Botox & Other Meds

[tlongmire]

I have severe Cervical Dystonia along with PD (2010) and I have had three Botox injections with no signicant improvement. My movements are slow, freezing episodes, (including hand while eating), no tremor but numerous other symptoms. I'm on carbi-levodopa 25/250 4 x day and one ER 50/200 at bedtime. I had success with Azilect for about a year. I tried Entacapone side effects tremor & balance and Neupro patch numerous side effects. I also take Paxil and .50 mg Clonzapam at bedtime.

I feel like I could handle the Parkinson's symptoms, as bad as they are, if I could get relief from the Dystonia. Any suggestions???

Hugs, Terri

[Lincpolio]

I do not know if this might help but are you aware that the main Parkinsons Meds [dopamine] need taking an hour clear of protein and two hours for beef protein. We first learned this in the States in about 2006 and it has made a big difference. We were told by a Parkinsons Neurologist in Florida that absorption of the dopamine is reduced if protein in the stomach. We were about to start an increase in tablets x 3 to 4 a day and were able to delay this for a few more years. Now on 5 Stalevo 125mg a day plus other meds.

[tlongmire in reply to Lincpolio]

Thanks, I'll give that a try. I was told to take meds a 1/2 hour before meals or an hour after meals.

[charsie]

Terri, you have a very interesting history of both drugs and symptoms. I can only imagine the interactions and keeping track. May I offer you a Excel spreadsheet that has 100+ Symptoms that I created - the most complete out there.

Simply e-mail me with 'Symptoms' in the title to: [e-mail]

Also included is the 'How to Use...' which shows the many features.

Note: This offer is FREE and available to anyone.

[tlongmire in reply to charsie]

Thanks so much Charsie.

[etterus]

I also have no tremors. Twenty percent of us are PIGD(postural instability gait disorder). We are likely to have dystonia which is severe rigidity in certain muscles and painful. I had extreme problems with my feet especially at night. DBS has changed all of that. I would do it again.... Wish I had it performed a year or two earlier.

[tlongmire in reply to etterus]

Etterus my DatScan shows Parkinson's right side dominate. I also lean to the left and just suffered my 59th fall on Thursday (3 1/2 years). My toes are also affected by Dystonia. My Neuro has not mentioned surgery but I'm doing trigger point injections, Botox injections, acupuncture and physical therapy. I've read about the Bertrand procedure which sounded hopeful but I guess it's not done that much anymore. DBS scares me. Did it work for your Dystonia? My head turns to the left and downward to my chest. I can't see my face in the mirror unless my husband holds my head up for me.

Hugs, Terri

[etterus in reply to tlongmire]

Teri most definiety. I still have mild dystonia in my feet when I'm off, but it is minor in comparison. I was crawling to the toilet 3

-4 times a night before but now seldom walk more than once a night. I had it performed at Oregon pHealth Scinence University inPortland Or. I was under anesthesia and went home the next day. Aren't you in AZ?

[tlongmire in reply to etterus]

Etterus,

Yes, I am in AZ. You moved from AZ to Oregon to be near or with your son and out of the AZ heat. This assumes I am remembering correctly.

Regarding DBS It's the anesthesia I'm most fearful of, but also the stories I've read about the programming after the procedure.

Hugs, Terri

[etterus in reply to tlongmire]

Teri. The programming has been easy to tolerate. A lot easier than Botox.

[Bobbi_Jean]

Have you considered DBS?

[tlongmire in reply to Bobbi_Jean]

I have but it scares me. I'm going to talk to my Neuro about both DBS and the Bertrand procedure at my next quarterly appointment in June.

Hugs, Terri

[Parkiewife]

Husband was going through same symptoms as you. He's had DBS for 11 years now. It only can be described as miraculous! Never a problem with anesthesia - then or with other procedures. You should investigate - also it is reversible if better treatments are found. Good luck.

[tlongmire]

Thanks everyone. I saw my Neuro on Wednesday. She changed my meds and said my Dystonia is a result of progression of PD or PD meds or a combination. There was nothing more that could be done other than PT and things like acupuncture, massage etc. to help with pain. I asked her about the Bertrand procedure (surgery). She didn't think it would beneficial because the Botox injections didn't work for me.

I am going to try some supplements and would be interested in the kind and quantity any of you are taking.

In the meantime, I'll just keep plugging along práying for a miracle and a cure for all who are afflicted with awful disease.

Hugs, Terri

[mplsmaxx]

I had one treatment for Cervical Dystonia. it just weakened my neck so that my head wasn't getting proper support. It felt "dislocated" and caused a lot of intense sharp pain.