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RebelMaven

Burning mouth syndrome

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RebelMaven

I have had Burning Mouth Syndrome for years and it is getting worse rapidly.  It is not so bad in the morning but by evening it is getting unbearable.  Nothing has changed in my meds or in my life except the passage of time.

 

The only relief I get is when eating, drinking ice water, or salt water rinsing but it only lasts for a few minutes.  I have researched this and I am assuming that the relief from the eating is the salt in the food and have read that the ice water could actually make it worse as it dilutes your biochemical buffers.

 

There are so many causes of this and it could be anything but I just need immediate relief because the diagnosis of this is almost impossible.  I realize that it is probably secondary to something else and the primary diagnosis should be found I don't think that anything will be found other than psychosomatic.

 

Is anyone else experiencing this and if so did you obtain a diagnosis and/or does anything help you?

 

Thanks.  I appreciate your input.

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alexjuice

I've never heard of this. Is it with you all the time, like between meals when you are not eating/drinking? Must you snack at all times?

 

Sounds terrible! Sorry to hear about this.

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rapunzel2

my sister has had this problem recently. she made food intolerance tests and figured out she's intolerant to milk products and garlic. now she leaves those out and we'll see if that helps...

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RebelMaven

I have no appetite at all and only eat one daily at night.  I have tried magnesium in the past and it worked great but I am so hypersensitized now to everything and just flipped from major depressive disorder to hypomanic (after drinking caffine for the first time in years-trigger?) so I am afraid to change anything.  I hear vitamin B12, sensodyne toothpaste, Rincinol mouth wash, and various other things have all been tried but again, with my hypersensitivity I am leary of trying new things.  The other night I took a Cepacol Max throat lozenge and it tastes like sh*t and only worked for about 30 minutes.  I'd like to try Rincinol but I keep spending money on things that don't work when I know the BMS is secondary to some other diagnosis most likely psychiatric in nature.

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alexjuice

Hmmmm. Have you had a b12 blood level check? Severely low b12 can cause nerve symptoms, conceivably like the burning you are describing. And if food allergies are a common factor for other people it'd be useful to eliminate the common food allergens for a month or two (gluten, dairy, nuts, eggs as well as sweets/fruit) to see if there is an effect. A doctor can check you b12 or you can order a bloodtest yourself at directlabs.

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alexjuice

I know the BMS is secondary to some other diagnosis

Most things are, IMO

 

 

 

most likely psychiatric in nature.

Psychiatric diagnoses are the definition of secondary diagnoses. Keep looking.

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RebelMaven

I have heard about B12 also.  I have taken omeprazole forever so my magnesium levels may be low.  I should try the magnesium again as it worked so well last time but, I'm waiting to see how I do with this new change in moods before I change anything else.  One other thing is that around the time my mouth burns the worst my feet also start tingling and my neck and shoulders start burning.  It got severe right before my last episode where I went from hypomanic to ultra manic last year.  Scary that it might be a signalment of things to come.  A doctor would put me back on Lyrica or gabapentin for this.  NO WAY!  That is what triggered my last ultra manic episode and a whole lot of other physical symptoms.

 

alexejice: "Psychiatric diagnoses are the definition of secondary diagnoses. Keep looking."  Can you elaborate on that please?  Are you referring to the medical intuitive type of diagnosis such as that the BMS is caused by an underlying psychological issue or that it is a primary physical diagnosis?  Keep looking where exactly?

 

Thanks

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Barbarannamated

My husband and brother both got severe foot tingling/stabs on Prozac. Just throwing this in in case it triggers any other clues to the puzzle.

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RebelMaven

And what a puzzle it is....

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alexjuice

I have heard about B12 also.  I have taken omeprazole forever so my magnesium levels may be low.  I should try the magnesium again as it worked so well last time but, I'm waiting to see how I do with this new change in moods before I change anything else.  One other thing is that around the time my mouth burns the worst my feet also start tingling and my neck and shoulders start burning.  It got severe right before my last episode where I went from hypomanic to ultra manic last year.  Scary that it might be a signalment of things to come.  A doctor would put me back on Lyrica or gabapentin for this.  NO WAY!  That is what triggered my last ultra manic episode and a whole lot of other physical symptoms.

 

alexejice: "Psychiatric diagnoses are the definition of secondary diagnoses. Keep looking."  Can you elaborate on that please?  Are you referring to the medical intuitive type of diagnosis such as that the BMS is caused by an underlying psychological issue or that it is a primary physical diagnosis?  Keep looking where exactly?

 

Thanks

PPIs can result in b12 deficiency. I would get your b12 checked. Or if you are unable to get it checked. Buy Max-B by Premier Research Labs and take 1 drop in water w/ meals. Premier's B is very effective at low doses due to the way it is manufactured. I recommend you buy here: http://www.qnlabs.com/store/index.php?main_page=product_info&products_id=53

 

Ultimately, it is important that your b12 adequate. Over 500 at a minimum.

 

Psychiatric diagnoses are IMO never first cause diagnoses. There is always something physiological underpinning 'anxiety' or 'bipolar' or whatever, and I'm not referring to a chemical imbalance. A good place to start is the Metametrix Ecology stool test which can be ordered by your doctor or you might have to buy it yourself.

 

Keep looking. Yes, you are going to have to find the problem and find someone who can fix it or fix it yourself.

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Altostrata

RM, it's odd you say "Nothing has changed in my meds or in my life except the passage of time" when you went off like 19 psychiatric drugs last year.

 

Yes, it could be due to a PPI. Are you still taking that? It may have depleted B12. This needs to be built up again. Taking B12 supplements might be too much stimulation for you, you may want to eat high-B12 foods instead, see http://www.healthaliciousness.com/articles/foods-high-in-vitamin-B12.php

 

If magnesium helped, you might want to take a fraction of a capsule, or sip magnesium citrate in water.

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RebelMaven

RM, it's odd you say "Nothing has changed in my meds or in my life except the passage of time" when you went off like 19 psychiatric drugs last year.

 

 

19?  It was not that many!  :lol: It was 3.  I just meant that the BMS had gone away and now returned with a vengeance and I can't see a specific trigger for its recurrence and escalation.  Unless being a come and go thing is normal.  I am just afraid it is a sign of mania coming back as that is what happened last time.

 

Thanks for the B12 advice and for the record, YES, I screwed up royally tapering off so many meds so fast and I should have listened to you and everyone else screaming at me not to do this But in that manic state you think that you are invincible and make horrible judgment calls and decisions.  Believe me, I have paid the price dearly for that rapid taper off multiple meds as I am sure you can imagine.  I go back and read my thread and I can clearly see how manic I was and that I was out of control. :(

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alexjuice

I think you should get your b12 checked and go from there.

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RebelMaven

I am trying an experiment today.  I have read that bruxism or having a tense jaw can also cause BMS.  I am on alprazolam 4mg a day but only really take 2.5mg SID at bedtime to help me sleep.  So today I took an alprazolam 0.5mg during the day to see if it might be being caused by benzodiazepine withdrawal because it is so short acting and I have been on it since 1990 and only take it SID or to see if it relaxes me enough to relieve jaw tension enough to decrease the burning in my mouth.

 

I have no intention of increasing my benzodiazepine addiction so I will only take 2mg tonight at bedtime.

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alexjuice

Also, I really think you'd be well served to get an evaluation for infectious pathogens. Being on that many drugs, in particular PPIs which are STRONGLY LINKED to increased prevalence of gut infections because of the suppression of stomach acid which is very important to immunity.

http://judyburgio.com/new-fda-warning-risk-of-infections-with-stomach-acid-blocker-drugs/

 

 

The latest FDA warning is associated with another risk associated with turning off the body’s natural process of stomach acid secretion. Practitioners like me who work with people to create optimal health, have identified this side effect for years but finally the FDA has caught on. Stomach acid production is required to maintain a healthy GI tract. It can protect us from invading microorganisms that cause infection by killing them. That includes disease-causing bacteria, parasites, and fungal infections including an overgrowth of candida albicans.

 

The FDA reviewed 28 observational studies and found the rate of infection caused by the bacterium Clostridium difficile (C Diff) is almost 3 times higher among people taking PPIs. What is C Diff? It’s associated with severe diarrhea and is very difficult to treat and can be life-threatening. It used to be exclusively associated with infections acquired in hospitals. Now, it’s commonly found in the community. And people can be infected by it just by swallowing it and it can be spread by poor hand-washing. Taking a PPI drug can increase the risk of acquiring this infection because it removes the body’s natural defense of stomach acid, which could kill it on contact.

 

Infections like this also can cause depleted b12. A severe b12 deficiency can result in lasting neurological damage. I recommend you have your b12 checked and order the stool test if you want to see what is wrong with you.

 

You're right about the medications and withdrawal affecting sense and discernment. For this reason I am repeating this advice.

 

Try to be proactive. Good luck.

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RebelMaven

I think you should get your b12 checked and go from there.

 

Well….technically I need a CBC, chemistry panel, thyroid function, estrogen/progesterone/testosterone level  test as well as B12 and probably a host of other things checked.

 

But with no health insurance, not being able to work, and waiting on my pending disability appeal,  I can’t afford to go to a doctor anymore or pay for lab work.  I get my psych meds from a county mental health center doctor who charges $18 a visit (she is a joke by the way…) and can only get generic prescriptions as that is all I can afford.  So I would have to just play Russian Roulette and try B12 and see what happens.

 

What dosage range should I start with?

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RebelMaven

Also, I really think you'd be well served to get an evaluation for infectious pathogens. Being on that many drugs, in particular PPIs which are STRONGLY LINKED to increased prevalence of gut infections because of the suppression of stomach acid which is very important to immunity.

http://judyburgio.com/new-fda-warning-risk-of-infections-with-stomach-acid-blocker-drugs/

 

 

The latest FDA warning is associated with another risk associated with turning off the body’s natural process of stomach acid secretion. Practitioners like me who work with people to create optimal health, have identified this side effect for years but finally the FDA has caught on. Stomach acid production is required to maintain a healthy GI tract. It can protect us from invading microorganisms that cause infection by killing them. That includes disease-causing bacteria, parasites, and fungal infections including an overgrowth of candida albicans.

 

The FDA reviewed 28 observational studies and found the rate of infection caused by the bacterium Clostridium difficile (C Diff) is almost 3 times higher among people taking PPIs. What is C Diff? It’s associated with severe diarrhea and is very difficult to treat and can be life-threatening. It used to be exclusively associated with infections acquired in hospitals. Now, it’s commonly found in the community. And people can be infected by it just by swallowing it and it can be spread by poor hand-washing. Taking a PPI drug can increase the risk of acquiring this infection because it removes the body’s natural defense of stomach acid, which could kill it on contact.

 

Infections like this also can cause depleted b12. A severe b12 deficiency can result in lasting neurological damage. I recommend you have your b12 checked and order the stool test if you want to see what is wrong with you.

 

 

This is why I take a probiotic every day that includes strains that are specifically targeted to helicobacter pylori.  Now that is a test I'd love to have but I am very hard to medicate with antibiotics.  How omeprazole got OTC is beyond me.  It is a seriously addictive drug and can do a lot of damage.  

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alexjuice

Honestly, if I were you I'd turn off my internet or sell some clothes and go buy a b12 test and a stool analysis. I don't know why you haven't thought of this. In any case, I've given you my advice so you can take it or not.

 

Good luck

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RebelMaven

Honestly, if I were you I'd turn off my internet or sell some clothes and go buy a b12 test and a stool analysis. I don't know why you haven't thought of this. In any case, I've given you my advice so you can take it or not.

 

Good luck

 

Thank you. I appreciate your advice.

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RebelMaven

I am sorry but having a B12 test is not an option for me at this time.

 

It would seem to me that I am B12 deficient based on my medications and that those medications may be causing the Peripheral Neuropathy and the Burning Mouth Syndrome.  I am planning to taper off of them one at a time very slowly so this proposed plan regarding B12 is for in the meantime to see if I can help with some of my symptoms so I am in less pain and can more coherently plan my Prozac taper.

 

From my research it appears correcting this B12 deficiency would involve doses of B12 ranging from 1,000mcg to 10,000mcg daily.  Some suggest starting out on a higher dose and then arriving at a maintenance dose.  It appears that the average time it takes until you would notice a difference after starting B12 is two weeks.  Obviously if I could have the B12 test and knew the severity of my deficiency it would be easier to determine the dosages. Also apparently overdosage is not a big concern with B12 but I don't think I would go higher than 5,000mcg a day before considering that it is not working.

 

It does concern me though that B12 is considered activating so I hope it does not exacerbate my symptoms instead.

 

As I am hypersensitized to everything now I took 250mcg tonight and will see if I have a reaction.  If not I will have to decide how much and how often to increase the dose or if I should do a “bolus” dose to start and if it works and then what the maintenance dose needs to be.

 

Any comments or suggestions would be appreciated.

 

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RebelMaven

The B12 may be to activating. 

 

My skin is on fire like a sunburn and my feet are tingling intensley.  My mouth hurts so bad that I can hardly talk.

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RebelMaven

Yes, it could be due to a PPI. Are you still taking that? It may have depleted B12. This needs to be built up again. Taking B12 supplements might be too much stimulation for you, you may want to eat high-B12 foods instead, see http://www.healthaliciousness.com/articles/foods-high-in-vitamin-B12.php

 

If magnesium helped, you might want to take a fraction of a capsule, or sip magnesium citrate in water.

 

It was my understanding that the amounts in those foods were so small that they would not be absorbed at all due to the omeprazole.  I already eat some of them but I would not mind trying your suggestion and adding a few more as it does seem the B12 supplement is pretty stimulating.  I could not come close to a dose as high as a supplement but you are right, I may not be able to handle the B12 in such a large dose. 

 

I can already see mself doing a liquid micro taper upwards on B12. 

 

On goes the paradox. :unsure:

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Altostrata

That is correct, as long as you are taking omeprazole it will block absorption of B12. You may recall I've repeatedly suggested you stop taking omeprazole, so let's not discuss this any more.

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RebelMaven

That is correct, as long as you are taking omeprazole it will block absorption of B12. You may recall I've repeatedly suggested you stop taking omeprazole, so let's not discuss this any more.

 

Yes you have but I can't stop taking everything at once or more than one drug at a time.  I don't need a variable in the equation like I did last time.  It has to be one at a time very slowly.  There are some other factors as to which one I have to stop first but I won't bother you with them. 

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Meimeiquest

If you decide to takes food or supplement, it may be more effective taken about 30 min. Before daily dose. When I worked with it, it was thought that gastric pH decreased significantly just before 24 hrs.

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Vonnegutjunky

Reviving this old thread as burning mouth is one of the most consistent symptoms that I have -

 

My waves begin with severe tinnitus, burning mouth and double vision, and I become physically incapacitated, depression and mild innerestlessness, I just sleep and sleep, I cannot function for days; I saw on a benzo buddies board that there is some theory that these are signs of cns damage; anyone else have this?

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Sheri755

Honestly, if I were you I'd turn off my internet or sell some clothes and go buy a b12 test and a stool analysis. I don't know why you haven't thought of this. In any case, I've given you my advice so you can take it or not.

 

Good luck

I also was just diagnosed with BMS. What type of stool test? What would one be looking for?

 

My B12 serum level is normal.

 

I'm just miserable with this.

 

Thank you!!

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Altostrata

Dr. David Healy suggests the sensation of burning in withdrawal might be related to sodium channels (one way cells communicate). Potassium counters sodium; for this reason, potassium supplements are used to calm the heart in situations of arrhythmia and sodium should be avoided.

 

If you have symptoms of burning, you might try potassium supplementation (and reduce sodium intake, such as in salt). In the US, potassium supplements are commonly available as 99mg, don't take more than this each day, you can overdose potassium.

 

Please post in this topic to report what effect this has on your symptoms of burning.

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badtummy
Posted (edited)

I also have this during my withdrawal from Paxil. 

I get relief from ubiquinol q10 and mastic gum. 

 

 

Edited by ChessieCat
name change note removed

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