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i need help to sort this out

#1

Ok DX 3 years ago with tremor only and been on carbidopa-levodopa 3 times aday 3x 25/100.
For the last 2-3 months wearing off and feel twitchy in my legs , tremor, anxiety levels sky high, sweating…ive been to see my neuro who says im doing great and dont need anymore drugs…nurse was going to give Rotogotine patches but i have said no to these as the side affects are horrendous,im confused as im nervous all the time and when i drink i x glass of wine the feeling in my legs…the twitching, tremoring …goes away but i dont and cannot keep on drinking wine.
Thats not supposed to happen !??
I hate the way i feel the now and my nurse thinks my anxiety needs to be lookied into…yes ok but that wont help my tremors !!!

Can i ask the Neuro that i want to be re-assesed ?
I only have tremor and no other symptoms,
please help…

cheers H

#2

Hi hazewell123,

It sounds like you’ve been going through a bit of a rough time lately, I’m really sorry to hear that. The forum members will surely be able to share some advice on this, but I also wanted to chip in :slight_smile:

Have you spoken with your nurse about being reassessed? There’s certainly no harm in asking for more information about what you’ve been experiencing. And if you would like to speak with someone one on one about the issues you are having, our helpline is available to you on 0808 800 0303. We have specialist Parkinson’s nurses who can give you advice on what might be the best plan of action for you. They are available from Monday-Friday: 9am-7pm, Saturday: 10am-2pm.

I hope this is helpful for you, and best wishes.

Min
Moderation Team.

#3

Hi Hartwell123’
I was feeling exactly how you are a couple of weeks ago . I was taking 4 a day co-cardeldopa 25/100 . My Pd nurse suggested 10mg rasagaline just one a day, as well as the co-cardeldopa and I saw a difference after a few days. We’re all different but I may be worth mentioning it. Hope you feel a bit better soon
Sue xx

#4

Hi Hazwell123,
I was diagnosed 7 years ago and like yourself my symptoms have primarily been confined to tremors.Initially I refused any medications but “gave in” after a couple of years as the tremors increased. my neurologist prescribed Co-careldopa which over time has been increased to 4x25/100 daily. I have never been aware of any benefits resulting from Co-careldopa. More recently my tremors have become difficult to cope with and I saw my neurologist to request the possibility of DBS. I am 84 today and I was told that DBS was a last resort after all suitable medications had been prescribed. Initially I tried Selegeline without any success. Following that I have been taking
Ropinirole 1x2 mg daily which, to my amazement and delight has given me immediate relief. I still have some tremors but no longer to the same degree as I was suffering before trying Ropinirole.

#5

thanx for the support, tried rasagiline and it gave me insomina…what chance i have got !!..yes i need reassesed

#6

That’s great stuff…I’m of to see my nurse the morn…yeah the tremor is annoying and twitching is really bad I just hope they sort me out xx I’ll.keep u posted x

#7

Belated happy birthday xx

#8

Thanks for the good wishes. I wish you well.

#9

Hi

I’m currently on 1 1/2 Co-careldopa and 1 0.18mg Pramipexole 4x a day. The amounts I have been taking have crept up to that since I started on Co-careldopa 18 months ago. Each time it is increased the effectiveness slowly diminishes over the next 6 months and my tremor and restlessness worsen again. I didn’t want to just keep increasing the dosage so we are about to try adding Entacapone, which inhibits the breakdown of dopamine, to see if that stabilises the situation.

My experience with my consultant and neuro nurse is that I have to be firm and set out what I am experiencing and press them for solutions before stating what I want to do. I appreciate that isn’t easy when your anxiety levels skyrocket but you have to take charge as much as you can, you are the only one who really knows how it feels for you.

Glad to know you are going back to see the nurse. Press for a solution. All the best.

#10

Thank you yes I seen her today and we have decided that no more meds required just a reshuffle and some anxiety classes …feeling a wee bit more positive again xx

#11

Hi Hazel123
Yes it sounds like you definitely need a dosage/ medication change. I was diagnosed in 2010 when I was 52 and had DBS op in 2017, before the op I was on 12 x sinemet plus 25mg/100mg carbidopa/levodopa and 1 x selegiline among other meds and I was going into overdrive movement wise & sweating profusely, it was weird because I knew I was doing it & could stop myself doing it but as soon as I stopped concentrating on stopping moving like a deranged idiot it would start again. I lost about 3 stone in a month because of this. Soon after the sinemet plus was reduced and the selegiline cut out all together I calmed down. The only sad thing was I put all my weight back on lol!

#12

Hi H,

In the last couple of months I have gone from suffering from acute anxiety (to the extent that my wife called the emergency mental health team at one point) to a state of (relative) calmness and have cut my consumption of Sinimet by about 2/3rds.
I was diagnosed 18 months ago and prescribed Sinimet straight away. At each subsequent consultation the neurologist would up my dosage a bit (that seemed to make no difference). 6 months ago I was on 5 x 12.5/50 mg a day and I noticed that my anxiety was creeping up and I had a little more shakiness in my right arm and leg. Around the end of February, my wife (who is diabetic) encouraged me to try the ketogenic diet with her. I went along with this to support her but also because I am aware that there are PD research teams (UCLH and elsewhere) trialling T2 diabetes drugs for PD with some success. There is a school of though that PD is connected to insulin resistance in the brain.
I didn’t honestly expect much to happen and the first couple of weeks were quite tough but then I noticed that my muscles began to relax and I could stretch, twist, bend etc much better than for years.
Initially excited but then my anxiety began to really ramp up and I started getting palpitations and difficulty getting to sleep. I started to drink in evenings to keep things under control. To cut a long story short I hit crisis point and had a revelation (helped by some research).
It appears that many people with PD are also deficient in other neurotransmitters (not just dopamine) particularly GABA (there is a recent paper from Harvard Medical school on this). Dopamine and GABA need to be kept in balance, I understand, and an imbalance can result in anxiety, depression and a host of unpleasant symptoms. Alcohol (and cannabis and valium)) promote GABA which maybe why it worked for me (and maybe you).
I am now on a tiny dose of valium (2mg per day) as prescribed by my GP who is very supportive of this and my dietary change and cut my Sinimet to 2 X 12.5/50 per day. I also take a supplement (L-Theanine) which is derived from green tea and also promotes GABA.
My anxiety levels dropped dramatically from the day I changed my medication and I am as well as I have been for quite a long while. As a bonus, I’ve lost weight, lower blood pressure and other minor ailments have cleared up. My wife. who was diagnosed with T2 diabetes about ten years ago, is now classed as “pre-diabetic” and has also cut her medication significantly.
This is just my story and I have no medical background but hope there may be something in it for you.

Best of luck
Francis

#13

Wearing off please belive me …still having problems …same issues kmow ome believing me

#14

Hi hazewell123,

I’m so sorry to hear that you’re still dealing with these issues, and you’re having trouble getting support. I sounds like you’re in a very upsetting situation at the moment.

Did you manage to get in touch with our Helpline? They’re available from Monday-Friday: 9am-7pm, Saturday:10am-2pm on 0808 800 0303. They are there not only for emotional support, but they can also offer you advice on how you might be able to find the support you need.

Take care, and best wishes,
Min
Moderation team.

#15

Hi gerard how are you doing …did u get the DBS

#16

Hi Hazewell 123
Good to hear from you. No, I haven’t yet had DBS. I’ve not seen my Neurologist for 12 months or more. He hasn’t sent for me and I haven’t pushed for an appointment. As I mentioned to you previously, I am approaching 85 and am in two minds as to whether I would now want to proceed and cope with DBS. Quite frankly, I am inwardly hoping I can see life through without going through the trauma of Brain Surgery. Around the time of our previous correspondence, I began taking Ropinirole and believe it gave me some relief from my tremors. I phrase it in that way as I am of the view that, to some extent, we slowly adjust and learn to live with tremors and convince ourselves they are not as bad. At the present time, anyway, I am coping and would not press for DBS if questioned on the subject. As I have posted elsewhere on the Forum, I am currently experiencing problems with the dreaded constipation. I have had surgery in the past for a hernia due to straining and have recently developed what is called a “Divaricated Recti” My bowel movements cause me immense problems and virtually dictate how I organise and run my life. Apart from that and, looking after my wife - who has MS - I am reasonably contented. Thanks for your interest and best wishes to you, Gerrard