Silly yet helpful tips that helped me through the worst

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Thought I’d add a few things that to other people might sound crazy but I found helpful when I went through the worst attacks.

One thing, is that the pain medication originally prescribed to me with Tegretol actually triggered more things~it was Percocet. It made my nose itch which then would trigger burning on my nose and cheek so I stopped using it and it stopped~~one less “symptom” to drive me bonkers.

You can trick your “milder” symptoms by distracting the nerve. If your face is hurting along your lower jaw or feels hot then try to tap it with your fingers or get a cool (not cold it will make it worse) washcloth and place on your face. I found that putting a towel in the crisper drawer of the fridge worked great lol.

Oh, and for one of the most painful symptomsyou know the one where you feel like someone is pulling out your teeth one at a time with pliers~ drink through a straw…with tap water room temperature. I dont know why but something about a slow straw drink moved the muscles in my face or something just enough to alleviate the pain~~~even if only for a few seconds.

Also i noticed stress to be a major trigger for the more painful attacks. Calm yourself and remove yourself from whatever environment is stressing you.

When it feels like your lymphnodes seem to swell around your jaw and right under your earmicrowave a washcloth for maybe 20-30 seconds and press it right under your ear it will help. DONT use a heating pad its too hot and will possibly trigger a more severe attack~the correct heat is somewhat of a trial and error so be cautious trying that.

If your lips start burningnibble themit normally will make it stop and just sort of itch instead.

For migrainesthere really is no help. Muscle relaxers, midol, and your prescribed medication will help somewhat but Ive learned you pretty much have to wait it out its helpful to cover your eyes blocking out all light and try to fall asleep til its overso if your at workleave. Trying to stick through it will just make you sicker.

Earachesthere is nothing you can do to help honestly since its not really in your ear that hurts you just feel like it isits actually nerves that run right beside it. DONT use earache drops and etc it just adds a new annoying sensation lol.

I wish I had tips for the electric shock attacksbut I havnt been able to find anything to help those other than taking a sleeping pill and trying to sleep through the worst of them. All the reports that state they dont believe you have symptoms while you sleep and etc are NOT TRUE. I found that the WORST of my attacks seem to happen very late at night or early in the morning. My husband has woken me up many nights because i was in pain in my sleep~In the beginning I woke up when it would be really painful but now I sleep through it most of the time~~~You will realize the longer you suffer from this the higher your threshold for pain is.

Wow that was alot longer than I intended it to be lol…so I’ll stop here.

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Sarah,

I agree with all of your tips but I figured out what triggered my bad attack the other day, I went out and my daughter and I decided to get a milk shake (real one) a thick one and I used the straw trying to suck and it wasn’t long the attack started. Its amazing that things we have taken for granted change. Let me tell ya I will think about that milk shake for a long time as it will be the last for quite some time but oh how good it was. Hope your having a good day and if not maybe my silly story will put a smile on your face…LOL
Clemie

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Here’s one I use for the zaps and prolonged electric shocks. I got this from my accupuncturist. Since the middle finger on the hand represents the face and the first joint (from the tip of finger) is about the area of the mouth, holding your left hand facing you, take a pen and roll it up and down that joint with some pressure. It should be ever so slightly uncomfortable and you will feel some crackling. The crackling wil lessen the longer you do this as you are breaking up the stress points. I have had this work and still use the technique. Judy

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Thanks Sarah C. for starting this discussion. I’m newly diagnosed and struggling with medication adjustments (Lyrica). I am sure the tips you, Judy and Sarah H. gave will come in handy. I just tried the finger pen thing just to see if I could follow directions (Lyrica :)!! I am only experiencing pain/electrical jabs if I press my trigger point so I try not to do that! The doubling of my med RX seems to have helped for now. I liked the description Sarah C. gave for the feeling that one was having their teeth pulled out with pliers…yeah, that’s it! Welcome aboard Sarah C.!!!

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QUOTE: “When it feels like your lymphnodes seem to swell around your jaw and right under your ear”

I didn’t know anyone else felt this! Lately it seems that all my attacks are starting this way. The moment I feel either one or both of these lymphnodes begin to “feel” like they’re swelling up I know an attack is coming on.

I haven’t yet found this location in the TN descriptions anywhere - has anyone else found a reference to the lymphnodes or suffer pain in this area besides Sarah C & I?

Cheers ~ Kerry xx
PS: Welcome aboard Sarah C!! :slight_smile:

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Oh and when I mentioned this to both my GP and my Neurologist about my lymphnodes (I called them glands) and my ear - the GP looked curious, and the Neuro said “Oh, how interesting” and wrote it down in my file without saying another word…

Cheers again ~ Kerry xx

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I have noticed my lymph nodes/glands larger a while back. I have had this episode of pain since Oct. I wished I could remember when I noticed the swelling but I can’t. I know they are somewhat swollen now.

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OK - the lymphnodes thing happened to me during my first lengthy2 month attack period - I thought I had an infection (tooth abscess - I was new to TN and very much in denial), but my blood counts were all fine. So glad to hear a that a few of us have had this symptom as it doesn’t seem to exist in writing anywhere.

My theory behind the swelling (for what this is worth!!!) is that your immune system gets a mssage that your jaw is under attack (from the pain messages) and sends out the army - which causes an increase in the cell population in your lymphnodes (the filtering system!) - hence swollen glands!!

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thats what I was going to say Lizzie lol~~

Your nerves are sending short circuits to the different areas in your face so your immune system sees a threat and attacks it~~unluckily for me I happen to have a cavity on the right lower side now so all it takes is a crumb of food to get near it and the whole side of my face swells up like a balloon and I get a double chin lol
but the tooth doesnt hurt lol…and also the constant pain I tend to have in my jaw/ear area is always tripled in ouchies when my lymphnodes/glands start swelling so I think that the reason my ears hurt so bad. My trigger pain area tends to be right at the bottom of my ear where the lymphnode is in between the ear and ur jawbone…I can push it and give myself a lil buzz of pain across my jaw and lips its funny lol

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perfect pictures to post :slight_smile: thanks Ro

And now thats shes posted them it gives everyone a view to easily see why many doctors assume it to be TMJ instead of TN… and also show that the ganglion nerve bundle needs to have far more research done on it. It is in all reality as vital to survival as your heart is…so a rise in nerve diseases would lead u to assume that something is aggravating the nerve core…perhaps pesticides we breathe in who knows lol

But Ive noticed I have a new pain starting to randomly “poke” me on the right side of my neck…and as far as I know the trigeminal nerve doesnt have anything to do with the side of a neck so it leads me to believe i have another nerve possibly on the fritz. Which until recently was believed to not be possible (like the doctor who laughed at e when I told him that my forearms had started to tingle alot when I have really bad shock attacks but i was told the 3 trigeminal nerves wouldnt be damaged if I was having numbing sensations on my arms and probably had a pinched nerve in my neck…but***** I found a doctor online whos been doing a study of the ganglion and said that its very possible to have more than the 3 trigeminal nerves damaged on one side like ppl think. ( Seemed plausible to me too considering there are a few bi-lateral TN sufferers)

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lol thats kinda what Im getting Maeve a random zap on the side of my neck on in my forewarm and sometimes numb tinglies in my forearm… um…its possible we both have something agitating our nerve cluster in our brains…like a teeny blood clot small enough to keep pumping through the heart… or MS does that too i think D: but Im sure thats not the case :o

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and lol Ro touch what ur nose? or your cheek? My nose itches like crazy or feels like a fly just flew up my nose LOL not a pleasant sensation

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Im starting to learn that the more dehydrated I am the more my face hurts. When my teeth hurtouchlol it hurts to breathe let alone eat or drink anything and I worrry that it will trigger it to hurt more…but Im learning that if I dont hydrate myself the pain gets worse…so perhaps nerves get more pressure on them then? Im not a doctor so I dont know the proper way to explain it but everyone just keep yourselves hydrated :slight_smile:

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lol so… this blog was all but forgotten about by me but seeing as how I seem to have another lengthy attack starting I thought I’d refresh my memory on it since I dont know h0w long it will be until my attack ends…I’m hoping sooner than later as its been ongoing for a few days now.

I went to the hospital last night because the pain was unbearable…and the ER doctor gave me a shot of something I’ve never taken before. O.O It was called Toradol or Tordol Im not sure which…BUT OMG IT HELPED SO MUCH!!! Like the pain was still there but it was bearable…it made me sleepy for a little while but it was such a relief I almost cried just to not be crying anymore lol. I think its a headache pain medication or something like that…Im not sure as googling it only brought up a few sites about headaches.

It did state that you should be cautious taking it with Tegretol…and it did make me have a mild stomachache and my kidney hurt a little bit (also found in the side effects info online for people with past kidney problems to be wary of taking it) but it was such a relief regardless of the side effects…I went from being curled up in a ball saying “I just want to die make it stop” to the doctor to saying “ahhh oh my god thank you so much”