Drugs

About Parkinson's and health Treatments and therapies
1

I have been told I have both Atypical Parkinson’s & Peripheral Neuropathy. If you research both diseases you will see that a lot of the symptoms are the same or similar. Plus of course the overlying problem is our brain. So in theory if one drug helps the Peripheral symptoms then it should help the Parkinson’s side as well.
Also no one really knows what symptoms go with what disease. There is a lot of guessing going on.

I have been put on & taken off two Parkinson’s drugs to treat my Atypical Parkinson’s disease. My Neurologist said that if Madopar or Ropinirole were going to work then I would have known almost immediately. Plus Atypical Parkinson’s is unlikely to benefit from Parkinson’s drugs anyway.

So at 9pm last night I took my first 10mg Amitriptyline pill while watching TV.

After an hour I felt very tired, went to bed & had a brilliant night’s sleep. A good
9 hours, normally I only sleep for a few hours or not at all.

Will my GP or any health professional prescribe sleeping pills ? Nope. They say they are addictive. I think I should have been prescribed sleeping pills. Of course I’m going to suffer from fatigue if I don’t sleep. Boy it makes me angry. Everyone suffers because the minority abuse sleeping pills.

I do still feel tired this morning as I was told I might. I also took a
Blood Pressure reading first thing 110/75, which is healthy says the NHS BP site. Usually my first thing readings are in the 135/85 marginal sort of range.
I am on high blood pressure pills, so in theory I could stop taking the BP pill,
another positive. I am not normally a fan of taking pills.

So a very good night’s sleep & I do feel better walking & getting about the flat, turning corners etc. Although I can’t put my finger on what feels different. All after
1 x 10mg pill.

Interesting that the drug is used as an antidepressant. Although I’m not depressed I’m just pissed off.

Benefits are relaxing the muscles … A big problem for me. I sense they might be better today than usual.

“If you respond well to amitriptyline, the effect on sleep is usually immediate, and your pain and mood will improve within two to six weeks. Because it can sometimes take a while to find the right dose, it’s often helpful to keep taking amitriptyline”.

“Another possible side effect is Weight gain or loss”. Well that’s everything covered
there then LOL … or your weight might stay the same.

The article is sponsored by Arthritis UK & I have Arthritis so an added bonus.

If other Parkinson’s sufferers are having no luck with their Parky medication this is a drug they might talk to their Neurologist about.

My main symptoms are … I don’t sleep well. I have fairly extreme fatigue. Slight tremor. Muscle stiffness. Swollen feet & ankles. Freezing. Balance & movement issues. Discomfort walking. Difficulty Instigating movement. My symptoms worsen after activity. My symptoms worsen after sitting down for a period.

Hope this helps someone or anyone that ticks some of my boxes.

Steve2

2

Hello Steve2, I’m just responding to the part of your post about amitriptyline being an anti depressant. I was told it wasn’t often prescribed these days for depression and is often given for the treatment of chronic pain, beginning at the lower dose of 10mgs. (My husband has PD by the way and I’m his carer.) To help him sleep he was prescribed Clonazapam which is helping him have a calmer night. I have a problem with TMD which affects the ear, jaw, teeth and face and when it flares up is very painful and Amitriptyline was prescribed to help this. The Dr also said it should help me sleep better too (it does!) So at a dose of 10mgs Amitriptyline doesn’t work as an antidepressant. I think a much higher dose would be needed if it was prescribed for depression. I hope you continue to benefit from the drug and I’ll mention it being used in PD to our Parkinson’s nurse as many of the symptoms you describe my husband also suffers with. Good luck with it all. Jean

3

Hello Jean1 … I think the Neurologist intends to up my dose if I tolerate it well. I am very keen on taking it just as a sleeping pill & anything else is a bonus. As I said I’m not depressed but others might be & your point is well made thank you.

I am fortunate in that I don’t have any “chronic pain”, just discomfort. Probably
2/10 or 3/10 on the pain-ometer.

I’ve only been taking it for 22 hours, so early days. But first impression is
8/10 maybe 9/10.

It was prescribed particularly for my Peripheral Neuropathy, as well as a swollen foot & ankle I have a nasty sore on my heel which sprung up for no reason that
I know of.

Also the fact that it lowers my blood pressure from high to normal is another positive.

Best wishes
Steve2

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I enjoy chatting so don’t be shy.

Steve2

5

To summarize I have Atypical Parkinson’s & Peripheral Neuropathy. Add to that
I’m 69 & have Arthritis in my spine & knees. I also took Felodipine for high blood pressure.

The “Amitriptyline” I have just started treats Arthritic pain so I’ve ditched the Ibuprofen I’ve been taking for 5 years & my GP says I’m too old to take anyway.

The “Amitriptyline” has lowered my blood pressure so I’ve stopped my Felodipine.

So now I only take one “Amitriptyline” pill & this same pill is helping me sleep & has made the cramped muscles in my calves so much better.

Good to have something positive to say.

Steve2

6

Do hope this works for you.
Please keep us all posted on your progress

7

Good evening KK1 … Thanks for your good wishes & interest. Strangely I sent an email to my Neurologist today. A copy is bellow. I had a DATscan about 3-4 months ago that showed I had one of the Parkinson’s.

Dear Dr G.

Thank you once again for seeing me on Wednesday 13th September at 4pm.
I have been taking the Amitriptyline 1 x 10mg at 7pm every day. 9 pills so far.
I am amazed at how much better I feel, having taken these pills.
I am having a really good night’s sleep. This morning I woke at 8am & felt so refreshed.

The stiffness in my calf muscles has completely gone & the swelling in my right foot is nearly normal & the ulcer on my right heel has just about gone & is there but no longer tender. I do not feel tired during the day, which I did for the first 5-6 days of taking the pill.*

I have for some time “stooped” but now stand tall. I wonder if the DATscan I had showed that I had Peripheral Neuropathy & not Atypical Parkinson’s, or whether Amitriptyline treats the symptoms of Atypical Parkinson’s & Arthritis.
Of course the last few days might be one off’s & I might feel bad tomorrow. But today has been my best day for some considerable time. I can also easily get up from my chair, whereas it was taking 20-30 seconds. No reply required … just for your interest & information.

Best wishes [& thanks]

Steve2

8

Thanks for that information Steve
I do hope your neurologist replies would be very interesting to know what he thinks
I presume he prescribed it

Are you still on your other meds as well?

My husband takes co-cardelopa and amantadine

He has swollen feet and struggles to get out of a chair

Good luck hope your progress continues

9

Good evening KK1 … I met Dr G about 6 months ago due to a lost referral from
3 years ago. Within a matter of weeks I had a DATscan [positive for Parkinson’s], and a Brain MRI scan [clear for my age] all on the NHS. He told me I had Atypical Parkinson’s & that in his opinion Parkinson’s drugs would not work for me. But he said I could try if I wanted. So I tried Madopar first, then Ropinirole. Neither worked & I stopped taking both.

On my third visit to see him I told him that my right foot & ankle had swollen for no reason & that there was an ulcer on my right heel. He examined me & said he thought I also had Peripheral Neuropathy & prescribed Amitriptyline. Without my foot swelling I would not have been prescribed the Amitriptyline. I have also been referred to a specialist for tests in Brighton.

I was taking Ibuprofen for Arthritis & Felodipine for high blood pressure. I stopped taking both when I started taking Amitriptyline. So I just take 1 x 10mg Amitriptyline pill a day.

You might mention these pills to your husband’s Neurologist. It might be that like me he has two diseases.

I am very pleased with the results I have had. I have had an email to say he wants me to carry on taking the pill. I don’t know if it is a forever pill [I hope it is].

Steve2

10

Hi Steve
Thanks again for all the information

Was your Day sca 3 years or 3 months ago please as you mentioned both

Also am I to understand that you are not taking any drugs for your Parkinson’s now?
Really interested in what you have to say
Thank you and very best wishes
Kay

11

Hello Kay … The DATscan was about 3-4 months ago from memory. The referral to see a Neurologist was from 3 years ago but got lost somewhere in the NHS to do system.
I had moved into a new area. Shropshire to Sussex.

I did take Madopar [for Parkinson’s] but my brain felt very hot so I was told to stop. Then I took Ropinirole [for Parkinson’s] for about 10 days but it was not doing anything so the Neurologist told me to stop. I take no other Parkinson’s medication & I do not expect to take any unless I develop other symptoms.

To be clear I have ATYPICAL PARKINSON’s not the standard PARKINSON’s.

The only pill I am currently taking is the 1 x 10mg Amitriptyline pill. I have been told I will stay on this pill past the further 19 pills I have left from the original Neurologist’s prescription. He prescribed it rather than my GP. The repeats I will get from my GP. Strange how it is working so well for me.

Steve2

12

I’m having two teeth out on Wednesday & one of them is really difficult to get at.
Anyone think it might be “Parkinson’s” ? No point in my buying a lottery ticket at the moment is there.