I’m on my second ant-seizure med, neurontin, which has worked partially, but my dosage hasnt been quite right. I missed a pill on Monday, due to bad weather causing me to not be able to pick up a refill. Since then, my attacks have been getting worse daily. On Thursday, I woke up not being able to open my mouth without severe pain! It has lasted 24/7 since then (now Sat), but has gotten worse each day. My dr raised my dosage to 1200 mg on Thursday. I started the new dosage that day. I can’t talk, eat, or even drink! I feel like my dr is checking off a list versus helping me get out of this constant attack. He wants me to give the new dosage 5-7 days to take effect, then he will give me a new drug if it doesn’t work. When I can’t talk to my kids, work, eat, etc…that’s a really long time! I’ve started forcing down my pills with Ensure, but it’s tough! I just want to make sure I stay nourished. Has anyone gone through this before? Any advice? If I can’t at least talk, I will have to take a leave of absence at work, so I plan to tell him Monday to prescribe the new drug. Vicodin and Percocet don’t help my ability to talk.
I certainly feel for u and yes, I've gone through this many times. The good thing here is that we know this isn't life threatening in any way and we also know these "bouts" of not being able to speak or eat will pass. That doesn't help much to hear because I know what you're going through. I normally keep a notebook handy to write in & thank goodness for text/email these days. I struggled terribly before texting was available. We here on the site will remind you that we're not doctors but still try to advise you. For me, the extended released tegretol along with Lyrica has made all the difference. Pain meds would never touch it. It is a "trial & error" process with our doctors. The best advise I can give you is to make sure the meds are taken exactly on time so there is a steady flow in the blood steam & if possible, try to get as much rest as possible along with trying very hard not to let any kind of stress in your life aggravate it. It's recommended that the seizure med be taken 6 hrs apart but here again just myself speaking, I have learned to take them every 5 hours. All my drs have agreed that one knows their own bodies sometimes better than they & can judge what works best as far as how to reasonably space the meds. My heart is breaking for u right now & will keep u in my prayers!
i feel you
Not sure if you know but 1200mg of Neurontin is still a low end dose. I am not encouraging you to take more but as there has to be a gradual titrate upwards it could be that you need more and it will take a while to hit that magic amount. Not sure what the Face Pain Info says about dosage. If you switch it is possible you will have to build up again on another medication. I have been where you are and as it was the weekend I asked my husband to come with me to the pharmacist and ask on my behalf for a little dosage clarity and recommendations. You can also download an app for tablets and smart phones that will talk to your DR/ pharmacist for you as you type. A good tip for newcomers is to fill in the attending form from the Face Pain Info tab to take with you to see any medical professional as it will save answering a lot of vital questions.
Dear Mcschub,
Your post touched me so deeply since I've been in your shoes so many times. I've thought about you over the weekend & have been praying that the pain has subsided. What did you find out on Monday?
Thank you, Sandra! You are all so very sweet! I enlisted the help of my family to call the doctor Monday and he changed me from Neurontim to Lyrica. So I started last night taking 75 mg 1x per day, and will increase Thursday to 2x a day. I still can’t talk, but did have a block of time (from about 1-3 pm) yesterday and today, where I could manage through the pain and still talk. However, after doing that, both days I’ve felt horrible after I lose the ability to talk. Right now, I’m struggling to swallow. So, I’m still drinking only ensure for nourishment. Tomorrow will be day 7 :(. I’m very hopeful though that the Lyrica will start working very, very soon! I did go to work today, but may stay home for a while tomorrow morning again. People just don’t understand why you can’t talk and tend to ask even more questions once they know that you can’t really talk 
Hug!
This sounds dreadful 
I have had a few of these episodes, however the attacks usually last only a few hours. I am sending you lots of hugs. The feeling of being put through a checklist with doctors is a frustrating situation. I am glad to hear (read) you have taken steps to remedy the doctor issue. I hope the new med regiment works for you!
Knottytree
so sorry to hear you are in such pain
Mcshub, there are other medications that can be used together with your neurontin that should help you, such as muscle relaxants and pain meds. Even with all 3, you have to work with the Dr. to get the dosages of each one right. You can even change anti-seizure meds if neurontin isn't working. A lot of people are reporting help with Trileptal. But your Dr. needs to know this. If you go again for 3 days unable to drink, head to the E.R. because you will be dangerously dehydrated. They can also offer you some pain relief. Dehydration makes pain worse. There are discussions about things people do at home to lessen the pain a bit, if you want to browse. Go to the tab called "Forum/discussions" and enter words in the search box there such as home remedies or natural remedies or other things you might think of. One I started has the words 'little helps" in it, so you can search for that. Lots of people commented with good ideas on that one. There are so many combinations of meds that you can try, that as soon as you are unhappy with the previous med or dosage, you should talk to the Dr. again. Don't give up yet.
Blessings, Sheila
I don't have any advice but I see it's been days since you posted this and just wondering how you're doing. I'm glad you're drinking Ensure and sure hope your pain has gone away.
Hello,
Is getting the the Emergency Room out of the question? They can provide meds to break the cycle of pain that we sometimes get stuck in.
I'm so sorry to hear that this is happening to you, or to anyone. No one should have to endure this.
Stef
I really feel sorry for you and I have gone through this. I went to a dentist and was given a long buccal injection . This will numb my nerve and I got relief for a couple of hours. I could eat and drink ( with the help of a straw) without PAIN then. Although it was a temporary relief, I needed it or else I would have gone mad! Neurontin does not help me, it made me worst. I took Lyrica and Clonazepam that time . The combination of these two drugs enable me to sleep well at night and feel better the next morning . Now , I am on Lyrica and LamoTRIGne . Everyone reacts differently to the same kinds of drugs, so there is a lot of stressful trials ( with pain) until we got something to help us. It is the most terrible pain we have had. Take care.
I can empathize as I have had much pain the past few weeks with talking and eating. I finally started Trileptal last week and it is helping though I am far from pain free. I had an oral surgeon appt last week and he injected steriods into the nerve in hopes of helping the TN. It didn't, but the numbing agent he used gave me one wonderful pain free day. He said he would numb my mouth for me anytime my pain got too unbearable. Bless him! He is one of the only in a line of 8 doctors that truly seems to empathize and want to treat my pain. I see a neurosurgeon next month. I hope he he will have some new options besides the ever increasing anti-convulsant dosages. Hang in there...you are not along. I hope your pain has improved.
Oh bldr! I am jealous. I have begged so many dentists to just numb my face for the day and they all refused! E.R. docs refused too. EIGHT DOCTORS THAT ARE HELPFUL!?!?! You have a goldmine!!! Most of us have trouble finding even ONE! You can mention options to doctors too, such as combining anti-convulsants with muscle relaxants and pain meds and some anti-anxiety meds tend to make your damaged nerves less irritable and painful.
This is true in most parts of the country now who have an educated staff. In some parts of the country including my local ER's. this was never & still is not the case. I was treated with morphine. I left with the same excruciating pain as before & it tortured me by vomiting at home. I'm so hoping for u, Mcschub, that this is not the case in ER's where u live. Pain meds don't always work for many.
Hope u r doing well, Stef. Hugs.
Stef said:
Hello,
Is getting the the Emergency Room out of the question? They can provide meds to break the cycle of pain that we sometimes get stuck in.
I'm so sorry to hear that this is happening to you, or to anyone. No one should have to endure this.
Stef
Thank you all again.the Lyrica hasn’t kicked in yet, so I’m still waiting it out. I’m still waking up at least every hour at night and can’t talk, eat, or drink without pain. I am getting quite tired of ensure! :). I’m sure it would help my mess if I drank more, but it’s just too painful. I increase my dosage tomorrow. It was tempting to start early, but I didn’t. I cannot wait for that extra pill!! I have thought about the ER, but didn’t know if there was really anything they could do for me. hearing what everyone else has gone through helps me to know I’m not alone in my condition or my treatment plan. I know the anti-convulsants are really just trial and error, but I was worried that my doctor was mis-guiding me until I found this site. I do have a question…I have seen many posts about people that are combining Mede for success. My dr hasn’t mentioned that as an option. Is that something that usually comes later in treatment after everything has been tested by itself?
McShub,
My mother and I almost live on Ensure. Lately we found out that coconut water, that comes in cans like soda does, and has no bubbles, has more vitamins, minerals, electrolytes, etc. than anything except seaweed. We buy it by the case. Get hubby or a friend or relative to start calling grocery stores to see who carries it, then buy it by the case. A NICE refreshing change from Ensure. If there's an Asian market in town, call them too.
You need to be sipping water more than Ensure. That will hydrate you more, which helps pain.
The E.R. can give you a pain shot, and for me, after 4 or 5 nights of the pain/insomnia cycle, one shot stops that in its tracks and the pain is back on a bearable level again.
YOU are also allowed to mention to your Dr. the possibility of combining meds. You are a partner in health with him. He is not the God over your body. (Even if they think they are.) You study and suggest things to him that he may not have learned yet. You should be starting combinations of meds as soon as you find that only one medicine is not working. Did your Dr. tell you how long it takes for Lyrica to start working? You need other things to help until that kicks in, if it does.
Kind wishes and thoughts...
Sheila
Sheila W,
" YOU are also allowed to mention to your Dr. the possibility of combining meds. You are a partner in health with him. He is not the God over your body. (Even if they think they are.) You study and suggest things to him that he may not have learned yet."
I could not agree with this satement more. We have to be our own advocates! And while I have seen 8 doctor in a search for relief, less than half were really interested in pursuing this past shoving the newest pill at me and sending me on my way. The neurologist was the worst. While nice, had no interest in looking for a cause or treatment other than higher and higher doses of anti-seizure meds. I realize they are usually a necessity but lean towards wanting to find a cause for this and treat it even if it might mean surgery. I realize many would disagree with this but I can't imagine being on these drugs forever if there is a chance for a good outcome with some other kind of intervention.
Sheila,
I am not sure if I am right about coconut water that comes in cans. I live in tropical country and fresh coconut drink is cheap. It definitely tastes different from canned coconut drink which I think contains more sugar than usual. I do not know whether the canned coconut drink is the same kind sold here. There are many brands , but none tastes original. I am also not sure whether the vitamins, minerals etc stated in the cans are correct. I feel that Ensure is a better choice, there is protein in it.
Regards,
Seow
Seow,
Yes, FRESH from the coconut would be wonderful, but in Canada and US, that's just not possible, so if we want coconut water, we have to get the canned ones. From what I have studied, there is no sugar added to the coconut water I buy, they have small pieces of coconut in the can to keep the flavor fresher and more coconut flavor. These come from tropical places too. The brands I have seen are from Thailand, Bali, American Samoa and South America. I had to try about 3 brands to find a brand that tasted the most natural. I am happy with the one I found. We sure drink a lot of it because we have other health problems that make it hard to eat. So we used to get health problems from malnutrition. Coconut water is amazing. You are so lucky to be able to taste it fresh and cheap! I hope the labels are true when they say the only ingredient is coconut. Not even a chemical for preservative.
Seow Chin Wong said:
Sheila,
I am not sure if I am right about coconut water that comes in cans. I live in tropical country and fresh coconut drink is cheap. It definitely tastes different from canned coconut drink which I think contains more sugar than usual. I do not know whether the canned coconut drink is the same kind sold here. There are many brands , but none tastes original. I am also not sure whether the vitamins, minerals etc stated in the cans are correct. I feel that Ensure is a better choice, there is protein in it.
Regards,
Seow