Showing posts with label Tegretol. Show all posts
Showing posts with label Tegretol. Show all posts

Friday, January 04, 2013

I am a bit slow off the mark here, but I want to wish all of you a very happy new year. 
 I hope you all managed to enjoy the Christmas and New Year celebrations.

The week between Christmas and New Year, proved to be a crazy one for me. I had to increase my tegretol about three weeks before and fortunately, I had no adverse effects.

Obviously they decided to build up in my system for three weeks and then they hit me. And they really did hit me.


I had been feeling kind of “off” all day. This in itself was nothing unusual. I get days like this often. I call them my “side effect” days. Just a general horrible feeling which I find hard to describe and I put them down to the meds I’m on.

However, I went to bed early, slept on and off, then got up through the night to go to the loo. I felt a bit staggery when I got out of bed....again nothing that unusual. However, the staggering went to full scale balance loss. The place was spinning and I think I bounced off of everything in sight, eventually catching my leg on something which led me to fall into a heap on the floor.


Ian (yet again, poor man!) came running and picked me up and got me into a chair. He had thought that I had done my usual and tripped over something. But when I tried to explain that I was so dizzy, I found my voice had gone strange too.
 

When I did get back to bed, I think I lay their so rigidly, to try to stop the spinning, but I never slept a wink. Nor did Ian. I have to say I didn’t even think about the increase in my meds. I was scared.....I actually thought there was something seriously wrong with me. It was Ian who suggested that it may be a side effect and sure enough, on checking, it is listed there for higher doses. So dose back down, pain back up. Eventually, no more dizziness, but a few bruises to show for it all.



Oh, these meds.....so horrible having to take them. But I don’t know how I’d cope without without them.


Anyway I hope 2013 is better to everyone.




Monday, November 26, 2012

My Invisible Friend

It struck me this morning (literally, right across my cheekbone), that TN is like having an invisible friend. Except it's not really much of a friend.......more like an enemy.

It is there with me all the time. Wakes up with me. Goes to sleep with me. It comes with me to clean my teeth and absolutely hates me doing that and tells me so in no uncertain terms.

Actually, it's with me all the time. I even feed it with it's own special diet. Oh, it just loves those tegretol tablets. Cymbalta aren't so bad either. The amitriptyline.....well I don't think it's so keen on them. But I force them down anyway, despite the choking. My friend must cost the NHS a fortune.

I'm really getting a wee bit fed up of having this invisible friend. I try to be nice to it. I actually try my best to look after it. I don't treat it badly. So I don't know why it's being so nasty to me.

I am not wishing it to go visit anyone else, but I would like it to go away somewhere far away and not come back.

Maybe the next time they send an aircraft up on a mission to investigate Mars, they could take everyone's TN with them.....and leave it there.






Monday, July 23, 2012

Symptom or Side Effect?

I’ve been wanting to write this post for a while. It is something which I am sure most people like myself will recognize. We take so many strong drugs that it becomes more and more difficult to distinguish between the two - symptom or side effect.

We develop symptoms and nobody knows if it is something wrong with us, or if they are simply side effects of the drugs.

I think we all get used to side effects like a bit of weight gain, maybe some nausea, constipation, etc.....but if the drugs are helping the pain, it’s maybe worth putting up with those.


But there are also other side effects like constant tiredness, ringing in the ears, heart palpitations, that feeling of fuzziness in the brain, losing balance, the bad memory........the list could go on and on. Again, if the pain is being helped, sometimes we would rather put up with those too.

Those are some of my side effects......most people on these drugs suffer them too.

The strange thing for me is that if I am going through a better spell, I don’t suffer from the side effects as much as I do when my face is really bad. But when my face is playing up, so do the side effects. Strange?? I think it is.

This past week, I wasn’t having a good week with my face, and as usual, all those side effects seemed to flare up too. But my knees were also painful, along with my legs, ankles and even feet. Some mornings I have got up out of bed and felt that my feet couldn’t take my weight. (Maybe they don’t like the extra weight I have put on!)


Throughout my life, I have suffered from painful knees and other joint pains every so often. No cause found for it, but very painful. They eventually settle down again. But I think on top of everything else, it got me down a bit last week. Joint pains could possibly be yet another side-effect? The tablets get the blame for everything. But who knows....possibly I am just falling to pieces.


Actually, falling to pieces wouldn’t really surprise me as I have fallen so often recently.  I just seem to fall for no reason. Trip over my own feet! I think Ian is thinking about wrapping me in bubble-wrap before I get out of bed in the morning. I try to laugh it off and blame the tablets making me unsteady.

But it gets more and more difficult to laugh it off some days.



Wednesday, March 28, 2012

Patient or Carer???


Not been doing too good. Again.......yes, again!!!!!

Last week was a really bad week and by Friday night, I really didn’t know what to do, because the pain in my face and head was just so extreme. I could have cried, but that would have made the pain worse.

I ended up taking diazepam which helped me get to sleep. I woke up through the night with the pain, but thankfully the following day, it did start to calm down.

By Tuesday, when  I was feeling a good bit better, I had an appointment to see my GP.

Oh, I am sure her other patients must hate me. I must have been in her room for a lot longer than the allotted appointment time . She has increased my Tegretol now to the maximum allowed dose, and she is looking into another drug, should the Tegretol still not work. The problem is trying to work out how the new drug would work alongside the drugs I am on already. She'll figure it out. She has the patience of a Saint and tries so hard to help me. I can see in her face that she is actually disappointed when the meds don’t work. Not just from a doctor’s point of view, but she seems to genuinely care about me and my pain.

Back at home, that husband of mine.......well, where would I be without him? He’s down to earth, not all slushy and gushy, but when I am needing his help, he is right there. Getting tablets, making sure I eat, trying to help in whatever way he can. But most especially, trying to take my mind off the pain. Yes, he is still making me laugh. I am so grateful for that. Although, on Friday night, I really don’t think anything could have made me laugh. But he was still there by my side.

So......two carers. One, my GP; the other, my loving, caring husband.

Now, obviously, I couldn’t trade places with my doctor....I don’t have the qualifications for that.

But my husband, I have to say that I would never, ever want to trade places with him. I would rather keep the pain than give it to him. I would hate to do the job he does. I would hate to be the carer of a loved one. I don’t mean that I would hate to do the physical job of looking after my husband. Of course, I would do that. I would do whatever I was physically able to do for him.

I mean I would hate to watch my husband suffer from the pain of Trigeminal Neuralgia or some other form of chronic pain. I would be crying seeing him in that pain. I couldn’t try to distract him by making him laugh. If he was in so much pain that he was almost crying, I would do the crying for him.

So no matter how bad my Trigeminal Neuralgia or my back pain ever gets, I would rather take the pain than have the tables turned and watch him suffer from it. The physical part of caring is not the issue. It is the emotional part of watching the person you love most in the world suffer, knowing that you can’t rid them of their pain.

His isn’t an easy job. And I really don’t think that spouses or other family members who are carers get enough credit for what they do. At times, it must be physically tiring. But it also must be emotionally exhausting some of the time.

By the way, my husband doesn't read my blog, so I'm not just writing this so that he will read it and know that I appreciate him.  I am sure he already knows that. And the reason he doesn't read it - he says that he lives with me, he sees my pain every day. He copes with it all, but if he were to read my blog, actually read about my pain in black and white, he reckons he would hit a breaking point. Then he couldn't cope.

So, you see, the chronic pain patient doesn't get it easy. But I believe that their carer, if it is a loved one, doesn't get it too easy either.



Tuesday, March 13, 2012

Word Of The Day - JINX


And it wasn't used in Scrabble.

No, quite simply, it's me. I am a jinx.

Well, I had a few better days since my last med increase. My GP increased my Tegretol, and prescribed it in the slow release form. After a couple of weeks, I felt a difference. In fact, I was starting to feel like I could get my life back. I had less pain in my face and it felt so good. I even managed to do some drawing a few days ago. The pain hadn't gone, I don't expect it ever to do that, but it was better.

My only problem......I actually had the audacity to tell people.

I wanted to share it. I wanted to share it with people who care about me. I wanted to share it with people with the same problem, in the hope that maybe my combination of meds could help them.

Of course, after telling people, the pain has come back with a vengeance.

I suppose it's just like saying that we are having lovely weather, then we get rain the next day.

I just hope that this little nasty spell is just a little glitch, and I'll get my good days back. Please.....I did enjoy them. I didn't abuse it. I didn't go out in the cold or anything like that. I didn't eat ice-cream.

But, hey, it was nice while it lasted!




It was good, a few days with a bit less pain
But maybe I should have used my brain
But instead, I was happy, and wanted to share
So I told some people, the ones who care
It's happened before, so I should know better
But, no....I had to spell it out, letter by letter
Like I said, I was happy, and I wanted to share
Then it comes back like a punishment....it's so unfair!
I shouldn't have said anything, that's what hubby thinks
And I have to agree.......I am a JINX
E.S.


                 

Wednesday, February 29, 2012

Hope

My face wasn’t doing good last week. I mean, it’s never good, but last week it got worse. One day it just went off the charts for me.

This is what used to happen with my back. It would be bad, and I would learn to cope with it at that level. Then it would get worse, and I had to learn to cope with it at that new level.

I suppose that’s what living with chronic pain is like. It’s always there, so you kind of get used to it. Then it sends in a reminder. Just in case you had forgotten. If only..........

I felt like I had been coping with my face a little better before this last episode. I actually felt as though I was getting my life back on track. You know, like actually getting out of bed and getting dressed in the mornings. Then wham, bam, here we go again.


My GP had received a letter from the pain clinic a couple of weeks ago suggesting a new med for me to try. At that point, I was doing that bit better, and the thought of a new med actually scared me. Going through all the starting from scratch with it, the side effects, then of course, the big one - is it actually going to help?

My GP completely understood, and agreed with me. If I am doing ok on what I am on, there is no point in changing. Of course, the pain clinic hadn’t sent that letter just for the fun of it. It was because the pain clinic nurse called to see how I was doing a few weeks ago, right bang slap in the middle of a bad spell. So they were trying to help. It was shortly after I spoke to her that I had that little bit of a better spell. Then I get another bad spell. It can be like being on one of those rollercoasters. One day you're up, next your down. I guess I am just grateful for the 'up' days.

I am hoping that it was just a bad spell last week, and hopefully it will stay calmed down. Just now, it’s not too bad, but my teeth are feeling as though they are on the verge of going crazy. Or maybe that's just me......

But at least if it all does get worse again, then I know that there is another option out there for me. And I suppose it’s good to know that there are other options.

There have to be other options. And there has to be knowledge that someone is wanting to help.

But most of all, there has to be hope of finding a way out of this illness.

We need hope. A lot of hope.

We really need it.........

Sunday, December 11, 2011

Having a Bad Day


I really don’t get this.

I am on Cymbalta, Amitriptyline, Tegretol and use Lidocaine patches on my face and it still hurts so much.

I am adding in occasional pain killers and muscle relaxants.

How can I go on putting all those drugs into my body AND still live with this pain.

At one point last night I felt as though my head was in between a pair of cymbals. Both sides of my head were being hit. My temples were getting it. Then I got struck across my forehead every now and then. My teeth felt as if all the nerves were raw. I ate some mashed potato with cheese for dinner. It was warm, not too hot, but some went near the right side of my teeth. It hurt big time.

Today, the head pain has gone thankfully. But my right cheekbone hurts like I’ve been punched in the face. It’s just constant, from my cheekbone, right around my eye socket to the my temple. I feel like I have earache, but I know it’s just this Trigeminal Neuralgia. My teeth are bad. Two in particular......got that feeling of someone pulling them with pliers.

Plus the rib pain is still here. Just as bad, if not worse. The ultrasound scan was clear, so I know it’s nothing ‘inside’, but whatever is causing it is not nice.

I am so fed up with this.

Just give me one day of feeling normal.


Sorry for going on about it, just really needed to vent a bit.....