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notime

Stalwart
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Hi,

I couldn't afford to continue my health insurance policy so I had to drop it in as I had no more money to pay for it. I just got on medicaid not long ago. I talked to my neurologist the other day online. He discussed several options for me and asked me to consider different options.

I got down to 200mg of Lamictal as I was trying to get off since I couldn't afford it and the seizures returned 3-4 times a month. However, I noticed my memory improved by some 20%. I discussed this with him. I explained how I was tired of taking high dosage of drugs.

He discussed options.

He gave me couple of options.

1. He wanted to get Lamictal back up to 400mg before adding an extra drug. I will start Monday going back to 300mg and in a few months to 400mg and we'll go from there.
2. He wants to know how better my seizure improves.
3. He told me of other potential drugs like to take with Lamictal like Lorazepam or Topiramate. (Polytherapy). Starting at a low dosage.
4. He wanted me to do some life style changes.

Dr wanted me to 'improve' my life style and diet.

1. I should setup a specific sleep schedule and stick with it.
2. I'm way up there in weight over 250+lbs. Told me I need to go back to general physician to get my thyroid levels back up as I have hypothyroidism and didn't take medicine for months.
3. Stop drinking caffeine, no drinking alcohol (never did), don't smoke (never did, however around second hand smoke)
4. Exercise 30 minutes a day even if it's just walking outside.

The doctor explained from how I explained my sleeping schedule how not having a proper schedule despite how many hours isn't 'good' for my brain as it doesn't keep a regular schedule so my brain can trigger seizures or something. I should get a specific schedule, doesn't matter if it's 8pm to 6am or 2am to 10am as long as it remains the same. Explained to me at how my weight may dilute epilepsy drugs and I should lose 20 or 30lbs and I perhaps would get better treatment with lower dosage and it may treat my epilepsy just as good. "It's not foolproof, but it's a start and it's good for your overall health anyway." Said I should get my hypothyroidism back under control. I asked about what kind of diets, and he just said keep a low sugar and starch diet and try not to use much caffeine. I asked about apkins or ketogenic diet, he didn't want to do it because my cholesterol was high.

My memory improved, and I told him about this so he told me how me being obese may be one of the reasons I have to take higher dosage of Lamictal. He spent a good 30 minutes. I don't even remember that much. After getting to 400mg, he wants to see how my seizures are and then consider adding a drug like Lorazepam or Topirmate at a very low dosage to start and see where to go. Talked about "I should lose at least 30lbs" before being considered. He didn't want to even think about putting me on depakote due to me being way overweight.

Has anybody else talked to their Dr. like this? I never really heard of Topirmate or Lorazepam. I've seen the name, but I don't know anything about them. I am not asking about the chemistry. I don't know of the interactions either. As for the sleeping schedule, is it really true that irregular sleeping schedule regardless if it's 7 or 8 hours can be bad for it?

I am writing everything I eat down and counting the contents. I will try to begin to substitute bad food for better food over next month. For example, I love tacos, but apparently I can replace ground beef with ground turkey or ground chicken and switch from corn tortillas to whole grain. Replace cereal with eggs and some whole grain toast. I want to start out slow, if I do it instantly I grow tired of it... I've read countless weight loss forums and I don't know which one to stick with. "Whole grains, make own bread, eat brown rice instead of white rice (then it says high in starch).

Goal:

Eat better improve with time to do a life style change
Walk for 30 minutes a day 5 times a week
Lose 20 or 30lbs before being put on new medicine
Get regular sleeping schedule

Questions Summary:

1. What kind of diet should I go with? There's so much garbage out there that I can't figure out which one to stick with.
2. How do I set a specific schedule to sleep? I tried in the past, like one week I may sleep 9pm to 5am or another 12am to 8 am
3. Hypothyroidism, I keep reading that regular hypothyroidism like tsh is outdated and should be tested for T3 or T4 (no idea what these mean)
4. How well does Topirmate or Lorazepam work with Lamictal? Does it cause memory problems or are you on this combination?

Thanks to anybody that actually reads it all
 
hi Notime
I was also having issues with sleep, mainly not getting to sleep. Once I got to sleep I was ok. I tried to blame the meds and spoke to my neurologist about this in August.
He told me it wasn’t related to my meds but was more likely my sleep routine as I wasn’t getting bed until 11:30pm-12am most nights and on my days off I’d have a nap which meant I was having even more trouble sleeping
My neuro suggested trying to go to sleep earlier and the same time every night. He also suggested cutting out the naps for a nap to see if that helped.
I took his advice and only time I napped was if I had a seizure or headache and found if I tried napping any other time I couldn’t sleep.
I started going to bed at 10:30pm every night and listen to a meditation app on my iPad which my psychologist told me about. It has different techniques including ones for stress and sleep. Often the sleep ones help get me to sleep.

As for the diet in my opinion that’s a personal choice and something you might want to duscuss with your dr if you’re concerned.
In 2016 my cholesterol was high and I was overweight so my dr sent me to a dietician to help me get on track with my diet and teach me how to eat properly.
With the dieticians help I lost 30kg (about 60 pound) just by changing my diet, watching what I eat. Most of the staff I eat is sugar free and low in fat and it’s the way I cook it aswell by not using a lot of oil or fat. I do eat the odd sweet thing but not like I used to

i also walk a lot, just walking from work to home takes me 50 mins
 
Hello. Thankfully, sleep doesn't/hasn't affected my seizures.
I've always been a very deep sleeper & an early riser. I've usually kept a pretty set sleep routine. It really started a long time ago, when I was in high school & took extra classes so I had to get up at 5:30. I've never napped during the day. I'm so accustomed to the drowsiness that they warn of on AEDs that despite taking 900mg of them each day, I'm unaffected by it.
I only sleep about 6-6.5 hours--no matter how tired I am--and wake up fully refreshed. Sometimes I fall into such a deep sleep I'm up and wide awake ridiculously early.
 
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