Losing the Battle

On New Year's Day 2009 I woke up with ringing in the ears. The ringing was high pitched like an old tube TV---the pitch that I would hear after being exposed to loud sounds but always goes away in a few hours. That ringing over the years has escalated to a solid low tone in the left ear and a telephone ring in the right. A few years ago I began feeling headache and swelling of the face, ear and eyes. This too, has escalated to intolerable pain. I have difficulty focusing on tasks, balance and memory. I have been making many mistakes at work and I am facing losing my job. I have been diagnosed with major depression and have been on antidepressants for years. It is only with great effort that I can get through a day being normal, and now I am getting too tired to fight it anymore.

I have seen several general practitioners and ENT specialists, and have had several CT scans and MRIs. No diagnosis or cause has been found. My head aches 24 hours a day, ears ring loudly, and painful swelling surrounds my face and eyes---something is terrible wrong, but there is no diagnosis. Nothing can be seen. Every waking moment is torturous, and I'm getting too weak to go on. I am ready to find a solution or succumb to whatever is ailing me. Any insight will be greatly appreciated.

 

@Sutherland
I am so sorry to hear of your struggles. Things sound truly awful for you and to not have a diagnosis must be distressing.
I honestly don't know what this could be, but wanted to reach out and offer you support.
I do know of someone else on this forum who has several other health struggles and has to actively seek out her own treatments. It shouldn't be this way, but it is in some cases.
Have you found anything that helps ease the pain and the swelling? Do anti-inflammatories or pain killers help? I know this is just a band aid, but a little relief gives you the hope to keep fighting.
Do you have support in family or friends?
I'm tagging @DebInAustralia who experiences migraine like headaches, she may have some ideas.
Take care and stay in touch.
Sam.

 

@Sutherland Have any of care providers considered facial nerves. Your tests would have noted a mastoid infection, but not facial nerves and fibers. If you research facial nerves then you'll find that it connects to all that you posted.

There's also treatments that may include Botox. Testing for this has to be done by one or a couple of the following:
Tear Test, ENG, Nerve Excitability Test, ENoG.

This could or not be your problem, but I ask your doctors for their thoughts.

 

Welcome to the forum and sorry to hear your sufferings. It is frustrating that the medical people can't find the diagnosis. You would think that adding all the symptoms together in a google search will help them find a likely cause. Tinnitus alone can't cause these swelling and pain. It can be one of the autoimmune diseases. Try look up this one: Cogan’s Syndrome
https://en.wikipedia.org/wiki/Cogan_syndrome

It seems to have quite a bit of the symptoms you have. If you also have blurred vision problem, then look up this one:
https://nei.nih.gov/health/iih/intracranial

You may want to look up symptoms for lyme disease too.
You can also look up for sites which allow you to enter your symptoms and they may come out with possible problems causing the symptoms, such as this one:

https://symptomchecker.isabelhealthcare.com/suggest_diagnoses_advanced/landing_page

I am no doctor so it is advisable you consult more doctors for 2nd opinions. Good luck. Take care. God bless.

 

Get checked for Lyme.
The standard ELISA test is pretty much useless, as it mostly comes back negative...find someone in your area who is doing the Vega testing...it's non invasive and very accurate.
The so called medical "professionals" are mostly just bunch of parrots with rather surfacy knowledge, whom are just repeating certain learned phrases and whom are mostly trained to prescribe pills.
These people treat the symptoms instead of the actual cause (there are always some exceptions of course, but they are few and far in between)...most of them lack empathy and do not care to get to the bottom of things.
Not to mention there is more money to be made by big pharma in just treating symptoms, rather than to cure the actual problem...
This is how the health care model is set up...sad but true.

Search for a good naturopath with good reviews, preferably someone who is using the Bicon technology (Bioresonance)
Good luck to you...report back?


P.S: The Vega machine can also test you for allergies...just in case that's what it is.

 

I sympathesise with you.

I subject Sam to my ongoing misery because of the impact of chronic illness and daily, all day headaches. Needless to say, a support network is vital.

The most frustrating thing about headaches is there is no escape from them. Unlike a sore toe that you can rest, pain in the head is very difficult to ignore. When my pain is bothersome, it affects my cognition, balance, focus, memory etc too. I worry about this affecting my job and getting everyday tasks done.

Losing hope of recovery, depression and anxiety then starts to creep in.

You havent given us much to go on.

ie: type of headache, severity, does it radiate, what does it feel like, what makes it better/worse? other symptoms ie neck pain etc? Other health conditions?

and: investigations, assessments, outcomes?

As you are probably aware, there are so many causes of headache. Here are some ideas (particularly with the facial pain, I would strongly suggest you look into chronic sinusitis and dental causes)

. dental check?

. trigeminal neuralgia?

. sinusitis? (infections can hide ie borrelia/coinfections) I agree. get tested for stealth infections. if you want info on where to go to do this, inbox me.

. have you had a neuro consult? head mri?

. Is this autoimmune? have you had some autoimmune markers checked?

Some things to try: (Bear in mind, I dont know what is wrong with you)

Pain:
. Magnesium - headache is a deficiency symptom
. Filtered water - dehydration will cause headaches
. liver support (congested liver detox pathways will give you headaches)
. gut support (stay regular - magnesium will help this)
. gut flora (healthy gut microbiome = healthy body)
. massage/spinal adjustments = osteopathy/cranial sacral therapy/hypnotherapy
. Heat packs/infrared lamps
. PEA (palmitoylethanolamide) - a naturally occuring anti inflammatory that you can have compounded without a script
. LDN (low dose naltrexone) - immune modulator in low doses/can dial down pain states. You will need a script for this one.
. Distraction/ do something fun even if you dont feel like it
. acupuncture/traditional chinese herbs
. alternating hot and cold showers - tweaks immune response

Fatigue:
. support adrenals ie ashwaganda/ginseng
. mitochondrial support (ie ATP fuel)
. early nights
. take breaks in between tasks

Depression:

. review your meds. you may need a different one or a different dose

. consider natural alternatives ie tryptophan

Please get back to us with more information. I know how it feels to be in constant pain. There is hope. Dont give up looking for root causes.

 

Here's a checklist for Lyme. It you don't have Lyme disease then look at facial nerve disorders. Both match all your conditions and both also relate to tinnitus 50% of the time, but Lyme will have more emphasis as to where you live and had lived.

https://lymediseaseassociation.org/images/NewDirectory/Resources/DrB_SymptomList2005Pdf.pdf

 

Thank you all for replying.

Most of you have suggested Lyme's Disease. As an avid outdoors person, this is very possible. However, I have never had to pull a tick off of myself and I have had several doxycycline administrations over the past few years.

Over-the-counter anti-inflammatory drugs do little beyond being a placebo.

My headache is persistent and constant, centrally located directly behind the face. It is not pulsatile. Some days it gets subtly worse and I cannot connect anything to it. A lot of my symptoms feel nasal and ear-related. What goes on behind the eye? I believe that possibly the nose and eustachian tube are at the center of my problems and that the ENT specialist I just visited twice should have saw something.

The tests that I've had over the years: CT scan of sinuses, MRI brain, another CT scan of the head, blood work, twice (whatever "blood work" is), two hearing tests, a nasal endoscopy, and Wisdom teeth removed.

Assessments: allergies, chronic sinuitus, moderate obstructed sleep apnea, thickening of the sinuses

Therapy: CPAP (five months), psychological counselling, exercise, HEPA air purifier, sinus rinses

Drugs: doxycycline and other antibiotics, every over-the-counter NSAID, Citalopram( several years), Tyrosin, fluticasone nasal spray, Claritin, Zyrtec, Benydrile, and every over-the-counter antihistamine, multivitamins, lipo flafinoid, ear drops.

There are many other things that I have tried over the years and have since forgotten. As you can see, I have spent a lot of time and money searching for answers to my problems. Up until these terrible symptoms, every physical and mental problem that I have had in my life was simply diagnosed and remedied.

I am also very frustrated with medical professionals and the amounts that they charge. I hardly want to make this a social issue, but it is very difficult for me to afford to pay the amount for each service rendered---most of which no diagnosis was made---while medical doctors are highly compensated. I just want to say that I believe that it is unethical to make a lucrative profession out of another person's poor health and that it is a critical problem of the time that we live in.

I am looking into everything above that is new to me. Thank you for your help and I post any results that I find.

 

@Sutherland I can relate to most of your ailments as I also have them. Headaches, swelling of the face and eyes. Mine is from dental whiplash that also involves the cervical spine and muscles.

As @DebInAustralia mentioned it could relate to sinusitis, autoimmune input, trigeminal or dental - good points.

It appears that there's otalgia. Do you have a sore throat or feeling of swollen glands? Is there soreness in your neck? Soreness around the SCM muscles of the neck?

The key may be low tone in left ear and telephone ring in right. This might also relate as to which ear has the most hearing loss. That could be caused by any of the above, but it seems that there's more than one interaction which may include something else.

Just a guess, It could be dental, aggressive mouth and tongue movement and/or infection in mouth and or mastoid. This could also be causing a back and forth reaction with your SCM muscles. Maybe included is autoimmune. This is most discussed with case histories, but a sore throat is almost always included.

I hope that you can find physical reasons as I understand how difficult it is and what you are going thru. I could barely type this message, but my heart goes out to you.

Updated? Do you have a burning tongue and mouth? If so with a sore throat, then facial starts to appear after what is discussed above. Dental would be of one concern that also may include grinding of teeth on one side.

Try using some ice chips, but don't chew on them. Let them melt inside your mouth. A cool compress to your face and under your eyes and on other areas where there's pain. Place a cool moist cloth on neck. If this makes the slightest difference then it's the mouth and maybe added tense neck muscles. Foods or drinks with acid should be avoided.