so very tired and it isn't getting better

[robertmarilyn]

I'm here to update what has been going on since I last peeked into the forum. I've started a new therapy and wanted to see how it went without over thinking it like I'm prone to do. (Understatement of my life.)

Based on the sleep deprived EEG my neurologist thinks I am having mini-seizures and I have now been on Lamicatal XR (Lamotrigine extended release) for 6 weeks. The dose started at 50mgs and I'm now at 200mgs with the projected final dosage to be 300mgs in about a month. So far I have experienced no side effects with this medicine.

I waited six weeks to talk about how I am feeling on the medicine because I wanted to have time for any wishful thinking placebo effect to wind itself down if there was any of that influencing how I felt. Now that I have been on the medicine for six weeks I can definitely say that I am feeling much better. I actually sleep about 8 hours each night soundly. No sudden jolts causing me to wake up numerous times per hour. I am not using an alarm so my time in bed is not affected my an alarm going off to wake me up. The really nice thing about getting up after about 8 hours sleep is that I feel like getting up and I feel like doing things. I haven't felt the need for naps since I have been on the medicine and I don't have to fight to stay awake (a battle I lost in the past) when I am a passenger in a car.

I haven't gotten back to the activity level that I was at a few years ago. This past year has seen a big decline in my fitness level because of how tired I felt. But I have been exercising lightly on a program that includes gradual increases as I see that my body is ready to do more. Before the doctor has me move up to a higher dose than 200mgs I will be having blood drawn so he can check my blood levels. Blood levels are monitored over time with this medicine to make sure the dose isn't too high.

At this point I'm not seeing the sleep doctor. At some point I will have another sleep deprived EEG to compare to the one that I did before I started taking this medicine. The doctor thinks there is a good chance that I am having these mini-seizures during the day time also but my husband and I haven't noticed any signs of me doing so. I've never had convulsions and the only outward sign of anything happening is that I wake with a jolt throughout the night (when I wasn't taking the medicine).

mar (so far so good)

[Muse-Inc]

Sounds good Mar! Hope your sleep continues to improve. Come back now & then and tell us how you're doing.

[-SWS]

Now that I have been on the medicine for six weeks I can definitely say that I am feeling much better. I actually sleep about 8 hours each night soundly. No sudden jolts causing me to wake up numerous times per hour.

That is nothing short of beautiful work by you, your husband, and a great doctor!

I haven't gotten back to the activity level that I was at a few years ago. This past year has seen a big decline in my fitness level because of how tired I felt. But I have been exercising lightly on a program that includes gradual increases as I see that my body is ready to do more.

And the perfect get-back-in-the-saddle plan!

The doctor thinks there is a good chance that I am having these mini-seizures during the day time also but my husband and I haven't noticed any signs of me doing so.

Hard to spot---those petit mal seizures can sometimes be. There are plenty on YouTube if you and your husband would like see what some of the more difficult-to-spot ones look like:
https://www.youtube.com/watch?v=xE6N0Da8Ce0
(several here, but the easiest to spot is probably that one near the end)

mar (so far so good)

WOOHOO!

[Muffy]

Hard to spot---those petit mal seizures can sometimes be. There are plenty on YouTube if you and your husband would like see what some of the more difficult-to-spot ones look like:

A seizure that looked like that



on eyeball would look like this:



on EEG, so while I would continue to debate exactly what and from where those "mini-seizures" come from and if they are truly the cause of that horrible sleep architecture, I certainly won't argue with positive results.

Good to hear from you, mar, and glad you're doing better.

Muffy

[DoriC]

Mar, so glad you're doing better and enjoying some quality sleep. Keep us posted. Regards, Dori

[-SWS]

A seizure that looked like that

on eyeball would look like this:

Yes, I agree with that. There we have an example of absence seizures that would in all likelihood present a very frank EEG seizure-appearing presentation---and yet those much more EEG-frank absence seizures would be difficult for Mar's husband to spot.

on EEG, so while I would continue to debate exactly what and from where those "mini-seizures" come from and if they are truly the cause of that horrible sleep architecture

Debate? You know we don't like that kind of thing on this message board. Hmmmph... to rationally submit a perfectly legitimate contrasting analytical view... The audacity!

But on a serious note, I think if Mar had presented any frank EEG evidence of "seizures" that her neurologist would have very easily identified it as such and began the Lamicatal XR trial earlier. By suspecting "mini seizures" with extremely subtle EEG waveforms like Mar's, I kind of suspect Mar's neurologist finds herself in a theoretical realm---more so than if she had been working with a common presentation. Mar's has to be a tough case for even great doctors.

And regardless of whether those really are time-domain or frequency-domain subtle "mini seizures" or "micro seizures" or something else, this is the ultimate outcome under any circumstances:

positive results.

I wouldn't be surprised if Mar's neurologist and colleagues engage in academic-debating bliss during lunch for years to come about Mar's happy outcome.


WOOHOO MAR!!!

[BleepingBeauty]

I'm here to update what has been going on since I last peeked into the forum.
<snip>

mar (so far so good)

Yay! I'm SO happy for you, mar, and hope that you're (literally) back in the saddle very soon.

Do keep us posted on your progress. Your CPAPtalk family cares about you.

[Muffy]

Hey mar, before you go:

Have you been using CPAP all this time, or have you stopped?

Are you still taking pseudoephedrine?

Muffy

[robertmarilyn]

Hey mar, before you go:
Have you been using CPAP all this time, or have you stopped?
Are you still taking pseudoephedrine?
Muffy

Hi Muffy,

I haven't used the CPAP since Sept 15. With the cessation of the CPAP, I have had no aerophagia, acid reflux, or contact dermatitis. And even though my sleep was not good until I started taking the Lamictal XR it was much improved over trying to sleep with the CPAP. (Disclaimer: I would not want anyone to make a decision to stop using CPAP based on what has worked for me. I know most of you on this forum understand how important this message is but I would not want a newcomer to use my post as an excuse to not continue trying to resolve CPAP issues.)

I'm have continued to take Allegra D, Singular, and Pristiq. I guess there could be even more room for improvement if I stop taking the pseudoephedrine. I see my internal medicine doctor in Jan because she is following up closely on my change from Zoloft to Pristiq. I will ask her to prescribe a different allergy medicine to replace Allegra D. Of my sleep doctor, neurologist, and internal medicine doctor, my IM doctor has been the one that has mentioned that some of my meds might interfere with REM sleep. That is one reason she wanted to follow me closely on the Pristiq.

I plan to keep visiting the forum because I have made some friends here. My absence from the forum was based on the fact that I was trying to let the new medicine work for me (if it was going to work) without mucking things up by thinking too much. I know -SWS knows what I mean...I can be my own worst enemy at times by over thinking. So I started taking the medicine, after acquainting myself with the side effects (at my doctors urging) and then not telling anyone that I was on this new medicine (except my husband who already knew I was taking it). It seems like I have tried so many things and they haven't worked out. That was very discouraging over time and I definitely felt like I was banging my head against a brick wall.

Also, I if this medicine continues to work for me, I want you that I have become friends with, to know it has continued to work.

mar

[robertmarilyn]

Hard to spot---those petit mal seizures can sometimes be. There are plenty on YouTube if you and your husband would like see what some of the more difficult-to-spot ones look like:
https://www.youtube.com/watch?v=xE6N0Da8Ce0
(several here, but the easiest to spot is probably that one near the end)

What a beautiful little girl. I can see why most people would not be able to detect a seizure happening unless they knew what to look for. I showed this to my husband. He doesn't remember seeing me exhibit those symptoms but now that he is aware of what they look like, he will watch for them.
mar

[robertmarilyn]

BB and Dori and others,
I'll keep you posted.
mar

[Muse-Inc]

Had a friend with this type of mini seizure...Dwight would just pause and stare for a second (shorter than the cute little one in the video) as if he were seaching for a memory or fact and then resume the conversation almost without interruption (I and others have longer pauses but not the staring so it seems normal). If I didn't learn later what it was, I would never have known; he had other problems from a head injury in Viet Nam that compromised his sleep and behavior.

[robertmarilyn]

Had a friend with this type of mini seizure...Dwight would just pause and stare for a second (shorter than the cute little one in the video) as if he were seaching for a memory or fact and then resume the conversation almost without interruption (I and others have longer pauses but not the staring so it seems normal). If I didn't learn later what it was, I would never have known; he had other problems from a head injury in Viet Nam that compromised his sleep and behavior.

I guess there is a chance the mini seizures were caused by his head injury, unless he already had them before the injury. The tape that -SWS posted was very interesting. The comments by people who watched the tape showed that a lot of folks who watched it didn't know when she was experiencing events.
mar

[Muffy]

I haven't used the CPAP since Sept 15. With the cessation of the CPAP, I have had no aerophagia, acid reflux, or contact dermatitis. And even though my sleep was not good until I started taking the Lamictal XR it was much improved over trying to sleep with the CPAP. (Disclaimer: I would not want anyone to make a decision to stop using CPAP based on what has worked for me. I know most of you on this forum understand how important this message is but I would not want a newcomer to use my post as an excuse to not continue trying to resolve CPAP issues.)

Right.

But if they read your entire saga (which is 13 on the All Time Threads List) they should get to this page:

viewtopic.php?f=1&t=41490&st=0&sk=t&sd=a&start=285

where it is argued that there may not have even been a need for CPAP.

For those in the Secret Society of Conspiracy Theorists, that might also explain the inability to obtain prior test results.

We should have used the Dillon.

And no, it wasn't just Oswald.

Muffy

[robertmarilyn]

But if they read your entire saga (which is 13 on the All Time Threads List) they should get to this page:
viewtopic.php?f=1&t=41490&st=0&sk=t&sd=a&start=285
where it is argued that there may not have even been a need for CPAP.
For those in the Secret Society of Conspiracy Theorists, that might also explain the inability to obtain prior test results.
We should have used the Dillon.
And no, it wasn't just Oswald.
Muffy

Exactly...he knows why he isn't giving out any test results. I bet those "tapes have been erased" ala Nixon. I think his new tech who told me he always starts new patients out on a pressure of 14 was telling it like it is (even though she wasn't supposed to have said that)...I was hoping she was mistaken.
mar