Tremor Hell: I am still fighting... - Parkinson's Movement

Parkinson's Movement
17,222 members17,027 posts

Tremor Hell

ihateparkinsons
ihateparkinsons

I am still fighting dreadful tremors. I just did a trial of a new med called, Inbrija 42mg Inhailer powder form of carbidopa levodopa. Didn't help. It created unwanted side effects. I guess I will continue on with my Carbidopa Levodopa 25/250mgs. Several times per day. This is pure hell. With this tremor I could be a bell ringer for salvation army at Christmas with no problem. lol.

20 Replies
oldestnewest

Have you spoken to your neurologist about deep brain stimulation if meds are not working?

I know about DBS. It's not for me.I won't risk it. I have seen the results that a large percentage of patients suffer after the surgery. It can't be undone if results are not favorable. It is a roll of the dice. A box of chocolates, you don't know what you're going to end up with.

When my brothers meds stopped working, that is when he had DPS. However, there are now more alternatives discussed in this community.

HiddenThis reply has been deleted
Mezzomom1
Mezzomom1
in reply to Hidden

Can you tell us more about how you ordered the herbs and what you took? Thanks!

LAJ12345
LAJ12345
in reply to Mezzomom1

This might be a scam? I think I have seen this product promoted then the post deleted before??

WinnieThePoo
WinnieThePoo
in reply to Hidden

Thank you for replying to this post moments after joining the forum with a proofed perfect lengthy post where the advertisement link has spaces in ww w and c o m . Was this to avoid detection?

Search on this forum fir FUS. It’s an alternative to DBS. You may find it’s a possible alternative to DBS.

WinnieThePoo
WinnieThePoo
in reply to rebtar

Yes, but also see ian frizzels vlog about dbs. Fus looks to be a promising new treatment but dbs is established, reversible and has a good track record

Me also nothing works for the tremor, have had 10-01 a Thalamotomie leasie operatie, tremor is gone now. 👍

Have you tried just laying down on your bed and literally relaxing, allowing your body to deload and meditate a little bit. Like continuously trying to remove the idea of shaking from your head, sounds dumb but it works for me.

I hope it can help you friend, sounds like your in a rough patch

Sometimes it helps. Thanks AaronS

My husband has a tremor. He also had dibs in 2016, it has really made a difference for him. His tremor is hardy noticeable most of the time.

caitilin
caitilin
in reply to AaronS

Hi Aaron,

My tremor keeps me from lying down to rest or sleep. It becomes unbearable at bedtime unless I take a dose of Carbidopa Levodopa 25/250 mgs. Actually, my tremor wakes me precisely every 4 hours, to dose myself. Tremor doesn't bother me too much during the day unless my body is still. In addition to CL, movement is, for me, the only thing that relieves the torture of tremor.

have u tried artane? Thats the only thing that helps my significant body tremors. I also take c/l but that doesn't help my tremor much.

GODSPEED! Ive been on 25/250 five times a day, taken every 4 hours, for a year now, also requip three times a day, I still go through 30-45 minutes of the bugs crawling under the skin, cant stay still feeling, makes me want to pull my hair out, also have mild to moderate tremors and mod-severe weakness in my legs.

PCP put me on a low does of ativan .5mg twice a day, its a benzo, in the xanax family of drugs, I hate benzos but it does help get me through the rough five hours of "off" time during the day but it can be very difficult to taper a benzo, I know first hand, went through hell with Xanax a few years ago tapering!

I was having uncontrolled body tremors but my neurologist said it was dyskenisia. She prescribed Amantadine syrup and suggested I might cut back slightly on the amount of carbidopa/levodopa. I had self medicated with more c/l thinking that is what I needed. Both have helped. I also have cbd oil to help me relax and I take that at bedtime. Good luck.

Hi Lady,

Speaking of uncontrolled movement, i was sitting at my pc a few days ago, hand on mouse and started to doze off (always tired due to insomnia getting 3-4 hrs sleep a nite) anyway was dozing off , all of a sudden my whole arm jolted right across my desktop knocking the mouse and keyboard onto the floor after hitting the wall, lost a couple of keys but survived lol.... yes they said no more c/l at 1250mg a day now, they recommended DBS three months ago, I told them I would rather take 200 pills a month then have that surgery done, I'd rather go home to the lord first......

GODSPEED!

You may also like...