Thought I'd try a new survey! It really does help to know if there is just one other person out there who can relate to you.
Here's the question:
Oh, might be important to tell you what I take. So it's the following meds twice a day that total - 800 mg Dilantin, ■■■■■■■■ mg Tegretol and 60 mg Cymbalta.
Ok, so some days I feel fine - really, I feel like I feel fine anyways.
But there are other days that I feel very weird and cannot make the words I want to say come out of my mouth. I know it's there right on the tip of my tongue - it just won't come out. I feel spacy and just not "with it". I'm very tired sometimes - when there is really no reason to be tired! My brain feels spacy - like when you just wake up out of a deep sleep, but all day!!
Anyone else have these up and down days caused by medications? My thought is that I'm on the same meds, with the same dosages, at the same time - so why would there be changes in the way I feel from day to day? Is that normal?
I'm so sorry, I think this must have been another dissappearing post, becaue yes, yes and yes, I know stupid in all its shapes and forms since starting on the AED's from the speech, the vision, the loss of words, the loss of memory, the drunkeness the bouncing off the walls, the cotton mouth the insomnia, the inability to wake up from the hangover from them, the mood swings, the suicidal tendancies some of them brought on, I undersand them all too well....
Its all very very familiar! All too familiar, I'm not so bad now since I started on the tegretol retard, its an easier dose to maintain and it doesn't wallop you the same way but I can absolutely sympathise on this front!
I think we all go through this to one extent or another on these meds unfortunatley and its a balancing act of pain relief verus wasted......... hard thing to juggle.
Not sure thats much help, but even if its to know that I know the feeling all too well I hope it helps a lil.
I'm on 1200mg of gabepenthin per day and I complete empathise with the "stupidness" you describe. I am so forgetful it's not funny (no, really not funny as I work full time dealing with students and student issues all the time and can't remember who I've spoken to/where I've left things etc - I seem really unprofessional). Haven't had so much of the "down days" yet but aparently i have them to look forward to. In general I feel "hungover" when I wake up in the morning - groggy, drowsy, spacy as you said....it's terrible!!
Anyway don't have a solution but wanted you to know you are not alone!
Thank you for replying Gracie and Granadam (?) !! It really does help so much!
This is exactly what I'm talking about...but do you find it changes from day to day? I just find it so weird that you can take exactly the same dosages every day - but yet some days are most certainly worse than others when it comes to remembering/talking or having a quicker thought process. I don't understand that.
And yes, I get it - it's SO NOT funny when you are dealing in a professional environment, with numbers, 80 managers and 450+ employees. I used to be such a super achiever...now (more often than not) I can barely get through the day. And if I don't have one of the 5 notepads I keep around I'm lost. It's horrible when your boss asks you for something and you just look back at her with a blank look because you can't remember what the heck she's talking about. Or you have a vague notion - but it's just not coming back to you.
I get so frustrated. And sometimes I wonder what I'm going to forget that's going to cost me my job. Oh well, I'm just venting. Yesterday was actually a pretty good day - so I guess I just need to hold on to those.
Thanks for taking time out of your day to talk with me. This is a great site. Sandee
Hi Sandee tried to reply the other day and my computer crashed. Since then I've had an attack of my own and haven't been very well - the stupidness has gone this week, in place of pain and sooooo much discomfort I can't even explain.
Anyway to answer your question yes I find my reaction to drugs can vary from day to day. The day I wrote to you first I was ok, the next had a "stupid" day where I could barely remember taking my drugs and then the following day had an attack of pain that hasn't left me. The unpredictability is very hard to deal with. But in regards the stupidness, I have found I have had to make those closest to me aware of the side effect, as otherwise they do end up thinking I'm completely unprofessional. It's horrible being like that, before being on these drugs I was as organised and professional as they came and now I deal with students all day long as well as many many other colleagues - they think I'm ditzy, unorganised and never know what I'm doing. I wonder what kind of reference I'd ever get from my current employer - have only worked there 3 months and all that while I've been on these drugs so they've never gotten to know what I was like before. Plus I've had so much time off in that short time, all due to this condition and of course, they don't understand.
I am frustrated beyond belief and aside from the pain, I'm kept awake at night wondering how long I can be a professional for and at what point I will have to give up my career.
I'm so sorry to hear you are in pain. It just 100% sucks that one second you can be fine and the next miserable in pain. And the computer crashing isn't very good news either. I'm glad it's back up, even if your'e not!
Thank goodness I have been at my job for 3 years now and I had a couple of good years, so they know I'm not like this as a rule. But I do have concerns that everyone might forget what I'm usually like w/o meds.
Thank you so much for your feedback. I just think if you are on a medication(s) it should affect you the same from day to day. But these meds are wicked (at least for side affects-awesome when they work tho') and I do have "stupid days" or days that I can't remember from one minute to the next what I was doing. Yea, age has something to do with it - but not like this. I don't have Alzheimer's for Pete's sake!!
I to have sleepless nights and many worries about how long I can be a professional for. I also worry about side affects from an MVD and what that will or could do to my career. I need surgery, the neurosurgeon has recommended it. But it can take so long to heal and when I get to work I'm usually flying like my hair is on fire. How will I be able to do my job? I've heard the headaches can last for months. I already get migraines...so what will that mean for me after the surgery?
I guess all I can do is put my faith in God and pray that He has this under control somehow, some way. Because if I dwell on it for to awful long I get so freaked out and stressed and then of course we all know that isn't very helpful for the pain - and here we go on the merry go round again!
My heart is with you and I understand. All I can say is I will pray for your pain to subside. Crazy - you don't know me and email can be so cold but what I wanted to say is: I'll pray for your pain to subside so that you can go back to being stupid again! But that's just me and my smart alec sense of humor. Maybe if your like me at all that made you smile. Hugs! Sandee
granadam said:
Hi Sandee tried to reply the other day and my computer crashed. Since then I've had an attack of my own and haven't been very well - the stupidness has gone this week, in place of pain and sooooo much discomfort I can't even explain.
Anyway to answer your question yes I find my reaction to drugs can vary from day to day. The day I wrote to you first I was ok, the next had a "stupid" day where I could barely remember taking my drugs and then the following day had an attack of pain that hasn't left me. The unpredictability is very hard to deal with. But in regards the stupidness, I have found I have had to make those closest to me aware of the side effect, as otherwise they do end up thinking I'm completely unprofessional. It's horrible being like that, before being on these drugs I was as organised and professional as they came and now I deal with students all day long as well as many many other colleagues - they think I'm ditzy, unorganised and never know what I'm doing. I wonder what kind of reference I'd ever get from my current employer - have only worked there 3 months and all that while I've been on these drugs so they've never gotten to know what I was like before. Plus I've had so much time off in that short time, all due to this condition and of course, they don't understand.
I am frustrated beyond belief and aside from the pain, I'm kept awake at night wondering how long I can be a professional for and at what point I will have to give up my career.
I too have had this feeling. The last few days it has been such a struggle to compose reasonable work emails. I have to re-read them a number of times to assure myself that they make sense! I work in the policy area within government and so writing is the core of my work. When i read things i wrote some time ago i am surprised how clever i seemed :)
And i totally sympathise with having to write everything down - nothing seems to 'stick'. It's like a fog around the brain dulling thinking.
I am pleased to re-engage in this discussion area and see that i am not alone (not that i want any of you to experience these things!) as my dad has Alzheimers and I have been thinking.. early onset?
I take 3600mg of gabapentin. I am not supposed to take any more but have been slipping in a few extra halves to try and manage a break through of attacks. i forgot to take my tablets a couple of times over the festive season (never normally happens) and i think that has made it all go pear shaped again...
Not sure how this discussion area works and maybe i should start a new thread but i'd be interested to hear from others whether a small slip up with meds - even taking them last, can lead to attacks?
I hope the year brings many more better days than not for you all!