Side Effects- how do you cope?

[nicholas:)]

What sort of side effects do you have and how do you cope?

I take Clonazepam 4 times daily and need to sleep for an hour or two after taking them. I’m also on Tegretol and Quetiapine (plus others for my heart condition).
I suffer many side effects and cannot be certain what drug is causing what symptom or whether it’s a combination of them all.

I cannot work at present. I admire those of you who manage to hold down a job. It would be interesting to know what meds you are on and how these affect you – in a positive way and in a negative way.

For me the positive side of things are my seizures are reduced. The negative side I will share with you as you share with me…

 

[Silat]

If Keppra starts to cause irritability and aggression, I'll go practice different martial arts on a punching bag, or just beat the tar out of it... depending on how bad it gets. For me it's an aggression that builds up, and needs a vent. Once it gets vented in some way, the aggression goes away. That's certainly not for everyone, as injury is possible and some people are triggered into seizures by exercise, however for me it works so I go with it. It may just be that the aggression gets negated because I'm doing something I really enjoy... I'm not really sure why it works

As far as depression and stuff like that goes... I always keep a positive attitude and a smile on my face, and joke constantly. Whatever depression the meds might bring on is alleviated by constantly staying active and upbeat.

I have a lack of coordination going on lately, and I'm not sure why. I haven't found a great way to deal with that yet... but what I try to do is just be more aware of what I'm doing the moment it's happening. If I'm washing dishes, I focus on washing the dishes, I don't think about what I'm going to be doing in 5 minutes, 5 hours, or 5 days in the future. That also is a pretty stress relieving mindset to be in, as I'm totally focused on the here-and-now, so I don't worry about what's coming up later.

Um... Insomnia is a constant problem... so I sleep when I can.

As far as benefits go... right now there really aren't very many. It was working wonderfully for a while, but now it seems I've built a tolerance to the medicine and it's not working very well any more. But such is the way of things, I have a neurologist appointment in a week anyway so we'll figure out what needs to be done/changed then. Worrying about it isn't gonna benefit me now, so I'll just deal with it later, when it'll actually benefit me.

I've found a lot of the problems we deal with tend to stem from our mentality towards them. If a medicine starts causing a depression, a lot of people just fall into it. The goal is to normalize ourselves! So if you start feeling one way that's abnormal, focus on ways to bring it back to the norm! That doesn't always mean medicine either... little things can make a world of difference!

 

[nicholas:)]

Very positive, Silat.

Like the idea of a punch bag but would worry about my heart - still, I could have a sissy fight with it until it gives me grief then I might give it what for.

I play the piano and this allows me to get some emotions aired and dusted - just have to make sure I don't allow sad emotions to pull me down.

Yes, a smile on the face - a good one and I find when someone smiles at me I feel great!

I too have lack of co-ordination - I fall backwards when I get out of bed/chair or even if I'm standing up, and you are right- just be careful! Remain focused - tiny steps, don't take in the whole picture.

Insomnia - same problem, same solution - get sleep as and when you can.

Sorry to hear about your tolerance to your meds - not a problem for me yet - good luck with you neurologist next week!

Depression is a big thing with me - but again you are right, find distractions and don't let it beat you. I guess it's easy to take antidepressants - a crutch to lean on, I guess I depend on them more than I should.

This site helps me - info., creativity, friends one make to pass the time in a shared, constructive way.

I'm not good at keeping to a meal routine - I tend to miss breakfast, lunch and maybe tea then stuff my face at dinner time - must sort this out!

Thanks for your thoughts Silat - some inspiration there!

 

[nicholas:)]

I've put on 4stones since being on meds- wardrobes of clothes but non fit me - having to buy from charity shops

 

[Silat]

Weight fluctuations seem pretty normal for everyone on seizure meds it seems. Don't feel disheartened, little changes in diet and routine can lead to weight loss, or at the very least weight control.

This site helps me - info., creativity, friends one make to pass the time in a shared, constructive way.

:agree:

 

[SlimBlue]

Over the past few months I've noticed that my condition is changing- since I got stable on teg/kep/lam a good few years ago, I've considered myself quite lucky re. side effects and my seizure type/rate has been pretty constant.

The reason why I'm here in fact, is that I had a complete meltdown after a few absence and grand mal siezures the previous weekend. I had 4 over 2 days, which is a busy month's worth for me and I just did not 'come back properly' - which has happened a rare few times over the past 17 years.

For most of the following week I was going through the same nasty hallucinations and fear I had when I first started the kep/lam- really loud titinnus, developing into creepy audio whispers, peripheral visuals, and a wave of fear I was struggling with constantly.

It scared the shinola out of me- I could barely remember the side effects from before, and after being stable for years it was just completely out of the blue. I thought it may have been a concussion at first, but when my normally bareable insomnia also began keeping me up for a few nights, and I noticed loads more rage outbursts I began searching for info.

The point I'm trying to make is: I dealt with that very scary, out-of-the-blue side effect by coming here, and almost immediately concluded that it was probably more than time for a med tweak, as my 'condition' had been slowly worsening.

So thank you- I should have an appt. to discuss my meds, and have an MRI sometime soon... after a decade of just munching the tablets, coming here has completely changed my attitude and even after this recent blip, I feel loads more in control now - just by deciding to be more pro-active, that to me seems to be the key

 

[PFunk]

Depression is a big thing with me

Have you ever tried Lamictal? I know switching med sucks, especially if they are working but Lamictal is also know for its antidepressive properties. It helped balance the depressive/angry side effects I had from keppra (keppra rage!).

How long have you been on your current cocktail of meds? I found overtime my body learned to regain its coordination. At my last appointment, I impressed my epileptologist with my balance even though I take enough meds for a horse. That made me feel good. Here’s a suggestion, stand next to a table or chair and practice balancing on one foot. I work it into my day. Maybe a little at work, when in line at the grocery store, cooking dinner. It also helps build leg muscles, coordination and make you look like a fool when in public. It’s kinda fun.

I have the opposite problem and can’t get enough sleep. Back when I was on 4,000 mg of Keppra, I could sleep 12+ hours easy. Now that it’s been cut back, I get by with 8. I did have problems sleeping when I was on Trileptal. What a Paradox, being exhausted but unable to sleep. It’s cruel.

I found one of my triggers is hunger, which is good because I like eating. Try eating regular meals and see if that helps at all. It keeps your metabolism up and your blood sugar regular. It’s all about keeping the engine running smooth. It works for me. Regular exercise has helped a lot also. It sucks while doing it but you feel awesome after. Then after a while you’ll find yourself liking it.

 

[nicholas:)]

Yes I was put on Lamotrigne (Lamictal) Last year and suffered 6 months of being claustrophobic and agoraphobic at the same time - Doctors handed out loads of Diazepam when I stopped Lamotrigne and started Tegretol. Tegretol lowered my seizures from 109 - 20 for three months then clonazepam was added and my seizures are down to 1-5 a month.

At the same time, for depression, Quetiapine was added to my Mirtazepine. so what with my heart pills I'm on quite a cocktail!

Starting most of the meds at the same time I'm not sure what is causing what side effect.

Due to see Doctor at end of the month so I can discuss these things with her.

Good advice about eating regularly - and how to make myself safe, cheers!

 

[florecita]

Hi guys,

Depakine does put me in an aggressive and also an extremely bitchy mood, so I have to take it with my usual Lamictal in the evenings, right before bedtime, and immediately follow up with sleeping pills. Lamictal is okay, just occasional depression (suicidal thoughts happened twice, but there are so many great things around that I quit that on my own).

As for side effects... Depakine makes you gain weight, and that really sucks. When you can't fit into your loose jeans anymore, or wear that favorite shirt... I know that feel. And most horrible for us girls - cellulite and belly appears, terrible stuff!

For cellulite... I started using some slimming creams. They don't really help much with "super slimming" but they do stop or at least slow down the fatness. Walking for at least 4 km a day helps you remain toned plus some basic exercises, in particular, sit-ups and leg-lifts. I'm too lazy to do all that, but hope somebody will find this useful

Funny thing, you know what I do when I'm pissed about something and really want to express my rage? I can't shout at my fiance, it's not nice where I came from... so I just get so angry that I start cleaning everything that gets in my hands. Washing clothes, mirrors and windows, doing the dishes, scrubbing the floor, sweeping... Everything with care but it helps me blow the steam off. After that I'm a normal person again.

 

[Soniag]

i take tegretol and at first i felt really sleepy and confused. ive been on it for a year now and had it increased a couple of times but i feel ok now

 

[julie wishes]

A resounding eat healthy frequent meals and exercise (cleaning everything in site, punching the bag, walking) ! Even with your heart condition, walking is probably okay. Check with you heart physician, but a few slow strolls a day rather than trying to walk two miles may be better for you and will be excellent for your mind. The more you think about all the things you see outside, the less you think about being depressed. I'm a science geek at heart so I find little ecosystems and symbiotic relationships that fascinate me and preoccupy my mind. Also everything in nature is amazing to me so I'm easily distracted.

I wonder.... as far as side effects, does it really matter for you what drug causes what side effect? If you have to take the heart meds. Then you have to live with the side effects. If you've tried so many E meds and finally found some that work so well at decreasing all those seizures, then you probably want to stay on those... so, just wondering if silat has a point about just dealing with the hear and now. Not trying to figure it out, just trying to live with it and make the best of them, and do your best to stay healthy with food and exercise.

You are so talented. Your poems and now I hear pianno. So lucky. Many of your posts have helped me a lot.

 

[julie wishes]

Excellent question though. I hope to hear more replies.

 

[nicholas:)]

I guess to some degree I am managing. I can easily live in the now - before, when I had the heart attack I thought my days were numbered and couldn't think of a tomorrow.
With time, I have seen that there is life after a heart attack.

I spent a lot of time worrying bout my seizures, now I have far fewer that is great but the meds do make me tired. I fear pressure from the DWP (Department for Works and Pensions) to get back into work when I know I can not hold a job down.

I don't know how much you know about me because my posts are scattered all over the place, I have gender dysphoria -from the age of five I felt I should have been a girl and not a boy. My mother was an alcoholic so I got no attention so as I got into my teens there was no time for me to explore this, all the attention went on her. Now I find myself dealing with this and depression. I attend a monthly support group re the gender dyphoria but I'm all too confused about my gender now. I wear toned down make up - eyeliner, mascara and have a wig plus wear tom boyish female clothing when I feel it safe to do so - I'm so sensitive to what others think and I fear ridicule. So I guess people on the street might not even suspect that I've crossed dressed. Most day I dress as a male - less hassle and easy on me.

I guess I don't like looking in the mirror and seeing a man and yet to get away as being female is not easy. If I was in my twenties I'd probably have a sex change - I feel it too late now. Hey why did I digress? I guess to show you why I focus on my side effects - a distraction from other issues which I'm having difficulties coping with.

 

[julie wishes]

Still talented and soulful regardless of inner issues. I say do what you feel. Who cares what others think. But, from your perspective, it's a lot to deal with. I get that focus is on other stuff. I said in a post earlier another thred. Something about finding peace. Inner peace is the biggest gift to yourself. I worked on each little thing until I found I actually really liked who I was and was at peace. I worked hard to get there. It took a lot of time and energy and could be a good distraction from your worries. A good way to start is those little walks. Your poetry is excellent. I look forward to more.

 

[nicholas:)]

Thank you Julie. Yes, need to find inner peace. Sometimes I think I have it and become confident by just being me- it's a world of diversity, why make my issues bigger than the World! People will like me or not - their choice. Thank you for your helpful posts. I will start with little steps.

 

[Silat]

I've got an idea for you! It's something that's helped me through bouts of depression or periods where I find myself really despising myself as a person...

Every morning, write down something you like about yourself. Just one thing, each and every day. Make sure you don't repeat the same things.

Every night, before you go to bed, write down something you're happy/proud of accomplishing for that day. This should be easy for you, considering the quality of your writing talent... but find other things you're proud of or happy about as well!

Pretty soon, you'll have a collection of some of the countless reasons you like yourself, and all the things you've accomplished... and every day and every night, you'll be reminding yourself that, no matter what, you're worth it.

Because no matter what your circumstances, medical issues, emotions, and anything else life has to throw your way, you deserve to be happy and comfortable with who you are.

 

[MaryK]

I take phenobarbital which can make me depressed at times. My dose in in the mid range at 120 mg a day. I absolutely have to get enough sleep. I get regular drug levels.

I find that humid heat, stress, etc only make me more tired and depressed.

Silat... love your idea .

 

[nicholas:)]

Thank you Silat - a brilliant idea! I will start this morning. Having people still talk to me is great - one is nothing without friends. Cool.

 

[Hand of Blood]

both my meds make me tired no energy drowsy, depressed and angry! at the min i feel worse than usual so im not coping so well, no matter how much sleep i get im still tired! its hard to sleep through day with a 2 yr old running around hahaha.
Im scared to change meds! but i think after a year of being ok i think im on way to much meds!