Where do I go from here?


#1

Hi,

I was diagnosed when I was 58 in 2010. I was living in Scotland at the time running a business with my husband. It started with a slight tremor in my right hand whie we were on holiday abroad. After a spect scan it was diagnosed as PD, which was devastating. after a while I was started on Requip XL 2mg. which gradually increased to 18mg. I also began taking Sinemet, but was admitted to hospital with chest pain fearing a heart attack. It was thought the pain was a side effect of the Sinemet. I was swtched to Madopar 12.5/50 mg.When we left Scotland to move back to England in 2013, I was taking 9 Madopar per day, 18mg requip XL, and Domperidone for the sickness and dizziness.Within about 6 months the Madopar was increased to 10 per day and Requip XL to 24mg. Because my symptoms weren't improving, i was presribed Entacapone, then after that didn't work, Tolcapone.I'm still taking these 3 x 100mg per day. With short lived improvement I was trialled with Apomorphine injections, which just made my head feel like it was about to explode, so that was discontinued

i am currently, on the advice of the PD consultant, reducing the requip XL gradually to 12mg. I am at my wits end. Its a living hell, with freezing, painful leg muscles, little sleep, constant pain and discomfort. I'm an avid computer geek, love sewing and knitting, but I'm finding it more and more difficult to do any of these. No-one told me PD could be so painful. Sometimes I can,t lift my hand to feed myself.

I feel as if I'm rambling on, but what I would like to know is, is there anyone out there whose Parkinson's is controlled with their medication?

Thanks for the opportunity to vent my feelngs.


#2

Hello Lilac

Your in the right place to vent your feelings

Unfortunately i do know from personal experience just how painful pd can be  so fully sympathise with you , i was diagnosed in August 2013 at 47 yrs old although i can track my symptoms back about 4 or 5 years  they first started with a tremor in my left hand which my gp at the time put down to aneamia , then a couple of years ago i noticed a lot of stiffness and aching when i was getting out of bed and up from a chair my gp put it down to my thyroid   , i thought nothing of it until July last year when i developed a very painful left shoulder and a more pronounced tremor and a feeling as if i was shaking inside my body  so after another visit to my gp i was referred to a neurologist , all my gp said was she thought it could be something neurological  i said like what all she said was essential tremor but she was not convinced as i had a resting tremor no mention of parkinsons , i went home and searced the internet and all that came up was parkinsons and essential tremor my gp already ruled that out  pd was in the back of my mind when i saw the neurologist  but was still a shock when i heard it , just over 12 months on i take Madopar 125mg 5 times a day at 3 hourly intervals but just lately i have been finding i do not get the relief i used to get from the madopar and suffer aches and pains on a daily basis  and do struggle to move as my body is hurting so much , seeing my neurologist in December   there was talk of adding more medication in the form of  a DA ,  so yes pd can be very painful


#3

Hi, Lilac,

I am sorry you have been having such a rotten time with the medication you have been taking. And of course you ask where do you go from there.

Are you a bad case of not responding too well to medication? If that is the problem, what about asking your neurologist about Deep Brain Stimulation? Some people on here have had it done and they are very happy with the results. Gus will be able to tell you more about it, although I haven't seen him on here for a while

I wish you all the best and hope things will improve for you soon. Do take care.

 


#4

PS  I forgot to say that apparently not everyone is suited to Deep Brain Stimulation. I don't know what the criteria are to determine who is suitable and who isn't.

Regards.


#5

Hi Shelly65,

Thanks for your input. Are you taking anything for the pain? I've tried everything from Pregabalin, Gabapentin, Tramadol, which all gave me horrible side effects. I am currently taking paracetamol, Diclofenac and 2 codeine and Clonazepam before I go to bed.

Regards

Lilac


#6

Hello Redpoppy,

Thanks for you reply and kind words. I am in the process of being referred to Newcastle for an initial assessment for Deep Brain Stimulation. I'm not sure if I meet the criteria. I see my neurologist next week so maybe he'll have some answers for me.

Regards

 


#7

 

Hello Lilac

Have just been reading you posting from October!! I was actually diagnosed about the same time as you when I was 58 in 2011 (had symptoms in 2010). I put off taking meds till 2012 when I felt the need from them, I was prescribed Requip XL then it was changed to Ropinirole XL, I still now only take 12mg a day which seems to control my parkinsons to a certain extent. I tend to think (and this is my opinion) that if they mix the meds and start adding others thats when a lot of people start getting more problems, thats from what I have observed on the forum. But having said that parkinsons effects peaople in so many different ways, I hope they find something to solve your problems so you can get some respite from what you are experiencing.

 

Regards Sheffy


#8

Constant pain, a curse that no one told me about. I was diagnosed in 2005 and although I'm a tad overweight I've always been reasonably fit and mobile, until about 18 months ago when my lower back started giving me gip. Initially my left leg played me up and I was told the my sciatic nerve on that leg was damaged, which made life miserable but tolerable. Early this year I visited my GP to get advise about the constant back pain, I was sent to the Musco skeletal department of my local hostipal where I was given exercises to do, then as this hadn't improved things I was then sent to tai chi classes, although entertains the exercises actually gave me more pain. Acupuncture and massaging gave me temporary respite but the pan only reduced and didn't disappear. Apparently my lower spine has nodules protruding which are slowly pressing on the spinal nerves and as these grow so they will increase the pressure on the spinal nerves. In September this year I flew to Turkey on hodilay, enduring a 4 hour flight, during the flight my right leg started aching then a further 4 hours spent on a coach to the resort made my right leg spasm and since then I am in constant agony. Paracetamol and codeine give slight relief for a short while, Oromorph resulted in constipation. I can only assume that until the nodules are removed my pain will only increase and I will be reliant on a mobility scooter to get around. I apologise for my rant but thought I'd share my load and perhaps lighten yours too. 

Now the list of medication is extensive, I started taking 3mgs Ripinirole 3x/day in 2005, now I take

12mgs requip XL, 437.5mgs Madopar, 100mgs Symmetrel Amantadine, 1mg Rasagiline for breakfast

437.5mgs Madopar, 100mgs Symmetrel Amantadine for lunch

375mgs madopar, 300mgs gabapentin for tea

200mgs madopar CR, 300mgs gabapentin for supper

plus of course paracetamol and codeine 4times per day

I'm still active though and organise my support group meeting each month and refuse to let PD run my life

 


#9

Hi all. Just joined the forum in the hope of support and understanding. Hopefully save my family abit. I was diagnosed last october 2013. Its quite a shock and learning curve this pd. I found requipxl brillant for improving motor skills and cognotive skills, but it felt relentless and made me abit manic and stressful. Im on neupro patchs now which calm me and make me peaceful but my motor skills and cognotive skills and pain are worse. I need abit of both i think. Pain is deffinately increasing as is stiffness and confidence decreasing. It feels at times that pd is progressing too quick but on a good im feeling good. Its a complicated buisness.

Im a mum of 4 , 2 grown up the youngest is 5. I was 51 when diagnosed but had been with the sence of smell for 9yrs and several other symptoms for about 4/5 yrs. 

Best wishes sunnybear


#10

Hello Sheffy,

I've not been on the forum lately, too shaky to type, so I've just read your post. I agree with you about adding more to the melting pot of medication. Does it help? Since my first post I've seen the consultant who has now started me on 1mg Azilect ( Rasagaline) and instead of decreasing the Requip XL to 12mg, I am now increasing back to 20mg daily. I'm still taking Tolcopone, which seems to make things worse. I know everyone with PD is different but surely there's something out there that can help more than this guessing game!

Thanks for your input and I wish you well.

Regards Lilac


#11

Hello and thank you for your post. I'm really sorry to hear of your back problem. I've read a few posts with fellow sufferers having back pain, amongst others. I've already had 3 steroid injections in my spine to help with sciatica and low back pain, and I'm booked in for another 4 in a few weeks. I had sedation which wasn't too bad, in fact I had a smile on my face for a while afterwards, which made a nice change for my husband!!!

Good luck

Lilac


#12

 

Hi Lilac

No idea if the extra meds help, as I said I'm still only on the one medication at the moment, and i'm doing ok at the moment (touch wood!) but I know when it is wearing off or if I need to increase the dosage.

Regards

Sheffy


#13

Hi Sunnybear,

Having just joined the forum myself, I've found it great as a sounding board and you hear from nice people too. Strange about the sense of smell, mine has never been that great. It must be hard bringing up a family with PD. I'm lucky there's just my husband and I, and he does almost everything that I can't. 

There must be hope for us all. A cure round the corner? Wouldn't that be nice?

Regards Lilac


#14

hi redpoppy im still here my hand as been playing me up ,,also found out what the pain was in my shoulder have two trapped tendons hopefully it will heal in time been 5months now if no better in another 5months may need small opp  ! .hello lilac when you was on sinemet & went to hospital ie heart attack was your blood  presure really high ! if so i would give sinemet another go ,& watch bp maybe bp tablets needed aswell ,im not a gp or anything but similer happen to me ! .need any info on dbs more than happy to help  & welcome, also have you tried amityripline helps nerve pain also sleep !


#15

Hi, Gus,

Yes. I had noticed you  were back on the Forum after a short absence. Sorry to hear about the problem with the trapped tendons. I do hope they'll heal soon.

Hi, Lilac,  there are people who respond well to medication,  J of Grey Cottage for example, who is doing excellently after 17 years of living with PD, but others do not. Unfortunately I too seem to belong to the latter category.

I first tried Rasagiline, but I had problems with my sky-high blood pressure, so I had to stop taking it. About a month or so ago I started on Ropinirole XL, but I might have to stop that too, as I hate all the side effects, especially the giddiness, the feeling of indigestion, the abdominal pain and the fluctuating heart rate. Apparently I shouldn't really be on Ropinirole because of my heart problems ( a murmur and 2 leaky valves !). I didn't know that before I started taking this medication.

I have concluded that the side effects of the medication are worse than my Parkinson's symptoms, which are mainly tremor related. I wish they would hurry up to find a cure !!

Take care.


#16

hi redpoppy,good to hear from you !have you tried clicking on research at top of page great news


#17

Hi lilac. A cure or something to stop this would be great. How long have you had pd. I feel as though my pd is rather progressive. Many people seem to stay the same for years where as i seem to gain a new symptom monthly. Maybe it is just like that the first year because in become more aware after diagnosis. What do you think. Feel warn out tonight been away this weekend. Best wishes sunniebear.

 

 


#18

Hi, Gus,

Thank you for pointing out the news about a breakthrough in stem-cells research in Sweden.

Unfortunately, any trials on humans will not start until 2017 and God knows how many more years will pass before a cure is offered to people like us.

Also, is there going to be a stampede to get the cure first? Will the NHS shoulder the cost? After all, there are already 127.000 of us in this country and every hour someone new is diagnosed. Are they going to give priority to newly diagnosed sufferers? What about older people with Parkinson's, since this is perhaps the only country in the world where old age is not respected and old people are considered a burden on society?

So many questions......

Take care


#19

hi redpoppy,  i know this might sound bad but if theres hope for younger pd suffers this has got to be good,as i myself feels like i have been robbed  of my golden years ie upto the age 55 ! well i did plat quite hard mine you cool


#20

play not plat ....