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Old 03-06-2012, 12:53 PM   #1
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help! earfullness/face numbness/headaches/neck pain for over a year!been to many docs

I am a 24 year old woman, and was perfectly healthy until last March! I am able to function for the most part, but have discomfort daily. It has become extremely frustrating and I cannot believe I am still struggling to figure out what is wrong. It has definitely taken a toll on me! Any suggestions or anything would be much appreciated. It is quite long and in depth..sorry about that..but I felt like I needed to include as much information as possible. Thanks again for any help! Also I have been a nanny for the past two years for a now 2 and 5 year old. I do a lot of lifting of them and running around for obvious reasons. I like to work out although have slowed down a bit. I try to go to the gym a few times a week. I swam for about six months prior to this all happening, after symptoms began I have not swam since. Symptoms began after about eight months of working with them. I plan to go back to graduate school this fall and truly hope I am feeling better.

Current symptoms:

~ Ear fullness in right ear(this has been consistent for the past year and not subsided) . When I swallow I feel/hear a crackling like noise, but it never feels as though it fully pops. When I open mouth wide I sometimes hear a click. Feels like something needs to be pulled out.

~ feeling of numbness/swollenness on right side of face/under eye/cheek area(I can still feel pressure and move it, but feels almost the way it feels after get Novocain) – started about 3 months after ear fullness- has been going on ever since, some days worse than other

~feeling of pressure in head

~headaches almost daily/they tend to feel sinuslike. Neurologist bumped up my Zoloft prescription to help with the headaches, I take it at night, and it seems as though that has helped me not wake up with a headache like I had been, but I almost always get a headache at some point in the day/usually at night

~neck pain/tightness – this started about 6 months ago, xrays and physical exam show that my neck muscles are in spasm, neurologist currently has me seeing a physical therapist to try and work it out and see if there is any relation to my ear/face/headache problems. Feels extremely tight on side of neck, back of head, behind ear. Many times have issues sleeping comfortable. I have completely avoided sleeping on my stomach and have tried to get a firm pillow that gives my neck more stability. Many times feels as though my neck is being very strained and not supported by my head.

_ I do not really experience dizziness like I had at first.

Medicines I am currently on:

Zoloft 75 mg(I have been on this for about 4 years) ,for most of time was at 50 mg, neurologist recently bumped it up to 75 to help with headaches.

Loestrin24- took this from march 2011- july 2011, then started taking this again this October 2011.

Muscle relaxants (as of a month ago, prescribed by neurologist)

imitrex- take when needed for bad headaches, usually few times a week, just prescribed this a month ago

TIMELINE OF SYMPTOMS:

**March, 2011-I noticed a dizziness/offness, thought it may have been my vision. (noticed this while swimming) A week later I came down with a fever and sore throat.(March 20thish) Was extremely exhausted all the time. Tested positive for strep(rapid strep test). Took antibiotics(10 days of amoxicillin) and my throat felt much better, but my ear fullness,dizziness, and exhaustion did not.Also experienced sinus-like headaches. I went back (end of March) and had it checked out again, they said my ear appeared completely clear and therefore took a blood test for mono. Tested positive for Mono/EPV. Said was most likely all related to the mono, and symptoms would go away in a few weeks.

**April: Weeks later(mid-April) went back to primary because ear fullness had not improved at all- tested positive for lyme and he put me on 30 days of antibiotics.- 100 mg of doxycyline 2x/day.(end of may into june). My ear felt no better after these 30 days. Headaches were almost daily for this month. Mainly at night time. Took multiple tests for lyme over the months of June-August, and the conclusion by 2 infectious disease doctors was that I had EPV/mono but did not have lyme – it was a false positive. My Sed rates were raised in the blood tests taken in june/july.

**August 2011 went to an infectious disease doctor who specialized in lyme disease- he ruled out lyme disease- felt it was a false positive, put me on prednisone, prednisone did not help at all , in fact I felt worse that week. Stopped taking it after a week. Got a MRI of my sinuses to rule out sinusits, sinusitis was ruled out.
My ears were checked out by multiple doctors(3 ENT’s) and all concluded there is no infection and they are very clear. Did mri of inner ear and ruled out acoustic neuroma.
Started nasal sprays(doctor felt it could possibly be allergy related)
Neurologists have checked done MRI of neck & head, all clear. They have done catscan of sinuses, clear as well. Xray of neck showed muscle spasm(2 mos ago)
Neurologist thought it was migraines, and tried putting me on topomax, topomax made me EXTREMLEY dizzy and tired and therefore I discontinued taking it after three days.

**September 2011- went to chiropractor and TMJ specialist. Chiropractor concluded that there was pressure built on the right side of my ear/neck causing the pain…not sure how accurate this information was. I have not gone back to the chiropractor.
TMJ specialists took tests and concluded that I did in fact have TMJ and my bite was off causing the issues on the right side of my head. I went to another dentist to get a 2nd opinion, he said that my muscles were in fact in spasm, so I decided to start treatment with the TMJ specialists.
Started TMJ treatments5 mos ago.(once a week for an hour) Doctor believes that is the problem and what is causing my ear fullness/face numbness, but is perplexed as to why the therapy doesn’t seem to be improving my ear. I continue to go to the therapy once a week. They made me a mouth guard to wear at night to prevent me from clenching. I have gone to this for the past five months and the doctors seems to be very perplexed as to why there is no improvement in my ear. He was sure that my ear fullness would go away in 10-12 sessions( and we are well past that). He said that my bite is perfect..he is clearly perplexed.I do not wear the mouth guard anymore because I saw no improvement with it after 3 months and it always needs to be adjusted therefore usually does not fit well and is uncomfortable to wear.

**January 2012- starting seeing new neurologist- she did more bloodwork to completely rule out any sort of rheumatological disease. Bumped my Zoloft up to 75 mg and had me take at night to try and see if helped with headaches. Has me going to physical therapy 3X/week. (started PT about 4 weeks ago), also wants me to go to acupuncture- I will be doing this this week.

During the time I first noticed that I was dizzy, lethargic I had been working out and swimming a lot. After getting sick in March I completely stopped swimming. I would do freestyle stroke in which I was moving my head to the left to breath constantly.

I have gone to FAR too many doctors, and am beyond frustrated. Thank you for reading and any insight would be very much appreciated!!

 
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Old 03-13-2012, 11:47 AM   #2
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Talking Re: help! earfullness/face numbness/headaches/neck pain for over a year!been to many

Hi I have Tmj too There Are some things That might Help
Drink lots of water,vitimins magnesium helps its a muscle relaxer.
Stress will bring it on big time.
I have it slightly comes And goes.
take care

 
Old 03-13-2012, 10:15 PM   #3
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Re: help! earfullness/face numbness/headaches/neck pain for over a year!been to many

Your symptoms are almost exactly the same as what I had. It took me many tries to find the right combination of specialists to get me the appropriate treatment to help with my TMJD.

I'm certainly no expert, but based upon my experiences and research, I'll share what I learned:

-Many dentists treat TMJ. Very few truly understand TMJD and have the proper training to really do a good job treating it well. A dentist can say they treat TMJD even with just a few hours of training. It took me a couple tries to find a dentist who really understand what I needed. You really should have a Functional Orthodontist who has additional training in TMJD, neuromuscular dentistry, orofacial pain, etc... The thing about TMJD is that you need to find a solution which puts your bite into proper positioning. You are looking for someone who really understands the function of the jaw and how it interacts with whole body health.
-It takes a multi-prong approach for treatment to be effective. I found out the splint I'd worn for years that cost lots of $$$ and was custom made by my dentist was actually putting my jaw in an incorrect position and making things worse. You need to make sure you have a properly fit lower mandibular repositioning splint to get your bite in a good place. Getting your lower jaw in a more forward positioning will pull it away from your ear. At this point the spasming is so bad though that it will take a while for your mouth to be happy having that splint in place. I found a good PT who gently worked my neck, worked on my body alignment and did neck/shoulder and orofacial trigger point releases. This was a critical piece of my treatment. It is hard to find people trained in doing the orofacial trigger point releases (where they actually put their hand in your mouth) and in the beginning the releases on the masseter and pterygoid hurt intensly, but over time they made all the difference int he world for helping relieve my tightness and spasming.

It sounds like maybe you are on the right track for what you are trying but maybe you haven't found the right combination of specialists to help. I know it did take me several tries. I even went to one TMJ specialist who had a practice of 100% TMJ treatment and was a university professor who made me a splint that made things much worse. He wasn't right for me. When I finally found the specialist I'm currently seeing I was finally able to see there was a light somewhere at the end of the tunnel.

I'm about 2 years into treatment with my current specialist. It took me about 6 months to get some relief, but that was with my repositioning splint and getting regular trigger point releases. I'm currently about 6 months into Phase II of my treatment.

One thing my orthodontist did which I think made all the difference in the world for me was to make me a custom night splint. This splint was an upper one and placed my bite in a correct position but it had a wedge on the front that came behind my lower teeth and kept me from having my lower jaw fall back while I was sleeping. I think it went a long way towards helping me with my ear issues.

I have a lot of posts on the TMJ board so you can see much of my story. I'd be happy to answer any questions you may have.

Good luck,
MountainReader
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Asthma, Allergies, severe LPR/GERD, TMJD, Hearing Loss, Ulnar Impaction Syndrome, Shoulder Impingement, Plantar Fasciitis, DeQuervains, Hypermobility, possible Ehlers Danlos Syndrome

 
Old 07-13-2012, 02:26 PM   #4
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rachel315 HB User
Re: help! earfullness/face numbness/headaches/neck pain for over a year!been to many

Thanks for the responses! I went to another TMJ/orafacial pain dentist who seems to believe while I have the symptoms associated with TMJ, it is not caused by a bit problem or grinding, especially considering I do not experience the worst symptoms in the morning.. So, I think my condition has got everyone perplexed and unfortunately even with the physical therapy that is geared toward orafacial pain I am not seeing any improvement.
The docs most recent belief is that it could be referred pain from my neck muscles- but there has been no change in ear fullness/face fullness since going(and it has now been about 4-5 mos)...

frustrated....

 
Old 10-18-2012, 06:49 PM   #5
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Re: help! earfullness/face numbness/headaches/neck pain for over a year!been to many

Rachel,

I have what seems to be, the exact same symptoms and i have two little ones i chase day after day. I have had many tests and going for a few more shortly in hopes i will have my answer.. Its been a long time i have had this and i am ready for answers and relief and the road to healing. Did you find any relief or what may have caused your issues. hope all is well.

Last edited by Administrator; 11-21-2012 at 03:13 AM.

 
Old 11-20-2012, 11:25 PM   #6
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preciousdaiy HB User
Re: help! earfullness/face numbness/headaches/neck pain for over a year!been to many

I am going through the same thing right now! I am so tired of my right ear popping and crackling! Tonight I am trying somax a muscle relaxer this was recomended by my 3rd ent specialist who swears I have to have tmj because every other test shows fine, no ear infections, no fluid in the ears, etc..i'm doing acupuncture, diet change, and chiropractor nothing yet I'm going on 2 months now but feels like longer and I cant focus on anything other than this ear thing. My family is tired of me complaining ..dentist made me a night guard 4 days ago, it makes things worse my face hurts when I wake up. Please keep me up to date and let me know if anything helps with your ear and I will do the same.

 
Old 11-22-2012, 05:12 AM   #7
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Re: help! earfullness/face numbness/headaches/neck pain for over a year!been to many

Hi. Were lyme co-infections checked out? I have the right ear pressure and numbness feeling in right face and has also moved to right lip and tongue is affected, as well as speech. I was positive Lyme and Co. have had eye problems, joint problems, neuro issues. I also was positive mold. Were you tested with Igenex for Lyme?

 
Old 11-25-2012, 09:50 PM   #8
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Re: help! earfullness/face numbness/headaches/neck pain for over a year!been to many

Oh my goodness no i was not tested for any of that. I am calling my doctor tomorrow. Is it a specific test for mold? Is it was an allergy specialislt? Okay test for lyme and mold. It is for sure not getting any better as I type this my ears is going crazy popping ...oh then the ringing will start when I put my head down on the pillow ..no numbing of the face but my face does hurt in the morning ...

 
Old 11-26-2012, 03:56 AM   #9
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Re: help! earfullness/face numbness/headaches/neck pain for over a year!been to many

I would suggest you go to a LLMD and get tested with Igenex Labs for Lyme and see what they say about co-infections. They may be able to run tests for mold as well.

In the meantime, i would highly suggest that you research lyme and steroids before taking any more steroids. I also had neck stiffness, and apparently that was one of the co-infections for me. I am sorry you have been to many docs without a conclusion. I know that is rough. I will pray for you today.....my journey has not been fun, but I am confident God is directing and will heal in His time.

Last edited by moderator2; 11-26-2012 at 03:39 PM. Reason: posted disallowed website

 
Old 01-18-2013, 10:44 AM   #10
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Re: help! earfullness/face numbness/headaches/neck pain for over a year!been to many

hi not sure if i can help but i've had tmj for 7yrs now. i suffer with stuffy ears and i have had an orthotic for 7yrs also which didn't help my ears. a few years ago i went to physio and discovered when they worked on my sternomastoid muscle in my neck my ears popped really clear so not sure if its trigger points or not,but you should google that muscle as it can have alot of symptoms your discribing.hope this helps keep me posted as i'm always looking for new info because the drs look at me like i'm crazy with the symptoms i have.

 
Old 01-18-2013, 12:36 PM   #11
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Re: help! earfullness/face numbness/headaches/neck pain for over a year!been to many

Quote:
Originally Posted by angel2062 View Post
hi not sure if i can help but i've had tmj for 7yrs now. i suffer with stuffy ears and i have had an orthotic for 7yrs also which didn't help my ears. a few years ago i went to physio and discovered when they worked on my sternomastoid muscle in my neck my ears popped really clear so not sure if its trigger points or not,but you should google that muscle as it can have alot of symptoms your discribing.hope this helps keep me posted as i'm always looking for new info because the drs look at me like i'm crazy with the symptoms i have.
a physio? is that like a physical therapist? What do you mean they worked on you? like stretching or massage?? this is so interesting. I wonder if this could help me! I need to try this. What doctor do I call?? thank you so much I will keep you posted.

 
Old 01-18-2013, 02:07 PM   #12
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Re: help! earfullness/face numbness/headaches/neck pain for over a year!been to many

yes a physiotherapist. i found when they stretched my neck it felt great and also forgot to mention i have laser on those muscles it really works. i only needed a refferal from my family dr but not all physio offices have the laser(which is just light but wow does it work). if you can't find a physiotherapist with laser i seen a personal laser online for around $200 expensive but if it works it's worth it. the laser is a dual laser with infrared and red light. the infrared goes in pretty deep releives inflammation/pain anyway try googling the dual red and infrared light to get some more info. hope this helps

Last edited by moderator2; 01-18-2013 at 06:37 PM.

 
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