Do I have Trigeminal Neuralgia
Posted , 11 users are following.
Without going through the last 6 weeks of hell, let me be brief to see if anyone can help me. I've had head and face pain so severe I'm not sure how much more I can take. My last contact with a doctor was an ENT that stopped me when I was trying to explain my symptoms, and said he believed I had Trigeminal Neuralgia. He sent me home with Gabapentin, and said he would get me in to see a Neurologist. My appointmen isn't until Dec 15th. I was told to take one 100 MG pill three times a day. I thought this was it! I went for 3 days with no pains. Then in the early morning hours I woke up with the pain back. Usually my pain is 10++++++. This morning it was about 8-9. I did not get the burning, searing pain in the top of my head this time. It was confined to my forehead, eye, teeth, and an ache near my ear. I took 2 Gabapentin, and a pain pill I was given at the ER at an earlier visit. The pain lasted for about 2 hours. I woke at 6 am with a dull ache near my ear. A feeling of pressure. Since I could not take anymore Gabapentin that soon, I stayed in bed till 7:30, and then I took 2 more Gabapentin, and 2 Excedrin migraine pills. Within one hour, I was pain free. Is it okay for me to up my dosage without the doctor saying it's okay? Does what I have sound like Trigeminal Neuralgia? My pain covers my front teeth on the left, inside my nose, under my eye, in my eye, over my eye, and into my forehead. Then I have these streaking pains that run back and forth very quickly from front to back on top of my head. It's either very, very hot, or very, very cold. To me, it's like a pinball machine that slings the ball back and forth, back and forth. And the pain is severe! I have pains in the roof of my mouth, that lead up to my eye. I'm embarrassed to say this because I've never seen this written anywhere else, but I get this strange smell in my nose when this happens, Now, I'll probably be taken as a crackpot, but that's just the way it is, My pains are so severe, everytime I have one of these attacks, I pray that it will be the last one, I beg...please Lord, don't let me go through this again! I'm not sure I can keep going through this. Can anybody relate to what I've said? Does this sound like Trigeminal Neuralgia? Am I putting myself in danger by increasing Gabperntin? I know most people take a lot more than this, but am I doing it too soon? I'd take the whole bottle before going through another attack! Thank you for any information you can give me.
0 likes, 99 replies
Marty007 sandy5221948
Posted
hi I am new to this forum and just wanted to offer what support I can as a former trigeminal neuralgia patient. I am just going to jot down things as they come to mind ,sorry if it is a ramble!
I recognise a lot of your description of the pain although I never experienced the funny smells.
i too was misdiagnosed with sinus infections .
I had teeth removed , nerves removed , etc. By my dentist who finally sent me to a training hospital for dentists who diagnosed me in 30 seconds , my dentist later told me he had thought of trigeminal neuralgia but dismissed it as I was too young.
I was then prescribed tegretol which did help a lot for a while , later my GP added amytriptyline . I was taking 1000 mg tegretol per day by the time of my cure in twice daily doses slow release , late on as my pain got worse I took it every 10 hours to the extent of setting my alarm for all hours of the night because in my experience leaving my tablets for 12 hours seemed to leave me open to an attack of pain around tablet time . I must point out to all that I did this without my GP knowledge , by that time I was focussed only on stopping the pain.
Help finally came when my GP heard about an operation bring done by a fairly local specialist and got me out onto the waiting list , I had the op eventually and have never looked back , can go into more detail if anyone needs more info .
on a practical level the small things that helped me ,
i kept a warm scarf wrapped around my face on even slightly windy or cold days.
stopped chewing gum.
if I felt a twinge didn't clean teeth as this made things worse.
If you get warning twinges listen to them , get somewhere comfortable where you can lean your head back and lie still , to not to move your face or talk. I found smoking was a no no too.
i always sat thinking about a treat I would allow myself after the attack was over, for me it was a cigarette , I would roll the packet around in my hand to help myself stay calm and I knew the attack was almost over once I could put a cigarette to my mouth without a pain attack, this may sound mad to someone who has not actually experienced this level of pain but anything you can do to stay calm and still I found helped to reduce length of attacks .
I also always drank warm , not hot ,coffee through a straw as this seemed to help .
I am aware that the pain may differ according to which of the trigeminal nerves are affected so just to say my pain was in my teeth , lips , cheek and up to my one eye so I think my middle nerve was affected
I know I have missed out a lot of my history , would be happy to clarify or discuss anything anyone wants to know but just to say there us treatment out there and there is light at the end of the tunnel , I really feel for you hun glad that there appears to be every chance you will be correctly diagnosed soon and the awareness of this awful condition is out there .
i suffered for 8 years due to misdiagnosis and lack of knowledge , had never heard of it !! Thinking of you and sending my love, stay strong and hold on x
Marty007 sandy5221948
Posted
sandy5221948 Marty007
Posted
What operation did you have? I'm a smoker too. I don't believe they hurt me, or cause me anymore pain. As soon as my pain calms down, I'm outside in the swing having one. I figure that's the only pleasure I'm getting in life right now. My pains last for hours too. Since I've been on Gabapentin most of my attacks are shorter in duration, and not as severe. But...I had one that lasted 4 hours yesterday, and it was pretty severe. I never cried...and that's a good thing. Still want to know about your surgery.
susan33651 sandy5221948
Posted
Hi to all,
I'm at work at the moment and have the tingling cheek, like a spikey footed spider crawling, so far I have just had a few shocks in my lips, I am hoping it doesn't become a full blown attack! The worst of the pain I get is in my left eye, that floors me. So far so good, no left eye pain.
I'm on Amitriptyline 50mg and can take an extra 20mg if needed. 1000mg of Carbamazepine split into 4 doses once every 6 hours. The Neurologist said this can be increased if needed.
I would pay to have fewer than 100shocks
susan33651
Posted
100 shocks /stabs a day, not there yet!
Stay strong everyone. Night.
sandy5221948 susan33651
Posted
My pains are searing, burning from my gum over my eyetooth, all the way up into my scalp. That horrible burning pain behind my eye is the worst for me! I even feel it in the roof of my mouth. I'm going to ask for meds 4 times a day when I go back on Thursday. Just too much time with nothing to keep it under control.
susan33651 sandy5221948
Posted
I actually told my GP that I was splitting the total dose for the day into 4 doses on the advice of a forum member, plus it makes more sense, he knows I'm a nurse so I doubt he dared to contradict me!!
I made it through the shift with nothing more than the odd shock or stab, phew what a relief. That's one of my fears, having a full blown attack at work. I have excused myself before now to go and take my pills when my alarm goes off. Most patients are very understanding once I explain why I've disappeared for a bit or clutched my face or eye for a few seconds.
If you can, I would recommend splitting your total daily dose into 4 doses. I take 400mg of Carbamazepine at 6am, then three further doses of 200mg at 12 noon, 6pm and 11.30pm. It works for me.
Good luck.
sandy5221948 susan33651
Posted
That's what I'm hoping to do. I was up 2 times during the night, and only an hour apart. First attack lasted 15 minutes, but I held the hot Jalapeno pepper juice on the roof of my mouth, then swallowed it, and the pain was gone with in minutes. One hour later, it came back, and this time the juice didn't seem to work. So, I held one of the peppers on the roof of my mouth with my tongue, then I ate it. My pain went away after about 30 minutes. Now, I still don't know if the peppers helped, or if these were just going to be short attacks. Since it was 6 hours since I had taken my meds, I took another dose. Slept until 9 am with no more pains. I don't have enough meds to take the extra dose in the middle of the night to last me till Thursday when I get to see the doctor. Since I only take 2 100 MG of Gabapentin 3 times a day, how would you divide that up? I thought the doctor would be able to figure out what I needed to keep these attack away, but from reading hear, it looks like we all still have attacks even with different meds. I used to have maybe one attack a day lasting for 4-5 hours, or maybe even all night long. Now, I'm having 1-2 or 3 a day lasting 15 minutes to 4 hours. I'm thankful for that because they are ones I can live with. The others were the kind that I prayed I would die with.
susan33651 sandy5221948
Posted
sandy5221948 susan33651
Posted
That's what I'll do. It's better to have 100 in me than none for 12 hours. I'm pretty sleep deprived to think straight right now, so I'm glad you thought it out for me. Could be the meds making me a little loopy too. I never experienced the loopy feeling at all yesterday, so I guess taking that extra dose last night is catching up with me. I'll take the loopy feeling over the pain every day!
Marty007 sandy5221948
Posted
I had an operation to ' untangle the vein and have it glued so that it could not move , sorry didn't ask much I would have let them do anything by then !! I was told afterwards that they found a vein and an artery were affected so both were sorted and glued.
the operation had just been developed when my GP went to a lecture and he wrote to ask the surgeon to treat me , I had the operation approx 16 years ago , I had 2 small holes drilled into my skull, and was left with a scar about 1.5 inches long which is right on the hairline and almost invisible. I was told that there were risks of nerve damage from the operation and I found a part of my lower jaw was numb afterwards , thus I think has now partially righted itself but to be honest it was a small price to pay , the surgeon was disappointed though as he thought there had been no damage done . I hardly notice it at all. At the time this was a very new and inovative new treatment , previously the only other option I was told was having the nerve tied off which lasted for around 9 months . I had 5 days in hospital then a month at gone to recover The wound and head were fine but I stupidly stopped taking my tablets overnight and got very bad insomnia so had to be weaned off slowly , I would notvhesitate to do it again but I am guessing other options might be available now . I was told that the pain is so severe tat they would have to give he enough morphine to kill me to stop the pain ,
i totally agree you deserve a cigarette , the attacks I found exhausting because I had to control myself and stay still, crying made it worse , thecrelief st the end of the attacks was massive but it was very stressful . Not knowing when another attack might strike was difficult too , often I stayed in , did nothing ' just in case ' please do contact me whenever even for support /chat . no one knows what it is like until they experience it xx
sandy5221948 Marty007
Posted
Marty, you will never know how much hope you have given me! As I said before, I haven't even made it to the neurologist yet. I went to see the ENT thinking if this isn't the worst sinus infection in the world, along with pus backing up in my face and head, then there is no hope for me. When he said I did not have any sinus problems, I broke down! Not just crying, but I was having a mental breakdown. He said a lot of things I don't remember, but then I heard him says some strange words (Trigeminal Neuralgia) I didn't have a clue about. Then he said, I'm certain that's what you have, and it affects "this area" and he put his hand over the exact areas of his face and head where I have those, horrific, evil pains! Right then I stopped crying and started listening. I asked him if it could be fixed, and he said absoluetly. He said he was sending me to a neurologist, and I thought he meant that very second...but he didn't! I told him I could not live through another attack, and he said he was going to give me something that would control it. I started crying again, and told him nothing could control it, that no pain meds helped. He explained that this was not just for pain, it was for nerve pain, and he promised it would work. If he had told me my head had to be split wide open, I would have crawled up on that table and let them do whatever they thought was best. Anything was better than this pain! This all happened on Nov 30th, and I could not get in to see the neurologist till Dec 15th. I told them if I lived that long I'd be there. I had already decided my only way out of this pain, and had told my family I loved them, but I couldn't take it any more. I had been suffering since the 28th of October, and with each attack it got worse, and worse. I saw 5 doctors, and 4 of them were at the ER with diagnoses of sinus problems, and migraines. I knew it couldn't be migraines, because there was no way people were living through this kind of pain! I"d also been to the dentist, but he found no problems. I wanted all my upper teeth pulled! I didn't care what I looked like. The ENT was my hero! I have had some pretty hard pains even with the Gabapentin, but nothing I can't live through. Now that I know the Jalapeno peppers stop the pains I get now, I'm really great! I don't want to go anywhere, or do anything either. I want to be home where I can scream, and cry in private if they come back. I had to have a physical yesterday, and after that we had lunch, All of a sudden I realized it was time for me to take my meds, and we were an hour away from home. Getting lunch took much longer than I expected. I told my husband to get me home as soon as he could!!! I was scared to death. When we were about 5 minutes from home, I reached for a cigarette, and realized my pills were in my purse. Gabapentin makes me loopy, and I don't think straight sometimes. I'm looking forward to getting my mind back, but if this is the swap off for never having those horrible pains again, I'll take being loopy everytime. I'm so glad you have been rid of this disease since your surgery. It doesn't work for a lot of people, and my prayers go out to them. I just hope and pray they have good medication for it! Like somebody else said on this board, I wouldn't wish this on my worst enemy!
deb5678 sandy5221948
Posted
I do know you need to watch dosage due to overdose and withdrawal is about as horrible as the pain
I have similar problems but need to get to the right neurological doctor
sandy5221948 deb5678
Posted
Dear Lord...don't tell me this stuff is addictive! I want to take meds as long as I can before I think about surgery. I say that now, but if the pains aren't controlled, I'll take the surgery the very day they return. It's almost time for me to take my meds, and I'm loopy now. I don't understand how this works on me. I can take Gabapentin, and not have any effects. Then, 3 hours later I get loopy! Or like now, it's been 6 hrs and I'm loopy. It comes and goes with me. I had an attack this morning at 4 am that only lasted about 35 minutes. It was not hard pains, but it wasn't easy ones either. It had been 6 hrs since I had taken my meds. I went back to sleep, and slept till 8:30, and got up and took my meds. I've been loopy all day. Tomorrow, it may not affect me like this at all. I just never know what I'm gonna get. Anybody else have this happen?
Stupid1 deb5678
Posted
Deb5678,
I'm the person that can I get addicted to anything, I have some kind of weird sister that's why I have trouble with different medications and stuff not working on me.
I've never did any illegal drugs, alcohol or tobacco, but medication I can not become addicted. Doctors told me, told me something in my system that stops this from happening morphine does nothing, oxycodone nothing, , coorrection it makes me , constipation, and make me throwup.
I have a lot of allergies to meds all my life I have bn sensitive to meds, many meds affect me like I am taking water in a pill.
I was in a experimental allergy clinic for 12 yrs, doctors R still trying to find out y powerful neds don't 'work on me bcause
this has bn going on since I was a baby, so dothing bcomes addictive two me,
I am not comparing myself to anyone else,,
but trying to maybe find out if this is y this dreadful disease happeneds..
So far I have not had any thoughts of suicide, and uf any out there has those thoughts please, call EMSA to be taken to hospitals ER and let doctors know, about the pain that one is in with this TN.
I just can't blieve neutosurgeon / neurologist and other doctors don't have not one clue about how TN happens to us.
God bless
us and keep us and give us peace