momdi

No clue if this would be helpful to you Morgan with your unique set of problems, but when Mike was recently in the hospital for a week and couldn't get anything down, they finally (after reglan-bad, bad) called in a neurologist who prescribed mestinon.

I guess it's used in a lot of POTS patients for its parasympathetic action, but it's also used in patients with myasthenia gravis for difficulty swallowing and to help avoid choking. Anyway, after advising Mike that he'd need to go to a nursing home, or get a feeding tube, or get an iv line, this was a true lifesaver.

HI Charmin,

So sorry to hear of your eating problems. Being able to eat is something we all take for granted and any difficulty eating is so frustrating..

My son just got home from the hospital for dehydration and low potassium following a bout of gastroenteritis. Two weeks later, he's slowly graduating back to *real food*.

At the hospital, they checked all his enzymes as well as an endoscopy and his gall bladder to be sure all that was ok. Just be aware that a gall bladder ultrasound is not sufficient to diagnose problems - you need something called a HIDA scan to be thorough.

Some posts here helped us to understand that low potassium, even the low side of normal, contributes to nausea, so you might want to have that checked also. Especially since you're not eating very much, that seems possible. Gatorade and Traderade (at Trader Joe's) and Emergen-C packets are all good liquid sources of potassium.

After talking with a nutritionst, we realized that his problem was multi-faceted - difficulty swallowing, feeling full, nausea. The nutritionists seem to parse these things out a bit better than the docs. Our meeting with the nutritionist helped to understand the swallowing part of the problem. To the docs, it was all *nausea*, and they didn't understand why there was still any problem since he was getting the zofran.

He's on zofran for the nausea and mestinon for the swallowing and fullness. Significant improvement from both.

He's had good luck with gingerale, cans of soup (Soup at Hand by Campbells are easy) - especially creamy tomato, crackers, rice pudding, mashed potatoes, and cheese quiche. The nutritionist was able to give a list of ways to increase the nutritional density of foods - nothing magic, but some good ideas that you don't automatically think of.

In my recent posts about Mike's illness, we got a lot of helpful info here. Seems that these eating issues are pretty common with POTS. However, I haven't seen them much discussed in any of the literature, except in very general terms, such as eat frequent small meals.

Best of luck to you in this frustrating struggle.

Yeah! Mike is finally coming home after a week in the hospital, with zofran, inderal, and mestinon. This seems to be very useful for helping him to get down food and liquids, though he still continues to feel full with just the smallest amounts.

The hospital also called in a neurology consult who seemed to know about POTS - shocked! He's the one who prescribed the mestinon.

What's been your experiences - good or bad - with mestinon? I've used the search engine here, but while many of you seem to be on mestinon, I couldn't find many posts discussing it.

Thanks,

Dianne

Thanks to all for your suggestions for my son Mike who is (still) in the hospital with dehydration, hypokalemia. He's just now coming out of a pretty deep potshole and starting to take fluids and a teeny bit of food again.

Amazingly, people here have been interested in learning (just a little - don't get too excited) about his POTS. And the neurologist they called in actually prescribed mestinon

Anyway, my question is that he's still not able to take in very much by mouth. Of course, he's been in hospital a week and they're quite eager to kick him out - suggesting everything from nursing homes to tube feedings to parenteral nutrition. It would probably help if he could just have IVs at home for a week or so for the fluids as he's able to gradually increase his tolerance to eating and drinking. I notice that a lot of you list IVs under your treatments. How do you manage to do this at home? Details please.

And what kind of luck have you had with mestinon for helping food to digest instead of it just sitting in your stomach?

With a grateful heart,

Mike's Mom

Dianne

V8 juice - 800 mg/12 ounces

If you can get to a Trader Joe's, they make a yummy rice cracker (presumably gluten free - but better check the label) that is pretty salty, that my son loves. Unfortunately, none in my cupboard right now or I'd give you the details. They come packaed in a small, clear bag and are Trader Joe brand.

Dried beef in a jar - found in the canned meat/tuna section in the grocery store, is a virtual salt factory.

I need some help. My son is in the hospital right now with nausea, dehydration, and low potassium. I have a lot of questions.

The ER in Phoenix was overloaded - 6 - 7 hour waits just to see the doctor, 2 nights in a row, and no beds to lie down, just wheelchairs. Of course, he could not tolerate being upright in the wheelchair, and certainly not for 7 hours. The hospitalist doc suggested we write to the director of the ER and maybe that might help with future episodes. Any suggestions as to what to say? Anyone had any luck doing this?

He has been increasingly nauseated over the last 2 - 3 weeks and today hasn't taken anything by mouth, even with IV phenergan. He's always had intermittent nausea with POTS, but nothing like this. Suggestions?

On top of the dehydration, he has low potassium. It was 3 the first time- they gave him 2 IVs with K and sent him home. Two days later, back to the ER, and it was down to 3 again, so they admitted him Friday night. His only Rx is inderal. The doc wants to start him on oral K, which is going to be pretty tough since he's still so nauseated. I see a lot of old posts of people with low K b/c of Florinef. But he doesn't take this. Is low K somehow connected to POTS? Do you have better luck with the pill form or powder/liquid?

Sorry for so many questions. Thanks in advance for any and all help.

Dianne

Some people are helped with a variety of personal odor issues by taking chlorophyll tablets or liquid internally. Nature's Way makes a mint flavored liquid.

Chlorophyll is just the green pigment found in plants, so it shouldn't cause any problems with dysautonomia or anything else. The Natural Medicines Database lists no adverse reactions, no contraindications, and *likely safe when used orally*. HOWEVER, you know how reactive you all can be, so it's always best to start slowly with a low dose to be sure.

I'm a nurse who used to own a health food store. One thing you might try is homeopathy, which these days, is sold almost everywhere, although the chain stores will have a smaller selection than some health food stores. You can also buy online at places like drugstore.com, cvs.com, walgreens.com, etc. Some brand names are Hyland, Boiron, B and T.

Homeopathy is an FDA approved over the counter drug. It will always have some form of the word *homeopathy* and the NDC (drug registration) number on the label. Homeopathy has NO side effects and is generally cheap, about $10. The products will be labeled for your specific symptoms.

For some people it works great, for others not at all (sound like allergy meds???). Some pharmacists think they don't work at all-but that's their problem. There are also homeopathic nasal sprays which do not have the rebound probems. Also some great eye drops. When you take the pills, dissolve them under your tongue - do not swallow. They're usually made with a small amount of milk sugar - lactose, so avoid if you're allergic to lactose (but remember, you're doing this sublingually, NOT digesting it in your GI tract).

Do not confuse homeopathy with herbal products - not the same at all.

Btw, if you travel or live in Europe, for example in the UK, Spain, France, Belgium, many of the pharmacists are also licensed as homeopathic pharmacists and you will see notice of this in their store signs - eg, *homeopathica*.

WW2,

Like Poohbear, I agree that this condition is in the realm of neurology, as the cardio dysfunction is only one of many many body functions controlled (or miscontrolled) by the ANS.

While I agree that most neurologists aren't capable of treating this properly, I strongly feel that the best docs to try to understand the condition are neurologists who choose to specialize in the ANS. For all of Dr. Grubb's contributions, and they are truly monumental, imo, the next breakthroughs will be by neurologists who will be wise enough to build on the work of Dr. Grubb and others.

My son saw Dr. Low at Mayo and I think it was very helpful. Helpful suggestions and medication, but no magic answers. He certainly gave us a greater understanding of what's going on. You can search this site for a more detailed earlier post I made.

I remember reading somewhere that perhaps he doesn't take patients with CFS, so you might not want to mention that until you show up at Mayo (did I say that???) I think this is odd b/c he diagnosed my son with POTS and CFS - I'm a nurse and I don't see where he meets any of the CFS diagnostic criteria. I've also heard that Low turns down 80% who try to get an appt. Don't know how much of this is true or internet hearsay.

I think since Low's own son has this condition (this I do know, as he told us directly), he's probably more driven than most docs for a deeper understanding. They're also running a research study right now - to test DNA and follow the progression of the condition - so that might be offered to you as well, if you fit their study criteria.

Melatonin can affect blood pressure and heart rate, so I would sure go slowly. Maybe start with .5 mg and work up gradually. Maybe talk with your pharmacist about this in light of your other meds.

These are known side effects, published in the Natural Medicines Comprehensive Database. Your pharmacist will have a copy.

BLOOD PRESSURE: Melatonin can increase blood pressure in patients treated with antihypertensive medications. Immediate-release melatonin 5 mg at night in combination with nifedipine GITS (Procardia XL) increases systolic blood pressure an average of 6.5 mmHg and diastolic by an average of 4.9 mmHg (6436).

HEART RATE: Melatonin in combination with antihypertensive medications can increase heart rate. Immediate-release melatonin 5 mg at night in combination with nifedipine GITS (Procardia XL) increases heart rate by an average of 3.9 bpm (6436).

Morgan617,

Im not sure that its always true that hypertensives cannot have salt. If the hypertension is a compensatory response to low blood volume and low blood sodium, then taking in more salt will actually reduce the BP (as explained to my son by Dr. Low at mayo) because it increases the blood volume and the body is no longer vasoconstricting in order to compensate, so the blood pressure actually goes down. Does that make sense?

momdi

Some people get relief with DGL - the *safe* form of licorice. I think Dr. Andrew Weil writes about this on his website. For canker sores, the chewable form seems better than the capsule form. Unfortunately, it tastes like licorice.

Linda,

Insurance will pay for a nutritionist if your doc prescribes it. Since you have DM, that should be pretty straightforward. Docs tend to think you don't need a nutritionist because they think they have explained it all, but I disagree. I've convinced many people to see one and they all come back very grateful.

Try for 1 to 3 sessions. Try to talk to the head nutritionist at your doc's hospital and get a recommendation for one who can *think outside the box* so you get a session that's really useful rather than just a recitation of nutrition basics 101.

Dianne

Hi Janine,

Some companies make a liquid form, but it's usually the HCl, not the sulfate form. IMO, the sulfate form is better. A number of companies also make a capsule which will be easier to swallow. The downside is that there's about a 2:1 ratio of capsules to tablets, that is, for the same amount in one tablet, you'll need to take approximately 2 capsules. NOW and Solaray are 2 brands that come in capsules.

Although we know that ANYTHING can affect POTS, I can't imagine how or why glucosamine would be likely to do so.

Happy that it's helping. Fish oil capsules can also be helpful for joint pain as well as good for so much other stuff as well.

Dianne

The Cleveland Clinic is consistently rated #1 in the US for cardiology, some people think it's #1 in the world. I'm from Cleveland, now live in the Chicago suburbs, and recently knew someone who had a lifetime low HDL, who traveled to Cleveland to be followed by one of the Clinic's preventive cardiologists. BTW, one the things that they prescribed to her is niacin. It actually used to be widely used as a cholesterol lowering agent before all the statin drugs came out, but it also has the effect of raising HDL. Although you can find niacin anywhere, I would not try this by myself.

BTW, one of the early *pioneers* of looking beyond cholesterol and studying markers like CRP is at the Clinic - Steve Nissen - the other being Paul Ridker of Harvard.

There are so many cardiac risk factors - I think the statistics are that 1/2 the people with heart attacks have *normal* cholesterol. I guess my point is that the current thinking is to look at crp, as your doctor did, as well as LPa (pronounced: L - P - little a), and particle size. If I had a very low HDL, I would want to get a consultation with a preventive cardiologist. Great news on your CRP, but I would want to know more.

Dianne

Hi Julie,

I was a little confused by your post. It's good to have a low CRP - yours sounds great!

Please see my old post on fish oil - if you're going to do omega 3s for lipids, please consider doing fish, not flax.

The clinic is a fabulous place for cardiology, as you must know. Try to see a preventive cardiologist and they will evaluate your particle size as well - far more important than just the numbers that you currently report.

Good luck!

Thanks so much for your responses. This forum is always so helpful.

There's so much indigestion with POTS that it's always hard to sort out, but that's worth giving some thought. He's taking it with some cheese as we read that protein enhances the absorption.

I checked with a friend of mine who has lupus and she also had chest pain when she was on Inderal. I'm a nurse and I can't understand the mechanism that would *cause* chest pain as it's often prescribed to relieve chest pain. But with POTS the usual body mechanisms are so backwards, who knows???

The Inderal is dropping his standing pulse into the 90s, so that certainly is a lot better, and his laying down pulse is in the high 40s, so not too bad. And his blood pressure is improved too. Praying that the chest pain will pass.

Thanks Gena,

Dr. Low started my son on Inderal 10 mg, 3/day, but he started slowly, 1/day, and is now up to 2/day. He's had some intermittent chest pain that's strong enough to stop him from doing whatever. He doesn't have a cardiologist. He just flew back home today (following our trip to Mayo), so hopefully he'll be following up with his PCP there soon.

Chest pain is listed as a *rare* side effect. I was just wondering if this was something that might occur more commonly with people with POTS.

Has anyone had chest pain when they started on Inderal or other beta blockers?

Cyberpixie,

Good point about not taking too much water at once. It's so easy to slip into the *more must be better* mentality. Dr. Low's recommendation is for only 16 ounces of water, but quickly.

I have a question about the caffeine. Do you have high neurotransmitter/norepinephrine levels? I believe it would be called noradrenaline in the UK. I'm just wonder ing if caffeine is ok with that?

Thanks,

Jenn202,

Can you do lower body weight training with the Total Gym? Is that it's brand name? Does it take up much space? Are they easy to find?

Thanks,

I guess I didn't make myself very clear, but I think that is Dr. Low's point about building up the muscles of the lower body. I've heard it explained that the leg muscles function as a pump, essentially as a *2nd heart*. To quote from Dr. Low's handout:

On standing up, most of blood content gravitates to the veins. Veins have poor tone and are encased in muscles, which generates a pumping action when the subject contracts the muscles, as in walking. If the strength, bulk and tone of the muscles are increased ( by resistance or weight training), then contracting the muscles when the patient stands up will result in more blood returning to the heart and the better maintenance of BP.

My son has a pool in his yard and his favorite exercise is just walking around in it or using a kickboard. I think the water compression helps too. But unfortunately can't do that year round.

Vanessa,

My son had a very encouraging visit with Dr. Low. I think how helpful you find him to be might depend on how much information you already have. We had very little, other than one TTT and a POTS diagnosis, and the information he was able to provide from his testing was very helpful.

Seeing all your other problems, I have one suggestion for you. If you want to see consultants in other departments, let them know when you first meet with Dr. Low's and his resident on your first day there, or even better yet might be when they contact you to set up your appointment. For example, if you want to see an orthopedic consult, they'll schedule that into your visit. Make the most of your time there.

Mayo is a well organized place and everyone is cheerful and efficient. I call it the Disneyworld of medicine, and as a nurse myself, I can be pretty critical of medical services. If you need a wheel chair to get around, you can rent one from the service desk at the subway (underground walkway) entrance to the clinic.

Dr. Low suggested 3 months of strength/ resistance training for the large muscle groups of the lower body, 10 reps, 1 to 3 times a week, BEFORE trying to move on to cardio.

Try doing a search on licorice root or DGL on this site for some past discussions.

Health food stores sell something called DGL. It's licorice root with the glycyrhizin removed - glycyrhizin is the part of licorice that causes retention of salt and water. It's safe and soothing and healing to the mucous membrane lining of the GI tract. The chewables work well, but taste like licorice. There's also a capsule if you don't like the taste. Solgar is one manufacturer of capsules. You can read about it online in many places. I think Dr. Weil is a big fan. You can try searaching his site for lots of info.

When I owned my health food store, customers used to rave about this product. You take it before each meal and at bedtime. After awhile, most people would take it just once a day, or even occasionally, whenever they had problems or were going to eat a known troublemaking food.

Licorice candy is NOT the same thing - it's usually sugar and anise oil, not true licorice. Check with your pharmacist for interactions with your other meds, although I think it's unlikely, you want to be sure. DGL will be written up in the pharmacist's reference books.