ATN questions. xx

General General TN & GPN (Old Site)
41

I will look this up-- What is one more thing to worry about? LOL. We have a geneticist in a town close to the one I'm in, but he didn't even know how to check for cystic in the grandchild of a woman that lives near us.... He had to call out of state- and I suspect cystic fibrosis is more common than this- but I will surely look it up. Thank you.

Ashbet said:

I'm lidocaine-insensitive, but Carbocaine and Marcaine work on me. FWIW, lidocaine insensitivity does occur in the general population, but it's more common (as is TN) among people with a connective-tissue disorder called Ehlers-Danlos Syndrome.

(Not trying to give you anything extra to worry about, but if you have other EDS symptoms, it might be worth investigating the possibility. Doesn't sound like you'd have much luck getting to see a geneticist in your situation anyway, so it's just something to keep in mind to investigate online if you can. I don't run into a lot of non-EDS lidocaine-insensitive people, but I talk to a lot of EDS people, so my sample is a little skewed!)

Thank you for the info on the cream! :)

42

As I keep bumping up the Neurontin- the "pointed" tooth is slowly settling down-- I am up to 900 mg now..... How much do most people take? with TN? I actually noticed it y'day afternoon.... So, maybe, this is a good sign... xx



beekeeper said:

I will look this up-- What is one more thing to worry about? LOL. We have a geneticist in a town close to the one I'm in, but he didn't even know how to check for cystic in the grandchild of a woman that lives near us.... He had to call out of state- and I suspect cystic fibrosis is more common than this- but I will surely look it up. Thank you.

Ashbet said:

I'm lidocaine-insensitive, but Carbocaine and Marcaine work on me. FWIW, lidocaine insensitivity does occur in the general population, but it's more common (as is TN) among people with a connective-tissue disorder called Ehlers-Danlos Syndrome.

(Not trying to give you anything extra to worry about, but if you have other EDS symptoms, it might be worth investigating the possibility. Doesn't sound like you'd have much luck getting to see a geneticist in your situation anyway, so it's just something to keep in mind to investigate online if you can. I don't run into a lot of non-EDS lidocaine-insensitive people, but I talk to a lot of EDS people, so my sample is a little skewed!)

Thank you for the info on the cream! :)

43

I posted this reply under another comment... ugh. I noticed y'day afternoon that the pain in my "pointed" tooth (don't know the official name) is dying down a bit..... I think this may be a good sign. I am up to 300 mg Gabapentin- but not sure what most TN patients take... mg wise of this drug to totally - or almost totally - stop the pain... fingers crossed.

Cleo said:

You wouldn't need a crown unless your natural crown is beyond saving. To be safe I would find out what kind of medicinal packing agent was used. I would not let a general dentist do a root canal. I would go to a Endo who has more training in endodontics than the general dentist.


beekeeper said:

I have questions about this teeth business. I suppose the biggest is- the root canal was done in January. It has been x-rayed multiple times- They all say it is normal. It is the tooth beside it that presented w/ pain to begin w/ but when they did the tapping it was the tooth beside it that caused all the pain. (primary left molar) So- I went in w/ the frontal left "pointed" tooth hurting- but the tooth beside it HURT when was tapped and got the root canal. The "pointed" tooth still hurt and has MINOR gum recession. When I saw the endodontist and he did an x-ray of this tooth - it looked FINE. Both teeth look fine when x-rayed... but the -- I don't know the clinical name of this tooth- "pointed" tooth hurts all the time- and presents w/ pressure too-- up into my nasal area.

Before doing a root canal on this tooth, he wanted to give it some time to settle down -- . He leaves that medicinal packing in for ONE MONTH. The idiot who did my other root canal left it in a week. I could barely tolerate the week-- it was so nasty it made me sick to my stomach. I am wondering- couldn't a crown be done???

I have read SOOOO much about osteomylitis-- I DONT WANT THAT--- but I don't know what to do at this point in regards to my teeth. I really don't. I majored in literature--- not teeth....... I feel like a dog chasing it's tail......

If the neuro will order an MRI-- rule out infection in my face-- then I will get the root canal-- but not until then......

I am truly beginning to wonder if I will ever have any quality of life back at all now.

I also have cognitive issues.... If indeed it was THIS TOOTH that needed this root canal-- God only knows how long it's needed it. It has not showed in x-rays if it does need one. The gum b/t these two teeth look a tad swollen to me-- but not to any of the dentists I have seen. I have seen 3 dentists and one endodontist....... so that is how it has played out thus far.....

What would you do?

beekeeper.....



Cleo said:

Gum recession is a good indicator that infection has spread beyond the tooth. Infection left untreated is what causes abcess. The only choice other than root canal is extraction. Seems like since your other post xray of the other root canaled tooth shows nothing abnormal then it must be fine or they would not hesitate to do a second root canal, apiceo or extraction....

44

I looked up that book last night on Amazon.... It is really pricey!! All of the TN books are through the roof! I thought I would get a couple of copies- one for me- one for the neuro--- but right now, I can't swing the price of that book-- hopefully next month! It would be nice to have! Once, a family doctor I had thought I had FMF-- and I bought a very expensive book on this- and didn't even have this disease... :P --- Since the neurontin is helping some-- I feel a tiny bit better about this situation...... I may phone the neuro today to see just how high I can take this drug before I see him on the third. Thank you for the info on this book. Hope to get it soon.

Deej said:

I have pressure like you talk about but sometimes it feels like it's my whole head! That's why I was so hard to diagnose. I always feel pressure in my ear and the right side of my face but sometimes it just feels like it's everywhere. When it's behind my eye it's the worst - makes me nauseated. So your symptoms have alot of similarities to mine, Except when I had it in my teeth it would bounce around all over in there so I never thought I had a bad tooth. I couldn't pinpoint a tooth that hurt - it was just everywhere. I don't have it there now as long as I stay on my meds.

And yes, it can definitely be in all three branches at the same time. That's how mine has always been.

I was lucky that my family doctor was willing to prescribe Tegretol to me and that worked right away. I am now on Trileptal (the generic which is too hard to spell) because the side effects were too tough to take on Tegretol.

After I asked to swtich to another type of meds, he sent me to a neurologist that was very young and inexperineced. I'm sure she had never seen a patient with ATN. She didn't agree I had ATN but knew I had something going on with nerves since Tegretol worked. I later asked her what she thought it was and she decided it was ATN then. I had told her about this site and the book "Striking Back". I think she checked into them because she seemed to know alot more than she did previously. Or maybe she found another neurologist to ask. It stinks when you have to educate your neurologist.

Read everything you can and defnitely get the book Striking Back. It has taught me so much!! When I was first diagnosed I read the face pain info page here and all the discussions I could so I could understand more about this. I also joined the ATN group since I pretty much diagnosed myself with that. Do as much reading as you possibly can in between laying in bed or on the couch.

By the way, at night I don't ever lay on my back and I lay almost upright in bed with 5 pillows propping me up. I always lay with my bad side up. This REALLY helps!

It took LOTS of experimenting with timeframe to take meds, foods to eat (very few carbs) and how to lie down before I got this down to keep as many of my symptoms at bay as I could. Good luck!!

45

Hi Beekeeper

Price for Striking back is "normal" on Barnes and Noble..... Looks like Amazon doesn't have it in stock, so the resellers are asking a ton.

http://www.barnesandnoble.com/w/striking-back-weigel/1019230842?ean=9780967239323

46

Thank you so much, Joe!!!! I looked last night- and I think that book was like 70 dollars?!?! I had planned to buy 2 copies- but mom said- the doctor would probably just throw the copy I bought him into the trash---...... I certainly appreciate this!!!

Beekeeper xx

JoeE said:

Hi Beekeeper

Price for Striking back is "normal" on Barnes and Noble..... Looks like Amazon doesn't have it in stock, so the resellers are asking a ton.

http://www.barnesandnoble.com/w/striking-back-weigel/1019230842?ean...

47

I had several root canaled teeth removed due to infection. I agree that if a root canaled tooth is infected for a long time it affects the bone..And having a dentist scrape the infection out may cause nerve upset, which I think happened to me..I had 6 root canals and during the last year I have had 4 removed...I recently had my three amalgam fillings removed also..But I'm not sure it has helped my pain...I am still taking amitriptyline...There is a nerve forum where there is a dental assistant that believes no one should ever get a root canal since the tooth is always infected since the dentist cant reach into all the tiny tubules and get out all the infection.She also believes that.it causes a lot of other problems in the body. It is very interesting. Thank you for the info...

Shawnamohana said:

Hey Beekeeper and everyone, I find your information on this thread so interesting. I haven't been around for a bit, I have found other information that has led me down a different path. I would like to share just some things to research and read about. I don't mean to offend anyone, if you do not agree with any of it you should certainly not go in this direction but I feel the more information we can get the better and then we have to weed out the info for what pertains to us. I have been reading about problems with root canal infections, bone cavitations and mercury poisoning from amalgam fillings. I think that this has been my root cause all along. I am going to a biological dentist with a good reputation(good idea to research this) in June. I guess I will find out if this is the problem. I any of you read about this stuff and find any of it makes sense as to your own situation, please let me know so we can share information.

p.s. I still have no TN pain(pain along the trigeminal nerve line, branch 3) since doing mckenzie therapy exercises that pushed the bulging disc back into place in my neck taking pressure off the nerve. You can read about it on my page if you are interested.

I wish you luck and will pray for you all. I know together we can find the answers.

48

Dear Ashbet -

Reading this post caused me to go digging through my anesthesia textbooks to read up about Ehlers-Danlos (I am a CRNA). Did not remember that it is an inherited syndrome, although the incidence is about 1 in 5000 people affected. I certainly hope that you do not have type-IV, which is associated with high risk d/t vascular & cardia complications.

My interest was piqued because of your Lidocaine (aka Xylocaine) issue. Lidocaine is an amide type local anesthetic, which means it is cleared by the liver, like most other drugs.Carbocaine (mepivicaine) & Marcaine (bupivacaine) are also amide anesthetics. Carbocaine and Lidocaine have the same relative potency (2) but carbocaine has a slightly longer duration of action. Marcaine has the hightest relative potency (8) and also the longest duration of action. So now my scientific curiosity has me on a quest to figure out why there is a lidocaine insensitivity with EDS. This is a good thing for me today, since my TN has been screaming since I got up and brushed my teeth this morning :(

Hope you are having a better day :)


Ashbet said:

I'm lidocaine-insensitive, but Carbocaine and Marcaine work on me. FWIW, lidocaine insensitivity does occur in the general population, but it's more common (as is TN) among people with a connective-tissue disorder called Ehlers-Danlos Syndrome.

(Not trying to give you anything extra to worry about, but if you have other EDS symptoms, it might be worth investigating the possibility. Doesn't sound like you'd have much luck getting to see a geneticist in your situation anyway, so it's just something to keep in mind to investigate online if you can. I don't run into a lot of non-EDS lidocaine-insensitive people, but I talk to a lot of EDS people, so my sample is a little skewed!)

Thank you for the info on the cream! :)

49

The book (and others specific to TN) is also available of theFacial Pain Assn website.

http://www.fpa-support.org/tna-store-2/

There is also an excellent link for finding doctors to help you.

beekeeper said:

Thank you so much, Joe!!!! I looked last night- and I think that book was like 70 dollars?!?! I had planned to buy 2 copies- but mom said- the doctor would probably just throw the copy I bought him into the trash---...... I certainly appreciate this!!!

Beekeeper xx

JoeE said:

Hi Beekeeper

Price for Striking back is "normal" on Barnes and Noble..... Looks like Amazon doesn't have it in stock, so the resellers are asking a ton.

http://www.barnesandnoble.com/w/striking-back-weigel/1019230842?ean...

50


OMG!! That is truly a nightmare!! There is much new information regarding neuralgia problems that occur after dental/oral surgery procedures. Please check out the Facial Pain Assn website and joining is free :)

http://www.fpa-support.org/


Damaged by Sargenti Paste R/C said:

You can get TN from a dental problem. TN often is used to mean neuralgia on the nerves of the trigeminal branch. It does not say what the reason is. It is more frequently used to describe a condition where a blood vessel is pressing on a nerve that is causing the pain. that IS NOT the problem when it is from a dental procedure.


It is possible that there was an additional canal in the root canaled tooth that was missed. I don't think you can see it on the xray. I think they only see it when they take the cap off of the tooth. If you haven't already, see an endo and have that tooth checked. DO NOT LET A GENERAL DENTIST DO A ROOT CANAL, MOST ESPECIALLY IF IT IS A BACK MOLAR.

The material that was used on me, Sargenti Paste (aka N2, RC2B, RC2W, and many other things to hide the guilty), can cause delayed problems after a root canal, including recurrent sinus infections. The freaks that use this, take a powder mixture which contains 4.5% paraformaldehyde (which I believe is much more toxic than liquid formaldehyde) and they mix it with a liquid...sometimes peanut oil (errr...no one asked me if I was deathly allergic to peanuts. Thankfully, for me, I wasn't, for them its another story. Their secret would be 6 feet under and no one the wiser). When they mix this powder and liquid, it turns into formaldehyde fumes and can travel thru the nicks and crannies of the tooth, including out into the gums. One of the most serious problems from this is a chronic bone infection (chronic osteomyelitis). It turns the bone into mush and can't be stopped without a boat load over serious antibiotics and surgeries, if at all.

Make sure you know what you dentist used in any root canal. Since they disquise the name often to conceal it from patients and other doctors....and don't for a minute believe it doesn't happen...you need to explicitly ask WAS ANYTHING WITH ANY AMOUNT FOR FORMALDHYDE USED IN MY ROOT CANAL PROCEDURE? If they start tap dancing, get your records and get to an oral surgeon. You can contact me and I can put you in touch with someone who can find a lawyer to sue the pants off of the dentist. I'm not a sue happy person but I had never been put in a situation like this. This crap is considered so bad that my doctors were telling me to hire a lawyer. My case is in textbooks and used in lectures at dental schools. The industry thought it had gone away by the 90's. Not the case

It is likely not your problem, most especially if an endo did your root canal but....some one has to be the patients of these dentists to do what they do.

51

Thanks, Not Again! :)

I'm having a better day emotionally/pain-wise -- although I'm getting the epic run-around trying to get my medical records sent to the pain management clinic so that they can DECIDE whether I'm allowed to get a first appointment -- why, no, the lady in a wheelchair CANNOT schlep around to three different doctors an hour apart, to fill out this stupid form, and no, I don't have a LANDLINE, much less a FAX MACHINE -- I hate HIPAA with the fire of a thousand suns. Seriously, I need my doctors to work TOGETHER, and I need them to share records! Argh!

I hope that this provides a fun and interesting distraction, and I'm so sorry that you're having another flare!

My daughter and I have actually done some similar research (she's an Environmental Science major, but she's taking a lot of chemistry courses and she's talking with a pharmacology student at her school), and it's an interesting mystery. They're all calcium channel blockers, but you'd think that we'd either be insensitive to either the whole -amides branch and that the -esters would work on us, or that we'd have noticeably reduced responses to all -amides.

Instead, we've used ourselves as guinea pigs in various medical procedures, because we don't have much choice in the matter, but we've reported our successful results to people in the EDS community who might otherwise have to suffer through needless painful procedures like I did throughout my teens and twenties -- nothing like a doctor telling you that you're being a "drama queen" because "I injected twice the normal dose, and you're saying you can still feel the knife -- just close your eyes!" Ugh!

Our results were that Marcaine, Carbocaine, Septocaine, and Benzocaine definitely do work.

Ropivicaine is a 'maybe' (I got it as part of a nerve block procedure with twilight sedation, and when I stopped breathing during the last nerve block and they woke me up to do it, it didn't seem like the Ropivicaine did anything for post-procedure pain -- it did seem to last for a couple of hours the first two times they did it, when I was under.)

But, yeah -- I have Raynaud's (another fun EDS comborbid condition), and I have to get 100 shots in the palms of my hands every 6 months (Botox) in order to keep it under control to the point that it's not agonizing ALL THE TIME and impairing my ability to function (wish I could get my feet done, but I can't afford it -- insurance won't pay, because it's an 'investigational treatment,' even though it's been proven by research studies to work . . . but the Botox manufacturer would have to go through FDA trials to show that this procedure, already in use for palmar and plantar hyperhidrosis, ALSO works for Raynaud's. So far, the profit hasn't been there, since Raynaud's isn't hugely common.)

Anyway, the doctor always flinches, because he usually gives his patients EMLA, and obviously that won't do a thing for me. I keep telling him "Yeah, this is uncomfortable, but it gives me my hands back for six months -- so the shots are nothing!" He tells me I'm hardcore ;)

*hugs and good health/reduced pain vibes*

Not Again said:

Dear Ashbet -

Reading this post caused me to go digging through my anesthesia textbooks to read up about Ehlers-Danlos (I am a CRNA). Did not remember that it is an inherited syndrome, although the incidence is about 1 in 5000 people affected. I certainly hope that you do not have type-IV, which is associated with high risk d/t vascular & cardia complications.

My interest was piqued because of your Lidocaine (aka Xylocaine) issue. Lidocaine is an amide type local anesthetic, which means it is cleared by the liver, like most other drugs.Carbocaine (mepivicaine) & Marcaine (bupivacaine) are also amide anesthetics. Carbocaine and Lidocaine have the same relative potency (2) but carbocaine has a slightly longer duration of action. Marcaine has the hightest relative potency (8) and also the longest duration of action. So now my scientific curiosity has me on a quest to figure out why there is a lidocaine insensitivity with EDS. This is a good thing for me today, since my TN has been screaming since I got up and brushed my teeth this morning :(

Hope you are having a better day :)

52

Yikes! I need to stop complaining about my paltry problems. Chronic pain really SUCKS!!! But I should count my blessings that I do not have other co-morbidities. Glad you are having a better day :) I have still gotten ZERO relief from my meds (still in my PJs & robe and it's 3:33 p.m. here) and I have maxed out my dosges (well, not really...just the prescribed dosages). But I do follow the prescribed amounts exactly as ordered....even though they are most-times inadequate. Don't need to get labeled as an "abuser"!! I just found a clinical trial for a new nasal applicator of local to one of the TN ganglions. I think I may try to get into it, although it's in Chicago and they may not take me. Might be worth a try.

It really galls me when insurance won't cover remedies that are proven helpful for real problems, when they are also used for cosmetics...like Botox. In fact, I am going for some tomorrow. I had it done once before my son's wedding (pure vanity 'cuz I wanted to look good...lol) and discovered that it helped reduce the amount of eye pain that I get. I don't know why it works....maybe I squint or something when I read and it aggravates some little TN branch. All I know is that it helps. Of course....not covered by insurance; but to me it's money well spent because it helps reduce the pain!

Glad that you have found what works for you (local anesthetics)...it's a shame that you had to find out the hard and painful way :( Doesn't say much about our health care providers though!!

Good luck with your appointments and I wish you the best!

Ashbet said:

Thanks, Not Again! :)

I'm having a better day emotionally/pain-wise -- although I'm getting the epic run-around trying to get my medical records sent to the pain management clinic so that they can DECIDE whether I'm allowed to get a first appointment -- why, no, the lady in a wheelchair CANNOT schlep around to three different doctors an hour apart, to fill out this stupid form, and no, I don't have a LANDLINE, much less a FAX MACHINE -- I hate HIPAA with the fire of a thousand suns. Seriously, I need my doctors to work TOGETHER, and I need them to share records! Argh!

I hope that this provides a fun and interesting distraction, and I'm so sorry that you're having another flare!

My daughter and I have actually done some similar research (she's an Environmental Science major, but she's taking a lot of chemistry courses and she's talking with a pharmacology student at her school), and it's an interesting mystery. They're all calcium channel blockers, but you'd think that we'd either be insensitive to either the whole -amides branch and that the -esters would work on us, or that we'd have noticeably reduced responses to all -amides.

Instead, we've used ourselves as guinea pigs in various medical procedures, because we don't have much choice in the matter, but we've reported our successful results to people in the EDS community who might otherwise have to suffer through needless painful procedures like I did throughout my teens and twenties -- nothing like a doctor telling you that you're being a "drama queen" because "I injected twice the normal dose, and you're saying you can still feel the knife -- just close your eyes!" Ugh!

Our results were that Marcaine, Carbocaine, Septocaine, and Benzocaine definitely do work.

Ropivicaine is a 'maybe' (I got it as part of a nerve block procedure with twilight sedation, and when I stopped breathing during the last nerve block and they woke me up to do it, it didn't seem like the Ropivicaine did anything for post-procedure pain -- it did seem to last for a couple of hours the first two times they did it, when I was under.)

But, yeah -- I have Raynaud's (another fun EDS comborbid condition), and I have to get 100 shots in the palms of my hands every 6 months (Botox) in order to keep it under control to the point that it's not agonizing ALL THE TIME and impairing my ability to function (wish I could get my feet done, but I can't afford it -- insurance won't pay, because it's an 'investigational treatment,' even though it's been proven by research studies to work . . . but the Botox manufacturer would have to go through FDA trials to show that this procedure, already in use for palmar and plantar hyperhidrosis, ALSO works for Raynaud's. So far, the profit hasn't been there, since Raynaud's isn't hugely common.)

Anyway, the doctor always flinches, because he usually gives his patients EMLA, and obviously that won't do a thing for me. I keep telling him "Yeah, this is uncomfortable, but it gives me my hands back for six months -- so the shots are nothing!" He tells me I'm hardcore ;)

*hugs and good health/reduced pain vibes*

Not Again said:

Dear Ashbet -

Reading this post caused me to go digging through my anesthesia textbooks to read up about Ehlers-Danlos (I am a CRNA). Did not remember that it is an inherited syndrome, although the incidence is about 1 in 5000 people affected. I certainly hope that you do not have type-IV, which is associated with high risk d/t vascular & cardia complications.

My interest was piqued because of your Lidocaine (aka Xylocaine) issue. Lidocaine is an amide type local anesthetic, which means it is cleared by the liver, like most other drugs.Carbocaine (mepivicaine) & Marcaine (bupivacaine) are also amide anesthetics. Carbocaine and Lidocaine have the same relative potency (2) but carbocaine has a slightly longer duration of action. Marcaine has the hightest relative potency (8) and also the longest duration of action. So now my scientific curiosity has me on a quest to figure out why there is a lidocaine insensitivity with EDS. This is a good thing for me today, since my TN has been screaming since I got up and brushed my teeth this morning :(

Hope you are having a better day :)

53

I am hopelessly lost on the threads of this discussion but I saw that someone asked why Botox works and just yesterday I wrote the following in my notes:

Botox works by binding to high- affinity recognition sites on the presynaptic cholinergic nerve terminals and therefore blocks the release of acetylcholine.

My MSP won’t pay for it either because my pain hasn’t come from a stroke.
However, now I have HFS and going to see another neuro about that and it might get covered…all this is so complicated. If I sell my house though I’m not waiting for any insurance.

54

Uh- I am getting lost too. LOL. I didn't ask about Botox... LOL

55

Thanks for this- I printed it out.

Cleo said:

link on anesthetic nerve damage

Occurrence of Paresthesia After Dental Local Anesthetic Administration in the United States

http://jada-plus.com/content/141/7/836.full

56

If it is a Frontal Tooth and you can't tolerate implants-- what the heck are you supposed to do? This is a monster-- and I just don't know how to fight it..... I am not a medical doctor- not a dentist--not an endodontist-- I just do the best I can-- and pray it is the right thing.... my pain started before dental work-- in my left ear... just exploded after the root canal... I still feel pain in the roof of my mouth where I got that shot...... Geesh.

Damaged by Sargenti Paste R/C said:

Be careful bout the use of Septocain and Articane injections especially in the area of back molars. A now defunct dental injury board had many patients who were permanently injured from the stronger chemicals in them...especially when used for back molars. Since it wasn't my problem, I didn't research it but there were many many who said that the manufacturer has documention of the higher toxicity levels but it didn't deter the FDA (gee, what I surprise). Injuries from novacaine injections, regardless of what it does to the patient, are not considered malpractice, just bad luck of the draw.

Honestly and sadly, you can't believe anyone, especially when it involves your health. Thank God for the internet and other patient stories. I think patient stories are more valuable than any of these sites that quote out of date statistics.

I only allow my dentist and endo (god help me if I need another root canal..I may just become toothless) to use lidocaine. I make sure my dentists know my whole story, lawsuit, website and campaigns to the FDA, ADA, etc... because of what happened to me. I used to be serious dental phobic and surprisingly I'm not anymore. I feel more empowered with knowledge - medical, legal and ethical. At this point in my life, I prefer my dentists to be more afraid of me than vice versa. Most dentists are horrified when they hear my story.

Please be careful about these injections. I would also use Mericain (sp). If you get an electric shock during the dental procdure, they probably hit your nerve and you need to have them stop. It isn't a good sign like many want people to believe.

I have a website about this sargenti material and what can happen to you if you get one of these root canals. I can't post the address (and it needs updated) but my society is called the "Sargenti Opposition Society". The NBC video is highly telling. 60 minutes and Good Morning Americal did stories in the 80s showing the absolute worst know case of it but I haven't been able to get permission to post them.

Sorry if I hijacked the thread. Anytime I read about root canals, my antennas go up! Ask your dentist about it. Run if they say anything good or even fair about it.


Ashbet said:

Thanks, Not Again! :)

I'm having a better day emotionally/pain-wise -- although I'm getting the epic run-around trying to get my medical records sent to the pain management clinic so that they can DECIDE whether I'm allowed to get a first appointment -- why, no, the lady in a wheelchair CANNOT schlep around to three different doctors an hour apart, to fill out this stupid form, and no, I don't have a LANDLINE, much less a FAX MACHINE -- I hate HIPAA with the fire of a thousand suns. Seriously, I need my doctors to work TOGETHER, and I need them to share records! Argh!

I hope that this provides a fun and interesting distraction, and I'm so sorry that you're having another flare!

My daughter and I have actually done some similar research (she's an Environmental Science major, but she's taking a lot of chemistry courses and she's talking with a pharmacology student at her school), and it's an interesting mystery. They're all calcium channel blockers, but you'd think that we'd either be insensitive to either the whole -amides branch and that the -esters would work on us, or that we'd have noticeably reduced responses to all -amides.

Instead, we've used ourselves as guinea pigs in various medical procedures, because we don't have much choice in the matter, but we've reported our successful results to people in the EDS community who might otherwise have to suffer through needless painful procedures like I did throughout my teens and twenties -- nothing like a doctor telling you that you're being a "drama queen" because "I injected twice the normal dose, and you're saying you can still feel the knife -- just close your eyes!" Ugh!

Our results were that Marcaine, Carbocaine, Septocaine, and Benzocaine definitely do work.

Ropivicaine is a 'maybe' (I got it as part of a nerve block procedure with twilight sedation, and when I stopped breathing during the last nerve block and they woke me up to do it, it didn't seem like the Ropivicaine did anything for post-procedure pain -- it did seem to last for a couple of hours the first two times they did it, when I was under.)

But, yeah -- I have Raynaud's (another fun EDS comborbid condition), and I have to get 100 shots in the palms of my hands every 6 months (Botox) in order to keep it under control to the point that it's not agonizing ALL THE TIME and impairing my ability to function (wish I could get my feet done, but I can't afford it -- insurance won't pay, because it's an 'investigational treatment,' even though it's been proven by research studies to work . . . but the Botox manufacturer would have to go through FDA trials to show that this procedure, already in use for palmar and plantar hyperhidrosis, ALSO works for Raynaud's. So far, the profit hasn't been there, since Raynaud's isn't hugely common.)

Anyway, the doctor always flinches, because he usually gives his patients EMLA, and obviously that won't do a thing for me. I keep telling him "Yeah, this is uncomfortable, but it gives me my hands back for six months -- so the shots are nothing!" He tells me I'm hardcore ;)

*hugs and good health/reduced pain vibes*

Not Again said:

Dear Ashbet -

Reading this post caused me to go digging through my anesthesia textbooks to read up about Ehlers-Danlos (I am a CRNA). Did not remember that it is an inherited syndrome, although the incidence is about 1 in 5000 people affected. I certainly hope that you do not have type-IV, which is associated with high risk d/t vascular & cardia complications.

My interest was piqued because of your Lidocaine (aka Xylocaine) issue. Lidocaine is an amide type local anesthetic, which means it is cleared by the liver, like most other drugs.Carbocaine (mepivicaine) & Marcaine (bupivacaine) are also amide anesthetics. Carbocaine and Lidocaine have the same relative potency (2) but carbocaine has a slightly longer duration of action. Marcaine has the hightest relative potency (8) and also the longest duration of action. So now my scientific curiosity has me on a quest to figure out why there is a lidocaine insensitivity with EDS. This is a good thing for me today, since my TN has been screaming since I got up and brushed my teeth this morning :(

Hope you are having a better day :)

57

Damaged- can you send me a f/r-- I can't figure it out anymore-- it wants e-mail addresses and I don't have anyone's e-mail addresses here.... o.O

Damaged by Sargenti Paste R/C said:

Be careful bout the use of Septocain and Articane injections especially in the area of back molars. A now defunct dental injury board had many patients who were permanently injured from the stronger chemicals in them...especially when used for back molars. Since it wasn't my problem, I didn't research it but there were many many who said that the manufacturer has documention of the higher toxicity levels but it didn't deter the FDA (gee, what I surprise). Injuries from novacaine injections, regardless of what it does to the patient, are not considered malpractice, just bad luck of the draw.

Honestly and sadly, you can't believe anyone, especially when it involves your health. Thank God for the internet and other patient stories. I think patient stories are more valuable than any of these sites that quote out of date statistics.

I only allow my dentist and endo (god help me if I need another root canal..I may just become toothless) to use lidocaine. I make sure my dentists know my whole story, lawsuit, website and campaigns to the FDA, ADA, etc... because of what happened to me. I used to be serious dental phobic and surprisingly I'm not anymore. I feel more empowered with knowledge - medical, legal and ethical. At this point in my life, I prefer my dentists to be more afraid of me than vice versa. Most dentists are horrified when they hear my story.

Please be careful about these injections. I would also use Mericain (sp). If you get an electric shock during the dental procdure, they probably hit your nerve and you need to have them stop. It isn't a good sign like many want people to believe.

I have a website about this sargenti material and what can happen to you if you get one of these root canals. I can't post the address (and it needs updated) but my society is called the "Sargenti Opposition Society". The NBC video is highly telling. 60 minutes and Good Morning Americal did stories in the 80s showing the absolute worst know case of it but I haven't been able to get permission to post them.

Sorry if I hijacked the thread. Anytime I read about root canals, my antennas go up! Ask your dentist about it. Run if they say anything good or even fair about it.


Ashbet said:

Thanks, Not Again! :)

I'm having a better day emotionally/pain-wise -- although I'm getting the epic run-around trying to get my medical records sent to the pain management clinic so that they can DECIDE whether I'm allowed to get a first appointment -- why, no, the lady in a wheelchair CANNOT schlep around to three different doctors an hour apart, to fill out this stupid form, and no, I don't have a LANDLINE, much less a FAX MACHINE -- I hate HIPAA with the fire of a thousand suns. Seriously, I need my doctors to work TOGETHER, and I need them to share records! Argh!

I hope that this provides a fun and interesting distraction, and I'm so sorry that you're having another flare!

My daughter and I have actually done some similar research (she's an Environmental Science major, but she's taking a lot of chemistry courses and she's talking with a pharmacology student at her school), and it's an interesting mystery. They're all calcium channel blockers, but you'd think that we'd either be insensitive to either the whole -amides branch and that the -esters would work on us, or that we'd have noticeably reduced responses to all -amides.

Instead, we've used ourselves as guinea pigs in various medical procedures, because we don't have much choice in the matter, but we've reported our successful results to people in the EDS community who might otherwise have to suffer through needless painful procedures like I did throughout my teens and twenties -- nothing like a doctor telling you that you're being a "drama queen" because "I injected twice the normal dose, and you're saying you can still feel the knife -- just close your eyes!" Ugh!

Our results were that Marcaine, Carbocaine, Septocaine, and Benzocaine definitely do work.

Ropivicaine is a 'maybe' (I got it as part of a nerve block procedure with twilight sedation, and when I stopped breathing during the last nerve block and they woke me up to do it, it didn't seem like the Ropivicaine did anything for post-procedure pain -- it did seem to last for a couple of hours the first two times they did it, when I was under.)

But, yeah -- I have Raynaud's (another fun EDS comborbid condition), and I have to get 100 shots in the palms of my hands every 6 months (Botox) in order to keep it under control to the point that it's not agonizing ALL THE TIME and impairing my ability to function (wish I could get my feet done, but I can't afford it -- insurance won't pay, because it's an 'investigational treatment,' even though it's been proven by research studies to work . . . but the Botox manufacturer would have to go through FDA trials to show that this procedure, already in use for palmar and plantar hyperhidrosis, ALSO works for Raynaud's. So far, the profit hasn't been there, since Raynaud's isn't hugely common.)

Anyway, the doctor always flinches, because he usually gives his patients EMLA, and obviously that won't do a thing for me. I keep telling him "Yeah, this is uncomfortable, but it gives me my hands back for six months -- so the shots are nothing!" He tells me I'm hardcore ;)

*hugs and good health/reduced pain vibes*

Not Again said:

Dear Ashbet -

Reading this post caused me to go digging through my anesthesia textbooks to read up about Ehlers-Danlos (I am a CRNA). Did not remember that it is an inherited syndrome, although the incidence is about 1 in 5000 people affected. I certainly hope that you do not have type-IV, which is associated with high risk d/t vascular & cardia complications.

My interest was piqued because of your Lidocaine (aka Xylocaine) issue. Lidocaine is an amide type local anesthetic, which means it is cleared by the liver, like most other drugs.Carbocaine (mepivicaine) & Marcaine (bupivacaine) are also amide anesthetics. Carbocaine and Lidocaine have the same relative potency (2) but carbocaine has a slightly longer duration of action. Marcaine has the hightest relative potency (8) and also the longest duration of action. So now my scientific curiosity has me on a quest to figure out why there is a lidocaine insensitivity with EDS. This is a good thing for me today, since my TN has been screaming since I got up and brushed my teeth this morning :(

Hope you are having a better day :)

58

Beekeeper,

If you would choose to get your tooth removed instead of a root canal they have partial dentures with just one tooth..I think they are called "flippers"?? I read about them on the dental site I read..Hope your tooth is still feeling better....

59

I am just depressed today- it is about 10 am-- and I'm going to do a wee bit around the house- take a shower and go to bed... I am tired of doctors-- and everything else...... just need to go to bed for a while..... :(

60

I am getting lost in this thread too. Thanks for the post. I think I wrote that I didn't know how Botox works. That was not quite correct. I do know the mechanism by which it works to paralyze the small muscles.(thanks for your very eloquent definition, btw). It's understanding WHY it works that is a mystery. All of my Doctors say it should not help to relieve TN pain. But all I know is that it does help reduce my eye pain. I'm going in for injections today and hoping that in a few days I have some relief :)

Bellalarke said:

I am hopelessly lost on the threads of this discussion but I saw that someone asked why Botox works and just yesterday I wrote the following in my notes:

Botox works by binding to high- affinity recognition sites on the presynaptic cholinergic nerve terminals and therefore blocks the release of acetylcholine.

My MSP won't pay for it either because my pain hasn't come from a stroke.
However, now I have HFS and going to see another neuro about that and it might get covered....all this is so complicated. If I sell my house though I'm not waiting for any insurance.