POTTS vs wisdom teeth

[cjvision]

I am inquiring to see if anyone has had their wisdom teeth pulled while under the influence of POTTS disease? And if so did you go with a local or full anesthesia. Did you have fluids intravenously previous to the surgery?

[dysautomom]

Sorry out  of touch.the B6 helped lower her homocysteine.dont know the mast cell cocktail.they gave her an ti histamines when she was little, some made her have side effects.now we take methyl b 12 to eliminate histamine.I tried b2 for awhile but I think my headaches are CMV reactivation related.I really have better luck with l lysine which suppresses the herpes family.my daughter has mild Chiara syndrome and the neurologists said it was caused most of her headaches.of course the chronic dehydration worsens that.she has to drink smart water everyday.she usually drinks one large bottle 50 OZ each day,unless very hot and needs more.I am sure her mast cells are way off with idiopathic hives.when she was younger she would get hives with heat or cold that turned into heat,then her body temperature would plummet and she went hypothermic.once she went to 85 at highschool.scared the school nurse.my daughter was so out of it she only remembers 92 but that what it went up to by the time I got there.after that the nurse would let her get into her car during a fire or bombscare,because it's quite cold in md in the fall and winter.I have heard the b2 for migraines.have you had any luck since?the big thing that improved my daughters health was getting her insulin resistance under control with metformin.she lost all the wt. She gained when they put her on prednisone and beta blockers.they made her way sicker and she actually fainted more on the beta blocker then she did before.she has learned to squeeze her legs and elevate them to counteract the pooling.and the smartwater and choline for her genetically low choline.her job is flexible w letting her work from home part of the time and some work online.her liver enzymes improved dramatically with the metformin and wt loss too.she had the first ever normal test since we starting keeping track.she's not cured.she still has bouts of fatigue and fibro type pain.and the choline defect but she is more functional in the past 18 months than she has  ever been since she was taken I'll in her mid teens.

[Heiferly]

I'm happy that you seem to have had such good experience with chiropractic care, but I just have to add that chiropractic is not part of the standards for best practices treatment (or testing) for dysautonomia, in addition to which there is no scientific evidence backing chiropractic as a treatment in dysautonomia. Alternative medicine, including chiropractic adjustment, certainly does provide benefit for some patients, but clinical trials have not proved it superior to placebo at this time.

Anyone who has a question about what diagnostic assessments or treatments are appropriate for them should inquire of their primary care physician or general practitioner.

Best wishes, H.

[Nanna48]

For anyone considering oral surgery - what about a consultation with a cranial osteopath before proceeding? Interesting that I had a big molar extracted from left upper palate and felt better!!! My vision cleared, had more energy- pretty crazy. But my sacro-occipital chiro said it must have helped move cranial bones to better position. The positive effects didn't last. Chiro commented that my dura is very tense and that probably distortions of the sacrum and pelvis just pulled cranial bones back to old position.

[Heiferly]

Yeah, I have no idea why some doctors are so reluctant to push IV fluids, but it's something we hear a lot. I finally got a central line last year, and have been on home hydration therapy with excellent results. I have blood labs that are back in the "normal" range after nearly a decade of being off.

Did they assess your daughter for mast cell issues, such as MCAD. That's one that can go hand-in-hand with dysautonomia as well as mito. I'm on the MCAD "cocktail" myself, with considerable reduction in my hives/flushing. The body temperature issues are also quite familiar to me, though I am much more prone to hyperthermia than hypo.

Do you recall whether they did a Daxor blood volume test on your daughter? Considering the electrolyte abnormalities they found, that would be a good test to have at some point. It can find hypovolemia much more accurately/sensitively than the standard blood tests used by most hospitals to assess if there's low blood volume. (This is because the standard test in the US for blood volume is simply a ratio of the liquid portion of the blood with the particulate portion of the blood, red cells in particular if I recall correctly; thus, if a person is deficient in BOTH plasma volume and red cells, the test will erroneously come back "normal.")  

I'm also on a rx for B6 (and a number of other supplements that support mitochondrial function). Did your daughter notice a major symptom improvement with the B6? I'm sad to say I don't feel it has made a huge difference for me. I was told today at the neuro-ophthalmologist that I need to add a high-dose B2 supplement as that may help with my migraines. Has your daughter ever taken B2, and if so, did she see clear improvement with it?

Best to you and your daughter, H.

[dysautomom]

When my daughter had to have oral surgery,she had not yet developed POTS yet but she already suffered from idopathic hives and the inability to regulate her body temperture while having an attack of hives.We also ran in doctors along the way who ressisted the extra fluids but her oral surgeon was great.He not only did that but he performed the procedure in a hospital per my request.My daughter has full blown mitrochondrial dysautonomia and is thirty three now.A 24 hr urine study at NIH revealed she loses electrolytes thru urination too quickly.She combats this by drinking at least one large bottle of smart water a day,more if she is ill.She has a choline transporter defect and now supplements choline and bioavailable B6 among other things.NIH  did an amino acid  panel and vitamin tests so we know her exact defiencies.Her choline needs to be tested time to time.The anesthetic advice above is excellant,we did not have access to that information 20 years ago.Best Wishes

[Heiferly]

http://www.dynakids.org/Documents/Brooks_April_2006_JADA.pdf


It's a bit long and detailed, so if your dentist doesn't seem to want to read something so involved, tell them at minimum to thoroughly read the section on dental treatment considerations. Best, H.

[cjvision]

Thank you, that helps a lot as there are no decent neurologists for her here in Las Vegas. Will be glad to get out of here. If you know where the article is can you send me a link or title? That would be great, thanks a million, CJ

[Heiferly]

I had mine out under "twilight anesthesia." I believe the medicines used were laughing gas, versed, plus pain medicine. I did have orders for them to run extra fluids, but someone thought they were "too smart" to follow orders, so I ended up having to be hospitalized for dehydration a few days later.

That said, I didn't have any major complications so that's good. I would recommend doing it under local/twilight anesthesia rather than general, as there are much less risks that way.

The biggest thing you need to know is to tell them POTS patients have to get local anesthetics WITHOUT EPI. Most local anesthetics come with epi because it makes them last longer and be more potent, but epi is a relative contraindication in POTS, so it should be avoided except where needed for emergency treatment. If you need documentation for the dentist/oral surgeon about the local anesthetic and other aspects of caring for POTS patients, let me know and I'll try to dig up the journal article for you.

Best, H.