need relief from aggressive tremor

[alanrob]

does anyone have an aggressive tremor?if so what do they find useful meds wise,its ruining my life,cant get any relief.

[rhougham]

hello alanrob,i also had aggressive tremor until i under went dbs surgury.it gave me my life back.it not only stopped the tremors but ifeel much better also.i had the procedure done on 12/1/10 and it's been fantastic for me

[honeycombe3]

Alan, I don't know what you've tried before or what meds you are currently taking but the best treatment for my tremor was Orphenadrine (UK brand name Disipal). For me this worked really well alomgside Requip xl 16mg daily.for 3 yrs. I stopped taking it very reluctantly as it was causing unaccaptable side-effects.I recently replaced the Disipal with 125mg Sinemet - it is not so good but I don't want to increase the dosage. Any ideas?

[alanrob]

hi honeycombe,i was told that trihexiphenodyl (sometimes called artane)were good for tremor in most cases,unfortunately they are having no effect on me but they work for others.

[Jerebet]

Hi Alan, My best advice is to go back to your Neurologist.There are some drugs like Requip and Mirapex that calm tremors.Stationary biking calms my tremor when the meds don't. I don't know where you live but in my state Medical Marijuana is legal and it helps too.

[alanrob]

Thanks jerebet,i think the neurologists are fed up with me i,v had 4 already,still no further forward,had most of the meds available,maybe marijuana is the answer!! i live in the UK.

[Rosabellazita in reply to alanrob]

Ive had five neuros and im sick of the fifth one! I need to try med mar.but not legal in va.

[Hikoi]

Hi Al

What have you tried? And what do you take now?

[alanrob]

Hi hikoi. i,v had sinemet,madopar,azilect,selegeline,amantadine,stalevo,entacapone,artane,rasagaline ect,no dopamine agonists because the neuro thinks they arent worth the risk of ocd,he doesnt think they will have any effect anyway,but i,v said i,m desperate and will try anything,i,v also mentioned DBS to him.

[alanrob]

i take 2 sinemet 4 times a day,and artane 2mg twice a day now,but its just getting worse i cant even sit and have a meal without it ending up on the floor.

[alanrob]

Its not something i would have ever considered before but the tremor is so bad i,m going to ask to speak to a neuro surgeon to explain the procedure to me.i know there are certain people who arent suitable for surgery for one reason or another

[honeycombe3]

Hi Alan, Is there something you're not telling us? I think you've been dxd 6 years in UK, you've had 4 consultants & taken a pharmacy of meds but as yet you haven't tried agonists. I can understand 1 consultant having reservations about agonists because they MAY cause OCD but if 3 others concur perhaps you have another medical condition which could preclude their use. The reason for my concern is that on dx 8 yrs ago (age 55) I started taking part in

the PD meds trial run by Birmingham Uni. This looks at the 4 most popular drugs chosen by consultants at dx. The random allocation med I got was Sinemet usually prescribed to older patients. My consultant’s choice would have been an agonist.Suffice to say I’m still taking the agonist Requip & we’re attempting to phase in Sinemet. I have tried other meds at various times for various symptoms but as they take time to build up to a therapeutic level so that their effectiveness can be judged then over the 8 years there haven’t been very many. Perhaps you aren’t allowing enough time on each drug to reap the full benefit – or to be able to judge? Re the number of consultants you have seen: have you perhaps moved around a lot? Reading your PD history I wonder how old you are, the dosages of current meds & where you live?

[alanrob]

Hi honeycomb,i told the neuro that i had gambling tendencies some years ago,so the decision was not to give me DA,s which i suppose is his safeguard against this becoming a problem,although to my mind its a bit obscure,i,v had PD since i was 43, nine years now,i live in northern england and the changes of consultants was at my request to try and get another perspective on my symptoms and treatment,i currently take 2x 25/100 sinemet 4 times a day and 2mg of artane twice a day.all the meds i,v had in the past i have given at least 8 weeks to have any effect but non have.

[MagicMax in reply to alanrob]

Hi Alanrob,

My neurologist says there is a small window: too little levadopa and you have a tremor, too much levadopa and you have a tremor and dyskoneisa {SP Sorry}. Trihexiphenidyol helped me for awhile.

[alanrob in reply to MagicMax]

Hi mm, i have tried higher doses of levadopa but it gives me painful dystonia,i cant seem to win.

[honeycombe3]

Alan, I’m so sorry you’ve had such a negative experience. It seems that the quality of medical provision in UK is very hit & miss. Perhaps it’s because I live in a rural area that our support network is so strong. That may sound silly when I say that my GP practice has just 3 doctors all of whom work part-time & my consultant is a gerontologist not a neuro etc etc.

BUT

They all have time. They are not so stressed as their city colleagues so they have time to listen, to talk, to share, to empathise & to either enable us to find out more ourselves or to research any concerns raised & discuss the results.

I wonder if you have considered taking part in any trials? If you can find one recruiting in an aspect that would be of benefit to you it might be worth a shot. Trials are run by experts in their given fields & thus absolutely up to date with the latest thinking. As they network with similar professionals this can extend their potential. The ones I have met are more than happy to share that expertise .

[carolineb211]

I think you need to try medications for a little longer Al. Eight weeks isn't really very long as I have found neurological drugs seem to have a buildup effect over time.

each of the medications I have tried, I have tried for six months before admitting defeat. That way I know I've given them a fair try, perhaps you could try sticking with them a little longer to see if it makes a difference?

[Rosabellazita]

I do. I have not been able to calm it down. Tried senimet. Didnot phase it so i stopped it. Please let me know if you find anything to help.

[Rosabellazita in reply to Rosabellazita]

When i say i do...i meant i do have a aggressive tremor

[Rosabellazita]

I still have not found anything to help my tremor