First post

[TheLordsWeapon]

Just a little about me, diagnosed June 2016, started with sinemet 100mg three times a day, now three years later meds look like this. Sinemet 250mg four times a day, requip 2mg once daily extended release. Having problems with dyskinesia, bad leg and foot cramps, will be seeing a new neurologist in October, that would make 3 total, first doc gave me artane back in 2016 caused severe side effects, ended up hospitalized for 3 months. My take.. it's all a crap shoot with meds...last three month's problems with Insomnia. I will be looking into medical cannabis. Need to get the sinemet dosage down which causes the dyskinesia in the first place,,,this is a nightmare and I'm only 3 years in at 56 years old.. God speed to all of you.... Jesus Christ is my strength and sanity I hope and pray that you have excepted him.

[ion_ion]

I was diagnosed in March 2017 but the symptoms started earlier. In 2017 I was in very bad shape-anxiety, depression, insomnia, tremor. First of all I accepted the situation and tried to calm down and that helped a lot. In March 2018 I started HDT (High Dose Thiamine HCL) 2g/day and that helped a lot with all non-motors symptoms. The tremor went down but not enough. Few months ago I started 3x100/25 sinemet and 2x100 amantadine to fix the tremor but it did not help too much. Two weeks ago I cut sinemet to 2x100/25 a day and I stopped amantadine. Just try to stay relaxed and avoid any stress! When going to bed I empty my mind and eat half of sweet onion.

[TheLordsWeapon in reply to ion_ion]

Thank you for sharing your story, there really is a caring atmosphere on the HU forums, none of us are alone....God Speed!

[johntPM]

I'm not a doctor, so make of this what you will. Are you sure your cramps are dyskinesia? They could be dystonia. Are you a big person? That would affect what the optimal dose is.

[TheLordsWeapon in reply to johntPM]

Hi John, one of my doctors called it Levodopa-induced or Parkinson's dyskinesia stating that people with Parkinsons who are being treated with levodopa usually develop some form of dyskinesia within 3-5 years of starting on levodopa (sinemet) especially on higher dosages. My most annoying symptoms are an uncomfortable writhing or wriggling while sitting still and my right hand and foot have involuntary movements usually during off times (between doses of Levo). Sometimes my arms or legs have involuntary movement, this usually only happens at bedtime when im trying to relax the body...even my jaw will snap shut in the middle of the night, bit my tongue and cheek more than a few times. And I stand corrected... Doc said that severe cramps could be a symptom of dystonia.

Thank you Sir for talking, God Speed!

[Softballman in reply to TheLordsWeapon]

Hi I’ve been dealing with dystonia in my foot and toes for about a year but only In the mornings. But the last several months it been occurring now between doses. Doctor prescribes Artane but after reading about it I’m hesitant to try. I’m try to recognize when I feel it coming on and chew up a single or a half of L/dopa and drink a.glass of water it’s usually start to kick in about 15 min. Most of the time it prevents the toe cramping. The inhaler that is new cost $65.00 per dose. It’s tricky stuff and the doctor not much help.

I’ve heard Botox can be used. But my doctor didn’t think I was a good candidate for it.

Good luck.

[TheLordsWeapon in reply to Softballman]

Hello... Drugs effect each person different as you know...artane for me was a psychiatric nightmare I had audio and visual hallucinations that started 3 days after start up and I ended up hospitalized the scary thing is all of drugs for PD have the same potential to cause these nasty side effects, it's all a crap shoot. when I started getting severe foot camps in the middle of the night, aside from the heavy daily dose of sinemet I'm on, 250mg four times a day,, I told the doctor o was taking 100mg doses once or twice over night to ease the foot cramps..which worked... Doc said "you have to do what you have to do", that was a real professional reply, pretty much telling me it's OK to regulate my own meds and then doc went and added 2mg of requip ER. I'm starting my own sinemet reduction plan.

.thanks for your replies.... God bless

[Bailey_Texas]

Hello Everquest99.

You are still a baby when consider how long you have had PD. I am in my i think my 16th year could be more or a little less. If you are not exercising everyday start tomorrow it will help. I think it should be 1 hour or more and you should be on the floor trying to get your breath back at the end. Hang in there on the meds you will have less side effects as you get use to them.

Good luck

[TheLordsWeapon in reply to Bailey_Texas]

Hello there!

Yes I started on a workout program a year ago, 4 days a week, trying to work my way up to 7 days, doing stationary bike for 20 min then walking another 20 and doing some selected lifting excercises with 30 pound dumbbells, must say its been tough to muster up the strength sometimes becasue of the lack of good sleep, only getting 4-6 hours a night on average for the last 3 months .

Good Speed!

[jeffmayer]

absolutely and I admire your faith and belief

[TheLordsWeapon in reply to jeffmayer]

Thank you Sir...

[Cbgs]

Same sitch !

New dosage : 1/4 of a 25/100 immediate release sinemet every 2 hours ,

1 of 50/200 extended release sinemet every 4 hours , 3 of 100 mg amantadine per day

If I’m “ too on” I’ll go longer between the 2 hours of the 1/4 dose

It is a crap shoot. ESP if your pre-menopause....the hormones change the medicines' effectiveness

But ya just keep on truckin!

Have u tried a movement specialist ?

Hope this helps

Be well

C!

[TheLordsWeapon in reply to Cbgs]

Hi there!

I was diagnosed 3 years ago by a general neurologist at Hartford hospital, but after a bad experience with side effects from the drug artane, he referred me to a movement specialist at Uconn Med Center in CT been going there now for almost 3 years. I've gotten to the point were I want another opinion so im off to see a new movement disorder specialist in October... I'll report back after that visit.

Thank you for your reply!

God Speed!

[Cbgs in reply to TheLordsWeapon]

I have some connections in CT !

If you'd like, I'd be happy to get a few recommendations?

I go to the....

Institute for Neurodegenerative Disorders

60 Temple St, Ste 8A, New Haven, CT 06510

I'm enrolled in the PPMI research program there... it's awesome !!

Parkinson's Progression Markers Initiative

ppmi-info.org

[TheLordsWeapon in reply to Cbgs]

Very kind of you to offer, but right now l will see how the new doctor works out in October and I just may take you up on your offer, l will keep you posted, thank you . much.. God bless

[Cbgs]

Ps: I may begin looking into the patch

May be less daunting than poppin pills every 2 hrs?

[TheLordsWeapon]

I thought about that myself, the patch or ER Sinemet, they even approved a new inhaler for off times treatment, its FDA approved but they say it will take a while for the drug to hit the market (6-12 months)

[JAS9]

I'm in a somewhat similar situation in that I have to reduce my C/L meds to get rid of dyskinesia (and increasing 'off' times). There was some pressure from my old neurologist to, instead, try more and other drugs. I believe the reason for this is that C/L med reduction can be difficult and time-consuming. It doesn't fit their pretty theory that they just have to find a new drug or dose that will fix the symptoms being caused by the existing drug and dose. They also don't trust their patients to make the right decisions and to stick with a reduction plan.

Fortunately, there are some (like my new neurologist) who will face reality and help us through it. Even so, I had to fight her a little before she agreed that it was better to deal with overmedication now before it caused more brain damage and became an even bigger problem. If you haven't read it yet, here's a sobering example: outthinkingparkinsons.com/a...

I've been reducing slowly for 2 months. I'm now taking 17% below my peak. The dyskinesia is gone(!) and the 'offs' are much improved, but of course I'm experiencing increased PD symptoms. Theoretically, over the next month or so my brain will reach a new balance. Then the PD should fade as my meds become more effective again. At that point, I may or may not decide to reduce further.

If you decide to do something similar, I'd like to keep in touch and compare notes. As for praying for me, I can use all the prayers anyone wants to send my way. I pray for us all.

[TheLordsWeapon in reply to JAS9]

I will put you on my prayer list, and thank you for your advice and insight on the meds were taking. I have done a lot of research on all drugs l put I to my system..bottom line is their all no good for your health long term, l will stay in touch and be happy to compare notes with you..... God bless

nea ton of research on all drugs

[trishtheteacher]

Hi Everquest99,

I'm 48. Diagnosed about 5 years ago. I'm on 100-25 carbidopa-levadopa, 1/2 tablet twice a day, amantadine, 100mg twice a day, and mucuna puriens (as needed, usually 3-4 times a day). I, too, have dyskenesia, which is why I take Amantadine. It helps, but doesn't resolve the issue 100%. I also have had bad leg and foot cramps. Magnesium citrate helps with those. What has the biggest effect on my symptoms is my diet. My husband and I do the Daniel Fast every year (sometimes twice a year), and I've noticed no dyskenesia, no cramping, and no dystonia while fasting. Additionally, my meds work better during the fast.

Also, I'm a believer, too, and seriously don't know how anyone could live with PD without a wonderful relationship with Jesus. I pray that our Heavenly Father will continue to use your testimony!

[TheLordsWeapon in reply to trishtheteacher]

Hello Trish,

Thank you for the kind words and sharing your story. I have found that diet plays a big part in the meds puzzle. I've read that Levodopa gets digested in the same area of the upper intestines that food proteins do thus reducing the amount of Levodopa that gets absorbed into the bloodstream which in turn shortens the "on" time of the med. After a lot of internet research, I started watching my protein intake, I stay very light on the protein content with a light breakfast, also light protein with lunch, then do a heavier protein intake for supper, fish, red meat, etc, etc. I now take Levodopa(Sinemet) 30 minutes before I eat a meal or 90 minutes after I eat a meal and this test alone that I initiated with no Doctor's input has reduced my "off" times from 75 minutes to about 40 minutes and has increased med "on" times about one hour which is very significant when your waiting on your next dose patiently. It's all a crap shoot with meds Trish as you well know, we carry our crosses best that we can in life with all glory going to God. The Lord's strength, love, and guidance and especially the love of family and friends on and offline will get us through this trial and surely the ones yet to come.

...God Speed!

2 Corinthians 12:7-10

I will say this: because these experiences I had were so tremendous, God was afraid I might be puffed up by them; so I was given a physical condition which has been a thorn in my flesh, a messenger from Satan to hurt and bother me and prick my pride. Three different times I begged God to make me well again. Each time he said, “No. But I am with you; that is all you need. My power shows up best in weak people.” Now I Paul am glad to boast about how weak I am; I am glad to be a living demonstration of Christ’s power, instead of showing off my own power and abilities. Since I know it is all for Christ’s good, I am quite happy about “the thorn,” and about insults and hardships, persecutions and difficulties; for when I am weak, then I am strong—the less I have, the more I depend on him.

[JAS9 in reply to TheLordsWeapon]

youtu.be/fBwU4ElBJxU(Not working as expected?)