I get very ill if I forget to take my Sinemet Plus (carbidopa/levodopa)
 

Hi, I am a 17 year old girl with Dopa-Responsive Dystonia. I take 3 Sinemet Plus pills a day. However, I am VERY forgetful at taking my medication :( If I forget to take 1 I'm OK (I accidentally do this very often). If I forget to take all 3 or 2 of them I just VERY bad muscle cramps and contractions mostly in my back (I also have Clonus and Scoliosis), very shaky, headache and can't concentrate or walk properly. I am bed bound if I forget to take them. Why does this happen is it the sudden (accidental) withdrawal?

The reason I forget is because I'm out and don't take my medication with me or I forget to take it when I stay at a friends or I geniunly just forget it! I'm a teenage girl and I've only been diagnosed for 5 months so it's new to me, its hard to cope with sometimes!

I'm wondering if there is a solution to this problem? Like a surgical pump that delivers your medication for you or something along the lines of this? I find it very hard to remember and I have organised pill pots with Morning, Noon, Evening and Bed sections one for each day of the week but I'm still failing to remember. Does anyone have anything they could suggest to help me out :/? Thanks!

Hi Greeneyes, please ignore my other post. I see now you are taking the sinemet for distonia. I'm not sure if I can mention a specific chemists but Lloyds chemists have an online catalogue in which there is a small pillbox Tabtime4 where you can set the alarm for 4 times day. If you go into one of the the branches I'm sure they will look it up for you. There are all sorts of multi-alarms and vibrating alarms and watches on the net but personally I dont like spending money on things I can't look at first. It is important that you try and take the tablets at regular intervals so your body can settle down so to speak. I would hope that your specialist could take time to answer your queries - keep a note of them. Its not just teenagers or the elderly that have trouble remembering to take their tablets or the leaflets with them wouldn't have to tell you what to do if you forget.

Best Wishes

Dear Greeneyes
 

I bought a 4 alarm pill reminder at a discount store and it works great, we do what we have to do ....I forgot my med's a few times and wished I hadn't.
Your young, brave, and believe me there are so many things you have to look forward too.
In my lifetime I've seen so much medical technology breakthroughs, miracles medications, you are going to be just fine.
I have a grandaughter who was born with so many disorders I will not begin to name them all but I know that the body can often times find a way to heal itself, even against all odds. In her case she was never to walk, talk, grow, even see. The optic nerves are not connected in her brain, but her brain found it's own way around that and she see's just fine. Another thing, she's missing her growth hormone, they wanted to start the painful injections everday when she was two years old but my daughter didn't think she could inflect that kind of pain and she knew her daughter wouldn't understand why this was being done to her, so no growth hormones. Well about three years old she started growing a little and each year she has grown more. No she is not the size she should be for her age, but her little body is finding ways around her deficencys. There
is always hope....my prayers are with you...Silver

Hi Greeneyes,
The reason you are getting a sudden downwards bump when you forget to take your meds is because levodopa has a very short half life in the body, unlike most medication that taper down slowly. The best way to deal with this is make sure you take it on time. Do talk to your neuro about this, and also ask him/her whether it is possible to take a lower dose at shorter intervals. There is a half size sinemet tablet 62.5. This might give a smoother delivery. Dividing doses has been helpful for some parkinson patients.

The other thing you can do is always have some meds on you so you can take some when your body reminds you that you need it. Just remember not to take more than you are prescribed. If you don't want to use a pill dispenser, other options are a wrist watch with alarms settings, or maybe an app for your mobie to remind you.

There is a treatment called duodopa that consists of a device that drip feeds levodopa in a gel form into the gut. It is currently a very expensive treatment and used for people in later stages of parkinson, and I haven't heard of it being used for DRD. As it is quite an intrusive device it usually isn't given till all other options have been explored.

Good luck and keep us posted on how you are getting on. :)

You might want to try a keyring pill holder. Even better if you drive because you can't go anywhere without them. I got mine from: www.medicalarm.co.uk

Manufacturer's description:

Pill container available as key fob or pendant .

The pill container is a strong chrome waterproof capsule with screw lid.

It is 50mm long by 14mm in diameter and holds up to 12 tablets.

An old trick that might help is to take a full day's worth of plain sinemet tablets (not time release), crush them, and dissolve the lot into a bottle of water which you sip on through the day. I have not tried it myself but it should give you maximum control. Your needs probably fluctuate some through the day.

I have a small pill box that I keep in my pocket and a watch that you can set for 5 alarms. I keep a tiny water bottle in my purse so I always have water to take a pill with. The water bottle is one that they sell to put lotion or other toiletries in for travel, but it is a good size to put in a purse and it holds enough water for taking a pill. I have dystonia with my PD and my toes curl up and my neck gets stiff any time I am late taking my sinemet.

Hi Chicory. I hit on the same type of bottle as you - mine's 100ml and so you can also put with your permitted liquids when travelling through security at airports.

I'm currently taking l-dopa for cervical dystonia. I got so sick also when I first started taking it. I bought a pill cutter and cut it up into quarters and took 4 times a day until could get full dose of 3 tablets daily built up. I increased by a quarter when my system could handle more. It took a little time, but I am now on my full dose. I did do this with my Dr's approval. I do get sick if I miss a dose by longer than a hour so I have set alarms on my phone to remind me of my next dose.

Wishing you the best.