NeuroTalk Support Groups - atypical TN...MVD on way

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Trigeminal Neuralgia (https://www.neurotalk.org/trigeminal-neuralgia/)

- - atypical TN...MVD on way (https://www.neurotalk.org/trigeminal-neuralgia/156513-atypical-tn-mvd.html)

Quote:

Originally Posted by ipreferdosequis (Post 804796)

thanks for the tip, where can i find this video?

The link is in post #3 of this thread, above.

Quote:

Originally Posted by EE03 (Post 804873)

The link is in post #3 of this thread, above.

haha wow, sorry didn't see that... i even looked for it the first time you mentioned it... guess my meds makin me loopy:p

Quote:

Originally Posted by EE03 (Post 803932)

The thinking has shifted regarding the benefits of an MVD on atypical pain and the timing seems to be more important (as in the earlier the MVD from the onset of pain, the better).

Thanks, that's what I wanted. And it was helpful. I did read something recently about the sooner the better with the MVD, which surprised me because I was encouraged (or at least not cautioned against) trying other things first when medication wasn't enough. I was wondering why I wasn't encouraged to go right to the MVD, so it is helpful to see that as a change in thinking rather than bad advice.

Quote:

Originally Posted by ipreferdosequis (Post 804931)

haha wow, sorry didn't see that... i even looked for it the first time you mentioned it... guess my meds makin me loopy:p

No problem, it happens to me all the time.

TN that is centered in the mouth?

Isn't there a type of TN that is centered in the mouth and throat? I thought I saw something like that on one of the TN Association sites. I wish I could remember......well, a lot of things.

Quote:

Originally Posted by booklass (Post 806443)

Isn't there a type of TN that is centered in the mouth and throat? I thought I saw something like that on one of the TN Association sites. I wish I could remember......well, a lot of things.

You might be referring to glossopharyngeal neuralgia which involves the ninth cranial nerve(I think). See this link http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002602/

Quote:

Originally Posted by ipreferdosequis (Post 801759)

My TN conditions started when I was 19. I have the atypical TN with an unrelenting deep burning, boring pain throughout my gums, ear, throat, tounge, all on the left side of my head/face.. that is there from the moment I wake till the moment I sleep.

I got nothing positive to tell ya about TN...it took about 3 years for anyone to even diagnose me with atypical TN- after going through a handful of family docs, group of dentists, ear/nose/throat, orthodontist, TMJ expert...an oral surgeon finally sent me to a neurologist whom then diagnosed me. After an entire year of testing meds like tegretol/carbamezapine/oxcarbazepine, baclofen, amitriptyline, savella...all with almost no pain relief whatsoever, I was sent to the neuro-surgeon who wants to perform Micro-Vascular Decompression surgery, to relieve the pressure created by my blood vessel riding against the nerve.

My atypical TN is very much affected by foods. In fact most foods seem to make my TN flare up, especially coffee, potent onions, salts/peppers, spices, dark beers, ect... pretty much anything that will stimulate the nerves- which is almost everything. Hell, when I take a sip of ice cold water as soon as the liquid touches the back of my gums I feel a horrible sensation travel throughout my ear and down my throat.

TN has literally taken over my life the last 4 years. I am unable to continue college due to the pain making concentration and comprehension much more difficult, plus the meds are also a huge learning distraction as well. I'm currently on Lyrica 150mg twice daily...makes me a zombie but usually dulls the unrelenting pain, key word there is USUALLY. However its still not worth living this way... the pressure on left side of face is almost unbearable and messes with my ear/hearing a lot. aTN makes me depressed and moody... each day is a struggle. My MVD is scheduled for a month from now...I gotta admit it scares the hell out of me.

Hi I read your post where you mentioned about the intense burning that decreases when you eat. I too have had MVD 6 weeks ago and have had relief with some of my symptoms. However, I am experiencing the exact same buring sensations you mentioned when you were 22. I know it has been awhile since you posted that remark but I was curious if anyone was able to resolve this problem? Or helped relieve the pain. I hope to hear back from you as I have lost a lot of confidence in getting a diagnosis. Thanks and I hope your living a pain free or as close to a pain free life as possible.

Just a few quick notes....

OK, get a second opinion. It's your health in question,, where are you located,,perhaps someone knows an MD in your area.. I had an MVD and no it did not work but that does not mean I don't believe in it, I do. It has helped many people.

Have they done a MRI and an MVA??? (MVA is the vascular system and will usually show if there is a problem or inconsistency with the blood vessels) both are mandatory (I think) for being able to diagnose if an MVD is appropriate.

As surgeries go I think the MVD is not all that bad. I spent one night in Neuro ICU (again mandatory) and was up walking the next day...my back surgeries were much worse. Hell my gallbladder surgery was much worse.

OK some basics...get rid of all aspartame, caffeine, MSG and avoid sugars,,,all will increase TN pain.... get lots of sleep (get ambien from your MD if possible) the more sleep the better....avoid stress ( at least TRY to!!) learn to meditate,,it helps with stress,,even if all you do is learn some basic breathing techniques,,,it really does work!!! Do not use any tooth whitening products,,they sensitize the nerves and make TN worse. Of course drink lots of water and try and eat as healthy as possible,, avoid processed foods.
Also,,remember to take a good B complex vitamin and a multivitamin with selenium,,, Vitamin D with magnesium and calcium are also advised because of side effects from the anti-convulsants...

I encourage people to always go back to the basics because it seems that as the disorder progresses we all have a tendency to forget the basics and no matter at what stage we are we all benefit from remembering to do the basics because they work....

As for the surgery,,,my concern is that your MD's may just be grabbing at this procedure because nothing else seems to be helping control your TN. That's why seeking a second opinion is SO important. Your insurance company has to give you one so do it....this is your long term health and you want to make sure that you feel confidant that you and your MD's are making the right decision... even if you postpone the procedure to do it...there is some question about an MVD for atypical TN and if it might make it worse...I would really encourage you to get a second opinion...

The only other procedure that MIGHT be available is a PNS...it is still experimental and only done at a few certain hospitals...you can check here on the forum and read about the PNS systems ( yes I have one and no not everyone is a candidate for the procedure) because most likely your MD will not be able to give you answers on this... It is not normally done on TN patients so most Neuros don't know anything about how well these work or if you would be a good candidate..... you'll get more info here on the forum....

If you have any other questions you can always private message me and I will help with anything I can....good luck..I hope it all works out for you....Beth:hug: