing on me, and confirms I have MdDS. She gave me some information about it, and some exercises to do daily. A few I feel I have mastered in the respect of they don't make my symptoms worse. Others, I last only about 4 seconds doing. She says training my brain to read my joint signals properly is the goal. We also discussed diet and triggers that make the unbalance worse. She also said the Primal Blueprint was the way to go. I met with her again today and she added a few more visual exercises for me to do daily. I will meet with her every other week for the next 2 months.
I've seen very little improvement in the past few weeks, but it is worlds different from Days 5-14. I have some okay days where the symptoms are less noticeable. I find when my stress is low and I don't sit in front a computer (as required by my job) for hours on end its more manageable. Being outdoors helps a great deal too. Busy shopping malls, grocery stores and florescent lighting make it much worse. Riding in a car seems to be my greatest relief, and I feel normal... almost. Long trips aggravate my symptoms more once I get out of the car. Short trips to the Farmers Market and around town are the best. Walking outdoors in the sun is pretty relaxing and symptoms are less noticeable. It's always there though to some varying degree.... that pulling/pushing and sometimes pulsating feeling on my right side. I keep hoping I'll just wake up one day and it won't be there. I find mornings are better... it is more noticeable as the day goes on. My body gets tired from all my muscles overcompensating I guess.
I'm continuing on with the chiropractic and acupuncture treatments. It does seem to offer some relief for a few hours or days now. I was going every week, and now down to every other week. Maybe its just helping me relax more... Not sure. I just know I'm ready for another treatment.... every week would be better, but insurance is a whole other topic.
Today, I told my PT Doctor, that I don't know how much longer I can put up with this... I was giving it a deadline.... 3 more months. She said give it at least 6... she could see some small progress, it is just going to take time. TIME???? I do not want to be one of those people that have this the rest of their life. I know the average is 9 months to a year for most people, but really???? I've always been a quick healer, I've made up my mind. 3 months!!!!
I'll keep you updated. In the meantime, I'd love to hear from anyone that has similar issues. We could compare notes. I'd like to know what has or hasn't been working for you. See ya in Cyberspace!

Its been about 3 months that I've been feeling this "dizzy" unbalanced feeling. And let me tell you... it sux!!! I decided to start this blog somewhat out of the frustration and desperation I feel to just feel normal again. I've been able to find very little on Mal de Debarquement Syndrome. (MdDS). And what I have found gives me even more frustration. Very little is known about it... what causes it exactly, how long it will last, what will help symptoms, and definitely that there is no cure. For some this nightmare ends as it just gradually disappears over time, and others live with it for years, and are still living with it. From everything I've read it appears that the longer it goes on, the less likely it will self rectify. And re-occurrence??? Yep, that's high.

Anyways, I figure maybe "talking" about it might help me connect with others out there, and maybe together we can give each other some hope that this will not go on for the rest of our lives...