While my #1 Neurologist diagnosed me with something I never wanted, my #1 Neurologist was one I was very lucky to have known. I only had two one hour visits with him, he was so passionate and willing to help. He told the wife and I, anytime you need my advice or help phone me any time, email me any time, I'm here to help. The wife and I didn't have the luxury of picking a #2 Neurologist, we had to take the first one who agreed to take me as a new patient. After traveling ten hours south to see him for the first time, I thought he would examine me, and discuss how I was doing on my current medications, but there was none of that.
He based my next lot of medication on what he saw in front of him, a tremoring, stuttering sufferer with serious balance issues. That medication was, Simipex XR ER Tablet 0.75MG, to be taken once a day in the morning. Over two years many problems arose and the handling of those problems were met with, well my other PD patience don't have problems with it. The wife had also sought his advice on the possible use of CBD Oil, this he was not in favour of. I found his attitude not to my liking, so began looking for another Neurologist.
Neurologist #3 we found three hours travel away south of us. A young chap who on our first visit did examine me and listen to my problems with the Simipex medication. He didn’t like what he heard us tell of that medication so he devised a way to get off it, sadly I went through hell, so after being contacted by my wife he decided I should keep taking it and he’d find another medication to help with my problems.
The medication he came up with was, (ENTACAPONE) Comtan, in tablet form 200MG and is taken every 4 hours with my Madopar tablets, while I still had to take my SIMIPEX once a day as I had been doing. I’ve been on, Comtan, not quite two years, things have not improved. In early April of this year ’23, I had washed my hair in the shower, slipped on the shower floor falling and breaking a rib, which saw me hospitalised, I had already made an appointment to see my GP about extensive pain I was having in the area of my prostrate.
After being released from hospital I went and saw my GP. An ultra sound was ordered and found that my prostrate had become swollen, instead of being around its normal walnut size, it had swollen to the size of a kidney. I was put on medication by my GP called, (DUTASTERIDE/TAMSULOSIN) which on my container is called, DOUBLUTS MR-CAPSULES 500MCG/400MCG.This I took once a day for three months until my prostrate settled down and the pain was gone. Blood test done at the same time came back indicating no signs of cancer.
My wife had contacted #3 Neurologist about a few problems that this new medication was having on me, the next visit to him was for me to consider a Deep Brain Operation, but I told him that was never going to happen. That we had looked at this operation in our research and it wasn’t something I was interested in, because of a lot of failures with other sufferers and I wasn’t prepared to go through that at all.
Then came the suggestion that maybe it would be worth considering an operation, where some device is implanted so that my medication could be injected in thus by passing my gut, so I wouldn’t have to swallow all me medication. I was told that by going through the gut such an operation would allow my medications to enter my body quicker thus avoiding those drop offs one does get when not taking their meds on time. I rejected this after some consideration. I have with me everywhere I go, what I call my ‘Beeper’, a small alarm device that goes off every 4 hours so I don’t forget to take my medications. Along with it is my medication container with a complete days medication with it.
Yes I at times will leave this Beeper on the ground, or a workshop table and wander off forgetting about it, so I do sometimes have to endure medication drop offs until I remember where I left it. With medication problems and the side effects of those medication yet to be sorted out, why on earth would I need to get them into my body quicker, to sufferer the side effects that are yet to be addressed. I have for some months now started suffering from headaches and real bad dizziness in my head within 15 to 20 minutes after I take my medications daily at 4 hours, this is now a big problem, so on 1st September 2023, not that long ago, we travelled south to see #3 Neurologist.
My appointment was set down for 12:00 mid-day, he was running late and we didn’t get into his surgery until around 12:30. My medication I had taken at mid-day while sitting in the waiting room and by the time I was in his surgery my headache had appeared and I was all over the place like a mad man’s breakfast. The same old questions were asked, how you been going? and the same old little circus tricks such as following his finger, making me fingers touch one another on me hands as quickly as possible, blood pressure sitting and standing, you no doubt know exactly what I’m talking about, were carried out.
When I and the wife explained what was now happening to me every time I took me medications, it was if what we told him went in one ear and out the other. He then mentioned the deep brain surgery and the inserting of a device for injecting my medications, but I pulled him up and told him, my decision had been made, end of discussion. Again I banged on about my prostrate problems and headaches, but he was now only interested in, had my sleep improved.
I told him in regards to my sleep, I took my (PREGABALIN) LYZALON CAPSULE of 75MG, when I added a capsule of CBD Oil of six to seven drops, I got now and then a good night’s sleep, but not often. So he has now increased my LYZALON Capsules from 75mg to 100 mg. And that was it, he showed no concerns to my prostrate problems or the headaches I was now suffering.
Now what I’m about to put here comes from an extensive study into a medication called, Comtan, also known as, Entacapone. This information was made available to consumers when Comtan was approved for sale in Canada. Comtan tablets contain entacapone and are used together with, levodopa/carbidopa, or levodopa/benserazide to treat people with Parkinson’s disease. It is designed for those Parkinson's Sufferers who experience fluctuations in the symptoms of Parkinson’s disease (end-of-dose “wearing-off”).
What it does: In Parkinson’s disease the amount of dopamine is decreased in certain areas of the brain and oral levodopa is given to compensate for this decrease. Levodopa is converted to dopamine in the brain, but part of the dose of levodopa is broken down in the body to an inactive substance before it reaches the brain. Comtan helps to prevent this breakdown of levodopa, and increases the amount of levodopa that gets to the brain.
When taken together with levodopa, Comtan aids levodopa in relieving the symptoms of Parkinson’s disease, such as shaking of the limbs and stiffness and slowness of movement. Comtan has no effect on relieving the symptoms of Parkinson’s disease unless taken with levodopa.
Warnings and Precautions, When it should not be used:
You should NOT take Comtan if:
You feel sleepy, drowsy, or, rarely, may suddenly fall asleep without warning (i.e. without feeling sleepy or drowsy) when taking Comtan in combination with levodopa and other drugs used to treat Parkinson’s disease. Take special care when you drive or operate a machine. If you experience excessive drowsiness or a sudden sleep onset episode, refrain from driving and operating machines, and contact your physician.
Up until #2 Neurologist decided to add that ‘SIMIPEX XR ER Tablet to my medications to take, I was able to drive with what #1 Neurologist had me on. I’m not stupid, if at any time I felt I was not capable of driving, ie, had a bad day. I would not drive at all. Yes I love my independence, but I will never use my independence to endanger other road users.
This extensive study goes on to say, Studies of people with Parkinson’s disease shows that they may be at an increased risk of developing melanoma. A form of skin cancer, when compared to people without Parkinson’s disease.
Yes I have had Melanoma removed from my face below the right eye some years ago before that to remove a cancer that had grown around my left eye. Yes #3 Neurologist has been told this and has noted them in my records. One Melanoma on my back located in the right shoulder after being removed, I had to return and have the stitches removed so they could go deeper to remove more that they had been unable to get the first time.
It is not known if this problem is associated with Parkinson’s disease or the drugs used to treat Parkinson’s disease. Therefore, your doctor should perform periodic skin examinations. Well he has never given me such an examination.
In a study of patients with early stage Parkinson’s disease, who were treated with levodopa/carbidopa or entacapone, in combination with levodopa/carbidopa for an average of about 3 years, prostate cancer was reported more frequently, in the group of patients that received entacapone.
It is not known if treatment with entacapone affects the risk of having prostate cancer. Therefore, it is important for men to have their regular prostate examinations during treatment with entacapone.
I now feel that it is time to contact #3 Neurologist and part company for the betterment of my own health. I have contacted my Pharmacist and asked them to let me know how to get off this medication called Comtan. The information I will give to my GP, who has told me a number of times, he’d like to help me with my other health problems but he is concerned about Simipex and Comtan and I should raise these for discussion with my #3 Neurologist.
I have!
But He Aint Listening.
72andnotout. 10-09-2023.
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