I was diagnosed PD when i was 37, now I'm 46 years old. 5 months ago i was DBS. After surgery, things did not go bad, but not as good I have expected.
On March 7th i was reajusted the neurostimulator by my neourologist. On March 15th i started HDT Protocol, 50 mg sublingual on alternative days as initial dose. But on March 20th, i could not sleep and my symtoms worsened. I stopped B1 immediately. Since then, i cannot sleep, just a few hours at nigth. And I'm very depressive.
Currently I'm on levodopa/carbidopa, safinamide and opicapona.
Do you think It can be related with B1?
Or maybe DBS tunning?
Thanks for any advice.
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carlosgarcia2048
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While high doses of B1 are generally considered safe, taking high doses of a specific B-vitamin can potentially cause an imbalance in other B-vitamins in the body. This may also have negative effects on your PD, overall health, and possibly also your sleep problems. The different vitamins in a reasonably dosed B-complex or multivitamin may contribute to better sleep. Not only an imbalance and deficiency of various B-vitamins are often associated with disrupted sleep patterns, also deficiencies in melatonin, vitamin D, tryptophan, and magnesium.
Additionally, it is important to ensure an adequate intake of vitamin C to enhance the absorption of iron from your diet, and it is recommended to regularly test your vitamin B (don’t forget B6) and D levels. 🍀
Although you have previously highlighted the interaction between different B vitamins, such as B2 and B6, I won't delve into that further here in order to respect carlosgarcia2048's question and post. Therefore, I have written a new post where that can be discussed if desired.
I have been on 2.5g B1 for several years and my experience is that B1 taken after mid-day makes me restless at night. I now take 1.5g at 7am and 1g at 11am.
Unrelated to B1 I have started suffering from insomnia a few months ago and, after trying several things (see my previous post), I have started using medical cannabis (CBD and THC oil). This has helped recover my ability to sleep at night and has tremendously improved my quality of life. You might want to try it if it is legal where you are ( there are specialised clinics).
Suffering from insomnia I began taking a cannibus tincture and 1 dose contains CBD 25.7mg, CBN 8.3mg and THC 2.7mg. I began with .5 dose and increased to. .75 dose which is helping.
Hi Carlos, I've been lucky in that high dose B1 hasn't interfered with sleep. I was on it for about 9 months and had increases my dose up to 3000mg/day. I stopped my B1 therapy in January as I wasn't sure if was benefitting me.
I suffer insomnia for other reasons, probably a combination of Parkinson's, young children that don't sleep through night and financial/work-pressures.
My doctor prescribed melatonin, which has been a game changer. Now able to get to sleep more easily and less likely to wake through night (unless by my kids 🙂).
I'd recommend speaking to your medical practitioner about trying it.
4mg-6mg initially of 'Sustained release' formula. Was good at getting me to sleep, and 'sometimes' keeping me asleep. Problem was I'd often awaken at 1am-2am and struggle to get back to sleep.Just recently started combining 2mg-4mg sustained release at bedtime with 3mg standard release at 1am-2am if I wake up. Got this protocol from Laurie Mischley's Parkinson's School program and so far, so good. Seems to be working for me but only 3 days in, so watch this space...
I wish I could help 😭. Unfortunately, I don't have the same experience as you. I only take the basics. Like carbadopa levadopa. I do take thyroid meds. But that's it. I always had side effects from those other meds. Good luck!
I’ve had years of insomnia. Tried melatonin, tryptophan, no luck. But then I found “Simple Slumber”. By Biotiquest. Take it at bed time and it works! I wake up around midnight due to dystonia pain but can take my CL pill and sleep till morning. Got it on Prime. I also take Biotiquest Sugar Solution which works well to avoid constipation.
you could try clonazapam at a very low dose before bed. My husband takes this with melatonin. His comes ina 0.5 mg tablet and he takes half then the other quarters spread over the day. But you could start with 1/4 of a tablet and use as little as possible to get some relief.
People don’t like benzodiazepines due to them being addictive and them dulling their mind but he hasn’t suffered any ill effect at a very low level. It just seems to help with quietening the anxious thoughts which I think are due to problems in his GABA pathways.
I wonder if it’s like morphine for pain. You can take it without getting addicted so long as it’s just enough to balance the pain.
This is what helps me. Don't look at your phone or emails past 8:00. Stretch before bed.I take 5htp 100mg and Lithium Oratate 5mg.They both help with sleep and depression. I also take L‐Tryptophan.
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#1 Symptom Reducer
DBS and/or duodopa pump
Frustration with Attempts to Use the B1 Protocol
B1 - a little confused 
