It's all in my head? No, it's, I'm it's purely

Ok Ive def reached the “chronic fatigue” stage here…barely functioning at 1/3 of the “old me”, having whats becoming “regular 3am anxiety attack” (along with a daily fireup) and I find myself daily stuck on this one fear/thought…

“Is this real or am I mental? Is it all in my head (caused by long periods of stress, relationship strains, etc) or is it simply physical?”

Can’t find peace of mind lately, I’ve seen the photographic evidence at Hopkins of at least one artery compressing the Trigeminal nerve, but can’t help but to think “what if I come out the other side of this MVD and the intense pain episodes remain? Does this mean I’m crazy?”

I’ve been referred to therapy but haven’t had the courage to follow through on adding another Dr/helper to my current rotation…any guidance?

you are not mental, its not all in your head...these are questions i ask myself daily when the pain is bad or im exhausted and get no rest. I think its the bodies way of being in denial because accepting the reality is accepting the horror show of how much shit you have had to go through . Every day you just 'hang on in there' and its exhausting in every way possible. Most people feel a strain on everything like relationships and everyday stresses because it is so hard just to put a mask on and act fine when you living with this horrible illness, some days you just dont have the energy to 'play fine'.

As for your reaction to a scan you have seen, i understand that feeling...sheer disbelief. When i was shown a scan that showed i had bone missing in my face due to an infection that made me feel my face was dying since i was a teen, i just couldnt believe it, i had decided i was nuts.

Even when i was told i needed a surgery i kept thinking 'maybe its not that seems extreme, maybe i exaggerate..maybe im ok..they can misread scans' Because that is how many years i have had to tell myself ' your ok mel, you will get better soon, maybe your pain tolerance is low or something'. Having people ask all the time, 'oh hows your face thing? does it still hurt?..oh dont worry love you'll feel better soon, i promise :)'

Those comments made me both irritated with people and myself..were they right? Was my illness gonna blow over with no diagnosis or was i right..was something verry verry, that couldnt be, thats too extreme sounding, i must be mental thats what it is!!

Basically albee all my rambling is to say, you are not alone in this feeling and im sure alot of people on this site share that exhausting frustration as they try there best to cope on a daily basis with what is happening to them.

I'm sorry it has reached that stage for you now but as you have pictorial evidence that something is wrong..something is wrong, it will sink in at some point and you will not doubt yourself, for a a while at least and we are all here to support and listen to your frustrations so dont be hard on yourself ok?

best wishes mel x

P.s i think what i wrote might be confusing..that would be the tegretol, apologies.

Oh and FYI..i couldnt take it anymore either, i have my first appointment to see a psychiatrist for the same feeling your are describing this month because i can only compare the mental torture with the grieaving process when someone dies and i feel ever so alienated, though people may think mental help is extreme, just remebr your mind affects how you tolerate pain, tired mind, everything feels more painful..thats my opinion anyhow!

I have generalized anxiety disorder so i have been through this feeling with myself but the pain is so intense I would never do this to myself!

What is your barrier to seeking counseling? If your closest family member was in need of outside help would you dissuade them or tell them it's okay to take care of themselves mentally and physically. Have you tried benzos for anxiety?

At least you are at Hopkins - grrrrrreat place to look for answers and treatment!

Hey Albee,
I understand your feelings and your hesitation to add another Dr. Appointment to your schedule, however I do feel seeing someone who can help you sort through all your feelings and provide tips on how to manage living with chronic pain and all the emotional effects would be beneficial. Being able to talk about our feelings and all the repercussions TN has on our life helps us to validate everything and slowly work on ways for it to have less of an impact.
It’s worth a try.
As for your upcoming mvd. I’m going to share my thought process as I too have agreed to have an mvd this new year.
In my case I have not had a specialized MRI to show compression, my Neurosurgeon has agreed to do my surgery based on my normal, basic MRI and my neurologists medical history of me. I will find out more on his thoughts when we meet to consult. I trust him and know he is very specialized in the mvd surgery and TN.
For me, it was the days when my meds relieved my pain that I questioned whether or not I had TN…this past year, there has been no doubt, unfortunately.

That being said, I struggled with the idea of mvd for some time, there is NO cause for TN nor a cure. There are a whole lot of theories and guesses…“they” have found that if they find a compression on the 5th cranial nerve in someone with TN, by removing the compression and sometimes adding Teflon padding in between it can offer relief of pain to TN patients for a length of time.

There are NO guarantees. BUT for ME, it’s a chance to get some relief , and perhaps have a break from these high dose meds that really aren’t good for my mind or body.

I know it’s NOT a cure, and I Know I might wake up with TN pain, because we’re all individual and this surgery depends on the skill of the surgeon and what they find when they go in as well as many other variables.

But I HOPE and I pray that this surgery offers me a much needed respite. The power of positive thought!
You’re not crazy and neither am I, we just want TN to go away!
(( hugs ))

Albee – I so identify with your feelings! When the gamma knife burn #1 began to fail, I was at the end of my rope and had another gamma knife because of my fears of side effects from the MVD. As the second GK failed, I had had enough and contacted Dr Carson at Johns Hopkins, flew across the US to have him do his best to “change” this harsh pain, he did find a large vessel on the nerve which was hidden in the MRI. He used the technique of using muscle from my scalp to wrap around my precious nerve and it worked! The harshest of pain was gone after 4 years of torture! The problem that remains is damage from the GK radiation burns, which appears to be AD.

I am so grateful to the people at Johns Hopkins who worked to help me. All of the staff were amazing, positive and fully supportive of my well being. The surgery changed my life for the better.

In almost 11 years of this experience, counseling has been so valuable to myself, my hubby as well as our children. This is a family disease. It is a tough road, but for those who find themselves in the rugged terrain of this disease, will also find the hidden fortitude to press on with full acceptance and full assurance that life will change for the better, even though it seems pretty bleak right now. Our family would NOT have done so well if it hadn’t been for our trusted counselors, family, friends, pastors and the like. Part of us really dies with illness, but there is new growth in its place.

PM me anytime you might need to talk. Take good care, my Friend!