Day One with Sinemet
Yesterday was the first full day of taking Sinemet again, as well as the Requip and Zelepar I was already on. I also had the Lodosyn and Sucralfate I requested from the ER doc, so that the Sinemet had a better chance of not making me so nauseated, the way it did last year. I started the morning hardly able to feed myself or walk, but ended the day almost back to my normal state. That was a huge relief, to say the least!!!
I also talked to my Gastroenterologist last night, but without any real conclusion to my gas and belching problem, or my elimination difficulties. He basically just asked me a lot of questions, most of which I could not give him any clear cut answer to, and told me to go on and make an appointment with him. I told him about the ER trip, and how I had been delaying my Neuro appointment, waiting for a diagnosis. He said to go on and make the Neurologist appointment, so I’ll do that today. The fact that he has taken so long going over all the diary I gave him, plus his obvious quandary as to what is going on, leads me to think that a serious diagnosis is not jumping out at him as likely. That is what I’m going to assume, anyway.
The comical part of all this was trying to figure out a schedule to add in three more meds, taking into account all the restrictions on timing and eating and nearness to other meds that each one has. I finally wrote out today’s schedule, and I’m taking one or more medicines today at 5AM, 6, 7:30, 9, 11, 12, 1:15, 3, 5, 6:30, and 8PM! And that doesn’t count the Myralax that goes on my cereal or the glycerin suppositories I use! You should see the size of my pill boxes!! Oops, my timer just went off…. time to go take medicine LOL!
Well, I’m back. I just took the Sucralfate, a hog pill that I had trouble swallowing yesterday. Last night we cut it in half, but I still choked on it, because it’s so dry going down. So, this morning I soaked the two halves in a tablespoon of water, and swallowed that. That was much easier, although I can still feel the dry scratchiness down my throat. That’s one of my new stomach protector meds, so I have to take it, uncomfortable or not.
Each day is a new adventure with this PD, with some days being hopeful and others being miserable. Thank goodness I don’t often get as down as I was Sunday night. I thank God for that!! And, I thank you for caring enough to say an encouraging word, too, as I surely need it.
I hope you are feeling much better. I can understand why your doctor wanted you to be checked for an infection – steroids such as celestone tend to lower people’s immune system. Combine that with your PD and it’s a double whammy. Since some of the symptoms you described can be produced by a systemic infection, he did right for checking.
Good luck with your gastroenterologist. One word of caution – be very careful if the MD wants to give you reglan. It’s a common medication that helps intestinal mobility, but some people have nasty side effects from it (I had a near psychotic break when I was given the med before my gallbladder surgery) When I told my neurologist about it, he said that medication should never be prescribed for anyone with PD – it tends to worsen the PD symptoms, sometimes irreversibly.
Again, I hope all turns out well for you.
DB,
I am so thankful that you began a diary at the beginning. I can’t begin to imagine how helpful that must be.
And I am so glad you are feeling better. What a great thing you are doing, with your site. There is so much good info here, along with the comments from others.
Keep your chin up!
Thanks for the reminder about the Reglan, Joe. I had found that bit of information when I was learning about Demerol being something PWP can’t have during surgery. It seems Reglan is commonly given for operations to reduce the chance of the anesthesia causing vomiting and aspiration.
I did not realize that a medicine wrongly prescribed could cause such irreversible increase in PD symptoms, though. All the more reason to do all the research I can!
We had kept journals on our parents as we took care of them, Marion, and had seen how very important they became over time. Being able to show the ER doctor in writing something I had most definitely written over a year ago gave him no reason to doubt that this is what my Neurologist would have chosen for me.
To his credit, though, he did look up the Lodosyn in his pocket PDR, as he was not familiar with it. It must be rather unusual, as CVS, a giant pharmacy chain, had to order it for me when we filled the prescriptions there, because it was Sunday and our pharmacist is not open on weekends. Luckily, I still had some left from last year to take until we go to town tomorrow.
Have you tried eating a small cracker, not one with protein (such as a cheese cracker) with Sinemet? Initially I vomitted a lot with Sinemet but taking the cracker with it worked like a charm for me.
Good luck,
Kate Kelsall
Thanks for the suggestion, Kate. I’m taking the Sinemet with meals for now, just so that won’t be part of the problem. And, thank goodness, I haven’t thrown up again.