Tiny decrease in meds brings back shocks - is this normal?

General General TN & GPN (Old Site)
#1

Hi, I went to see the neurologist yesterday and she decided to decrease my dose of Tegretol because my side effects were unacceptable. I was on 800mg and she wanted me to come down to 600mg and add a new med in to replace it. However, she doesn't/couldn't prescribe. I was concerned because in the UK you can wait two weeks to see your GP, so I wasn't keen on my meds being reduced for two weeks in case it brought back old symptoms. I asked to reduce the tablets in 100mg doses and although she obviously thought I was mad (I should have explained but I was too sick to be clear) she said that was fine.

I honestly didn't expect much problem. One, I had been told many times that the drugs are cumulative in the system and I've certainly found this to be true. They are quite slow to act, so I figured they'd be slow to 'unreact' too. Two, I expected them to return to how they were at 600mg, and that had been fine, with no shocks, so I dropped one 100mg out my dosage yesterday as I'd promised.

Imagine my surprise when I felt better this morning. Great I thought, dropping that tablet has already eased the sh**ty side effects. Imagine my double shock when I then promptly got one, a shock, from drinking warm tea after a cold breakfast. Before meds (it's BM and AM for me!) this would be normal. AM, absolutely not. I would never have had a shock doing this at 600mg, and yet here I was, after removing one tablet, so still at 100mg more, i.e. 700mg, back to shocks. I was completely unnerved.

I went out as intended, still feeling a bit better from the change in meds, and went to a supermarket. It was a boiling hot day and inside the store was lovely and cool. By the time we hit the fruit & veg it was cold from the refrigeration and bingo, another shock, then another.

After that I had two more, at random times, including one just sitting on my sofa mid-evening, for no reason.

This has completely thrown/depressed me. What I want to know is, is this normal? Anyone else experienced this coming down/off meds? And did it happen so incredibly quickly?

There are lots of you taking med combinations on here. How did you make an effective transition from one med to another? I'll be honest, if this doesn't settle down in a day or two I am going back to 800mg and will put up with the nausea, drunkenness and profound stupidity/hallucinations until I see the doctor for my new meds. I find this a problem with consultants - they don't seem to be too great with how these diseases work in the real world. Either way, I am NOT going back to electric shocks.

Anyone - how did you transition?

#2

Many have lowered meds



And got prescription

For lidocaine face patches

And/or lidocaine mouthwash



In UK too!



Can get them from primary doctor!

There is a picture on here of Helen
…posted a picture of face patches on!

We do what we gotta do

: )

#3

This has happened to me in the past. I stupidly think I am feeling ok, so drop meds (very slowly as I know how bad it feels to quit them in one big go) and wham! pain starts coming back. I think its always a matter of judging for yourself what level of medication you can live with. As for changing from one med to another I have done this in the past and it did cause big attack. take Drs advice on how to do it. Hope all goes well for you.

#4

Claire,

I spoke with you before. I had Gamma knife but still take 200-400mg. of Tegretol.No pain 80% of the time.

I have never been able to go below that dose. Just last night I had to take an extra 400mg, because

a jabbing pain returned. There are times when I become agitated about a situation or there is an extreme weather

change ,it appears that I need to take an extra 200-400mg of Tegretol. this lasts for 24 hrs.The good news is I can always

drop back to my prophylaxis dose. Try dropping at 50 mg./week until you reach a comfortable level. You may never be

able to completely stop taking Tegretol. The combination of an individuals physiognomy and a compromised nervous

system leaves even more unknowns. Withdrawal is a complex issue especially since your body was at a rather high level.

Mine was ■■■■■■■■ before GN. But still requires a lower level dose. Hang in there move slowly..You may still have days

like I do, where there are jabs and tooth pain, I came off Gabapentin had a huge painful relapse. Tried again very slowly

and eventually came completely off the drug. Please keep in touch I am interested in your success.

Regards, Marv

#5

Also, if you haven't

go to groups tab above

Join UK group here!

#6

Lidocaine patches? I don't know those. Isn't Lidocaine a dental anaesthetic? I'll Google them then see if my GP can do them. Anything that helps! However, I have to say they seem to have settled again. I'm hopeful that my body's stabilised and it was just an immediate reaction thing. Fingers crossed. No way I am taking off the other 100mg until I see a doctor though. I am not taking any more risks of further disaster!

Kc Dancer Kc said:

Many have lowered meds

And got prescription
For lidocaine face patches
And/or lidocaine mouthwash

In UK too!

Can get them from primary doctor!

There is a picture on here of Helen
.....posted a picture of face patches on!

We do what we gotta do


: )
#7

Ah Clare, you're not making feel any better about this changeover! Surely if you are replacing one drug with another, the new drug helps to compensate? I am not stopping the Carbamazepine, just dropping it back to 600mg. I thought I'd replace the new drug in at the same speed as I dropped one tablet (i.e. one tablet out, one tablet in) and hopefully my body would be fooled? Or am I being overly optimistic?!

Clare said:

This has happened to me in the past. I stupidly think I am feeling ok, so drop meds (very slowly as I know how bad it feels to quit them in one big go) and wham! pain starts coming back. I think its always a matter of judging for yourself what level of medication you can live with. As for changing from one med to another I have done this in the past and it did cause big attack. take Drs advice on how to do it. Hope all goes well for you.

#8

Hi Marv, it's interesting (and a bit depressing) that you still need to take a preventative dose of Tegretol. Did the Gamma never leave you completely free of pain?

I, too, get, far worse pain if I am anxious. Unfortunately, with this disease being so new to me I get anxious a LOT, about everything, including having to change drugs. It's all first time for me. I'm a TN virgin!

I had already planned to do a low dose change over and sneak the new drugs in instead of the old. I'm hoping to completely fool my body!

Marv said:

Claire,

I spoke with you before. I had Gamma knife but still take 200-400mg. of Tegretol.No pain 80% of the time.

I have never been able to go below that dose. Just last night I had to take an extra 400mg, because

a jabbing pain returned. There are times when I become agitated about a situation or there is an extreme weather

change ,it appears that I need to take an extra 200-400mg of Tegretol. this lasts for 24 hrs.The good news is I can always

drop back to my prophylaxis dose. Try dropping at 50 mg./week until you reach a comfortable level. You may never be

able to completely stop taking Tegretol. The combination of an individuals physiognomy and a compromised nervous

system leaves even more unknowns. Withdrawal is a complex issue especially since your body was at a rather high level.

Mine was ■■■■■■■■ before GN. But still requires a lower level dose. Hang in there move slowly..You may still have days

like I do, where there are jabs and tooth pain, I came off Gabapentin had a huge painful relapse. Tried again very slowly

and eventually came completely off the drug. Please keep in touch I am interested in your success.

Regards, Marv

#9

Thanks, Kc! I didn't even know the groups thing existed. I've joined now and will have a good read.

Kc Dancer Kc said:

Also, if you haven't

go to groups tab above

Join UK group here!

#10



Woman with the electric teeth said:

Hi Marv, it's interesting (and a bit depressing) that you still need to take a preventative dose of Tegretol. Did the Gamma never leave you completely free of pain?

I, too, get, far worse pain if I am anxious. Unfortunately, with this disease being so new to me I get anxious a LOT, about everything, including having to change drugs. It's all first time for me. I'm a TN virgin!

I had already planned to do a low dose change over and sneak the new drugs in instead of the old. I'm hoping to completely fool my body!

Marv said:

Claire,

I spoke with you before. I had Gamma knife but still take 200-400mg. of Tegretol.No pain 80% of the time.

I have never been able to go below that dose. Just last night I had to take an extra 400mg, because

a jabbing pain returned. There are times when I become agitated about a situation or there is an extreme weather

change ,it appears that I need to take an extra 200-400mg of Tegretol. this lasts for 24 hrs.The good news is I can always

drop back to my prophylaxis dose. Try dropping at 50 mg./week until you reach a comfortable level. You may never be

able to completely stop taking Tegretol. The combination of an individuals physiognomy and a compromised nervous

system leaves even more unknowns. Withdrawal is a complex issue especially since your body was at a rather high level.

Mine was ■■■■■■■■ before GN. But still requires a lower level dose. Hang in there move slowly..You may still have days

like I do, where there are jabs and tooth pain, I came off Gabapentin had a huge painful relapse. Tried again very slowly

and eventually came completely off the drug. Please keep in touch I am interested in your success.

Regards, Marv

#11



Marv said:



Woman with the electric teeth said:

Hi Marv, it's interesting (and a bit depressing) that you still need to take a preventative dose of Tegretol. Did the Gamma never leave you completely free of pain?

I, too, get, far worse pain if I am anxious. Unfortunately, with this disease being so new to me I get anxious a LOT, about everything, including having to change drugs. It's all first time for me. I'm a TN virgin!

I had already planned to do a low dose change over and sneak the new drugs in instead of the old. I'm hoping to completely fool my body!

Marv said:

Claire,

I spoke with you before. I had Gamma knife but still take 200-400mg. of Tegretol.No pain 80% of the time.

I have never been able to go below that dose. Just last night I had to take an extra 400mg, because

a jabbing pain returned. There are times when I become agitated about a situation or there is an extreme weather

change ,it appears that I need to take an extra 200-400mg of Tegretol. this lasts for 24 hrs.The good news is I can always

drop back to my prophylaxis dose. Try dropping at 50 mg./week until you reach a comfortable level. You may never be

able to completely stop taking Tegretol. The combination of an individuals physiognomy and a compromised nervous

system leaves even more unknowns. Withdrawal is a complex issue especially since your body was at a rather high level.

Mine was ■■■■■■■■ before GN. But still requires a lower level dose. Hang in there move slowly..You may still have days

like I do, where there are jabs and tooth pain, I came off Gabapentin had a huge painful relapse. Tried again very slowly

and eventually came completely off the drug. Please keep in touch I am interested in your success.

Regards, Marv


Claire,

I am thankful to now take only 200-400 mg of Tegretol. Before Gamma Knife I was at times up to 1200mg. of Tegretol and at least 600 mg of Gabapentin. I am OK with this low dose. The Gabapentin is gone. Perhaps I might try to SLOWLY to remove theTegretol..

The drug has no side effects at 200-400 mg. as it did at the higher dosages. I am thankful that I can function now and be responsible to my family and friends. Perhaps my body has adapted to this lower dose. For eample I just had 2 wisdom teeth extracted with no pain or complications.

I truly appreciate your concern that I am not drug free. But, what I have I am thankful for. I truly hope you can experience a lower dose of Tegretol.

I am curious to know, when you find out, the new drug that your neurologist is prescribing.

Stay in touch,

Marv

#12

Same thing for me. Not unusual at all from what I understand. I am weaning off Carbamazepine(Tegretol) and going on Baclofen to see if I can reduce the terrible side effects. I understand your pain. Truly.

#13

Yea it’s like the body knows your planning a change and tries to stop it

#14

Hi Marv, yeah, I found the side effects of Tegretol at 200 and 400mg were much easier to handle. They only lasted about a week and then started improving. I wasn't even that bad at 600mg, so that's what she's putting my back down to. I think the new drug she's adding in is Lamotrigine. I looked it up, hopeful that it didn't have nausea as a side effect, but it does - boo! I don't know that any of the anti-convulsants would be free of that. I hate the nausea the worst.

I can't remember what dose she was going to put me on but I remember thinking it was pretty high, so I don't know if it's a milder drug. Anyway, we'll see what my GP says. Hopefully, I'll be more coherent!

Marv said:



Marv said:



Woman with the electric teeth said:

Hi Marv, it's interesting (and a bit depressing) that you still need to take a preventative dose of Tegretol. Did the Gamma never leave you completely free of pain?

I, too, get, far worse pain if I am anxious. Unfortunately, with this disease being so new to me I get anxious a LOT, about everything, including having to change drugs. It's all first time for me. I'm a TN virgin!

I had already planned to do a low dose change over and sneak the new drugs in instead of the old. I'm hoping to completely fool my body!

Marv said:

Claire,

I spoke with you before. I had Gamma knife but still take 200-400mg. of Tegretol.No pain 80% of the time.

I have never been able to go below that dose. Just last night I had to take an extra 400mg, because

a jabbing pain returned. There are times when I become agitated about a situation or there is an extreme weather

change ,it appears that I need to take an extra 200-400mg of Tegretol. this lasts for 24 hrs.The good news is I can always

drop back to my prophylaxis dose. Try dropping at 50 mg./week until you reach a comfortable level. You may never be

able to completely stop taking Tegretol. The combination of an individuals physiognomy and a compromised nervous

system leaves even more unknowns. Withdrawal is a complex issue especially since your body was at a rather high level.

Mine was ■■■■■■■■ before GN. But still requires a lower level dose. Hang in there move slowly..You may still have days

like I do, where there are jabs and tooth pain, I came off Gabapentin had a huge painful relapse. Tried again very slowly

and eventually came completely off the drug. Please keep in touch I am interested in your success.

Regards, Marv


Claire,

I am thankful to now take only 200-400 mg of Tegretol. Before Gamma Knife I was at times up to 1200mg. of Tegretol and at least 600 mg of Gabapentin. I am OK with this low dose. The Gabapentin is gone. Perhaps I might try to SLOWLY to remove theTegretol..

The drug has no side effects at 200-400 mg. as it did at the higher dosages. I am thankful that I can function now and be responsible to my family and friends. Perhaps my body has adapted to this lower dose. For eample I just had 2 wisdom teeth extracted with no pain or complications.

I truly appreciate your concern that I am not drug free. But, what I have I am thankful for. I truly hope you can experience a lower dose of Tegretol.

I am curious to know, when you find out, the new drug that your neurologist is prescribing.

Stay in touch,

Marv

#15

Hi Patty, thanks for the sympathy. I'm just praying I can fool my body by slipping in the new drug in a crafty way as I slip out the old one!

Patty said:

Same thing for me. Not unusual at all from what I understand. I am weaning off Carbamazepine(Tegretol) and going on Baclofen to see if I can reduce the terrible side effects. I understand your pain. Truly.
#16

Hi Minty, yeah, I know what you mean. I spent the whole day of the electric shock return and the day after convincing myself I was perfectly safe, that I was still taking 700mg of Tegretol, that it was still working, and bizarrely I think it worked. I probably calmed myself down, which helped, but I reckon my brain needed convincing too! I plan to do the same thing when I introduce the new drugs, in small increments, and convince my brain that the new drug is even more powerful, like I'm talking to a nervous four year-old. It's a sad plan but it's the best I can do!

Minty green said:

Yea it's like the body knows your planning a change and tries to stop it
#17

In the UK group…find helen…

Ask about the patches…how…where…etc

Its a good backup plan.

: )

#18

I'll go do that now, Kc, thanks!

#19

Where are you getting the shocks ?

Are you still suffering extreme tooth sensitivity from the recent opened tooth, now with filling ?

#20

Hi Dallas, I'm getting the shocks in the usual locale, lower right teeth. And yes, the tooth sensitivity is still very much present, a little worse now the dose has gone down a tad. But that's not unusual; so far we haven't had the meds high enough/ right enough to get rid of the sensitivity, although I have had the odd freak day without it. Notably, the day immediately after lowering my dose, I was blissfully free of sensitivity, then the shocks came back! So I learned yet one more thing, that the sensitivity seems to step in when the shocks go, or the sensitivity disappears/diminishes when the shocks come back. They have settled again though, which is great. I really only had that one day, post decrease.

Why do you ask?