What is Parkinsons Disease
Parkinson's disease (paralysis agitans or PD) is a movement disorder often characterized by muscle rigidity, tremor, a slowing of physical movement (bradykinesia), and in extreme c...
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I'm not sure what's going on....
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Good afternoon to all!!!
So, I've been back from Disney World for nearly a week now and of course when I got home I had tons of laundry to do, mowing of the grass to be done, two little girls to entertain, friends to "catch up with", etc. So, I've been going nearly nonstop since I got back. Just pushing through the painful muscle cramps, etc. However, I've noticed that over the last 3 to 4 days, my meds seem to not be working at all. I can barely swallow again. I'm totally fatigued. I'm severely anxious and don't want anyone around me, i.e. irritable. My eyes are all blurry and my right eye lid is twitching like mad. I have my lovely stabbing pain in my right ear and feel like I'm vibrating all over, my balance is WAY off, my blood pressure is low and I feel faint nearly all the time, etc. etc. What's going on? My doctor has suggested that I might actually have MSA instead of "standard" PD and one of the tell tale warning signs of that, is Sinemet working at the start, but, quickly becoming ineffective. Am I panicking for nothing? I'm still on a pretty low dose of Sinemet, so maybe I just need more. (I'm taking 2 10/100's 3 times a day.) Is it normal to need to increase the dose so quickly? I've only been taking it for 5 weeks now. I just feel horrible today and I just wanted to reach out to the people who understand the most. All of you. So, thanks for reading this and maybe giving me some words of wisdom. Thanks, y'all!!! Bec Posted on 06/07/09, 02:06 pm |
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I think you might need more medication but you haven't been on them long enough yet. It takes abut 3 months to notice if they are helping. O My husband started with 1 pill 4 times a day, which was 100mg/25mg of Levodopa and Carbidopa. He was on this for 3 months and he didn't have any signs of a change so they increased his dose to 1 1/2 pilss 4 times a day. He has tremors but he also has fatigue which is his biggest battle. After they increased the dosage he began to feel better but we are thinking that they might have to increase it again. He's only been taking them for a year, but we have to wait to see the Motion Disorder Specialist next month. 
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I had to ramp up to 2-100/25 3x per day, plus as well 1 mg Azilicet. This has made a world of difference for me. I've only been on it now for 4 months.
I can still get slight cramping at night however after my workout, but its manageable...for now. C
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Lets hope that its not MSA! These other replies may have much wisdom.
There have been studies done that directly connect symptom changes to changes with your environment, for example: barometric pressure, mean temperature and pollutants. Either way, hang in there, and all the best!
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Perhaps you're trying to do too much and should try to rest in between activities. Before increasing meds. that you just started taking recently, I suggest calming the body and mind. You are ill and, despite wanting to do as you did before, accept that you need physical rest and, in my opinion, emotional and mental rest. If you don't meditate, which I highly recommend, at least take time in between activities to sit/lie still in a quiet place, calm your mind, and take at least 20 deep, cleansing breaths. Focus on your breathing, clear your mind of all the "clutter," and achieve inner tranquility and peace. Stress is your enemy and, you may not be aware that even simply having lots of commotion even if not negative, is still stress for your body. I wish you all the best.
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You know, now that you say that, I can see it. I even start to feel badly when my daughters start to play too loudly. I feel horrible because it's as if the more fun they're having the MORE stressed out I get. I feel like such an ogre.
I'm going to see a new Neurologist tomorrow and I'm scared to death. My insurance would love for me to be UN-diagnosed, I'm sure. As would SSDI. I'm always afraid when I see someone new. They always want to run a hundred more tests and make me feel like I'm just a fat, lazy and crazy lady. The stress is pretty intense. Hell, maybe in the end, that'll be good, because my symptoms will be in overdrive!!! How, exactly would I go about finding some peace and quiet when both of my daughters home for the summer? I have one with a form of autism and one that's severely dyslexic. I have to keep them "going" on with school stuff all the time or they "lose" what they learned the year before. I have to keep my house clean, mow my front and back yards and do all the cooking, shopping and bill paying, etc. for my family of 4. I'm so overwhelmed at times, that I just cry. The pain can be overwhelming, too. Maybe this doctor tomorrow will have some advice, aye? Keep your fingers crossed and say a little prayer for me, please.
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As for how to find some quiet time, Becca, I recommend making it a priority, right up there with taking your medications when you need to do so. Perhaps your husband or other family member(s) or friends can take turns looking after your children for 30 minutes or an hour per day, during which time you can go into another room or other quiet place to meditate/"get centered." If you're now completely on your own, then do the best you can...leave the room for a few minutes to do the breathing exercises in the bathroom, if necessary. It's the breathing exercise, not the location, that's important and even two minutes of deep breathing exercises a few times per day is much better than none. When there's a will, there's a way, somehow. In any event, I'd do it before I would increase Sinemet. As seen with my mom, increased dosages of Sinemet bring about some unpleasant mental/emotional changes (e.g., increased anxiety, aggression). Another suggestion: as a mother, you probably always put yourself last. It's time that you make yourself, your health, a priority. If you are no longer able to care for yourself, how can you take care of your family? You need to take care of you. :-)
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