Does anyone have a side effect of sinemet which produces morbid thoughts about death and dying? I am usually a rational person but cannot manage these over whelming thoughts of how I will die and what I have to do to prepare for my death. I have never felt like this before and feel I am not depressed. Any help would be appreciated as I am wasting my life constantly thinking like this.
Hi Farmer s wife
i must admit I feel like you, thinking about death a lot, but hadn t attributed it to medication . I take Madopar. I find doing something pleasurable which leaves no room for morbid thoughts is a good move. Anything that makes you feel good.
As you feel it s meds linked it might be worth talking to your PD nurse?
hope you get on top of it soon
Ditto that, I have been thinking about "putting my affairs in order" to make it easier for my daughter. Years ago when we discovered my bull terrier had renal failure I asked my vet "when do we put her down?" He replied "you'll know...when she's not having fun anymore"
It's never a bad thing to have things in order and an exit strategy but at 55 I really didn't think I'd be having little or no fun!
I really don't think the thoughts are caused by madopar or sinemet. I think they creep in once a chronic diagnosis has been made. My symptoms began at 15 and at 16 was told I had a 'degenerative disease of my system' ie, PD. That was over 30 years ago and from time to time I have considered death and how I would like to be in control etc. I think it is natural to feel like this, but try not to dwell on it because you need find something to enjoy each day!
Hi Sally, can I ask how old you were when you were given a definate diagnosis of PD? Most of my problems started when i was 18 which is 10 years ago, i was looked at then but i dont think they believed me, Im finally seeing a neuro tomorrow! Sorry you are feeling this way farmers wife, i know in my case ive wanted to die justcos accepting you will suffer your whole life can be too much sometimes, i havent been suicidal as such but wouldnt care if i got hit by a bus. I dont know about the meds and if they would cause this, take care though x
So in summing up - the diagnosis of PD with no cure is probably causing my dark thoughts not the drug. As to the advice to find something nice to think about; I do, but the thoughts overwhelm me that this pleasure is fleeting and pointless. I am wondering if my mother's sudden death last year left me with unfinished business and maybe that has cause PTS. You see we never got on and I was dumped in boarding school at 6 and most of my life I was aware that she did not relate to me on any grounds. Enough said - thank you for your posts. Carol
Hi farmers wife
We've heard a lot of people say that dealing with a Parkinson's diagnosis can sometimes cause these feelings.
We had a Q&A on depression on this forum. Whether or not you think this is what you're going through, there is advice and approaches there that could be helpful. Do take a look at http://bit.ly/1kmgNLn
I hope it helps,
That s very hard for you. Have you thought about talking it through with a counsellor?Might help you to sort out your feelings
It s not good for PD to have a lot of negative thoughts
Thinking of you and wishing you all the best
I think the shock of losing someone, even in more positive circumstances, can trigger thoughts about one's own mortality. It sounds like you do need to talk things through with someone. The fact that you've shared here makes me think this loss is playing on your mind. However, remember PD can cause low mood, due to the lack of dopamine, let alone the psychological implications. I take 20 mg citalopram every morning (this has been only for the last year) and this helps me to feel emotion. For about a year before I just felt nothing. I would say I wasn't depressed but I just didn't seem to have the capacity to look forward to doing enjoyable things. It was just like going through the motions!.
Re the other point, I was diagnosed at the age of 40, eight years ago now. I believed I had PD due to the age of the internet and a massive amount of worldwide research and reading on my part. My neurologist said my symptoms were Parkinson's-like but that it wasn't PD, even though my symptoms were pretty classic, eg. tremor in hands, spidery writing, dragging left leg, loss of balance, poor posture. I think I was just a fraction ahead of my time, there were so few documented cases of juvenile PD it just wasn't recognised and after that I slipped through the loop! However, I always put myself up for medical research and it was when I was 40 one discerning researcher said he though I did have PD and he applied for funding for me to have a DAT scan which proved conclusive.
I don't have any regrets about this lack of diagnosis, as it meant I didn't have sinemet until I was desperate and I was prescribed it 'as a shot in the dark' when I was 27 and just about to get married. My response to this drug was nothing short of a miracle! I now know that both my parents had faulty genes which didn't effect them, but produced me!
Thanks for sharing Sally, where did you find out about medical research? Ive looked into it before but didnt really get anywhere. Its crazy it took so long to diagnose you when they thought you had that kind of problem when you were 16! Im glad you finally got somewhere though, sorry to all of you that have struggled though x
I also noted my first PD symptoms at an early age. In 1983 at the age of 21 I started with back pain between my right shoulder blade and spine which slowly spread over the next 15 years affecting my lower back and neck. I saw countless physios etc but any success in helping alleviate the pain was short lived.
At the age of 35 the symptoms escalated and by the age of 40 my right side was gone, walking with a limp, non swinging arm etc all the classic symptoms of pd. At this point I went to see a physio through my GP and this led to my diagnosis of PD.
When I was prescribed Mirapexin the back pain disappeared and for the first time in 20 years I was able to sleep on my right side without discomfort. Because of this I have associated my early back problems with PD.
i would be grateful if you could tell me:
How did the symptoms first manifest with you and did you receive treatment at 16?
What happened to the symptoms and how were you treated between 16 and 27 and 27 and 27 and 40?
Sorry to quiz you but I'm very interested in how PD develops and you seem to be comparable to my own situation.
with regard to morbid thoughts; no i havent had any. flat moods yes and vivid dreams
Im interested like you Leyther in early onset PD. It would be a dream for me to have a moment like you did and be given medication and feel like a miracle had happened! It would be amazing
My first symptoms were dragging leg, tremor in hands, spidery writing and slight loss of balance. I had no treatment when I first saw neurologist, because I was told it was a degenerative disease of my nervous system and basically get on with it! Sounds harsh, but it did me OK because I just soldiered on. However, it stole all my career aspirations so I settled for receptionist work (once someone finally agreed to give me a go!). That was tough both physically and psychologically - it wasn't stimulating and I had to work so hard to try and appear 'normal'' - thankfully I managed to type reasonably quickly, although I could hardly write! Socially and out and about in general people often assumed I was drunk!
I met my husband when I was 21 and we were due to get married in 1993 when I was 27. My health then was poor and I had arranged to be seated at the altar, rather than try and get down the aisle. Anyway, saw my neuro a few months before and for the first time I told him I was fed up, it was difficult to maintain a positive outlook as everything was just so hard. Then he said he'd try me on sinemet as a 'shot in the dark' because although I presented like a PD patient, I didn't have Parkinson's. I think I was just that bit ahead of my time and it was purely the age of onset that misled the medics.
My response to a little sinemet was nothing short of a miracle (I felt like I was a young teenager again). Back then I took a small dose 3 x daily. This went on OK for several years, although I had off times in between doses. This didn't worry me because I knew when I took that pill I would get that hit again and be able to function. I have always medicated with little and often. I never expected a perfect fix and I believed if I was to obtain longevity with this drug I would need to train my brain not to expect it. On the whole this worked - there have been times when I was prescribed higher doses, but these always triggered terrible dyskinesias. I've also tried DAs and other odds and sods along the way. The DAs turned me into a sex maniac so came off them (thankfully I realised this was the drug) - again a little ahead of all the press coverage and horror stories.
Now at almost 48, life is becoming increasingly tough, mostly due to wear and tear on my body. Chronic back pain and slight arthritis in right hip. Constipation and diet are a daily battle, however I have just omitted wheat from my diet and this has made a big difference. No laxitives for a month now! My speech is quiet but with effort I can make myself heard. Sinemet 7 x daily and a slow release at night. An anti-depressant in mornings to help me feel emotion. I didn't feel depressed as such I just didn't 'feel' happy or look forward to stuff but of course that's due to lack of dopamine.
Note: I got a correct diagnosis when I was 40! This was because I was involved in medical research. I had a DAT scan which was conclusive.
Hi sallyjt I noticed you were very young when dx, how are u doing ?
You really sound like me Sally! My symptoms started when I was 18, Ive only had the hand tremor constantly, clumsiness etc for about 4 months (Im 28 next week) Im intolerant to wheat as well which has been a pain in the bum cos I have allergies too which cuts even more out of my diet and I keep losing weight. I have a quiet voice too apparently, I dont have the strength sometimes to project my voice more! I have wear and tear on my spine as well, Im hoping it will be looked at again soon, I was told when I was 21 Id probably have arthritis by the time I was 30 and Im nearly there! So annoying when all this happens so early in life. Sorry things have been tougher lately, thats great you had such good results from the meds before though!
Thanks for that Sally very informative.
Re the hip problem check out the SI joint on google. ~Often this is overlooked and when displaced can alter walking gait causing hip /leg problems.
A simple manipulation of the hip joint by a physio with an exercise programme can improve this.
Oh thats interesting Leyther, that sounds like the problem and pain I have, and I do have a twisted pelvis and one leg a bit longer than the other so it could be causing me some trouble. I saw a physio at work with occupational health the other day and shes gonna work on my wonkiness so that would be good if it improves my back and hip pain! Thanks
Well, I did several things recently that have changed my attitude. Sold a piece of property and am enjoying lots of travel to exotic places and scuba diving in coral seas. Why shouldn't I enjoy the fruits of my labour while I still can? Yes, I made preparations, (Amazon sells body bags) but I don't see me using one for a long time yet, the helium option I think. I laughed when I saw the reviews one wag wrote "it has that new car smell". Best wishes.