Why am I still getting so tired?

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I'm not having much luck, jen. I reached a point today where I just seemed to be incapable of doing anything--I just froze and my head was full of cotton wool. I had all kinds of people demanding stuff of me in one moment. I don't know how everything managed to happen all at the same time. I just gave everyone what they wanted because I couldn't understand what was going on. I guess I'll have to deal with the consequences tomorrow. I can't cope with looking into what sort of workload I've accepted right now. At the moment (18:00) I've gotten all hyper emotional. I guess I'll have to call my psychiatrist tomorrow. She said if things got out of hand she was going to take over my care. I think that's a good idea. She was looking after me before November last year and I never got into this kind of state when she was in control of my AEDs. So I'm done with this process. It's already taken five months and I still don't have my life back. I can't do it anymore. I'm really angry with my neuro right now. I have to give up and tell my psych I need help.

Kindling is what happens when seizures become self perpetuating. My psych says epileptic seizures always perpetuate more seizures. I think it was Nak who explained it so well, so hopefully she'll come back to this thread and explain it better. Or maybe it was Cinnabar. Can't remember.
 
"Giving up" would be if you decided to dump your neurologist, fire your psychiatrist, quit your job and hole up in your home all day, and that is exactly what many people would have done. Telling your psych you need help is NOT giving up! What you have done is identify the best way to help yourself get better. That to me shows clear thinking. Pat yourself on the back for being able to decide, in such a difficult time, on a positive course of action. Hang in there, and keep in touch!
 
I didn't have much luck with my psych yesterday when I called. Now she claims she doesn't want to interfere with what my neuro is doing with my meds, so she's asked me to call him. So I did that, and it's back to the waiting game, where my neuro never phones no matter how many reminders I leave. It usually takes a week to get him to call back.
 
I'm so sorry you are going through this! I used to have a neurologist like that - never calling back for a week or two. After a while he introduced email, with the "guarantee" of a response within 24 hours. . . try more like 4 or 5 days! Since then I've switched to a new neuro. who has a nurse return calls within 24 hours, and we go from there. As an alternative, can you go to the nearest emergency room? They will likely have better luck than you getting a prompt response from your neuro, esp. if you go there during his regular office hours. I'm surprised your psychiatrist didn't call the neuro. so she would know doctor to doctor what your neuro. is thinking. If your neuro. doesn't call you back in a couple of days can you talk to the psych. and say you can't get your neuro. to call you back?? Maybe she would help.
 
I can't do the ER thing because if I did, I'd have to go under a different neuro, which would really complicate the issue (medical aid has network docs and network hospitals and their neurology coverage doesn't intersect, so if you need a neuro ward, you have to use a different neuro. And if you need outpatient care, you can't see the hospital neuro. Pathetic.) I was disappointed in my psych when I called. I thought she'd be more proactive. I've gone through my available network neuros and have found one in my area, so I'm strongly considering changing over. For the moment, until I'm finished with the meds change, I'll do as you suggest and call my psych on Tuesday if the neuro hasn't called back by then. Thanks for being around during this whole hash up. It's really comforting to have someone be so present right now.
 
Frustrating that the medical systems have to make things so difficult at times of real need. And weekends of course are the worst, because most doctors don't have office hours then.
I'm around and will check in to look for you. :hugs:
 
Thanks, Jen. I was in the middle of a really bad mood switch halfway through this thread, and I couldn't be open about it with our TOS here, but today I'm feeling much clearer and happier, so I thought it'd be fine to discuss now. I started a new thread about it in the Kitchen.
 
Kirsten I don't know your situation really well but I have had controlled tonic clinic seizures for 20 years and tried many of those dugs you mentioned above as well as epilim (which made me dopey) and they are horrible things. Any wonder you don't feel any good. Could you try Lamictal because it's heaps better. I am trying that Zonegran this week and it is not bad either, even taking a combined introductory dose to start with I'm still alert enough and happy. Maybe you could ask your doc about the newer drugs if they might work for you.
 
Things have gotten quite a lot better since I started this thread. I am managing to work far better and I'm not nearly as ill. I'm currently working on Neurontin and Phenytoin. I've tried all the AEDs. I'm allergic to Lamictal. I wish I wasn't--it was a great drug for me. The two new AEDs are also not an option, so it's looking more and more as though I'm going to have to see the neurosurgeon next month.
 
I am so glad you've been better since the start of the thread. I am taking lamictal now and so far so good. I have not tried neurontin, no one has suggested that to me before. I am taking keppra at night only. Why am i so tired today? I have been up for 3 hours and it is 8 am here. I am thinking about going back to bed for a bit. Is there a way you found to get over being so tired? and was it just the drugs? For me this is an unusual thing. Sometimes i find that good vitamin supplements change my energy levels quite a lot.
 
Hey, Janus.

I think I was just tired because of all the seizures. I went through a phase where I was having so many that I had to stop working or, essentially, living any kind of life at all. I think that must have exhausted me by the time I started getting better, so I think I was more reactive every time I had a seizure. One thing I have come to think in the recent weeks is that I just have to sleep when I feel I need to. I don't know if it applies all the time, but lately if I hold off on the sleeping the entire day is lost, whereas if I take a nap, I might wake up feeling quite a lot better. I probably would have done better if I'd done a course of vitamin B12 co shots. When I'm worn out, they tend to make things easier. My doctor prescribed one a week for four weeks but I was too lazy to do them. Many, many years back I had liver problems from food poisoning and I'd get a shot before work. It made life possible.
 
Kirsten, i get that. the importance of sleep to health. Lack of sleep is a trigger for me. I am working on having the discipline to know when to check in with my body. I am guilty of just having more caffeine (bad for me also). I can not get B12 shots, but i have the pills, is that helpful? i am sure it would not have all the effects of the shots but may be better than nothing. Naps are great. I may feel groggy for a short time after but much better for the rest of the day.
 
The only time I've done B shots is when they've been prescribed, and I've never really bothered to look into why they were needed for what was going on at the time. I just know that my system was very worn out during those times. So I might be the last person to ask about them. My feeling is that supplements are helpful only when vitamins are lacking in the body. It seems that a lot of the CWE crowd have been prescribed B tabs, though. I would advise you to ask your doctor about them. It's possible that the money you're outlaying on them might be better spent on a more effective remedy. People tend to be very quick to arrive at B supplements, but many of us have a very real problem with vitamin D and folic acid because of our AEDs. Some of us have elecrolyte issues, and some of us have low blood pressure (a common AED effect.) So the number of potential fixes is huge. Your doctor will be able to pinpoint the best way to get over the tiredness.
 
Not sure how long ago you started the lamictal, but is it possible that you're having side effects that are making you tired? And if so, do you want to push on at your current dose or ask your doctor to take it down a notch to push up later? When I've slowed the titration rate down and had my doc reduce the dose a little temporarily, it has literally fixed the problem.
 
THANK YOU. that is a great idea. I will see the epileptologist soon and i will ask him about that. I also find that too much sugar right before bed makes my sleep bad. The habit of 5 or 6 large bowls of ice cream just before bed can not help.
 
I'm not too good on the coffee front myself (understatement of the century.) I like coffee but not enough to warrant the amount I was going through. I think it was just me trying to overcome the med side effects but it took me six months to figure out that it was playing havoc with my digestion. So now I'm on caffeine-free tea and much happier for it. Don't know about sugar--my drugs take away that issue.
 
Good deal, cudos to you for doing that tea and congrats on the sugar. I am working on being that way myself, however slowly.
 
It's actually just the phenytoin that's to blame for the sugar issue--it slaughters your appetite. And I'll never completely give up coffee. I'm just not behaving like a heroin addict with it anymore.
 
I will ask my doc about phenytoin and thank you for the great descriptive analogy of heroin and coffee. Can i use that in a poem? It is after all yours.
 
You certainly can, but don't get too keen on the phenytoin. It is THE drug from hell. It's the oldest AED, and its side effects are vicious. If you really want to take control of the appetite, topomax is a possibility.
 
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