[Jim091866]

It's hard enough even with the use of a timer, the alarm on my cell phone, etc to stick to a very timely schedule with your meds.. I can be off whether it be first thing in the morning or especially if I am late with a dose. I then take my meds which in my case I get results in about 30 mins. ( I try to take my meds on an empty stomach or else at least an hour from my mealtimes. But on occasion that 30 or even 45 mins go by and I still don't feel relief. I then take another half tablet and within 5-10 mins I am on, soon to be followed by bouncing off walls and head bobbing with dyskinesia. Then I try and wait it out not knowing when I should take another dose, how much to take, you get it. I know that the biggest part here is the regular timing of the dosage. I am never much more than 20 mins or so if I am late, if ever. most of the time I am right on but at times it happens. ie. I shut off the alarm thinking to take a pill and get sidetracked. I am at a loss as to what to do. I have had DBS. I cannot get the dosage down from PRIOR to my DBS that being 2 tablets of 25/100 every three hours and am now being seen by a third neurologist who seems to think that I have psychosomatic PD, WTF?? Any suggestions, I am open to anything, heck I've already been told by this guy that my PD symptoms are in my mind. Can you believe this? This is a great gig I've got goin' here, cant pay your bills, can't drive, get to take all these meds, been to the ER or in the hospital more this year than I ever have in my life. Not to mention the stress on my marriage, loss of my career, I could go on and on but you guys know what I'm talking about. I just want a little break. Tommorrow is another day that is centered on what time did I take my meds, when is the next one due, how am I doing-too little/too much. Hell, I can't count on being able to walk the damn dog I get so bad that I am about to fall due to being too off and my feet are shuffling or I'm bouncing all over the place. What is most depressing is that I am not getting much help here from the docs and this 3rd guy is a MDS!! At the end of my rope. Anyway thanks.

[reverett123]

If I had the answer, I darned sure wouldn't be hanging around here. But I will offer some friendly advice. It may or may not be good advice. I am just a lowly patient, after all.

First, and hardest, is you have to change your relationship with everything. You have to aim for being some kind of monkor priest or something. The reason is the stress of life. Ideally, there would be a sanctuary of some kind where we could retreat and have no worries. Ain't gonna happen, so we have to do it ourselves. Read up on meditation, self hypnosis, exercise, etc. All will move you in that direction. Your doc will offer pills. Don't take them if at all possible. One more drug is all you need.

Second, and in contradiction of that last sentence, use common sense but try everything. We have a designer disease. Each is different and nobody knows what will work for you.

Third, be suspicious of your meds. If you read the inserts you will find that the symptoms of a little too much is very similar to those of a little too little.

Fourth, find something you enjoy. Dopamine is the feel-good chemical. But it doen't just show up when you have accomplished something. It shows up in anticipation of accomplishing something - that's why gambling is so dangerous. But if you are doing something you enjoy, you are pumping out dopamine.

I don't know if that helps or not.

[Jaye]

Hi, Jim

Rick and I are friends, and I respect his views and strategies, but we are just about opposite when it comes to our views on traditional medical care.

I tend to trust medicine while keeping control over my own care and watching for their mistakes, so I can work things out when I consult my docs.

Doctors are a little jumpy about drug dependence or abuse. I have known one PWP who abused Sinemet, and I can see why they're careful.

Even an MDS may have only 15 minutes allowed by the hospital or clilnic to see you. The more concise and scientifically you use the time, the better chance the doc has to make the visit fruitful. (This is for general knowledge for anyone reading, not just you, Jim.)

You are the person who is ultimately responsible for your care, so if I may, I'll describe what I have had to learn that you might find useful. I've had to:

• Find a schedule and stick to it.
• Get tough about the schedule. I have nine alarms set on my iPhone for doses of different meds throughout the day, and keep the meds with the phone.
• Write down when and what I take for a week whenever I have a new med or a change in dosage or--most challenging--any of my docs are having a hard time picturing what I'm going through. Adding a note about how I feel and what my mood is at those times gives me a nice little chart that helps docs focus.
• Count out the pills ahead of time. I got one of those crafts trays with 14 compartments, but I used to use jar lids that I saved, and I count out the meds for each day and put them in small plastic boxes that I bought for the purpose. I only have to do it once every two weeks, but if I forget what I've taken (not unusual after about 10,000 pills), all I have to do is glance in today's meds box and see what's left.
• Wait an hour for Sinemet to work. Sometimes an extra half glass of water after 15 minutes will speed up the process. Sometimes an empty stomach is too empty, so I'll take a bit of a cracker to get the digestion going and send the meds along to the gut, where they are absorbed.
• Stay well hydrated. Seriously, 6-8 glasses of water a day works for me.
• Move. A little gentle walking around or a few seated biceps curls will do wonders for my absorption.
• Get warm. A warm bath or a warm cup of tea will often kick in that morning dose for me.

I'm wondering, if you've had a DBS, why are your motor fluctuations so severe? Has anyone x-rayed or MRI'd to see if your leads are in the right place? I ask this because some of my friends have discovered that problem recently. And I don't know much about DBS.
As Rick said, everybody's different--it's a designer disease
...with off-the-rack treatments (and I said that).
Best of luck. Keep us informed, okay?

Jaye

[jcitron]

Jim,

I'm new to this road, but I understand your frustration. I take only a handful of medications now, but I count them out each morning for the entire day. I have one of those little metal canisters that I keep in my pocket along with my nail clippers. I keep any eye on the clock since I'm on an every 3-hour schedule until bedtime.

I know how many I'm supposed to take and at what time. When the pills are gone, it's time for bed. The seperate container also helps me to remember if I took a pills or pill, or even worse got side-tracked because of the long period in between doses. The other thing too this gets rid of the doubt I get with the "Did I take it or didn't I?" with the full bottles of medication, which make it difficult to count out the daily dosages. When my can is empty. That's it for the day.

I agree with Jaye on the absorbtion issue. I found I need a good empty stomach in order to absorb my medication. I also take it with a full glass of water -not a swig to wash the pills down - a full 8 oz. glass of water. This helps with the nausea and the amount of time the medication takes to turn me from a tin man in the morning to an almost human being.

Regarding your current neuro, I would shop around for another one. This character sounds like he's on an ego trip more than anything else, and likes to put the patients down. When I went from my first neuro to my current one at Lahey, I documented my history in a word document. This was very helpful for her and she used this as a basis to start her treatment for me. Periodically I update it as best I can. It keeps track of my current medication as well as changes in symptoms and improvements, and give a copy to her for her records.

Remember you also need to push the medical community to do what's right. Right now they are driven by profit and insurance coverage. Insurance companies will fight tooth and nail to hold up treatment and medication for someone because it costs money. The actual doctor just wants to do his or her job, but they too have to justify any treatments not only to the management of the clinic, but also to the insurance companies themselves. So if you don't fit the 20 minute or less slot, you're thrown out with the diagnosis that "Everything is in your head. Go on happy pills and get over it."

We are looking for help, and are not doing them a favor by being at the clinic. Do they really think we like taking time off from work, losing our jobs, relationships, etc. because we are chronically ill? A lot of these so-called medical professionals have no clue what it's like. To them we're another bit of profit going into the coffers that they can suck out of us and the insurance companies.

If you don't speak up, they'll walk all over you and treat you like garbage. I found this out twice. The first was with thyroid cancer. I was told I had a lump and went for tests. No big deal...Then a biopsy that showed that the lump was suspicious of mixed-papollary follicular carcinoma. Well I got quite upset and talked to my primary care doctor. He said that there's nothing to worry about, and wanted to push the surgery out a year or so. No way, I wanted it out, and the hospital removed 1/2 of the thyroid. My PC doctor later on conceded that this was the best thing I could have done when I did. The tumor was benign but was changing he told me, and if I hadn't had it removed when I did, I'd end up losing the whole thyroid. Go figure...

The second time was with my PD journey. In 2005 I finally ended up with a neurologist. He diagnosed me, without any tests, as having focal distonia because I played the piano. No matter what I told him, he made up his mind. This initial visit lasted maybe 13 minutes tops, and I walked out more confused than helped. After he messed up one of his reports to my PC, I got my referral over to Lahey where I am now. My current neuro told me it was a good thing that I didn't go for the botox treatments that the first neuro insisted that I needed and I refused.

As my mom told me. "You are your own person and you know your body more than anyone else. If there's something wrong and you know it, it's best to get it checked out and try your best to find the right doctor to do it"

Having said this, I recommend that you contact a teaching clinic or hospital. They are willing to spend more time with you, the patient that needs care, than the local clinic that only worries how many patients it can crank through the turnstiles in a day. My primary care doctor told me this as I switched from the local neurological clinic to the more professionally run Lahey Clinic - one of the best health care institutions in the US today.

John

[made it up]

Jim,
Jaye and John made some excellent suggestions, can I just add though.
Your MDS sounds like a prize tosser!!
I'm guessing he doesn't treat people with implanted neurostimulators either or if he does not on a regular basis.
Have you asked around within your local parkinsons community for someone they can suggest?
When you find a reasonable Dr perhaps tell him you want an MRI to see whether the electrodes are implanted in a suboptimal position.
You have a right to some answers.
Best wishes

[chasmo]

I have counseled several hundred DBS'ers. The two things that always seem to be the problem is either 1. (bad)programming and/or 2.suboptimal lead placement.

1-2 millimeters can be the difference between one that works vs one that doesn't!

some thoughts:
1. patience with the programming process. I tell people to give them 12 tries; if they still can't get a good program on board, its time to go elsewhere.

2. even if it involves travel, access the best program you can, DBS is a highly technical surgery,, demanding a surgeon with great skill!
I would not even consider a surgeon who had less than 100 STN targeted procedures to their credit.

3.One should get a copy of their post-op MRI's if they want to get their lead placement verified.

Just one more observation, a half hour is the minimum that a MDS needs to program, and evaluate your PD and set your meds. 15 minutes is just a "patient mill" IMHO.

Charlie

[MikeTTF]

Jim,

Your post sounds like I could've wrote it.

I still miss a Sinemet dose every so often and have to suffer the shuffling death of bradykinesia.

Any amount of Sinemet brings with it "ballistic" Dyskinesia (my MDS's term)

Any protien in my stomach blocks the Sinemet - a 3 hour wait w/ Bradykinesia.

Programmer can't seem to find the "right" settings w/Sinemet. Found an excellent settings w/o Sinemet, but they won't allow it because of a risk for NMS.

$110K holes in my head and he won't set me up w/o Sinemet!!??

In 3 weeks I'm going in for a CAT scan (MRI is better for this? Jaye -Chasmo?) to check lead locations.

Advice for you? I carry around a folded up piece of paper with my chicken scratch handwriting for my next dose of Sinemet. (I'm on every 90 minutes)

Dump the smart alec MDS. You must have the best you can get - and liking him/her personally I find to be very important.

Mike

Originally Posted by Jim0918

It's hard enough even with the use of a timer, the alarm on my cell phone, etc to stick to a very timely schedule with your meds.. I can be off whether it be first thing in the morning or especially if I am late with a dose. I then take my meds which in my case I get results in about 30 mins. ( I try to take my meds on an empty stomach or else at least an hour from my mealtimes. But on occasion that 30 or even 45 mins go by and I still don't feel relief. I then take another half tablet and within 5-10 mins I am on, soon to be followed by bouncing off walls and head bobbing with dyskinesia. Then I try and wait it out not knowing when I should take another dose, how much to take, you get it. I know that the biggest part here is the regular timing of the dosage. I am never much more than 20 mins or so if I am late, if ever. most of the time I am right on but at times it happens. ie. I shut off the alarm thinking to take a pill and get sidetracked. I am at a loss as to what to do. I have had DBS. I cannot get the dosage down from PRIOR to my DBS that being 2 tablets of 25/100 every three hours and am now being seen by a third neurologist who seems to think that I have psychosomatic PD, WTF?? Any suggestions, I am open to anything, heck I've already been told by this guy that my PD symptoms are in my mind. Can you believe this? This is a great gig I've got goin' here, cant pay your bills, can't drive, get to take all these meds, been to the ER or in the hospital more this year than I ever have in my life. Not to mention the stress on my marriage, loss of my career, I could go on and on but you guys know what I'm talking about. I just want a little break. Tommorrow is another day that is centered on what time did I take my meds, when is the next one due, how am I doing-too little/too much. Hell, I can't count on being able to walk the damn dog I get so bad that I am about to fall due to being too off and my feet are shuffling or I'm bouncing all over the place. What is most depressing is that I am not getting much help here from the docs and this 3rd guy is a MDS!! At the end of my rope. Anyway thanks.

[Jim091866]

Thanks to all with your input, I've always said that someone with an experience (the patient) wins out over someone with an opinion (doctor), lol. I wake up with the meds at my bedside in a timer filled with meds for that day. I also have a bottle of water, like a squeeze bottle in case I dont feel like sitting up. I have a phone at which I set the alarm every 3 hrs. I prefer to use this one cause if I program the alarm to go off every 3 it only beeps a couple of times like a reminder, not an alarm. I have my MRI, pre and post op as a matter of fact as well as CT Scan. They're on CD. The MDS, the new guy, said that it appears that my DBS leads are in optimal positioning. My nuerosurgeon was trained at the Cleveland Clinic but I dont know how many DBS he has done. I do know that the hospital here in Sanford spent something like $10 mill. to give him his own staff and a gamma knife to get him here.

So that's where I'm at. As far as the meds are concerned I'm really ok with where I'm at right now. It's just that I would figure that with DBS, all that I've been through it's pretty poor to be having to take the meds this often- I've been charting this for the past 3 days now.
Monday I started out at 3 hr intervals and told myself gonna do 2 pills every 3 hours. Well that day had a number of offs and a little bit of dyskinesia later in the day, about 2 or 3. Then I was off from about 7:30 till 11 when I went to bed. I ate some rice and broccolli for dinner about 6:30. Go figure.

Tuesday I did 2 pills every 2 hrs. and I'm on track, have been all day. In fact a short period of off at about 12 but it didn't last long. So that's it, no different than before I had DBS except I don't get the dyskinsea as bad.
Oh yeah I forgot to tell you guys I'm on COMTAN TOO! How about that every 2 hrs WITH Comtan. SHHHHEEEEZ.

[Jaye]

What about too much Comtan? From my docs and those of a friend--we were told to take it every 4 hrs or to break it in half (which doesn't work for me), in the case of dosing with Sinemet more often. Fortunately I was able to go back to 4 hours after clearing up a sinus condition (ick and we don't want to go there).

I would have expected more of a DBS, too. I'm curious, they tell me not to wait because it only gives you as good as your best "on." True?

Charlie?

Jaye

[Jim091866]

Originally Posted by Jaye

What about too much Comtan? From my docs and those of a friend--we were told to take it every 4 hrs or to break it in half (which doesn't work for me), in the case of dosing with Sinemet more often. Fortunately I was able to go back to 4 hours after clearing up a sinus condition (ick and we don't want to go there).

I would have expected more of a DBS, too. I'm curious, they tell me not to wait because it only gives you as good as your best "on." True?

Charlie?

Jaye

Yes, I think its true that the DBS is only as good as your best on. For me the symptoms were the dyskinesia and the bradykinesia. I dont have any tremor. With the DBS I don't get the dyskinesia anywhere near what I had before. I was a train wreck prior to the DBS, it was a great help to me. I just can't believe that I still am taking so much medication to get through the day. I guess that it is what it is?? If you have a tremor I think your results will be dramatic! I take comtan 3x a day.

Jim