Sunday, 27 November 2016

Too Much Pain

Things have not been great lately. The pain from the now bilateral Trigeminal Neuralgia is completely off the charts. It is so draining and soul destroying. 

As I said in a previous post, I am now off Tegretol, but I was put on Topamax. So now I take a delightful cocktail of Gabapentin, Baclofen, Amitriptyline, Veneflaxine, Topamax and Nepramel. I am on fairly high doses of all the medications which makes functioning like a "normal" person difficult. 

Lately, the pain has taken on a new intensity. I do believe that the cold weather is a major factor. It feels like thousands of tiny red hot knives stabbing me, over and over again. The shocks are also increasing and they literally take my breath away. As well as the Trigeminal Neuralgia pain, I have Migraines also. When these two conditions appear at the same time, it leaves me unable to get out of bed. For the past 5-6 weeks I have had a lot of joint pain. It feels like my joints are on fire, and cramping at the same time. I get frequent pins and needles in my arms, hands, legs and feet. I don't sleep, the pain is just too much. My doctor has a theory, but I want to wait and see if he is right or wrong. 

I am overcome with a lot of guilt. There are days that I am useless, I can hardly take care of myself. I hate being stuck in bed unable to move, I hate having to depend on my family to do things for me, I am 31 years old, not 91! I can't shake the feeling of hopelessness and overwhelming guilt. I feel like I am a burden, a leech, with nothing to add to society. Is this a common feeling among those with a Chronic Pain condition? I try so hard to make something of my life, to do something small each and every day, but light housework such as hoovering and washing dishes is a form of torture. 

Logically I know that it's not my fault, I know that I have limitations, but it doesn't mean I have to like it. I want to be able to spend quality time with my family. I want to go and have a small social life, even if it's meeting a friend for a coffee. I want to go back to work, to start contributing to society once again. 

If I am in so much pain now, and I mean that this pain is becoming too hard to cope with, what will the pain be like in the future? Will I be completely confined to my bed in 12 months? Will my doctors confirm that I have another condition to add to my impressive arsenal? Will I ever get back to work? Will I have a family of my own someday> 

So many questions, and they are impossible to answer. I just want my life back. I don't want another diagnosis, even though I believe that my GP is right about it unfortunately. 

I have to work on my feelings of inadequacy and guilt. Logically I know it's foolish, but I get a pain in my stomach when I look around me and realise just how useless I have become. Nobody has called me a burden, nobody has complained that I can't do much to help out anymore. It doesn't change the way I feel, and I wonder are there many of us out there/? Who else feels this way? How do i overcome it? 


  1. Please try benfotiamine(150 mg x 3 times a day), along with solifenacin ( for Myelin regeneration. I have had some good results for my father with benfotiamine.

  2. I found the topamax gave me severe anxiety!! While the weight loss was welcome, the early 4am wake ups in straight fear. I used it for migraines but had to stop.

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    1. My name is David Hassenpflug I've had TN since 1995 I've been through the drugs it started with tegretal and then I went to trilleptal 6 MLS every 3 hours 24 hrs a day then 5 years ago the pain got horrible I heard about a procedure at ohsu so I figured I would give it a chance I had nothing to loose and since December 11 2015 I am pain free my friends and family are glad to have me back I would love to share the information with you if your interested my email address is hope it helps

  4. Hello, my name is Keri and I also suffer from TN. I'm 46 and have every symptom, mentally, medically and physically, that you do. Like you, I desperately want answers and a medicine that will take it all away! I'm still in the process of finding the right meds for me because some have made me a zombie and just non-functioning. I'm currently on Gabapentin, Baclofen and Tramadol (but still having terrible pain). I use a sleeping pill at night because of insomnia. I've just recently had a series of Neurological testing done because my actions/reaction times/reflexes/memory are HORRIBLE! Like you, I am living is the shell of someone I don't know. I used to be so active, work out, work everyday, throw parties, get together with friends socially...but it's all stopped now. I can't ride in a car for 1 minute without the vibration setting off my pain. My pain gets so intense, that I get nauseous and want to throw up. I wear Sea bands (pressure point bands) on my wrists every day for the nausea and even take meds to control it. I use a portable heating pad in my car for the pain as well. Heat feels good on my head, so I have microwaveable heating pads that I use. I can't go outside in the cold weather without a hat so I've been knitting hats that don't have tight bands that give me pain.
    Like you, I feel useless to my family. I'm lucky if I can get the laundry done. Do you like your Neurologist? Are you happy with him/her? Mine is ok, but I'm seeking out a second opinion to see if maybe there's a better plan for me. But my next step is to seek out a specialist in Boston. I don't want to have the surgery! That's something I'm definitely NOT ready to do yet! Way too scary! But again, maybe there's information about pain management that he can help me with.
    I'm right there with you, living with this day after day. It's a HORRIBLE condition. And it turns your world upside down. No longer knowing this person whose body you're living in. Unfortunately, as I'm trying to cope with, this new me is the new "norm". I DON'T like it but I've got to try to manage this new "Norm". And of course that's easier said than done. I'm still struggling day to day.
    I hope this helps...please feel free to contact me if you want to talk more. I can send you my email. It's such an odd condition and when you try to explain it to people, they just don't get it. They think you just have headaches or migraines. So having someone to talk to about TN (besides your DR) helps!
    Hope your're doing well,

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