What is Trigeminal Neuralgia
Trigeminal neuralgia, or Tic Douloureux, is a neuropathic disorder of the trigeminal nerve that causes episodes of intense pain in the eyes, lips, nose, scalp, forehead, and jaw. T...
Join Now
|
also just here to moan
|
Watch this |
| View More Posts Ignore |
hello everyone,
i dont have a diagnosis of TM. but i wanted to join as i am really struggling with my head/neck & face pain. and thought you could all relate. i'll tell you abit about what condition i have and i know it will sound confusing to you the relation that it has with my upper body & head.. to explain what one feels can be difficult ! i have been ill just over 2yrs, and finally diagnosed with pelvic congestion syndrome.. which are pelvic varicosities (like one gets in the legs). i am waiting for surgery which i pray works so i can get my life back and my normal painfree etc body. i have an extensive case of it and it is very strange as i am 24, slim and never had children. firstly i will add that i am 156cm tall (short) and about 44 kilo... i am of a very small/petite frame so i think that is why it hits my body in such a debilitating way. basically the pain and immense preassure runs all the way up my back. now i get an immense lack of blood flow to my upper body as all my veins in my lower body are engorged with blood and are buldging (pelvic congestion/varicosities are when the blood that should return back up to the heart for pumping backflows and never makes it up). this lack of blood flow to my upperbody is the most debilitating (and just all the sensations and happenings all at once!) its like filling your lungs with air and holding your breath untill your head gets tight (but not the luxury of actually feeling like you have air in your lungs!) my heart races faster and is a very faint pump, this is from my body/heart having to work harder trying to keep up. my whole body trembles/shakes inside. my neck and scalp cramp, the top of my head goes numb and painful like a bruised feeling, my ears go numb and painful and excruciating pain inside my ears that extends to the back of my scalp and even to the back of my throat, my face gets painful and it all extends to where my sinus' are... i have a high pitch squeel in my ears and i get ear distortion badly at times. my vision is faint and this is all every day all day. .tablets dont really help as it is a lack of blood flow and my pelvic varicosities causing it all. its so hard to explain. but my whole body is in complete distress everyday ! im getting worse. like i said, i am waiting for coil embolization on my veins. thank you for reading xx Posted on 11/02/09, 10:11 pm |
| 7 Replies | Add Your Reply |
| View More Posts Ignore |
Im very sorry you are going through so much im here for you if you need me xoxox 
|
|
|
|
||
| View More Posts Ignore |
(((massive hugs))). What you are going through sounds dreadful... I think we can all empathise with anything that gives someone excruciating pain and weird sensations. Do you know how long you have to wait for the surgery? Does anyone know why you have got this condition?
xx
|
|
|
|
||
| View More Posts Ignore |
hello. thanks x0x
well was meant to get referal yesterday. got there and found out he is a registrar only and does not have the power to do it, but he also said that my gynae is also being hesitant because of their lack of knowledge of the condition and instead of ringing the radiologist who diagnosed me and has the proof of my images that it is urgent, she is ringing my GP who has no clue and who also hesitated writing the initial referal to see the radiologist, and she is calling the vascular specialist whom i got sent to who is actually the wrong specialist for this condition and also stated that dye injection is old fashioned ! -- when this is what i needed and had done with the radiologist for my diagnosis. so clearly he knows nothing about it. so instead of my gynae ringing the real specialist they are wasting time. we need that referal ! radiologist does not have the power to write it and offer a bed in hospital... only the gynae or vascular can !!! its just terrible. they are playing a game of tennis with me still even though i finally have my diagnosis.
|
|
|
|
||
| View More Posts Ignore |
and my radiologoist cant ring them and tell them how to do their job.
and gynae is on holidays and did not sort this before she left. and she said she would write the referal, my radiologist rang her whilst we were in the office with him straight after my dye injection and she said yes she would be happy to do it. but now she is hesitating as they have no idea what to write. she should call the radiologist !! next wk got an app with head of gynae.. and i am sure it will be the same problem once again to get him to do it.
|
|
|
|
||
| View More Posts Ignore |
OMG hun, this is completely the kind of situation that I end up in. It's ridiculous. I really feel for you.
On 8th September, one consultant said I needed to be referred to endocrinologist (for something other than TN) ASAP and wrote to my GP. GP did not deal with it. I went away on holiday for 11 days and came back... no referral. I went to see GP and she said: is it about your results? I was like: No, it's about my LETTER from the consultant. DUHHH!!! Anyway, she says she will refer me. I hear nothing so I called the hospital myself last week and got told, that yes they did have my referral, but no appointment yet. Apparently took GP another 2 weeks to send referral to them. As of Monday will be 5 weeks since my GP said she would refer me and as of Sunday will be 2 months since consultant said I needed to be referred to endocrinologist... am still waiting. I have to laugh a bit or I would cry... it's so horrible waiting and trying to make them understand how ill you feel. Am crossing my fingers for you and sending up a prayer. x
|
|
|
|
||
| View More Posts Ignore |
that is just not on !
huge hugs to you !!! why cant she just write it whilst you are there ? that is what my GP usually does.... sometimes.. lol
|
|
|
|
||
| View More Posts Ignore |
Well she's done it now... but because it's the NHS (state healthcare type thing) I have to wait an inordinate amount of time for an appointment with the consultant (endocrinologist) so the longer the GP takes, the longer I have to wait... grrrrrrrrrrrrrrrrr..... and you know when you just feel like you have no idea what is going on? That's how I feel... kinda lost!
|
|
|
|
||
| Add Your Reply |
