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Sleep meds and parkinsons

My MIL is 84 years old and sleeping 2-3 hours at a time throughout the night. She doesn't act out her dreams, have RLS, or tremors, no typical parkinsons symptoms at night, she just cannot STAY asleep for more than a couple of hours at a time. People recommend benadryl (diphenhydramine), but it's a short-term fix not to be used long-term and shouldn't be used in parkinsons patients. Melatonin is a hormone that the brain makes naturally- again, should be used as a short-term fix (per the mayo clinic) that could be more harmful than helpful if used regularly. She was on Trazadone for years, it does nothing anymore. She also battles daytime drowsiness (probably in part due to not sleeping at night) and increased confusion/ cognitive issues. She wanted a sleeping pill, so we asked her primary care doc who prescribed gabapentin at 300 mg at night. That would definitely make her sleep!! I wanted her neurologist to sign off because I was worried about that med at that dosage increasing both drowsiness and confusion- she gave me no answer regarding the gabapentin, but did refuse to prescribe Ambien, instead insisting on a sleep study. Here's where I feel the world has gone mad. Ambien was created to kick in fast, to put the person asleep quickly, then be out of the system when they woke so there isn't a hangover (Am-bien =morning-good). It also makes it very difficult to abuse. The mayo clinic doesn't consider it addictive- kids have to smoke and snort ridiculous amounts to feel a modest high. I assure everyone, this is not how my MIL takes her meds. Now, drug rehab places call Ambien "addictive", but they also call clonidine, a blood pressure med, addictive. They consider gabapentin a "drug of high abuse" and liken the withdrawal to that of benzos and alcohol, the only two drugs you can die from detoxing from. I take gabapentin 300 mg TID, and I will say I'm DEPENDANT on it. It feels like missing an opiate dose; anxiety, skin crawling, pain. So, her primary care doc and neuro were both fine w making her dependent on a new med w increased side effects, but an Ambien.... Now I have to first convince an octogenarian to GET the sleep study, then, in the middle of winter, bundle her up and take her to a strange place where they cover her w wires and leave her w strangers so she can be scared and disoriented and NOT SLEEP and we can find out she has Parkinson's messing w her sleep cycle and she needs a flipping...... Ambien. Is this really worth it, making an 84 year old cripple woman jump thru all these hoops for a med that's not even addictive? Doesn't even cause dependance? Even if it did cause dependance, is that a bad thing? She's dependent on her Sinimet, and her heart pills, and now she's on gabapentin too (100 mg). Addiction does not equal dependence. Dependence is not necessarily a bad thing. We need to reclaim the words, the sanity. It's lost right now...

  1. Is there the possibility of getting a second opinion as to the best recourse to get your mother some relief? A fresh perspective may be needed. I wish you luck in getting
    your mother a solution to a difficult situation. Please let us know the outcome. We care about her. Thea DeStephano Community Team Member

    1. Thank you for your support. I would love to get a second opinion, or a new neurologist, but my MIL (thankfully, in some ways, lol) is much more agreeable than I am and is hesitant to end a doctor-patient relationship without "just cause". It's tough, advocating for her, yet staying back and honoring her wishes even when I feel they may be detrimental to her. If it ever gets too bad, trust and believe, I will advocate my heart out and find her a new doc. Interestingly, we did try 100 mg of the gabapentin, and while it hasn't helped her stay asleep, it's done something positive. She's not needing help anywhere near as much during the day, and even the mornings and evenings she's been stronger and more alert. But, it's not from sleeping more.... Right now, we'll take it!!! Weird stuff for sure!!!!!

      1. Hello, I'm glad that your MIL is doing better. I'm glad Thea D. was able to give you some suggestions. I thought I would also chime in as my father dealt with similar issues as your MIL. I believe he was on Gabapentin also for awhile. I did not find his neurologist to be perfect. It is hard to find a good one. I think it helps to improve on the relationship with the doctor office as much as you can. It helps to build trust with the staff. I found messaging the nurse(s) thru mychart to be helpful. Other tips that they would give me would be try and limit day time naps to a minimum to help increase nighttime wakefulness. I wish you the best with your MIL. Suzanne Troy, team member

    2. Suzanne Troy I agree completely. My chart has proven to be an invaluable tool and I h.ave built a strong rapport with the Movement Clinic Staff. Answers are always prompt and thorough. Taking advantage of what we have available is an excellent step towards self advocacy. Thea

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