Am I crazy? My balance issue got way worse again Monday night with not much relief since. Rolling over in bed is torture - I feel I am falling. Getting up I stagger and near fall - have to be so on guard. Brushing teeth and washing hair - again torture. So hard to stay on my feet. Even in a seated position with any pressure on my neck I feel as though I am falling.
My internist upped the Valium from 3 mg a day to 12-15 just to get me through until my appt at WI Chiari Center on the 3rd. Hate taking any meds at all but it’s just too scary and uncomfortable without them. So currently taking phenergen, Valium, mididrine to raise BP due to what the internist us assuming is OH. And he also now ordered another 5 day round of Decadron steroid to counter any possible inflammation.
I would love to hear if others have these same symptoms and if so how you are coping?
Trying to use any kind of device or aid or walker or cane I don’t think would help. Yesterday I was standing at the kitchen island and made the mistake of simply looking down at my med chart and the symptoms came on so violently all I could do was hang on until David got there to catch me. A walker would have gone right over. I couldn’t move or let go to even get to a chair.
Do I sound like I am whining? Lol - I hope not. Trying to push through with as much grace as possible which is a little hard to do when staggering one of my daughters favorites sayings us ‘fumbling toward grace’ - I guess that is what I am doing
Thanks in advance for any feedback. Now that I’ve made a short story really long I better go cuz my head is a spinning!
Kone, so sorry things seem to be getting worse. I agree about the dysautonomia -should get it checked out. I also wonder if a neck collar/brace might help with the sudden worsening dizziness? If it tends to get worse with moving your neck it may payoff to try the collar. Nobody wants a walker, I get it, but if could save you from hitting the ground, even once, it would be worth it.
Hang in there.
I have had balance issues every since I could remember! I run into things sometimes. I have fallen even for no reason at all. My doctor got me a 4 wheel rollator (walker) with a seat and that does help. I did not want to use a walker either and I was embarrassed but I got over it because I needed to be safe and I did not want to hurt myself from falling. And when I need to sit down, I can with no problem. Otherwise I am a whining horrible grumpy mess. Its the pain talking when I am like that. I knew the standard walkers would be no good for me. You could still fall with those things. So like Abby suggested, I would get the 4 wheel kind. I am sorry your having these issues. But this is an amazing support group. I am new to Chiari, just found out I had it. But these folks have been awesome. :)
Abby - thank you for the kind words! I will look up dysautonomia - I have been seeing it here on the site. I am supposed to be getting scheduled for autonomic studies at froedtert in mke wi but figured I would wait and see what Dr Heffez recommends. I have always been very active and it is challenging to admit limitations. But this is my journey at the moment … Grace!
Thanks for the support Jenn - I have been wondering if he might recommend trying a cervical collar before surgery. I go on Wed next week and will have more answers then. If anyone has a read on my situation (and realizing this wouldn’t be medical advice but just based on your own symptoms and history etc) I would sure be interested to hear whether it sounds surgical or not to those of you who have been dealing with this.
You are right as well - safety over pride! Don’t need to crack this head open besides lol
Jennabug - sorry to hear you are also struggling with this new diagnosis. It sure is a lot to take in but we are very lucky to have found each other the support network!
This is my biggest issue too!! I get so embarrassed at work bc i can see the other nurses whispering & debating if im on drugs or somethi g. I just got diagnosed last week & this is the issue i intend to address 1st!! If u find anything that helps please let me know!! I wish u the best!
I had balance problems that started AFTER my surgery. Poor balance with my eyes closed, losing balance when I moved my head, nauseous when turning over in bed, and funny eye stuff - I was not so impressed! I went to see a vestibular? therapist who said that my problems were not related to my inner ear but more how my brain was sensing where my head and neck were is space and that the surgery had messed that up. Just saying what I was told! Did some neck and these eye exercises that did not seem to help. Then, nine months after my surgery I was given these exercises that were strange but really worked. Two days later my eyes-closed balance was good to go and other stuff resolved with-in the week. This was in January. In the summer, the same types of symptoms can back so I did these exercises again,this time for a month to hopefully keep them away for good. Time will tell but at least my balance and stuff is good.
Update on my appt and possible insight into 'violent' blance issues.
I had my appt with Dr. Heffez at the WI Chiari Ctr yesterday. I do have a chiari and some minimal brain stem compression (can any be a good thing???!). I also have cervical stenosis and myelopathy. Dr. Heffez said in his experience Chiari patients don't typically have the type of violent balance issues I have related to head/neck movement (the balance issue would be more static all the time or just worse when standing up). He is thinking this particular symptom may be more related to the myelopathy so has me in a Vista Collar 24/7 for 2 weeks to see if this helps or not.
Curious to see what others think and if this jives with what you all know and are experiencing?
He said I have a complicated situation going on: could be the chiari, could be the stenosis, could be something else related and/or unrelated. Hmmmm. I may need SSEP testing and Autonomic testing yet. He said there is possibly several different things going on.
I do feel good about having a diagnosis that makes sense with the symptoms (myelopathy) and it seems to be a good starting point. Feels like a long, long road ahead though ...
Hope you're all doing well today. Thanks again for all the feedback and mutual support =)
Sarah - don't let them get to you! You have no reason to feel embarrassed. Nurses of all people should be able to see when someone doesn't feel well?!!
Gabbby - glad to hear things are going better for you with the balance! Whew, huh?! Do you have cervical myelopathy as well?
Not nice...hate the balance stuff...my easy fix is the meds they give for travel issues...the non-drowsy stuff in the morning...it's cheaper than alavert (presciption)...it's in the travel aisle at Wal-Mart. Buy wider shoes with grippy bottoms...i.e. cross-trainers or what have you...I've gotten very lucky on Ebay...Merrell's make alot of great walking shoes with this purpose in mind.
Also, I kind of walk like a penguin....truth, I wish someone would take a picture...every time I feel like I'm gonna tip over...I throw my hands out by my sides...with the arms straight down along my legs...and "balance" myself again...keeping my legs slightly rigid & the knees slightly bend...Lord only knows how many times I provide a chuckle or two to my fellow citizens. It has to look a little strange.
Thanks Jenn! I have not had that test - I don’t think it applies to my situation. I don’t get dislocations and don’t bend crazy ways. I think I understand what you mean?
Stacy - I hear ya! And all of those suggestions are good and make sense … Except for my gravity defying earth moving violent eps. For example when I saw dr heffez he said ok stand here and bend at the waist and let your arms hang down … I’m thinking oookaaaay - of course within 2 seconds I was falling. When that feeling comes whether I am standing or bending or sitting or laying - the only thing I can do is ride the wave. I have zero control over my own gravity/body in space. Def better if I’m sitting or laying than standing lol
I love your sense of humor about it! Better to laugh than cry sometimes huh?! :-))
one of my daughters favorites sayings us ‘fumbling toward grace’ - I guess that is what I am doing