Why does it come back?

Hi Everyone

I had the MVD at the end of April this year. The TN pain continued for approx. 2 mths afterwards which was incredibly disheartening.

I have however, been pain- and drug-free for the past four months. It has been the best time of my life in the last 8 years. With that pain having gone, I have been able to look at other health issues and begin to deal with those and that's been fantastic.

At exactly 1:33am today I was woken out of not very deep sleep with the excruciating return of TN pain. WHY?

Honest to God, I don't think I can go through this again. So much so I have been looking at an end of life site. Sorry, but I have. I can't do this again. I know that is super-dramatic but this morning took me right back to the hell of the TN. Just prior to the surgery, I had been placed in a psych unit for trying to end my life. I could not take it anymore. I know you all understand what I am saying.

The ONLY thing I can think of is that I had a busy day at work yesterday. We had an all-day function on a different floor to where I am located and I've been up and down between floors carrying all sorts of heavy boxes, food, etc. It is the most activity I have performed since the surgery. I'm really sorry if this is a dumb question, but could this have anything to do with it? I've not done a scrap of exercise or lifted anything remotely heavy since the surgery and then all of a sudden yesterday I was all over the place at work sorting things out on my own.

I have taken it very gently today and so far, nothing else has happened... but am just living in fear waiting for the next lightning strike.

I don't want to go back to meds... they've destroyed my gut and other health issues have arisen from that and it is these issues I have been trying to address over the last month.

Can anyone provide any insight as to why it returned and how they dealt with it? I'd be very grateful for any response. thank you so much. Belinda

Hi Hang in there and know that you are not alone, I have not had a MVD Yet so do not know exactly what you are going through I have had my TN flare up after carry a lot of heavy boxes moving maybe it will go away stay positive Good luck and God Bless

thanks Kat. I'm not sorry I had the MVD. It gave me 4 months of pure bliss. I just want more. :) I suppose all I can do for now is just wait and see what happens. But as scared as I am of the idea of doing anything about it.... I don't want to live with it again. My hat off to people who've had it longer than me - you're stronger than I am. :)

(( Belinda )),
"Why does it come back?"
That’s the million dollar question!!
I completely understand your fear of it returning, as it once did. Very valid fear…but sooooo important to set your mind to positive thoughts…it could very well be from your crazy busy work day…too much for you. Now take that info and run with it…no more crazy work days like that.
Truthfully we don’t know why it comes back, lessens or goes in remission, not yet anyway…but you’ve been doing so well. I hope your pain stays away and this was just a horrid reminder of days past !!
If worst case scenario the pain did return, it may respond better to low dose meds due to MVD. That’s been the case for me, except the low dose part…but we’re all different!
So positive thoughts and take good care of you!!
(( hugs )) Mimi xx

Thanks Mimi. Sorry to be such a drama queen about it all. Everyone here is dealing with the same crap. Prior to the surgery I was just at my wit's end. I was just hopeful that after so long, I could finally start feeling better and deal with other stuff that has been on the back-burner while I tried to get through each TN-filled day. I just can't go back. I am hoping it was just yesterday as usually when the attacks come, I can feel the side of my face burning prior to them ..... and I don't have that at all today (or yet). At least it is the weekend now and I can just watch and wait.... and be gentle. Thanks so much for your advice. :)

Hi Belinda,

I had my surgery in May and still have some jolts of pain but it’s getting better and I’m finally able to start cutting back on my meds. My neurosurgeon said it could take up to a year for the nerve to heal as it was badly damaged. Perhaps you went off your meds too quick? I know if I overdo it right now I have some pain but it hasn’t ever escalated to prior pain levels. I certainly understand the fear of triggering that pain again. In reading many prior posts recovery time seems to vary for everyone. Keep faith, life is precious.

You are not a drama queen…um hello? You, like me have experienced horrid pain and we live in fear everyday! You should have seen me whimpering like a baby this afternoon, feeling sorry for myself and crying over things I thought I was done crying over…
We’re human, and we ALL have our moments…and it’s all pretty normal behaviour considering what we’ve been through…
Glad we can just be here for one another, makes me feel less alone in this…

thanks MH. I wondered that too... but I tapered off really slow.... the first time I did it, the pain came back so I went straight back on and tried tapering again later.... after that it's been 4 months of, as I say, bliss, so I thought I was ok. Tapering off coupled with dumping an absolute nightmare of a job (at a hospital no less) and I thought I was on my way. I absolutely love my new job and I've been really happy so this morning's "visit" was a disappointment of the highest order to say the least. I think I would have more difficulty coping if I was still in that awful job and there is a local mental health team that looked in on me before the surgery. I guess I can call them if I think I really need to. Perhaps it was yesterday after all. I'm sure I am not the only one who is impatient for things to "get back to the way they were" prior to TN! The pain, the timing, the intensity, the frequency, the recovery seems to be different for every single person as you say - adding to the frustration of trying to understand this thing! thanks so much. :)

!!!! Mimi.... I guess some of us are still too hard on ourselves, eh? I really appreciate this site being here... because nobody else can comprehend that pain more than people who have it. Describing it as lightning doesn't do it justice at all. I've learned so much by reading this site... certainly much more than I have been able to do seeing Neurologists. I just want to be "normal" (whatever that is!) again. The more I want it, the more impatient with myself I seem to get. It's like, come on! hurry up and recover will you?!!! 47 years old and still have to learn how to be gentle. Loads of positive vibes and squishy hugs right back at you! :)

Belinda please be aware that you are not the first this has happened to. I do fully understand your situation and can fully share your pain. First, yes the added physical exercise may have something to do with the return of the TN pain. Remember that only very small pads separate your nerve from the offending blood vessels. A very gradual increase in physical activity is recommended by doctors for precisely this reason. However, it is also possible that one of the pads moved, thus allowing the blood vessels to touch the nerve.

What is more likely is that one of the blood vessels moved to a point of contact with the nerve. I had nearly five years of pain free life after my first MVD surgery. Then, unfortunately…the TN pain returned even worse than the first time. I had a second MVD surgery that was successful only in ending the pain caused by scar tissue from the first surgery. That was followed by two balloon compression procedures and a radiodactic (not sure of the procedure’s name right now) procedure to burn the nerve. No relief at all for me. After going to another surgeon, I was told, “no way” would he do anything at all. By this time I had already developed Anesthesia Dolorosa…a very intense burning pressure that NEVER goes away…plus plenty of TN shocks at higher and higher levels. Just to top it off, I now have a Pineal cyst in that region that also compresses the nerve. Yeah, I know what pain is all about, believe me.

TN was once called the suicide disease…before modern surgical procedures offered some hope of treatment and even complete cures for some. Every day of my life is hell right now. The pain is so intense as to be blinding at times. But I get up and go to work every day. I refuse to give up or give in. Research going on in other areas, most notably MS may one day provide some relief if they can find a way to repair or replace the myelin sheath around my nerve. The damage to that sheath leaves my nerve exposed to constant abrasion.

There is no guarantee with MVD surgery. There is only hope. The second one may work for you…or some other medication may stop the shocks completely. You need not give up. Please go back to your physician and tell him what is happening. Hope might be just one doctor visit away. You are in my prayers. Never give up. Never give in.

I certainly didn't imagine I was the first person this has happened to, Bob. I hope my initial post didn't have me come off as though I thought that! You are living my nightmare - Anaesthesia Dolorosa. Everything about this seems to be so different for each one of us, including how we feel about it and how we cope with it. You have incredible strength to be able to get up each and every day with a situation that is much, much worse than I have ever had. You are in my thoughts also. Very much so. Belinda

Belinda, I don't have much to add to what others' have said to you. I just want you to know that I read your post and that I am thinking about you and admire you for reaching out to us here on this site to share your situation. The members here are so supportive and can understand, somewhat, what you are going through. You mentioned a mental health team that is available. My feeling is that you should contact someone with that team and talk with them NOW.

I wish you strength,


Some very supportive people here wishing you strength and happiness.
I once met a doctor who pointed out that expectations are a key element for this subject.
I went into my MVD with 50% pain reduction goal. On a good day I am 70-85% better now. On a bad day only 50%.
I can create a bad week by overdueing one day.
As long as I remember that this is a long term illness, my mind can stay out of that dark place.
Sending a smile your way, Tree

LOL All though it is really not funny at all but those days I call my pitty party days so I do it up good and then I tell my self that there are people in worse shape than I am so suck it up it works most of the time . I usually call a friend and tell them I am in one of my pitty party moods and we talk sometimes that helps or we go do something fun. We are all allowed to have pitty party days like you said we are all human

Mimi said:

You are not a drama queen...um hello? You, like me have experienced horrid pain and we live in fear everyday! You should have seen me whimpering like a baby this afternoon, feeling sorry for myself and crying over things I thought I was done crying over.....
We're human, and we ALL have our moments...and it's all pretty normal behaviour considering what we've been through...
Glad we can just be here for one another, makes me feel less alone in this...

I think expectation is very much an issue. It certainly has been for me. I, like everyone else who has this, don't want this... so finally after a long time nagging for the MVD, I just had it in my head, CURE! LOL! Of course modern medicine cannot cure everything... but of course we want to think it can. guilty! Unfortunately, people being worse off than me - and there are a lot - doesn't negate how I feel about my own situation - I actually wish it would! I can say this morning that I had no attacks at all yesterday. I'm hoping with all my heart that it was overdoing it at work on Friday. I'm ready to go and be as I was before all of this but I guess my body needs more time - and I have to respect that. My Pity Party is officially over. LOL!

I couldn't be more grateful to each and every one of you for replying. Really. Nobody else gets how this feels. I hope you know how important this site is. And how important all of you are. :)

This site is very important to me, also. And all the members have so much to offer.

We all share a common bond, I believe, and together we are stronger.