Good Afternoon,

I have a dental appt tomorrow to get 4 fillings. It seems since all this anaphylaxis junk started my entire mouth of teeth is rotting away. I actually have to get 8 fillings but they are breaking it up into two appts.

I am really nervous about the antisthetic causing me to react. I haven't seen a masto specialist yet so I can't get recommendations on what to do. I thought I check with you guys about premedicating with prednisone and benadryl or hydroxizine. Or do you think I should cancel until I can see Dr. Akin?

The dentist called today wondering what they should do if I have problems. I told them I want them to give me just a small amount of novacaine to start with and maybe not use the topical numbing agent. I would hope just a small amount would give me a smaller reaction if I had one. If I do ok with the small amount then I could have them use more in other areas.

I'm also thinking about taking a xanax to keep my nerves in check since that is a problem for me.

Thoughts/ideas???

thanks a bunch,
Kristi

     When I asked Dr. Akin about pre-medicating, he referred me to the TMS website.  It's:   www.tmsforacure.org   There you'll find the protocols and a packet of information for pre-medicating for medical procedures.  It also will tell you which of the local anesthetic drugs are safest for people with masto.  Please note that there was an error in the packet chart about muscle relaxants.  It's probably been fixed by now, but the preceding text that lists the safer ones is correct for sure.  That's probably not relevant to dental procedures, but...just in case for another time.

  If you are prone to tachycardia, it might be good to ask for one without epinephrine in it.  TMS says that local anesthetics in the "ester" group should be avoided.  They also say that anaphylactic reactions in the "amide" group are rare, and this includes lidocaine, mepivacaine, prilocaine, bupivacaine, levobupivacaine, and ropivacaine.  Still, it's important to read everything in the "packet" on their website to double check before you go any medical procedure.  Also, you might want to talk with your doctor, since you don't have a diagnosis, about whether it's safe to have the work done.  I would think it should be better to do it than not, as bacteria can be a trigger, too, but that's only what I would do.

  I use Ativan before dental work, but Xanax is probably equally good.  Just don't try anything new to your body the same day as your procedure.  Try it a couple of days ahead of time, and only when someone else is around in case you react.

Kristi,
Ok, take a breath! Have you printed the ER protocol binder from the TMS website? Heres the link for that http://tmsforac.ipower.com/documents/Binder1.pdf
( the pages I'm referring to pay special attention to on the current subject matter is page 17-20 for general reading and page 21-23 to print out for yourself and dentist in regards to medicines/anesthesia rx's.) But print the entire binders worth of info and get yourself a binder to organize your info make one for your vehicle and one at home.

after you print it, go to the emergency protocol section then look at the drug section and read it, then a page or tow after is the medical emergency response plan, you can give both of those to the dentist, crossing out or commenting if there is anything listed on those that you already know you cannot have. I keep that in my purse also in case I pass out in public.  then there's a chart that actually says avoid these drugs and drugs that are typically tolerated, print extra copies of these sections for yourself and your dentist.

I don't currently know what your trigger situation is, there are a lot of mast patients that don't radically trigger to everything on the planet then there are those that do. Plenty of the people on here have been to the dentist and done absolutely fine premedicating just as you did!
Dentist for me is total no bueno, so far I'm able do avoid and will at all costs, but my line of triggers as far as medications/chemicals/preservatives/plastics/vinyls.  Also keep in mind many of us have survived plenty of nasty degranulating episodes. You are correct your nerves will not help the situation, that alone could degranulate you.
This is overwhelming when it comes at you full throttle, eventually you will understand a lot and be able to gauge your body and medicate it properly according to it's daily need!

Hi Kristi

Oh hon . i completely understand I will pm you my emalil addy so you can write to me and I will send them as I ahve them saved in my PC

You don't need a psych sweets You experienced the anxiety and a mast cell effect sweets . Its all going to be OK you know . Did you flush ? I do understand you want it to go away . I do as well , but I know if i work with it rather than fight it , I win ( more of the time )
I was so pissed my body would not tow the line , that I in essence didn't ahve control over it . Then it twigged . There was no point contining this way as it only made everything worse .

My @@@@ moment that I had to accept things had changed was my partners birthday . I had to ask and take lots of help to give him a good day and in the end he had to cream his own birthday cake . I wanted to go to the supermearket and buy his things - i can't go in there . i am too reactive . Its too risky . I wanted to make his dinner , the carer had to . I am not on apitty party . I just wanted to do it my way , Not the way my illness dictated .

Its ok to be upset about this . Its ok to cry and shout and hit soft furnishings . It will pass , that moment of sadness will pass . You will find the right help , doctors and support .

You are here , we have been able to keep you safe , you are safe and when you have your fillings you will be stable and safe xxxxxxxxx

I have a moment when i wake up , where some days I forget for that moment . I remember when I move . Does this make me sad yes , do I cry , yes sometimes . Do I cope and do , yes

many hugs
Josie

Thanks, Ladies!! (again)

Sandi, I'm sorry to  hear you've had problems with the allegra 180 and zantac. I thought I was the only one. I've been so frustrated with giving them another shot. I want them to work for me with no side effects so that I can get stronger symptom control than I'm getting with pepcid, claritin and zyrtec. I had been toughing it out taking the two for the past week but forgot to yesterday. I felt great all morning and then took the allegra in the afternoon and boom, all of the visual disturbance stuff came right back and so did the bad flushing/eye burning. The zantac seems to make my intestines shut down. I hear these horrible sounds coming from my stomach area all day long and it gives me horrible constipation (sorry, tmi!) which I am afraid to treat with fiber or laxative pills due to possible reactions. I bought a bottle of dye free childrens liquid allegra which I'm going to try. I know those inert ingredients are probably a big part of my problem. Also I'm wondering if 180 is just too high of a dose at one time.

Thanks, too, Sandi, for the link to the emergency protocol. I hate to let the fear of reacting to anything new get the best of me. I'm just kind of fearful now after I reacted to IV Benadryl during my surgery a few weeks ago. It was benadryl for crying out loud! When I told the allergist and dentist that they looked at me a bit funny and said that doesn't make sense. Yep, I agree. Nothing makes sense anymore. Things will get better, I know.

Josie, I got your pm with email. I'll send you a message. Thanks for giving me some perspective. I'm sure it was hard to ask for help planning a birthday party for your partner. It sounds like you have gotten to a place of peaceful coexistence with this monster. I hope I get there soon.

Lisa, thanks for directing me to the protocols. I will print them out and keep them with me. I think I might also get a medical alert bracelet. I'm so fearful of passing out and someone coming to my aid and not knowing what to do. I've even instructed my kids to get a neighbor if it happens when it's only us at home and give them my epipen. My first big reaction happened when my husband was in Europe on business at 11 pm. My kids were sleeping so I used the epi pen and called a neighbor and they called 911 for me. I will also ask my primary care doc about doxepin, although the antidepressent part scares me. I have done ok with ativan/xanax/klonopin, I just think I need a higher dose for procedures.

I called Dr. Akin today. They are sending me a packet to fill out on my history and then I will talk to a nurse for an interview to make sure Dr. Akin is the right dr. to help me. I sure hope he is because I've exhausted my options around here.

Good night and thanks for listening  

Kristi

Hi Kristi

Mine is a barely house trained teenage monkey . It is not to be trusted as you may be able to see what its hands and feet are doing , but not its tail . Which needs close attention and clearing up after . That is day to day  . If you annoy it , well be prepared for chaos .

I got this from the leader of the yahoo IA group . It works for me

I call shock - full monty's .

I am a work in progress Just a year ago I was letting my pride direct my choices. I ahve an inflatable bath chair , to lower me in and out . I came to see my children and left it behind . The result was a cut knee when I hit it on the taps . That was the moment i accepted I needed the kit and not let my desire to look normal , let me put myself in a hard situation The chair is amazing , its air filled and very comfy . My new one doesn't make farty noises . My inner 12yr old is sad about that , but I can't have everything I suppose

Sandi , thanks I have those moments

Jose