I was on Carbamazepine for about 8 years, but had horrendous side effects. So I was changed to Lamotrigine which worked brilliantly for 5 months. Now this past week I am right back where I started, with serious pain. I can't get to see gp till the 19th May. I am on 125mg twice a day, but have started taking more, just to keep the pain away until I can get some help.
TN really is hell.
Tried lamotrigine several years ago. Not only did it not help much, it interfered with my ability to think rationally, remember anything and gave me horrible joint pain in my knees. I had to have chair height toilets installed because it hurt too much to sit on a regular height one. All of which went away when the drug was D/C/d. Just my personal experiences....we are all different. Good luck.
Thanks Not Again. I'm so tired but afraid to go to bed. I think my only way forward is surgery called an arterial pexy operation. It's a last resort and very rare but of course I'll have to go a waiting list, so it could be ages away. What is the maximum safe dosage for Lamotrigine?
I have never heard of this procedure for TN. What I Googled referred to a surgery involving the VII cranial nerve....TN is the V cranial nerve. Where do you live?
chusty said:
Thanks Not Again. I'm so tired but afraid to go to bed. I think my only way forward is surgery called an arterial pexy operation. It's a last resort and very rare but of course I'll have to go a waiting list, so it could be ages away. What is the maximum safe dosage for Lamotrigine?
Well I got through the night. These are extracts from the neurosurgeon's letter. 'The MRI scan shows a massive right vertebrobasilar ectasia. This is compressing the 5th nerve and the 7th/8th complex on the right side'. Further on he says 'The only solution is an arterial pexy operation. Partial thickness sutures are used to pull the blood vessel away and fix it to the dura in front of the clivus'
It's a very rare and complex procedure. I also haven't been able to find anything on Google about it. The surgeon has a very good reputation, so although it's scary I think I have to go for it.
How is your pain. What are you taking to keep you pain free?
I live in Sheffield UK, where are you?
Glad you had a tolerable night. I hope you were able to get some actual rest! Interesting MRI results...you have a massive dilatation of the vertebrobasilar arteries that is compressing not only the trigeminal nerve, but the facial and vestibulocochlear nerves as well. Yikes. I understand why surgery would be the only option to fix it. What kind of pain do you have & where?
I live over the pond in Oregon. Moved here 11 years ago after spending my life in Ohio. I know surgery is scary....it's not too bad though. I had an MVD in 1998 and then a repeat in 2006 and Gamma knife in 2007. I was pain free between the first two surgeries and then for about 9 months after the second. The Gamma knife did nothing for me. I have tried all the usual meds (tegretol, trileptal, lamotrigine, keppra, baclofen, lyrica, etc,etc. Nothing has worked well enough to make the drug's side effects worth it. For the past several years I have just been on low dose (20 mg/day) extended release narcotic to make the pain tolerable enough so that I don't want to kill myself or someone else. It is never totally gone. That is soon to change though. Thanks to all the idiot drug abusers in this country, the CDC/FDA is making rules that threaten Drs. licenses to practice medicine for prescribing extended-release opiates to non-cancer chronic pain patients. I hope each of them has to suffer from this wretched disease! I have been switched to plain, short-acting oxycodone now and I worry that my pain is going to be out of control again soon :(
What is your age. I was 50 when I had the first MVD and 59 & 60 for the others.Do you have a good suppport system?
Wishing you a better day today.
Chusty said:
Well I got through the night. These are extracts from the neurosurgeon's letter. 'The MRI scan shows a massive right vertebrobasilar ectasia. This is compressing the 5th nerve and the 7th/8th complex on the right side'. Further on he says 'The only solution is an arterial pexy operation. Partial thickness sutures are used to pull the blood vessel away and fix it to the dura in front of the clivus'
It's a very rare and complex procedure. I also haven't been able to find anything on Google about it. The surgeon has a very good reputation, so although it's scary I think I have to go for it.
How is your pain. What are you taking to keep you pain free?
I live in Sheffield UK, where are you?
It sounds like you are having a bad time as well. At least we have the National Health Service here, so don't have to worry about the cost. Do you have any further options, given that the ops haven't been a success, and meds are restricted?
I am doing better since I increased the tablets. I now take 3x 100mg at 8am, 2pm, and 8pm. Plus 25mg in between if the pain breaks through. I am not happy about the increased dosage, but I have to keep the pain at bay until I can see the surgeon. I am getting really sharp pain along the jawline, like electric shocks, very unpleasant. Is that the type of pain you are getting?
I had a really good night last night, slept right through to 7am. Do you manage to sleep well?
Glad you had a good night...and that the medication is working for you. I am out of options. The neurosurgeon said any further surgery is out of the question and any of the other things (like glycerol injections, etc) would in all likeliness make things worse. I am hoping some new meds are developed that don't have horrid side effects and actually work for me. My pain is mostly in my left eye and one missing tooth. There is a constant dull boring pain accompanied by intermittent bouts of sharp pain, like a hot ice pick being stabbed in my eye. The tooth pain feels like a hot poker being shoved into the root of the tooth (although I had the tooth pulled some 20 years ago). Basically it's just the first and second branches of the trigeminal nerve that are affected for me. I am dreading the day that it starts to affect the third branch and I get the jaw pain. I guess I should be grateful for the 8+ pain free years I had after the first surgery. Wishing you well and a Happy Mother's Day (if applicable).
chusty said:
It sounds like you are having a bad time as well. At least we have the National Health Service here, so don't have to worry about the cost. Do you have any further options, given that the ops haven't been a success, and meds are restricted?
I am doing better since I increased the tablets. I now take 3x 100mg at 8am, 2pm, and 8pm. Plus 25mg in between if the pain breaks through. I am not happy about the increased dosage, but I have to keep the pain at bay until I can see the surgeon. I am getting really sharp pain along the jawline, like electric shocks, very unpleasant. Is that the type of pain you are getting?
I had a really good night last night, slept right through to 7am. Do you manage to sleep well?
I saw my gp on Friday, after she had spoken with hospital medics. They say I must not take more than 125mg in the morning and the same again at night. They will do nothing else until I have done this. They aren't interested in my having an operation. How I wish the doctor I saw last time was still there! I just feel they have no idea what TN is like and how unbearable it can be.
I have done as they said, only 125mg at 8am, and after 10am I have been in constant pain, small jabs interspersed with really vicious ones. I had to give in and take a further 100mg at 2.30. As well as along the jawline I am now getting it in my eye. So, like you, I don't know what to do next.
Oh dear.....I am so sorry. I remember when I was put on lamotrigine that it was very important to titrate the increasing dosages very slowly. Perhaps that is why they told you to limit your dose. But in the meantime, you should have something to help with the pain. I wish I had some suggestions to offer. If it were me, and I was having so much pain despite following Dr's orders, I would go to the ER.....but then I do not know how your NHS works. Wishing some relief for you.
chusty said:
I saw my gp on Friday, after she had spoken with hospital medics. They say I must not take more than 125mg in the and the same again at night. They will do nothing else until I have done this. They aren't interested in my having an operation. How I wish the doctor I saw last time was still there! I just feel they have no idea what TN is like and how unbearable it can be.
I have done as they said, only 125mg at 8am, and after 10am I have been in constant pain, small jabs interspersed with really vicious ones. I had to give in and take a further 100mg at 2.30. As well as along the jawline I am now getting it in my eye. So, like you, I don't know what to do next.
Here I am again. The last few days have been horrendous, with almost constant unremitting pain. It seems to be everywhere now, jaw, eye, and somewhere in between, But the last could have been because the jaw and eye were so painful. I spent an awful lot of time just sobbing, I'm surprised I have any tears left.
Anyway my nephew came and took me to A+E (Accident and Emergency) at the hospital. It was a 5 hour wait but I now have Amitriptyline as well as the Lamotrigine. I hope they work.
You asked me how old I am and I forgot to answer, I will be 69 this August. Never thought I'd get this far, we are not a very long lived family.
That was all about me, but how are you? Is there anything left for you to take? It seems awful to have no place left to go.
So sorry you have had to endure such horrible days. It's not easy at our age (I will be 68 in July). Let me know how the amitriptyline works for you. That was one of the first meds I tried many years ago.....but it made me so sleep & groggy I couldn't function at work the next day. Maybe it would help now,since I am retired and it doesn't matter if I am groggy during the day...lol
I talked my doctor into delaying the medication change until next month. As it turns out, the change would have occurred in the middle of next week, while I am in another state visiting family and attending my brother's Memorial service. I didn't think a time of high stress would be a good time to make a medication change and she agreed. So at least I have another month of fairly good control over my pain. After that...I'll just have to see what happens.
Please let me know how you are doing with the amitriptyline. I hope it helps. Do you have a good family support system? Do you live alone? Wishing you better days ahead!
chusty said:
Here I am again. The last few days have been horrendous, with almost constant unremitting pain. It seems to be everywhere now, jaw, eye, and somewhere in between, But the last could have been because the jaw and eye were so painful. I spent an awful lot of time just sobbing, I'm surprised I have any tears left.
Anyway my nephew came and took me to A+E (Accident and Emergency) at the hospital. It was a 5 hour wait but I now have Amitriptyline as well as the Lamotrigine. I hope they work.
You asked me how old I am and I forgot to answer, I will be 69 this August. Never thought I'd get this far, we are not a very long lived family.
That was all about me, but how are you? Is there anything left for you to take? It seems awful to have no place left to go.
Sunday, and still having pain, so back to the doctor and I now have Tramadol as well. And still the pain is getting through. Will nothing stop it. The gp is also going to write to the surgeon about having the op. Although it scares me, I really want to go ahead with it.
How are you doing?
Hi there -
Hope by now you are doing better with the addition of tramadol. That one never really did much for me. Sorry it's taken me so long to respond, but I just got back from a week in Texas spending time with my niece and preparing for my brother's Memorial service. It was a really stressful week, but I only had a couple of breakthrough pain spells...so I was grateful for that. Giving his eulogy was the hardest speech I have ever given (I used to lecture to graduate anesthesia students). Glad that is over now. Just trying to recover from jet lag...Texas is in another timezone that's 2 hours ahead of my time zone. Plus I didn't get very much sleep...let alone restful sleep.
I talked my Dr. into extending my time on extended release medication until next month...but still not looking forward to changing things. I don't know why they want to rock the boat now that I am finally in a period of fairly smooth sailing. Well I do know.....it's because of the widespread abuse of pain meds (and OD's) here....but they are really punishing the people who need and use their meds properly :( The druggies are still going to manage getting stuff on the black market..the way they do now. I swear that idiots run the CDC.
Please let me know how you are doing.
chusty said:
Sunday, and still having pain, so back to the doctor and I now have Tramadol as well. And still the pain is getting through. Will nothing stop it. The gp is also going to write to the surgeon about having the op. Although it scares me, I really want to go ahead with it.
How are you doing?
Thank you
about to start
Pill in hand.
Please Dear Lord-make it work!
Good luck Ellen! Let us know how it goes.
You ever make this into topical?You the pro on this site-probably
everywhere!
Ellen5, lām hoping the new med works for you.
Hi Pacey and Ziggy and all the rest.
I have not slept for 2 nights.On 25 mg of the lamotrogine in the evening.
I have been up in so much pain since 4AM
I cannot stop crying.
It is like the cymbalta-but at least the cymbalta decreased the pain.Not ramped it up
I cannot do this much longer.
Please pray for me.
Thanks
And before anyone says to contact the doctor-next appointment in 6 months-and no contact info.New doctor.
Does anyone have this experience?
Does it get better?
Taking it in the morning wonāt work because next week I am supposed to do both.
(please insert swear word of choice)
Oh Ellen, I am so sorry to hear! If the new medication is making things worse, I would quit taking it. On to the next medicineā¦
Thatās ridiculous that you have no contact infoāgot to be a way to get back in touch! Can you just walk into the office and talk to receptionist?