Where I'm at now...........(long)

[grace.mackay]

Well hello my lovely lot,

My apologies for not saying hello for a while, I've been lurking and haven't had a chance to post, between working and panto week and trying (unsuccessfully I might add) to run a house things have been chaos lately.

Well I had been on 800mg of tegretol, 300 morning and evening and a 200 in between which was controlling things fairly well, my doctor changed this about 4 weeks ago and removed the middle dose and added garbapentin 300mg in the evening, so that was sitting at 600mg of tegretol and 300 of the other.

This was going mostly fine other than the fact I couldn't get out of bed, I still can't properly if I'm honest about it but that's by the by, after they changed the pills, the spasming cramping behind my eye became less and it was a reasonable trade off.

On Friday my drugs were changed again, I'm down to 200mg of tegretol morning and night and 300mg gabapentin morning and night, to be reviewed in a fortnight. And you know what? Today has been the worst day I've had since my 1st day on the tegretol near on 3 months ago, there's been lots of pain, not blinding electrocution, more burning radiating from my inner ear, and very uncomfortable, not there all the time, sometimes worse than others, sometimes a low grumble underneath, but LOTS more pain, and I'm no longer in any doubt, the left side is kicking in too, which has left me less than pleased, it hasn't it the same lofty heights but it's deffinatley there, I was kind of hoping the pains I'd been feeling there were just a figment of my imagination and I was over reacting to every little twinge and that it was nothing, but it's deffinate now, I've had a few mini bolts and there's not a damn thing I can do about it.

So that's where I am, I just thought I should keep you up to date, so after having raved for so long, I will wish you all a very merry christmas / happy hollidays and hope you all have a good level of relief throughout the festivities, if only we could partake in a wee sherry or 2, it would help no end! :)

Lots of love to you all, and I will speak to you soon.

Grace.***

[ella138]

Hi Grace
Finding the right therapeutic dose of meds is always a challenge. You know only too well that these drugs come with tremendous side effects, so you have to experiment and find just how much you need to stay comfortable without going over so you can keep those side effects to a minimum. There is no question it is a balancing act, but it is one you have to go through to get to the right dose. Sounds like you need more Tegretol and possibly less Gabapentin. The good news is that it worked before, so it should work again, you just need to get to the right dose and stay there for a while to give your body a chance to adjust to the meds. Then the side effects will diminish somewhat as well.
Happy holidays to you too. Keep us posted how you are doing.

[baywatcher]

Hi there Grace, I've been thinking about you and wondering how things were going. How much leeway does your doctor give you in trying to balance your meds? Can you adjust one vs the other as long as you stay within some guidelines? You both know what results you're looking for - minimum pain and maximum freedom from side effects. It can take a while to get things adjusted, and sometimes it means switching off to something different altogether.

I also think that it's more difficult to manage the side effects, especially the tendency to be tired and sleepy, when it is so dark and cold. I would imagine that dark and cold is clamped down on you just as it is here. I think the bears here have the right idea, just getting into the snuggery and sleeping the winter away appeals more and more as I get older and less physically sound. Oh, these dark mornings. I don't really think anyone should have to get out of bed when it's too dark to see her slippers and robe!

Take a few minutes now and then and give us an update. And do have yourself some lovely time over the holidays, hugs, Nancy

[southerngirl]

Dear Grace, when we are first diagnose finding the right meds can be extremely hard on us both physically and mentally. And then adjusting to them is just as hard, take it easy and try not to do too much these days until your body adjust to the amount of meds you are taking. I was just watching on TCM a great movie made in 41 about your country in the 1900's. How Green Was My Valley I think was the name of it. Beautiful country where you live. Hard working people. I don't know if a wee sherry would hurt but because of all these drugs we have to take without our doc's approval we have to give up lots of little things that would put a smile on our faces.
I hope also that your holidays bring you some joy, and also relief from your pain.
Catherine

[grace.mackay]

Morning all,

( I say that laughingly as I've just come in from the pub, so really it is evening it feels like an night still, but it's too late at night for technicalities, but fear not, I was good, not a sniff of a wee sniffter, I just go out and sing in the pubs with a friend of a Thursday night)

I am doing ok, and thank you all for your kind thoughts. The weather is changable at the minute, but mostly bitterly cold and blowing that horizontal rain we get round here, the weather doesn't seem to be affecting me, and I'm not needing to have my head wrapped when I leave the house through fear, no wind triggers which is excellent.

As the days go on with this new dose, things are changing, before I'm due my second batch I start getting pain and I know that I'm in need of more, I am having more grumbles through the day, and the sensations are different now , my forehead is more active again, so is under my eye, and I'm getting those pin pricks under it on my right side, a little throat, a bit of burning in the ear and face, it seems to be closer to my skin now rather than under it.

I'm sure you don't need all these details but I'm sharing them anyway, it keeps me right.

While I was taking the tegreto alonel I was adjusting that myself with no ill effects but I haven't done it with the gabapentin, as I'm not too sure of it yet.

I am going back in another week to let the doctor know how I'm getting on and to make any other adjustments as required.

I'm going to run something passed you all and you can tell me what you think, because my hubby thinks I'm off my head with this.

Right now I am sore, not stopped in my tracks and yelping at the moon type sore but sore and accutely aware of it, more and more in the last week since I changed my dose.

Now that I am feeling my left side too, albeit not as often, I am tempted to come off the drugs for a spell, and it may sound silly to make myself feel this when I don't have to, but does it not make sense for me to be aware of what my body is doing without the sensory dampeners.
Would it not make sense to see how I cope and what I am feeling before seeing the neurologist so I can explain what's going on? My words keep getting stuck on my tongue, and I can't explain myself as I would like to, it maybe seems extreme, and it would involve another readjustment period while re starting them if I needed to, but I can't help but wander whether it is worth a shot, just for the sake of knowing in myself what is going on and being able to verbalise it for a while.

It keeps running round my head that I should try it, but really I don't know if I have the balls to risk the pain again.

Anyway I will call back soon, I hope you are all doing well and having pain free days, all my love for over the festive period.


Grace.***

[ToTs11]

Hi Grace,

Me stop my meds? not a hope in hell..
I once told Prof Zak if anyone tried to take my meds off me I would be up for murder!
You know the old saying if it aint broke don't fix it? I wouldn't stop your meds if I were you, the object of the meds is getting your pain under control even if your not pain free, (I have breakthrough every day) then at least get a grip on as much of the pain as possible.
You could also stop your meds and start a whole new ball game and cause a huge flair-up and then not be able to get it under control again, is it a risk your willing to take? I sure wouldn't and to be honest I doubt many here would be that brave.
I think your hubby is right, stick with your meds and take your time writing a list for when you go back for your next appointment.

Let us know how it goes.

Tracy x

[ella138]

I'm with Tracy, I wouldnt stop the meds either. You all ready know what it feels like without the meds. Have you forgotten already?
I was once on 400mg of Tegretol and had to stop because I developed a rash that the doc thought was Tegretol related. Within a day the pain returned with a vengeance. It was only a day or two until they discovered the rash was not Tegretol related. I went right back on the drug but 400mg no longer held the pain at bay. I had to go up to 800mg to get the same relief I was able to acheive just a few days earlier at 400mg. This is not a game...don't play. :eek:

[baywatcher]

Good advice they're giving you Grace. No way do I think you should stop the meds while you're in pain. Yes indeed, you go off and then when AAIIIIIIIIIEEEE you have to start again you may find that the old dose just doesn't do it at all. This rebound pain is no fun. Later, when the pain's been under control for a while and you are curious as to whether you might be going into remission (ah yes, the long ago days of remissions) you might want to taper. TAPER. At no time, now or later, do you just want to quit. Very bad news, that. It's too early for that, you aren't even settled down into a standard dose yet. If you want to be sure to tell your doctor everything, start a thorough pain diary now and if possible take a friend with you to help you remember all the things you want to ask or explain.

Nice not to have weather triggers. Blowy here and lots and lots and more lots of snow, and yes, I do have weather triggers. Drat. Hugs, Nancy

[grace.mackay]

Hello again folks,

I know you are all right about the why's of not stopping the meds, and I doubt I could really, maybe these are the "unusual thoughts" that the gabapentin warns about, I know it makes no sense to want to stop them, and it isn't about wanting to stop them as such, I think it's more a control thing, I don't like taking medication ( I know none of us do ) and I know I'm very suseptible to medication affecting me and subduing me, I recently discovered how much the pill alters my behaviour, and I have a government conspiracy theory about the pill and it's effects, but that's another story for another time.

I know that I'm feeling and behaving very differently on these drugs, and I'm not entirely comfortable with it, but it leaves me mostly pain free, and I guess it's a trade off I'm struggling with.

I can't afford to take any more time off from work, and that kind of a change would probably require lots of time to adjust, but really that's an aside, rationally there is no reason on this earth to stop taking these meds at the moment, I know that, I understand that and accept it, maybe it's just frustration or hormones or something, sorry for this, I guess I thought I'd just share where I was at.

Anyway, I have a christmas ball to go to, so must go and get ready. I will speak to you all soon.

***

[southerngirl]

I believe you've allready made your decision, which I hope is to continue the meds. I think all of us can agree that whatever med you are on it does alter your thinking among other things, and like you said that the trade off we have to accept. Its unfortunate but true. Maybe one day you can look into surgery as a way out but for now if you can't miss anymore work stay on the meds.
Hope you had a ball at the party and enjoy the rest of the holidays.
Catherine