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Anyone else with TN or IIH?

Feb 12, 2017 12:44 PM

Hi im new here..just started this 2 days ago. Im 26 years old and have been chronically ill most of my life.

I have a number of chronic illnesses (see my profile lol)...but was wondering if anyone here has Trigeminal Neuralgia or Idiopathic Intracranial Hypertension(also known as Pseudotumor Cerebri)?
If so, how are things going for you? What treatments are you undergoing? Do you also have other chronic illnesses like i do?

Feb 12, 2017 2:08 PM

Hi AmeliaStar welcome to the community. We're like a big family here. We are located all over the world so come on here in different time zones. Sezzy in the UK has Trigeminal Neuralgia in her face. She'll be on here eventually.

Feb 12, 2017 5:31 PM

Hi AmeliaStar and welcome to the crazy family 😉 sometimes you need a little craziness to get you thro the day!!

As Animallover2 has said yes I battle trigeminal neuralgia in all 3 branches of the trigeminal nerve in the left side of my face.....eye, ear and jaw....I also have TMJ in the same side, tinitus in both but mainly the left side, vertigo on and off....on most of the year and off very rarely atm! And I also have PTSD 😨 ....I've also been referred to rhaumatology due to pain in my knees, hips, arms, neck and shoulders and raised inflammatory markers but RA was clear....some of the neck and shoulders pain is due to being tense because of the neuralgia pain and I seem to be having pain in my right jaw as well but again probably because of the neuralgia.

OK right yes I live in the UK and the doctors think my trigeminal neuralgia was triggered because I went thro a very stressful period when the pain started. I have been in hospital with it twice and another time because the doctors thought it was a great idea to stop I think it was 5 meds dead....no weening of them then send me home....I was back in hospital and needed 3 bags of saline within 4 or 5 hours, sorry the time frame is a bit blurry.
It was the second time I was in hospital because of the pain that they found the main combination for me was amitriptyline 110mg with 30mg zomorph at night and 20mg in the morning. I've been on many antidepressants and duloxetine seems to be keeping me just about floating maybe I'm not sure anymore.
I've tried all the normal meds for nerve pain....carbamezapine, gabapentine, pregabline and there's another one but I can't remember it's name only that ir began with an O. None of them worked for me in fact they made me worse! They made me soo tired that it any benefit was lost.....if I'm too tired the pain is worse which means my anxiety is worse which means my mood is lower which means I'm exhausted and can't function.

Have you found anything that has helped you?

Feb 12, 2017 6:11 PM

Hi Sezzy! Thanks for the welcome!
Seems you're having as rough as a go of it as i am. I have TN in all 3 branches. Started on the right side but then soon moved to the left. Now its mainly the left but occasionally the right flares which is lovely. Ive troed a number of things including gabapentin and tegretol(carbamazapine). The biggest succes ive had is with Lamictal(generic name is Lamotrigine). For the longest time it pretty much squashed it but of course after about 6 months it wasnt enough... Recently had to add Trileptal(oxcarbazepine is generic name) which is a sister to Tegretol, because the Lamictal was no longer enough. I also get botox for my chronic daily migraines nd believe it or not it also helps the TN. Im also on Baclofen and Zanaflex that pull double or triple duty for several of my conditions but they do help a bit with the TN as well.
Despite all of this i still get breakthroughs. Of course i know the time will come when nothing helps and no relief is available and that terrifies me. Ive been in the ERmore times than i can count for it. I also gained pretty severe anxiety when this came on because the pain is so bad. Im now on round the clock anxiety meds plus extra for when im bad or have an anxiety attack. Sometimes the anxiety meds help me cope a bit through an attack too.

They still dont know what has caused mine. I suspect there may be something like MS going on simply because weve discovered i have at least 2 other systems in my body that have unexplainable nerve damage,one of which is characteristic of MS. Of course im 26 so diagnosis is difficult lol.

Ive found that the TN most definitely makes my neck and shoulder spasms and pain worse, sometimes even causes it. Unfortunately its all connected lol.

As for things that help other than meds, i find several coping mechanisms both to help the pain and to try to avoid it. I eat using small utensils so i dont have to open my mouth wide. I dont eat crunchy things and when things are bad i exist on liquids(so things like ensure are great...i eat baby food too). Hot(as hot as i can stand it) wet cloths on the effected side can help even though its not for long. Oragel on my gums helps if its flaring in that area. When im actually able to brush my teeth i use a baby tooth brush. Sometimes using a lidocaine cream on my face can help.
In the beginning cold packs helped but lately heat has been better.

This disease has taken so much from me and honestly i understand why they call it the suicide disease and why they say most people who have it commit suicide within the first 2 years. This disease is worse than anything ive ever experienced and ive experienced just about everything.

Have you had any issues with dentists? Do you have any tips for dealing with them? Right now some of my teeth are bad but going to the dentist is.......horrible. The last time i went i almost passed out from an anxiety attack after the dr set off a small flare. Doesnt help ive always had a severe phobia of dentists lol.

Anyway ill stop rambling.....thank you for taking the time to reach out and answer my post!

Feb 13, 2017 2:18 AM

There is a lot I try to do to help and I had written out a long reply but it disappeared and I haven't had a good sleep as per usual.
I'm going to have breakfast then I'll see if I can get this on my laptop and write a proper reply in 2 or 3 posts so please bear with me. I'm just waiting for my meds to kick in atm

Feb 13, 2017 3:36 AM

Oxcarbazepine is the one I couldn't remember, my neuapathic pain clinic said when they put me on it back in sep 2015 that it is a med less known but one that is used to effectively treat TN but unfortunately for me it didn't work because if made me soo tired that it made the pain worse....I was getting to the point I couldn't drive if for longer than 30 minutes! So I stopped it after 3 weeks. My pain clinic nurse says I have a sensitivity to high doses and certain meds and once that sensitivities are triggered I can't use that med anymore!

Feb 13, 2017 7:45 AM

I keep writing replies and forgetting to post then they disappear!!!! Lol

I forget to say the I also use a lidocaine 5% plaster on my cheek and jawline. I wear it for 12 hours a day if the pain is soo bad. You wear it 12 hours and can't put the next one on for 12 hours.
It numbs my cheek to make the rest of the pain a little more bearable. My anxiety does get worse if I have to go out because people do stare and I've had people ask what's happened. Anyone who knows me now just ignores the plaster and act normal around me altho I can see their worry for me in their eyes.
I also take prochlorperazine for my vertigo.

I now also take various vitamins and minerals.....
I take magnesium supplements as it's meant to help with the normal function of the nerves and help with nerve pain, helps fight fatigue but mostly because it helps relax your muscles and help with muscle twitches (like restless leg syndrome but I get twitches in my arms and sides as well). It took about 6 weeks before I noticed the muscle twitches weren't as severe or as frequent.
I also use Epsom bath salts, if I'm able I will put 1-2 cups in a hot bath and soak for at least 20 minutes making sure my shoulders and neck are in the water as well to feel the benefit. If I don't feel able to be getting in and out of the bath, I soak my feet in a large bowl of hot water with a cup of Epsom bath salts and I get one of my kids to spray my neck and shoulders with a magnesium spray and ask them to massage it in but the don't like the feel of it so I normally just let the spray dry.
I've found the mouth gels and lidocaine cream aren't great as they only last bearley 20 minutes and your not meant to use them for another 4 hours....in most things local anaesthetics don't last long with me, if I have to have any work done they gave to keep topping me up with it as it runs out quite quickly until I have the maximum dose then they have to work quick before it completely runs out!!!

I use a vitamin B complex to help with the fatigue again it took a few weeks to notice that at times the fatigue wasn't as bad but it's still high.

My Dr has prescribed vitamin D gel capsules because I'm borderline deficient. Vitamin D helps with the absorption of certain vitamins and minerals plus it's called the sunshine vitamin.....I does help lift your mood a little as well but not as much as the sun can lift your mood but any help is good.

I also take a general multi vitamin and mineral supplement for general wellbeing.

I also take an iron suspension as it's more gentle on my stomach than normal iron supplements, I was borderline anemic but since I've had the implant I've not had a period so my levels are now returning to normal so I'll probably stop taking it when the bottle I have runs out because it still sightly upsets my stomach.

I've found that cold can actually cause a flare but heat is much better. I use a microwave wheatgerm beanbag across my shoulders and neck and my face as well, I think I might look at getting an electric heat pad specifically for shoulders and neck but I've got to save the money for that so I'll make do with my beanbag for now.
I have a tens machine as well which sometimes helps a lot and is a miracle worker but sometimes it can cause more pain so I have to be careful.

I'm quite lucky that my teeth have always been quite healthy (she says touching wood!). I use an electric toothbrush on a sensitive setting but I have to take my evening meds 20 minutes beforehand, brush my teeth then take another painkiller to relieve the pain after. If the pain is manageable I take paracetamol, if it's getting bad then co-codamols or naproxen but if the pain is really bad before I'm meant to brush I just use a decent mouthwash to rinse my mouth with.
I can't eat anything chewy or hard so I normally do meals the are soft. I have porridge for breakfast normally, I make soups, spag bol, cottage pie more soups....I try to use a rainbow of veg and will either put quinoa or dried soya protein in the soups and I also do smoothies where I drink with a straw so the cold doesn't touch my cheek area.

Feb 13, 2017 8:23 AM

This Easter will be my 2 years of having TN. I always have neuralgia pain and TMJ pain overlapping it.
I've never had problems with the dentist, never been afraid of going to them or anything like that. I got my first filling 2 months before my 30th birthday and now have 5. I had my wisdom teeth on the left side out out over 3 years ago under local anesthetic because I was too heavy to have it under general anaesthetic and having them out the pain relief was instantaneous and unbelievable. I had a lot of swelling and they had to hurry up at the end to beat the anaesthetic wearing off but the pain was gone!

The hardest thing I've found is the anxiety mixed from the PTSD and my general anxiety completely crippling. I'm now seeing a mental health nurse who seems to of helped me a bit, she's given me a few real time coping strategies....I've been to CBT counselling and that didn't help, the last one triggered me and made me feel soo much worse than I already felt that I stopped the going.

I'm seeing rhaumatology next month and I'm hoping to have answers to why I'm in soo much pain not only with my TN but with the other joints and muscles but we'll see what's gonna be said when I'm there.

I hope my ramblings have helped you a bit and not bored you too much. I hope your day is pain free and happy xx

Feb 13, 2017 6:53 PM

Amanda good to know im not alone although it sucks you have it! What's your treatment and such like?

Feb 13, 2017 6:57 PM

Sezzy....yea i wish i could supplement my diet like that. Unfortunately i have a condition called gastroparesis which basically means my stomach is paralyzed and doesnt work the way it should. I cant digest things like red meats, veggies, fat, fiber, seeds etc. My 'diet' is low residue meaning little to no fiber or fat. Eating things like steak make me sick. There was already so much i couldnt eat because of that disease that when TN came around ive been left with very little lol.
Today has been a very bad pain day for me. Been up since 3am bc of it. Not good.

Feb 13, 2017 10:42 PM

Oh no AmeliaStar that's really bad, I'm soo sorry. I wish there was something I could say or do to help you thro this, OMG doesn't even cover it.
Would you be able to do the Epsom bath salts? as that's not being digested? It might help with relaxing muscles to help reduce your pain? You do need to soak in a warm/hot bath for at least 20 minutes and then not do anything for at least 2 hours after to get the full benefit from them.
I know how you feel with the pain and tiredness, it's 4am and I've been tossing and turning for at least the last hour before I've given up, taken extra painkillers and come on here while doing some colouring.....anything to try and distract myself (it's not working much atm but ya still got ta try!!!).

I'm not sure what else I can suggest pain wise apart from the Epsom salts and to try and do some light stretches to try and loosen your muscles a bit to help reduce your pain.
Has your dentist, maxifacal consultant or pain clinic given you exercises for your jaw? I've found some of them useful for keeping a fair amount of movement in my jaw....it will hurt to begin with but you've got to persevere with it and little by little you should get more movement in your jaw. As the saying goes....
Like I said it will trigger to begin with but if you don't do the exercises your jaw will start to cease up and it will cause a hell of a lot more pain in your jaw in the future trying to get it moving after its ceased up than what pain you'll get now from trying to keep the movement in your jaw.
I've found the exercises have even helped with the clicking I get in the left joint as well.
I can't find the leaflet I had with the exercises and stretches but if you Google it or ask your doctor or dentist when you next go they should be able to give you a leaflet with it all on.
With regards to seeing your dentist I normally take extra painkillers about 15-20 minutes before my appointment like ibuprofen or naproxen then take another painkiller after the appointment like co-codamols and I try to book an appointment as close to my morning meds as possible especially if I know that I'm going to need to have work done like a filling or just generally if my mouth will be open for a little while. I know it's not going to help your anxiety but maybe if you take your extra anxiety med before going in and taking your muscle relaxer as well might help?
Sorry I was meant to say that in my other replies but forgot!
It's about prevention and pain limitation but you also need to get some of your movement back in your jaw because that will help in the future with pain and it will keep your jaw muscles from ceasing up and having more pain in the future.
Sorry if I'm repeating myself but it's important and the pain you'll have now from doing the exercises will be a hell of a lot less than the pain in the future from your muscles and jaw joints ceasing up then having to do PT to get them moving again.

I.hope your pain eases up so you can get more sleep tonight. Sending you positive vibes and warm healing hugs xx

Feb 15, 2017 12:12 PM

Sorry it took me a bit to respond!
Bad TN pain today too.
I use baths when i can but i cant often because the heat can set off my migraines worse unfortunately.
Haha everything with me is a contradiction. Something thats good for one is bad for the other.
As for exercises/pt etc....Ive gone through lots of it..was even seeing a great chiropractor until insurance wouldnt pay anymore.
At home i also do a lot of self massage where i find a spot that is painful/locked up and either press on it or pinch to put hard pressure on the spot for 10-15 secs and then firmly rub in little circles until the hurt lessens/muscle releases. Normally no more than 10-15secs and repeat the process if need be. That helps a lot.

As for dentist and meds...last time i went i took enough meds to make me loopy before going but unfortunately because my adrenaline/anxiety was so high, it didnt kick in at all....at least not till AFTER the appt! Lol like what was the point?
Anyway...hope today is finding you well!

Feb 15, 2017 1:14 PM

I'm amazed you understood my middle of the night, painsomnia ramblings....some of it I even had to reread 3-4 times to even understand and remember what it was I wrote!!!! Lol

Have you tried a tens machine? I put it just above the pain in my neck and shoulders to disrupt the pain signals so you're not in as much pain in you neck and shoulders (the theory is the same for other areas of pain as well).
If I use the magnesium spray or Epsom bath salts (which can be used warm as well as hot if hot triggers migraines) I've found not to use the tens machine as it feels like it electricutes me.....lol the things we try sometimes in the name of relief!!!!
When my neck and shoulders are soo painful I have to get my 10yr daughter to actually stand on my shoulders either side of my spine and dig her heals in which is really painful but it actually relieves the muscle pain! Or my 14yr son digs his elbow in the same place putting a lot of pressure and does little circles which gives me soooooo much pain but gives me soooooo much more relief at tge same time but it hurts him as well so he doesn't do it too often, unless he wants something....what are you meant to do if you can't bribe your kids into doing things for you......LMAO 😂 I'm a big fan of getting my kids to do things (most times out of necessity) for me altho they tell me it's child labour.....I laugh and tell them they've got it easy but if they really want to find out what child labour is then I'll leave them with grandad for a week or two!!!! Funnily they do what I ask them to do after that comment lol 😂

Sorry I digress a lot!!!

I'm really sorry that there's not much I can do or say for the dentist, the only other thing to suggest is if they've got to do some work then you either need to be sedated or knocked out completely.

I've had TN for nearly 2 years now and even tho I struggle with the pain I've also tried to put it into the perspective that I've had tinitus since I was 16 and after the first couple of years of having it, 65% of the time I can put it as background noise....I've never had a silent moment since it started as it's there constantly so I'm hoping with the aid of pain relief including the lidocaine plaster (you should try it....it numbs my whole cheek area for 12 hours and sometimes I also cut a bit off and put it behind my ear) that I can do the same with the TN pain altho I don't think it'll work as well for TN as it worked for tinitus. Funnily enough I find my tinitus quite soothing at times but then I have lived with it for 21 years tomorrow!!!!

Feb 15, 2017 1:53 PM

Hi I have TN and just registered to this app to track my pain

Feb 20, 2017 8:54 AM

Amelia, sorry it's taken me this long to respond.Dealing with post-op knee pain. Currently on Diamox (yuck) 500 mg 3 times daily, spinal taps when I need them(not shunted or stented). Neurologist still believes I just have plain old migraines or so he tells me. Zonegran 200 mg and Gabapentin 300 mg both at night time. Have been in remission since August of last year.

Feb 20, 2017 9:19 AM

Hi helensmith1982, welcome to the community. Sorry you have TN. You've come to the right place for support.

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