Beaten down, sad, and hopeless

For more than a decade, I have had multiple, daily assaults of sharp stabbing debilitating pain of TN. Episodes tend to last about 10 to 20 minutes. I also have rare but frightening episodes of extreme pain zaps that hit me as a flash but completely disorient me as if someone hit me with a cattle prod. The right half of my scalp burns constantly, making it difficult to brush my hair. Is it really too much to ask for a doctor to have some compassion and understanding of the agony we live with on a daily basis? My most recent doctor dismissed me as an uncooperative patient because the anti-depressant she prescribed just intensified suicidal thoughts. She told me it was highly unlikely that an anti-depressant would cause me to have suicidal thoughts. Really? Ever seen a TV commercial for anti-depressants?

I need some hope that this Hell isn't just going to increase. I am already a hermit. I have such difficulty navigating through life dealing with unpredictable volleys of white-hot pain. No one could understand this unless they've experienced it. I am angry because this hideous disease has stolen so much from me. If this is what I'm doomed to live with, I don't see the point

I think we have all had the exact feelings you are experiencing and the frustration of not only the pain but finding help from a Dr that understands. There is a point, no one here can understand why we have this, but I am sure you are loved very much by many and everyone here cares. You are stronger than you think, I know it is hard but I would keep searching for new Dr's. I have had a really bad time lately, I so can relate to how you feel and I do have those days, but I am the soul caretaker of my diasabled hubby (he is only 52), he has been through hell and back and we need each other. And crazy as it may sound unless you have pets, I look at my beloved furs and they need me too....I don't have insurance so my options are limited at the moment, is surgery an option for you? Have you tried any topicals? And yes it is indeed true anti-depressants can cause bad thoughts so get rid of that Dr quick!!! I wish I had a magical answer for you, for all of us, all I can tell you is that we care, I will keep you in my prayers and keep posting, it helps to share with those that understand. So please try, hard as it is, there is a point, you are precious with or without TN, we all are and all have purpose. There is always hope, sometimes it is all we have to hang onto, but I never quit believing someday there will be an answer to this. Sending you a gentle hug!

Betsy

(((( Suzanne )))),
Unfortunately there are Doctors who are not compassionate, and for lack of knowledge about the whole picture of TN or the affects of the meds will simply dismiss you…unfair? Absolutely!!!

“We” have enough to deal with, with our pain, mental/emotional health, meds, side effects and the overall affect this has on our lives…

I’ve learned to trust “my gut” when it comes to my health, although I’m no expert, far from it, I know when something is off.
I’ve experienced what you describe above with your current doctor, and it’s incredibly frustrating…
I’ve had to change doctors a few times as a result.
The stress from not feeling listened too, doubted or supported by your doctor/specialist is not healthy nor worth it.

I too have become increasingly isolated, very drugged up and still have pain that seems relentless at times. I’m currently reducing one med and increasing another of my 3 meds to TRY and find a balance of minimal pain and less “drugged up”…
My neurosurgeon ( who performed my MVD last year) has no suggestions but agrees with my decision to not do any further procedures.
My Neuro & GP support my recent effort to fiddle with the meds…(My Neuro is the one over seeing this effort and has given me the plan.)
All warned me that by doing this I’d experience pain spikes and increases of that drugged-up-ness…I know the risks…BUT what else can I do???
I have to keep TRYING…

All this to say, I understand your anger, I struggle with it too.
I’m trying to reconcile with the reality of my situation …or at least I guess I’m trying to find a middle ground, because I just don’t accept that “this” where I’m at, is my reality and my future…I’m 41, my life has completely changed…

You are not “doomed to live with this” and neither am I !
We have to allow these days of high emotions, high stress, grief, anger etc and then we need to re-group and keep trying to find a balance…
Is it possible? I don’t know, I’m no Pollyanna, are there days I don’t see the point? Yes! These last few months have been very,very difficult for me…

But darn it, I’m going to keep trying…and together we can support one another as we try…
Ugh, sorry I’ve run on and on, I guess I had some venting to do…
I understand, that’s all I really want to convey to you Suzanne.
Huge (((( hugs )))), Mimi xx

Hi yes I know exactly how you feel. When I couldn't work I felt much the same. I am taking a day off tomorrow as my injections are wearing off and facial spasms have set in too and I need to stabilise this problem before I go back into the fray!!! Its awful I know and tough to see the point in anything. I live in constant fear of how life will become when I begin to run out of medication options. These things aside today is all any of us have so I live for this moment im in and find peace in the now. Super advice huh?!! Not that helpful but sometimes life comes down to one foot in front of the other and one moment at a time so that's how I get through. Sending love x

I am so sorry for your pain and your awful doctor. Get a new doctor! We have zero control over the pain, but choosing our doctor is one thing we do have control over.

Im at two years, and just fired my "new"new neurologist.

Be proactive. Doctors should be there to aid, not detract from our limited strength supply.

Big hugs. Good luck

Stephanie

Hi Suzanne, I am so sorry you are feeling beat down. I know exactly how you feel. It so disheartening when your doctor doesn’t believe you. I agree with Mimi-- get a new doctor! But please don’t give up. My mom ended her life 14 months ago. It is so hard for me to talk about so I usually don’t bc you know stress gives us attacks. She had had back surgery and was still in a lot of pain when her doctor told her this would be it. All he could do. She just gave up, gave in to the pain.

I was diagnosed with TN 4 months later. Not to be selfish but I needed her. I still do! There are people out there who love you and need you in their lives! I wish I could give you a huge hug. We are here for you and we DO understand. Please PM if you need to talk. I wish my mom would have just called me.