Constructive Ways to Deal with Extreme Fatigue

In My Humble Opinion
1

I’m at my wit’s end and need any advice you can throw my way.

I had three grand mal seizures on March 21st and was diagnosed with epilepsy and placed on an anti-convulsant called Keppra. I’ve spoken with my neurologist and Keppra is really my only option due to insurance. I had to quit Wellbutrin (anti-depressant) cold turkey because it is known for lowering seizure threshold and all of my seizure incidents occurred while I was on it. The problem is two major side effects of Keppra are suicidal depression and intense fatigue.

So in order to control the severe depression that resulted, I went on Seroquel, which also has a side effect of… wait for it… intense fatigue.

Well the depression and anxiety has improved quite a bit, and I haven’t had any seizures, but I am tired all the damned time. I’ve had depression-related fatigue before but this is a whole different beast. For one thing, I’m not depressed, so on any give day I have a stack of items on my to-do list that I really, REALLY want to get done. The problem is I don’t have any fucking energy. My alarm goes off at 9am, I take my Keppra, and I immediately want to go back to sleep.

I have a part-time job as a grant writer, and I am only now getting caught up. This week is the second week I’ve been able to put in the full 20 hours, but every hour is a struggle. I have permission to nap at work but lately, even napping isn’t doing anything. I also have a full plate of other responsibilities besides the part-time job, as I manage all the household stuff and I’m working on launching a career as a fiction writer and aiming to put 20 hours a week into that. Right now my brain shuts down pretty consistently in the afternoon regardless of what I’m doing. The closest I can compare it to is being drunk. I can’t think effectively, I’ll read the same thing over and over but it won’t make any sense, and my speech patterns skew toward the bizarre until I go to sleep for a while. Right now I only have to go into the office physically one time per week, but I can’t even make it through a full day. Monday I crashed after 3.5 hours in the office.

I’ve tried caffeine (which has a horrible effect on my physiologically but I’ve become utterly dependent on it at times just to function.) Prior to going on these meds I was super sensitive to caffeine, couldn’t take it after 3pm or I couldn’t fall asleep that night. Now it works to keep me alert for maybe an hour before I crash anyway.

I’ve tried taking brisk walks whenever I want to nap. Helps in the moment but, like caffeine, there’s always a crash afterward.

The only thing with any hope of helping seems to be napping, but I don’t know that 1-2 hours of napping a day is realistic given how much I have to get done. I lose so much time.

The summer isn’t helping, because I’m allergic to the sun, and the sun drains my energy. Ditto the heat/humidity.

Changing medications is not currently an option. I’ve tried a number of psychotropic meds in the past so I know what works and what doesn’t, and Seroquel is one of the few things that works. I saw my psychiatrist this week and he told me to stick with it and the fatigue should improve eventually.

In the meantime I’m exhausted and frustrated and I’ve got shit to do.

I will take literally any suggestion at this point.

Thanks.

2

I don’t have any specific advice for your condition, but were I you, I’d be looking at online groups / forums / facebook pages for folks on the same drugs you are on. If fatigue is a common symptom, chances are those folks will have dealt with it, and can give you some pointers that directly relate to what you’re going through.

3

Seroquel is awful stuff. You should get used to it and the fatigue will reduce, but it’s anti-depression qualities may reduce also. There’s really nothing all that good at treating depression, lucky people find something that works without serious side effects. I don’t know if your condition would allow a stimulant like methylphenidate, but you should talk to your doctor about alternatives. I hope you can find something to deal with this, I went through this with medications before and I was lucky enough not to need all that stuff forever. I really hope you’ll get to a point where this isn’t a problem for you. I can’t offer much advice, but I found seroquel so fatiguing I was got down to just 1/2 of the smallest pill which might have been only about 25mg, so half of one of those. Huge doses are given to some people but maybe you can get by with much less, or find some alternative. Also, have your doctor keep an eye on all your blood chemistry, the secondary effects of my problems and the medications turned out to be the bigger problems.

4

I had three grand mals in 2013 – most likely caused by the satanic Tramadol, which I was taking for torn tendons in my foot.

I’m really sorry you’re going through this. Seizures knock the hell outta you, then the meds can be even worse.

I’ve been taking the anti-seizure drug Lamictal since then and it totally zaps my energy (and therefore, my initiative to get things done). Just this morning I was lying in bed and thinking about how tired-to-the-bone I felt.

I’m able to drink caffeine, so I usually drink one or two Red Bulls and/or Monster Energy large cans. This doesn’t sound like a good option for you, though.

The other thing I do is chew nicotine gum. I don’t smoke, but it helps with getting motivated and clears out some of the brain spiderwebs.* I know this can come with a whole other set of issues, but I’d rather be up and around than languishing on the couch all day. Your mileage, of course, may vary.

*There’s also some tentative research that nicotine can help stave of Alzheimer’s. AD runs rampant on both sides of my family, so it’s at least worth a shot.

5

Just to add: though I’ve been seizure free for three years I take Lamictal because two of my siblings have epilepsy and, if my seizures weren’t actually provoked by the Tramadol, I may have late-onset epilepsy.

I have a friend with epilepsy who takes a low dose of (prescribed) Adderall, which helps with energy and motivation. However, Adderall and its related drugs can also lower a seizure threshold.

And stay away from Tramadol. Nasty shit!

6

I was on Seroquel for a long time before the Wellbutrin. Wellbutrin was like my miracle drug before the seizures. I can’t remember why I stopped taking Seroquel. I can tell you it’s exactly what I need right now because after the seizures I regressed like 10 years psychologically and had severe PTSD in addition to suicidal despair. Seroquel functions as a mood stabilizer and an atypical antipsychotic so it locks that shit up fast. I haven’t had suicidal depression in nearly a month now, since I went on it, and my use of Ativan to control my anxiety has decreased significantly. The only real source of psychological pain for me right now is the disparity between what I want to accomplish and what I’m able to accomplish because of the fatigue.

I will need it forever. That’s just my reality. One of the dumbest thing I ever did was try to go med free during my pregnancy in 2014 (that resulted in miscarriage), the depression that followed nearly destroyed my marriage and my life. I had gone back on meds and was just starting to get my psychological shit together again when the seizures struck.

7

If you have seizures while taking Wellbutrin or Tramadol, wouldn’t the remedy of first resort be to simply stop taking that drug and hope the seizures don’t happen any more?

8

When you have three seizures in one day, and two of them are consecutive, they don’t give you the benefit of a doubt any more because cluster seizures can fucking kill you. My brain went without oxygen for a good 3-5 minutes twice in one day. I dropped in the middle of work and they had to haul me away in an ambulance, completely out of it. It was actually kind of funny, I was on the phone with the pharmacist having just arrived back from the hospital when I had my third seizure and that’s when they decided to keep me for a couple of days in observation.

When I had my first seizure back in 2013 they didn’t even call it a seizure, they didn’t remove me from meds, they didn’t tell me not to drive, nothing. But have a cluster seizure and spend three days in the hospital and suddenly you gotta do everything in your power to prevent it from happening again. Including drinking. My neurologist told me never to drink again. And I am banned from driving for six months.

So the short answer is it’s too serious to risk. If I can go 3 years or so without any seizures they will probably pull me off the Keppra.

9

Also, FWIW, my neurologist doesn’t think the meds caused the seizures (though they do lower seizure threshold.) He thinks childhood head trauma caused the seizures and the meds were just one factor in a lower seizure threshold. I also had acute renal failure when I was admitted to the hospital and a false positive for ecstasy so I have no fucking clue and neither do they. Welcome to the world of epilepsy.

10

Spice Weasel, I don’t have anything really constructive to suggest but just really want to extend my sympathy because you’re having such a rough trot. Truly, deeply, sincerely hope there are good things ahead.

I recognise the afternoon “drunk” feeling you describe as brain fog. It’s a common symptom among people who suffer fatigue conditions. Perhaps you might find some helpful coping strategies from folks on sites dedicated to supporting those with multiple sclerosis, chronic fatigue syndrome, fibromyalgia, etc.

11

I’m sorry you are going through such a hard time, Spice Weasel. I was prescribed seroquel as a sleeping tablet by my psychiatrist a few years ago. I had to break the tablets in half before I took them because they were slow release and breaking them made them not so. Once they kicked in I was ravenous and once i’d eaten I fell asleep for a good 6-7 hours.

Don’t really have an answer for you but thought I’d check to see if you are taking them whole or broken? Don’t break them unless your doctor has told you to, but perhaps if you are breaking them, taking a smaller dose and therefore a whole tablet might assist.

Wishing you the best of luck getting this sorted out

12

ditto this. One drug gives you seizures, why take some other drugs with horrible side effects when the obvious solution is to just stop taking the drug that induced the seizures? You sound miserable and totally non-functional. Have you ever had seizures before taking the Wellbutrin? I’m guessing not.

13

I may be talking out of the wrong end, but see if you can come up with a workable sleeping/napping pattern rather than fight it. It’s what’s worked best for several people I know who were very fatigued due to meds or diet changes. There are people whose natural sleeping pattern is in two four-hour chunks, for example, and I know someone who has for decades taken a long nap after lunch and a small one shortly before dinner.

It’s the summer, after lunch naps are Traditional in large parts of the world…

14

You probably won’t like this suggestion, but here goes:

Be kind and patient with yourself. You’re going through a lot, with the new meds. It’s going to take longer to adjust. That’s why you can’t drive for six months. If you need a siesta - take one. Maybe this is not the time to start a fiction writing career. You wouldn’t push someone else in your shoes. Show yourself the same patience and concern you’d show if a coworker was going through this.

Take care.

15

Talking to other epilepsy patients is probably your best bet, they would know more. Have you looked into modafinil? I do not know if that is contraindicated for epilepsy or not. Modafinil also has antidepressant properties.

16

I’m sorry, I thought I already explained why that’s not a good idea.

To reiterate, being deprived of oxygen for long periods of time can cause permanent brain damage or death in the case of cascading seizures. I don’t even remember what happened a full month before and month after having three grand mals in one day. In addition to memory loss I apparently lost 10 years of psychological progress, and it has been a grueling recovery. The meds suck, but seizures suck more. All four of them (the first in 2013) happened with no warning whatsoever, I just woke up on the floor five minutes later with no clue who I was or what was happening. I was lucky enough all four times to be surrounded by people. The first time I was on a hiking trip and if my husband hadn’t turned and caught me at just that moment, I would have faceplanted down wood plank steps.

After what I went through, that’s kind of like saying, ‘‘Well, you had a heart attack that was probably caused by these meds so let’s just take you off these meds and hope you don’t have a heart attack again.’’ What do you think’s going to happen if I’m at the wheel of a car and lose consciousness unexpectedly for 3-5 minutes? Is that worth the risk of ‘‘wait and see’’ to you?

Add to the fact it was my second hospital stint in the space of six months and it was fucking expensive ($4,000 after insurance) and I’d rather not take any chances. Also, considering I know nothing about epilepsy, I’m more inclined to listen to the three neurologists who think I should be on an anti-convulsant and who don’t believe the meds caused the seizures.

I got through 6 hours of work Monday and a full game of D&D Monday night. I have one potential plan. I usually enjoy a brief period of lucidity before I have to take my 9am Keppra, so I was thinking, maybe get up at 6am and work from 6am-9am while I’m at my most lucid. Ditto 6-9pm at night since I take them on a 9 to 9 schedule.

Either way I’m going to start keeping a log, what time I start to feel tired, what I do about it and whether or not it helps. It’s a start.

17

This, this, a thousand times this. Just take it slow until your body adjusts to its new normal. Instead of writing fiction 20 hours a week, try an hour or two a day. Rest when you need to. **Nava **had a good idea about finding a workable sleep/work schedule–that might help you adjust to the side effects.

In short, be good to you. You deserve it.

18

You know what’s weird? I’ve been a lifetime proponent of mental health advocacy and openness to erase the stigma of mental illness. I feel ashamed of some of my past actions, but I don’t feel shame for having mental illness. I don’t feel ashamed of the real limitations I’ve had because of it at times.

But I feel ashamed about this.

I cannot explain to you why. Maybe because it actually decreases my cognitive capacity and I have pinned so much of my identity on my ability to solve problems and think strategically. I need to get over it somehow.

19

Are you keeping properly hydrated? I didn’t see any mention of it above, which might mean its either not a problem, or it could mean you’re neglecting it.

Being hydrated won’t fix all your problems, but being dehydrated will make many of them worse.

20

If the fatigue is hampering your life, you may want to push with the doctor for another option. Did he give you a timeline for how long he wants you to stick with it?

As always, my dear, be kind to yourself. I would keep a list of what you ARE able to accomplish on a daily basis rather than stressing over the load of laundry that didn’t get done.

Is getting some housekeeping help an option?