Medication

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

Moderator: gloria

jolarson
Posts: 77
Joined: Fri May 02, 2008 5:49 pm
Location: orange county, ca. usa

Re: Medication

Post by jolarson »

Good to hear from you Gloria. Yes, I do have a friend who lives here in Newport Beach that I have known for years and I hadn't seen her for a long time. Anyway, we connected recently and found out she too has OT. She is lucky to have a husband who is tremendous help to her and they do quite a bit of traveling, she with her rollator , etc. I am sorry I can't attend the meeting, oh how I would love to meet everyone. My daughter is in the process of moving to Arizona, the grandkids are scattered in work or college all over the world, so I''ll get all the news on this page. I am managing ok still alone in a way too big house but my son comes by regularly, thank heavens. I am still on clonazepam the only thing I take which helps with the terrible anxiety and shakes when I go out socially. I do not take it when I am home because I manage ok with all my stools everywhere!! Happy you are ok, I think we should be thankful we still are at our age!! I am now 86, still drive everywhere but I do have my son help me when I have a lot of marketing. Stay well lovely lady and I look forward to pictures. I would love to see a movie of chair yoga, if possible. Thank you again for your nice response, Jo
renaely
Posts: 33
Joined: Tue Nov 11, 2014 10:14 am

Re: Medication (Valerian Root & Beta Blockers)

Post by renaely »

Went off Primidone, as I became resistant to it, and Klonopin, which I detested, (watch out trying to get off this one!) and a few other drugs. Used Cat Nip tea and Valerian Root to manage the Klonopin withdrawal so I could get off it quicker.

Waited to get back to my "baseline"...and have now started on 1000mg Valerian Root (OTC) 1-2x daily and 20mg propranolol (beta blocker), slowly titrating to 120mg.

OMG! Within a couple of hours, my gait and tremor have improved DRAMATICALLY. Even in a stress positions. No significant brain fog, I feel so calm and I can barely notice my tremor and can now stand for more than 2-3 minutes without freaking out! I just cleaned my kitchen by myself! Though worked up quite the sweat doing it. Only side effects seem to be a little light-headedness, some tiredness (but I'm too excited to sleep!) and I have some pins/needles/numbness in my arms, legs and face. Now those are some side effects I can accept and they should fade while I titrate up.

Still waiting on the first side of bilateral DBS Surgery. They are aiming to reschedule me for January.
LinK
Posts: 4
Joined: Wed Apr 13, 2016 1:26 pm
Location: Virginia

Re: Medication-clonazapam new to it

Post by LinK »

Hi all, I'm new to the forum, the diagnosis and everything. My questions is this. I am on clonazapam (Klonopin) .5mg twice a day. It makes me so sleepy that I am sleeping most of the day. This of course will not do. I cannot go through life sleeping all the time. I know that sometimes it takes a body time to adjust to a new drug, so I figure I will give it about a week to see if the sleepiness goes away. I also haven't noticed any change in my tremors, but know this will take some time too.
My question is this, for those that have been on it, how long did it take your body to get adjusted to it, if you were having the side effect of sleepiness or dizziness? How long did it take before you you noticed any changed in your tremors? Did you have any success on this drug at all? From what I've read, this is one of the drugs that most people with OT have the most success, but also the rate is not all that great.
I just hate to be taking something that's not really going to be doing much good. I'm already on so many drugs because I'm bipolar.
Thanks in advance.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Medication

Post by gloria »

renaely: As most have been reading on the website I have been using Gabapentin as my med since I was diagnosed with OT because it is a" flush thru" med. It never stopped the tremors completely ( there is no such medication ) but served it's help during a good portion of my diagnosed OT life. However I'm now at the latter stage of OT age and I thought I would like to add Valerian Root to my "meds" to help quiet the tremors. I remembered that you were an advocate of it because it is a "natural medication" and added it to your regular medication. I have not purchased it yet and will check with my neurologist first but will keep all informed if it helps ease my tremors a bit. Gloria
james white
Posts: 2
Joined: Sun Aug 28, 2016 7:09 am

Re: Medication

Post by james white »

I have had OT for over 20 years. I first noted it after being on an intense workout schedule. I found out my legs shook after being on a nordic track for an hour. when lifting weights I had to lean against my bed. I had no idea what I had until I finally went to a doctor who immediately diagnosed OT. I am on 1mg of clonazapam an 5mg of buproprion. I don't see much difference so I am considering asking the doctor for something different. This is a very frustrating disease as you all know. No holiday parties or other social events without being the only guy sitting. Travel is tough- on flights I just ask for a wheel chair and that works well. It's great to know I'm not alone.
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Medication

Post by gloria »

Hello James: Thanks for posting your OT experience but sorry you like all of us have to learn to adjust our lives the best we can. Many OT friends keep trying different 'meds' to ease the tremors. I guess you do not lift weights anymore !!!!!!!! just trying to stand a few minutes or less is frustrating. I've had OT for 30 plus and everytime I reach another plateau I keep hoping the research that has been started will give us somekind of understanding or care or better still a cure ! I hope too that when we have another meeting you will join us......I feel it is the greatest 'med' we have so far. Chatting on the website is good too!! Gloria
Lake of the Woods
Posts: 264
Joined: Fri Dec 29, 2006 12:10 pm
Location: Kenora, Ontario, Canada

Re: Medication

Post by Lake of the Woods »

This is being asked of Renaely who posted that she had success using Valerian Root and proprandol (beta blocker).

It would really be appreciated if she could give us an update on if this is still working as it has been close to 1 yr. since she tried it.

Thank you

Peggy
renaely
Posts: 33
Joined: Tue Nov 11, 2014 10:14 am

Re: Medication

Post by renaely »

gloria wrote:renaely: As most have been reading on the website I have been using Gabapentin as my med since I was diagnosed with OT because it is a" flush thru" med. It never stopped the tremors completely ( there is no such medication ) but served it's help during a good portion of my diagnosed OT life. However I'm now at the latter stage of OT age and I thought I would like to add Valerian Root to my "meds" to help quiet the tremors. I remembered that you were an advocate of it because it is a "natural medication" and added it to your regular medication. I have not purchased it yet and will check with my neurologist first but will keep all informed if it helps ease my tremors a bit. Gloria

Gloria, I still recommend Valerian Root. Even after DBS surgery, if I've over done it for the day, I don't have enough amps left to override the tremor sometimes, so I'll take a low-dose Valerian. I also have high-dose Valerian for really rough days. It doesn't cross the blood-brain barrier, so it's non-addictive, unlike Clonazepam. It's also useful as a substitute for Clonazepam or to get off it with minimal withdrawal. I will say, my Neurologist didn't know what it was and she told me to go off it, after first being diagnosed. I did, but I regret it. If I'd gone back on it, instead of the Clonazepam to titrate back off my seizure meds, life would have been much easier.
renaely
Posts: 33
Joined: Tue Nov 11, 2014 10:14 am

Re: Medication

Post by renaely »

Lake of the Woods wrote:This is being asked of Renaely who posted that she had success using Valerian Root and proprandol (beta blocker).

It would really be appreciated if she could give us an update on if this is still working as it has been close to 1 yr. since she tried it.

Thank you

Peggy

Peggy, see my response to Gloria. I'm afraid this came through as a weird email from the Admin and I THINK I responded to you via email, but now see no evidence of that :)
renaely
Posts: 33
Joined: Tue Nov 11, 2014 10:14 am

Re: Medication-clonazapam new to it

Post by renaely »

LinK wrote:Hi all, I'm new to the forum, the diagnosis and everything. My questions is this. I am on clonazapam (Klonopin) .5mg twice a day. It makes me so sleepy that I am sleeping most of the day. This of course will not do. I cannot go through life sleeping all the time. I know that sometimes it takes a body time to adjust to a new drug, so I figure I will give it about a week to see if the sleepiness goes away. I also haven't noticed any change in my tremors, but know this will take some time too.
My question is this, for those that have been on it, how long did it take your body to get adjusted to it, if you were having the side effect of sleepiness or dizziness? How long did it take before you you noticed any changed in your tremors? Did you have any success on this drug at all? From what I've read, this is one of the drugs that most people with OT have the most success, but also the rate is not all that great.
I just hate to be taking something that's not really going to be doing much good. I'm already on so many drugs because I'm bipolar.
Thanks in advance.

Klonopin didn't work for me much, what it did do is put me in physical withdrawal at .5mg/day for a couple of months. Primidone worked best for me (for awhile), just about everyone else on here is on Gabapentin. You might ask for one of the seizure meds or a beta blocker if you want the tremors to decrease.
Lake of the Woods
Posts: 264
Joined: Fri Dec 29, 2006 12:10 pm
Location: Kenora, Ontario, Canada

Re: Medication

Post by Lake of the Woods »

Renaely,
Thank you for responding on the forum - I did not get a private email from you. I did send one to you.

I am curious if you have had DBS and it is working, why you would still want to take Klonopin?

I will check out the Valerian Root,

Thank you

Peggy
renaely
Posts: 33
Joined: Tue Nov 11, 2014 10:14 am

Re: Medication

Post by renaely »

Lake of the Woods wrote:Renaely,
Thank you for responding on the forum - I did not get a private email from you. I did send one to you.

I am curious if you have had DBS and it is working, why you would still want to take Klonopin?

I will check out the Valerian Root,

Thank you

Peggy

Peggy, I didn't receive your email either. I think I may have not been as clear as I was hoping. I had to titrate off my seizure meds to have DBS. They began taking me down in Aug 2015 without a surgical schedule...so I was put on Klonopin to help out. Then, my first surgery date (Oct 2015) was cancelled, so I spent a month getting off the Klonopin (I cannot believe how quick the physical addiction hits), using Valerian Root which I stayed on until just before my surgery (Jan 2016), combined with a short stint with beta blockers.

I really hope the Valerian gives you some relief.
Lake of the Woods
Posts: 264
Joined: Fri Dec 29, 2006 12:10 pm
Location: Kenora, Ontario, Canada

Re: Medication

Post by Lake of the Woods »

Thank you Renaely for this clarification. I am going to look into the Valerian Root as mentioned.

Best wishes

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

Re: Medication

Post by gloria »

Peggy & Renaely: I too have tried Valerian Root,,,,,,,,, my neurologist felt it was such a natural that I could try it. I did finally purchase some but found it was helping in making me very sleepy. I believe it was because my dose of Gapapentin is very heavy and more importantly I'm at the older end of living with OT and the med's I take are giving very little standing time. Hope you have better results. All the best, Gloria
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Medication

Post by gloria »

Hi! All:
I was wondering if anyone feels their medication has an affect on their memory ? I take gabapentin and I
find that it can blank out the word you want to use at times however gabapentin has been a good safe drug for many years. Nonetheless with aging OT is less responsive to meds but missed if not taken at all I have found. Gloria
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