FallenAngel27 · 13/08/2021 14:52
Might be a long shot but, is there any other mums struggling with the pain of Trigeminal Neuralgia? I've been suffering for the past 4 years and nothing seems to be working for me. I'm so fed up it's making me feel really low :( I don't want to be feeling like this with my little one around. Just wondering if anyone has any advice or help. I just need a friend to rant with who actually understands my pain
toodizzyizzy · 13/08/2021 21:31
Hi, I didn't want to read your thread and not post given how difficult you situation sounds I have chronic nerve pain in my arm, it's been relentless and incredibly isolating. The lows when no treatment seems to even touch the agony are so hard, it's an isolating place to be. I know the guilt of being a parent too, thankfully mine are teens now. I never would've coped had they been younger being so drugged up. Feel free to rant, as for advice I'm not sure I have any outside of the standard ones people tend to say that don't really help much...Do you have any treatment options? I can at least have surgery to hopefully stop the constant burning/ crushing sensations down my arm. What medication do you take?
FallenAngel27 · 13/08/2021 21:46
Hey. I'm currently taking 1200mg 3x daily of gabapentin but, it's doesn't even scratch the pain. I've tried every pain relief the quacks have thrown at me and nothing works. Even morphine. I've tried so hard to speak to my family/friends and none of them can't even begin to understand how much pain this causes. It's horrible. I currently have a 18 month old and it's so hard. Not being able to cuddle him and play like other parents can :( I genuinely do feel so isolated from everyone. I don't think it helps that I'm on waiting lists for this, that and all the other. Being bounced between doctors and specialists. No one seems to be helpful to me at all :(
toodizzyizzy · 13/08/2021 23:06
I take pregabalin, which I believe is another name for gabapentin (?) I don't think helps me either, but I'm too scared to come off it now...It's a horrible drug, it makes me feel so slow and jittery. Codeine helps me during the day a bit, it doesn't stop the pain, it just helps me to detach a little. Heat bags help a little too. I've started taking morphine at night, but it seems to have little effect...Do you feel people just think you must be ok because you take medication? I don't know why, but I can't get people to understand that it doesn't work very well - it drives me crazy! Do you have any triggers that aggravate your pain? I don't like to be touched either on bad days and the cold really gets to me. Please feel free to rant away, even if I don't have solutions that help, I will listen and believe what you say xx
FallenAngel27 · 14/08/2021 09:36
Pregabalin is part of the gabapentin family, neither really do much help to even ease it for me. I'm just so sick of ringing the quacks and telling them that it doesn't work, they reply with either nothing I can do or speak to neurology, I ring neurology, they say the same nothing we can do speak to neurosurgery, they once again say the same, nothing we can do. Speak to your doctor. I'm being passed around in a bloody circle and not getting anywhere with it. As for the family/friends side of things I just want to scream at them all until I go blue in the face. I try to explain how I feel or what I'm going through and not a single one of them understand how it genuinely feels. They say "I don't feel it so, I don't know" or "I can't imagine that pain" all I want from them is just a bit of support and comfort from them. I really do feel so pushed put and isolated that I just can't speak to any of them anymore :( I can't even speak to friends about it. I did find a friend who had the same condition but, he went for all his tests and found out it wasn't actually TN and his went away :/ just think the people who suffer with this are the only ones I can speak to as you all genuinely understand the pain and emotions you go through with it. As for triggers I have too many to even list down :( I can't brush my teeth I have to use mouth wash just to clean them (I feel a right tramp for it) I can't bush my hair at all. I can't even touch my face because of it. Most foods are triggers so, I hardly eat anything. The weather reacts with it too. I'm not trying to make out that I'm worse then everyone else. I'm not that kind of person but, right now I really am having a hard time with it all and yet, where is my friends and family to help me? Nowhere :(
toodizzyizzy · 14/08/2021 11:59
You're right to be upset and frustrated, your condition is having a massive impact on your life and you are missing emotional support. That's hurtful that the one contact you had who seemed to understand has disappeared. I honestly don't get some people, so many people seem to be incapable of basic empathy.
I've only very recently been given the option for surgery, before that it just felt endless and I was in the depths of despair. I've been where your are and it's lonely. I relate about not being able to clean teeth and brush you hair, these are such basic things. I was too embarrassed to tell anyone about not being able to clean my teeth properly and I had my hair cut really short as I couldn't even wash my hair properly - even now it's a challenge as I can't open the bottles properly. I hate it.
I really hope someone can post soon who knows your specific condition, you need that breakthrough moment when you get the right consultant or the right test - the pandemic makes everything harder as each new referral takes longer and longer.
One thing I thought about last night that helped me a little is the drug nortriptyline, it tools ages to have any effect but I can feel my body is a little more relaxed and I think it has helped with the depression. I don't understand why pregabalin/gabapentin is prescribed as it doesn't seem to work very well...
I hope you have a better day today 💐
Swifey40 · 14/08/2021 12:38
Hello there, my nerve pain is in my stomach (endo) and my head (terrible, debilitating migraines)so different from yours, but I understand, I have two boys too, now 9 and 6, and I have the terrible guilt as well.
Have you been put under a pain clinic at your hospital? Xx
FallenAngel27 · 14/08/2021 17:12
I haven't. Atm I'm currently been put under neurosurgery but, with two different ones. They taking forever though to sort something for me. They can't seem to control the pain with any sort of meds either. It really is awful being like this around them
Swifey40 · 14/08/2021 19:53
I really feel for you 💔 😞 I know how debilitating and depressing it can be.
I think you need to call your gp on Monday and ask to be referred, as an urgent case, to a pain clinic at your local hospital. You need to see a Dr whose speciality is pain.
Good luck. Xx
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