No neuro news, hanging in there
I still haven’t heard anything from the neurologist regarding the blood work and brain-stem test.
It’s getting to be a bit frustrating when I think about it, but so far the best thing I’ve done to handle this is just keep on going and not think about it.
I have still felt dizzy and bumbly at times, especially over the last three days. I suspect that part of the problem is my allergies and the weird weather we are having — highs in the 80s in late October? Yuck. I just checked the weather and it looks like it’s going to stay above normal for the foreseeable future — ugh. I do wish it would get cold.
The nerve pain comes and goes but for the last week it’s been quite manageable. Been having some sharp, stabbing pains in my head today.
On the bright side, I haven’t missed any work in several weeks and it seems like it is getting easier to just push on. I do tend to be pretty exhausted by the end of the day. Even so, I’ve been able to do things that a month ago I didn’t think I would ever be able to do again.
For example, we took the kids "power trick or treating" last night — we hit tons of houses and they got quite a haul! In addition, we also went by my sister’s house so they could see their costumes, my mother-in-law’s, my parents’ place and also went to visit our very best friends, although it was a brief visit. It was an extremely busy night but it was quite fun. When we got back home, we had a great time playing with the kids as we sorted through the booty.
We’ve also been working on finishing putting up a fence down at my mother-in-law’s place. It is looking great, but has been a lot of hard work setting fence posts and hanging panels. I’ll post some pictures of it when we get finished.
Have also been working at my dad’s house on his plumbing recently. We’re going to try to move some cabinets into his garage sometime this weekend, too, since he now has a garage door installed.
I also upgraded the MT-Blacklist upgrade from jayallen.org. After getting comment-spammed twice, I decided to try and do something about it. Haven’t had any more comment-spam attempts (according to the logs) but hopefully I’m protected!
I will probably check back with the neurologist next week and find out if they know anything. We’ll see …
Hi,
I am having the same problem you are and it is amazing to hear someone else explain these awful feelings that I have been dealing with for way to long. I am very interested in how your doing.
Charlene
Charlene,
Sorry to hear that you are going through the same kind of thing. I know it’s hard to deal with, but hang in there.
I hope that the neurologist will tell me something new this week but I suspect that I will just hear that everything is normal and that my problems are of the idiopathic kind.
Still, it will be okay whatever the results are.
Good luck!
Hi,
Here are a few things I have noticed that have helped with the off-balance, spinning, and anxiety:
Drink alot of water
No caffine at all
the eply manuver, you really need to find a person that knows what they are doing. Does the spinning get worse in certain positions?
stop eating all wheat products, which is in all the good stuff we crave, one Dr. told me there have been studies to show that wheat can cause dizziness.
I took Paxil for the anxiety for four months, and really wanted to get off it, so I did.
Last week I started sneezing intensely, and lots off drainage. Later that day my ears felt so clear, and I felt like a new person. I went to the ear Dr. who said my eustachian tube showed some blockage.
Anyway, I downloaded your chron and read it to my husband. Hearing your stories made me feel not so alone with this thing. We enjoyed your writing, and you sound like a great guy. It may sound crazy, but you have given me HOPE to handle this thing.
THANKS
Charlene,
First of all, thanks for your kind words!
Just wanted to let you know that I heard from the neurologist that the brain-stem test looked normal (although they wouldn’t confirm that I do, in fact, have a brain …)
I’m still waiting for his analysis of the lab work, but I suspect it will be that everything looks normal. C’est la vie!
You are right about drinking lots of water. I used to drink maybe one glass a day, now I drink water all day long. In fact, I have been trying to do everything healthy I possibly could.
Over the last several months I have given up smoking, stopped drinking caffeine (at least as much as I used to!), all but stopped using stuff with aspartame in it, eating much more healthy meals, and more.
I have had the Epley maneuver but it never really did much for me. I suspect what I have isn’t BPPV.
Still, it’s getting to be okay to just have these symptoms.
How did you handle getting off the Paxil? I’ve felt completely normal (mentally, anxiety-wise) for several weeks now, but I don’t want to fall back to how I was feeling before I was on it.
But I don’t like some of the effects it’s having on me. Also (if you don’t mind me asking) what dosage were you taking? I was started at 12.5 mg, but continued to have anxiety attacks. He bumped it to 25 mg, where I am now.
Hi there,
I started on 10mg and 2 weeks later normally you move up to 20mg. That night I took 20 I was so anxious I didn’t sleep at all and had my husband had to take me to emergency where they gave me something that knocked me out for about 2 hours. Sorry I don’t know the name. The Dr. at emergency said that the Paxil can do that to some people so stay on the 10mg. When I went off the 10mg 4 months later, I went down .25mg every 2 weeks. I have had some anxiety since then, but my mind deals with it better. I have two other friends on Paxil, and they swear by it. Just recently I have decided, after talking to the audiologist, that I am going to find a therapist that deals with patients with vestibular problems. I get scared when I have to go places ( usually farther from home than I usual go) that I will feel dizzy! I have read other peoples stories on the internet and this is a common reaction. Again, your stories have been the most positive I have read, thanks again.
One more thing I have going on is the muscle on the left side of my shoulder, neck , jaw, and up into my head stiffen up and throw my balance off. I have had a hard time explaining this to the Dr. but they definately can feel the muscle tightness. I saw a therapist that thinks it’s Thorcic Outlet Syndrome. This therapist is the GURU on the syndrome, his name is Peter Edgelow, and luckly he practices right up the street from me at UC Med San Francisco. So I have had all the strange nerve type of problems that you have described. Do you seem to have more problems on one side of your body? Anyway, I will say bye for now, have a great weekend, and a Happy Thanksgiving. Don’t settle for your symptoms, you are not alone.
Charlene