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Burning mouth syndrome


RebelMaven

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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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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.

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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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...

in 2002- 0,5 tablet cipramil for half a year, ended it uneventfully. in 2006 - citalopram for half a year, ended in horrific state, ditched the drugs CT. 2007-2008 not feeling well but drug free. in 2008 prozac 20mg + quetiapine 25mg. 2009 tried to stop, ended up in hole after couple of months, started zoloft. 2009-2011 zoloft 50mg. went to 25mg in 2011 summer, it resulted in half a year horrible suffering. reinstated, changed drugs, nothing happened. by 2012 beginning suddenly felt great and CT meds. after 4 months came suddenly most horrible human suffering that's possible. was started on prozac and questiapine. started tapering slowly, GFCF diet and Hardy Nutritionals vitamins in 2013 summer. 

current medications: 1) fluoxetine and quetiapine since Aug 2012; 2) Daily Essential Nutrients by Hardy Nutritionals 7 capsules / since May 2013 + omega3; 3) Gluten-free-casein-free diet since june 2013

Started withdrawing slowly since april 2013. Mostly around 10% cuts. 

April'13 - March'14: fluoxetine 40mg -> 19,5mg; quetiapine 50mg -> 40mg
April'14-March'15: fluoxetine 19,5mg -> 14,4mg; quetiapine 40mg -> 22mg

April'15-March'16: fluoxetine 14,4mg -> 7,4mg; quetiapine 22mg -> 15mg

April'16-March'17: fluoxetine 7,4mg -> 5,0mg; quetiapine 15mg -> 7,25mg

April'17-March'18: fluoxetine 5,0mg -> 4,0mg; quetiapine 7,25mg -> 0 (as of 1st Feb 2018)!!!!

April´18-March´19: fluoxetine 4,0mg - > 2,3mg. Jumped off fluoxetine 1,4mg due to pregnancy in July 2019. Oct 2019 severe withdrawal syndrome started.

Took mistakenly a complex for hormonal support that included pregnenolone dec2019-april2020. Stopped it april 2020 and immediately severe akathisia started. Have had life threatening akathisia since, 100% disabled, suicidal, very hard to hold on. 

 

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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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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.

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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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.

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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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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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.

Pristiq tapered over 8 months ending Spring 2011 after 18 years of polydrugging that began w/Zoloft for fatigue/general malaise (not mood). CURRENT: 1mg Klonopin qhs (SSRI bruxism), 75mg trazodone qhs, various hormonesLitigation for 11 years for Work-related injury, settled 2004. Involuntary medical retirement in 2001 (age 39). 2012 - brain MRI showing diffuse, chronic cerebrovascular damage/demyelination possibly vasculitis/cerebritis. Dx w/autoimmune polyendocrine failure.<p>2013 - Dx w/CNS Sjogren's Lupus (FANA antibodies first appeared in 1997 but missed by doc).

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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.

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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  • Administrator

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.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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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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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.

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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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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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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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

"Well my ship's been split to splinters and it's sinking fast
I'm drowning in the poison, got no future, got no past
But my heart is not weary, it's light and it's free
I've got nothing but affection for all those who sailed with me.

Everybody's moving, if they ain't already there
Everybody's got to move somewhere
Stick with me baby, stick with me anyhow
Things should start to get interesting right about now."

- Zimmerman

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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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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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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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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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  • Administrator

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.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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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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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.

1st round Prozac 1989/90, clear depression symptoms. 2nd round Prozac started 1999 when admitted to dr. I was tired. Prozac pooped out, switch to Cymbalta 3/2006. Diagnosed with bipolar disorder due to mania 6/2006--then I was taken abruptly off Cymbalta and didn't know I had SSRI withdrawal. Lots of meds for my intractable "bipolar" symptoms.

Zyprexa started about 9/06, mostly 5mg. Tapered 4/12 through12/29/12

Wellbutrin. XL 300 mg started 1/07, tapered 1/18/13 through 7/8/13

Oxazepam mostly continuously since 6/06, 30mg since 12/12, tapered 1.17.14 through 8.26.15

11/06 Lithium 600mg twice daily, 2.2.14 400mg TID DIY liquid, 2.12.14 1150mg, 3.2.14 1100mg, 3.18.14 1075mg, 4/14 updose to 1100mg, 6.1.14 900 mg capsules 7.8.14 810mg, 8.17.14 725mg, 8.24.24 700mg...10.22.14 487.5mg, 3.9.15 475mg, 4.1.15 462.5mg 4.21.15 450mg 8.11.15 375mg, 11.28.15 362.5mg, back to 375mg four days later, 3.4.16 updose to 475 (too much going on to risk trouble)

9/4/13 Toprol-XL 25mg daily for sudden hypertension, tapered 11.12.13 through 5.3.14, last 10 days or so switched to atenolol

7.4.14 Started Walsh Protocol

56 years old

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  • 1 year later...

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?

 

*Currently at 8.2-8.5 mg of my 10mg pill of Paxil (they actually weigh 12.5mg) 

january 2023 I began reducing my med again. I was a 9mg weight for years, I went to 8.9 in January, went to 8.6mg in February, and in March 2023 I went down to 8.5-8.2 mg ( my scale varies, so I stick within that .3 range because of that) 

*No other supplements or vitamins 

*Taper schedule in the pdf 

Blank.pdf

 

https://docs.google.com/document/d/1-5vShtJtwAOGA30OxIP87steLmMdFzD29F0fzAPD564

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  • 1 year later...

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!!

Effexor XR 300 (brand) mg & various SSRIs 15 yrs (Effexor XR 300 mg past 10 yrs

Clonazepam, 1.0 mg. am, .5 mg pm. - 15 yrs, 7-17-16- Began .5 three times a day

Vyvanse 60 mg, - 2 yrs, Cut to 50 mg for 6 mths, Cut to 30 mg. on 4-1-16. Tapering.

Approx. 4-1-15 began Effexor XR 300 taper, very slowly for a year. Held at 37.5 for about 3 mths. Cut to 18 mg for 2 wks to 0. WD began 2 wks later. Depression, anxiety, paranoia, low appetite, nausea.

7-14-16-Reinstated 5 beads Effx after 4 mths misery.Pooped out 10 days.

9-12-16-to present- Wide eyed terror, bedridden fear, no appetite/feeling of being full.

10-30-16- Began 15% liquid tapering of 30 mg Vyvanse. (25 mg)

11-13-16- Liquid Vyvanse 22 mg,11-27-16- Liquid 15 mg, 12-12-16- Vyvanse 12.5 for 5 days. 12-16 - 12-29, 15 mg.

11-20-16- Switched back to 1.0 clonazepam am & .5 bedtime

12-30-16- Moved to 15 mg COMPOUNDED Vyvanse.Current 4/11-4/25 7.5 mg.(10% ev 2 wks) Off Vyvanse

Current meds:Effexor XR- 3 Beads, Clonazepam-1.0 mg am, .5 mg bedtime,Vyvanse-(tapering) Estradiol- 2

mg,Progesterone 200 mg,Testosterone 30 mg/ml,Nature Throid- 48.75 mg.(12-21-16-65 mg.) (4-18-17-81.25 mg) Current supplements: Fish Oil-1360 mg, Curamin- 2706 mg.

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  • 10 months later...
  • Administrator

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.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • 1 year later...

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

2007  paroxetine 10 mg
2016 aug  paroxetine taper down to sep/oct 2016.

2017 July reinstate paroxetine 

2017 aug taper down paroxetine again.

 

Hydroxyzine 25 mg when needed, like one every other week.

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  • ChessieCat changed the title to Burning mouth syndrome
  • 1 year later...

Hi all, I’ve posted about this elsewhere and thought I would add my own experience.

 

BMS can be brought on by many things, one of which is xerostomia, commonly called dry mouth.  Many drugs (and most AD’s) can cause dry mouth.  According to an ENT I saw at Penn, the two drugs I am taking, amitriptyline and clonazepam, are probably causing this.   The amitriptyline in particular is an anticholinergic and he has seen this issue even with low doses.  He also said the effects on the mucus membranes are cumulative over time,  and so symptoms eventually worsen even at a constant dose.  He told me my vocal cords have thinned as a result and recommended vocal therapy when I am ready.

 

When I first did a quick taper of 10 mg. of amitriptyline, my mouth suddenly became very moist and it seemed like the burning mouth went away.  Before that I never even noticed my mouth being dry.  I was so ecstatic, until the wd symptoms started kicking in.  I lasted six weeks before reinstating.  The burning mouth came back ten times worse.

 

I have tapered from 10 mg. to 3.7 mg., and sometimes a week after dropping the dose I will feel my mouth improve for a day or so.  So I get a little hope from that.  But otherwise the burning seems to be worse than ever, and the tissues of my mouth and throat are so painful and dry, eating and talking are hard.  I can really only point to the drug doing this.  I did not have it nearly that bad before the first amitriptyline taper, but I have also been on it much longer now.
 
I also saw at least one study that concluded amitriptyline is neurotoxic.  
 

I hope this may be helpful to anyone dealing with this terrible symptom.  Hugs to anyone who can relate ...

Started .25 mg. clonazapam Oct. 2016

Started 10 mg. Celexa Dec. 2016

Started 10 mg. amitriptyline January 2017

Also took 60 mg. Dexilant Oct. 2016 through April 2017, successfully tapered off

Stopped Celexa successfully Oct. 2017

Fast taper of amitriptyline Dec. 2017, had major WD symptoms and reinstated at 10 mg. Jan. 2018

Slow amitryptyline taper started Mar. 2019, reduced from 10 mg. to 0.93 mg. currently

Also still taking .25 mg. clonazapam daily in late evening

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  • 1 year later...
  • Mentor

Well I’m glad I found this thread ! Thanks to All that posted above! Rare symptom!
 

I have just developed BMS about 5 weeks ago. ENT Dr. diagnosed this. I am currently investigating. It usually gets worse as the day goes by.  There are some days and weeks it goes away. It appears to be related to what I eat and drink. 
Short background- I took Prilosec for a few years due to Prozac se. Stopped 6 months ago. I will check my lab report as soon as I can. 
And Currently  I have dry mouth, dry sinuses, and dry eyes as side effect from lexapro and as I taper it can be mild or severe. I know this dryness does goes away from other tapering experiences on Paxil years ago. 
 

Altostrata Your post about David Healy and sodium channels very interesting! I am currently noticing heavy salted foods are increasing burning mouth. 
 

More details on my intro. I will report here when I acquire more info. 

2000-2013 Paxil - 1 year fast taper

2013-2018 merry go round
zoloft, cymbalta, lamictal, Prozac.

 Nov. 2018 lexapro 15 mgs, Dec. 2019 to Mar. 2020 taper to 10mg. Jul 2020 to October 2020 taper to 8.5 ml.
Oct 2020 reinstated to 9 ml.
Apr 2021 to Jul  taper to 7ml. Oct 2021 to Jan 2022 taper to 5.9ml, Mar 5 2022 5.8 ml, Mar 12 5.7ml, Mar 20 5.6ml, Mar 27 5.5ml, April 23 5.4ml, April 30 5.3ml, May 7 5.2ml,  Jul 9 2022 5.4ml, 

Klonopin prn, Allegra 180 for 3 seasons, aspirin 81 mg, plavix , nitroglycerin 0.4 mg prn, 2k mg  turmeric Qunol, 4- Trader Joe’s omega 3 -2400 mg, Pepcid 20mg,  Prilosec 40 mg, Tylenol arthritis 4 tablets daily, 350mg calm magnesium citrate, melatonin 2.5- 5mg as needed to sleep. Saline spray as needed. 

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2000-2013 Paxil - 1 year fast taper

2013-2018 merry go round
zoloft, cymbalta, lamictal, Prozac.

 Nov. 2018 lexapro 15 mgs, Dec. 2019 to Mar. 2020 taper to 10mg. Jul 2020 to October 2020 taper to 8.5 ml.
Oct 2020 reinstated to 9 ml.
Apr 2021 to Jul  taper to 7ml. Oct 2021 to Jan 2022 taper to 5.9ml, Mar 5 2022 5.8 ml, Mar 12 5.7ml, Mar 20 5.6ml, Mar 27 5.5ml, April 23 5.4ml, April 30 5.3ml, May 7 5.2ml,  Jul 9 2022 5.4ml, 

Klonopin prn, Allegra 180 for 3 seasons, aspirin 81 mg, plavix , nitroglycerin 0.4 mg prn, 2k mg  turmeric Qunol, 4- Trader Joe’s omega 3 -2400 mg, Pepcid 20mg,  Prilosec 40 mg, Tylenol arthritis 4 tablets daily, 350mg calm magnesium citrate, melatonin 2.5- 5mg as needed to sleep. Saline spray as needed. 

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  • 1 month later...

I have had this symptom. It's better now. 

In my case it was appeased by dietary interventions. I cannot say whether gut issues were the cause, but managing food alleviated the pain and discomfort entirely. 

1996-2018 - misc. polypharmacy, incl. SSRIs, SNRIs, neuroleptics, lithium, benzos, stimulants, antihistamines, etc. (approx. 30+ drugs)

2012-2018 - 10mg lexapro/escitalopram (20mg?)    Jan. 2018 - 10mg -> 5mg, then from 5mg -> 2.5mg, then 0mg  -->  July 2018 - 0mg

2017(?)-2020 - vyvanse/lisdexamfetamine 60-70mg    2020-2021 - 70mg down to 0mg  -->  July 2021 - 0mg

March-April 2021 - vortioxetine 5-10mg (approx. 7 weeks total; CT)  -->  April 28th, 2021 - 0mg

supplements: magnesium powder (dissolved in water) as needed throughout the day; 1 tsp fish oil w/ morning meal; 2mg melatonin 

August 1, 2022 - 1 mg melatonin

 

Courage is fear that has said its prayers.  - Karle Wilson Baker

love and justice are not two. without inner change, there can be no outer change; without collective change, no change matters.  - Rev. angel Kyodo williams

Holding multiple truths. Knowing that everyone has their own accurate view of the way things are.  - text on homemade banner at Afiya house

 

I am not a medical professional; this is not medical advice. 

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22 hours ago, Ariel said:

I have had this symptom. It's better now. 

In my case it was appeased by dietary interventions. I cannot say whether gut issues were the cause, but managing food alleviated the pain and discomfort entirely. 


Hi Ariel, what dietary interventions helped you?

Xanax 0.4mg on and off only for bedtime occasionally from 2015

2019.6 Xanax Inter-dose withdraw after 8 weeks continuous usage 

2019.6.3 100mg Zoloft

2019.6.27 CT 0.4mg Xanax cross over to 7.14mg Valium 75mg Trazodone

2019.8.29 Jumped Valium at 0.5mg

2019.12.15 Jumped Zoloft at 4mg

2020.1.4 Jumped Trazodone at 5mg

2020.6.1 95% healed with no symptoms and sleep very well

2021.4.6 Reinstated 1mg Zoloft and 10mg x3 Tandospirone for anxiety setback from antibiotics 2021.4.25 0.5mg Zoloft and 10mg x3 Tandospirone 2021.5.7 Jumped Zoloft at 0.25mg as adverse effects 2021.6.2Tapered and jumped Tandospirone as mild serotonin syndrome Couldn’t take Seremind (Lavender oil) neither it could also cause the serotonin syndrome 2021.6.13 1mg Cyproheptadine before bed and got better and better 2021.8.13 Bad wave don’t know if triggered by chocolate ice cream

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Hi @Shashal

 

I eat a simple, bland, whole-foods diet. Basically my meals consist of homemade bone broth (or meat stock) with lightly cooked or steamed vegetables, and a bit of meat. For meat I mostly eat offal (organ meat), fish, and eggs. All organic; biodynamic when available. Mild seasoning using salt, pepper, sometimes apple cider vinegar. I follow low-FODMAP guidelines. I drink boiled water.

 

Eliminated: sugar, dairy, gluten, grains (incl. pseudo-grains), peanuts, nightshades, fruit, vegetable oils and other processed foods, caffeine, alcohol, nicotine, artificial sweeteners, pork, shellfish, tea, herbal infusion. 

 

I can eat small amounts of organic, raw nuts that I have prepared myself. They must be soaked 8-12 hours in lukewarm salt water, then thoroughly dried at low temperature.

 

Currently it's pollen season, and since I've got pollen allergies, I am particularly mindful around my vegetable and nut intake. There are many vegetables, nuts, and fruit (I no longer eat fruit, but including it here in case other people do) which can cause reactions in pollen allergy sufferers. These cross-reactions can occur year-round but are usually more likely during pollen season. In my case the cross-reactivity is barely noticeable outside of pollen season but at this time of year my sensitivity increases. I manage this via portion control as well as being extra selective about intake. I also track pollen levels using an app and monitor myself for signs of systemic agitation, activation, or fatigue. For example, when certain pollen varieties peak I tend to avoid nuts entirely. I also accept that this is just how it is in the springtime. 

 

No doubt it's a pretty restrictive diet. It's been this way for a couple of years. I figured it out along the way via trial and error. It works for me in withdrawal. As long as it helps with symptom management I'm grateful. 

 

My "vice" is coconut. I tolerate it in small quantities, but when I do eat it I have difficulty limiting myself because it's so delicious! 

 

 

 

1996-2018 - misc. polypharmacy, incl. SSRIs, SNRIs, neuroleptics, lithium, benzos, stimulants, antihistamines, etc. (approx. 30+ drugs)

2012-2018 - 10mg lexapro/escitalopram (20mg?)    Jan. 2018 - 10mg -> 5mg, then from 5mg -> 2.5mg, then 0mg  -->  July 2018 - 0mg

2017(?)-2020 - vyvanse/lisdexamfetamine 60-70mg    2020-2021 - 70mg down to 0mg  -->  July 2021 - 0mg

March-April 2021 - vortioxetine 5-10mg (approx. 7 weeks total; CT)  -->  April 28th, 2021 - 0mg

supplements: magnesium powder (dissolved in water) as needed throughout the day; 1 tsp fish oil w/ morning meal; 2mg melatonin 

August 1, 2022 - 1 mg melatonin

 

Courage is fear that has said its prayers.  - Karle Wilson Baker

love and justice are not two. without inner change, there can be no outer change; without collective change, no change matters.  - Rev. angel Kyodo williams

Holding multiple truths. Knowing that everyone has their own accurate view of the way things are.  - text on homemade banner at Afiya house

 

I am not a medical professional; this is not medical advice. 

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  • 2 weeks later...

wow @Ariel, that are very useful tips but I think it’s very hard to keep following, I think I can try some :) I love coconut water🤪 

 

Thank you Ariel

Xanax 0.4mg on and off only for bedtime occasionally from 2015

2019.6 Xanax Inter-dose withdraw after 8 weeks continuous usage 

2019.6.3 100mg Zoloft

2019.6.27 CT 0.4mg Xanax cross over to 7.14mg Valium 75mg Trazodone

2019.8.29 Jumped Valium at 0.5mg

2019.12.15 Jumped Zoloft at 4mg

2020.1.4 Jumped Trazodone at 5mg

2020.6.1 95% healed with no symptoms and sleep very well

2021.4.6 Reinstated 1mg Zoloft and 10mg x3 Tandospirone for anxiety setback from antibiotics 2021.4.25 0.5mg Zoloft and 10mg x3 Tandospirone 2021.5.7 Jumped Zoloft at 0.25mg as adverse effects 2021.6.2Tapered and jumped Tandospirone as mild serotonin syndrome Couldn’t take Seremind (Lavender oil) neither it could also cause the serotonin syndrome 2021.6.13 1mg Cyproheptadine before bed and got better and better 2021.8.13 Bad wave don’t know if triggered by chocolate ice cream

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