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Light-headed spells, headaches, sore/stiff neck
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Light-headed spells, headaches, sore/stiff neck

I am hoping that someone can give me some advice.  I am a 29 year old female.  I live in a small town in Alabama.  I take no daily medications.  I have no previous health problems except for mild headaches every so often and my blood pressure is usually on the low side (which I have always thought was good) and a ruptured ovarian cyst a few years ago.  Sorry for the length of this but I thought that you probably need to hear it all.

Since the middle of August I have been having problems.  I went to the dentist to have my teeth cleaned and a few days later, the left side of my face started tingling (temple area, jaw, cheek, sometimes tongue).  A few days later, I began to have spells where I would feel like I was going to pass out and burning like sensations on the side of my head behind my ear area (not on my actual ear).  I went back to my dentist since years before he told me I probably have TMJ since my jaw always pops.  He felt of my jaw muscles and said that I probably have it and made me a bite plate.  He said that it looks like my jaw may deviate to one side when I open my mouth.  

I wore the bite plate for several weeks, and the symptoms continued in addition and frequent headaches, usually upon waking up.  (I have always had mild headaches but now these headache seem to begin in the back of my neck and go up the side of my head to my temple area, on either side and last a long time.  They can get pretty severe).  The weeks went by the end of September, my ears also started to hurt a little and feel stuffy. I went to a local clinic to have them checked and the nurse looked at them and said I had fluid on both my ears.  She gave me Allegra D 24 hour (she asked if I had allergies and I said no) , an anti-vertigo medicine (even though I told her the room doesn't spin I just feel like I'm going to pass out) and Naproxen.  I took the AllegraD and Naproxen for about four days (but not the anti-vertigo) medications.  I immediately got worse.  The left side of my head felt like it was ten sizes too big and my left arm started to tingle.  My face tingling had lessened though.  I went back to the clinic and the doctor looked in my ear and didn't see a lot of fluid and then did a tympanogram to check the pressure and said that I still had a lot of fluid on both of my ears.  He told me to stop taking all the medicines he had prescribed and made me an appointment for an MRI and to see a neurologist and thought it could be MS and to see an ENT about my ears.

About a week later, I got the brain MRI (normal).  I also went to the ENT in town.  He did a nasal swab and said I had a virus.  I had no fever or anything else that I thought would suggest one.  He gave me a prescription for Tamiflu and Decadron and Tyzine nasal spray and said to hold my nose and blow to pop my ears so air could get in there for it to dry.  I was confused because I thought Tamiflu was only for the flu but he said I didn't have the flu but he prescribes it for all types of viruses.  He said I had fluid in both my ears (in the middle ear).  

About three days later, I was extremely weak and felt like the room was going dark and my vision would blur a little.  The back of my neck and head felt numb and I felt nauseous.  My family got concerned and took me to the ER.  They did blood work and said my potassium was low and blood sugar was borderline.  The doctor there told me to stop the Tamiflu because I may be having side effects and that I never should have been given it in the first place & stop the nasal spray too but that I had to finish the Decadron since I already started it but that it is probably the cause of the low potassium and blood sugar. I was given a potassium pill prescription for a week.  She looked in my ears and said they looked great, no fluid.  And to follow up with a family doctor after I finish the Decadron for blood work to check the sugar.

I was finally able to see the neurologist who said my MRI of my brain was normal but she wanted to do an MRI with contrast of my cervical spine (normal).  She also ordered a nerve conduction test on my left arm and leg (normal),  EEG (normal), lots of blood work (normal, although my creatine was a little on the low side)

I went back to my ENT and he swabbed my nose and said that I now had bacteria.  I was given a week of Septra DS antibiotics and he did the tympanometry again and said I had still had fluid on my both my middle ears and because it was on my middle ear is the reason the ER doctor didn't see it.  I believed him because upon turning my head sometimes, I could feel something that felt like hot liquid in my ears moving around.  Meanwhile, I feel weak and give out easily doing normal tasks like climbing steps and vacuuming, etc.

Upon finding out that several of my family members had aneurysms (great grandmother, grandfather, two great aunts, great uncle), the neurologist ordered an intracranial MRA and vertebral MRA to check for that.  (Both were normal).

Last week, I went to an ear specialist in another city and upon hearing my symptoms said he said that I had cochlear hydrops which is a form of Meniere's' Disease.  He looked in my ears and said that my other ENT was wrong and that there was no way that I had fluid on my middle ear a week ago.  By now I am pretty skeptical of any of the ear doctors because my only symptoms was the light-headed spells and occasionally I can hear my pulse in my left ear when I lay on that side.  My blood pressure was 118/70 in the office and they asked if that was typical.  I said that is actually on the high side for me.  My blood pressure is usually around 100/60 and sometimes 90/50.  They gave me a prescription for a diuretic Maxzide and put me on a low sodium diet.

The next day was my appointment with the new family doctor to check my sugar levels.  I hadn't got the diuretic prescription filled yet but when I mentioned it to this doctor told me not to take it because my blood pressure was low enough and it didn't sound like Meniere's Disease to him anyway since I have no ringing in my ears or hearing loss.  He did blood work to check my heart, including a BNP, sugar levels, etc., (all came back normal).  I called the ear specialist and the nurse agreed that I shouldn't take the diuretic and to stick to the low sodium diet  She said that even with the pill, it would never completely go away anyway and it was something I would have to learn to live with.

Here are my current symptoms:
- Almost daily headaches that begin in the back of my neck, up the sides of my head, and temple. Some of them quite severe. (One day one side will hurt, and the next the other side may hurt).
- Sporadic burning sensations on the left side of my neck and top of my head and temple area.
- Spells throughout the day where I feel lightheaded. (Can happen anytime but always happens after eating and sometimes when defecating or looking up or down.)
- Neck and back of head feels stiff.
- Neck pops when turning head
- Jaw pops more often than normal.
- Small shooting pains on head behind ears upon turning head or looking in certain directions.
- Fatigued

My question is:
What should I do next?  What type of doctor do I need to see?  Is this just something I have to live with?  Could all of this be caused from TMJ?  Are there any definite tests to confirm TMJ?  Did the neurologists do all the correct tests to rule out unruptured aneurysms and AVMs?  Is there any tests that you would recommend to find out what could be causing this?
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11 Comments Post a Comment
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322973_tn?1239908038
Hi,
You have provided a detailed history!
An unruptured brain aneurysm would not be expected to cause these symptoms. Plus, all baseline tests for detecting these are normal.
TMJ (TemporoMandibular Joint) disorder can cause the jaw joint to be unstable. Theoritically, it can indeed result in most of your symptoms like headaches, facial pain and burning, ear stuffiness, neck stiffness and pain.
Spells of light headedness are unusual in TMJ.
There are no board-certified TMJ specialists, and most patients typically end up visiting (like you) dentists, ENT doctors, internists, maxillofacial surgeons, and neurologists.
I suggest you see an experienced internist, and have him examine you and review your reports.
I hope that helps!
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Avatar_n_tn
I have the same symptoms as you, feel like I've had every test possible.  Have you found any answers? Please help!
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Avatar_n_tn
I too have the same symptoms and was wondering if you have found anything out. This has been going on for a few years now, and I too have had all of the test, and still no answer. Please help if you can. I was told that it could be anxiety and stress (though I am NOT a depressed person) was the root of the problem. Have you heard anything about that?
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Avatar_n_tn
I have been suffering the exact same symptoms and I suspect that it is stress.  I just recently started feeling like this since I started working full time for the first time in my life.  
I personally have found if I get quite a bit of sleep 9-10 hours I feel alot better then the reccomended 6-8.  It might be worth a shot.  I think some people just need more sleep then others.  I hope this is the problem I'm too young to have anything serious, and am somewhat afraid to go to the doctors.  Also my vision is going a little but I think it has something to do with staring at a computer screen all day.
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Avatar_n_tn
Hi I injured my neck years ago and everyday now I deal with headaches ,and migrains. I can't rest because it is taking over my life.Why am I getting them now. At first when I hurt my neck which has bulged dics.I use to get few headaches. Why know and everyday too. Please can anyone help me. Allana
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Avatar_n_tn
I had similar problems several years ago and was referred by my dentist to a dental hospital where a stress test was carried out.  I did initially wonder why I was answering questions relating to stress (I thought I had been sent to the wrong place!) but it was explained that a lot of face pain e.g. burning, tingling, a feeling of bore holes in your head, shooting pains and numbness, to name a few, can start from high levels of stress.  I was under a huge amount of stress but didn't really realise it at the time and then had a car accident where I suffered whiplash and also broke a dental crown which became infected causing pain but because of my high stress levels my brain was unable to 'switch off' the pain messages even when the infection had been treated.  As you have had many tests, all negative, then perhaps the stress test would be useful.  It is possible that you do suffer from TMJ but if you are overly anxious or stressed about what is wrong with you then perhaps the pain caused by TMJ is not switching off and the pain/stress cycle goes round and round.  Anyway, my treatment was nortryptoline which is an antidepressant primarily but is also used to numb the pain messages/activity from the brain and is also used to treat trigeminal neuralgia.  The tablets took about a week to work and then I was pain free.  I had to continue with the tablets and gradually reduce the dosage over several months before coming off them altogether.  I hope that if you read this message your pain has been sorted but if not then my story may help you to look at an alternative for treatment.  
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Avatar_f_tn
hope you still check this site.  it sounds to me as though a lot of your symptoms and daily life (if this is still the case) is that you may have some type of autonomic failure - have had it and it seemed to go into remission but is now come back. I plan to fight it {tooth and nail). Most painful, annoying problems go along with this neurological syndrome. i will not call it a disease, as i don't know for a fact that it is a disease. the headache is often and agony in itself, and i cannot perform daily life as before; my workouts have gone downhill. Eating food gives me a headache, i wake up at night or have a terrible time going to sleep and then if i do get to sleep, only to wake up extremely early. Of course, i am tired all day. Then you get up and go thru it again the next day. All drs tell me to do is treat the symptoms. My bp used to be great: 120/80 and now am lucky if i have 90/70. i have to drink tons of water to try to elevate my bp. Also i am lucky when i am not having a bout of other annoying symptoms: exercise intolerance, sexual dysfunction and obstacle with sweating properly.  The worse thing is just not feeling like yourself and not having any energy. Let me know if you still check this: how are you doing.
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Avatar_m_tn
I know it is 2011 and most of the posts are two to four years old, but I hope people are still checking this site or even better have found resolution.  I have similar symptoms since 2007 when I was diagnosed with a spontaneous cerebral spinal fluid leak.  After seeing four doctors and no concurrence as to what my health issue was, a fifth doctor sent me to a neurologist who ordered an MRI with contrast of my brain and spine.  My brain MRI had findings indicating that I had a spinal fluid leak; however, they never found the source of the leak.  I do know that it was precipitated by a bout of sneezing and a runny nose.  The runny nose was more like a faucet for about three minutes and then it abruptly stopped.  I was in excruciating pain and very sick for about eight months.  As mysteriously/spontaneously as it happened it resolved spontaneously as well.  However, I am not the same.  I have many of the symptoms mentioned in the posts on this site.  Most of them are intermittent, but some are constant, such as numbness of my head.   I have other symptoms cropping up as well.  Perhaps, the repercussions are an autonomic failure or syndrome or a disease process.  I don't know.
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Avatar_m_tn
2012/05/27 I have been having the same symptoms (headache, stiff neck and light headedness) and decided to google them and this thread came up. For several years now I have been getting these bouts of Vertigo that occur just when I am waking and standing from rest. The vertigo would slowly get weaker and go away after about six weeks. After two ears, eyes and nose visits and a neurologist, it has been diagnosed as Benign Positional Vertigo. After cutting out salt, alcohol and caffeine (I know, what is there left to live for) I have found the best resolution is to simply cut back on stress. Unfortunately that is difficult to do in my career, but I have gone the distance to not work beyond my hours and recognize the signals my body gives me to just walk away. Aside from the occasional wisp, I have not had a bout of vertigo for about three years now. I still get the occasional stiffness in the neck and headache. I am not sure if it is associated. It almost appears it might be an allergy and suspect it might be to processed foods. Since the change in lifestyle, I have been eating pretty much everything home prepared. It seems I only get these headaches anymore after eating processed foods. Interesting thread though, I will be watching closer. -Keith
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Avatar_m_tn
Have any of you folks been tested for Herpes?? Herpes can present these types of symptoms. Viral loading can cause all types of viral related infections, especially when it follows the nerve endings. The nerves that pass behind the jaw in front of the ear , I think its the 5th through 7th cranial nerves which when affected by Herpes out break can cause all types of complications. then its gone. dental pain, jaw pain, ear pain, and on and on, get a blood test if positive take 800MG's of Generic Valtex daily for 5 day to 7 days and it should help resolve the issues, but its not a cure.
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Avatar_n_tn
It is interesting that nobody here can mention the "C" word - chiropractor

When the tests come in negative and thousands upon thousands of dollars have been spent, it is sadly rare for any doctor to recommend seeing a chiropractor for a couple of weeks just to see if it is a chiropractic problem.

Chiropractors are so low risk that their malpractice insurance costs less than your full coverage car insurance. Unfortunate not to try.

Upper cervical disturbances can, and do, cause many of the complaints listed above, including TMJ. I should know, I've been doing this for a quarter of a century.
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