I’m looking for some advise from people suffering with this for some time. I have been pain free thankfully for nearly two months. While I still suffer with fatigue, thankfully only the odd zap, tingle and numbness lately.
My query is, how long does it take to adapt to the fear a person suddenly acquires with TN or is it just me?
I find sometimes, not constantly as I was when this flare first ended, that I will hesitate when about to brush my teeth, brush my hair, consider if it’s two windy to venture out ( has been a horrible windy winter after all!) or something is two hard to eat. Do I chance a layer of make up and is that visit to the dentist really worth it for what could happen.
The fear of missing a dose of meds, the fear of changing meds, the fear of reducing meds once a bad attack starts to subside. The fear of staying on a max dose of meds incase your body adapts and they stop working.
The fear that the attack will never end and you’ll never not know pain again or when it does end the fear that it will return, quicker, worse than the last.
It’s a lot of fear!!!
Of course I know it’s ridiculous to live this way but we all know that the pain TN causes is no joke and leaves a lasting affect even when not present. The thoughts of it make me wince. Does one ever adapt?
I don't think so. I have just been through a two-week bout. Too much time off from work. Everyone asking me at church, "Are you gonna be okay?" I just say, "I feel good today, finally." I try to tell myself, "Maybe it's something you ate that triggered this round. So don't eat that regularly anymore, just once in awhile." It's been 18 months since this started for me. I'm so sick of it ... I'm such a go-getter. I love to work, I love to sing, I love to do things with my 16-year-old son. Fear or not, I'm not gonna give up. I refuse to live in fear of this beast.
It’s not ridiculous. Two and a half years straight this time around and the fear does not leave. For me Tn is always changing so I never know what to expect next. There is a certain level of acceptance that comes with time and less anxiety about what is happening. Mostly I can remain strong and focused on other things but we all have our moments with this.
How long u suffer is da key. If u suffer long enough like me(7 years Geniculate Neuralgia)it’ll takes time cuase 7 years of fear can be traumatic, it may be forgoten if da pain not trigerring anymore. After MVD 2015 i’ve been pain free, up till now Feb’2016 da pain strikes again. Even though not as painfull before my MVD. Now i become stress and anxiety fearing da pain would be worsen again…
Oh what i’m still curious, what activity or diet may cause neuralgia??
I’m a programer and interracting with PC alots, that may cause/related to eye muscle strain. Ahh and i ate lots of white pepper not long before ma first GN occured. I’ve been stay away from pepper after ma first GN attack. Up till now not long i ate lots off black pepper and coincidently da pain strikes again. Could pepper be da culprit or maybe my activity cause it. This da doctor cannot say, how can i prevent it if i dun’t know what cause it…
I am of Asian descent and found that Tegretol (Carbanmezapine) is not a drug I am able to take. I started taking Tegretol in mid Dec. 2015 100mg twice a day and had to stop because I had a nasty allergic skin reaction. I also found out that dosage did not quite take the pain away. Was unsure what had caused the reaction at that time. After being off work for almost a month I took 200mg Tegretol just before bedtime (since I had heard that 100mg Tegretol was not enough to take the pain away) Taking 200mg Tegretol just before bedtime took the pain away completely for almost 48 hours. Though this is great I found that it made me have the allergic reaction the next day morning (swollen lips, vomitting, head-ache), so I stopped it right away. I wish this med. did not have such a horrific side-effect, because it really did take the pain away. When I read up on allergic reactions to this med it says that people of Asian descent cuold have life-threatening allergic reaction. So after suffering for over 2 years with TN, I am debating on getting the MVD surgery. Anybody else (of Asian descent) tried any other drugs that did not cause any allergic reactions AND took the pain away? Any info would be much appreciated.
Indra said:
How long u suffer is da key. If u suffer long enough like me(7 years Geniculate Neuralgia)it'll takes time cuase 7 years of fear can be traumatic, it may be forgoten if da pain not trigerring anymore. After MVD 2015 i've been pain free, up till now Feb'2016 da pain strikes again. Even though not as painfull before my MVD. Now i become stress and anxiety fearing da pain would be worsen again...
I am so glad I found this forum. I have been so anxious since being diagnosed this past summer. My stomach always in a knoft! The unknown is terrible. I am not on any meds and trying acupuncture to help. Wondering if I should have meds on hand just in case but hate the thought. My acupuncturist has experience treating TN so I have confidence in her. Thanks again to all the members who have shared their experiences with everyone.
I am 25, and have ATN, it doesn't quite have the same fear response because it NEVER stops, but I live in terror of breakthrough pain and the medications losing effect. I quit my job, moved in with my parents, and changed just about every aspect of my life. Now i am trying to build it back up and I am SO scared I wont be able to. I am 16 months into life post ATN. I wish you all the best, and I hope your remission is long!
I two was 25 when diagnosed, 26 now. I also lost my job and car due to it and can’t look for other employment right now due to other health issues. It’s been a year of absolute torture and I think the hardest part was when I found myself grieving my old life, badly and didn’t even realise that’s what was going on until months after.
I think I suffer both ATN and TN because like that the pain NEVER stops when I am in a flare up. It is constantly there and then throw these sharper more excruciating pains on top. When I got my first attack it last about 5 to 6 weeks before fully going away. My GP told me because of my age he didn’t think I’d get another one for years. Four months later I was back to him. I spent a week in hospital been treated for an infected gallbladder, managed to come right and go home and found myself in a and e only two weeks later with TN, had a bad reaction to tegratol, then they found something wrong with my blood work and had to stay another week having tests done. Mri was clear tho thank god. I think when I am stressed and my body is just fighting with itself is causes the TN to flare up. Thankfully I managed to hold onto my rented accommodation because moving home wasn’t really an option but both my parents and brother live a stones throw away so I have great support.
Do you mind me asking how your friendships stand now? I found the ones I thought I could really rely on ran for the hills.
I hope your medication stays strong!! 
I two feared breakthrough and was on the max dose of lyrica and amitriptyline.
Suzi.
itwouldntbemakebelieve said:
I am 25, and have ATN, it doesn’t quite have the same fear response because it NEVER stops, but I live in terror of breakthrough pain and the medications losing effect. I quit my job, moved in with my parents, and changed just about every aspect of my life. Now i am trying to build it back up and I am SO scared I wont be able to. I am 16 months into life post ATN. I wish you all the best, and I hope your remission is long!
Hi Suzi,
Im 27, had my first tinglings at 14, was diagnosed at 18 - but my attacks were somewhat managable up until this year. I am awake now after a full night of waking up almost every hour or two with attacks. I used to be able to sleep and that was some relief, but now I'm not even able to sleep.
Each day seems slightly different, so I don't know what to expect. What new horrible form will it have taken today? It is very scary.
Be kind to yourself. it sounds stupid and cheesy but whether or not the people around us know it, we are warriors. Getting out of bed and getting dressed is a battle. For me and I know many of us, bathing and putting on makeup can be torture. Trying to be positive and happy so the people who love us will be in less distress, that is a battle as well.
Every day we fight something horrific and every time we can smile and crack a joke after an attack with tears streaming down our faces, that is a victory. Remember you are so so brave.
I also have started meditating for 15 minutes a day in a quiet room while Im not having an attack and I think it's helping, not necessarily with the TN but just with my anxiety and despair. I feel more in control of my own mind.
Anyways, my heart goes out to you. I hope you find remission soon.
Lia
Friendships are strained and stressful.
It kinda ruined my relationship with my roommate when it started. She had to listen to me crying, both to myself and on the phone with my parents every single night. She never said anything, but I am sure she was startled awake, like I was, by the sound of my screaming myself awake when the Vicodin and other painkillers (I took a LOT of Ibuprofen and Vicodin together when I was at my worst and didn't have a diagnosis.) wore off. I started having major anxiety attacks that were disruptive and out of control, and then there were the months of memory loss, and vertigo and depression/suicidal thoughts that came as a side effect of the different medications I tried. None of that was helpful.
Outside of my roommate, co-workers, aka people forced to interact with me my social life dropped to a few infrequent visits by women from church who tried to sell me on Essential Oils that would "cure me!" I knew they were trying to be helpful, but I think for the rest of my life my gut reaction to the words "Essential Oils" will be to strangle the person who said it.
I had a few long distance friends who I stayed pretty stable with, but it was easier with them, because they didn't have to see the worst of it. I found a few souls on Facebook who were suffering from their own struggles with depression, and other health things. We were all awake at 3am often and I had some very helpful late night or all night messaging chats. I am still much closer to those people even though previously I may have only had a class with them in High school.
Now, after my move, with better pain control, I am making a few good friends. But most people keep a bit of a distance. Sometimes I prefer this, because dealing with people tires me out extra fast now. what I find most frustrating is dating, I wasn't good at it before, and now I mostly get two types of responses, guys who run for the hills because my problems are intimidating, or condescending white knight types who don't treat me like a human being, they just want to take care of me, with out actually finding out what I like or need.
Hi Suzi, What meds are you on? And at what dosage? Tegretol gave me a bad allergic reaction and am skeptical about trying any more meds.
Hi DA
I am currently on nothing. I am suppose to be on a low dose of lyrica as a preventative between flares but I weaned completely off while pain free because of weight gain. I want to say however that if the pain re surfaces I will be immediately going back on lyrica. I’ll take the weight gain over the pain anyway.
For a finish I was on 600 mg of lyrica and 50 mg of amitriptyline by night.
I two had a severe allergic reaction to tegratol, funnily enough not the first time. I took tegratol for my first flare that lasted about 5 weeks. While they made me very stupid and sleepy I had no major reaction. The second flare started and I stated taking tegratol again. I had facial swelling, temperature, hallucinations and a valiscular reaction.
I was started on lyrica in hospital after that on a minimum dose and upped to the highest over time, amitriptyline was added by night to help me sleep because the pain was worse for me lying down. It took some time to adjust to them but after a few weeks could function for at least half the day and the pain was minimal on this mix for me. Aside from weight gain I noticed when the flare ended and I started to reduce my meds that my head had gone to a dark place that I didn’t realise while in the ‘fog’. I don’t think the meds solely contributed to this, I lost a lot in the space of a few weeks thanks to TN and like I said above I was grieving the life I once had without realising it. I will take this mix of meds again when the next flare up comes but I’ll be more cautious of my mental well being next time around to judge if it was the meds or the situation as a whole.
To be honest I struggle to understand people that say they can’t take the meds because they can’t function properly on them. If a person is in pain, take the meds!!! Of course I understand people want to try hold down jobs and keep their families going but I could physically not take them if I really needed them.
I hope you find something that works for you and your pain management, you will never know until you try and I’m sure since you had a bad reaction the last time that both you and your doctors will be very aware and pay a lot of heed to if the new ones will do the same or not. Have you tried anything else?
Suzi
>DA said:
Hi Suzi, What meds are you on? And at what dosage? Tegretol gave me a bad allergic reaction and am skeptical about trying any more meds.
I experienced exactly the same as you after managing ok for 10 years. When my bad flare up happened in 2014 I also couldn't sleep. It was the worst experience ever. But that passed, it took about 4-5 months. Fast forward to today and I sleep just fine.
I also meditate, may not help directly with the pain but will help you in every other way.
Lia Sampson said:
Hi Suzi,
Im 27, had my first tinglings at 14, was diagnosed at 18 - but my attacks were somewhat managable up until this year. I am awake now after a full night of waking up almost every hour or two with attacks. I used to be able to sleep and that was some relief, but now I'm not even able to sleep.
Each day seems slightly different, so I don't know what to expect. What new horrible form will it have taken today? It is very scary.
Be kind to yourself. it sounds stupid and cheesy but whether or not the people around us know it, we are warriors. Getting out of bed and getting dressed is a battle. For me and I know many of us, bathing and putting on makeup can be torture. Trying to be positive and happy so the people who love us will be in less distress, that is a battle as well.
Every day we fight something horrific and every time we can smile and crack a joke after an attack with tears streaming down our faces, that is a victory. Remember you are so so brave.
I also have started meditating for 15 minutes a day in a quiet room while Im not having an attack and I think it's helping, not necessarily with the TN but just with my anxiety and despair. I feel more in control of my own mind.
Anyways, my heart goes out to you. I hope you find remission soon.
Lia