Just diagnosed - struggling to find support and information

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I was just diagnosed with trigeminal neuralgia. My only support system is my husband. I reached out to the Kansas City contact for the Facial Pain Association but their group only meets every other month, next meeting is in January. The contact did recommend one of their books. And, sure enough, it is the highest ranked booked for this condition so I've ordered it on Amazon. ("Striking Back!..."wink

Then I looked further on Amazon and... where are the books? At least with decent reviews with up-to-date information, etc.?

And I don't just have TN but I also have non-stop pain between the lightening pain. There seems to be so little information, so little support, so little... anything. Or am I just not seeing where the wealth of resources are?

I've looked online, and usually I'm an excellent researcher, but this time I've fallen flat. Any book recommendations beyond the one I ordered? Any online support groups I could join? (Since I'm thinking there aren't more than one in the Kansas City area.) Any, any, any information, medical, emotional, any tips, anything, let me know. I'm open to making new friends, contacts, just trying to get my arms around this condition and not get sucked into this black hole. Fyi - Doctor has me on gabapentin 300 mg 3 times daily. Helps but far from perfect. Pain still there. Worst part is my concentration is going down the drain and my life requires detailed concentration. I would try Lyrica but insurance doesn't cover it for this condition. As I'm on other meds, we are trying to keep me on a med with the least amount of side effects. But at this point I need something where I still can have a life. And I tried Lamictal for migraines for years and I know that would not work for this. The gabapentin is like the nerve whisperer....it's like it's shushing my nerves and calming them. Not perfectly but it helps. And why is the pain worse in the morning (about 30 minutes after waking up) than at night right before bed? It's crazy! And I heard some other people are the same way! Sorry for the long post. I guess I need to start a personal private journal as well. haha

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  • Posted

    Have you seen a neurologist?

    Have you had a scan?

    Gabapentin is good - but usually carbamazepine is first line. But it usually requires a neurologist to initiate it.

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    • Posted

      I started with gab and ended up with Lyrica. It had a little less of side effects but still does a number on me. We pair it with a mental alertness med and it helps. But it seems other meds can make TN worse so I need to be careful. Yes, it was when I saw the neurologist that I was put on Lyrica. Made a difference! 

      They scanned my entire head. I'm not joking. Because at one point they thought I was having something else going on. They could not find anything at all.

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  • Posted

    Im so sorry to hear what you are going through. Yes TN is really altering our life. Nobody wants to live in pain!! So far all the information about the medicines and procedures to cure TN are all sketchy. I have mild TN for about a year now but accelerated the last 2 months. I tried Vitamin B1B6B12 3xday and my pain dissapears. It works on me and I hope to God that this  will work for you. There is nothing to loose since its only vitamins. In the US you have Vitamin B Complex. My Doctor told me to use it just 2x a day. Im not trying it yet coz Im still in The Philippines. The B1B6B12 eliminate my pain 99.9% so far. I pray this will work for you too. God Bless!!
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  • Posted

    Hello Astrogirl!

    A quick thought - if you google the Trigeminal Neuralgia Association (TNA) in the UK, and get onto their site you can access loads of support info including booklets and newsletters which cover all of the concerns you have mentioned. Not sure if you’d need to join or whether you have to live in the UK but it’s worth it for you to pay a few quid to access all this up-to-date information. They also have phone and email help available. Give them a try. 

    Good luck

    Big D 

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    • Posted

      Thank you! I'm sorry for the long delay in response. I'm so scattered these days with changing meds. That is awesome! In the U.S. we don't have our own association. I will definitely look into the group! Thank you!

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  • Posted

    Hi,

    I often get more pain in the morning than the evening. I've adjusted some of the medication and doses to give me the best reduction in pain, so far so good. As army guy says Google the UK TN Association, they have a wealth of information. Also try the migraine and facial pain site (not sure of exact Web address).

    Many people on this forum have some great advice, I found the following the most helpful: set an alarm to the times you need to take the medication and take it religiously at those times. I use a seriously hot (volcanic hot!) hot water bottle against my face which helps to an extent.

    One forum member suggested a couple of vitamin supplements, especially the B vitamins which makes sense as these are vital for the proper functioning of the nerves throughout the body. Also reduce your intake of foods which are linked with inflammation (it may help as some cases of TN are triggered by infection).

    You can always send a private massage to anyone who responds to you, see the envelope icon in the name box? Click on that to access this function.

    All the best.

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    • Posted

      Tut! Message not massage, although that might help, some recommend osteopathy and chiropractic therapy of the neck to ease their symptoms and pain.
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    • Posted

      I tend to stay away from manipulation of the spine and neck and such. I have arthritis and found it doesn't help and can be dangerous. I believe mine is truly the nerves acting up. Yes, high doses of B-12 along with a B Complex help, especially with the side effects of the medicine. I tend to be in more pain in the evening, when the rest of my body is achy as well so it makes sense. I may have to try to hot water bottle! Thank you!

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  • Posted

    Hi There,  Take the advice of Big .D and others and join the F.P.A in the U.K. Lots of information and a periodical on updates on research. Please don't be scared about all this. You're a young person and there are many paths you can to take to lessen or get rid of the darned thin altogether. Also I agree with others  that the first medication you should be prescribed is Carbamazapine, the most effective drug for T.N.which should be prescribed by your own doctor. Keep us posted, sweetheart. 

      Gill

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    • Posted

      Thank you, Gill. I'm so sorry to you and everyone else for the delay in responses. I posted this and then had a panic attack and couldn't face anything about the TN at all. For months. Except dealing with the pain. But it was like I was overloaded and was not in denial but just couldn't deal with it at all anymore. So I posted this and then all of a sudden I could no longer read anything else about TN, including any replies to my post. So I am so sorry. I ended up on Lyrica which seemed to help. Still makes me groggy but I don't see that as something the others won't do either. And the Lyrica helps. Thank you!

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  • Posted

    Hello, I have ATN (Atypical Trigeminal Neuralgia), I am 27 and I've had it for 3 years. I don't get shocks, I have deep aches and burning constantly. The type of pain, and what medications work best are the main difference between TN and ATN. It is possible to have both types of pain.

    The best website I have found to learn about all face nerve pain (primarily TN) is livingwithfacialpain.org They were formerly "living with TN" but they expanded to include all the cursed face pain sufferers! YAY! They have extensive forums where people from all over the world share TN advice and commiserate. They have resource pages on medications, surgeries, and non traditional treatments like herbs and acupuncture. They even have a "FIND A DOCTOR" page where people can recommend docs from all over to others, since finding a doc who actually knows about this disease is difficult.

    That website saved me from (more) months of struggle figuring things out on my own, and talking to people who understood my pain was invaluable!

    Sorry you are suffering, and good luck!

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    • Posted

      Wow! Thank you so much for giving me the link and sharing with me what happened to you! Like I told the others, I posted this and then had a panic attack and couldn't even read the replies until now. It was like overload. This is amazing, this website! Have you experienced the feeling of your face drooping a little? I'm not saying it's visible to anyone, including anyone close to you, but something that you feel. Like a numbness, at least. If so, I think I've had this a great deal longer than I realized and it was only when I had an especially bad episode that it was diagnosed. It's crazy, all of this. Yes, I have came to think I have both. Not sure my neurologist thinks so. But I'm not sure she has experience with people who have both. But what I feel on my left side is a very different kind of pain than I feel on my right side. But I definitely have pain on both. But it's only on my left that I also have TN symptoms as well. And it where it went critical pain-wise and was horrible for a while. And is where the numbness is at times.

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  • Posted

    Contact TN UK or TN US.      Great for help and support. Also a sight OUCH.    there is lots of help out there and lots of sufferers that need you as much as you need them.       Good luck and take care.
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  • Posted

    My daughter has Trigeminal neuralgia.We are lucky that we live in Wales uK and don't have to pay for any prescriptions.You need to find a good neurologist who can get you an MRI scan and a CT scan to see what's happening to the nerves in your face- then refer you to a good neurosurgeon who can explain all the options to you.It may be that they'll suggest simply staying on the medicines ,as they said to my child .The best med for TGN is Carbamazepine (Tegretol).This COMBINED WITH Pregabalin (Lyrica) is probably the best way to treat TGN.Pregabalin(Lyrica) is the neewer,updated version of Gabapentin,It causes fewer side-effects  but the brain fog is real...It was suggested to us to raise the dose of carbamazepine (Tegretol) so that you can lower the dose of Gabapentin-and that was a better outcome.Mixing the two is good.Getting the dose of each right is a matter of finding out what controls the pain best FOR YOU.Good luck with all that.I hope you see a good neuroconsultant soon though-hassle your GP for a referral.

    X Beth

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    • Posted

      Like I told the others, I posted this and then had a panic attack and couldn't even read the replies until now. It was like overload. Really? Combine both meds? How does adding the Tegretol help? Is it for the pain? Would it lessen the groggy side effects of Lyrica or what boost does it give Lyrica? I think my neurologist hasn't encountered someone quite like me before even though she has had TN patients before. I'm currently on 150mg Lyrica twice a day. It helps but I'm groggy and it isn't perfect. And there is still numbness and sometimes pain. It's such an elusive thing to figure out.

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    • Posted

      Hi Astrogirlbunny,

      Sorry to hear about your pain.

      Try hot tub or a warm shower (make sure you use a scarf and warm bath robe after to stay warm). This helps release tension.

      If it is not too cold out, a 30 min brisk walk warms up the body. I find that staying home and not doing anything worsens the pain - activity helps.

      Lastly, do try to find a good acupunturist (my pain went away - I had TN for 3 years) and stop whatever is causing you stress (not an easy task but worth looking into). Avoid foods that spikes you blood sugar levels (leads to neuropathy).

      Get well soon,

      H.O.P.E. Hold On, Pain Ends

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    • Posted

      Thank you. That sounds like good advice. I did find that riding the elliptical bike on a regular basis made me feel better. I think getting the blood flowing is why. I didn't know about the blood sugar thing. I agree staying home makes it worse but at the same time it is so hard to fight the urge to just hide under the covers when in pain. But I'm trying. I will take more hot baths/showers. I think that will help too. And, again, I didn't think about the blood sugar thing. I'll work on that. Thanks again.

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