Hi Forum
I have posted my challenges and success with recent DBS. The stimulator was turned on August 5th. I was immediately able to walk. The past few days my legs feel tired and I have felt pins and needles , to a moderate degree, in my feet. I can still walk with no problem. What I need help with is weight gain about 20lbs. There is a lot of info on the net about this. Can anyone help me out with controlling weight gain? I am constantly hungry all the time. 1 hour a day of exercise is not helping. My neuro told me it should level off about 3 to 6 months. The weight is all in my belly. Has anyone experienced this and successfully dealt with it. All replies appreciated.
Thank you
Damon

Hi Damon,
I'm also new to the forum and to posting. I've been diagnosed with PD about 2 yrs now and taking Azilect 1mg and Miraplex 1.5mg daily. In addition to these meds I get acupuncture every 10 days, exercise 1 hour a day, get infused with 3000mg of glutathione once a week, take the usual supplements, and follow a low carb, high fat diet. I've been diagnosed gluten sensitive so I eliminated that and started following the diet in "Grain Brain" by Dr Perlmutter. I've struggled most of my life with weight issues and was gradually getting my weight under control but always hungry. Since going gluten free and following the low carb diet I've lost 15 lbs and I did it without being hungary. I eat all the time and don't gain any weight. Basically the diet is all organic, no processed foods, no or very limited carbohydrates, and a lot of fat but "good fat" like avocado, olive oil, cheese, nuts, fish, and eggs. At one time I was a sugar addict but after I eliminated carbs from my diet I stopped craving them. I purchased the book "Grain Brain" and started following the diet it worked for me and I'd tried them all. I hope this has been helpful; I can only tell you what has worked for me.

Has your weight gain been since DBS? If so is weight gain common after this procedure? Thank you for posting your DBS experience as I've been thinking about having it done because of the side effects of these meds. I don't think I could tolerate an increase in the Miraplex and can not get rid of these tremors. Meds have helped but they are my main symptom. Wine helps too and it's on the diet!
Good luck to you and to all of us.
Betsy

Betsy
Thank you for sharing.
It sounds like you are on the modified Atkins diet. This diet is good for quick weight loss. Basically it has no limitations on protein just all carbohydrates good and bad. Long term the regular Atkins diet is not healthy. Your modified version is better because you are watching fats and gluten. Just a note..avacodos are high in carbs. The first 5-7 lbs is water weight. I considered going on the standard Atkins diet but there is a problem. I take sinemet which is recommended to be taken with carbs. Proteins are the primary source of food
with Atkins. I would be inhibiting the sinemet and not being able to to do my nutribullet juice (vegetables and fruits) however if this weight trend doesn 't stop
I may be forced to Atkins. You raise some interesting questions. What is glutathione? Weight gain is a side effect of DBS. I have gained 20 lbs in 2 months. Although it is a small price to pay if I am able to walk I do not want to be 300lbs. Currently I am 230 but 6'1" tall. You also mention Mirapex Are the meds you listed working? I can ID with being a sugar addict.
write later Have a nice day.
Damon

Hi Damon,
I read Grain Brain and went on the diet because it was supposed to be neuroprotective and decrease inflammation. Weight loss was a nice bonus. Dr. Perlmutter suggests a daily limit for carbs and says "good" fats are good for the brain and sugar is bad. This diet is supposed to be long term and healthy. I'm not sure what the Adkins diet recommends but I eat fruit just not a lot but lots of vegetables roasted in olive oil. If I hadn't been sick I'm not sure I would have been motivated to give up all my favorite foods but now this is how I plan to continue eating. Diet recommdations are backed up by studies in the book. It's an interesting book written nicely. I got it off Amazon.

I'm really glad you are doing well with the DBS had no idea weight gain could be an issue. When I was first diagnosed with ET I went to see Dr Perlmutter in Naples. He's the one who told me I had PD and ordered a DaT scan and put me on glutathione. I think he may be the only MD prescribing it for PD IV push. It's a compound medication made in his pharmacy (at least I think
he has some ownership). Glutathione is a powerful antioxidant that gets depleted in PD. It's controversial and your mainstream doctors will not recommend you take it. It's prescribed twice a week but I can only manage once a week. It seems to have a calming effect on my tremors and gives me energy. I get better results if the IV infusion is around the time I get acupuncture. It's sold in many forms in health food stores and online.
The meds I'm taking are barely keeping my tremors under control. I don't want to increase the Miraplex because of the side effects in particular fluid retention. I have to manage this very aggressively by wearing lite compression stockings every day. Exercise has done the most for me and meds have helped the tremors. BTW the azilecte is very expensive I buy online from a Canadian pharmacy,the miraplex comes from another pharmacy and costs less at a $1.00/pill.
Take care.
Betsy

Hi Betsy
I can relate to not wanting to increase my meds. I can only write from Sinemet
and Requip. The Requip IMHO made me worse and very tired. The only other med I have taken is Sinemet. This to , in high doses can cause paranoia and sleep problems. After DBS my programmer stopped the comptan. The second time she reduced the 25/100 to 14 from 21mg...and 1 reduction of 3 50/200 CR to 2 pills. The paranoia and other side effects have dissipated. I would like to decrease more. On the third programming just 1 25/100 was reduced. My next programming is in December. I have changed my diet to modified Atkins where I can consume as much leafy greens and 1 or 2 handfuls of fruits. I also have greek yogurt and organic whole wheat bread sparingly. Snacks include hard boiled eggs, 12 cashews and carb free protein bar. For dinner I eat Salmon ,chicken and turkey. There is research out there that touts Atkins as neuro protective but to counter that claim the inhibition of sinemet's effectiveness is jeopardized. Thus far 6 days I have lost 2 lbs nothing to write home about. If I were to stick to a strict 20grams per day Atkin's plan. I probably would have lost 6 to 8 lbs. Atkins benefits as a potential for slowing progression, are not enough to consume fat every day. For now I will stay the course. Another problem with Atkins is the rapid weight gain and more of it should it be stopped

Hi Damon,

I've been in NYC celebrating my daughter's 25th birthday, going nonstop with NYC marathon and party, theatre, dinners, Knicks Wizards game, and shopping so been out of touch. Reality hits Friday when I go home.
I'm so happy that you've been able to get off some of these IMHO horrible meds.
I'm on relatively low doses of Miraplex (1.5mg) and it's hard now to tolerate the side effects on some days. It's different on different days. Not sure why. So I see BDS in my future but hoping something less drastic can be done in the future. I have the utmost respect and admiration for you and the many others who have undergone this procedure. It freaks me out watching this procedure on YouTube while people are AWAKE. So, I'm happy, from the sounds of it, that you are doing better and able to lower your medication dosage. How is your mobility doing? Is that improving? Are you driving?
As for the diet, It sounds like we are eating the same things. I think the diet I'm on may allow more carbs 50-60 gms per day but I really don't count. I know what to eat and most of the time stick to the plan. Yes, I've read the same literature posted on this forum about this diet being neuro protective but that's what Dr. Perlmutter claimed in his book; that's why I started following the diet.
It gets easier and the desire for all carbs gets less and less, at least for me, the longer I've been on the diet. Even in NYC the past week I've followed the diet except I'm eating more fruit and less vegetables and definitely a lot less organic than when I'm home. But, no weight gain, of course between the hotel treadmill and all the walking outside that helps.
Please keep me posted on your diet and DBS progress. I'm cheering you on!!
I'm curious about one thing, is this weight gain just a temporary thing with DBS or is it different with different people or is it something you have to learn to live with?
All the best,

Betsy

Hi Betsy and Damon,
I had DBS almost 11 yrs ago and found I gained wt fairly rapidly after the procedure.
My neuro told me its because of the calories we lose when we're dyskinesic and since that ceases after DBS we gain wt.
For me as well as that I would have to add my sudden joy of eating whatever and whenever I liked!
Ive started being more cautious of what and when I eat lately and now that I'm back to relying on Sinemet a bit more find that it works so much better on a relatively empty stomach.
Best wishes.

Thank you for that information. Do you feel that the DBS has helped slow any progression of the PD down? I hear the PD still progresses but hear there is some talk about stem cells possibly growing as a result of DBS. How have you been doing these past 11 years? I keep hearing it makes an amazing difference in your life. I hope that's been your experience. Are you driving and exercising and generally getting around ok? Hope I'm not asking too many questions I'm just really curious about this whole thing.
Thank you and all the best.
Betsy

Hi again Betsy,
There has been peer reviewed findings in recent yrs that DBS done early rather than later in the course of PD has been beneficial.
I have a full drivers licence and still drive. I do most things like before.
Cook, shop, laundry etc.
I cycle on a stationary bike in the cooler months and now that its warming up here I exercise in the pool.
I've had PD formally diagnosed for 20 yrs now and was in my mid 30's when told I had it.
I know the PD has progressed but only because my neurostimulators or IPG's (internal pulse generators) as the batteries are known as both went completely flat on me 2 yrs ago and the few days without them were awful!
My Sinemet dosage soared and i had episodes where I couldn't move any part of me but could still speak so had my husband put Sinemet in my mouth as I couldn't.
Feeling so unwell and dependant really made me grateful for the independence that I enjoy on an everyday basis now and the realisation that without DBS in my case anyway I would have to depend on others so much.
In the early days after DBS was first done I managed without any meds at all but thats not very common and in retrospect I should've or could've taken a little but chose not too.
I take it on a regular basis now and have had no further recurrence of the dreaded dyskinesia which was bad before DBS.
Bradykinesia is minimal too, now when off its more a feeling of rigidity.
If you need further info there are websites like yahoo DBS that have many knowledgeable recipients of DBS that i think would be glad to help as well.
Best wishes.

Hi Betsy
Weight gain in DBS is probably different degrees . Mine seem to have leveled off. I am stuck with 229s lbs. My MDS stated 3 to 6 months and it may become stable. Prior to surgery I was to busy worrying about walking and symptoms of
caused by the meds mainly paranoia. Not being able to walk burns calories as do dyskinesias . After DBS there is constant stimulation where the metabolition
becomes stable probably lower. I am not sure what caused the excessive appetite but I have it under control. I try to eat healthy while watching calories
I use the nutribullet for veggies and fruit. I was scared to have DBS. It really is not as bad as it sounds. It does not hurt (mild discomfort). I am due on Dec 18 for my 4th programing. I have only "on" time. The ability to drive has been renewed. The only discomfort is a heavy feeling in my legs which will be targeted at the next programing. The meds have been reduced by about 40%. Congrats on your daughters 25th birthday. To sum it up, when the ability to take care of yourself is gone and the meds stop working as they use to, DBS will enhance your quality of life.