I am discouraged. I am recovering slowly from a recent surgery. My TN seems to want more Lyrica to maintain. Just when the dosage was down, and my head not spinning as much, I have had more incidents than usual. It is tough to maintain them, so my dosage is back up. This is no way to live life. Not sure what way to go from here. I feel like a complete failure in about every area of my life now. I hate this............Ok vent over ;-) Thanks for "listening"~~
((( hugs ))) I can relate , it’s hard not to be discouraged when “things” aren’t going the way we’d hoped, but you are recovering from surgery so I am guessing that the stress on your body is more than likely causing your TN pain to flare…I’m not a doctor but as someone who understands your vent, I would say try really hard to be gentle with yourself and your expectations. You’re absolutely right this IS no way to live, BUT one foot in front of the other we must! I am very discouraged with the way my TN is progressing , I’m unsure of what the future holds and sooooo darn tired of this pain BUT I’m grasping onto hope that “this too shall pass” I refuse to believe that this is my life for always.
Know that you’re not alone, I hope you start to feel better and your healing from surgery speeds up . Once you’re feeling more yourself you’ll be better able to decide what comes next! Thinking of you , keep in touch.
Hi Shepherdgirl, First of all anybody who battles TN is NOT a failure!! We are the strongest people alive and as long as we fight we haven’t lost!! Hard to say at times when it seems like ur whole world is crumbling around us because of TN. But, u can do this!! And we r all here fighting with u tonight!! Instead of an increased dose of lyrica maybe it is time to add a second med along with it. A great combo for me has been a anti seizure med (trileptal) with a muscle relaxer( baclofen) and a antidepressant (cymbalta). The combo of meds work together for better coverage!! Stay Strong!! ((HUGS))
The effects meds had on my life drove me to MVD within one year. TN doesn't go away -- can go into remission - but when you feel better - do some more asking and some research on what is best for you long term
Keep Posting!
Sounds like so many of us are struggling right now. I have to say that in 11 years of doing massage therapy, the pain levels in clients have been consistently worse this last year...not sure why, my husband blames the solar flares!
I've been more discouraged this last month, too. End of July I had to have a broken tooth pulled on my affected side and my face has not been happy since. The first week after was the worse. Plus I had to travel for a four-day workshop in a freezing room so I hugged that side of my face a lot with my hand to help keep it warm and struggled through the days.
I'm on a very low dosage of Tegretol...prescribed 200mg twice a day but I cut the pills in half and I still have trouble with the meds affecting me (I'm such a lightweight with meds). I supplement with ibuprofen so I can still function but the pain has been more bothersome and I've been so weepy, it's ridiculous! If someone I know well asks how I am, I burst into tears.
I used to take Propranolol for intention tremors...haven't need it for about three years but tremors are also back on a regular basis. I take it as a sign that I need to adjust my schedule until I have more energy so I've been limiting my work schedule to three appoinments a day in my massage office. Try to ride out the storm...and grateful I can work and function even if limited.
It did occur to me that it is now hayfever season so I may be experiencing additional pressure in my face due to that so took an allergy pill last night to see if that helps. In the last month my left side has also become sensitive to pressure when I try to sleep on that side. I have to create a space in my pillow so I don't have pressure on my ear.
Thanks for listening... = )
Thank you all for the encouragement. Just knowing that I am not alone is a big support. Life is ok. My recovery from my recent surgery has hit some snags, but this too shall pass. Every day begins new. I keep telling myself, "I choose to be happy." It is amazing on what a difference it makes to "quiet the voices inside my head." One step at a time. blessings~~
I am just curious, what surgery did you have? I had MVD on 9/5 and I am still having facial pain, can anyone relate?
I am so sorry that you are in such a pain filled place. This is a hard diagnosis to bear. I too often feel overwhelmed with all the changes I have had to make in order to deal with the pian and function with the meds. This is your new reality and I hope you will find something to give you peace, relief and even joy. Stay strong, you are not in this alone. We TN sufferers are all standing with you.
Sorry things are not going well for you at the moment, it is so difficult to be in pain all the time.
You are not a failure because you have tn and all the struggles that come with dealing with this horror on a daily basis.
I now celebrate tiny achievements, things I used to take take for granted. Be kind to yourself, you deserve good things.
I wish I could make this better for you.
Love and hugs
Trish
Pigle2u,
I can relate. My MVD did not help my TN2 pain. It was very disappointing and very physically painful. You still have a lot of healing to do, so there still is a good chance the MVD will help. I am hoping it worked for you.
Don
piglet2u said:
I am just curious, what surgery did you have? I had MVD on 9/5 and I am still having facial pain, can anyone relate?
Just to clarify, my recent surgery wasn't to do with my TN. I found though that because the hospital didn't know how to deal with TN as it became worse nothing was done. the pain meds they gave me for the actual surgery kicked in and put me to sleep. The TN surgery I had in 2010 & 2011 was the stereotactic radio surgery at UCLA. The success has been really good. The recent stress of my surgery seems ot have kicked my TN into full semi gear. I am sorry for any confusion. Trish you said it very well for me "celebrate the little things". Mimi and Lisa26 thanks for your thoughts. KC I will!! You all are great!!! blessings to all~~