Diagnosed but puzzled

[Charee]

I was diagnosed on my last stay in the hospital a month ago. I was admitted with TIA but after seeing a Neurologist, he immediately diagnosed me with OT.

I was placed on Clonazepam 0.5mg. I do not have tremors every day. I can tell when I am about to have an episode because the right side of my body starts to hurt. Other times I get the tremors when I sit for a long time or wake and step out of bed.

After reading the posts on the "Visitors Page" no one mentioned having pain on one side before an episode or having days when there are no tremors.

My questions are does the medication control the tremors to the point where there are days without tremors. And also is it normal for the pain to be on one side of the body.

[Lorie M]

Welcome Charee,
I see you have just posted. This is a great site but it would be better for both of us if we did not have to join, right?
I have had tremors for many years but not as bad as many people. I hurt sometimes, in fact after biking yesterday my left side was really annoying. I do not know what that is all about. A lot of the symptoms are puzzling. Sometimes my family doctor(very good by the way) tells me my problems may be caused by "my other condition." (meaning OT)
I tried many of the drugs people have mentioned with bad side effects. A neurologist told me to try lorazapam and so far that is helping the most. Along with Co enzyme Q 10 and Vit B and C.

Try to join the group at Atlantic City in Oct. It was helpful to meet people when we met in Rochester a few years ago.

Take care.
Lorie M

[Betty]

Hi Charee,

I also welcome you, but sorry to hear you have OT. As Lorie indicated (Hi Lorie!), this is a wonderful site and you will receive lots of support for others with OT.

Thanks to Gloria and Jeff, we have this excellent site we can ask questions, and receive answers. You will find a lot of support here.

I have tried, as many will say, a 'laundry list' of medications, but I am one who is very sensitive to most medications; so I, too, take Clonazepam ~ 2 mg. 2 x daily ~ with no side effects. It does not eliminate my tremors, nor ability to stand for any length of time, but it does help a little. I have also developed an Essential Tremor in my hands; especially when under stress.

The stress I mentioned is when I am in a social situation when I must TRY to stand and talk to people; and when I am in 'close quarters'; such as a crowded room. When I feel I have no place to lean or sit, my tremors are severe. I don't think I am the only person to feel this way. It seems to be common.

You mentioned: "I can tell when I am about to have an episode because the right side of my body starts to hurt."

I have not experienced anything like this, but each person is different. However, I do experience pain or numbness in my feet and legs when I have been on my feet too long. I also have cramping in my feet and legs. I think that is caused from 'curling my toes' trying to keep my balance. Have you experienced anything like that?

One of your questions: "My questions are does the medication control the tremors to the point where there are days without tremors."

I have not experienced ANY days when I am without tremors; even with medication. I think others who are able to take different medications may have experiences of being 'tremor free' for short periods of time.

Your second question: "And also is it normal for the pain to be on one side of the body."

I have not experienced this, but there may be others who have. If so, they will probably respond after reading your post.

Now, for you Lorie; you wrote: "A neurologist told me to try lorazapam and so far that is helping the most."

Lorie, is this in the same family as Clonazepam? I have not heard of this one, but may ask my doctor about it. As you know, we are always looking for something new to try and hope it will help.

Charee, if at all possible, do try to plan to come to the meeting in Atlantic City; you will find so much support and help from others with OT. I met Lorie at the meeting in Rochester when we met at the Mayo Clinic.

Also, one last thing; you might want to go back to your PROFILE PAGE and add where you live. It is most helpful to others; you may find you live near someone else with OT and you can get together. You don't have to put your address, just your city and state. It is helpful to Gloria as well.

Good luck to you and keep asking questions!

Betty

[Lorie M]

Betty, Charee,
Hello from MN,
I understand that lorazapam is very similar to clonazepam. It's primary use is not for seizures as most of the other drugs that are prescribed. When I took most of those other seizure drugs it made me shake all over. Even difficult to comb my hair. Unless I wanted a really modern up twist like some of the young guys have now, it did not help me. I do have a weird reaction to any kind of drugs. I wonder too if taking Vit B and coenzyme-Q-10 helps since I have been told to take both many years ago. At least at the Rochester meeting it seemed like I could stand longer than a lot of people. A neurologist told me years ago that Co-Q-10 has something to do with synapses being helped with the jump from one to another?? It has something to do with the nerves so I take it. What do I know!
Take care. I hope you are enjoying the summer.
Lorie M

[Abinadi]

I have elected to not take many of the prescription drugs which various OT sufferers have mentioned on this site - both because of the seeming paucity of results for so many, the apparent side effects many have experienced and finally because in the past, many prescriptions for other maladies have proved ineffective for me. So I go it alone.

But because my symptoms while significant and life altering to me, do not seem to be as severe as some of you have described, I find myself wondering if the herbs, vitamins and supplements that I do take every day have somehow mitigated the effects of OT for me.

The problem for me (in wanting to share what I know with others) is that I really have no way to determine this, short of as an experiment by going off of everything - a drastic remedy to the problem of not knowing the true cause and effect of such things as niacin, vitamins B50, B12, C, E and D-3, tumeric, Co-Q10, zinc, calcium, MSM, lecithin, lysine and fish oil - all of which I take faithfully everyday.

Without comprehensive scientific research it does all seem to be kind of a "crap shoot". Like throwing dice, you really don't know what is going to be the result. So in the absence of knowledge, we experiment and each of us gets different results.

As we say in Spanish - ¿Quien sabe? (Who knows?)

[Charee]

Hi everyone.
Thanx for responding. At this point I'm learning as much as I can about OT. Being just diagnosed I have tried to keep somewhat of a diary of when I get tremors. After looking over it I don't see too many days when I didn't have them. Even if they were short lived. For the past 5 days I have not been without them. Its just that some days are worse than others. Its been life changing.

Lorie mentioned bike riding. I have been skeptical about what I can and cannot do for fear of what might happen. After reading a little it seems that at some point I will feel comfortable enough that I won't feel so limited in what I can and cannot do. So far the Clonazepam hasn't seemed to make a difference. I will have a better idea of what medications would be more effective for me once I start to see my new Neurologist this week.

Betty I'm from Ft. Lauderdale, Fl. I will take your advice and update my Profile. I can use a support group.

Abinadi I thought about not taking the medication and trying herbs and vitamins but don't know enough about OT or the effects of medication to go that route. At this point I'm grateful for the days when the tremors are not so bad. After having them for the past 5 days I'm puzzled as to whether this is as good as it gets.

Thanx everyone for being here for me and thanx to Gloria and Jeff.

[golfnut]

Hello Charee,
a diary is exactly what my therapist has suggested for me. What I do (that is not "normal" sunch as gardening - silly me, that was stupid!) on a day, how I feel in general (are the hormones at work so to speak), what exersises I do aso.

I have tremors every day in both legs. Nowhere else and I only feel it very clearly when standing longer than 40 seconds but I also realise that the tremors are there when I walk as my legs get so very tired.
I'm now doing relaxing excersises morning and evening and taking special medications for relaxing muscles for 14 day's - just to try and help the leg muscles a bit. (I think they got an overdose of walking as the golfing season started!) Then I will do excersises to increase strenght in the core area aso - all to help the body become stronger in general in order to cope better.
The thing I find the most problematic is that I forget what I can and cannot do, until I'm in the situation! Oh yes, let's go see the new exhibition at the museum! Bad idea - slowly strolling and looking = possible but extremely tiring...
Bicycling in regard to balance would be OK for me I think, but not when it's hilly - too tiring to press down the pedals!

Oh - one more thing about medication: the drug I take (a valproatic acid) has increased the time I can stand without shakes from 20 to 45 seconds. To me, it's a big help as I can shower better! But I hardly think any drug can erase the tremors.. Perhaps there are other things (see my weighloss & muscle fatigue thread for my latest wild ideas

OT is very much about finding out how to handle the challenges we meet every day, and finding solutions!
Take care!
golfnut