INSOMNIA
What is safe and effective for insomnia. I have generalized M.G.,double vision and breathing issues. On bi-pap recently after study. Sleep neurologist refuses to prescribe anything. Feel it compromises breathing further. I also have fibromyalgia. I hardly sleep at all and feel totally dysfunctional and depressed. Currently do not have a doctor. Appt. on Dec. 23rd with a neuro-muscular specialist over 200 mi. from my small town in Northern WI. I only take Pyrodostigmine and it isn't working well for M.G. symptoms.
I hope you are improving under the care of a neuro muscular neurologist. Nothing helps MG like lots of good sleep. Not being able to sleep is a tragic complication. You mentioned that you are in Northern Wisconsin. I would just like to say I have a wonderful young neurologist who practices in Duluth, so he is probably much closer. He interned at Iowa University Medical Center where he was in charge of the neuromuscular unit and treated dozens of MG sufferers. Dr. Stephen Rostad. Best doctor I have ever had.
I will second that. Dr. Rostad is great.
I have struggled with insomia for years! I am taking 12.5 mg of Zolpidem on n empty stomach for the third time in five years. I was diagnosed in 1961. At gae 74, I have undergone a thymectomy, plasma pheresus. all of the infusions identified, blood transfusions, at least five different meds. I am currently taking 60 mg. of mestinon every four hours and 10 mg of prednisone
Additionally, I am a two-time survivor of breast cancer, overcame nine major depressions- one forced me to esign from my job with a Ph.D. for almost a year, I was literally homeless, and a single parent of a 12-year-old son. In the past 25 years, I have undergone ,right rotator cuff and six lower back surgeries-one of which the surgeon touched the wrong nerve which resulted in a shortened right leg (1 inch) and a right foot drop. I can no longer drive. I have had both knees and left hip replaced. I have exxperienced pneumonia which required a teo-week hospital stay in July '24. I currently struggle with rheumatoid arthritis, Type ll Diabetes, congestive and heart failure and a blocked right artery in my heart.
I give our Omnipresnt, Omnipotent and Omniscient God the glory and praise for miraculously blesssing me to still live independently!!!
I'm really sorry to hear about the struggles you're facing with insomnia. Since you have an appointment with a neuro-muscular specialist soon, please express your concerns and experiences during that visit. They might have insights or alternative approaches to address your sleep issues and manage your MG symptoms. Although many sleep medications, including melatonin, are suggested against using with MG, here are two articles with some suggestions that you might want to check out before your appointment: https://pmc.ncbi.nlm.nih.gov/articles/PMC10557457/ & https://psychiatryonline.org/doi/10.1176/appi.neuropsych.18120383.
Jodi, Team MemberThank you Jodi. Most helpful information. Tried Trazadone and Ramelteon. Need to look at dosage amounts. Did not help. Tried Zolpidem and Zopiclone. Get minimal amount of sleep. Now with bi-pap more concerns with breathing. Had sleep issues with the Fibromyalgia before MG diagnosis. Only got worse. Only on Pyridostigmine now. Do not want to add steroids due to osteoporosis diagnosis and the insomnia. Hope to get some much needed help in a couple of weeks when I see the Neuro-Muscular specialist. Only 1 hour appt. initially and traveling almost 200 mi. Thinking of moving to larger city closer to medical doctors and family. Depression hit hard now.
Hi
, sorry to hear you battling all these symptoms. Many in our community mention dealing with sleep issues. I shared an article on the topic here - https://myasthenia-gravis.com/clinical/sleep-disorders. I also included an article written by one of our amazing patient advocates, and her experience with insomnia - https://myasthenia-gravis.com/living/insomnia-experience. I hope your upcoming appointment proves helpful at creating a plan that will help you get some more quality rest. Please feel free to check back in and let us know how the appointment goes. Kindly, Jessica (Team Member)
