flyingsquirrel

I'm on a beta blocker and have severe allergies (and an epi-pen). You're right that they're not an ideal combination, but I need the epi for anaphylaxis and I've tried everything under the sun for my heart and beta blockers are the only thing that keep me functional. The tradeoff is that when I do have an allergic reaction (or an asthma exacerbation), they are more serious and more difficult to treat. You might want to talk to your doc about prescribing a glucagon emergency kit. They are designed for diabetics to raise blood glucose when they can't take sugar orally, but it is also the drug of choice for beta blocker overdoses...which is basically what is happening when you are in anaphylaxis and the beta blocker is blocking the epinephrine. a couple of caveats and things you should know: - glucagon is really expensive (but no more so than epi-pens) - it comes in a kit with a vial and a needle...you need to draw it up yourself and give yourself the injection (intramuscular) - every ambulance in the US should carry at least 2mg (2 kits) - every paramedic and doctor should know this, but their pharmacology classes may have been a really long time ago, so don't be afraid to remind them...nicely. see the excerpt below. From uptodate.com (one of the most used professional medical references): Glucagon for patients taking beta-blockers — Patients receiving beta-blockers may be resistant to treatment with epinephrine and can develop refractory hypotension and bradycardia. In this situation, glucagon should be administered because it has inotropic and chronotropic effects that are not mediated through beta-receptors. A dose of 1 to 5 mg in adults (in children, 20 to 30 micrograms per kilogram to a maximum of 1 mg) administered intravenously over 5 minutes is recommended. This dose may be repeated or followed by an infusion of 5 to 15 micrograms per minute. Rapid administration of glucagon can induce vomiting; therefore, protection of the airway, for example, by placement in the lateral recumbent position, is important in drowsy or obtunded patients.

I like the nuun tablets that you dissolve in water...one tablet in 16oz/500mL has 360mg sodium, 100mg potassium, 25mg mag, and 13mg calcium. They come in a ton of different flavors and have no sugar. http://shop.nuun.com/nuun-active-hydration The only downside is that they are a bit pricy if you are drinking 2+ every day. My alternative is to make a big pitcher of refrigerator iced tea (any kind you want...it's just to mask the taste) then mix it in a water bottle with baking soda each morning. (1/2 tsp for 1L, 1/4 tsp for 16oz/500mL). Baking soda is sodium bicarbonate...table salt is sodium chloride. All I/you need is the sodium. We don't need the extra chloride (in fact, there are some in the medical community who argue that excess chloride is harmful...at least when taken IV). Bicarbonate can be both manufactured and excreted by the body, so a little extra won't cause any real physiologic changes. FYI... 1/4 tsp table salt (NaCl) contains 581mg sodium 1/4 tsp baking soda (NaHCO3) contains 308mg sodium

I was on florinef briefly when I was little and had a bunch of side effects (I think mostly swelling, potassium related). I was taken off it and have been doing licorice tea ever since and it has been working well with no real side effects. I do supplement with blackstrap molasses (for potassium, iron, mag, and calcium) so I don't get leg cramps/muscle weakness (and because I don't eat red meat).

The pineal gland has some important functions in small children, but in adults, not so much. It doesn't suprise me that 100% of MS patients showed calcification since most people with MS are middle aged. If you took any sample of middle aged people and looked at a CT/MRI of their brain you would see calcification of the pineal gland in very close to 100% of them.

Calcification of the pineal gland is a NORMAL age-related change that usually occurs in the late teens-20s. Some radiologists make a note of it, some don't...it's kind of like saying "there's gray matter and white matter and ventricles"...they're just naming all the normal things that are there.

Carotid sinus massage is no longer recommended for anyone as it can dislodge plaques from the carotid arteries which can then lodge in the brain and cause a stroke. If it is sinus tach and not SVT, vagal manuvers probably won't help.

I've had IST since I was an infant. FD also runs in my family, so there's some thought that there might be some sort of carrier syndrome...

Well...Mestinon (pyridostigmine) is a peripheral cholinesterase inhibitor...it really doesn't have any central activity which is what this study looked at. Central cholinesterase inhibitors (like Aricept and rivastigmine) are used to treat Alzheimer's Disease.

I use regular salt (either iodized/table salt or kosher salt) in my food but for suplementing/drinking, I use baking soda (sodium bicarbonate). With the amount of sodium I consume each day, I don't want all that excess chloride. Also I like the taste of baking soda in water better than table salt in water.

Stash has a licorice spice tea that I find pleasantly sweet. I've never had the traditional medicinals one so I can't compare. I usually make a big pitcher of cold brew iced tea (5 tea bags in 1/2 gallon) that lasts me about a week and sometimes I add a little milk to it. I don't really like sweet stuff and I've never been bothered by this brand.

I usually just take a swig of molasses from the bottle in the morning and before bed...I guess I'm getting about 2 T. You can also mix it with warm milk...I never liked chocolate, so my mother would make that for me instead of hot cocoa. Also, 600mg K = 15 mEq K ...talk to your doctor about how much dietary K you're getting, see where your levels are, and see if they want to adjust you suplementation.

Tachycardia can absolutley be a side effect of zyrtec or any other antihistamine. This can also be an early sign of an antihistamine overdose. Antihistamines block M2 receptors in the heart, preventing the heart from slowing itself down. While zyrtec is a 2nd generation/selective antihistamine (and should therefore only have activity on H1 receptors), at high enough doses any drug 'loses' its selectivity. Chronic antihistamine use can also cause dehydration, which can lead to tachycardia.

Who told you that you had to stop taking the beta blockers? As long as the allergic reaction wasn't to the beta-blockers themselves, there is no reason that you can't keep taking them, even with an epi-pen perscription. I have severe allergies, carry multiple epi pens, and am on beta blockers. A couple of things you should know in general... Because of the beta-blockers, you MIGHT need more frequent dosing of the epi-pen should you have an allergic reaction. (This is why I carry more than the recommended two doses.) If the epinephrine is not effective, glucagon can be given in addition. (Glucagon is a hormone produced in the pancreas that is usually given in diabetic emergencies to raise blood sugar. It also works on a pathway that is independent of beta receptors to increase heart rate and blood pressure.) Of course you need benadryl and steroids too, but those can wait a few minutes. It might also be helpful to have a medical alert bracelet and/or a wallet card stating that you have BOTH severe allergies and that you take a beta blocker. The wallet card can outline the exact treatment that you should receive. Feel free to PM me for the text that is on mine (and then clear it with your doc). I also have IST, beta blockers are the only thing that work for me, calcium channel blockers didn't really do much (although verapamil was better than cardizem), and now I take pyridostigmine along with a beta blocker so that I can get away with a slightly lower dose. An ablation is really the last ditch option for me. They have ok (75%) success rates, but more than half of those recur within a year, and a significant portion of those that do have long term 'success' need pacemakers. From what I've read, if IST and POTS occur together, an ablation is not recommended at all.

you can see all of this on an echo.

If you have FD, you might want to try to get followed by the FD center at NYU Medical Center (it's still open even though the rest of the hospital is closed). This is the only FD center in the US so they are used to working with people who are not local. FD runs in my family and I have several relatives with FD. My cousin's parents were told that she probably wouldn't live past her early teens, but she lived a full life into her late 20's. There is a much better understanding of the disease now and better treatment options, but they still can't predict who will have complications and who won't. Get a good medical team, take care of yourself (physically and mentally), try to get into some clinical trials (phosphatidylserine looks promising), and don't miss out on doing anything because you think it's too much of a 'long term' plan.

As others have said, both the thrush and the heartburn are most likely from the antibiotic killing the good bacteria in your GI tract. I get thrush if I even look at antibiotics (or steroids). I have found that eating yogurt once or twice a day when I'm on antibiotics or steroids will prevent thrush and GI symptoms. You can use any kind of probiotic you want, none of them have been shown to be any more or less effective than any other. I like yogurt because it tastes good and is avaliable everywhere...just make sure that you get the stuff that says 'live and active cultures'. (Most yogurt has this, but some of the super cheap stuff doesn't.)

Hypothetically, if you aren't excreting sodium because you are retaining it, then in POTS that's usually a good thing because it helps increase your plasma (blood) volume. However if you aren't excreting sodium AND your serum sodium is low then that could be caused by several things, including losing sodium through your GI tract (diarrhea).

This is in general, not POTS/dysautonomia specific... 24 hour urine sodium should be between 100-260 mEq/24 hrs (100-260 mmol/24 hrs) It is hard to interpret the urine sodium without any information about the serum sodium...high serum (blood) sodium and low urine sodium is a very different problem than low serum and urine sodium. I have a good chart around here somewhere... Alex - I can't handle as much table salt as I need, so I use mostly baking soda...all the sodium, none of the chloride (which I think is what bothers me).

No problem. Just to clarify, anaphylactoid reactions to morphine are VERY common in the general population (not just those with MCAS), they just usually take a minute or two to declare themselves...easily treated with benadryl, or prevented by pre-treating with benadryl before you have morphine. There are also opiates that don't cause any significant histamine release. Everyone is supposed to have a pre-op consultation with their anesthesiologist to go over anything that might be an issue during the surgery. Make sure they are aware (even more so than your surgeon) about any medical conditions (dysautonomia), medications, medication sensitivites, familiy history of anesthesia intolerance, etc. I don't know where you are or what kind of surgery you are having, but if you are concerned you might want to make sure that your surgery is happening in a large hospital (lots of other resources if necessary...hopefully won't be an issue) rather than a community hospital or outpatient surgery center. Good luck.

Morphine causes massive histamine relase (that's why it drops your blood pressure and causes nausea). If you have mast cell issues it is possible that is why the the anaphylactoid (not anaphylactic) reaction was so hyperacute. (Also, if the IV was already in, there is no way that a nerve could have been hit by pushing the meds.)

I stay away from bread and potatoes in any significant quantities as they seem to trigger junctional/ventricular arrythmias. The bread doesn't bother me, but I miss potatoes...

Benadryl has never been one of the major drugs associated with acquired long QT...it mostly just causes problems in overdose situations (and if you OD on benadryl you have some other problems that are equally bad as the arrythmias). Also, it is my understanding that even in acquired long QT there is a genetic/dispositional component. Most people can take erythromycin (a MAJOR cause of acquired long QT) without ever having a problem, but others seem to be very sensitive to its QT prolongining effects. The people who don't have a problem will probably never have a problem and the people who do always will. This does not mean that this will be susceptible to the adverse QT effects of another drug (droperidol, say) though. My point is that if you have been taking benadryl (or any other drug on the list) with no adverse effect on your QT interval, it probably will never be an issue for you...just don't OD on it.

Canadiangirl is absolutely correct. Aside from genetic causes, certain drugs are the major cause. While the absolute QT interval shortens with higher HR and lengthens with lower HR, 'long QT' is determined by the QT interval corrected for heart rate (QTc) which will not varry. (this is the measured QT over the square root of the R-to-R interval...but any EKG you have done will calculate it for you)

Here are the half lives of the meds you listed: cetirizine - 8 hours cimetidine - 2 hours alimemazine - 5 hours* (I don't have a good reference for this as it isn't avaliable in the US) After one half life, 50% of the last dose will be out of your body. After two half lives, 75% of the dose will be out of your body. Three half lives, 87.5%, etc.

there are two different kinds of CCBs...the kind that just lower BP (by vasodilation) and therefore can cause reflex tachycardia and the kind that vasodilate AND lower heart rate like verapamil and diltiazem. It sounds like your doc was talking about the first kind (dihydropyridine class)...in order to lower heart rate you need the other kind (non-dihydropyridines)...and of these verapamil has the greatest effect on heart rate. I feel your pain...I had to stop beta blockers because of severe asthma-like side effects so I switched to verapamil. Verapamil works for a lot of people, but I needed VERY high does to have any semblance of heart rate control and it caused some dangerous arrythmias so that didn't last too long. I'm now back on a very cautious dose of the beta blocker plus pyridostigmine....but I wish I could get ivabradine. Also, have you tried a non-selective beta blocker (metropolol is cardioselective)? In theory, they should control heart rate equally well, but for me the cardioselectives hardly work at all, while the non-selective beta blockers (like nadolol or propranolol) control heart very well. No one ever said we have normal autonomic nervous systems.