Aa
8 year myster illness. Now facial nerve pain. PLEASE HELP!
Any doctor who can answer this would be EXTREMELY helpful. I am very worried and over 15 doctors at different hospitals have NOT been able to help me.
A little over 2 weeks ago, I started getting tingling on my right cheek and right lower eyelid and right side of my nose. The next day it was a little better, and then returned with the same intense tingling. The 5th day or so, as the tingling continued, it started to lessen, and replaced itself with about 1-3cm sections of my cheek and particularly my lower eyelid in the corner of my right eye BURNING like my skin is on fire. I'd describe it to the feeling of a bad "indian burn." Touching my finger lightly to the area that hurts does help it. It lasts for about 10 seconds, and then stops, and then shows up somewhere else on my cheek or lower eyelid. It's worst at night. I also got some tingling right about my right eye as well. For about 2 or 3 days at the end of 2 weeks, the pain was totally gone, and the tingling was minimal. Now it's been 2 weeks and 3 days, and since yesterday, the tingling is a little worse since the improvement, and the pain reappeared some, and is now hurting sort of close to my eye, above the right side of my lip, and some slight burning on my cheek. The weirdest thing is that the last two days, (I thought I was getting better and was getting off scott free), but now the last 2 days I have noticed that looking at a computer screen or being outside in bright light makes the pain appear. Why would light suddenly cause the pain to appear worse when it didn't before? Any insight on why this would be? And what this is?
* Laying on my left side makes the right side of my face (which has the pain and tingling) start to tingle worse, or start to tingle when it wasn't doing it already. Laying my face on the side that is messed up doesn't do anything to it. Could this indicate some sort of tumor or something putting pressure on the nerve that is affected by the side I lay on?
* I have a little 1/2cm-ish mass that I noticed on the outside edge of my orbital bone on the same side. The eye doctor didn't think that it extended into the eyesocket.
* I have TMJ and had a REALLY bad episode about 5 years ago of TMJ pain. This facial pain I have now is completely different. It is sharp, and almost feels like someone is sticking me with a needle.
* I had my first migraine in 10 years in November of this year. It made the skin on my forehead and all the way over my head and down to the base of my skull VERY painful to the touch. I had never had migraines before where it was painful to the touch. Other than that, it was the standard migraine that starts with snow blindness, and then pain.
* I am noticing about the last 5 days that I am getting a headache starting in the afternoon. It's not quite an "ow ow!" kind of feeling like when you have a sinus headache, but more of a sort of sick feeling headache, like when you have a virus. The headache appeared when my facial pain and tingling symptoms appeared to be going away.
* My 8 year long mystery illness, which I guess may or may not be related to this facial nerve problem started with slight hip joint pain, followed by trouble swallowing a few years later (resolved itself and just went away), followed by a random intermittent non-itchy rash showing up on my stomach about a year later(not resolved), followed by the development of unexplained constant tachycardia and low blood pressure the same year (beta blocker helped this, but made my blood pressure way too low. have been unmedicated with heart rate of 120+ for 1.5 years), followed by a diagnosis of COPD even though i've never smoked and it doesn't run in the family, followed by extreme worsening-over-time fatigue (not resolved), followed by worsening-over-time constant hairloss (not resolved, getting really bad. hair is brittle too and weirdly kinky), followed by dry mouth and dry eye problems about 2 years later, followed by episodes of my lower leg going numb randomly (hasn't happened in 1.5 years), followed by discovery of 1/2" thyroid nodule this year..doctor said it's not harmful, not doing anything bad to me, followed by not being able to see clearly since thanksgiving for 2 months now due to supposed dry eye, which brings me to now, with REALLY BAD fatigue, REALLY BAD hip joint pain, the enamel literally falling off my teeth, and now this weird nerve pain. Also, the last few years I have noticed that I cannot hear what someone is saying when everyone else can. I could have perfect hearing, but it just doesn't feel like it. I hear much better than my parents, but they are in their early 60's and my Dad has hearing aids. I haven't asked for a hearing test because I feel like it might come back as fine and then I'll feel like an idiot and my doctor really will think I'm nuts with all of these symptoms. I tested 20/20 vision the other day even though I had a very hard time recognizing the letters on the screen and have considerably blurry vision. The 20/20 testing was a big surprise to me. I guessed on about 5 of the letters. With everything that has happened with my body in the last 8 years, and it getting worse, and getting new symptoms all the time, now with the facial nerve pain, I feel like my life is being ripped out from under me. I have quit school with only 1 semester left before I graduate because I can no longer function.
I've been tested for hashimotos thyroiditis, lupus, multiple myeloma, Anemia, had a CBC and phosphorus panel done, TSH tested, T3 and T4 tested, and Free light chains or something like that. All were normal. The only thing that is abnormal is a positive ANA, and highly suspected endometriosis since they can't find any uterine masses. With how I feel, I expect something to be crazy off the map in blood work, but that hasn't been the case so far.
*** Lastly I should state that I do NOT have any mental or psychological problems. I am not anorexic despite being unable to gain weight. I'm not crazy, and I'm not imagining all of this. I have done psychological screening to make the doctor's who couldn't find anything wrong happy, and passed with flying colors. Something is truly very wrong, it's just that doctors have not yet been able to find out what it is.
* I am 24 years old, and female.
* Since yesterday, I am getting a slight bit of tingling on the opposite cheek/opposite side of my nose, with continued pain and slight tingling on the right side (where it started). And randomly the last 4 days or say, my skin is dry and peeling over the places where it hurts.
My biggest concern right now though is this facial nerve pain. Any idea what it is and why the computer screen or light would make the pain worse? I'm worried it will get more painful/or be permanent, or cause nerve damage. I understand that this is probably classified as triamgeminal neuralgia, but I want to be sure that's what it is. And if so, any ideas on what the cause could be? Due to it happening so suddenly. I am especially curious as to why light brings on the pain?
A little over 2 weeks ago, I started getting tingling on my right cheek and right lower eyelid and right side of my nose. The next day it was a little better, and then returned with the same intense tingling. The 5th day or so, as the tingling continued, it started to lessen, and replaced itself with about 1-3cm sections of my cheek and particularly my lower eyelid in the corner of my right eye BURNING like my skin is on fire. I'd describe it to the feeling of a bad "indian burn." Touching my finger lightly to the area that hurts does help it. It lasts for about 10 seconds, and then stops, and then shows up somewhere else on my cheek or lower eyelid. It's worst at night. I also got some tingling right about my right eye as well. For about 2 or 3 days at the end of 2 weeks, the pain was totally gone, and the tingling was minimal. Now it's been 2 weeks and 3 days, and since yesterday, the tingling is a little worse since the improvement, and the pain reappeared some, and is now hurting sort of close to my eye, above the right side of my lip, and some slight burning on my cheek. The weirdest thing is that the last two days, (I thought I was getting better and was getting off scott free), but now the last 2 days I have noticed that looking at a computer screen or being outside in bright light makes the pain appear. Why would light suddenly cause the pain to appear worse when it didn't before? Any insight on why this would be? And what this is?
* Laying on my left side makes the right side of my face (which has the pain and tingling) start to tingle worse, or start to tingle when it wasn't doing it already. Laying my face on the side that is messed up doesn't do anything to it. Could this indicate some sort of tumor or something putting pressure on the nerve that is affected by the side I lay on?
* I have a little 1/2cm-ish mass that I noticed on the outside edge of my orbital bone on the same side. The eye doctor didn't think that it extended into the eyesocket.
* I have TMJ and had a REALLY bad episode about 5 years ago of TMJ pain. This facial pain I have now is completely different. It is sharp, and almost feels like someone is sticking me with a needle.
* I had my first migraine in 10 years in November of this year. It made the skin on my forehead and all the way over my head and down to the base of my skull VERY painful to the touch. I had never had migraines before where it was painful to the touch. Other than that, it was the standard migraine that starts with snow blindness, and then pain.
* I am noticing about the last 5 days that I am getting a headache starting in the afternoon. It's not quite an "ow ow!" kind of feeling like when you have a sinus headache, but more of a sort of sick feeling headache, like when you have a virus. The headache appeared when my facial pain and tingling symptoms appeared to be going away.
* My 8 year long mystery illness, which I guess may or may not be related to this facial nerve problem started with slight hip joint pain, followed by trouble swallowing a few years later (resolved itself and just went away), followed by a random intermittent non-itchy rash showing up on my stomach about a year later(not resolved), followed by the development of unexplained constant tachycardia and low blood pressure the same year (beta blocker helped this, but made my blood pressure way too low. have been unmedicated with heart rate of 120+ for 1.5 years), followed by a diagnosis of COPD even though i've never smoked and it doesn't run in the family, followed by extreme worsening-over-time fatigue (not resolved), followed by worsening-over-time constant hairloss (not resolved, getting really bad. hair is brittle too and weirdly kinky), followed by dry mouth and dry eye problems about 2 years later, followed by episodes of my lower leg going numb randomly (hasn't happened in 1.5 years), followed by discovery of 1/2" thyroid nodule this year..doctor said it's not harmful, not doing anything bad to me, followed by not being able to see clearly since thanksgiving for 2 months now due to supposed dry eye, which brings me to now, with REALLY BAD fatigue, REALLY BAD hip joint pain, the enamel literally falling off my teeth, and now this weird nerve pain. Also, the last few years I have noticed that I cannot hear what someone is saying when everyone else can. I could have perfect hearing, but it just doesn't feel like it. I hear much better than my parents, but they are in their early 60's and my Dad has hearing aids. I haven't asked for a hearing test because I feel like it might come back as fine and then I'll feel like an idiot and my doctor really will think I'm nuts with all of these symptoms. I tested 20/20 vision the other day even though I had a very hard time recognizing the letters on the screen and have considerably blurry vision. The 20/20 testing was a big surprise to me. I guessed on about 5 of the letters. With everything that has happened with my body in the last 8 years, and it getting worse, and getting new symptoms all the time, now with the facial nerve pain, I feel like my life is being ripped out from under me. I have quit school with only 1 semester left before I graduate because I can no longer function.
I've been tested for hashimotos thyroiditis, lupus, multiple myeloma, Anemia, had a CBC and phosphorus panel done, TSH tested, T3 and T4 tested, and Free light chains or something like that. All were normal. The only thing that is abnormal is a positive ANA, and highly suspected endometriosis since they can't find any uterine masses. With how I feel, I expect something to be crazy off the map in blood work, but that hasn't been the case so far.
*** Lastly I should state that I do NOT have any mental or psychological problems. I am not anorexic despite being unable to gain weight. I'm not crazy, and I'm not imagining all of this. I have done psychological screening to make the doctor's who couldn't find anything wrong happy, and passed with flying colors. Something is truly very wrong, it's just that doctors have not yet been able to find out what it is.
* I am 24 years old, and female.
* Since yesterday, I am getting a slight bit of tingling on the opposite cheek/opposite side of my nose, with continued pain and slight tingling on the right side (where it started). And randomly the last 4 days or say, my skin is dry and peeling over the places where it hurts.
My biggest concern right now though is this facial nerve pain. Any idea what it is and why the computer screen or light would make the pain worse? I'm worried it will get more painful/or be permanent, or cause nerve damage. I understand that this is probably classified as triamgeminal neuralgia, but I want to be sure that's what it is. And if so, any ideas on what the cause could be? Due to it happening so suddenly. I am especially curious as to why light brings on the pain?
Hi I have worked within the dental field for a few yrs and suffer tmjd myself. I have done further research into health etc. it sounds like the sharp RHS pain is trigeminal neuralgia. And it sounds like it has all come about as the vagus nerve in your body is being pinched- hip- jaw being out etc... If the vagus nerve is pinched anywhere in the body then a while myriad of diseases presents... sounds like your case. I read the book 'Alkalize or Die' and it talks about this nerve. Do u see a ciropractor? And treating tmjd is a very difficult thing to do. The only person I know who can do it successfully is dr. Skipp Truitt, situated in Texas USA.
Sorry to post again. But I was wondering can you get to the Mayo clinic? If you do not think that your doctors will refer, you can try to get in on your own. Here is the website to request an appointment.
http://www.mayoclinic.org/patientinfo/appointments.html
http://www.mayoclinic.org/patientinfo/appointments.html
Also I agree that if not you should be tested for MS. Plus you never mentioned whether or not you have had a MRI recently.
I am sorry you have not had any answers. First you need to get a second opinion on the nodule. That can interfere with the function of your thyroid.
For more information about the thyroid I recommend that you get a hold of "The Thyroid Solution by Dr. Rhida. He is an endocrinologist who specializes in treating the thyroid. Here is a link to the book--
http://www.amazon.com/Thyroid-Solution-Revolutionary-Mind-Body-Program/dp/0345429206
Second endometriosis can play havoc with all systems of your body. You need to find a good doctor who knows how to treat endo. Do not go to a general ob/gyn for diagnose and treatment because they do not know enough. I see a reproductive endocrinologist. If you are in Illinois here is his website. (He is very knowledgeable he trains doctors around the world and compassionate.)
http://www.charlesemillermd.org/
To find a doctor near you that knows how to treat endo (if you are not in Illinois) I recommend calling the Endometriosis Association website. Their contact info is at the bottom of their homepage.
http://www.endometriosisassn.org/
I hope this helps you on the road to answers,
achilles2
For more information about the thyroid I recommend that you get a hold of "The Thyroid Solution by Dr. Rhida. He is an endocrinologist who specializes in treating the thyroid. Here is a link to the book--
http://www.amazon.com/Thyroid-Solution-Revolutionary-Mind-Body-Program/dp/0345429206
Second endometriosis can play havoc with all systems of your body. You need to find a good doctor who knows how to treat endo. Do not go to a general ob/gyn for diagnose and treatment because they do not know enough. I see a reproductive endocrinologist. If you are in Illinois here is his website. (He is very knowledgeable he trains doctors around the world and compassionate.)
http://www.charlesemillermd.org/
To find a doctor near you that knows how to treat endo (if you are not in Illinois) I recommend calling the Endometriosis Association website. Their contact info is at the bottom of their homepage.
http://www.endometriosisassn.org/
I hope this helps you on the road to answers,
achilles2
oops that post was for the OP not soldy
hope everyone feels better soon!!!!!!!!! :)
hope everyone feels better soon!!!!!!!!! :)
hi what about MS? did they look for MS? also i just wanted to say u look like a model so pretty!!!!!!!
thanks for the suggestion soldy. i tried to, but it said the forum had received the maximum number of questions for the day.
hi, have you thought about arteritis (different to artheritis) or shingles?
I am not adoctor though this is just an idea
regards
I am not adoctor though this is just an idea
regards
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