This is my first post on the forum, I'm 37 and was diagnosed just over 12 months ago. I have been taking azilect for 12 months and took amatriptyline from March to August last year but came off this due to serious side effects. I have been on amantadine for almost 4 months now(100mg twice a day) however I am struggling to sleep for more than 2 or 3 hrs at a time. I usually sleep from 12 midnight to about 3am and then from about 7am to 8 am. The lack of sleep is really getting to me and as its not improving I've stopped taking my meds ( i go back to my consultant next week), however as a result i can't use my left hand and my tremor is much worse.
Has anybody experienced similar problems on this medication? and if so did the sleep problems ever get resolved?
I'd also appreciate hearing from anyone with early onset pd with regards to the meds they take, my consultant is reluctant to prescribe anything too strong at this stage.
I'm not sure I fit the definition of "early onset pd". I'm now 47 and was diagnosed around 18 months ago. My PD symptoms are still very light and haven't evolved much since DX. In case you wish to see what I'm doing, just take a look at my recent post in this threat http://www.parkinsons.org.uk/pdsforum/posts.aspx?forum=treatments&topic=selegili-2
which describes my current approach to meds and other stuff I believe are helpful with pd. I obviously can't be sure if what I'm doing is good or bad nor nor if it's appropriate for anyone else... but it's what I'm doing and maybe will give you some valuable ideas. If you need any additional details on what I'm doing, don't hesitate to ask. Best of luck,
hi sam, i was diagnosed nearly 10 years ago and when first diagnosed i was not to bad symptom wise so i did,nt take any meds for 4 years until the time came when i had to listen to what my body was telling me and i knew i needed help, the symptoms you are describing make it sound as though you do need something i am currently taking amantadine the same dose as you with know side affects i was given them to try and settle the dyskinisia,s down which they have done they have not stoped them but they are not as bad i also take azilect, along with mirapexin, sinemet, and stalevo, i am lucky my pd has not deteriorated to quickly, but if i were you i would persevere with the meds until you see your consultant they need to try something different it is a case of trial and error its hard but hopefully you will find a happy medium chin up sue.
everyone is different and has different results from meds. I found amantadine to be very bad as a first med. it is mostly used later on.
as a first off med it is considered to be a somewhat idiosyncratic choice. more normal is a dopamine agonist or levadopa or both.
IMHO your consultant is giving you something that is dodgy rather than the normal
treatment under the mistaken impression that it is harmless.
I am sticking my neck out here and expect it will be cut off but I feel strongly that amandatine is not a good first med.
Exactly how this drug works for Parkinson's isn’t known yet. It may modify levels of certain chemicals in the brain.
It isn't used very often and is most likely to be given along with other drug treatments for Parkinson's.
The drug has only a mild effect, helps only a minority of people and its effectiveness may be short-lived.
on the other hand some side-effects are very serious indeed.
IMHO it is a crap medicine for early pd.
my last post was a bit intemperate - apologies.
Hello Sam28, Best Wishes for the New Year, I`m Cowboy101, it`s my Wife who is the Parkinson`s sufferer and when I pointed your letter about Amantadine out to her she was horrified and looked Amantadine up in her DRUG TREATMENTS FOR PARKINSON`S book which is available via parkinsons.org.uk/publications or `phone 01473 212 115. The book is free, lots of info in there about that drug and other drugs. Best of Luck for the Future and ,if you can, please let us know how you`re getting on! Thumbs Up,Cowboy101 and Wife!!
I was diagnosed 8 years ago and am now 52. I have been on Mirapexin and Sinemet for some time but am having problems with clawing toes which are causing deep callouses on my toes and making walking quite difficult.
The Consultant has just prescribed Amantadine to relieve the clawing, but I only started it yesterday so no idea as yet how I will get on.
Will let you know how it goes, but with most Parkinsosn medication it takes some time to see what suits. Hopefully no problems with sleeping as it is already very limited!
Hope the Amantadine helps you, but it does seem a strange drug to use as a first attempt at treatment.
Hi gfcexlile' my husband has had Parkinsons for 12 years and clawed toes for 3-4 years.
If the drugs don't help< and I hope they do!....
My husband has just had an op to straighten all his toes. It was done under an epidural and was very straightforward.
Bit faffy walking around in velcro sandals and showering in two bin liners on feet but no pain and now after 6 weeks 9 straight toes and one stuck out!
That one to be dealt with by strapping down.
Well worth it as now walking much better and no more blisters.
Hope you don't need it doing but not to be feared if it comes to that!