Problems with medication

Recently, I noticed my PD symptoms were getting much worse. I was becoming forgetful, doing some really weird things, more shaky in general and in pain. I also noticed I was losing my hair by the handfuls, so I went online and checked the side effects of Sinemet. Yes, hair loss was one of them. So were all the other problems I was having. I contacted my neurologist and he asked me a bunch of questions. His decision: Sinemet was causing more problems than it was helping. He told me to stop taking it, doing it one pill back at a time until I was done with them. The morning after I stopped the first of the three pills, I was walking better, less wobble, less limp.

Checking further, Sinemet, IMO, is similar to chemo therapy. I would be nauseated, lose my hair, be in pain. All the PD symptoms were worse. The doctor told me I was in the early stages of the disease and the medication was too strong for me. I really do want to know why he thought it was a good idea to throw the darn stuff at me in the first place! It was as if he was playing pin the tail on the donkey...poke around with pills and see if they stick/work.

Since I am off the drug, I am feeling better. I do not have the "flu" like symptoms I had. I hope and pray my hair comes back, since it's bad enough to have PD without going bald as well. I am to go back to see my neurologist later in the year and we will start over, but...I hesitate now. I think he didn't do well by me in the first place and he has basically lost my trust. When the disease gets worse, I will think about it. For now, nothing, but I am taking coconut oil and will research further on the Internet.

18 Replies

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  • Once you have lost trust in your doctors It has gone for good.

    I do think many problems stem from over medication because they all prescribe what is the recommended dose

    we do not all fit into one category

  • JackieMJ,

    I was diagnosed in July of this year and was told to take Sinemet and Azilect. My reaction was also 'flu' like symptoms, diarrhea and my tremors were worse...I was a mess. I finally found a neurologist who's a specialist in the diagnosis and treatment of PD's and other movement disorders. He immediately got me off all PD meds and told me to deal with the anxiety and depression which is a significant part of the disease.

    I truly trust my Doc. which in itself has relieved my anxiety significantly.

  • My husband had horrible reactions to any anti-depressant, except-Celexa. He takes 10 mg. a day. Neurologist prescribed it-first one that has actually helped and not given him horrible side effects.

  • I'm off the Sinemet and feel much better to the point where I'm wondering if I have Parkinson's at all. As I said, I don't trust that neurologist and feel he just basically ignored me, gave me the full amount of medication and told me to go away. I am a Medicare patient and wonder if that is part of the problem. In any case, I'm off the deadly stuff and will try more things like coconut oil, possibly look for another neurologist once I feel the disease is bad enough to try again. Thank you for your response.

  • Good for you. Would you mind saying what symptoms you were having that resulted in the PD diagnosis? Did your stuttering go away?

  • Hi Jackie

    I am an 11 year veteran with the "beast" ands I have met many Neurologists - some good and some not so good. They tend to fall into two camps - prescribing medication early so as to maximise the time when you feel good and only prescribing sufficient medication to keep you going

    The best Neurologist I ever met (5 years ago) was in the former camp and I have to say his recommendations have worked for me (I am 70 next year and have recently taken up boxing training to gain greater mobility)

    You obviously were prescribed Sinemet too early - or at last too big a dosage.

    The only advice I can offer you - apart from exercise, exercise - is to research the drugs and engage in consultation with your Neurologist armed with more information. The biggest things I had to overcome was a) the seemingly rote method of dishing out medication (you should start with this - in my case Ropinirol which made me sick every day and did nothing for me - and then move on to this) and b) getting the Neurologist to accept my agenda for

    the consultation - not the case with the guy referred to above

    Take charge of your own life with Pd - we know so much more if we only have confidence in ourselves - but don't antagonise them as we need them for prescriptions!!

  • There is that (scripts). I think exercise and strength is really important. I recently realized I'm turning into a cream puff. Restarting an exercise program.

  • Good for you - I'm just going out to my home gym which I set up n the garage

  • I'm early stage PD and am on Azilect, coconut oil, Amantadine and exercise. Also Dr. Terry Wahls' diet. So far, so good. Sinemet scares me.

  • Sinemet was hard and very slow to get on 7 years ago but once at the minimal dose that worked for me it made life so much easier. I was stiff as a board, couldn't do my stretching routine, found myself sitting on the edge of the couch staring at the wall while an hour or two went by when I meant to go make dinner, and was too slow at everything. I could not figure out where the time went - had clocks everywhere to no avaiI, and had a taxing social work job and had to function. I tried 2 years ago to get off the Sinemet and the doctor reduced the dose on a weekly schedule. But then I started falling and crashing into doorways etc. I guess it's different for each of us and important to listen to our bodies and intuition. And find a doctor who really listens and works with you. Oh, and I am on Lyrica for another condition so maybe balancing the dopamine and GABA worked a little better, if recent research is accurate..

  • There was a time that Sinemet was the treatment for PD. My doctor did not prescribe it for me until a few years after diagnosis because it can cause other symptoms. I started on Azilect which worked miracles for me in the beginning, we added Sinemet about six months ago, I take as little as I can. I know the Azilect is still working because I had to go off of it for several days in the fall and my tremors were much worse.

  • Sinemet is the gold standard for Parkinson's. It prevents further loss of cells that produce dopamine. It's best to take the least amount possible, because-as the disease progresses, you will find that you need more and more. My husband is in year 21 of it, diagnosed at age 48. He started with only sinemet, low dose, once a day, then twice, etc. Dr. added an MAO inhibitor which also helped. Have to be very, very careful and carry a card with you because of deadly interactions. Went off that, and dr. tried him on other meds-had a horrible reaction of Azilect, Requip (bad med), Miripex. Changed drs because he was getting worse, and all the neuro could offer was more pills. She changed him to Stalevo which is a combo of 3 drugs for Parkinson's. It really helped until he reached the point that the wear off stage was coming within 90 min. of taking meds. Two years ago, he decided to have deep brain surgery, and the electrodes implanted and the neurostimulators placed in his chest. Immediately, his meds were cut in half. Had some complications-an infection in one incision, went through IV antibiotic treatment for 2 months, 6 hrs a day, everyday, had 3/4 of one electrode removed first, then replaced in April of 2013. Had a checkup yesterday-no tremors, can walk, although left foot still wants to turn a bit. Hand/eye coordination better. Cognitive skills, slipping a bit, not bad. Still doesn't drive much. Meds still at half, and some at 1/3. Takes Comtan 4x a day, low dose sinemet 4x a day, provigil one a day, Amantadine (a good one) 1 a day, and at night an extended release sinemet. That's all the Parkinson's meds he takes now. He was taking 6 Stalevo a day at a high dose, (it's a combo of sinemet, Comtan and another one) Requip-6 a day. Amantadine 3 a day, Provigil 2 a day. He also takes other meds for other things- blood pressure, thyroid, and tramadol at night for the muscle pain. He's back to doing stained glass, work on a wood lathe, and riding his recumbent bike. He also sleeps through the night. When you are first diagnosed, you are losing brain cells that produce dopamine, and to not take anything is allowing more to die. Husband hasn't had problems with sinemet, comtan, amantadine-you can be overmedicated because it takes that much to replace the dopamine in the brain. That's when you have to make a decision-where do I go from here. Sorry to be long, I'm not a doctor or anything, just a caregiver wife who's been through this for almost 21 years.

  • Hi Retired teacher. I was diagnosed with Pd in 1992. After learning more about Pd symptoms I realised that my Pd had started in 1963. That means that I have had Pd for over 50 years. At the time of being diagnised, I had to give up my high powered job, because I just was not functioning properly. For the next two years, my condition continued to get worse. At that time, I had been going to the gym for 90 minutes every day, and had been taking 1 Eldepryl twice a day. In 1994, I gave up the gym and started walking three times a week for one hour, at my highest pace. From then on, things started getting better. In 2002, my condition had improved so muich that I decided to write a book about it. Not to make money but to help others to look at other ways of treating Pd. My doctors did not like this and did everything they could to persuade other patients not to take any notice of what I said in my book, because, "I obviously do not have Pd". Did I diagnose myself? NO! Did I prescribe my own medication? NO!

    You make of this whatever you want. For more information, go to my website - reverseparkinsons.net or purchase my book, Reverse Parinson's Disease from Amazon.com.

    John

  • Your story is very inspiring. My husband was so talented, built guitars, houses, had his pilot's license, raced cars, and the diagnosis put him into a deep depression. He went back to college, earned his Air Frame & Power Plant license, competed internationally, and won 2nd and 3rd in the competition in the VICA meets-and the college hired him. For a long time, no one knew he had Parkinsons, either. But, when he was diagnosed with cancer, then a melanoma, it really took a toll on him. He had to quit teaching, and that took away his active life. Having to give up building, racing, flying, and teaching-getting him to exercise has been the most difficult thing to do. All his doctors told him, and continue to stress exercise is the key. Just this past Monday, they mentioned again-you must exercise to get back the muscle tone and the walking will be easier. I applaud you for the will to overcome this and to exercise. Thanks for the information and good advice. I will forward it to my husband and see if we can get him inspired enough to exercise.

  • Hi JackieMJ. Doctors learn their skills from reading books and case studies. They do not ever experience the medical problems they are being taught to deal with. You are the best person to know what works and what doesn't. I am not knocking the medical profession but we have to accept that they cannot always be right.

    Have you tried exercise? It is, in my experience and in the opinion of many others, the right way to go about treating Pd. The big plus factor is that it has no harmful side effects. If you would like to know more about what type of exercise to do and for how long then go to my website - reverseparkinsons.net - or get my book, "Reverse Parkinson's Disease" from Amazon.com.

    John

  • My husband has been off of his pd meds a year now, my decision, his body built up an intolerance to them, the side effects became a nightmare for him and myself. We are into alternative methods, all for the best. Thankful we got a new physician that works with us on nutritional support and has kept Check in doing blood tests regarding any deficiencies. Most part in many ways he has gotten better, no more of going downhill and no more tremors, head pressure, and violent behavior. I found someone very good at massage therapy which he gets once a week, also found someone does colon cleansing which we have done and will continue every six months of three sessions. I have been juicing organics, spinach,carrots, kale, ginger root, etc. adding fresh fruits in with the veggies. Have you had blood work to see if you are deficient in vitamins?

    Kind regards, Patti

  • Hi Prayingforacure. I have regular blood tests, and have acted on them whenever they have shown a deficiency. This is a must for everybody!

    John

  • Yes John, this is a must do.

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