Went to see my specialist for my check up last Thursday. She is concerned about the fainting which is becoming regular. I cannot shower without the supervision of my husband and I am reluctant to go anywhere without him. She is concerned that there may be an underlying cause besides TN and she suspects with the other symptoms I am displaying I may have ME. She wanted to refer me to a neurologist to starts tests. I have flatly refused. After waiting - 13 , 16 years - to be diagnosed with TN I will not go down that road again. I shudder when I think of hospitals, MRIs all the poking and prodding. I told her I would rather die in my bed that go through all that again. She said I would not die on her watch. So we have a stalemate. I may sound ungrateful, but can anyone else relate to my situation? I am 64 years old and if I have been given my allotted 3 score and ten I have 6 years left and whatever, how little quality of life I have I will not spend them in hospitals going backwards to doctors who suspect it may be ME of it may not. I will not subject my husband to that. I will rather stay at home and suffer in silence and hide the symptons as much as possible. I have had enough, my husband has had enough and so have my children. Besides my husband is struggling with his own serious health issues which arose 6 months ago.
dsm, although I completely understand and respect how you feel about investigating your current health issues and wading through more test etc etc
I think it’s important to get proper treatment for existing concerns, having TN is horrid alone let alone having other health issues…
Is there anyway your specialist can make the road ahead easier for you, by booking your appointments/tests and doing all follow up appointments?
Can you research online ?
Sorry to hear about your husbands health, you’ve got a lot on your plate! I hope he will be ok…
Let me be a mom and say " you can’t help your husband if you don’t help yourself" 
And I’m sure your kids are fine with helping you out, we’re you not always there for them? That’s what family is all about! 
We all feel like a burden. But that’s “our” problem. ( I need to practice what I preach, ha ha)
Fainting must be scary! I have vertigo and imbalance., I fall over but never to the ground…I can’t imagine fainting!
Dsm, please take care of you, sending positive thoughts and vibes your way!
((((( hugs )))))
You just can't spend the rest of your life
fainting
or ready to faint
or feeling faint
or falling down fainting -- can you?
If you can, and it won't affect your quality of life or your husband - then let it be.
What would you advise others in your situation?
What if not related to ME or TN -- just a minor glitch in your system - or freaky blood pressure deal?
You know what's best for you
and we are here to help
keep venting !
Iknow that what you are saying is sensible.I think I am just fearful they, the ubiquitous they, might find something else wrong with me that I don't what to know about.
Thanks for your support
Kc Dancer Kc said:
You just can't spend the rest of your life
fainting
or ready to faint
or feeling faint
or falling down fainting -- can you?
If you can, and it won't affect your quality of life or your husband - then let it be.
What would you advise others in your situation?
What if not related to ME or TN -- just a minor glitch in your system - or freaky blood pressure deal?
You know what's best for you
and we are here to help
keep venting !
I think I am just tired of being constantly being ill. My doctor has insisted that if this continues she will "take the law into here own hands" and force the issue. And she's lovely, but one pretty tough cookie when she has to be. She is looking at a way of circuventing the usual process and she knows that she is the only doctor I now trust. So we will see what happens and perhaps take action in the new year.
Thanks for the support.
Mimi said:
dsm, although I completely understand and respect how you feel about investigating your current health issues and wading through more test etc etc
I think it's important to get proper treatment for existing concerns, having TN is horrid alone let alone having other health issues...
Is there anyway your specialist can make the road ahead easier for you, by booking your appointments/tests and doing all follow up appointments?
Can you research online ?
Sorry to hear about your husbands health, you've got a lot on your plate! I hope he will be ok..
Let me be a mom and say " you can't help your husband if you don't help yourself" ;)
And I'm sure your kids are fine with helping you out, we're you not always there for them? That's what family is all about! :)
We all feel like a burden. But that's "our" problem. ( I need to practice what I preach, ha ha)
Fainting must be scary! I have vertigo and imbalance., I fall over but never to the ground...I can't imagine fainting!
Dsm, please take care of you, sending positive thoughts and vibes your way!
((((( hugs )))))
DSM, your husband and family may find it a relief to know you are going to be cared for by professionals as it must be a huge responsibly for them caring for you but not knowing what the problem is. They may find it is something which is able to be treated easily and that will mean you will be more able to care for your husband in return. I know it is easier to stick our heads in the sand at times, but often the reality is a lot less worrying then the fantasy and once you know what the problem is it can be dealt with. xxx