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Old 03-18-2007, 02:12 AM   #1
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Does anyone know what this could be?

Hi, I am 26 year old woman with 2 kids. And i am miffed as to what my symptoms are, i am in the uk and we can not self refer ourselves to a neorologist (sp) which is where i want to go, we are also registered with a certain doctors clinic where their are numerous doctors (gp's), i have seeked 4 different opinions within my clinic and have been told different things..

This has been going on for about 5 years, i had an mri of the head and i have had 2 ecg's (electrodes on my head) and they were all negative.. my blood pressure is on the low side of normal 105/60, But this past few months have gotton worse.. here are my symptoms:
  • pain in my right ear. (no sign of infections, just a scar from infections as being a kid).
  • ear feels as if theres wind blowing in it sometimes.
  • pain all around the ear. (skull area)
  • pain in my right temple following onto my right cheek.
  • pain just above my right temple.
  • pain above my right eye following from above my right temple.
  • pain down my right hand side of my neck as if its follows on from my ear.
  • my neck clicks when i move it sometimes grinds.
  • on a flare up i call it my right eye waters a little, and the areas with pain are tender to touch, tender when i cough, tender when i sneeze and tender when i move my head. (lasts few hours).
  • tingling down right side of my face.

I have been told, migrane (but i have had migrane and thats throbbing?), Trigeminal Neuralgia? tmj? ( i dont have an overbite nor do i grind, no sign in my teeth of that but my jaw does click when i open it). i was worried about it being a brain tumour but have been reasured that the pain would get worse, i would have high blood pressure, and other symptoms, and have been told that the sympoms i am experiencing wouldnt be seen as having one of these. so i am reasured of this, but i really want some answers and am not getting any.

I have been to the dentist ordered a mouthguard just incase, and i been refered to a dental consultant at the hospital, (can they do a ct scan?) been to the opticians, all is ok he took a pic of behind my eyes no shadows or anything..

does anyone know what this could be?

If your in the uk and see a neuro could you ask them for me? i am so desperate..

thankyou xx

Last edited by mumindistress; 03-18-2007 at 02:20 AM.

 
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Old 03-18-2007, 03:48 AM   #2
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Re: Does anyone know what this could be?

Hello,

The diagnosies you've been given could be correct - although trigeminal neuralgia is meant to be one of the worst types of pain out there - it's been described as excruciating - so my guess is that kind of pain would have inspired a trip to casualty. The tmj or migraine angle is also possible - although if you experience migraine and it manifests itself differently maybe not. Although the pattern of migraine pain can change. TMj is also definitely a possibility - you don't require an overbite or to be a grinder to have tmj. It can definitely have all the symptoms you describe- furthermore you may clench your teeth whilst sleeping and not even know it.

One thing that did occur to me that you didn't mention is cluster headaches. All the pain you describe is one sided - this is characteristic of cluster headaches, I was also interested that your eye waters - another feature. I'm guessing if you have it you might have a slightly atypical form, but I would look it up and see what you think.

The lunatic thing about all this is that you have been sent for an MRI and tests and yet no one has referred you to a neurologist!!!!!! Why not? I simply don't get that AT ALL. I can guess at possibilities based on what I know and what you've said, but obviously I'm not a doctor. If you have any of the above conditions and are in constant pain, then you should be given either a migraine preventative, there is a drug you can take for tmj - amitriptyline etc... You should be in the care of a specialist.

In your shoes I would absolutely push for a referral to neurologist. It's good that you are seeing someone in a dental hospital, but I'm guessing they will want to make sure that a neurologist has also taken a look at you. You should see both. Maybe the dental hospital will refer you on.

Hope this helps,

best,
__________________
hbep

Last edited by hbep; 03-18-2007 at 03:50 AM.

 
Old 03-18-2007, 05:22 AM   #3
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Re: Does anyone know what this could be?

i'm sorry to hear that you are suffering and no one can help you. there are so many illnessess and some that are rare which the drs aren't always aware of. maybe you have something viral? they should refer you to a disease specialtist. it doesnt hurt to try. OR you can suggest they perform an x-ray just of the neck area. if your neck is pinching on nerves, it could very well be causing your symtoms. especially since you hearing clicking in the neck.
I wish you well and wish I could help you. but I have no answers. those are the only two things that I could think of. I understand your frustration that the doctors can't determine what is is right now. so you're trying to do research on your own. sometimes patients have to go to that level in hope that maybe someone else has suffered with the same diagnosis.

please remember to keep us updated.
hang in there.
Linda

 
Old 03-18-2007, 07:12 AM   #4
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Re: Does anyone know if this could be tmj?

the jaw clicking is a sign but i think you would have an overbite if it was tmj

Last edited by Roger321; 03-18-2007 at 07:13 AM.

 
Old 03-18-2007, 07:43 AM   #5
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Re: Does anyone know if this could be tmj?

Mum, I am sorry you are going thru this. I can be stressful. When I first started seeing symptoms of TMJ, I had really bad anxiety, that still lasts today. Your symptoms sound like some of what I go thru. My rt eye waters also. I hope you feel better.

ROGER, Out of curiosity, what would an overbite have to do with TMJ? An honest question, not sarcasm.

Last edited by taylorsmom93; 03-18-2007 at 07:44 AM.

 
Old 03-18-2007, 09:40 AM   #6
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Re: Does anyone know if this could be tmj?

your joints(if it is a joint problem and not a muscular problem) are too far back and that moves the lower jaw behind the upper jaw causing an overbite. i had normal occulsion until getting hit in the face and pushing my lower jaw back which gave me a 15% overbite

Last edited by Roger321; 03-18-2007 at 09:41 AM.

 
Old 03-18-2007, 01:17 PM   #7
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Re: Does anyone know if this could be tmj?

OK, I was just wondering. The last time I went to the dentist, he said I had an 80% overbite, none of other dentists I had ever seen had ever mentioned an overbite, I do know it seems weirder than it had before all this TMJ stuff. Thanks!

 
Old 03-19-2007, 01:18 AM   #8
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Re: I am so miffed, does anyone know what this could be?

Hi, this could be an inner ear problem, check out the inner ear board on here and see if you can see your symptoms in others there, it is something normal GPs miss because they can't see in there. You can have the migraines withour the headaches, so the diag could be correct there, many people with an inner ear problem are diagnosed with these type of migraines.

Take a look.
Jayne

 
Old 03-19-2007, 02:03 AM   #9
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Re: Does anyone know what this could be?

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Old 03-19-2007, 10:11 AM   #10
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Re: Does anyone know what this could be?

Hello

Im from the UK also and these are my symptoms as well except mine started on the left and occasional i have slight symptoms on the right but no where as bad ,the only symptom i do not have is the watery eye

when this all started back in June last year i was so worried i had a brain tumor I'm I'm a very positive upbeat person and until that point had never had anything wrong with me ,

Both my Doctor and old dentist diagnosed TMJ just from my description of my symptoms my old dentist gave me a leaflet and showed me the door !!!

i have been luck and after searching on line i found a dentist who had a bit of experience with tmj after doing lots of feeling about measuring my opening and listening to my symptoms he showed me were my teeth had been worn flat by grinding at night I'm hoping this is what had set all this of ,i wasn't aware i grindeed and my husband has never noticed me in the twenty odd years we have been married !

So he has made me a lower bite guard that i wear at night and very slowly i seem to be getting some were But like you after a trip to the Docs and dentist thats it i have good days and bad

i have also changed my pillow for a neck support one, i am taking glacosamine ,have had reflexology every month , don't lift heavy objects ,give the caffeine a miss ,don't eat chewing gum ,stick to mushy foods ,and try to look after yourself and lower stress,not easy with two children i know ,I'm typing this with my ear plugs in as my teenager has his rock music on !!! lol

I'm sorry i cant give you a solution to this but just wanted you to know you are not on your own with this

 
Old 03-28-2007, 02:47 PM   #11
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mumindistress HB User
Re: Does anyone know what this could be?

hi mash, could you give me this tmj specialists name? i can not seem to find any tmj specialists in the uk to give to my dentist to refer me...

thankyou

Last edited by mumindistress; 03-28-2007 at 02:47 PM.

 
Old 04-03-2007, 06:58 PM   #12
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Re: Does anyone know what this could be?

hi,
I am a newbie on here and too alot of my symtoms and REALLY need help and to know if anyone knows what it can be i just don't believe it's only panic and anxiety attacks it has to me more. There are so many pysical things i feel. Where do i begin. I get lightheaded all the time and dizzy especially if i have to be with people to long outside my home. I am nauseate all the time even though i don't vomit. My eyes sting and burn,my heart races and feels like it's going to come out of my chest, I am SOO emotional,I am easily upset, I always feel like i am dying, I going to sleep and wake up frightened to death, My stomach hurts like lower around both kindneys i was back pain constantly especially if i am like trying to do the dishes, I get dizzy and feel like i am going to pass out all the time, my breasts hurt like heck, sex is so PAINFUL and i always feel like i am going to pass out while having it and never wake up again... I am SO SCARED of dying.my bones ache especially if i bump something. i feel like my legs and neck is going to fall off and sometimes like i just can not support my head anymore.I feel like i'm unable to breathe,my heart will beat so hard and fast if i open my mouth i can hear it,i am either never sleeping or always sleeping,i have a dry mouth always and sore thoart, (I do have very very very BAD teeth). I have dry hair that does not grow and brittle nails, i get shooting pains in my whole body and very bad headaches,i have i feeling of doom all the time, i am always stressed.I am not able to lose weight no matter what i do and if i move fast i can sometimes feel like a huge bump in my right lower ab.
whew i think i covered everything the reason the list is so long is i am so hoping someone CAN help me. I have been to 6 different hospitals and doctors noone knows what to say other then they find nothing and send me home.
I am so scared that i am going to die my husband just says relax and rest you'll be okay and leaves me in a closed room without even comeing back to check on me,what if i stop breathing then. I am scared. I need help PLEASE.
If anyone can help me so i can be healthy or at least torerate this illness please do so i have 2 small grls 13, and 4 and want to be the mom they need and deserve. This started at 33 i am now 40...It wasn't so bad then but keeps getting worst.
thank you,
tina2367

 
Old 05-22-2007, 04:43 AM   #13
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Re: Does anyone know what this could be?

Hi,
Me again with some new information...Is anyone else feeling like this or going through this? I am now almost daily getting heart palipations and sweating ,dizziness,light headedness , dry mouth, no energy or it's through the roof,gloomy feeling of death, too much sleep or not enough, diareaha or cosapation,losing focus, throat is swelling, and now i have been taking my temp regularly it is crazy...it will be as low as 96.2 and that's when i will be so cold and have chills and shakes...Or in the 99's and that's when i am sweating. I have feelings of passing out in the stores in the shower in the school. Sex is scary because when i start to reallly get into it now i feel like i can't breathe
and i am going to pass out.
I am still being told this is anexity....But everyday and to this extreme...someone PLEASE help me....................tee

 
Old 09-05-2007, 02:30 PM   #14
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Angry Re: Does anyone know what this could be?

Quote:
Originally Posted by mumindistress;2***304
hi mash, could you give me this tmj specialists name? i can not seem to find any tmj specialists in the uk to give to my dentist to refer me...

thankyou
Hi there gosh i know what pain your in i too suffer from this and after visiting my dentist 2wk ago in agony he sid he would refer me to a specialist at North Manchester Hospital i have got my appointment on the 12 of september which i think is very quick.the consultant,s name is MR AJ BALDWIN ORAL SURGEON, Don,t know if that,s any help to you,but i hope so,hang on in there and keep going back to your dentist as i did.:

 
Old 10-10-2007, 04:51 PM   #15
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Re: Does anyone know what this could be?

To Tina2367
Have you had your hormones checked. Sounds like menopause to me.
PS. This is daddyo's wife answering your post.

 
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