How does everyone cope? :/

[Howll]

So, I haven't posted here in a while. It sounds silly but I felt I was reading into other people's experiences here so much that I was panicking myself even more and it was making me constantly worry about everything in regards to my epilepsy.

I just need to rant, so I apologise if this is long.

In January everything finally got on top of me and I got signed off work and have been off work since. Every since my seizures returned in Aug 2015 my anxiety has been going up and up. I've become agoraphobic and I'm scared of being left alone.
I had put off taking medication to combat the anxiety, partially because I have an irrational fear of meds and also because of the risk of increased seizures.
I decided to go on citalopram and everything was OK, I tapered up to the max dose, I did notice my anxiety had gone down, but was also feeling tired all the time. Then I noticed that I had started having seizures every two weeks, only small ones. But this was the most I had ever had, so with that and the constant lethargy I tapered off them.
Since then my seizures have reduced slightly but my anxiety and depression is at an all time high and I'm struggling to cope.

I haven't been on seizure medication, mainly because of the fear of side effects and that my epilepsy isn't all that severe. I was having a petit mal seizure every 6-8 weeks, lasting a few minutes and that's it. But I came to the conclusion that until the seizures stop completely, I don't think the anxiety will go. So I spoke with my epileptologist over the phone and agreed to go on lamotrigine, this was on the 18th of July. He said he'd get his secretary to send a letter to the GP so that I could be prescribed them. It's now almost 8 weeks later and I've still not had the meds. His secretary is useless, countless times I've rang and told her if I don't get them soon I'm going to end up talking myself out of taking them, she assures me it'll be "at the end of the week", and then makes up an excuse the next week as to why it wasn't done. I think she's finally sent the letter, but now I've talked myself out of it.
I'm so terrified of medication, of side effects, even from the "vain" side effects that could happen such as hair loss or weight gain, to the more severe ones like the rash, cognitive problems, liver problems etc. Everything gets to me.

I honestly just don't know what to do anymore, today has been an especially anxious day and i just can't cope. I've got an appointment with Liasion Psychiatry in October, who specialise in mental health problems related to existing illnesses, but apart from that I have nothing. I've tried all of the therapies and counselling and nothing has worked.

I see so many people who are worse off than me that are able to just get on with it and I want to know, how did you get to that point? It feels like it's not going to happen for me and I feel hopeless. I was considering trying CBD products but I'm even scared of that, I wouldn't even know where to start and don't know if I could afford it since I'm probably going to lose my job.

Sorry again for the long post.

 

[Loopy Lou]

I hope this all makes sense, i'm a little dopey today lol


Just wanted to say... it doesn't matter if people appear to be worse off than you. Other people's struggles don't make yours any less valid. So you have no need to feel guilty or ashamed because "other people have it worse". You need to take care of yourself too.

I had a similar problem with neuro getting my medication recently. Do you have an epilepsy nurse or can you ask your neuro's secretary if there is a service like that in your area? After a month of trying to sort out my new prescription, the epilepsy nurse liased with the neuro and the doctor for me and got it sorted within a day. It might be worth a try!

Anxiety is an awful thing to experience. You have to weigh up whether -potential- side effects will outweigh the benefits of trying another medication. Just like epilepsy medication there are many different ones, so it's a case of finding the right one and the right dosage for you. With things such as citalopram, it can take weeks for the medication to even out in your system so that it has the desired effect, so it can take patience. It's not an instant fix, just one day you realise that things don't seem so bad anymore. I was on medication for anxiety for a while, and i thought the medication wasn't working until one day, i realise that i'd been much calmer for a while. I didn't go manic, it wasn't a drastic change, it just sort of "normalised" me. (i think it was mirtazapine).

It's good that you have another psychiatry appointment. It can be scary to try these, especially when they haven't worked before, but if it's a choice between doing nothing, and giving something a try, it's always got to be worth a go for better quality of life. If you do nothing, then it's likely that things won't change.

Take care, and look after yourself. Things will get better :hugs:

 

[Howll]

Thanks Loopy.

I was on Citalopram for 6 months. As I said it did help, but the fact my seizures increased and it made me so tired I was sleeping for like 3 hours every afternoon made me come off it. I was prescribed Mirtazapine, but after Citalopram increased my seizures I was too scared to take it and I haven't even told my Dr I'm not taking it I dunno whether to give it a try or not.

 

[Nakamova]

I'm on Lamotrigine without any problematic side effects, so it can happen for you.
I hope your neuro's office comes through with the rX for your GP, and that it works out well for you.

 

[Howll]

I'm on Lamotrigine without any problematic side effects, so it can happen for you.
I hope your neuro's office comes through with the rX for your GP, and that it works out well for you.

Thanks Naka.
I keep telling myself that my life feels as if it's at rock bottom at the moment so surely it can't get any worse

 

[MountainMama]

I'm not on lamotrigine, I'm on something different (vimpat/lacosimide?) but it also has a long list of awful side effects which were terrifying for someone with an already precarious mental health situation. I cried and cried the night before I started it and swore I was just going to stay in bed until I died because everything was awful and there was no point to any of this.

But in the morning I took the meds anyway...and I swear to god it totally and completely elimined ALL of my anxiety/depression/phobias/PTSD like flashbacks etc etc. Like...almost immediately. I can't even think back to a point in my childhood where I wasn't severely depressed and anxious and now all of that is just gone. Apparently a manifestation of undiagnosed temporal lobe epilepsy.

So...my point is, it isn't always awful. Sometimes the meds really do help. Sometimes they help things you were sure were beyond help.

I hope your prescription comes through soon, and I hope it makes you feel better. I know everyone is different, but they really helped me. A lot.

 

[valeriedl]

Almost all meds have side effects, even over the counter ones. Just because a side effect is listed doesn't mean you will have it either. I'm on a few meds right now and really the only side effects I have are being angry from the Keppra and being tired but I'm not sure which med that's from because it's a side effect of almost all of them. I usually just take a short nap during the day and I'm fine.

I've been on many meds through the years and if they don't work or if if the side effects were too bad then my neuro will take me off of them. I think the worst side effect I had of a med that my neuro took me off of was not eating. I'm on Lamotrigine now and don't notice having any of the side effects that it says it has.

I hope the psychiatry appt helps you with things.

 

[Sabbo]

I'm currently on Topamax & Vimpat, as well as folic acid--I have simple and complex partial seizures. I still get breakthroughs. Those are the days I think "What good are AEDs?" Then there are days when I think the seizures are better than the side effects.

 

[Mari]

Your post makes absolute sense to me Howii. I cannot take any of the mood-modifiers. Everyone that has been tried produces seizures, but the lamictal definitely works. I wrote up a list of all the drugs that cause seizures and found a common thread. A low seizure threshold seems to precipitate the attacks (seizures), and are all dose related. Can you talk to your GP about the neurologists decision to put you on Lamictal? He should have no problem either faxing or calling the neuro.
I am just super careful with any drugs I take. If seizures are a contraindication of a med. I just do not take it...smile. The lamictal/lamotrigine is wonderful...smile.

 

[Sabbo]

My neurologist recently had me try adding Lamictil as a 3rd AED due to the breakthroughs. Unfortunately, about 2 days after starting, I felt a rash starting on my upper back, just like the one that I broke out with from Tegretol. I contacted my neurologist & he said to stop taking it immediately.

 

[gymrat827]

My neurologist recently had me try adding Lamictil as a 3rd AED due to the breakthroughs. Unfortunately, about 2 days after starting, I felt a rash starting on my upper back, just like the one that I broke out with from Tegretol. I contacted my neurologist & he said to stop taking it immediately.

same happened to me with lamictal. Also felt a spinning sensation most of the 36hrs i was on it.

once you try 4-5 epilepsy meds, the odds others will work is very very slim. Ive tried about 9 or so.

But coping for me, over the years has gotten harder and harder. I am just meaner, angry & attacking everyone in my life.

 

[Topcat]

I'm on Lamotrigine now.
When I take (not all the time) it makes me feel drunk. As a recovered alcoholic I don't like that feeling. But I have gotten used to it.
Other than that I'm doing pretty well on it.
MUCH better than being on Keppra.
I know the feeling of dealing with stupid secretaries.
I had one tell me once that a near beer I drank, (after my brother died at his wake), was the same as a regular beer. As a recovered alcoholic that really bothered me.

 

[Howll]

As an update, I received the letter CC'd from my neuro's secretary that has also been sent to the GP and what a load of crap it is.

It says "Steve has previously been prescribed Lamotrigine so can just carry on with that"

Yes I was previously prescribed it, almost a year ago, but the GP wanted a breakdown of what the Neuro wants me on, and at what dose and when I should be upped, which my GP does not have because I've spoke to them.
Not my GPs fault, he is just being cautious to ensure that I'm getting exactly what the Neuro wants for me but his stupid secretary doesn't seem to get that.

Ughhhhghghghgh.

Thank you for all of your replies, it's really good to see that people have had positive experiences, you usually just see negative experiences online so to see people have had success does help put my mind at rest.
I don't know why I'm the way that I am about medication, it is like an ingrained fear of my mind or body being altered beyond my control and it terrifies me.

 

[Freda]

I'm sorry you're having such a hard time, can you have a telephone consultation with your GP as your neurologist is being rather slow? I don't know if you can do that where you are but we can here and if you can't go to the surgery it may be an option. Your GP could contact the neurologist instead and give him/her an idea of how you feel about the whole situation.

I don't have seizures, I'm on here because my daughter has just started having them at 33 years of age. That aside I do take citalopram and I found by going on a citalopram forum many people felt tired while taking it and changed to taking it at night - I don't have that problem and take mine in the morning but I just wondered if you took yours am or pm.

 

[seizing more]

lamotrigine

I'm on it have been for over 5 yrs, can't remember exactly when. I'm on 500mgs, took me a few months to get used to it, I started at 100mgs... I definitely have some memory loss, but I'm also actively having seizures. I get up feeling like a zombie, doesn't get much better all day. I don't notice more anxiety but I am quick to anger 0 to anger 1.5 sec :roflmao: