momdi

You can try prilosec which is now over the counter, but FIRST check with your pharmacist. I have GERD (but not POTS - I'm here b/c my son has POTS). Protonix helped me. There's a lot of advice about what foods to eat/avoid, but some recent research showed no across-the-board association with foods, but rather recommended avoiding whatever foods aggravate your own condition. And if you're "older", the treatment standards call for an endoscopy to document the extent of esophagitis and to rule out cancer. I agree w/ all the posts about get a new doc, but sure do know that is way easier said than done.

Thanks for your many comments and suggestions. How do you find a sleep specialist who is knowledgeable on sleep disorders other than sleep apnea and C-pap?

Our son, who's now 25, had an IEP. Though I resisted at first, this was really the best way as all of the teachers had to honor it and work with it. Without the IEP, we ran across the usual non-helpful attitude of "well he's going to have to learn how to deal with this sooner or later..." 8 to 10 years ago, not much was known about POTS aside from the orthostatic tachycardia and the need for fluids and salt. So he was sent off to school early each morning. He often fell asleep in lecture classes and had hour long near-syncopal episodes in gym class. If I had it to do over, I'd have pulled him out and home schooled him. If your child has any time of wakefulness during the day, a home tutor is a good idea to try, but Mike's "awake" time was so unpredictable, we didn't even fight for that. Plus he also had the constant "on edge" feeling that's typical of the adrenergic POTS, so I guess I would say that any solutions that you try would depend on the specific POTS symptoms. Bottom line, I would have been less accommodating to the school and advocate more for my son. But back then, great resources like DINET weren't around. Best of luck.

My son has had the usual POTS messed up sleep, specifically he seems to have a longer than 24 hour body clock. Neither of his POTS docs have prescribed a sleep med, though one suggested melatonin (which didn't work). Now we're trying a new primary care doc - in our desperate attempt to find one that "gets it" - and on the first visit, he prescribed xanax. He wants Mike to use it to get on a regular sleep schedule so that he can get back into school this fall (which I don't see as realistic - if only sleep were the ONLY issue....). Anyway, we're a little reluctant - xanax seems like pretty powerful stuff just to go to sleep. I'm a little concerned about the addictiveness. And also is it even possible to "change" a sleep clock that's longer than 24 hours? Thanks for any help...

When we saw Dr. Low at Mayo, his advice was to take as few meds w/ as low a dose as possible. More meds - more interactions - more side effects. That said, few meds is not the same as no meds. At that time, he prescribed just Inderal, and since then we've added Mestinon (and Dr. Low ok'd that one). So far, that's it. Plus lots and lots of fluid and salt. And much less stress since he's quit school. As a nurse, I always say - what is this med doing and how little of it can I take to have it do it's thing? I don't know that your goal should be "no meds" - I don't understand the absoluteness of that, but I do encourage you to use them as thoughtfully and intentionally as possible.

Both of the Mayo POTS docs have NOT prescribed anything for my son's sleep issues, but a new primary doc (at Mayo) wants him to try Xanax at bedtime. Anyone have any experience with this? BTW, Calms Forte is homeopathic, not herbal. So, no side effects or drug interactions as you might have with an herbal.

My son had good results with zofran, but I think his nausea started with low potassium. When the potassium was (finally) corrected, the nausea lingered on. Zofran definitely helped. Good luck.

When my son was hospitalized with low potassium, the dietitian recommended potatoes - she called them "potassium bombs". Th ough these can be a carb problem as well. Avocados are a good potassium source, and they are also high in fiber and loaded with good fats.

My son's current POTS doc (as well as Dr. Low) suggested exercise to strengthen the leg muscles and help circulation. What do you do? How do you do it? How did you get started? How well has it helped? Any other encouragement?

Dear Ernie, So sorry for this awful anniversary, but I am very grateful for you. I've dropped in on this forum now and then, as my 25 year old son has POTS, and you all have been mom-savers on so many occasions. And whenever I do drop by, you are one of the strong, consistent post-ers here. Just wanted you to know how much you are appreciated. Dianne

Hi, I'm wondering if this difficulty swallowing is all part of the whole dysautonomia thing - it seems to make sense. Would be a good question for one of our *expert* docs. Until we get an answer, all I can tell you is that my son developed severe difficulty swallowing while hospitalized last May for dehydration and low potassium. It would take him all day to get down 8 oz of liquid, and we all know that doesn't work for POTS. They were about ready to discharge him to a nursing home or put in a feeding tube, when a neurologist prescribed Mestinon. Mestinon is a drug that helps patients with myasthenia gravis swallow better. Some research has shown it to also lower the heart rate in POTS. It was miraculous. You might want to ask your doc about trying a low dose of this. You can search on this site for *mestinon* to get more experiences, including more details on ours. Best of luck, Dianne

My son has been told to do leg strengthening exercises. Does anyone have any specific suggestions?

The new neuro at Mayo Scottsdale recommended melatonin, 10 mg. But on this site I see that it might be a problem for those w/ OI. My son has the hyperadrenergic form of POTS. Any experience to share???

Karen, My son has the hyperadrenergic form of POTS and his new neuro recommended he try 10 mg melatonin. Have you personally tried it? What dose? I noticed a caution about melatonin w/ POTS on the info side of this website, so I'm hesitant.

My son (and we parents) learned a lot about his type from his work up at Mayo w/ Dr. Low. Found out he has low blood volume, low body sodium, and high norepinephrine levels, ie hyperadrenergic form. This knowledge was so helpful in understanding the symptoms and what works/doesn't work. Highly recommend you get a full work up w/ the full range of autonomic tests at a POTS center.

My son was hospitalized for a week w/ dehydration, low potassium, and nausea. As those symptoms gradually resolved and they treated the nausea with zofran, he still wasn't able to take in food b/c he wasn't able to swallow - a totally new symptom. They tried some nasty drugs to speed up his motility, when a neurologist finally came up w/ the idea to try mestinon. It worked! It's sometimes used for POTS, but it's primarily for myasthenia gravis. Don't know why or how, but you might want to consider this at a very low dose. I think you try it at 30-60 mg 3x/day, though those w/ MG take hundreds of mgs at a time.

Hi, Most people who get constipated from calcium (or just plain constipated) do very well w/ a formula that includes a significant amount of magnesium, eg, a 1:1 ratio of calcium to magnesium. Also, try calcium citrate, avoid calcium carbonate. I used to own a health food store, and my customers who tried this always thought I was a genius. LOL. If that doesn't do the trick you can even find a reverse formula, a 2:1 ratio of magnesium to calcium. In either case, try just one capsule at a time. Calcium and magnesium are very large molecules, so unfortunately, when combined, you don't get many mgs per cap or tab. You can work up to 500 mg of calcium at one time - more than that is a waste b/c that's hitting your maximum absorption. Good luck,

Does anyone know of a doc in the Phoenix area? Desperate. Many thanks.

My son has been on mestinon for a few months now. He went off for a day b/c his prescription ran out and experienced a very strong sensation of his heart pounding, over and above the usual tachycardia. Anyway, he only takes a half tab twice a day, which I think is 15 mg (though it's prescribed for 3 times a day). It slows his heart rate a bit (ie, just enough) and he doesn't have any real side effects. He also takes inderal 10 mg 3x/day. It certainly was a good thing for him, and I was really afraid of the side effects when he started it up. Hope it works as well for you. Like so many of the meds, you just need to try it and start very very very slowly.

could this be what Dr. Low calls *autonomic storms*?

Thanks unicornisis. Brilliant idea. When I worked in the ER, we also routinely tested a lot (not all) females. BTW, You would be surprised (I was) how many who *couldn't possibly be pregnant* were. And someone who thinks they have their period is sometimes miscarrying. IMO, drug testing doesn't make any sense. Mike's PCP thinks his info card should start out with *rare autonomic neurologic disorder*. The *rare* part seems over the top to me, but maybe the rest is a good idea. It's probably best to avoid the acronym POTS, although all the ER docs in Phoenix claimed to be familiar with POTS. Maybe they thought it was TB - LOL. Of course, the issue was to get somewhere to lie down and something to drink to make the 6 hour wait tolerable, and that means somehow educating the triage staff. Like many with POTS, Mike doesn't actually pass out, though he probably wishes he could sometimes. In my experience, ERs don't take dehydration and electrolytes seriously enough. I had a friend who was admitted to the ER where I used to work (not on my shift) with dehydration and electrolyte imbalance following the flu. They never really questioned why the labs should be so far off on an otherwise healthy 37 year old woman. Anyway, she had undiagnosed Addison's disease and had a cardiac arrest and died during the night. A dose of steroids would have saved her life. One more question - has anyone had any luck with establishing some type of protocol with your local ER? That there is some type of written instruction from the ER director to guide your care?

Thanks to each and everyone of you for your great suggestions. I'm a former ER nurse myself and understand well the priorities of an ER. My biggest goal is just to be sure he gets to lie down and NOT to have a repeat experience where he's expected to sit upright in a chair, which was absolute torture for him. And taking away water from someone who's dehydrated for 6 hours, even if they're nauseated, imo is a *duh* medical moment. So he vomits, so what - give him an emesis basin or a bucket. (sorry for the vent). One kind nurse continued to bring him ice chips while he waited in the hallway, but begged him to tell noone. Alexia, Mike has been to Mayo too. How did you manage to get the card to give to the ER? This sounds like the best. BTW, it's amazing to me that 3 people on this little bitty post are 23 years old.

Mike's visits to the ER last month for dehydration and low potassium were a nightmare. Here in Phoenix, with the rapidly growing population, the ER capacity just can't keep up. The first time, his roommate took him to his doc's office, where the PA ordered an ambulance. All the hospitals were on *divert* status with long waits, so there were no good choices. When he got to the ER, he was put into a wheelchair(!) and told it would be 6 hours before he even could see a doc. And they refused to give him liquids since he was nauseated. Despite the eventual IV and potassium treatment, he was back in the same potshole of dehydration and low potassium the next day. His doctor could not order him to be directly admitted, because the hospital was still full and ambulances were on divert status again. So, one more time in the ER, waiting (again) 6 hours to even see a doc. The triage people were really nasty about insisting that he had to walk into the triage office and SIT UP in a chair to be evaluated. He was finally admitted for a week of treatment, but that's another story. So... Mike's PCP wants us to write a letter of complaint to the hospital administrator and the ER director. Hard to evaluate if this would be worth the time and the emotional effort. The PCP also suggests that we write out some kind of a brief descriptive card about POTS that Mike can hand to the ER people. I looked at the card that comes with the DINET bracelet and don't think that quite does the job. My question... Is there an information card of this kind already out there? Has anyone else had any success with these ideas? If so, please please share. Many thanks for any and all help... Dianne

Thanks so much for writing about the book by Dr. Goldstein. I ordered 2!

Hey Morgan, I think you replied to my post, saying *someone mentioned midodrine*. If it was me, I mentioned mestinon. I don't think it affects BP as my son has high BP and it hasn't made his any worse. Actually, since it has parasympathetic activity, if it does anything to BP, it should lower it. Try this site... http://www.mestinon.com/info.jspf Mestinon was the miracle drug which got him out of the hospital last month. They were threatening a feeding tube, a pic line, or a nursing home (nice choices ), when they finally called in a neurologist who prescribed the mestinon. He was able to start swallowing food again almost immediately. His problem followed a mild case of gastroenteritis (with a heavy case of a POTS reaction), so it sure isn't the same as esophageal strictures, but you never know. Amazingly, Mike hasn't had any of the side effects to date, though he is taking a low dose - a 30 mg tab split in half, which gives him a dose of 15 mg 2x/day. A yummy protein powder that has zero or almost no carbs and no *junk* is Solgar's Whey to Go, vanilla flavor. I used to own a health food store/juice bar and it was our most popular protein addin b/c it was so yummy and smooth, not grainy like some protein powders. If you could add some type of essential fatty acids, either flax oil or fish oil, plus some ice cubes, it would make for a nice high calorie drink. You could easily find it online or at a Whole Foods type of store or health food store that sells Solgar brand. Good luck Morgan. Hoping you make it through this one.