Hi, I’m Kathy and was diagnosed with TN after 8 doctors, 6 different diagnoses, 2 trips to the Sanford Pain Clinic, an ENT, a DDS, my neurologist at Stanford (where I had 2 brain surgeries for tumors), my neuroncologist, my general physician and 2 emergency room doctors. It has been so frustrating not only to get a proper diagnosis, but the number of medications I have been put on a pulled off of.
I’m wondering if anyone has the following, as I do:
My pain began 4 1/2 months ago on the left side. Last month I began experiencing the same pain on the right side. My doctors say that TN is rare, and bilaterally especially rare.
I feel so discouraged, but am trying to do the best to stay positive. What tips and tricks have you learned, if any, to ease the pain and comfort my discouragement?
I’m thankful for any thoughts or ideas you can share. I was left paralyzed on my right side after brain surgery and therefore didn’t drive for the 3 years that I went to rehab and lived in a rehabilitation hospital. Last June I finally started driving again! M freedom and independence returned. I am now on a cocktail of medications, including narcotics. Therefore, I have not driven again since this onset.
I need a major injection of “support” and heard this was the place to get it! Once I figure some things out I promise to “give back”!
Kathy I’m sorry to hear of all you are going through! It can’t be easy do you work? I’ve gotten very depressed since I was diagnosed and I know there has to be a better way to deal with all if this! Take time to do things that make you happy alot! It’s most important! Good luck!
Thanks so much for writing. I have been on disability since my second brain surgery and not able to work. I try not to hold too many pity parties, but lately I’m just over come with sadness. At 54 I feel that I’ve lived most of my “good” life. I try to do things that make me happy, but have hard times with all the side effects of the medications. I will try and keep my chin up!
Sjogren's disease-- not the actual disease but monthly infections of salivary glands unknown cause - 3 ENTs/
1 rheumatologist / 1 immunologist / 10 urgent care visits / 1 short hospial stay for potassium deadly low and 8 trips to my doctor all in last 2 years. Sample of infection the next time it comes around will do spit in a cup! If they can't figure it out then - inner lip tiny biopsy OUCH
Osteoarthritis in the neck
Clinical Depression -- HELL ya! not to mention PTSD this last little relapse has caused -
lost a job - new marriage was on the rocks - no self esteem or IQ while on those crappy meds!
Chronic fatigue syndrome-- not officially --but it's like mono has wiped all my energy 75% of the week -- just had a full work up by rheumatologist - no lupus and such - I don't know where to go next!
Selective IGA - Still don't know if that's going to be major or minor in my life
Shortness of breath if jumping up to do something quick or do stairs
And TN 1 - had MVD for TN - surgery 14 months ago and a tiny bit of TN has creeped back!
Im only 50 and feel 80! Two years ago I felt 30!!!
This is a great support place - do you have support in your family/friends?
For breakthru pain LIDOCAINE PATCHES RX - when meds are just not enough - saved my life!
We are 12 in 100,000 people - so yes we are rare and special LOL
If you haven't yet - get the book "Striking Back" by Dr. Ken Casey - wonderful man and surgeon to me
Many many ideas/treatments/ideas/resources - it is our "bible"
Okay you have all that going on and you also had brain surgery??? WOW
Thanks for responding. I hate that anyone else has troubles, but it helps to not feel so alone. I will order the book tomorrow. I’ve looked and there are just so many, glad that you have recommended a good one. Clinical depression is almost always developed in people with rheumatoid arthritis. I am sure I’d be depressed even without the RA…just too much hell.
I will check into the lido patches, have yet to try those…2 great tips already!!!
Kathleen, I am so glad you felt able to write for support. We give it to you and don't expect a return. When we need it, I guess you will give freely. You just seem that nice kind of person.
My TN knowledge is not up to answering your questions. I share some symptoms you do and observe that many here also report the same. I just think that's the way we are made. We seem extra susceptible.
Warm welcome Kathleen,
We have bilateral TN in common…I have classic TN1 on my right which responded well to Tegretol. My left side started as TN2, constant pain in my lower teeth, ice pick in my ear stabbing constantly, it has progressed since a year ago April and has become resistant to meds, and since November I also experience TN1 electric shocks, through my lower teeth as well as into my throat at times.
Because of this progression, I started researching MVD, and am waiting for a date with my neurosurgeon, sometime in the next few months for surgery.
I am currently on 1600mg Tegretol, 60mg Baclofen and 150mg Dilantin. (there have been a few trials and errors with other meds along the way).
My saving grace that offers me a little comfort and helps to take the edge off somewhat is a heating bag I reheat constantly in the microwave.
It does not take away the pain ever, but it helps to soothe throughout long episodes of pain.
I too am pretty much home bound since Nov.2011, I developed severe vertigo initially and went through the gamut of testing only now to discover it could be a side effect from the Tegretol, or perhaps a cross compression of the 5th and 8th nerves. The latter being rare.
Won’t know until I have the MVD and am able to reduce my meds.
I am not allowed to drive initially due to the vertigo, but now more from the meds.
This past year has been a real struggle emotionally with all the lifestyle changes and the constant pain and limitations.
It’s one moment at a time for me …most of the time it’s really hard, but I try really hard to believe that this is not my new normal, I will get back to life again, working, socializing etc…
Hope is so important.
Welcome to your new support forum. I myself am new here as well.
I cannot tell you how much virtual relief (if this is even a term) you will get, just from knowing that someone is listening who truly understands you. />
Im not in your situation exactly, as all my pain is deep in my ear (GN).
I can however identify with how many doctors and meds you have tried.
I hope you find something that helps. There are loads of things to try that are not on the forfront of DR’s mind. For example I use Butrans patch’s and swear by them. I also use marijuanna when I can (which helps me a lot and so do other users on the forum)
Don’t give up. Keep fighting. TN is a mean mean beast. You beat it down, it comes back with vengeance. There are other ways to beat it down.
Your note is so uplifting, thank you. I’ve not heard of Butran’s patches. I will check with my physician soon. I’m at the beginning of my journey, like you, and I’m so happy to have found this site.
Hi Kathy
I am new here too and have found huge emotional relief browsing the postings and replying here and there. It is like a rose opening. You have a lot to deal with. I share many of them. I also get the sadness. I have a regular drawing practice which is very meaningful to me and takes me out of that sadness. Is there anything you do like that or would like to start? A different kind of medicine.
Bellalarke