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Originally Posted by murgir
I have only told a few people about this because occasionally I still cry when asked how I am doing and I am not a crier. It makes me mad at myself. I too am very independent and have had the same job for 32 years. It makes me so mad that I would love to work another 8 years but at the rate I am going I give it 6 months. I have seen so many trying to get disability that don't need it and it will take me probably 2 years to get it with this disease. Either the neurontin or this disease has caused worsing brain fog. I am really scared and don't like talking about it. I just act like I am normal to everyone because I really don't want every conversation to be about my health. Every second I can keep my mind off it the better I feel.
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Hi Murgir,
I was wondering if you have talked to your doctor about the brain fog? I ask because that is a huge issue for me as well. When I spoke with my doctors about this they offered tips on how to dose the Gabapentin in a way where most of the medication was hitting me during the evening/overnight hours so that I could be more alert during the day. For instance - if you are taking a regular dose 3x per day, you could ask about taking it only morning and night by doubling up on the evening dose. Also, depending on how long you have been on it and how high your dose is, you could also ask about stepping down the dose amount to see if you can think more clearly and still gain the benefits. I had noticed that I wasn't getting much benefit from Gaba after the first 6 months and so we decreased it and then after a little over a year we dropped it completely.
Many of the medications cause these brain fog or cloudy thinking as dose pain & lack of sleep. It helped my doctors and I to keep a detailed list of all the medications time of dosing and side effects so that during follow-up appointments we could easily see how to adjust timing/dosing or even adding/changing/eliminating meds based on the combination of side effects. When the side effects outweigh the benefits it might be time to consider something different.
I think most would agree that there are many reasons we have brain fog - for me lack of sleep was really wreaking havoc on my brain!! My doctor had me put a counter on my nightstand so we could see how often I was waking up.. this showed us that in a 5 hour time span I was waking up between 16-22 times. No wonder.. I couldn't focus :/ Now we are working together to try to figure out how I can get better sleep. Trying everything from a different mattress, taking evening meds earlier instead of just before bed, meditation in the evening etc., hopefully we figure out something. My point is.. sometimes it is not just one thing causing the 'fog' and if one area is improved then it might make all the difference in the world.
You are very strong!! I hope you are able to continue doing what you love for as long as you desire. Is it possible that your employer would allow for additional breaks so that when your brain is getting the best of you that you could take a 10-15 minute break? Maybe doing that would help?
Wishing you a better day,
Tessa