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I have suffered from a sore throat since 12/2015. I spent 6

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months being told it was...
I have suffered from a sore throat since 12/2015. I spent 6 months being told it was acid reflux. After many tests and procedures, drastic dietary modifications (when I was already eating healthy) and dramatic weight loss (when my bmi was only 19 to begin with), it was determined I actually have some sort of neuropathy or neuralgia.
During this time I also had a root canal and since this was done, I have had additional pain along the side of my tongue. The root canal was performed in April/May, and the final crown was placed at the beginning of June. This is when the tongue pain started. They have removed the crown, but after 3 weeks there has been no improvement. I have seen two dentists and two oral surgeons and no one can find anything wrong with me so they are saying this is part of the neuropathy/neuralgia I am already dealing with.
The problem is, I have been to three neurologists and no one knows how to treat me. I've had two MRIs: one of the soft tissues of my head and neck and one of ,y brain. Nothing appears to be wrong with me.
I have been on amitriptyline 50mg at night since May. It hasn't seemed to do anything except maybe help me sleep.
I have been on gabapentin since July. I increased to 1200mg (300mg 4x/day), but if I go farther I have horrible ringing in my ears and vertigo. I have not noticed any significant pain reduction from the gabapentin.
Two things have given my symptomatic relief of my pain, but they are not practical:
1. When I was having work done on my tooth. My dentis would numb the area. This caused my throat and tongue to not be in any pain, even though I could feel normal sensations (except of course, half my face was numb)
2. I was prescribed lorazepam for my MRIs and also fir anxiety. If I take 0.5 - 1mg per day (depending on pain levels), it can reduce my pain by at least 80% if not completely. Since this is a controlled substance, I have been told I should not take it regularly.
I am very frustrated. I am in pain all day, everyday if I don't take Ativan. I have reduced stress significantly in my life, but have not noticed any improvement in my symptoms. I also exercise and practice yoga regularly. I eat very healthy and have been tested for vitamin deficiencies and anemia. All tests say I am perfectly healthy, but I am completely miserable. Every doctor I see says they are so sorry about my symptoms but that they don't know Joe to help me. So I keep getting passed along - referred from doctor to doctor. I don't know what to do. I need some ideas on what could be causing this, or what can be done to treat this. Please.
Also, just for the record, I have already seen the following doctors:
ENT (6 -- each ENT referred me to another one; includes one famous ENT who treats acid reflux and LPR)
GI (two)
Allergist (one; allergy testing was negative)
Psychiatrist (regular sessions every six weeks)
Psychologist (weekly therapy - ongoing for three years)
Dentists (2)/endodontist (1)/oral surgeons (2)
Neurologists (3, including a neurologist specializing in pain management)
Acupuncturist
Chiropractor
Submitted: 1 year ago.Category: Neurology
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Answered in 18 minutes by:
9/21/2016
Neurologist: Dr. David, Board Certified MD replied 1 year ago
Dr. David
Dr. David, Board Certified MD
Category: Neurology
Satisfied Customers: 47,150
Experience: Experienced physician in Neurology
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Hello, this is Dr. David. I am reviewing your question now and will be with you momentarily.

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Neurologist: Dr. David, Board Certified MD replied 1 year ago

I bet you have a neuropathy of the glossopharyngeal cranial nerve which receives input from general and special sensory fibers in the back of the throat

The glossopharyngeal nerve has five components: branchial motor, visceral motor, visceral sensory, general sensory, and special sensory components.

that is good that ativan can help

it is a controlled substance, but if you are having chronic pain in the area, you may need it chronically.

you can ask for a 3 tesla thin slice MRI scan of the skull base with contrast to follow the glossopharyngeal nerve to see if there is an area of impingement or inflammation which is causing neuropathy.

3 tesla MRI scans are higher definition than 1.5 regular MRI scans

have you had a 3 tesla MRI scan so far of the skull base?

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Customer reply replied 1 year ago
I don't think so. If 3 tesla would have to be specified, I don't believe I did. Can you tell me what would cause this type of neuralgia? Also, I was told that glossopharyngeal neuralgia produces shock like pain in episodes, but my pain is constant...could it still be that? And if it is, can anything be done to treat/fix it?
Neurologist: Dr. David, Board Certified MD replied 1 year ago

a pinched part of the glossopharyngeal nerve could cause your pain and neuralgia.

it could also cause constant pain.

do you have excessive anxiety symptoms? this can cause constant throat pressure and pain and throat tension which can be alleviated by ativan and benzo medications.

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Customer reply replied 1 year ago
I have anxiety. It is generally under control though. I have been in therapy for years and in the past six months I have significantly reduced my anxiety, but it has not helped the pain. I don't feel that the Ativan helps my anxiety (except at the dose of 1.5mg which I took for my MRIs), but perhaps on some level it does.If the glossopharyngeal nerve is pinched, can it be fixed?
Customer reply replied 1 year ago
I'm relatively young so I would prefer a surgical option or something vs staying on medication forever. But I will do anything to stop being in pain...
Neurologist: Dr. David, Board Certified MD replied 1 year ago

that is good yo have reduce the anxiety.

if you have anxiety symptoms, the ativan can help decrease anxiety

patients who have anxiety can often have lump in the throat, tight throat, tight throat pain symptoms.

I'm glad you are seeing a psychiatrist every 6 weeks.

have you tried other anxiety medications like sertraline, paroxetine, fluoxetine? wellbutrin? effexor?

hydroxyzine? buspirone?

I'm not sure if surgery will help fix your problem.

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Customer reply replied 1 year ago
My throat pain is not like a lump or tight throat. It is painful directly in the back of my mouth. Sometimes it feels like I am coming down with a cold when I am not, and other times it is a burning or throbbing feeling that takes over my whole head. the elavil (amitriptyline) that I take is a tricyclics depressant tea at significantly reduced my anxiety...
Customer reply replied 1 year ago
But also, I have suffered from anxiety for over a decade. I've managed it with talk therapy, cognitive behavioral therapy, exercise, etc. I have been through terrible periods of anxiety, but never experienced symptoms like this before.If it is the glossy pharyngeal nerve, should the gabapentin be helping? Is there another medication I should try instead?
Neurologist: Dr. David, Board Certified MD replied 1 year ago

yes, the gabapentin could be helping if it is a neuropathy of the glossopharyngeal nerve.

gabapentin and lyrica and amitriptyline are the best medications to help with neuropathy nerve pain.

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Customer reply replied 1 year ago
Okay. I guess this doesn't really tell me anything new then. I'm already on 2/3 of these medications and they're not helping my pain. My pain is at least a 5-7 on a scale of 1-10. This is no way to live and my pain is not being managed. I know I can try lyrica, but my understanding is that lyrica is very similar to gabapentin and gabapentin isn't helping me. Amitriotylime helps my anxiety but does nothing for my pain. Thank you anyway.
Neurologist: Dr. David, Board Certified MD replied 1 year ago

I think you need better treatments for your anxiety symptoms

you should ask about clonazepam or diazepam which are longer acting versions of ativan

you should ask about hydroxyzine which can help decrease your anxiety symptoms

and I bet decreasing anxiety symptoms will help your throat pain relax and decrease pain.

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Customer reply replied 1 year ago
I appreciate the insight, but first - no doctor (neurologists nor primary care doctor) has been willing to prescribe Valium or klonopin (I have asked) long term. They don't even like that I am taking Ativan at all. My primary care doctor told me it is not an option to take a be so long term (even though I have no history of addiction, ever).Second, I have been in constant pain all day, every day, since the end of 2015. The symptoms started out of nowhere and have persisted regardless of whether I was experiencing a lot of stress or not. I've gone on two extended vacations with absolutely no stress, but I was still in pain.I don't discount that anxiety plays a role, but I'm not living day to day with anxiety. I am living with pain that seems untreatable without benzodiazepines, and where I live (Manhattan), no doctor wants to write a recurring prescription for them. So, if I'm going to have relief from this, it seems like I need to try something else, but no one will tell me what to take instead that could actually help. I have tried muscle relaxers and antihistamines (including hydroxine for one month in April when I saw the allergist), but haven't seen an improvement in my pain at all.
Customer reply replied 1 year ago
In the first Paragraph it should read "my primary care doctor told me it is not an option to take a benzo long term"
Neurologist: Dr. David, Board Certified MD replied 1 year ago

doesn't your psychiatrist understand you have anxiety symptoms and that the ativan is helping with your throat pain symptoms?

who is prescribing you ativan at this point?

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Neurologist: Dr. David, Board Certified MD replied 1 year ago

have you tried buspirone?

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Customer reply replied 1 year ago
The psychiatrist is. But she does not wNt to be responsible for my pain management. She prescribes Ativan for anxiety. I've told her it helps with my pain, but she said to ask my primary care or neurologist about kronor in or Valium. She does not think the pain is related to anxiety...
Customer reply replied 1 year ago
I have not taken buspirone. I can ask my psychiatrist about that
Neurologist: Dr. David, Board Certified MD replied 1 year ago

I suspect your throat pain is related to anxiety.

even if you don't have anxiety symptoms, you can still have tension in your throat which can cause pain.

this throat pain and throat tension is very common in patients who have excessive anxiety symptoms.

I respectfully ***** ***** your psychiatrist

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Neurologist: Dr. D. Love, Doctor replied 1 year ago
Dr. D. Love
Dr. D. Love, Doctor
Category: Neurology
Satisfied Customers: 18,891
Experience: Family Physician for 10 years; Hospital Medical Director for 10 years.
Verified

The system says that you have requested a new expert.

I am sorry that you are having so many problems, and while there are no easy or direct solutions to your symptoms, I have a couple of comments that may be able to help.

There are also a couple of other medicines that can be considered for relief of the pain, including carbamazepine (another type of anticonvulsant) or duloxetine (another type of antidepressant). Since the carbamazepine is in a different class than the gabapentin and the duloxetine is in a different class than the amitriptyline, these other medicines may work when the previous medicines did not. Each of these medicines can relieve chronic pain from a variety of different causes, so may help even when the specific cause is difficult to determine.

There is an option to clarify whether this pain is related to the glossopharyngeal nerve, which is to perform a nerve block of that nerve. An initial injection with numbing medicine can determine whether the symptoms are relieved, and if so, a longer acting block can be considered, such as with phenol or alcohol. These injections are usually done by anesthesiologists, including anesthesiologists that specialize in pain management injections.

If numbing medicines relieve the pain, but the nerve block is unsuccessful, then surgery on the glossopharyngeal nerve may be considered, such as a neurotomy.

If I can provide any clarification, please let me know.

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Dr. D. Love
Dr. D. Love
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