I was wondering a few things:
How do you cope with your TN?
How has TN affected your social life?
What’s worse for you: the meds you take or your TN?
I was wondering a few things:
How do you cope with your TN?
How has TN affected your social life?
What’s worse for you: the meds you take or your TN?
TN has basically taken over my entire life…I leave the house to go to school, which is the only thing I do pretty much and other than I have absolutely no social life at all. My family s my other friends other than the few great friends that have stayed around to help me throught it all. My TN is such a big part of my life and I have such an extreme case that I face extreme, severe pain everyday (after 2 failed surgeries); I can’t even open my mouth to talk or to eat or chew because of the pain it brings me so it is the biggest part of my life! My social life is non-existent.
The TN is definitely worse…the meds are really bad and the side-effects of the meds are but the pain from the TN is practically unbearable
Let me know about you…
-Michaela
I was a social butterfly and now Im a hermit
It totally sucks…I used to be fearless and now I have like panic attacks if I go somewhere for longer than 10 minutes. I was so independant and now I cant even imagine not having Kevin here to take care of me lol. I guess I was lucky the he proposed to me and stuck through it with me when I spent months keeping him up half the night.
At first I couldnt really cope with the TN at all honestly. I suffered through the earaches and the headaches and the toothaches for years and it just kept getting worse…but when the shocks started it was like OMFG OMFG OMFG why me??? WHY??? Plus I phoned my sisters mom who worked in a neurologist’s office and when I explained the shocks he said get an MRI…it sounds like you have a brain tumor or an aneurysm (or however u spell it)
So it was like omg…Im probably dying…I cant tell my new husband that… MRIs are expensive…what if I get a scar?.. what if its nothing and kev gets upset we wasted thousands of dollars on tests?..what if i get brain damage or paralysis or…and the list goes on…definitely didnt destress myself probably just made it way worse lol.
But ya know the stuff that bothered me the most was the way people responded to me telling them what I had once I was diagnosed. Once I gave it a name that wasnt cancer or a something they knew they were like oh ok it must be like some people that get alot of migraines…your fine…um…u walk in my shoes for a day and tell me that…
People calling me a hypochondriac or saying I was just being a baby over a little headache or flat out not believing me when I told them what I had just because they had never heard of it… long long friends of mine suddenly thinking im “the sick chick” or something and not calling or stopping by much anymore…if at all…thats what hurt more than thinking i might be dying honestly.
But lets add the annoyances to this topic while we are at it lol
Like I was originally diagnosed by a neurosurgeon who happened to stand in for a doctor (thank gawd)…so…I call 6 of the most prestigious neurologist’s offices around Newport Beach California…thinking hey if I need to know whats wrong I want the best of the best to look me over…only to have this happen:
Receptionist #1 Sorry hes on holiday for a month
Receptionist #2 He has appts scheduled for 3 months so how about 4 months from now?
Receptionist #3 Oh Im sorry he only works with elderly patients
Receptionist #4 Oh Im sorry he doesnt work with pain cases…WHAT?
Receptionist #5 Oh Im sorry #4 and #5 doctors are partners neither work with pain
…i have a neurological disorder…
Receptionist #5 Yes but you said you are in pain the doctor doesnt work with pain patients because they upset the other patients
…isnt that what a doctor is for???.. hangs up
Receptionist #6 Oh Im sorry doctor only works with children he is partime surgeon too
…so should I just wait here til a tumor falls out of my ear or tell you Im Britney Spears so you rich bish Newport Beach doctors will see me??? The hospitals here refer you to a neurologist…so yea epic fail and part of why I still havnt gotten an MRI…for all I know I do have a tumor… just cant find a neurologist unsnobby enough to take a couple of hours out of their day to give me and MRI and tell me whether or not Im sick or “sick”