Really Need Some Help Regarding Dental Treatment---pots And Eds Both

[Maxine]

I know I've been here before on this, but I really have some pretty serious dental issues.

Last year in March I either fractured a molar under my bridge, or I have some decay under it. The orthodontist said I had a a cavity. The dentist I was going to filled a deep cavity under the bridge on the back molar. He also filled a cavity on another tooth on the other side of the bridge---(forgot what those are called-- ). Anyway, my EDS has affected my back teeth. I have excellant dental hygene, and floss every day. The EDS doc said decay can happen under the gum line even if we take good care of our teeth.

When I had my cardic loop recorder put in in 2005 I had a terrible reaction to lidocaine--WITHOUT EPI. I never told the doctor about it until my next appointment with him. I just stayed at the hospital until it passed. It started with severe dizziness, light headed, nausea, tachycardia, and adrenaline rushes. It lasted about 8 hours. The worst of it lasted about 5, and that is how long I stayed at the hospital. I read some articles on lidocaine, and I know if the dose it too high it can become toxic. My vascular tone is poor from the EDS, and it was injected into the chest area. With EDS my body could be absorbing it too quickly. A lot of it was used. I know if EPI is used more lidocaine can be used, but people with POTS don't tolerate EPI well.

I'm in a tough spot here. I have been in touch with the oral surgeon, and they have been looking into getting this doone in a hospital setting due to not being able to tolerate lidocaine, cervical/cranial instability, and my POTS with low BPs. I have called several times to try and find out what is going on with the insurance. I have had two xrays taken to check for abcess or infection. It does bother me, but it's hard to tell sometimes as I have a lot of pain in my neck and it spreads to my jaw making my teeth hurt also. I don't know if it's the tooth until I lie down, and if the pain goes away, it's my neck.

The whole lower cranial area is a mess, and so is my upper neck. I am afraid of what will happen when I do get this tooth pulled, as the oral surgeon is lost on the potential problems that can arise when the force that is needed to pull the tooth is used. It's very unstable in my neck/cranial junction just behind the tooth. I have an orthopedic surgeon who has been watching the instability.

In the meantime I have had more problems with numbness in arms, hands, and legs. I'm also having slurring in my speech, and trouble with thinking of words when having a conversation. My last report from the neurologist said I also have a lesion on medulla area, along with the lesions in the periventricular area. So basically, I feel a mess.

I finally got the my lower barium GI, and a abdominal CT-----you all know how long I put that off. I have a brother with colon cancer right now, and my mother just died earlier this year, and her brother died 2 weeks of colon cancer after she died. In my past posts I have been talking about my fears of the testing, but my Doctor found a way around it. She said get the barium lower GI, as it can spot polyps, and rule out tumors ect. Then we can take it from there if something is found. This was done last week, and a lot of diverticuli was found, and questionable polyps. She said I should do a virtual colonoscopy in 6 months. She wants to avoid sedation.

I feel good about getting this done, but still will need more testing as the CT spotted thickening in duodeum. I do have large diverticuli, and the radiologist thought it is more likely I have this, and less likely a neoplasm--(tumor)----but it was till mentioned as a differential. She said get an upper barium GI in January----she does not believe I have cancer, but want's to have the inflammation looked at.

I have a lot going on, and I'm not very stable. My dysautonomia started after getting another molar pulled---the one the bridge covers.

I know I need some kind of sedation to relax me when I do go for the tooth extraction, but what in the heck are they going to do! Either way I feel I'll have problems. Maybe lidocaine can be used because they wouldn't use as much as the doctor used when putting in the loop recorder. I talked with an anesthesiologist--(spelling?), and he was clueless about POTS, and EDS.

Sorry this is long, but I know some of you have been following my battle with trying to get all of this necessary stuff done.

I live with this anxiety every day, as I know my health has not been stable. My Bp has been so low also.

Has anyone had a simular situation with dental issues?

I see my dentist again on Wednesday.

Maxine :0)

[Tessa]

Hi Maxine.

I am so sorry about your reaction.

Well, I am not a doctor but do you mind if I give a suggestion?Isn?t it better if they tested you to see what you can tolerate?

I have never had a reaction to dental issues (at least not by now), but I had a similar reaction some years ago with a local anesthetic (Novocaine) while having an infiltration (neck).

It was a very scary experience, also with severe dizziness, light headed, a very fast heart rate, chest pain and syncope. It seems that my bp rushed down too.

I am telling you this because I asked for a drug allergy testing. Unfortunately it was not carried out the way I expected or the way they should have done it, because they did not tested the drug itself but another one (substitute) and the procedure was not very accurated but now I have been told that I should use Mepivacaine instead (because I had no reaction to it during the test). Of course, all bodies are different and you should test your reactions to know which one would be safe for you.

The medical report also states that I had an adverse reaction to Novocaine and that I should avoid it (as well as other drugs listed)... The only way to know (safely) which one is good for you is to go through a test... But that?s only my opinion.

It is said that it is usual for those with POTS to have adverse reactions to some drugs... I would rather be sure before trying at the dentist. Don?t you?

Have you asked a doctor?

Take care and please, keep us updated,

Love,

Tessa

[anna]

Hi Maxine,

I am not sure if this is of any relavance, but one of my sons had to have some teeth out 2 last week and one this. The injections he had last week triggered off an arthimia (sp sorry!) so I thought it might be to do with the Ephadrine (sp), spoke to dentist this week and he changed the the local to another type that contains another vaso constrictor and no ephodrine, son had no heart problems with that one but the local did not work for long at all dentist said he had never seen anything ware off so quick! So might you be able to find another local to use.

Anna

[Maxine]

The dentist did give me the name of an allergist. However, my EDS Doctor thought it may be a problem with my vasculat tone from the EDS.

Thanks for reminding me about the allergist. I should go. I never have hayfever, or running nose---rashes---things that come with allergies, so I figured I was not allergic, just super sensitive----------or my body takes it up too quickly---thus becoming toxic.

I go to the dentist for teeth cleaning, and i'll request an exam and x-ray to make sure I don't have an infection-----buy some more time I guess---

Maxine :0)

[Rachel]

Maxine,

I don't have the chiari issues, but I do have hypermobility and dental problems. When I have dental work done I use lidocaine with epinephrine. It has never been a problem for me and I'm on the severe end of the POTS spectrum. I spoke with my dentist about these issues a few years ago. His concern was that if I used lidocaine without epi that the lidocaine would wear off too quickly. If I then felt pain while they were working it would send a bolt of adrenalin through my body. So his recommendation was to just take the small amount of epinephrine that was in the shot instead of the huge amount that my body could produce if the lidocaine wore off too quickly. I took his advice and didn't have a problem, but of course that was me. Do talk it over with your dentist and let him know your symptoms and concerns.

I hope it all goes well for you and that you can have your dental problems fixed without causing other health issues to flare up.

Rachel

[Maxine]

Thank you Tessa and Anna for your kind and thoughtful responces. Also thankyou for the advice -----I found the name of the allergist in my wallet, and it surely couldn't hurt to see if I'm allergic. I have enough adverse reactions that I feel an allergist can at least rule out any other allergies also----- .

My reaction to the "lidocaine" without EPI was pretty bad, and it's beyond what I have ever experienced.

Thanks Rachel for your input as well ------------Pain was not the issue----nor the cause for my adrenaline rushes.-- Pain is distressing, but it does not cause of the reaction that I had. The only pain I experienced was when the loop recorder was pushed deep into my tissue, and it was brief. My reaction happened after the doctor told me I was free to go----there wasn't any time spent in recovery. I got exceptionally light headed, I couldnt feel my body, then dizzy, nausea, disoriented, tachy, tremors, and adrenaline rushes.

I'm in so much pain every day, and this does not produce adrenaline rushes initially---------it just tires me out a lot, and of course it's depressing. You can not imagine the pain that my spine instability problems bring. My reaction was clearly NOT NORMAL-----but it wasn't Pain induced this time. Otherwise I would be walking around with one non stop adrenaline rush with the pain I deal with daily. I don't often talk about my pain levels, as much as I do my other bothersome symptoms----like fatigue, weakness, and other neuro related problems.

I do know that pain can aggravate the sympathetic nervous system, and make it more likely to have adrenaline rushes in folks that have POTS. This is mentioned in the dental advice link I sent. So pain levels need to be monitored, but problems with local anesthetics is also mentioned.

I have spoken at length with my EDS doctor, and he just said to have it done in a hospital setting with an anesthesiologist attending. My vascular tone is poor, and it's quite possible I metabolized the lidocaine too quickly according to the EDS Doc.

When I do get this done, I need a good anesthesiologist who has a good knowledge of EDS/POTS, and severe drug sensitivities.

I need to be taken more seriously about this-----all the way around.

I know my post was rather LONG and DRAMATIC----but this has been a real bummer, as too much is going on at once.

I do feel a bit better about getting the GI testing done, but unfortunately more testing is now required.

The cervical/cranial instability needs to be considered as well.

Thanks again girls!

Maxine :0)

[Michelle Sawicki]

You might find this paper helpful:

Postural Orthostatic Tachycardia Syndrome: Dental Treatment Considerations

Michelle

[Rachel]

I'm sorry, Maxine. That must have come across wrong in my post. I wasn't trying to say that your reaction was caused by an adrenalin rush from pain. You deal with a lot of pain on a daily basis, much more than I do. I just meant that, for me, the reason we chose to go with the epi was because if I was relaxed and then suddenly felt pain from drilling it would cause my body to naturally release adrenalin in an amount greater than the epi in a shot. So, for me, that's why we went that route, and I just wanted you to know that the epi didn't affect my POTS. But, again, that's just me, and everyone is different.

I hope you can find a good anesthesiologist and the proper treatment for your situation. Let us know how it goes.

All the best,

Rachel

[Maxine]

No problem Rachel, As I know a sudden SHARP pain can mess a POTS person up by causing adrenaline rushes. I'm just not affected this way the majority of the time. I get fillings all the time, even crown preps without any anesthetic because I dread long term reactions from the anesthetic.

I remember a time---maybe a year and a half ago when that same back molar--(the one that needs to be extracted) had a very deep filling under the bridge. Now that one hurt like crazy! I never had that happen, but I never had any kind of adrenaline rush, and if I did----I didn't realize it because the pain was insane. It was only very brief, so once the pain was done, all I felt was relief. On most occasions I tolerate fillings and crown preps well without any anesthetic.

Thanks Michelle -----I have read this, and it's very interesting. I have saved this to my bookmark.

Maxine :0)