Anyone had experience with modafinil for parkinson’s fatigue?

Hi there I am new to this support group I too have severe fatigue and lack of sleep. I am going in a few hours to follow up with my primary doctor. I will be discussing this very thing. I will also try to find out if this medicine helps and my doctors opinion. I am young onset Parkinson's and want to find out if the blood pressure problems I am having is contributing to the fatigue and lack of sleep. Thursday at 2:00 am I passed out so ems came to assess me. I was stable but low blood pressure. I know some how it is all related but if there is something to help control the fatigue everything else might straighten out . I will get back with you and hopefully find some useful information for all of us! Thank you for sharing and allowing me to be a part. Wendy

Hi @southwest - it seems that the medication modafinil is actually discussed across Mayo Clinic Connect within different disease support groups. But you're right - it's not talked about related to Parkinson's.

One discussion you may be interested in reading is in the Sleep Health support group:

- MODAFINIL? Bad side effects, long term with usage of 400 mg./day? https://connect.mayoclinic.org/discussion/modafinal-bad-side-effects-long-term-with-usage-of-400-mg-day/

Will you share more about what your fatigue looks like and how it affects your daily living?

I have learned not to call it tiredness, because "tired" can be handled by resting; also it is not sleepiness, because "sleepy" can be handled by napping or sleeping.
What I call my fatigue does not go away with rest or sleep.
It's a deep, complete, fatigue, lack of energy and strength, with brain fog and slow movement to match. Tiredness and sleepiness too, but these are misleading words as I noted above. In fatigue, It takes me a long time to do anything, make a meal, walk across the room, take a shower, etc.
I have periods few and far between when the fatigue goes away, for a few hoursor maybe a day or two, and I have no idea why. Doctor doesn't either. I get the impression that while I have read some 60% of fPD patients have severe fatigue, the motor symptoms get all of the real attention and medical interest.
recently the Parkinson's doc really for the first time recognized my telling him about fatigue, and gave me some handouts. They give some coping tactics, but nothing about the source of fatigue, or how to medically treat it.
Earlier in my PD journey I would have immobilizing fatigue all morning, and some better hours in the early afternoon, and then slip into fatigue again. Currently, my best hours are early to mid morning, and by afternoon I have to lie down, I fall asleep, and after waking (average nap about an hour) I need a couple of hours to even feel halfway awake again.

@wkrebs59
The low BP issues (orthostatic hypotension) are a real limiting factor for me too. It is related to autonomic nervous system failure - a problem associated with many PD cases. I've never actually passed out, but come very close. Heat and humidity and a little dehydration bring it on. When I feel the familiar sensation of lightheadedness start - I sit down or bend over with my head towards my knees and the feeling subsides. The frequency of these episodes is lessened by the Midodrine my cardiologist and neurologist recommended. I take it 2 to 3 times daily and try to be very mindful with my fluid intake. I try to avoid any exertion in the heat and humidity of my home state of SC - exertion in the heat is a surefire trigger.

In reply to @bmfoster "The low BP issues are a real limiting factor for me too."
I went to my Primary Doctor yesterday and will follow up with my cardiologist when they get back with me. I am having bloodwork next week after a medicare physical I have to wait until after Friday which is when I go for a physical. My cardiologist has me on 10 mg 2x a day of Midodrine and 60 mg of Propranolol 2x because my heart rate increase over 200 at times. Passing out is a new thing for me. I feel I have been under stress since finding out I have Parkinson's along with the tremors and my husband has a travel job taking him away 4 months at a time. I know he is trying to get a job back here in Arizona but it's been difficult without him here. I have my son who has been a caregiver whenever I need him since he lives here with me but I worry he needs to start his own life but has been my angel. He also has a job so hopefully my husband will get a job soon. He does MRI with a mobile company and has applied to some of the hospitals in the Phoenix area and praying for a job soon so I will worry less about it. I have been increasing my fluids ( water ) and trying to sleep more but sleeping has been a big problem also for me.

@wkrebs59
yes it is stressful to be newly diagnosed, so it’s good you are aware of your stress and how it affects your feelings!
sounds like you are learning to cope; best wishes to you!

@wkrebs59
I'm sorry to hear you are struggling, but not surprised. These neurodegenerstive diseases require attention and learning to accept the reality of the situation. I work a 12 step program to help with the acceptance and get sound medical advice for the rest. However, you must be your own advocate too. Read and learn as much as you can and be an active part of your care team. Sending a hug your way.

I am finding the more I can learn the more determined I am to connect with others going through these conditions, so I know what to expect. I have been quite open with my care team and reaching for a specialist to help me understand the emotional aspect of this disease. Having the proper care and team to work through does sometimes take a while but I am on the right path ! Sharing and caring for others are also a needed part of the learning process! When I only thought I had Essential Tremors life was easy if the medication did it's job. Adding the Parkinson's with multi areas needing attention is a bit overwhelming at times. Double vision, Cardiac fluctuations causing passing out and now possible thyroid surgery has hit me in one week. I strongly believe we are not given more than we can handle. I agree the key is learning how to multi task all of these situations calmly. I am working on it with determination to gain just what my body is now requiring to fight these conditions. Challenging but not impossible. Thank you for your support and please share your story. My passion is to help others as I grow with this journey with Parkinson's and our experiences bring answers that benefit all that walk our walk. I did purchase the Parkinson's Protocol which gives great ideas on dealing with Parkinson's. The diet and exercise I have been doing most of my life the sleep is going to be the challenge to work it . I will look into the 12 step approach ! Thanks again

@southwest
I have the same issue and for sure the correct word is fatigue. Nothing seems to help. I could sleep 12 hours and still not wake refreshed. My sleep is poor quality, broken and light. I want to nap every minute of every day. Nothing so far has helped.

@southwest
The Michael J. Fox Foundation's webinar "Sleep and Parkinson's: What’s Going On (and What Can Help) is on March 19.