How can I go on? Today is just indescribable… Saw my doctor, who told me to take more pills… Think she’s forgotten how many I take already???
I’m so sick of even more pills, that only make my head more fuzzy, make me unsteady on my feet, make my mind totally confused, and she tells me to take MORE.
I realised today that, that’s it from now on, you just take more and more pills…
There’s no operation that will help ( I’ve had my MVD) it didn’t work, there’s no medication that keeps the terrible searing pains away, not for long anyway…where do I go from here?
I’m so tired, I don’t want to do tomorrow, I sit here with tears running down my face, because of the pain, I know many of you are doing the same tonight, and I know you understand, I’ll be better tomorrow? Just wanted/needed to tell someone.
Night night all x
Hi Anne,
Huge ((( hugs )) and love, first of all…
Gosh, I soooo understand, as you know I’m in the same boat of “misery” actually Friday all day, I was struggling with these very same emotions/feelings…
Pain is exhausting.
The relentless struggle wears down even the most positive among us.
It’s such a foreign thing for me to feel such despair, but I feel it.
As do so many of us here…
I’m always searching for ways to cope and get through each moment let alone each day.
Every night lying in bed after saying goodnight to my husband I always say out loud “tomorrow’s going to be a good day” 9.5/10 times it isn’t.
Its very discouraging.
In regards to pills, through the last 3,years, Ive learned that more isn’t better. In fact it can be worse. The side effects increase, and if I were to take more than I already do, I would be in bed all day…STILL in pain.
So I only take 2 medications ( both anticonvulsants) they work only to a certain extent as my TN became refractory ( unmanageable) We know this as we’ve tried almost every med alone and in combination as well as an MVD which successfully removed 2 arteries and a large vein.
No further surgical treatments are recommended …as you know I’m in the beginning phases of trying Botox. My 2nd treatment is in March. ( treatments are every 3 mths) still too soon to comment, I can say that I had 5 good days in December and 3 in January. If this doesn’t positively affect my TN …well I don’t think there’s anything left to try…until such time a new medication, or treatment or holistic method is uncovered .
I really think it’s imperative that we share with each other in these times of struggle, it can be so isolating, and sometimes for me, just knowing someone else is going through the same horrible thing makes me feel less alone. Which can be like a life line in times of pain crisis and overwhelming emotions.
This weekend, I pulled out some self help books, I went online and read blogs of others suffering with chronic illness, i googled positive quotes, everything I could read to “remember” my strength when I felt and feel so weak in spirit.
Here’s a link to an author I found two years ago, I stumbled upon her book “how to be sick” and although she doesn’t have TN, her life mimics ours in how her chronic illness has changed things. The link is to her blog for Psychology Today magazine…I’ve read every blog and found it helpful. I hope you might as well.
https://www.psychologytoday.com/experts/toni-bernhard-jd
I feel like I’ve just gone on and on about nothing…ugh, sigh. Anne I’m sorry my brain is mush. Please know I’m thinking of you and hoping that you experience a break in the pain and that some beams of light, lighten your road and allow you to feel some joy.
Mimi xx
anne-I am not able to give details but I want you to know that I have had terrible pain with type1 and 2 tn after a dentist put such heavy pressure on my jaw and pulled it out of place and tore cartilage-I started homeopathy about 2 years ago and it nas helped so much and no side effects-you will have to search online-some places have online or call in pharmacists. I have had this horrible problem for 23 yrs-I take homeopathics for the nerve pain and mirgraine and sinus problem and these work well for me-they pretty much take care of it. I hope you find relief soon!!