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
Stupid1 sandy5221948
Posted
B4 I had my endoscopy their was a foul smell like some was dead in my nose, maybe we have finally found something we all have in common.
God bless
us and keep us and give us peace
sandy5221948 Stupid1
Posted
Oh wow! I actually noticed before the face/head pains started that my eyes were matted every morning. When I cleaned them out, I noticed my fingers stunk! I always have a nasty taste in my mouth too. This must all be connected. I don't see the neurologist until the 15th. I'll let everybody know how that comes out.
holly35803 sandy5221948
Posted
Sandy,
Thaks for writing and sharing your history. I agree with the other posters that developing a strong relationship with a neurologist is important. Having said that, I find that since I develoepd TN I've been especially frustrated with the way modern medicine is overly specialized. How can people with chronic but unusual pain get a proper diagnosis and treatment?
sandy5221948 holly35803
Posted
The biggest problem I've noticed is that nobody wants to see me! When I called the neurologist I couldn't get an appt till Jan 26th even when I told them I was suffering unbearable pains. At least the ENT got me the appt for Dec 15th. I'm thankful for the smallest gesters. Somebody is finally listening to me!
Stupid1 sandy5221948
Posted
Make appointment in another state.
Some of forum TN sufferers who had great success, make appointments in those states.
Shame ur primary care doctor into getting u an appointment with a neurologist in another state.
And just sit back and watch how fast that neurologist jump to get in in as a patient, and if push comes to shove go to ER, if pain becomes unbearable.
God bless
us and keep us and give us peace
sandy5221948 Stupid1
Posted
Before I'd let anybody do surgery on me.....I'd go out of state and find one that has done this many times!
laurel3865 sandy5221948
Posted
Hi,
I had 2 MVD's and they both left me with a very severe chronic pain 24/7 that will not stop. 1st MVD got rid of the electric shock pain but left me with this painful involuntary movement that runs around and twist, pull on my mouth, face, forehead, top of head, behind the head...it is horrible....it never stop twisting and spinning like a tornado. No doctor has heard of this and I've been to numerous neurologists, ENT's, family doctor, chiropractors, homepathic doctors, accupunturists, neurosurgeons, pain management doctors, and the list goes on and on. I think it is so unethical that these neurosurgeons can drill into our skull and mess with our nerves that caused severe damage and just dismissed us when things go wrong. I have been suffering with this crap since Sept. 2014 and the 24/7 severe painful involuntary movement just won't stop twisting. I had to leave a very well paying career due to this crazy affliction. I now see pain management doctor monthly since he is the only one that is willing to help me. I have had 3 nerve blocks, but it didn't do a thing. I got at most 4 hours of pain relief from that. I am now on 1800mg of gabapentin, 300 mg of oxcarbazepine (trileptal), 12mg of hydromorphone (dilaudid), and 1mg of clonazepam. This is too too much drugs for my little body, but unbelievably it only helps about 20% to 30% at most. I know how it feels to be in so much pain that you are willing to have these surgeons to do whatever to take it away. I would strongly advice anyone who is thinking about getting the MVD to please do lots of research and get at least a second or third opinion. No one ever even offer the less invasive surgery to me like gamma knife or radiofrequency. If I had to do it again I would take one of those other routes first instead of letting the surgeon drill into my skull. Their are a lot of other people with had successful MVD surgery but I guess I was one of those unfortunate one that left with this crazy mess of involuntary movement that runs around all over my face and head nonstop 24/7 that no doctor can help me. I pray a lot and somehow God gives me strength, but I was in deep depression over this mess this time last year. I pray for us all to be painful so we can have a normal life with our family and friends.
sandy5221948 laurel3865
Posted
God bless you! Nobody should have to go through this! I understand that depression. Sometimes I think it's more like PTSD. I'm praying for all of us. I read somewhere that they expect to have a cure by 2020. I'm 68, so I'm not sure if I'll be around. Your case just breaks my heart!
Stupid1 laurel3865
Posted
Laure13865,
My BFF told me the best way to get my double vision(I have double, horizonal, vertical, 3d vision) to get better is to walk it off. She said that SINCE I was the one who told her how to rebuild her bones after the doctor told her that she was getting early osteoporosis, and that I told her to walk 12,000 steps a day.
She said since my surgeon had damaged by nerves for my vision, then walking should make my vision nerves heel faster, so I went back to walking and I can now see in front of me.
I can't look down and need help stepping up on curves, the lines in street blows my mind and I can't look @ TV without seeing rwo people crossing each other in a X pattern.
On TV a persons nose is above their forehead, I have better stop now, I am making myself dizzy.
The jest is had MVD and this vision thing us killing me, wish I had known about other procedyres b4 MVD, but so far shocks stopped but still get pain in gums but not as bad, I am very grateful for the shocks bn gone.
When I walk I let everyone know y I had not bn walking everyday like I used to.
I explain what TN is to everyone I come in contact with.
So guys, let's keep praying for each other and let everyone we come in contact with know what trigeminal neuralgia it's all about this is the only way that the doctor says he found out why people get this Dreadful disease or should I say Dreadful debilitating disease.
God bless
us and keep us and give us peace
Happy Christmas to all and to all a good-night
Stupid1 sandy5221948
Posted
My uncle is 115.
age is but a number.
R we Job?
God bless,
us and keep us and give us peace
sandy5221948 Stupid1
Posted
laurel3865 Stupid1
Posted
Yes, please take daily walk. I was like you, had severe dizziness, double vision and many other horrible afflictions after both MVD's. I still have sever face pain all over my entire mouth, face and head. So why have two MVDs one may ask? That's how desperate we all are to get rid of this horrible condition. I used to fall or about to fall daily just taking small walks around the house. I was on a walker for a while. I was so afraid to be alone because I was so afraid to fall and faint (which happened on daily basis). So, I was house bound for a while due to fear and went into deep depression for 5 months where I thought of taking my life (the pain and involuntary movements due to these blotched surgeries were horrendous). Then one day the Lord to me to trust and start taking small walk on my own while my husband was at work. I started small walk in my backyard, then was brave enought to go outside and take baby steps. Oh my, the outside world intensified my dizziness and double vision. But day by day, my double vision improved and the dizziness became less. I then took longer walks around the neighborhood, then eventually after 10 months or so, I started walking the park with my husband. I eventually start driving in short distance around my neighborghood. Today, although still suffering from pain and involuntary movements, I can drive, walk and pretty much do a lot of things on my own. I wish I wasn't on so much drugs and even that they don't take away my pain. I pray daily that God will take our suffering and pain away from all of us.
God Bless and stay positive.
sandy5221948 laurel3865
Posted
Is there nothing they can do to help you? Have you seen where I wrote that Jalapeno peppers have helped my pains I have at night? I bought a jar of these peppers, and I hold the juice on the roof of my mouth, and then swallow it. Then I hold a one of the round slices on the roof of my mouth with my tongue, and after a few seconds I chew it up and swallow it. I may have to repeat it, but within minutes I get relief. It would happen again about an hour later and I'd do it again. Then, I sleep through the night. I wish you would try this to see if it will help you. It's worth trying everything.
laurel3865 sandy5221948
Posted
So far no doctors can help me and I've traveled out of state to get help as well. No one has heard of his condition. Can you tell me the name brand of jalapeno peppers you're taking? Are these the green jalapeno peppers sliced up in a jar? I will definitely try anything.
sandy5221948 laurel3865
Posted
I'm so sorry for you! I've been almost 48 hours without any pains, and I'm hoping maybe the pills are in my system well enought that I don't have attacks any more. I haven't really asked if anyone on meds can say they are controlled completely. I guess if you are asking about the peppers your pains aren't controlled. Oh, and the peppers are Hot Jalapeno Peppers Deli Sliced. The brand is Mezzetta.