What do you do when the meds stop working

1

I'm at a lost and I'm definitely at the end of my rope. Tegretol worked a treat during the first attack until I developed an allergice reaction. Then lyrica was the magic pill, it saw me all the way through the rest of the first attack all the way through the second but only last a week into the third attack (18 months later) I kept increasing the does until I was on 750 mg (way above the max) and it was doing nothing.

Doc then prescribed sodium valproate - which were completely useless. The hosptial the presecribed Neurontin (Gabapentin) which is doing nothing either, so they've double the does to 600 mg 3 times a day. But it still hasn't made any difference.

The only thing currently working is voltaren suppostitries which for a couple of hours reduce the pain by a good 50 - 60%. And rivitril (clonazepam) at night to help with my neck pain - which I'm sure is caused by muscle spasms from all the crying and pain).

The hopsital just want to fill me with morphine which does nothing, it doesn't even put me to sleep. So, apart from all the morphine they injected intrevenously today I've decided to stop all oral morphine as of now.

My question is, is there another drug out there I can try to block the nerve pain. I'm on the list for surgery but because I'm a public patient it could take 8 months. And I truly cannot survive another 8 months of this .

Any Aussies out there no how much it would cost to see a neurosurgeon privately - if you've got no cover. The last hospital doctor rang the other hosptial and the neurosurgeon said he'd see me in a week, then rang back the next day to say I was a public patient and would have to wait

Also the trouble is, the first time I saw a neurologist my attack had ended 2 months before so he refused to do an MRI (I believe a special sort is in order) because he said there'd be nothing to see now. I'm afraid the same thing will happen again if I wait until I can get an appointment.

Sorry if I'm rambling, put it down to pain and meds. Hope I've made sense.

2

You are making sense. I am also at the end of my ropes medication wise. Since I have Type II symtoms, surgery would most likely be ineffective and make things worse from all I have read.

Morphine may would help a Type II patient, whereas it may be ineffective for Type I, as it seem that you suffer from. I would love a prescription for Morphine to try, as the Oxycodone is not working at the dosage I am given.

I wonder if you have tried Neurontin/Gabapentin? This is the best drug I have found for the spasm type pain that I have.

Just speaking from personal experience, Methadone has been the only thing so far which has provided me long lasting relief and the ability to lead an near to normal existence. Finding a doctor to prescribe it in the states is hard. I do not know the availability of it in your area.

I'm just sharing what has worked and has not for me. However, with your being a Type I patient, as it would seem, that Classic TN sufferers would respond to your discussion. . . .

Sending good vibes, and prayers for healing and compassionate care your way.

I wish that you weren't having such a hard time with this. This disorder takes away so much, and it takes a real fighter to stay positive. But, you will read success stories here. I have. Here's hoping you find your miracle which would free you from this state.

All the best wishes for a pain free day,

Stef

3

It's interesting what you say about morphine. I've been diagnosed a Type I (which I'm sure I was first time round) but the last two attacks are constant, unrelenting pain only made worse when an additional attack is triggered (which can happen several times in a few minutes) the only time I'm pain free is when I'm asleep, but I don't sleep much as laying down triggers an attack, so I tend to doze sleeping in chairs.

Anyway, back to the point. Now my pain is contanst I thought I'd now be a Type II but as they seem to pump morphine into me at an alarming rate (6 intrevenously one after the after) and 2 fentanyl one after the after with 0 effect - then send me home with massive does of oral morphine (ms contin and endone - oxycodone), again with no effect. So, maybe I really am a Type 1 after all.

I'm on Neurontin now ( having given up on tegretol (which did work until I became allergic) then Lyrica, which was the best but by the 3 rd attack stopped working at all, sodium valproate which was completely useless and Neurontin which I'm not finding helpful at all, but they've just doubled the dose to 600mg 3 x a day so maybe that might start working.

So far the only thing I'm finding even slightly helpful this time around is volatern suppositories (which completely surprised me) and clonazepam. Neither get rid of the pain but the voltaren at least reduce it enough for me to think I can make it through another day and the clonzapam which I take at night, it helps me to relax so I can try and sleep and has the added benefit of helping my throat. I think I get so much pain and cry so much during eating or attacks that my neck muscles on that side get really sore, to the point that even swallowing hurts.

Anyway, thanks for the help, especially with Type 1 affirmation. I'll try over there. And here's hoping that maybe they'll find something that will help all versions of this thing as it is not something you'd wish on your worst enemy. Though sometimes I can't help wishing I'd could transfer the pain to a few doctors so they could feel what it's like and come up with something more helpful than (we have nothing to offer you, go home).

PS I'm in Australia so not sure about methadone, I've heard of it in rehab clinics here but not sure it could be prescribed by doctors, it's certainly nothing they have mentioned.

4

Hi Liz,

During my most recent attack last November, I was admitted to hospital for the first time having suffered from type 1 for around 8 years. I was quite literally screaming with the pain (my worst ever attack). They injected me with morphine and gave me it orally in a liquid form. It only served to intensify the pain because the pain became the only thing I was conscious of. Eventually, through a combination of Tegretol, Gabapentin, Baclofen and Amitriptyline in tablet form and Pethidine injected into my thigh, the pain disappeared.....or did it just settle down of its own accord as it has done in the past. I have been pain free since that time, the down side being that I remain on high doses of the above meds with the exception of the Pethidine and will remain so for the foreseeable future. My neurologist asked me which drug I thought was helping most and there’s the rub, I haven’t a clue. I got the impression she would have told me to stop or cut down on the Gabapentin if I’d been open to it. I’m very much of the view that one should ‘let well alone’ because the memory of my last bout of pain is still very raw.

I know this may not be much help, but the point I’m making is that I had two weeks of the most horrific pain imaginable when I would have happily shot myself and I’ve now been pain free now since last November. There’s always hope.

I have an appointment to see a neurosurgeon next month, but I’m not inclined towards surgery at this time. My position may change if the pain returns.

Regards

Jim

5

Hi Jim

Sorry for the delay in replying - still not coping terribly well but I'm a bit better today. At least today the pain isn't constant. My first attack was easier to deal with as the pain went away after each attack. I could set my watch by the attacks, they came every hour and lasted for 15 minutes. 15 minutes of hell with nothing that would ease it at all and me always ending up saying "I can't take it anymore, it's not possible" and yet I did. I know it lasted about six months altogother and I kept taking the drugs but during the last two months I'd delay taking them to see if an attack was triggered, as soon as I was able to delay the tablets for a day I stopped taking them altogether. It was over a year before the next attack.

I'm so glad you're pain free now and I hope you will be able to come off the meds soon too. I just found out I have an appointment with a neurologist next week. Hopefully that will lead to the appropriate MRIs being taken then a neurosurgeon. The thought of brain surgery scares the daylights out of me, especially as I've had attacks on both sides of my face. But, as you said, at the height of the attacks I'd would have done anything, and I did say on more than one occasion 'shoot me and put me out of my misery'. So I figure if I was willing to do that then I should be more than happy to have brain surgery. Of course, I know it's not that simple, and I'd be scared but I simply do not think I could endure a 4th attack - and I'm not even remotely clear of the 3rd one yet.

I think we are the best judges of the medication. I've stopped taking all the things that don't work - like ms contin and endone. They provided no benefit and I didn't want to end up being addicted to something I didn't need.

The Neurontin I think is slowly having some effect now that it's been doubled (600 mg), the panadol ostea I think is a waste of time but they are insisting I stick with it because it will have a long term effect on the other drugs. So far the mot helpful is voltaren 100 (suppositories) yuck! I hate them but they do ease the pain after about 20 minutes - though it has not effect on the secondary waves of attacks that keep coming.

In the past all I needed was one med - either carbamezapine (until I became allergic) or lyrica. Unfortunately the lyrica stopped working in the second week of this attack and no other (normal anti seizure) med has had any effect.

But I am feeling better and more hopeful, thanks to people like you, and now that I'm not in continous pain. I can see a light at the end of the tunnel. Strange that now I'm hoping this attack lasts another month so there's something to see on the MRI ;)

It is interesting to read and hear so many people having the same problem but finding different solutions. I've never heard of some of the things people have mentioned. But it is good to know that there's always something else to try. :) Thank you for the support, Jim. I wish you well and continued freedom from this monster.

Regards

Liz

PS I've had to edit this 10 times, my mind is still scrambled from all the meds ;)
6

Hi Liz - I take 600mg twice a day of Trileptal (oxcarbazapene - probably spelled wrong) and it works very well for me. I also supplement with omega oils, CoQ10, curcumin and b vitamins. Generally that will keep me down to a few shocks a day and no long term attacks. Prior to sorting out this regime I would have attacks that lasted hours sometimes. I haven’t had a single attack like that in months now.

I wish you all the best in finding some relief.

Todd

7

Hi Liz,

I am also an Aussie - I live in Canungra, SE QLD. I have both type I and type II and am bilateral with the TN.

If you ever want to talk, I can pm you my mobile number if you like?

I am also a public patient - but have purchased a private appointments with both neurologists and neurosurgeons, the neurosurgeon is CHEAPER than the neurologist.

Where abouts in Aust are you?

I would like to chat more with you and maybe we can help each other here regarding meds in Australia.

Hope to chat soon!

Cheers,

Kerry xx

8

Hi Kerry, sorry for the late reply - it's been a bad day, back to continuous pain with additional waves. It's seems ridiculous but I went to have a cat scan today (I told them it would be pointless) but I had to insist on wearing a wool hat and a woolen scarf over my face - they make those rooms soooo cold, even though it was over 30 degrees outside.

I'm in SA about 30k out of Adelaide. Not sure my mobile account would handle ringing Qld too often ;) do you have skype? It's a free way of talking, I talk to my Mother in France using it.

I'm not too used to this forum but I gather if I click on message instead of reply it's private? As you can probably tell I keep some weird hours sometimes, but particularly when I'm dealing with this thing. Look forward to hearing from you :)

Liz

9

Hi Todd,

Forgive me, but I thought I had responded to you. Maybe I did it privately by mistake, seriously these meds are doing my head in, so please forgive me if I didn't end up responding. I have heard of a few of those things but not the others, I've definitely got lots of questions to ask my doctor and neurologist about thanks to people like you :)

I'm so glad you've found something that is working - at least for the most part. I'm truly hoping I will find something soon. I hate being so despondent but relentless pain is soul destroying. I don't know how many times in the past few weeks I've said "I can't take it any more" but, what else can you do. I wrap a few more layers of scarf around my face, take some more meds, sit on the lounge and cry like a baby - making things much worse of course ;) and then occassionally one of the meds might kick in a little or the waves slow down a bit, or I finally fall asleep from exhaustion. Then I wake up in a couple of hours and start all over again ;)

I am taking a vitamin but I can't see that it's doing much, I'll see if I can find out about yours. Though I must say these meds are costing me a fortune. At least I learned the hard way that you should shop around. I paid $150 for my gabapentin only to find the chemist around the corner sells it for $70! At least I'm learning something new every day ;)

Nice to talk to you and I wish you continued and increasing good health :)

Liz

10

MEDS NEVER WORKED AND SO I HAD THE MVD LAST WEEK,I AM OUT OF HOSPITAL AND DO NOT SEEM TO HAVE HAD A BAD TIME AND THE SURGEON IS VERY PLEASED,JUST FEEL I HAD A BANG ON THE HEAD. ALTHOUGH I WONT KNOW FOR A FEW WEEKS I AM OPTIMISTIC…WHAT I AM TRYING TO SAY IS THAT IF THE MEDS DON;T WORK YOU ARE LEFT WITH MANY CHOICES OF SURGERY WHICH YOU CAN DISCUSS WITH YOUR CONSULTANT

11

Thanks Steve, glad things went well for you. Hopefully it will be a permanent result. Yes, it is good to know that there is something else out there, though surgery seems to take awhile, I still have to wait to see my neuro and get an MRI, they wouldn’t take one the first time as they said it might be a one off attack. The way I’ve felt the last 2 days I would willingly have undergone surgery without the MRI but my GP has me on new meds, only taken one so far but it’s the best I’ve felt in weeks (as long as I don’t touch a trigger point, eat, or have a cold breeze blow on me :wink: Fingers crossed this one will last a few weeks as I’m sick to death of crying my eyes out during every meal.

12

Hi Liz -

I have had the same problem with medications being ineffective. I have been on Gabapentin, Cymbala, & Trazadone...all with no success or allergic reactions. I take Topamax every day for headache prevention and Maxault if the headache can't be stopped and turns into a migraine. I currently take Trileptal and Lyrica for Atypical TN. My pain in constant....every minute of every day.

I am the "side effect queen" of medications. If there is a side effect to be had on any medication, I will get it, so I have to be careful of what I take. In the past month, in addition to my medications, I have added acupuncture. I have found that, at least for a few hours on the days when I have my appts, my pain is very minimal. As the day goes on, it will increase...but for a few brief hours....while I am not pain free....I have less pain....and that is good.

My neurologist said that she can no longer do anything for me as she has given me all the medications she can think of to help me with my TN, but I am not responding like her "other patients do" to nerve medication (gee, thanks). So, I am going to see a professor of neurology who specializes in TN at the University of Chicago. I see him on March Ist. One of the medications that he lists in his biography is Misoprostol (also known as Cytotek). There is a statement under one of the neurology dr's at the U of C that states..." The group has shown that Misoprostol (Cytotek) abolishes trigeminal neuralgia..."

Here is the link: http://www.uchospitals.edu/physicians/anthony-reder.html

Dr. Anthony Reder is a colleague of the dr that I am going to see on Tuesday and I plan on asking about this medication. There is nothing that I can find on the internet about the drug Misoprostol and it's connection to TN whatsoever...but I will take any miracle in whatever form it presents itself. I don't know if anyone else knows or has heard about this medication....so I am tossing it out there for discussion and help for us all.

Hang in there Liz....if you can...try acupuncture...that may afford you some kind of relief without any side effects and the relief should be immediate.

Prayers to you, dear....

Barbara


13

Hi Barbara,

I think if we could swap half and half we'd be half way there ;) I seem to have little to no side effects on medication. In fact, no matter what they slam me with they just don't work, maybe that's why I don't get any good or bad side effects. I did have one reaction to carbemezapine when they increased it too fast - vomiting, slurred speech and couldn't walk straight but that went in a day when they adjusted my meds.

Wow, can't believe anything is able to abolish TN but it certainly sounds like it's worth a try. The hospital did suggest accupuncture too which I'd be willing to try but at the moment my face is way too sensitive to touch so I'm not sure I'd be a good candidate until things settle a little - this is assuming they put the needles in your face?

There seems to be a few drug treatments for other diseases that help us but I wish they'd actually make one especially for this disease.

I have had to buy a medication book (due to my rheumatoid arthritis drugs - most medications don't list sun sensitivity and I ended up with a sun nevus) and I found your Misoprostol in it - assuming it's the same drug (I'm pretty sure it is). I'll try and type it up but it's pretty long... nothing in there about TN and not sure if you already have this info but just in case. Plus a few links (haven't checked them yet) to pages that talk about the TN being helped by misoprostol.

Good luck with your appt. I hope and pray it goes well. I don't believe for one second that's nothing they can do to fix this pain, there's always something else that can be tried.

Sorry this has turned into rather a lengthy missive ;)

Take care,

Liz

Misprostol and TN together

http://www.ncbi.nlm.nih.gov/pubmed/12736732

http://facial-neuralgia.org/treatments/drugs/misoprostol.html

http://linkinghub.elsevier.com/retrieve/pii/S0278239106013851

http://www.lawhern.org/literature_review_TN.htm

http://www.worldlingo.com/ma/dewiki/en/Misoprostol

http://www.ncbi.nlm.nih.gov/pubmed/7783870

http://www.tna-support.org/Articles/Medical%20treatment/misoprostol_in_the_treatment_of.htm

------------------------------------------------------------------------------------------------------------------------

MISOTPROSTOL (My-so-pross-toll)

Drug Class: Synthetic Prostaglandin - Anti-Ulcer

Brand Names: Cytotec, Arthrotec (with diclofenac)

Schedule: S.4

What is it for ?

Misoprostol promotes the healing of peoptic ulcers in the stomach or duodenum (first part of the small intestin) that affect 20% of the population at some point in their life. Treatment with misoprostol may rduce the incidence of serious complications, including bleeding and perforation of the intesting or stomach. Misoprostol is as effect as cimetidine in uslcer healing does not relieve ulcer pain as quickly....

[More ulcer stuff that probably isn't helpful]...

Ther is some evidence that misoprostol is effective in rduce the loudness of tinnitus sounds and that this translates into a subjective feeling if improvement in the condion.

How does it work?

Prostaglandins are locally acting hormones that participate in a wide variety of body functions. Natural prostaglandins are rapidly broken down in the body. Misoprostol is a synthetic form of the prostaglandin PGE-1 whose action it mimics in the stomach. The drug reduces acid production, stimulates the secretion of mucus (which lines the stomach to protect it against acid and digestive enzymes), and alters the composition of the mucus to increase its resistance to the difusion of noxiious substances.

Don't use this drug..

  • pregnant or attempting to become pregnant
  • allergic or hypersensitive to misoprostol, or prostaglandins

Before you take this drug...

  • accurate diagnosis of stomach ulcers by endoscopy to exlude the presence of cancer is essential.
  • tell your doctor if you have any of the folloing conditions: asthma, epilepsy, heart disease, or disease of the blood vessels to the brain. Although not reported misoprostol, adverse effects have occured in some individuals with these conditions when they took other protaglandin type drugs.

Dosage forms and strengths

Tablets 200 microgram

Adults: 200 microgram, 4 times daily, or 400 micrograms twice daily

How to take the drug

Take the tablet following meals and at bedtime. Symptoms may take a week or more to be relieved. 85-90% of duodenal ulcers, and 50-75% of stomach ulcers, are healed after 4-8 weeks of therapy....

...

Checklist

Age: Safety in those under 18 has not been established and the use of misoprostol in not recommended. No special precautions appear necessary in the elderly.

Pregnancy: Categor X. Misoprostol may provoke contractions of the womb resulting in miscarriage. This drug should be completely avoided throughout pregnancy, and while attempting to concieve. Infacts exposed to misprostol during early pregnancy may subsequently be liable to manifest autism type disorders.

Breast-feeding: No information as to the presence of misoprostol in breast milkL avoid the drug or bottle feed

Sport: permitted

Food: No interactions

Alcohol: May aggrevate ulcer pain

Tobacco: Smoking delays healing of ulcers even when misoprostol is given and increases the rate of relapse.

Other medications: No interactions reported.

Habit forming potential: None.

Overdose: Not rported, symptoms which may indicate overdose include diarrhoea, contractions of the womb with menstrual-like cramps, abdominal pain, seation, low blood pressure and slow pulse.

Sun sensitivity: No

Stopping the medicine: No special precautions necessary

Side effects:

Mild: (may disappear with continued treatment; see your doctor if persistent) Slight diarrhoea or loose bowel motions (15-20%), abdominal pains, nausea, excessive wind, vomiting, constipation

Headache

Menstrual cramps or pain, menstrual spotting, unusually heavy periods.

Mild allergic rash, itching or hives: see your doctor promptly

More serious: (seek emergency care)

Allergy or hypersensitivity, with marked rash or tiching, swelling of the face, lips or tongue, wheezy breathing or tightness in the throat, collapse.

14

Hi Liz -

My one (huge) concern is that they (the medical community) keep linking Mistoprostol as a drug that helps with TN for those patients that get TN because they get TN from having MS. My big question for the dr when I see him is....will it work for someone who doesn't have TN when many of the other drugs seem to have failed.

The links you provided are the ones that I also discovered myself...but again, they also link the drug, MS patients and TN. At this point...I don't care, you know....I'll try the drug cause everything else I've tried has failed...what's one more?!?! Besides...I have an ulcer...so, it's not like Mistoprostol could hurt, right?!?

Acupuncture

I did my research and found someone with great credentials. I spoke to her about putting needles in my face. I told her about my concern...and she said that she didn't have to put them in my face until I was ready. I thought...then what am I doing at the appt if it wasn't for pain relief in my face. I was under the wrong impression about how deep the needles go...she puts them very superficially, but yes, if your face is sensitive to touch, you might want to hold off for now.

She does, however, put them in my hands, feet, and legs to help me with other medical issues (I filled out a medical form prior to seeing her...stating such things as insomnia, headaches, etc...even if symptoms are brought on by medications). They can put needles in your neck to help with the muscles spasms...which I've had her do for me as that's where I "hold my stress". During my sessions....it is the only place where I can relax enough and get beyond pain for an hour....even tho I feel like a pin cushion. But, like I said before, it's not like I am pain free....but the pain is reduced to a point where it's not the only thing I think of.

Neurologist

I think she gave up on me because I was not like her other patients (as she told me a few times) and she was getting frustrated at not being able to successfully treat me. That's ok with me because I would rather find out now than later. Atleast she was honest with me which allowed me to move on to a dr that specializes in TN throughout his career...and hopefully, he won't give up on me.

The one thing my neuro did tell me is that...if you find that you had an allergic reaction to a medication...depending on what your allergic reaction was, you might be able to lower the dosage for a while to where you don't have the reaction...then increase the dosage again (slowly) and you may not have the allergic reaction.

I was on Trileptal...was increasing the dosage every week (I believe it was weekly..it was a while ago)...and once we hit a certain dosage, I broke out in horrible hives. After dealing with this for a week...I called my neuro and said I couldn't do this dosage any more and backed the meds down until the hives stopped. After a few months, we increased the dosage again. I did get a few bumps..nothing like before....and I was able to tolerate the increase in meds successfully.

I don't think my TN is as strong and painful as others that I have met on here....mine affects me on the left side of my jaw, upper and lower teeth. I cannot eat on the left side of mouth cause that's my trigger, along with temperature sensitivity...... and I do not have any molars on the lower right side of my mouth (previous dental issues having nothing to do with the TN)....so I am stuck eating soft, mushy food. I get ice pick stabbing pain in my left ear that makes me want to scream and pain behind my ear, as well. I have lost my support at home (my husband doesn't understand this disease) and my son moved out of the house 2 months ago. I am desperate to find a medication or a miracle.....I feel your pain.....I feel your tears....because I have Atypical TN, I was told surgery was not an option, so I have to find the miracle.....maybe I can find one for you, too.

Don't give up and don't give in to this disease....one of us will find something that works.....

Barbara

15

16

Liz - TN can be treated by acupuncture without needles in the face. For example - acupuncture treatment for your liver doesn't involve needles in your liver :)

I've been treated with needles in my face at times and needles down my back and legs at others. Both treatments were helfpul.

If you decide to try it out, and I highly recommend you do, be sure to give it a few treatments to take effect. It won't happen over night.

Best of luck.

17

Hi Barbara,

Not sure what I'm doing wrong here but I keep losing my posts ;) Yes, I was reading some of the links last night and saw that they keep linking it to MS TN. I'm with you though, I'd do almost anything to get rid of this and it doesn't sound like it would be a bad thing to try, so good luck.

I did have acupuncture many years ago for my migraines - it actually gave me my worst migraine after the first treatment - but he did warn me of that, I kept going and it really did hold them at bay for a long time. I read somewhere that acupressure can help too - obviously not on the trigger points but on the areas near them, actually it more like massage therapy - the kind you get at a physio. I tried a little bit on myself last night. I think I'm too sore at the moment to be a good judge but I think I can see that it could be beneficial.

Thanks for the tip about the allergic reaction, I might mention that to my doc. I did ask him if I could try it again (we really are desperate aren't we) but he ruled it out for something new first. Though he told me this is the last thing he can do for me - which I know isn't true, and fortunately, I don't really think he's given up on me, I'm just driving him to distraction.

I so hear you with the food thing, I'm sick to death of eating mush but I dare not eat anything else. I'm still pretty sure my last two attacks are more the neuropathic pain than true TN because the pain is constant and often throbbing and no tics this time (actually I do get them occasionally but on the other side - which is the side I had the real TN on). but this is the first time it has affected my eye too, I've had the skewer through the eyebrow before but not the eye, apart from that it's pretty much identical to TN. I guess it's no wonder the drongo doctor at the hospital said "whatever that is" when I suggested TNP.

I'll be keeping my fingers crossed for a miracle for you - and me, and all of us. I'm sure it is out there and in the meantime anything and everything that can reduce it by even 1% is worth chasing.

Sorry Barbara, I've had this up since yesterday but it's been a bad 30 hours or so (with no sleep) so I'll cut it off here and wish you all the best.

Liz

PS Sorry for any bad grammar or typos - in too much pain to check, and this might post twice as I've had it open so long it didn't seem to post the first time so I'll do it again (fortunately even through pain my brain seems to have remembered to copy things before I hit submit ;)

18

Hi Todd,

Good info to know thank you. I have used acupuncture once before - it was successful but that was many years ago. I will have a look around when I think I might stand some chance of being able to withstand it - apart from not being able to touch my face, I can't lie flat as it triggers an attack. Not that I could lay on one of those medical tables for too long anyway as, among my many other problems, I have rheumatoid arthritis, and the pain of laying or sitting on anything too hard for more than a few minutes would negate any benefit I received.

Still, I vaguely recall there being a recliner in the office so there may be around both of those problems :)

At the moment all I want is the world to open us and swallow me until the pain goes away or I have the strength to deal with it. Take care

Liz

19

Have you tried Lamictal? I went through months and months of med adjustment until we found the magic combination for me. It's Carbatrol, Lamictal, and lyrica. I have been pain free for a year now. My carbatrol has gone from 900mg a day to 200mg a day. We are slowly trying to get me off of it. If the pain comes back, then we will increase the dosage again.

I am so sorry you are going through so much hell. My neurologist told me that narcotics don't touch nerve pain and he will not prescribe them. I think the hospital gives morphine in hopes it will knock you out, so you don't care about anything. Maybe you need to find a new neurologist. I can't believe he won't do an MRI on you.

20

Hi Nanette -

Could you be so kind as to share what Carbatrol and Lamictal are?? I am having a very hard time finding meds that work and I'm unfamiliar with these two meds. I am currently on Lyrica (50 mg 2x daily working up to 300 mg daily) and Trileptal.

Thank you for any information you can share.....

Barbara