As much as we like to see our results come back normal, after waiting for an MRI for 4 months it has left me very frustrated. If everything is 'normal' then why has my life been turned upside down overnight? Now I have to wait a month and a half to see the neurologist to see what he has to say. My pain is ok on Tegritol for the most part but I am so exhausted and weak most of the time. I am normally a very energetic, fit person and now I can barely vacuum 2 rooms without complete exhaustion. I am not handling any kind of stress right now and I feel like I am going crazy. I have seen almost every type of specialist there is and so far they have come up with are thyroid nodules that they will re check in a year. I really just want answers and treatment, not to mention my life back.
My doctor here in the states gave me a couple months prescription of ritalin for energy......low dose -- I asked cause I read it here or somewhere --- I needed energy and concentration the 2 months before my surgery - cause I was runnin on empty - he says his epilepsy patients have same problems on these meds and with their condition - no focus - no energy-- so he didn't even blink twice about it!
Couldn't hurt to ask - it didn't make me HYPER -- it just put me back to "medium speed" on the blender of life
I had one a few weeks ago and the radiologist reported normal (apart from a worn-out c-spine and a thyroid nodule too!). But then what really frustrated me was they didn't use contrast so how would they know if a blood vessel was pushing on the nerve or not, grrr! If all is normal with contrast etc (did they use it?) then perhaps the problem is within the nerve itself or nerve root.
I hear you with the exhaustion! On the good days I do housework and on the bad days I don't (today was good, I vacuumed and cleaned the sticky handprints off all the walls, did a load of washing, folded another, cleaned up the kitchen that I left from last night cos yesterday was a bad day and dusted). My husband has even commented to me on the "state of the house" which REALLY peed me off, I think I am doing incredibly well considering! (and people think my house is tidy considering it has a 2 and 4 year old so he can stick it!).
That is really interesting about the ritalin, have only ever seen it prescribed for the usual ADHD (though I knew it has the opposite effect in people without ADHD). I'm on the coffee lol!
Collette, my MRI was normal. I have a vessel very close by and they think when my blood pressure goes up it swells and hits the nerve. I always have a little tremble when I see members here pinning so much hope on an MRI as often times nothing is seen. Likewise on post mortum it is sometimes reported that there is something on the Trig nerve yet no pain had been felt during the deceased lifetime, and as you know they would have a job keeping this quiet! There is still so much the "experts" do not know!
Collette, my MRI was normal too. It was done without contrast. I had it done a few months before my TN dx for migraines.
I have a 5 and 6 year old and understand how quickly a house can get into a state. I’m like Porcelina - when it’s a good day and I’m not so foggy and tired, I clean.
I’am also on coffee!
My MRI test was normal also. No compressions shown. I am have the MVD surgery on April 20th. My doctor said they could go in and find nothing did I still want the surgery? I felt like saying, let me taser the side of your face and see how you feel?! I hope this sugery helps me. I have had this for 7 years now. I am having stabbing pain in my ear right now along with on/off pain in my face. anyone else have pain in their ear?
I also feel like a zombie on these meds. I have a very good fiance who does most of the housework and bills. He is great.
Anyone have the MVD surgery with no compressions and the dr.'s found stuff when they went in? I won't know where to turn if they doesn't help!
Kristin - I have pain in the ear. My neurologist increased my dose Gabapentin and that seems to help. I do get breakthrough pain but that’s a different post.
Regarding your ear pain…I totally know how that feels. I always say its my ear because it’s the easiest way to describe it but really it’s deep deep down next to my ear. The ENT said internally my ear is fine. Oh but the pain is excruciating. I often feel like my ear is going to explode! It feels like I have pressure being built up in my ear. It is 100x worse than any ear infection! The only thing that I have found that helps a little bit is keeping ice packs on my left side all day and all night. I go to see another surgeon Monday…ready for some answers as to what I should do.
Good luck!
Nikki
Kristin Forrester said:
My MRI test was normal also. No compressions shown. I am have the MVD surgery on April 20th. My doctor said they could go in and find nothing did I still want the surgery? I felt like saying, let me taser the side of your face and see how you feel?! I hope this sugery helps me. I have had this for 7 years now. I am having stabbing pain in my ear right now along with on/off pain in my face. anyone else have pain in their ear?
I also feel like a zombie on these meds. I have a very good fiance who does most of the housework and bills. He is great.
Anyone have the MVD surgery with no compressions and the dr.'s found stuff when they went in? I won’t know where to turn if they doesn’t help!
I am so sorry Collette that you are having to go thru all of this as well. I have had 3 MRI’s and 2 CT scans all coming back normal. My question is did they do the “fiesta MRI”? I live in a city of 200,000 and I was shocked when the surgeon here told me we do not have the capabilities or the MRI techs are not trained properly to “zoom” in close enough for a clear view (i don’t know if I explained that correctly haha) He said I need to go to a bigger city for a Fiesta MRI. So now I’m being sent to Dallas. I don’t know if this might be the same for you but you may ask.
I, also, understand about the extreme exhaustion. I have my good days and bad days but even on my good days if I overdo it I pay for it later in the evening with excruciating pain. I try to do the basics of house cleaning and my husband really helps do the rest. My mom also will come in every two weeks and really give it a good cleaning. Your body will get use to the Tegretol. This medicine is known to be one of the cruelest meds because of its side effects. Give your body time to adjust. It may take a few weeks or it could take a couple of months to really adjust. I am on 5 medications and I am like a zombie all day. It has been 3 months and the exhaustion has really had an impact on me. I’m ready to have “life” back into my life!!
Wishing you a pain free day!
Nikki
thanks for answering me both of you. I feel like a can't breathe when I am like this. Waiting for the next shock to hit me. I can't relax I guess. I was crunching on potato chips for a couple of days and I think that is what brought this on. You think I would remember. Now soft foods and no talking will help. Same for you? The 20th can't come soon enough!!
Thank you so much everyone. I already knew about the reality of a normal MRI but to hear it from all of you helps me a lot.
Kristin -- I hope you keep us posted on your MVD recovery and outcome. I know 2 people that showed nothing on MRI, had the MVD and are pain free, one of them has been pain free for 7 years. I will be thinking of you. As far as crunching chips . . . they are my weakness too (popcorn as well). I think we remember but are in denial.
Nikki -- I can totally relate about the ear pain and it feeling like it would explode. I could not lay down for 12 days because it compounded the pain. I only had a thin slice, non contrast MRI and that was a fight to get. I live 3 hours away from the nearest MRI, my (first and fired) neurologist would not even order one because her 'touch the nose' tests showed no sign of MS, so my GP ordered the MRI and GP's have limitations as to what type they can order, not to mention the longer wait time. When is your fiesta MRI? -- sounds like a party with nachos and sombreros! That is nice of your mom to do that for you, just thinking of housework now is exhausting and I am a bit of a clean freak. My mom and dad are in their 80's and need our help so my husband takes my dad grocery shopping while I visit with my mom. I feel bad that I can't help them more as they are getting really needy. We live quite a bit out of town, otherwise I would send my teenagers to help them more, but me not driving complicates everything. Like you I miss not having that 'spark' and my life back.
Porcelina--that is weird that you have thyroid nodules and my c-spine is worn out too! I have cervical spondylosis (3 bulged discs). I hold a lot of tension in my neck so I am going to try cranial therapy and acupuncture. I know you have had a rough go of things lately, how are things now . . . other than dealing with pains and drugs?
Jackie -- that is interesting about your blood pressure. I do find stress affects the pain. Three teenagers (even though they are 'good' ones) create a lot of stress.
KC Dancer -- interesting about the ritalin. I have other health concerns that I want to get sorted out before introducing any new drugs but I will keep that in mind. How are doing after your MVD?
Jennifer -- isn't it a shame that when we feel good, we clean. I was thinking that it would be nice if I could hire someone and do something for me when I feel 'good'. I think it is a guilt thing and for me I get down when my house looks like a pit.
Wishing you all a pain free day!
A surprisingly large number of members report Ear Pain ( Geniculate Neuralgia) and that is why I started a subgroup which all are free to join and discuss your issues if you want :)
Kristin Forrester said:
My MRI test was normal also. No compressions shown. I am have the MVD surgery on April 20th. My doctor said they could go in and find nothing did I still want the surgery? I felt like saying, let me taser the side of your face and see how you feel?! I hope this sugery helps me. I have had this for 7 years now. I am having stabbing pain in my ear right now along with on/off pain in my face. anyone else have pain in their ear?
I also feel like a zombie on these meds. I have a very good fiance who does most of the housework and bills. He is great.
Anyone have the MVD surgery with no compressions and the dr.'s found stuff when they went in? I won't know where to turn if they doesn't help!
thanks so much collette. I will keep you in touch. Talking bothers me when I am in pain. It is so hard not to talk and be quiet!! I hope to wake up from my surgery pain free. I have to work tonight, answering phones and taking orders. I hope to get through it....last time I was in the back crying and wanting to bang my head on the wall. I sure you all know the feeling.
Well alot of people are praying for me as well as I am praying for you all. Take care.
My pain is a bit better now, thanks for asking. I am still getting background pain now and then but no attacks for about a week now I think. I would like to up my dose of gabapentin to wipe it all out but I don't think I could function normally due to fatigue and cramps in my limbs (kind of like what the tegretol did to me but much less, perhaps I will always have that sort of side effect with those sort of drugs, it's enough to not wake me up but if I do wake up or the kids wake me up it keeps me awake). I'm waiting to see if those ease off over the coming weeks and if they do perhaps I can increase it. I did need narcotics again for the background pain 2 days ago but that's few and far between now and I think using them now and then for bad days is fine. Oh and I get ear pain too, feels like someone is grinding something into the ear from in front of it above the jaw joint up into the inside of the ear!
i also get double vision and bed spins feeling. Hard to get things done or watch tv!
collette - i do also so understand you (as many other that write here - and they are writing my same toughts exactly !)
so many times in the past i've said to people i WISHED they'd find something in my MRI - some kinda tumor that can be removed and have my life back.
people called me crazy and my parents were angry that i talked "this way". these are only people that can not understand the pain and suffering. and the condition that U have something so painful - but all the docrors says all the tests are OK . HOW CAN IT BE O.K with such PAIN ?
do u have what consdiers to be ATN ? ( i ask because you say Tegretol helps... and it "doesn't" suppose to help with ATN).
i was noraml guy 2 years ago. done a dental filling - and my life ruined. logically - there isn't any reason to suspect somthning in the MRI (cause the cause is a dental procedure) ... but i still hoped).
are u from the US ? u too wait 4 month for MRI ? this is unhuman to people in which every day is suffer to them .
Kristin - i know the fear.. .of thinking if they open you for MVD and see nothing - what will u do then. i can understand the fear.
i wish you so much luck with that.
also - about talking - nobody can understand this. i try not to talk - but you can't explain that to peopel...i sit with them and don't talk even if you want to ...
it's so unhuman.
i can't even write stright now.
It is inhumane . . . if only they understood the pain. I am a Canadian . . . my MRI was actually fast tracked because I am on sick leave right now and my work insurance wants me to get better so they don't have to pay disability so they paid for it privately.
I have not been diagnosed with ATN, the neurologist just said I have TN but I get 24/7 burning in my ear without tegritol. I also get ice pick pains around my ear. I am going to get another opinion and to get better drug combinations or another option because I was told drugs were my only option because they are 'working'. If I can't function anymore as a mother then they are not working.
I feel so bad for everyone on here, it breaks my heart that so many people are frustrated, helpless and in pain. It helps me because I don't feel so alone but it also breaks me down too.
Wishing everyone a pain free day.
Nir Morita said:
collette - i do also so understand you (as many other that write here - an...
so many times in the past i've said to people i WISHED they'd find something in my MRI - some kinda tumor that can be removed and have my life back.
people called me crazy and my parents were angry that i talked "this way". these are only people that can not understand the pain and suffering. and the condition that U have something so painful - but all the docrors says all the tests are OK . HOW CAN IT BE O.K with such PAIN ?
do u have what consdiers to be ATN ? ( i ask because you say Tegretol helps... and it "doesn't" suppose to help with ATN).
i was noraml guy 2 years ago. done a dental filling - and my life ruined. logically - there isn't any reason to suspect somthning in the MRI (cause the cause is a dental procedure) ... but i still hoped).
are u from the US ? u too wait 4 month for MRI ? this is unhuman to people in which every day is suffer to them .
i sometimes envy with those that have families (husband/wifes)... at least there are not alone. BUT - even a life partner can't take this pain. when it hurts all day - it doesn't matter who's with you - he can't take the pain. and i guess it's fraustrating to be all day in that "needy" and suffering place. ... ot just for yourself - but for the surroindings.
about children - i can't imagine growing children in that situation. don't know how i could have done it. i wouldn't.
and finding a relatioship while being on this 24/7 pain - is impossible. so it's being alone - with the pain for the rest of my life :(
I think a lot of neurologists don't really have too much of an idea about TN (the one I saw didn't, he tried to tell me I didn't have TN because attacks last longer than a few seconds!). Nir, tegretol can help with all types of TN. Tegretol helped me before I had a reaction to it, I definately have ATN as off meds (or even about 2 hours before my next dose) that background headache comes back (and it's unilateral on the TN side so it's definately the TN).
I have read that if tegretol works it's a positive diagnosis for TN. Which makes sense really. So when I next see a neurologist I will tell them that it's definately TN I have (and go so far as saying it's definately ATN!).