Hi All
Am feeling somewhat shakey this morning. I woke up at 5 to use the bathroom and I jumped out of bed pretty quick (normal for me) and tilted to the right and walked into a wall!
I managed to straighten myself out and make it to the bathroom and walked back okay but feeling very shakey and off balance.
I lay there for an hour unable to sleep with the horrible thoughts of this coming back going through my head. My heartrate was up so I lay on my back and did some breathing exercises and managed to relax. When my husbands alarm went off at 6 I got up and tried walking again. I was fine, again just shakey and then stood on one leg with eyes closed to see if I was out of balance, but it seemed okay. My calves are super sore and tight from a skipping workout so I am wondering if that contributed to walking funny when I first got up.

My husband said I got up way too fast and he said he often goes off balance when he first gets up, everyone does...I am just so sensitive to my head and position that I tend to blow stuff like this out of porportion. I think anyone who has suffered a vestibular injury is ultra sensitive to their proprioception, vision etc, just the nature of this beast.

When I tip my head up I have no blips in vision or feel like the BPPV has come back. I will do an MEP later to confirm that.

Although I have had some really good times recently, I hate that I often feel on the edge; like this may come back. I try to get on with it, and haven't stopped doing anything, but any time I feel off or have a decomp event it is amazing how I go back to the anxious "what ifs" until I can talk myself out of them.

Am feeling a little better now, will get the kids off to school and go to the gym and hopefully this was a onetime event that is now behind me...scary though!
Thanks for listening!
FC

Me again
just did an MEP and although I didn't spin at all, when I went into the first position my brain was working pretty hard not to. This is how I felt when I first recovered from BPPV and was still doing the MEP as a precaution.
Not sure what is going on.
FC

Me again
just did an MEP and although I didn't spin at all, when I went into the first position my brain was working pretty hard not to. This is how I felt when I first recovered from BPPV and was still doing the MEP as a precaution.
Not sure what is going on.
FC

Hi Firechick

Getting out of bed like u did....will sure do it(at least for me---takes a while for that to go).....if there were a rock back in the ear canal...u brain...would not stop...u from spining...since...its an actual..piece of "material" that is causing the inbalance......

Have u had a chance to watch the video on "compensation" at the web site that...Scott...put...up...that pretty well covers...what....happened...I think...

:cool:

Hi Subs
just did that now. I had watched the BPPV one earlier but didn't get to the compensation clip. He explains it all pretty clearly, and gives hope!
I just dropped my daughter off at school and was thinking on the way home that I can't enjoy today if I am worried about what might happen tomorrow.
These decomp events are getting shorter, and farther between.
Sometimes we just need to look at our calanders and reflect where we were this time last year or even 6 months ago to realize that this truly is the way to recovery.
My daughter laughed when I told her I walked into a wall this morning and said, 'Mom, I do that every night I get up for a pee!' Maybe it's not that bad after all and I am turning a molehill into a mountain.
Like the Dr said, those who are motivated and active will recover faster, I think there is a lot of truth in those words.
Thanks for your gentle reminder.
FC

Hi Firechick,

I have to admit, I've done that before (walked into a wall in the middle of the night) and before the ear problems. Also, I never had imbalance or spinning vertigo so that there will tell you that walking into a wall could happen to anyone. My thought is that you were still half a sleep and feeling disoriented from still being sleepy. Relax as Subs pointed out that you'd be spinning if it were the crystals loose.

Hope you feel better and yes, we all spin out of control (no pun intended) when something minor happens (like me with this cold and my post earlier in the week). I still have this cold and I still feel crappy, but not really too dizzy or bad vestibular headaches. Ears are just full but maybe they've felt like this before when I've had a cold. I never thought about it before but makes me crazy with the full feeling now as if it was coming back again strong. We are all so protective of our vestibular system now that it will drive us insane thinking about the what ifs especially that they most likely won't happen.

Enjoy your day.....you'll be fine! - Gloria

Hi Firechick,
I know I don't have much experience of this compared to you guys (4 months) but I just wanted to say how sorry I am that you are worrying about this. I fell over walking to work last week and cried all day thinking my vertigo was to blame but really I think my feet just tangled up like happens to everyone. Doesn't stop me worrying though. Like everyone else says I bet you were just tired - if you hadn't had the ear problems previously you might not have thought twice about it.....
Anyway, hope you have a great day and manage to put this out your mind

Hilley

Thanks Gloria
I was just thinking about you, I was doing some research (as I tend to do when I hit the panic button dealing with this crap)..and I found information on an herb that is supposed to be effective with tinnitis.
I don't know how you feel about herbal supplimentation, some people don't like to mess with them as there is not a lot of concise, standardized research done on them. Also, they sometimes can't be used when taking other meds, check with your doctor before considering anything like this. But if you are interested, look up 'tinnits and vinpocetine' on a web browser and see what it says. I know I have seen this stuff in Canada, so I am sure you could find it in the states. It is a memory enhancer that increases blood flow to the brain, it is derived from the perriwinkle plant, (I have some growing in my garden). Also I saw mention of zinc supplimentation helping with the tinnitis too, and taking zinc can help in other areas with little or no risks.
I am beginning to feel a little better now, that bump really threw me for a loop. I think it was my daughter who made me see the humour of walking into a wall that really helped! Also having Subs confirm what we already know but somehow need to hear again and again...
Have a great day,
FC

Hi Firechick,

I know what you mean by reassurance. I post sometimes knowing the answer but wanting someone to just tell it to me. Someone that understands and has been through this.

I have tried some herbs and honestly believe they have helped me build my immune systems up to the point that I haven't nearly caught as many viruses so far this winter (hope I didn't speak too soon) and have tried a few things on my ears including the gingko that you previously mentioned but no help with that. I'm going to look into that vinpocetine more. I did read about the zinc and have been using it as a daily supplement. I think that is one of the things that has helped my immune system.

I'm really hoping as my dizziness and vision have gotten remarkedly better this past December that little by little the pressure, headaches and funky ears will eventually go too. Don't know if you read the post, but Subs said he had funky ear feeling about 8 months past that 12/13/14 month recovery mark so I hope that is just what I am going through now and I'm praying the tinnitus just stops when the funky ear stuff stops. I got discouraged because it has been a year with the tinnitus, but Lizzy33 posted that she had hers into 14/15 months so that gives me hope and coincides with Subs' funky ear feeling going away (2 years does seem to be the norm for the recovery stories I've heard about).

This stuff is just so rough on a person and you continuously worry about going backwords or having something knock you out of wack. Even though I've managed to calm myself down from this cold since it only really seems to be making my ears feel full, I panicked a little last night because I sneezed and then got crackling in my ears like it was for so many months in the beginning, but I woke up today and the crackling is gone.

Take care and thanks for the information. Always enjoy your day when you are feeling great and never think about the tomorrow because you really never know what it holds. - Gloria

FC

I have vestibular damage and not BPPV and have what you describe almost every night! Whenever I get up in the night, my dizziness is much worse - used to it now to be honest. Its partly cos the brain has been asleep so forgets the compensation temporarily and its also due to the dark...

I can also wake up just in bed and be spinning/shifting - yuck.

Dont worry xxx

Hi Firechick,
Sorry you had a night that threw you a little - hope it's going okay now. Isn't it amazing how our children so often help us put things in perspective ... mine accepted the "different" me long before I did!!!

It is very difficult though to not at least wonder if it's another blip - I know that feeling of being on the edge. I told my therapist I felt like I was becoming completely self-absorbed thinking about what would happen next - and I didn't like it. Her response was to just to try to normalize as much as I can and if something does come along - we'll deal with it. Good advice I guess, but sometimes easier said than done.

Interestingly, I just got back from Winnipeg from my appointment with the ENT specialist I had been waiting for - I'm still kind of foggy - long day - but she's now looking at me possibly having MAV - which I had never even considered before - and she said the BPPV symptoms could be associated with that. Looks like I have more research to do - but it feels good to have something else to go on because, as you (and I) have said, it felt like there was something missing in my dx. I do really like this Oto-Neuro, she's honest, and she admits my case is a bit of a puzzle, but she's determined to keep looking - very thorough - lots of humour - just all-round good vibes.

So here goes - I'll start right here with my research - sending my good vibes to you ... and hey, face plants in the snow are much softer than face plants on the wall :-)...

~Sheri

Hi Sheri and all for your kind responses
I am feeling much more grounded today, actually worked last night which was probably best, once I get caught up in a good extrication call I tend to forget about myself. I did lots of balance work yesterday and it was all good, just feeling shaky from the wall bit. (had to laugh Sheri about hte face plant comment, only it has been raining and the hill is bullet proof right now! Luckily calling for 10-15cm tomorrow!)
Glad you got to see the neuro-oto., good news. With Mav there is lots of research to go through. Lots of info here too about the MAV thing including the diet and various meds for prevention. Check out Adam's info, he has lots to offer on MAV.
I remember when I went to see my Doctor the first morning I had labs. My eyes were literally rolling around in my head. He took one look at me (while I puked in his office) and said "I know these are the last words you want to hear from your doctor, but Very Interesting, I 've never seen a case this bad, you get a gold star for this one!" That kind of feaked me out.
Hope you can begin to get some answers and relief from this.
Pray for snow
FC

Hi FC,

Glad you are feeling more normal again. For what it's worth, I have awakened in the night many times like this too feeling very wobbly while trying to negotiaite the toilet - even in the 97% periods. So normal stuff I think.

Cheers....Scott

Hey Firechick,
Thanks for the pointers in the right direction for the MAV research. Glad to know you're feeling better and didn't suffer any major damage. I contemplated telling you in my last post about a similar experience I had last year, but decided not to "bare all", but now I'm thinking, "what the hell - anything for a laugh!" During one of my stays in the hospital last year, I got up in the middle of the night for a "biffy run" and became very disoriented on my way to and while I was in the bathroom - to the point where I fell forward from a sitting position in the biffy and hit my head on the toilet paper holder on the wall - had a lovely purple bruise to show for it - and a story that seemed to cheer everyone up to boot!
Hope you got the snow you were hoping for - my boys just competed in a ski event yesterday (x-country), and one's off to the Manitoba Winter Games while the older is off to Nationals in Thunder Bay in March. They're leaving their old Mom in the dust right now, but I'm happy for them and more determined than ever to join in the family skis again soon.
I was sharing your story with my husband and he has had to do some "firefighter" training for his job with Parks Canada, so he knows a little about what it entails. He commented on how much strength and fitness it takes to do a job like that, and knowing where you were (walking with the help of a cane like me for a period, right?) and how far you've come from there also gives me hope that grit and determination can make such a difference. Thank god for people like you, Subs, Scott, Gloria and many others who are not afraid to express your fears when things aren't going well, and are there with advice, understanding, and good, sound experience to draw from to help others.
I'm a little leary, I guess, to put all my hope into this latest dx, but it's good to feel that I have a "starting point" again. I have been doing a little research (still can't read for long periods), but I was reading about some of the diet changes that have helped some people with MAV - and I was so disappointed to see that chocolate was a major trigger for some. I so hope that's not true for me - I consider chocolate to be a food group on its own!
Anyway, hope everyone's okay, I haven't been very good at checking in on people lately, but you're in my thoughts - positive vibes to all...
~Sheri

Hi Sheri
Thanks for the shout out, and comode story (everyone loves potty humour). One of my friends once told me, when I questioned how she managed to do so much: "If I ever stop, I don't think I would be able to start again, so I just keep going". I have taken that on as a mantra...keep moving. I think that has allowed me to work through a lot of this. Once I recognized that my symptoms were decomp, not another injury or infection, I could move through the symptoms. Some days I did just camp out on the couch, but there is no question that recovery was slower if I got too caught up in that. I also found that if I wasn't feeling great, esp at work, and something would happen that would require all of my faculties, I could do what was required (somehow). AFter I would feel like collapsing and felt even worse, but it was a relief to know I can pull through when it hits the fan. Probably how you were when your son had to go into hospital from all of his training, you put your own feelings on the backburner because of you intense love for him and need to help him.

I really hope this mav thing pans out for you. Apart from the meds, treating the mav, or migrains in general, means a healthier lifestyle which can only help.
I hear you on the chocolate front. I have two coffees a day and am a self-proclaimed cofffee snob. I only drink my own lattes, made with organic beans we grind ourselves, on a stove top esspresso machine with a little pot that makes the best milk froth EVER! I do drink de-caf sometimes when I have had enough caffeine but want the taste. I know if it was the difference between feeling like you have been and not drinking coffee it would be a no brainer. I often wonder if my own recovery would be faster without it, but working shifts and being up all night, sometimes the coffee is what keeps me sane. I remember hearing a story on the news about how deoderant/anti persperant may be linked to cancer, and then people phoning in saying even if it is, they couldn't live without deoderant. I couldn't believe people would take that risk. (I have since moved on to the crystal stuff with no aluminum in it). I guess we all have limits and will do whatever is necessary to survive the life we are willing to live.
Congrats to your boys. X-country is such a hard sport, they must be mega fit. I am heading out this aft for a classic ski in the gats, just had 20cm of freshie snow. How about our Olympic hopefulls with Becky Scott leading the way, can't wait for Feb to watch TV 10 hours a day and not feel guilty. (I will live vicariously through the athletes). Hope you get back on your skis soon.
FC

Hi FC,
Thanks so much for your wonderful reply - you're absolutely right about just keeping on moving because once you stop it's more difficult to get started again - we need a reboot button! Hope you enjoyed your ski and, yes, like you I am very much looking forward to living vicariously through people like Becky Scott during the Olympics - our whole family will be glued to the tube! And thanks for the kind words about my boys - yeah, they do lots of training and love every minute of it - it's a great sport - and one that is a lifelong sport - and with our winters we need to find a "winter passion"!
I have been slowly building up my MAV portfolio - off to my GP tomorrow for consult report and med changes - I'm anxious to get started, but know I must be patient. The last thing I'm going to do before I walk into his office tomorrow if eat my favourite chocolate bar in the parking lot - just in case...
You take care - please keep in touch - I do enjoy your posts very much ...
~Sheri

Hi Sheri
Just wondering how the apt went regarding the new possible diagnosis. Have you found a neurotologist in your city? Not even sure if such a beast exists here. Will be interesting to see how our health care changes with the new gov.
Two nights ago I woke up thinking I was spinning, it was almost a visual thing with stuff flashing across my sight from left to right...then Iwoke up and wondered if it was a dream. I sat up and felt okay, I was'nt anxious which was good and I tipped my head around in the usual test pattern and everything looked good. I did the MEP when I woke up which was fine...I did wake up on my right side which I never sleep on, odd. I just go up today and had a similar experience last night when my head had rolled off to the right but I was on my back with my head tipped way off to the right..don't know why I am ending up in these positions..still okay today but wondering what's going on...
Have been out skiing this week and thought of you. Have you tried going out on your skiis for a "walk"...maybe that will be good therapy for you and should be pretty safe. YOur feet are "sliding" and you will usually have two on the ground at the same time, and your poles are like two walking sticks. Just a thought, it was so beautiful to be out in the fresh air I thought you would love it.
Off to work now, hate this early morning on weekends when I leave everyone snoozing happily in bed.
Later
FC

Hey FC,
Sorry to hear you've been having some "off" nights and waking in positions that could have caused the discomfort. I remember around Xmas time when I posted about my "foggy driving" episode and was having trouble with waking in a spin at night, one person who responded (can't remember who and too lazy to look right now :yawn:) that she/he would put an extra pillow behind his/her back and head to ensure that a rollover to the "bad side" didn't happen - might be worth a try. It's good that you don't feel anxious when you wake up - that's half the battle - at least for me - I seem to be in the middle of an anxious state by the time I become fully awake - my body/mind just goes there on its own - Subs did explain that one to me in the same post I mentioned before - said the mind automatically goes to the place where it has been "trained" to go over an extended period of time. What kind of "visual stuff" do you mean? Once again, I remember reading "somewhere" recently in my MAV research that people who experience migraines often see particles floating across their vision - like white crystals I think they said. Is this anything like you're feeling?
As for my appointment with the oto-neurologist, I'm hopeful that she's on the right track with this MAV dx. She works out of Winnipeg, a four-hour drive from where we live, but worth it if she's right. As well as being an oto-neuro, she's also a laryngologist (sp?), and a member of VEDA - does lots of research and papers that are published in medical journals, so she comes highly recommended in the medical field. One of my other docs said she is a "puzzle solver" and loves a challenge - lucky for me! Unfortunately, she was unable to get her consult report to my GP for last Friday's appointment, so we'll try again this coming Friday. She is sending me a copy of her consult report as well, so I'll fill you in more specifics that my "foggy" brain does not remember from the appointment.
Do you experience much brain fog and/or processing/concentration/memory difficulties in general? I have always been very active in our community, esp. with sports that my boys are involved in and their associated fund-raising events, etc. When my husband and I first moved here about 10 years ago, we started a soccer program that has outgrown the capabilities of having only two people running it and it has evolved into a wonderful opportunity for young people to have the chance to get involved with this sport. To make the connection between this and brain fog, I remember how much 'mental' processing it took to organize all of the game schedules, fundraisers for supplies, uniforms, etc., and coach a group of my own as well. I was able to do it all without even thinking too much, it seemed at the time. However, this weekend we had organized a Dinner Theatre as a fundraiser, and I was a major player in the organization, etc., which I found to be extremely tiring, but I really wanted to do it. Last night I was helping to collect/sell tickets at the door and I suddenly realized that I was having a great deal of difficulty giving back the correct change and I became very "overwhelmed" - I could hear what people were saying to me, buy felt unable to 'process' it and respond intelligently. My husband noticed my difficulty and very sweetly stepped in to help, but I was very upset - I felt like an alien. I just had to go and sit in a quiet place for awhile, but I felt very shaky for the rest of the evening. I did not experience any vertigo - only my usual disequilibrium - which I can cope with most days - but the problems with cognitive ability or "disability" in this case were difficult to deal with. I guess the old grey matter is on overload trying to work with not enough sleep and trying to figure out where the body is with all of the mixed messages my 'faulty' vestibular system is throwing at it. So, I'm really hoping that I can start the treatment that this latest oto-neuro has suggested (all I remember for sure is that she said she has had success with nortryptiline (sp?) in the past) as well as trying to figure out triggers.
Wishing for you more restful nights with your head staying where it is supposed to be and the only "stuff" flashing across your vision is the snow falling while you ski on your favourite trails! Hope you feel better soon... take care ...
~Sheri