I have just joined the site sorry if I am posting in the wrong area. I have just been diagnosed by my GP as having TN which I believe is V1 from what I have read.
It first happened in about May and was so bad I actually passed out with the pain. It only happened the once and thought nothing else about it.
I then had nothing else until mid October. It happens on my right side from my nose over to my ear and the top of my head. I have a constant headache and get unbearable stabbing behind my eye but also my eye burns. I was first give Tegretol (carbamazapine) but had a very bad reaction to it (itchy and the skin in my mouth blistering and peeling). I have since been given Neurontin (Gabapentin) I am currently taking 600mg a day (200mg 3 times a day) but it doesn't seem to be doing anything to really help just makes me sleepy and tired.
I am not to bad in my house (a couple of attacks a day) but the slightest breeze/cold/draft (we have just ended a British winter so this is constant outside) near my eye or washing my hair or rubbing my eye and it kicks it all off again for days. I am stuck in my house!
I have also been reading up on it and apparently it is rare in people under 40 but I am only 29. Is this right?
Welcome to the group! Sorry you have to be here, but you will find it is a great resource.
It does sound like you have TN. I was also allergic to Tegretol, and was given neurontin. I actually did not find relief until I was on a much higher dose, 600 mg 4x a day, but that did not work well enough for me, so I had MVD surgery.
Everyone seems to have different results, and reactions to different medicines. It may take awhile to find what works best for you, so be sure to keep in contact with your doctor, and keep trying until you find the right one.
Please keep postingnyournquestions, as we are all here to try and help each other.
Best of luck
Christine
Welcome here. Lots of great info and support. My first suggestion would be to get a couple of beautiful, cozy scarfs. I have even worn one to the beach. If you drape it right and add some big sun glasses and lip stick people think you are fashionable and not odd. You will ho loony inside the house. Trust me on this as I have been on disability for a year now. Secondly, have you tried a heating pad or ice pack? Many folks find relief with those. Does noise set off the pain as well? TN does not seem to discriminate with age so much anymore. Sadly. I would suggest you get the book Striking Back. It is an excellent resource! I wish you many days of being pain free. Till then, rock that scarf!
Hey Sashangel. Sorry you have to be here. I was diagnosed at 22 or 23 and am now 30. There is currently one member posting who is a senior in high school. It does happen to us younger folk too.
I too am allergic to tegretol and neurontin/gabapentin alone doesn't do the trick. My Dr. just put me on Baclofen (it is actually a muscle relaxant) with the neurontin. We'll see what happens. I have plenty of questions about it.
The good news is this site exists and we can ask questions, vent, and even laugh about things together. I have found it immensely helpful. I just discovered it in late Sept. of this year. Anyhow, I hope things start to look up for you!
Hi Sashangel! So sorry also that you have this TN condition. Go slow and build those creativity muscles. Being creative about how you approach keeping pain free, how to deal with the pain, how to live life. I look at the forum discussions for tricks and tips on how to deal with every aspect of TN. Don't hesitate to provide your input. By exercising your creativity muscles and responding to others questions you will not only help others but yourself as well. Your mind will start generating creative approaches. We are so honored to have you reach out to the forum and I hope we can be of good service. Tina
Hi I’m Helen and I’ve had dreadful pain for 3 years now. I experience pain in all 3 branches these days. Pain gets out of control often and now I’m having steroid injections alongside my meds. I get both typical and atypical types of pain. Its very hard at times. I’ve had an extended period away from work to bring the condition under control. I’m due back in a week. I’m relieved but very nervous. X
Welcome sashangel!
Wow! You describe the type 1 V1 pain almost exactly as I experience it. (I additionally have type 2 in V2). I would drop to my knees when the shocks first hit me. I have heard that V1 pain is the worst. I hope you find medications that help or can get MVD. I have a headache specialist neurologist that can deal with the daily headaches and migraines and the TN. Ice packs over my nose, and on my eye help me. Like you, I not only get electric shocks from top of head down forehead and nose but my eye feels like bleach is being pored in it and stabbed by an ice pick and also I also feel like I’m smelling horrible chemical or bleach. I twist up a Kleenex and put it in my nostril and it really helps if I can’t breathe through that side. Like you, the slightest breeze on my eye sets it off! I can’t wear sunglasses because it causes horrible nose pain. When I have to go outside or in a car during flare ups I cup my hand over my eye. My advise is to just try different things, meds, positions, etc. until hopefully you find something that works for you. Good luck!
A lot of Us have been and are going through what you are going through.
I was about 25 when I first had symptoms and diagnosed at 32 (now43)
Quick note about the drugs, They some times take a while to come to full potency IE a month, So stay on the gabapentin. (I'm on the same dose).
Never stop dead on the drugs tail off slowly as the doc's etc advise. I had a bad experience stopping suddenly on the drugs by mistake. (Ran out and could not get a refill for 2 days. Big mistake)
You will probably end up on a mix of drugs that over time you will work out what helps you.
Note What helps and works for you wont help or work for others. Its a matter of trail and error.
I understand the cold sets off your TN, If you can (not many can though) blow hot air (Very hot if you can take it) and see if this has the opposite effect.
I get bad TN from Cold breeze like most on here but can handle hot to very hot air and this helps to lessen the TN effects. Sometimes it will stop the TN for me. A hair dryer set to low speed but Hot works sometimes.
Thanks guys and gals. It is nice to know that there are others going through it and it (excuse the pun) isnt all in my head. No one else I talk to seems to know what it is and I am sure they think I am lying about it or that it can’t be that bad.
Unfortunately I can’t wear glasses either at the minute even my normal ones which probably isn’t helping my general headache.
The best way I can describe the pain in my eye is if you have ever had really cold hands or feet and have put them in hot water and they feel numb for a second and then it is so painful you want to take them from the water but can’t. If you think of that concentrated down to the size of eye and times it by 100 you may get some where close. Unfortunately I can’t just take my eye out.
I spoke to my GP yesterday and he has upped it to 300mg 3xday and then working it up even further.
I know I couldn’t use an ice pack but I am definitely going to give the heat a go.
I have been given Morphine Sulphate to try and control the pains on a night so I can get some sleep but I only take it if i really need to. Between the Neurontin and Morphine I am constantly tired.
So sorry! They say it is rare in people under 40 or 50, but being on this site, I have seen many people under that age with it. You may need a different med or a higher dose of your current med. Contact your doctor to find out what they think.
Hello! Welcome. I'm glad you've found this site. Having other people to talk to who "know" what you are going through has been a tremendous help to me.
As for age...yeah, rare (so they say) under 50-ish, but i'm 39. (and have been having attacks for the past 6 or so years) So, *shrugs* what do "THEY" know?
I also have the problem with the slightest touch/breeze setting off my pain, so i understand completely. I always have my scarf handy (but then the scarf touching can hurt too...lol)
For drugs, i am having pretty good success with tegretol...but i also take gabapentin and baclofen....the baclofen has help a great deal. I heard it mentioned on here a few times and asked my GP about it. Before, with just the tegretol and gabapentin, the pain was better..but still very present. With the added baclofen, there are some days that i am relatively pain free. So if you havent already, maybe ask about it.
Hoping you find peace and companionship here with us,