I was diagnosed in the E.R. they gave me some Lortabs and Neurontin.
The lortabs work well enough to make the pain bearable. But I have been reluctant to take the neurontin. My bottle says to take one by mouth 3 times a day...
I guess I'm holding out until I get a definitive answer about weather or not I can instead, just take the Neurontin as needed for pain
Hi Tam
although I cannot say if they will suit you I can say that they are the best choice for me. I feel so well and happy when I take them. I am always slightly under the weather with Tegretol and that's why I am returning to Neurontin. We are all different. I would ask your pharmacist about the two meds. they are better trained than we about medication and often surprisingly helpful. Jackie
Did the ER explain to you that Neurotin should be taken regularly, on schedule, in order to stop the pain? The point is to prevent this pain from happening. I am on this drug and it is a life saver for me. I am newly diagnosed and I would not be functioning without this medication.
Also, this drug has to build up in your bloodstream in order to be effective.
I would follow up with your regular doctor to discuss all of this with him/her.
I take neurotin 600m three times a day ,as Lisa says they must be taken regulary taking one here and there for pain will not work ,they are not pain killers ,they will (hopefully) prevent your pain
They do help me a lot ,I get breakthrough pain but wouldn't like to be without them
hope you feel better soon x
Hi there!
Everyone's story is indeed different, but it is very helpful to have the chance here to listen to individual personal stories. Neurontin, and I agree, your pharmacist is the best person to speak with regarding this drug and others, for me, is the most successful. I find it to be infinitely more tolerable and less corrosive than some of the others, and it is, when taken, regularly, can be very effective in managing TN. I take Gabapentin (the generic form of Neurontin) 400 mg 6 x day. It is not, however, a pain medication. Unfortunately, the class of drugs used to treat TN are anti-convulsion medications, the same ones used to treat seizures and epileptics. I am not a fan of drugs - especially not these kinds, but it has helped. Recently, I have been very interested in seeking alternative and homeopathic remedies to be used in tandem with Gabapentin. A few days ago I discovered, and tried, an over-the-counter product called 'Capzasin', which is a product containing Capsicin, which was recommended as a homeopathic remedy. This product looks like a deodorant roll-on and you roll it on your face. I have definitely noticed some relief from using it. But if you try it, please make sure to keep it as far away from your eyes as possible. After using it for a day, I washed my face, (tried to, anyway, without having too much pain), and the residue got into my eyes and really burned them. It is a good product to put on at night before sleeping.
If anyone has other homeopathic ideas /suggestions - please pass them on.
Be well, Robert
Hi Tam. I see you must be new to this. I can't tell you much about Nurontin. It is one of the drugs that can be prescribed for TN. Ususally though, Tegretol is prescribed. I'm on it and Lyrica as well. But, I have had a Gamma Knife and a Cyber Knife treatment. Don't know "for sure" but I think the Lyrica "may" be for neuropathy caused by the Cyber Knife. Anyway, the issue here is YOUR TN, not mine. You probably will want to see a good neurologist, or maybe a good neurosurgeon. From my 14 years experience I think I would see a neurosurgeon (if you can see one first w/o going through a neurologist). Thats just a guess. And that suggestion is just to minimize the number of dr appointments and get right on to the issue of what to do. Whatever. Most of us though see a neurologist first. Sometimes it can be controlled with medications. Some think its better to go as long as you can on just meds, and see how long or how far you can go w/o any kind of surgery. Others think its better to get right to it and get the surgery , if needed, as soon as possible. One thing for certain is this! You must, as in MUST, see neurologists and neurosurgeons who are very familiar with TN. The neuro and the neurosurgeon you pick is very very important.
Its funny you mentioned that Robert. I was just watching a documentary about American Indians last night. One of the passing comments was St. John's Wort. They claimed it aided the central nervous system. For God's sake don't take this as a recommendation, but just a passing comment. I really don't think TN is an issue of the central nervous system, but I thought it might be worth my looking into online a little bit. I just haven't done it yet. My feeling is it is just a calming thing -- something one might take to aide anxiety or some such condition. I really don't know. I know a guy who took it years ago, but I think (dont know for sure) he took it to keep up his spirits and not get depressed. Think I'll check into it online.
ArtsGuy said:
Hi there!
Everyone's story is indeed different, but it is very helpful to have the chance here to listen to individual personal stories. Neurontin, and I agree, your pharmacist is the best person to speak with regarding this drug and others, for me, is the most successful. I find it to be infinitely more tolerable and less corrosive than some of the others, and it is, when taken, regularly, can be very effective in managing TN. I take Gabapentin (the generic form of Neurontin) 400 mg 6 x day. It is not, however, a pain medication. Unfortunately, the class of drugs used to treat TN are anti-convulsion medications, the same ones used to treat seizures and epileptics. I am not a fan of drugs - especially not these kinds, but it has helped. Recently, I have been very interested in seeking alternative and homeopathic remedies to be used in tandem with Gabapentin. A few days ago I discovered, and tried, an over-the-counter product called 'Capzasin', which is a product containing Capsicin, which was recommended as a homeopathic remedy. This product looks like a deodorant roll-on and you roll it on your face. I have definitely noticed some relief from using it. But if you try it, please make sure to keep it as far away from your eyes as possible. After using it for a day, I washed my face, (tried to, anyway, without having too much pain), and the residue got into my eyes and really burned them. It is a good product to put on at night before sleeping.
If anyone has other homeopathic ideas /suggestions - please pass them on.
Be well, Robert
Hi Tam,
The best advice is checking with your pharmacist. Neurontin works wonders for many people, and for pain it was the best for me. But I was very sensitive to it and its side effects so had to stop taking it. It is something you will have to try and see, unfortunately. I would follow up with your regular doctor and try to get a referral to a Neuralogist. That would be the best person to offer medication advice. Good luck and I am sorry you have to deal with this.
Debbie
Thank You everyone, for all the great info!! My other concern with the neurontin is... am I going to be able to still function during the day?? I've heard that it really makes you feel 'out of it'...
It really depends on the person to be honest. I was switched to neurontin after Tegretol made me a virtual zombie. I could not walk, drive, heck I was just a walking body on Tegretol. So when I went on neurontin I was shocked that I had none of the same side effects. Each person is different though. But my Dr. did tell me that neurontin is a really well tolerated drug. If you are sleepy at first, as long as you increase the meds slowly, the drowzy effect of the drug will go away.
Jimmy, yes I am very new to this, Pain started in early November and I was diagnosed Nov 22 2011. I am starting to see the need for a regular regiment of something (like the neurontin). My attacks have been about 2 - 3 weeks apart... but I have noticed after each one that the dull, lingering numb like pain is ever constant between each attack.
I do not have a doctor yet... we live out in the boonies and don't have transportation yet. We rely on our friends and neighbors but that is very hard to do with doctors appointments. But worry not we are hopeful that we will have a vehicle with this years tax returns :) I am researching doctors now and plan on that being one of the first trips I make!
I only have a one month supply of the neurontin and do not want to start taking it until I know that I'll be able to have a doctor that can prescribe refills or to change the meds if necessary. And I only have enough pain meds to get me through one more attack... I wonder will an E.R. doc order refills if asked..?? They only gave me 12 and I went through 7 of them between Friday and today.
If attacks are 2 - 3 weeks apart count yourself lucky. Most are every day. By all means make contact with a neurologist now and get evaluated for a prescription.
Thanks, Jimmy!
I am all for the 'calming thing', by all means!! St. John's Wort can be useful for a variety of issues - including relaxing and calming down. One of the worst aspects of having TN, for me, is the anxiety of not knowing when the next horrible attack is coming on - which, in my case, can be worse than the actual pain associated with the attack. I take .5 mg of Xanax every day to keep me calm. I work in the entertainment arts world - and there is enough stress there without having to add to it. It works for me. Everyone has to find his own recipe for what works, and for Tam, yes she is lucky to have attacks every 2-3 weeks. I remember those days! Unfortunately such is not the case now. There are as many neurological opinions out there as there are drugs, and it's all about trial and error to find the right one and the right dosage balance. My first neurologist wrote the textbook on headaches that all neurologists study in medical school. Of course he knew everything about everything - except he over-prescribed Tegretol for me - to the point where I didn't know who I was anymore. He seemed to know everything except how to listen! It takes time to sort it all out for sure.....
Jimmy Works said:
Its funny you mentioned that Robert. I was just watching a documentary about American Indians last night. One of the passing comments was St. John's Wort. They claimed it aided the central nervous system. For God's sake don't take this as a recommendation, but just a passing comment. I really don't think TN is an issue of the central nervous system, but I thought it might be worth my looking into online a little bit. I just haven't done it yet. My feeling is it is just a calming thing -- something one might take to aide anxiety or some such condition. I really don't know. I know a guy who took it years ago, but I think (dont know for sure) he took it to keep up his spirits and not get depressed. Think I'll check into it online.
ArtsGuy said:Hi there!
Everyone's story is indeed different, but it is very helpful to have the chance here to listen to individual personal stories. Neurontin, and I agree, your pharmacist is the best person to speak with regarding this drug and others, for me, is the most successful. I find it to be infinitely more tolerable and less corrosive than some of the others, and it is, when taken, regularly, can be very effective in managing TN. I take Gabapentin (the generic form of Neurontin) 400 mg 6 x day. It is not, however, a pain medication. Unfortunately, the class of drugs used to treat TN are anti-convulsion medications, the same ones used to treat seizures and epileptics. I am not a fan of drugs - especially not these kinds, but it has helped. Recently, I have been very interested in seeking alternative and homeopathic remedies to be used in tandem with Gabapentin. A few days ago I discovered, and tried, an over-the-counter product called 'Capzasin', which is a product containing Capsicin, which was recommended as a homeopathic remedy. This product looks like a deodorant roll-on and you roll it on your face. I have definitely noticed some relief from using it. But if you try it, please make sure to keep it as far away from your eyes as possible. After using it for a day, I washed my face, (tried to, anyway, without having too much pain), and the residue got into my eyes and really burned them. It is a good product to put on at night before sleeping.
If anyone has other homeopathic ideas /suggestions - please pass them on.
Be well, Robert
Lisa, no they did not explain that to me but I never take anything prescribed to me with out looking it up first... I have not taken any of the 90 neurontin YET. I have only used the lortabs they only gave me 12 and i have 2 left. I've been taking ibuprofen for the daily pain and only use the lortabs for an attack
Lisa (iamrite) said:
Did the ER explain to you that Neurotin should be taken regularly, on schedule, in order to stop the pain? The point is to prevent this pain from happening. I am on this drug and it is a life saver for me. I am newly diagnosed and I would not be functioning without this medication.
Also, this drug has to build up in your bloodstream in order to be effective.
I would follow up with your regular doctor to discuss all of this with him/her.
The Pharmacological properties of the Neurontin is available in the leaflet provided by Pfizer. It is my understanding that the peak plasma concentration of Gabapentin is within 2 to 3 hours, and the elimination half life is independent of dose and average 5 to 7 hours. Therefore, for most of us, if it is taken 3 to 4 times per day (6 to 8 hourly) will be sufficient. As for dosage , it can be as high as 3600mg per day (for patients with good renal function).
I was diagnosed this week, and was given Neurontin 300 mg. to lead up to three times a day. I haven't reached taking 900 mg. a day yet, but I still have grueling pain if I talk, eat or drink on the left side, brush my teeth or wash the left side of my face. Sometimes the pain lasts for 10 to 15 minutes. I am wondering how long it will take to have relief? I also have Norco that I can take for pain that takes the edge off slightly.
Lisa (iamrite) said:
Did the ER explain to you that Neurotin should be taken regularly, on schedule, in order to stop the pain? The point is to prevent this pain from happening. I am on this drug and it is a life saver for me. I am newly diagnosed and I would not be functioning without this medication.
Also, this drug has to build up in your bloodstream in order to be effective.
I would follow up with your regular doctor to discuss all of this with him/her.
Hi…l. TN is progressive
Please seek THREE things
Nurologist with LOTS of TN patients as is rare disease
AND
grab book…Striking Back…by dr. Ken Casey ASAP
ASK PRIMARY for lidocaine patches or cream
Can many times take less meds with a topical add on!
Read and learn alllll you can!