How is everyone?

This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: How is everyone?

Post by gloria »

Hi Helen AZ & Di:
Thanks for revisiting the subject of Vitamin 12 and in answer to your questions about OT and Vitamin B 12 we have had discussions and trials by OT friends of B12 before on the website. It might be interesting for you to read some of these discussions. ( Login first then go to Search top right side of page and type in Vitamin B 12. Hope this will help, however you might still like to try it anyway.

Gloria
MaureenB
Posts: 59
Joined: Mon Mar 22, 2010 4:24 am
Location: Southport UK

Re: How is everyone?

Post by MaureenB »

Hi
My G P let me have a trial of Vitamin B12 Injections, as i as convinced it would help.
Unfortunatly for me they made no difference at all,However i wish you luck, who knows we are all different.....best wishes Maureen... :wink:
HelenAZ
Posts: 2
Joined: Sat Apr 14, 2012 2:04 pm
Location: Surprise, Az

Re: How is everyone?

Post by HelenAZ »

Unfortunately, I know that Vit B12 cannot be the answer for me because my blood tests show that my levels are over the top. What I am planning to do is stop all my vitamins and supplements for two or three months and then re-introduce them one at a time just to see if I am taking something that is causing the OT
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Good morning all ~ and HAPPY MOTHER'S DAY to all you mothers,

I was put on Vitamin B-12 at one point, but was taken off when my blood tests indicated my levels of B-12 were too high. It didn't help my tremors, but as Maureen said, "we are all different"; and we continue to try different things.

Keep us posted....
Betty
cinsim1@yahoo.com
Posts: 22
Joined: Tue Jun 12, 2012 10:27 pm
Location: Carlsbad, CA
Contact:

Re: How is everyone?

Post by cinsim1@yahoo.com »

Hi everyone, I live in Carlsbad, CA and have had OT and ET for at least 15 years. I'm 57 yrs. old. My dad started showing OT in his late 70s. He's 84. I could relate to Mike's comments about this condition and I know how he feels. My biggest problem is shopping when I can't get past people who block the aisle and don't care to move their cart over so I can get by. I get pretty cranky, so my husband usually goes with me, and I sit on the bench while he gets in those long lines at the checkout. I recently got a chair that folds into a bag (looks like a computer laptop bag). I like it because it's very sturdy and has arms that I can hold on to when I need arm support. Every once in a while, I like to read your comments, tips, and concerns to help me with this problem. Thank you for sharing, it is so encouraging to know that I'm not alone w/ this.
cinsim1@yahoo.com
Posts: 22
Joined: Tue Jun 12, 2012 10:27 pm
Location: Carlsbad, CA
Contact:

Re: How is everyone?

Post by cinsim1@yahoo.com »

I forgot to mention that I was taking B2 (not B12) and it helped for awhile, but I don't take it anymore. My mother-in-law takes it for her head tremors and she says it works great for her. Yup, we're all different. I also took Clonopin (1/2 tablet) at night, because it made me too sleepy during the day (I was teaching at that time, so staying awake was kind of important). I quit taking it at night because I became dependent on it to get to sleep.
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hello Cinsim.....

Just thought I would comment on your posts. My mother and dad both had similar tremors as I before they passed away, but I thought it was due to their medications. My dad passed away in 1994 and my mother in 1999; so I am unsure if they might have had OT. I found out I have it in about 2000; so we'll never know.

I can relate to your shopping experiences; I find it so difficult to shop, especially in crowded places. I can do it, but it is exhausting for me. It is much better when my husband is with me. I hold onto the shopping cart until we get to the checkout line, then I go and sit and wait for him.

You mentioned you have a chair that folds into a bag; could you give the name of the chair or perhaps a link when we might check that out? It sounds nice, and would be so helpful when we have stood as long as we can.

You are fortunate you found Gloria's site; all who have know when we read the posts of others, we have many friends here, and now you will find you have many friends too. We all understand what you are feeling, and want to be as helpful as possible.

I also noticed you live in Carlsbad, CA, one of my best friends lives there too.

Stay in touch and let us know how you are doing.

Betty
cinsim1@yahoo.com
Posts: 22
Joined: Tue Jun 12, 2012 10:27 pm
Location: Carlsbad, CA
Contact:

Re: How is everyone?

Post by cinsim1@yahoo.com »

Hi Betty, thanks for responding to my post. I haven't had a chance to read all the posts, but regarding those that I have read, I feel so grateful that there's others just like me with the same exact issues. The chair that I bought was from a Hammacher Schlemmer catalog and it's called a Pico arm chair. It looks like a director's chair, weighs 9lbs. in the bag (I make hubby carry it), and fairly easy to fold out, once you get the hang of it. It's expensive, but made to last, highest rated among folding chairs, not one of those cheap camping director chairs. When my family goes to car shows, fairs, or other places where there are not many places to sit, it's a God send. Stools are uncomfortable for me because I feel the need to hold on to something with my hand tremors. It's also very sturdy and comfortable. Boy, I sound like a commercial, they should hire me!!
Since we're almost family now, I'll share a funny story that happened to me a couple of years ago to hopefully give you a laugh. My husband (retired handsome fire chief) and I were at a restaurant where you have to get your own drinks and ice from the machine. I usually put one of my hands around his arm to help with my balance so I can get my own drink. As I did this, I heard him say from a distance behind me, "Cindy, you've got the wrong arm!" I looked over at this incredibly cute young firefighter in his uniform looking at me like I had lost my mind. I politely took my hand off his buff arm and said, "Sorry." We had a good laugh about my mistake, but I did tell my twenty one year old daughter that if she was ever wanting to meet a cute guy, she could just pretend that she has problems standing just like her mom and could use a little assistance. She, of course, just rolled her eyes at me because she sometimes thinks her mom really has lost her mind! LOL
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hi Cindy,

I loved your story and sounds like something I have done also. I have been know to grab an arm, thinking it was my husband, only to find out it was a stranger.

Thanks for the information on the Pico arm chair; I will check online and see what I can find. I know there are a lot available, many on this site have them, but I haven't yet purchased one.

You mentioned you have had OT for 15 years; where were you diagnosed and how long did it take? For many of us it takes years. It did for me. I saw eight Neurologist and it was over a period of about 12 to 15 years. Once I found out what I have, I found Gloria's site and felt so much relief to find there were others like me.

Gloria's site has been a God send to all of us; she continues to enlighten and encourage us.

Continue to read other posts, you will find a lot of information here.

Stay in touch, and stay positive.

Betty
cinsim1@yahoo.com
Posts: 22
Joined: Tue Jun 12, 2012 10:27 pm
Location: Carlsbad, CA
Contact:

Re: How is everyone?

Post by cinsim1@yahoo.com »

Hi Betty, I started noticing standing problems, swaying problems, and shaking in my hands in my mid forties. I thought I was drinking too much caffeine (diet coke and coffee) during the day teaching fifth graders. I asked others about what was going on w/ my body and got a 101 different answers. I saw three neurologists including the doctor en charge of the department. They said that my shaking hands were an Essential Tremor problem, but they had no clue about why my legs were shaking when standing. They told me to teach on a stool, but I already had been doing that for a couple of years.
I joined an Essential Tremor forum (TAN) and one of the members thought I might have OT and to see a movement specialist. I see Dr. Melissa Houser and her nurse practitioner, Sherry Gould. The doctor confirmed that I had OT and said that she sees about five people in the San Diego area. She is at Scripps Torrey Pines in La Jolla. Like many other doctors, she tries new meds on me which give me bad side effects, so I'm now drug free: no longer dopey, sleepy, a zombie, but shaky. I'm pretty good at hiding it, but if there is no proper chair for me to sit in, everyone sees how I change into a bobble doll.
LOL! Cindy Simpson
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Good morning Cindy,

My goodness, you were young when your symptoms first started; it must have been difficult to teach not knowing what was wrong with you.

I, too, have Essential Tremors, but not until AFTER I had OT. I don't know if the two are connected; have been told that isn't the case. But often people who have OT do have ET, but not always the other way around. With ET, I find I am now clumsy, which was never the case before. I just must be more carful when reaching for things.

You were fortunate to find a neurologist who was familiar with OT; most are not. I understand about medications....I am very sensitive to almost everything and am unable to take Neurontin, which most find helps best. I have tried a "laundry list" of medications, but have found the only one I am able to tolerate is Klonopin (clonazapam). I have cut my dosage in half, but my tremors are worse. Whether it is because of the reduction or just the progression of OT.

You are fortunate if you are able to be medication free; I feel that would be the best option, if it is an option.

I understand what you mean when you said you are good at hiding it; however, it is getting more and more difficult for me to do that. I have gotten to the point, I can no longer hid my tremors; so I just say, "I have a neurological problem", and let it go at that, unless I am questioned more.

I love your attitude....saying if you are unable to sit, you turn into a "bobble doll"! I think we all feel that way, but I haven't heard it expressed just like that.

Take care...
Betty
MikeS
Posts: 110
Joined: Wed Mar 19, 2008 2:51 pm
Location: Marbella Spain

Re: How is everyone?

Post by MikeS »

Hi
Well haven't posted for some time so here is a little update . Delighted with the news of the upcoming meeting in Omaha ,my favorite game of poker as it happens as well, and I am desperately trying to get well enough to be there .Unfortunately I have been in and out of hospital since end of July .My kidneys are being a little bit naughty at moment and have decided to start packing up, at stage 3 at moment stage 5 being the worst , I was meant to have some treatment on the 28th September but when we got there the nurse asked when I had taken my last medication I said that morning and was then promptly told they couldn't do procedure because I take a blood thinner then produced a leaflet and asked why I hadn't read it? .I said because they never sent it to me ....not a happy bunny I can tell you! Cut a long story short the treatment is now the 9th Oct and then there is 1 more after that so its leaving all arrangements a bit tight I cant book flights because insurance will not cover me for cancellation as its pre existing condition. Ok enough about that
Had an interesting thing happen when I was waiting to see a Dr at clinic my neurologist walked past with a student and stopped to say hi and asked what i was doing there I told him and he asked would I mind speaking with his student and tell about my OT as she had never studied it or heard of it I spent 20 min with her and now we have one more neurologist that has heard of and know symptoms of OT.
Ok that's enough of my waffle for now hope to see you all in Omaha
Keep smiling
Mike
:D
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hi Mike,

So good to see you are on the forum again. I do hope your health improves and you will be able to attend the meeting in Omaha. First and foremost, is your health; take care.

I had planned to be there as well, looking forward to getting reacquainted with those I have met, but it it isn't to be.

When I was interview by the doctor, I told him I have vertigo as well as OT and he told me he wasn't sure I would be accepted into the study. He would have to check with Dr. R. He did, called me a couple of days later and told me I was UNACCEPTABLE! :o Sooooo, I won't be attending this meeting and study.

I will be eager to hear all about the study and wish everyone well.

Take care, and good luck.
Betty
MikeS
Posts: 110
Joined: Wed Mar 19, 2008 2:51 pm
Location: Marbella Spain

Re: How is everyone?

Post by MikeS »

Hi Betty
The study is only part of it Just being there is so refreshing .Will you reconsider ?

Keep smiling
Mike
:D
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: How is everyone?

Post by Betty »

Hi Mike,

I realize the study is only part of the experience, but at this point, I have cancelled our hotel reservations and question whether we could get a good flight.

Also, since I was REJECTED! :o other things have been put on the calendar, so we won't be able to be there this time.

I am hoping there will be another in the future, and we most certainly will do our best to be there.

I will miss seeing everyone again, but will be thinking of all.

Betty
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