I'd like to know the experience others have had about DBS surgery. I'll have it these year and I'm really concerned about results , new developments or side effects after the operation.
It would be grate if there are someone whom want to share the experience from UK
Hello there...I had this surgery dec2012. And am glad I did though was not quite As I expected !
i have had dbs for just over three years its gave me my life back no more tremors,dyskinesia it took a while to get settings right & meds but great now going in for 1st battery change 26th may a good reboot !
hello to everybody..i am due to have my DBS reinserted after having it removed after 6 months of having it inserted due to infection first time around. I am upbeat about it as
1. I cannot be that unlucky twice ? Can i ?
2. I will be under sedation for the whole procedure and have the battery reinserted at the same time
Just curious to know if anyone else on here has been in the same predicament ?
I am 46 and was diagnosed in 2003. Enjoy dog walking, cricket, record collecting cycling eating out and i am a family man with 3 kids
As an alternative
Is there anyone out there who is contemplating DBS and wondering if it is necessary for them and want to explore how they take their meds etc
Hi Leyther
I'm getting to the stage you are describing now.
best wishes
Casie
Me too. Just waiting for my op date as have just had final pre-op assessment (including MRI scan).
Apart from Rytary (or equivalent) if it ever gets released over here - what's the alternative?
Hi Gaz and Casie
First some background on me.
First proper signs of PD 1997 aged 35. Carried on regardless for 6 years until dx at 40.
Drugs:
Mirapexin since 2004 now on 1.05mg CR peaked at 12 x 0.7mg in 2006 (8.4mg) until 2009 when reduced due to behavioural issues. Max dose 3.14mg so yes i was overdosed.
Selegeline 0.1,g since 2005
Sinemet Plus started in 2006 3 x 125 mg then entacapnone added then the combined drug Stalevo.
Currently 5 x 150 mg Stalevo since 2012.
Movement when on is very good not obvious that I have pd.
Do wear off but can manage the problems reasonably well
Anxiety, lack of motivation, short term memory loss etc do occur but manageable.
Tremor only when stressed.
No dyskinesia.
Would you both post your current drugs taken and the times you take them.for comparison please.
We can then compare them with mine and how I manage my pd and see what the differences are and you can draw your own conclusions
L
Sorry, Leyther, only just spotted your post!
I, too, was on Mirapexin originally but was taken over by obsessive disorders (gambling & hyper-sexuality).
If working, my daily intake is as follows:-
6.15.a.m. Rasagaline (1 mg x half) I'm cutting down on this again as my evening bouts of dyskenisia (left leg only) have been driving my wife mad;
Stalevo (150/37.5/200)
Amantadine (100mg)
Madopar (100mg dispersible)
7.00.a.m. Mirtazapine (15mg)
9.15.a.m. Stalevo 150
12.00 Stalevo 150
14.45 Stalevo 150
17.45 Stalevo 150
20.30 Stalevo 150
Then, if it kicks in ok, I'll wait until 11.30 and maybe have another one then (Stalevo 150) or, if in bed, don't bother.
If not kicked in, I'll have another Madopar between 21.30 and 22.00 depending on how panicky I feel!
23.45 Mirtazapine (15mg)
At weekends all as above but 2-3 hours later depending on how long I can stay in bed after a fairly sleepless week (4-5 hours nightly).
There, I think that covers it!!
Regards
Gary.
Leyther, following in from above, mostly during the day when I am working, I don't seem to suffer any "off" periods - I am back laying bricks all day (through necessity) which is proving to be the best remedy for me physically. This after a self-imposed absence from site due to losing all my confidence and burying myself in a lonely, remote office whilst still trying to run a building company and watching any profits we had saved (not to mention my fitness) dwindle slowly away.
During the evening I do tend to sit & watch a lot of t.v. which is probably not conducive to keeping the dreaded Mr Parky at bay. Then, almost without fail, every evening between 9 and 10 p.m., when I am at my lowest ebb, the freezing starts (and with it anxiety and black feelings) and I struggle to be able to do anything that involves walking. If I feel I can cope with it, I try & get through it but other times I just have to have that extra Madopar.
The strange thing is (as I believe is true with a lot of pwp's) after that I am fine again right up to 1 or 2 in the morning.
Just don't mention the nights......!!
But I find it so difficult to plan anything sociably for the evening because I never know what I'm going to be like. I have frozen in a couple of public places & found it very distressing.
1 Like
Hi Gaz
I see you have dispersible Madopar.
They are great as a rescue remedy if you freeze when out. Just remember to carry a hip flask with water to swig it with!
And crunch it!
Works in a few minutes.
Good luck!
GG
Hi GG
Yep, I always have a small bottle of water with me just in case.
As you say, I crunch it with my teeth and wash it down, but sometimes can take half-hour to kick-in....sometimes (very rarely) nothing happens!!
That's when I really panic!!
Gary G
Gaz
First give yourself a huge pat on the back.
If you are running a business and laying bricks then you are successfully managing your pd
Well done!
Most drug regimes tend to ignore the later hours of the day as we are expected to sleep though this period so could be why you are wearing off.
I have never used Madopar dispersible so cant comment from experience. My comment is to beware overuse if it causes dyskinesia as I know of several more advanced cases that have been affected. Dyskinesia is a side effect so can be reversed.
Here's what I do:
I find that to start the day I need 2 doses of sinemet taken at approx 7am and 9.30. I tend to think of dopamine like insulin ie its necessity is based on activity inc. thought sometimes!
If I get up early to go fishing I will take a pill at say 5pm to work by 6am. When taken early I find that the need for my subsequent pills even out during the day. I have approximate pill times if i am wearing off within a hour of my next pill time I take a pill early. I find that waiting causes a deficit; like running out of fuel in a car makes the car harder to restart so I keep the tank topped up.
I find the best way to take levodopa in my case sinemet or stalevo is;
plenty water or better still with fizzy pop as well and followed by something sweet eg a banana, biscuit, mars bar etc. this i believe gets the pill into the duodenum where it is absorbed along with sugars.
A banana etc often works if the sinemet doesnt appear to be kicking in particularly on an empty stomach. On a full stomach caffeine in the form of a strong coffee with sugar or a cheap caffeine drink work well.
Bananas and coffee replace madopar dispersible for me.
This is not a mad idea I had, I was told about this sometime ago by fellow pwp and have discussed it with my neuro who already knew about it. The coffee I believe works because it encourages gastric emptying, hence why a coffee is offered in a restaurant, therefore getting the drug to the duodenum. All I have done is refined it to suit my lifestyle.
If the banana coffee trick doesnt work I find there is usually a reason for this such as:
Constipation
Lack of sleep or overtired
An underlying illness that has not shown eg a cold
Stress
Anything that affects the gut, dont forget the pd gut is slower than normal.
Taking all the above into account if after 2 hours my pill hasn't kicked in I assume that it hasnt worked, probably due to stress exacerbated by the need for it to start working and I take another. My choice.
Since I have adopted this strategy I have not increased my pills from 5 stalevo since 2012 and even then the extra 5th stalevo was part of the necessity to replace the withdrawal of mirapexin.
Other things that help;
Rest when you need it
Dont try to do an activity when worn off, drink coffee and put feet up; once you are back on you will sort things out in 2 mins.
Be realistic. You have got PD it isnt going away
BUT
if you accept the changes it makes to you you can find a way to overcome the problems.
THERE IS ALWAYS A WAY.
Have a contingency plan if you wear off eg:
Always take a trolley into a supermarket; it doubles as a zimmer
If you are in difficulty always have back up you can ring for help.
You are the most important thing; if I go fishing and cant get my tackle back to the car I hide it and come back later for it. Tackle I can buy again.....
i believe if I had adopted this strategy earlier I may have realised that the wearing off of pills could be due to several factors and that by waiting and investigating I have found the answer and have got back to "normal"
Dont be afraid to explain your pd when necessary and ask for help when needed.
I have never had a negative response to asking for help.
That's the way I do it .
Hope it helps somebody.
Regards
Leyther
hi leyther, i sure your wrong on eating bananas with sinemet as they contain potassium ,when i was getting tested for dbs they want to see how bad you are with no sinemet in your system the night before they take you off meds & in the morning they get you to eat 3-4 bananas to eat the rest of the sinemet up !
Hi Leyther
Thanks for all those tips and words of advice - I will try to adopt them in my regime to see if anything improves.
I always thought Stalevo worked more effectively on an empty stomach which is one of the reasons why I struggle in the evening after a fairly substantial dinner. I had noticed that I sometimes craved a coffee and felt better after - it's amazing how your own body tells you what it needs sometimes! This confuses me a bit, though, as I thought coffee was a diuretic which can make you dehydrated - and I often feel dehydrated (especially in the evening) so I try to avoid it!!
I am always worried that I don't drink enough but then I worry that if I drink more, I will need the loo more - it's such a vicious circle.
You say that you only ever have 5 Stalevo in any one day - so what time do you take your first one - or does the Sinemet you take in the morning do the same job? If so, why not just take Sinemet (or Stalevo) all day?
Also, you don't mention whether you are going to have (or have had) DBS - what are your thoughts on that? I am currently waiting confirmation of mine sometime in June.
What's your response to Gus's comments? I know he has had DBS and it has proved very successful for him - so I always take heed of his sound bits of advice.
Sorry about the Spanish Inquisition-like tone of this post, but there are so many things I want to know - all in the hope of dealing positively with Mr P.
Many thanks
Gaz
Gus
Thanks re bananas; there is a couple of papers re levodopa degrading due to banana juice so will replace with another fruit or a biscuit. Empty stomach does work i just find small sweet snack and / or fizzy pop help also can be good if u feel sick when taking tabs.
Gaz
I notice you have a problem with leg movement at night and you did take mirapexin but now dont,
It doesnt sound like dyskinesia to me more like restless leg.
When i reduced my mirapexin in 2010 I tried to come off to quick ended up with restless irritablity at night. I believe that das do actually give restless leg as well as being a remedy. pwp i know who taken off it have had same problems.
The differece is i stayed on mirapexin and take a 1.05 cr dose which stops the irratible feeling.
The dyskinesia i seen occurs on over 150mg doses of levodopa and occurs all day not just at night.
Worth asking neuro to try a small dose of mirapexin to see if it makes a difference.
Amantadine I would advise you read up on and draw your own conlusions.
Azilect is ok at 1mg but should be halved when levodopa introduced also azilect and selegeline are better taken with food. Both can have adverse affects with anti depressants
Read up on your pills the US site drugs.com has patient and professional advice which you can discuss with your neuro.
Dont dosage change without consulting your neuro but timing you will need to sort out.
Your stomach is replicated by a test tube during trials of drugs however each one of us has a unique digestive system so we need to adjust our regimes to suit. Ive seen pwp eat a plate of offal for brekki, I know of pwp who take sinemet with milk. The gut is key; look after it and you will be better for longer
DBS
I manage my drugs and have a lifestyle im happy with and no dyskinesia.
Since DBS often leads to a reduced drug regime, I often wonder if pwp on excess of 150mg doses of ldopa pre op would have benefited from reducing the doses instead..
DBS has pros and cons that are well documented. It seems to be the in thing currently however I feel more could be done by working with successful patients to compare with the ones having problems.
Thats my opinion and I personally intend to investigate the alternatives before considering DBS.
ps running out of edit time will post re stalevo regime later
Gaz
Stalevo
in winter i tend to have first pill 7am then 9am 1pm 5pm 8pm
times are a rough guide i tend to go off how i feel
ie if i feel the drugs wearing off say at 12 noon I dont wait till 1pm
If I get to 1pm and feel good I take the pill at 1pm
In summer if Im fishing I take the pill when i get up and wait till i feel first signs of wearing off before next pill.
this seems to even out through the day
wearing off seems to be varied through the day.
I f I am going somewhere like a concert where I may be out late I take an extra pill.
I tend to sleep 4 -5 hours so 20 hour days.
i have taken 7 tablets in a day and had amazing effects ie was out till 4am walked a mile home and slept well.
I dont recommend it as a regular thing to do but it did make me think about larger doses and the problems associated with them; usually dyskinesia.
I think more research is necessary on levadopa and how to take it.
I asked my pd nurse about dyskinesia and did she see many pwps with it. She said extreme cases had become rare and there was a decline which is good news. I mentioned I had observed it in pwp taking single doses in excess of 150mg or those taking less doses but where there was a nett increase in entacapone. She said they only measured total dose not single doses.
A classic case was a regime of 2x100mg sinemet + 200mg entacapone taken 3 x daily which caused dyskinesia.
To remedy the dyskinesia
100mg sinemet + 200mg entacapone x 6 daily
this was equally as bad probably due to the entacapone boost being doubled .
Also proper titration should be done slowly; according to manufacturers leaflet until patient sees the benefits. This can be key with pwp with above average body mass who may need more than just 3 sinemet a day.
Too many pwp are just given 3 sinemet a day to take without any reference on how to take them, what with and what foods.
Often they are left without follow up to check progress.
Levodopa taken without regard to timings and without regard to the need to have an efficient gut, proper rest, avoiding stress etc is useless. Before you know it the pwp is prescribed bigger doses with additional drugs that dont give much help and often cause more problems.
What annoys me is that what I know has been self taught but is known to the neuros when i discuss it at clinic. Not enough emphasis is put on managing our drugs; we have become self treating patients out of necessity, the only alternative being to add more medication and/or have a brain operation.
Thats my opinion based on my experiences of taking pd drugs for 12 years (9 years sinemet) and those of other pwp that Ive met.
Whatever the situation I hope that all pwp find the best way for them to combat this debilitating illness and I would encourage all people to post their ideas as well as their problems with a view to improving all our lives
regards
Leyther
As an afterthought
Writing this is a pain and trying to absorb it all difficult.
Maybe we could resurrect the google hangout for discussion or even instigate the PUK to run patient "workshops" with a neuro in attendance.
Hi Leyther,
I will pass along your idea and get back to you.
Alethea