Just in need of some support as going through an "attack" - severe pain deep in right side of throat, that while has been "dormant" (i.e. painful but not constant and have been able to go about daily business) for the last 8 weeks while on Neurontin (gabapenthin), the last 2 weeks I have felt the discomfort increasing and then in last 2 days feel like I'm back to square one - can't swallow, breathing in cold air is excruciating, the drugs not making me as "stupid" as they usually do (which only means they're not working anymore?) and yesterday in work I was dizzy as hell and that's never happened me before. My throat is DRY, oh so dry, no amount of fluid will wet it out and that's making swallowing all the more harder. That's a new symptom, was never like that before.
Am stressed as in a new job and don't get sick pay so any time off and I'm unpaid. Snapping like hell to husband and have barely seen my young son I've spent so much time in bed. Am so angry it has come back like this as was admitted to hospital in September and was put on the drugs then and up to now I thought they were working at least 70% - now it feels like 5%.
WHAT pain relief has worked for you? It seems like nothing is. Have to wait until Monday to get appointment with my doctor, the UK system for getting an appointment with your GP definitely doesn't favour us "long sufferers" that's for sure.
So sorry you are experiencing such pain. I hope you are somewhat better today. I understand the dry mouth problem. Myine is caused by the pain medicine. I am taking 100mg nucynta, 4 to 5 times a day. It knock my pain out. I wish I didn't have to take it as often but that is the only way that I get relief. You may also find relief in a pain patch. Ask your doctor about Butrans. I tried the 10mg first. I went without pain for one straight month while on the patch. Unfortunately, I moved up to the 20mg and it did not help. Please know that you are in my prayers and I know I can speak for everyone when i say you are in ur thoughts.
Hi you...are you better today? Did you get in to see the Dr.? The only thing that works for me is going to the ER and getting shots of Dilaudid until I'm knocked out and not in pain anymore. Problem with that is if I still have it the next day I'm back to square one.
I don't know what the answer is and I don't know how to console you. All I do know is that I KNOW how you feel and I'm so sorry. Please know that I will be praying for you for relief. Sandee xoxo
I was just diagnosed by my oral surgeon. I am too going through a severe attack period. All I can do is squeeze my pillow and scream into it. I would rather have another baby without pain meds than go through this. Mine are triggered by talking or turning my head to the left. I just started Neurontin last week and have Loratab. Neither are helping at all. I wish I could make yours all better, but just know that there are others that understand what you're going through and are praying for you. I'm praying that my oral surgeon will be able to do surgery soon. I'm a teacher and am struggling so much.....
Hi everyone i have just join this site and would like to share to u some of my experience. Since 15yrs i was told i got GPN. I was 30 yrs old that time. In my case i was getting pain in my RHS deep tongue,throat and sometimes protruding to the deep inside ear which is more painful. I have been put on different medications like Tegretol but no good results. Finally, the best result i got after 5 yrs, is with accupunture after 3 sessions all pain fade out to 5% and afte two weeks no pain at all. I was living normal life. Going out/drinking anything cold hot - NO PAIN AT ALL. But after a year the MONSTER come back and pain start again. I went back for accupuncture and it works but with 5 sessions now. I suffer for only 2-3 months after which it disapear completely - NO MEDICATION. Every year the pain comes back and i used the same treatment and worked very well for 5 yrs. During which time i was well for 9 month per yr.
Hence after , i change from accupuncture to accupresure which is much more better relief and till today i am using this method for treating my GPN. I am well for only 3/4 a yr and 1/4 with pain and treatment.
I have heard that many people going for surgical and No one yet have told me if really it was a success. One yr brain is cut its too late.
I am happy to live with 3/4 of my life happilly instead of going for surgical. I will recomend all people to try accupressure before any decision.
I read your post with interest as acupuncture is the only thing that helped mine. None of the pain meds or anti-epileptic meds worked. In fact Neurontin actually made it worse. Do people know that Neurontin has actually not been trialled for people with neuropathic pain and the manufacturer was sued millions because of this false advertising? There have been numbers of reports of this drug actually enhancing nauropathic pain. All this came about well after I had been on it, so it didn't surprise me.
But back to acupuncture. It took me 2 sessions 2 days apart to knock mine on the head. I was actually to the point where had this not worked I would have probably committed suicide as I could no longer live in the constant severe pain. My pain at its worse is so severe that my tongue feels like it has electrical cords attached to it in specific spots and goes into spasms with the pain. When it stops my tongue actually feels like it is bleeding and smoking. An awful sensation!!!
Anyway, just wanted to mention that even when you are not having attacks one needs to still have regular acupuncture for the points that work for you along with having regular acupressure massages which I have as well. If during times you notice niggling (these are little attacks for me where the pain comes intermittently), I go and have extra acupuncture sessions for a few weeks twice a week. I learnt my lesson here as a number o years ago I felt so good that I stopped having the acupuncture for many months, then wham I got struck with another severe bout and it was even worse than before. This time, like you Sibarna, it took several more treatments to get it under control. I have since learnt to not stop the maintenance visits no matter how pain free I am with it.
For me acupuncture saved my life and due to this I am now studying a double degree. One is health science and the other a Masters of traditonal chinese medicine. I want to learn to do the needling to myself so I can do it daily, along with I want to really explore this pain relief side so I can help others. I have also found it has worked wonders with my multiple sclerosis in managing certain symptoms. It brings feeling back when I am numb. It can stop nasty pins and needles etc. It is very powerful. I am now medication free for MS and doing the best I have compared to the years on meds and past hsitory with MS (12 years diagnosed but many years prior being invesitgated for numerous things but no-one thought to look at MS till I lost the ability to walk).
I urge all people who suffer from any neuropathic pain to try acupuncture, especially if they are not getting relief, or full relief from medication. I would also urge this before attempting risky surgery. One has to remember though that you may need several sessions of acupuncture very close together in order to start feeling benefit, especially the longer you have lived with the condition. Just like drugs it can need time.
I am currently taking tegratol twice a day the condition is still there I can feel it. I can eat and function with the meds. I have sever dry mouth at night when sleeping someone else mentioned this. Is this common with GPN?
@Chris, you'll find the dry mouth is quite a common side effect of Tegretol. A severe dry mouth can actually trigger the GPN. I unfortunately have two autoimmune diseases and the GPN is a rare symptom of one of them. I have MS and Sjogren's. The Sjogren's causing severe dryness of all my mucous producing glands, including my joints. I have learnt over the last few years that dry weather would by a trigger for the GPN, then started noticing other triggers with the dryness. I checked this out with my neuro and ENT and was told yes that is very probable.
So how I combat these is that I use products from the Biotene line. I have a throat spray and a mouth gel for night time. To give you an idea how dry mine becomes my tongue will actually get stuck and I can't do the swallow action and it scares the daylights out of me. The drier your tongue is the more swollen it will be as well. Mine is so dry at times my throat will actually bleed during the night and early morning and all I can taste is blood, and I spit a lot of it out. I got all the tests done to eliminate whether my gums were playing up etc and they weren't, then the ENT checked my throat and said it is getting so aggravated by the dryness during the night it is bleeding slightly :-( I have it more under control now but it is a constant battle because one can't change weather conditions, and have found dry weather can be a real trigger. My dryness is much easier to manage the more humidity there is.
Anyway, try using the throat spray and gel of a night time. The gel is very thick and sticks to your tongue but moisturises it and your mouth. There's also another brand called Oral Seven, but personally I have found the Oral Seven taste can really sting my tongue and throat. Not sure if this is because mine becomes red raw or whether it's linked to the GPN. Not going to use it again to find out as used it 3 times with same awful results ;-) What I also use given mine is so severe all day every day but worse at nights, is a nasal moisturiser and saline nasal spray. I actually find the saline good of a night as you feel it go down the back of the throat wetting it. I also use the Biotene mouthwash which is an excellent lubricant afte washing teeth. Your tongue feels normal for a while. So I use that before bed as well.
I also have a steam vaporiser next to the bed to put moisture back in the air and I find this helps too. Now none of these are a cure, but they do help alleviate symptoms. I know mine is classed as severe, I'm so dry I have to have punctual eye plugs put into my ducts every 6 weeks. So I am probably a lot drier than what you guys are experiencing, which would suggest that you would probably get a lot better relief than what I get and it makes a difference for me.
If you try these products and/or the other things I have suggested, would you mind placing a post on here about it as it is good to share what thing work for us. That way anyone else suffering the same side effect as you from Tegretol, or other drugs can give it a go too ;-)
I would love to know do other people find dryness a trigger with GPN? I also used to find if I was doing exercise that caused me to pant that this would also trigger it as my throat would get even drier. I found that hot dry heat was worse than cold dry weather, but cold dry weather could still causes me terrible issues with dryness which can trigger the GPN, but I have found all my major attacks, that were relentless and lasted for many months, were ALWAYS in our summer months here with it beginning as the weather got warmer the month before summer. Inbetween these periods I would just get pangs of it on and off. May have it a few times a day randomly but the pain was never as severe as bringing me basically to my knees and crippling me in bed as my severe attacks.
Thanx for all the info. Th dry mouth actually started long before my 2nd round with GPN. I was thinking that is what brought the GPN on but my ENT disagrees. and it is only at night which is when the GPN bothers me the least. It is very confusing. I will look into the products you mentioned.
Do you suffer from very dry eyes and/or dry mouth? If you do and your throat dryness is actually at night before you sleep, then I would suggest you go and see an eye specialists and ask for the following:
Schirmer Test Measures tear production.
Rose Bengal and Lissamine Green Eyedrops containing dyes that an eye care specialist uses to examine the surface of the eye for dry spots.
This is to determine if you have a condition called Sjogren's. Most people only suffer from it mildly affecting the throat, dry mouth and eyes. Unfortunately I have it chronically, affects my joints and salivary glands terribly and causes even more fatigue with me on top of the MS :-(
If your dry mouth is more so that you are waking during the night and it is very dry, another cause could sleep apnea. A sleep study test will determine if that is a factor. Other things can be medication, especially diuretics. So look at whether you have started any new medication a few weeks, or even a couple of months prior to the dry mouth beginning. Tegretol can cause a dry mouth too.
Anyway, those products will help manage it. Will be interested to hear from you to see how you go, and whether you go and have the eye tests.