Just diagnosed with trigeminal neuralgia...helpppp
Posted , 4 users are following.
I've had pain similar to what I am experiencing now on and off for months. This time round it was more severe, sharp, I can't touch my right side of my face, I produced a rash got told a week ago it's shingles. Was prescribed antivirals only to be told 2 days ago it's not shingles it's trigeminal neuralgia.
I am on carbamazepine 200mg 3 times a day to start me off. I have taken it for 24hojrs now. Has anyone experienced the taste of blood with it? I've only started tasting blood over the last few hours and I don't know why. I'm also getting woken up by these pains that are just getting stronger and stronger.
I do suffer with migraines and under a neurologist but I'm not with her until August. Is there any way of easing these pain because I am just not sleeping and when I get to sleep they wake me up and it's driving me insane.
Thanks
1 like, 5 replies
Tnhurtsme amy57522
Posted
I would start slower with tegeraol it's really strong made me feel really drunk after 3 days
sandy5221948 amy57522
Posted
First of all, I was told I had trigeminal Neuralgia. Then, I was told that it was either that or cluster headaches. According to my neurologist, the attacks I was having were lasting way too long to be TN. He also told me that TN didn't usually happen while you were asleep, and a lot of my attacks did. It seems that cluster headaches are caused by the Trigeminal Nerve, just like TN, and the surgery for the cure is the same. After suffering with these attacks for 2 months I was put on Gabapentin that helped so, so much! I still had some strong attacks, but nothing like the ones that sent me to the ER 4 times, to the ENT doctor, to the dentist, and finally to the neurologist. After I was told it could be cluster headaches, I looked it up on the internet, and I began to think that was exactly what I was having. My doctor had said if it was cluster headaches, 100% oxygen would stop an attack within 15 minutes of breathing it. He wanted me to go to the ER during an attack and get them to administer oxygen to see what happened, Instead, I found a tank of oxygen on Craigslist, and I bought it. OMG! My next attack only lasted 10 minutes with this therapy. I figured it was a fluke, but I grabbed the oxygen as soon as the next attack started, and it was gone in 7 minutes. This worked every time I had an attack! I nearly cried, I was so happy. Wouldn't you know it...as soon as I got a prescription for oxygen, my attacks stopped. Cluster headaches last from 4 to 12 weeks in a cycle. I was right on the 12th week. The pain I experienced with CH had me ready to end it all. I had already decided how to takemy life, because I could not keep going through this hell. To think something as simple as oxygen stops these attacks is almost unbelievable. And....I argued with my doctor when he told me he thought my attacks were cluster headaches. I thought those headaches were just pains that were in clusters....and I was dying, for pete's sake! After I googled the symptoms, that's when I was more open to that diagnosis. I've only been pain-free for 2 weeks, and I'm already reducing my gabapentin so I can stop taking it. I wish you would try the oxygen therapy to see if this works for you. It can't hurt, and it could be just what you need. I was thinking since you have attacks at night, cluster headaches could be your problem, too.
sandy5221948
Posted
wavedancer amy57522
Posted
I know how painful shingles is and with a rash it would have been easy
to misdiagnose TN. Have you had an MRI yet? Is it your GP that has diagnosed
you with TN? It may be worth asking if they can refer you to a neurologist
that deals with TN because that maybe a different specialist to the one you
see for your cluster headaches.
I do know from my own personal experience that youcan get lots of odd things
happening with Carbamazepine. You are on quite a high dose to start off on.
I still get woken up at night with pain, especially if I turn over onto my right
hand side. I prefer to sleep sitting up, which stops it happening. I've spent
many long nights walking the floor thinking that I just couldn't cope with
the pain and even thinking about ending it all. There is no quick and easy
cure. Some people find different combinations of drugs work better than
others. The metallic/blood taste I would think is down to the Carbamazepine
I can't drink tea because of the taste it left in my mouth and I went off some
things completely. Stick with it if you can or if the side effects become unbearable
go back to your GP and maybe try other drugs that you may be better suited
to.
sandy5221948 wavedancer
Posted
According to my neurologist, having a TN attack at night is very rare. Not all of my attacks happened at night, but my worst attacks did. I tried sleeping propped up, but it did not help me. Cluster headaches happen about the same time of night each time. I usually had attacks every other night...and if I didn't have one the 2nd night, I would have one during the next day. No pain pills helped. Not even the migraine pill my doctor gave me, and he promised me it would work...but it would take over 30 minutes to take effect. The only thing that did work was the Gabapentin, and I still had breakthrough attacks, but they weren't as severe as they were before. Because of the way my attacks happened, the neurologist was pretty certain my attacks came from cluster headaches. From what I've been reading, TN attacks only last from seconds, to minutes. My attacks were always hours long. When I had attacks after being on Gabapentin, the only thing I could do was to hold wet cloths that I heated in the microwave over the left side of my nose, my eye (where it hurt the worst) my forehead, and over to my ear. Sometimes it took 10 minutes to help, sometimes it took an hour. But the oxygen.....was a miracle for me. I never got to try oxygen when the pains were the killer types....thank God those were under control. So, I can't speak as to how good it works for those. But, the ones I had while on Gabapentin, worked each and every time. To me....it seems if you aren't having attacks that last from seconds to minutes, you owe it to yourself to figure out if you have CH instead of TN. As I said before, cluster headaches are caused by the trigiminal nerve as well. The surgery for both are the same. The only difference is that oxygen works for one, but not the other.