momdi

Thank you so much for all your helpful insights and suggestions! With a grateful heart, Dianne

Oh Meliss446, my heart goes out to you. I remember back when my son was in high school, we didn't know what was going on, and it was quite a challenge for him, and for us. Now he's studying engineering at college, and it's not easy. Hang in there! My point was that the medicine that works for one is a nightmare for another. SSRIs? Pro amantine? Mestinon? Beta blockers? It seems some people have low blood pressure, some high blood pressure. Some have high neurotransmitters, some normal. Low blood volume? Having these specific test results made a lot of sense in light of Dr. Low's recommended treatments. Before going, I was afraid that Dr. Low would just throw a lot of prescriptions at Mike and it would be a nightmare of trial and error and adverse effects. But he only prescribed a very low dose of one med. Everything else is lifestyle modifications - adjustments in salt and water, specific exercises, activity modifications - really, getting to better understand his own body and his own reactions to this condition. Low was very clear at giving numerous specific suggestions, which all made sense in light of the test results. The doctor's referral was made back in Sept. We heard from Low's office in October and they scheduled our visit for January. The timing was that we started on Monday morning with a work up by the resident/fellow, a brief visit with Dr. Low, then Monday, Tuesday, and Wednesday for various blood work and autonomic tests. Then a discussion Wednesday afternoon with Dr. Low. And that was it. If you would need to see other specialists, it would take longer. Oh, except Mike was invited to participate in a research study where he would come back next year and the year after that to repeat the tests and follow his progress and do some genetic tests. Angela has given some great descriptions of the tests - especially the *shake and bake* one where you go into the toaster oven and turn purple :-) If you need a wheelchair (we didn't) there are wheelchairs to rent at the Mayo clinic desk. Otherwise we stayed at the Residence Inn and it's about a 2 block walk to the clinic, all indoors, underground. Most of the tests are in 2 main buildings. Since the clinic is all outpatient, separate from the 2 hospitals, it doesn't cover too much ground. Hope you find this helpful.

HI, I'm taking my son in for an eye exam this week. He doesn't like how he feels when they dilate his eyes. Anyone else react to this? Any ideas what to tell the doc when he asks *why not*? Thanks,

Hi Meliss446, We just returned from seeing Dr. Low last week. Before seeing Dr. Low, my son didn't have any diagnosis other than POTS from 1 positive TTT. Don't know why he was chosen to be seen - my guess is because he's a male - but that's pure speculation. Dr. Low is thorough in his testing and we gained an understanding of the specifics of my son's condition WAY BEYOND anything we'd ever had before. Of course, we hadn't had much before.... Bamagirl, Dr. Low tests for both central and peripheral nerve problems and his Mayo bio page says he has specific research interests in peripheral neuropathy, so I would echo the others here - give him all your symptoms and the timing of their occurrence and trust to his expertise. There's a neurology fellow or resident who does the detailed history and physical, so be sure to tell him *everything*. He's the one who spends the time with you at the beginning. When Dr. Low comes in, he just summarizes what the resident told him to sure he's got it correct. After all the tests are done, that's when Dr. Low sits down to explain it all to you and give you his treatment plan. Good luck. I hope that your visit to Dr. Low is as helpful to you as it was to us.

Hi, It is so encouraging to hear of your perseverance. We just came back from seeing Dr. Low last week and he had one piece of advice in particular whenever you need a good 2 hours... Drink 16 ounces of water pretty quickly. Since most of you all drink huge amounts of fluids, this may seem like nonsense, but he says that there are receptors in everyone's body that will respond to this rapid fluid load and give you about 2 hours of upright time. My son tried it last night when he had to drive to a friend's house. He's not sure it helped or not, but I think it's worth at least a couple of tries. Good luck!

Hi Heather, My understanding is that anyone can self refer to Mayo - their website is pretty informative. However, if you want to get in to see Dr. Low, he requires a physician referral. Mike's doc sent a referral letter in September, and Mike was contacted in October when he was given his appointment for this January. We had a meeting on Monday morning with a neurology fellow, saw Dr. Low for a short period of time then, and were given a schedule for 3 days (really 2.5) of tests, then a wrap up appointment with Dr. Low on the 3rd day. We were very pleased. The specific tests that were done gave us a far greater understanding of the details of Mike's POTS. All Mike had ever had before was his holter monitor when he was 8 years old and a TTT at age 16, so we didn't really have much info other than *POTS*. All the downtown hotels are connected to Mayo by indoor walkways so it was very easy to get around. I think everyone in Rochester is trained by Disney World (joking) as they are all very cheerful, helpful, and efficient. I hope this answers your questions.

Angela, My son and husband and I just returned from Dr. Low and are feeling very optimistic after his explanation and suggestions. He's really big on exercise, especially weight training for the lower body. So happy to hear of your success. Keep it up! I agree that we need to hear more positive stories - NOT because I don't want to hear the negative ones, but because I want to hear the entire spectrum.

You pose a very good question. With greater research into herbs, our analytical western minds (mine included) want to dissect the components and actions of herbs by looking at them as if they're drugs, but of course they're not. There is a synergistic wholeness to herbs that simply doesn't exist in drugs that have been created to be *silver bullets*. So, taking out glycyrrhizin removes a lot of the fluid and water retention that one would think should be helpful for POTS, but there's probably something else going on with DGL that you find helpful. Herbalists also use licorice root as an overall tonic to strengthen the system, and it might be that DGL is helpful for this as well, even without the glycyrrhizin. There's actually quite a bit of data out there on licorice root as it's a *Commission E* approved herb in Germany for cough/bronchitis and gastritis. You should be able to locate the new PDR for herbal medicines to research this further. I have the PDR 2nd edition from 2000, but there's way too much to try to summarize here. Many supplement companies online have a *health library* section, and there's always IHerbs online. NOW Foods online has a health library section that gives some access to Herbalgram, IMO, the most reliable source for anything about herbs, but usually a bit technically written. Herbalgram is a subscription only journal, published by the American Botanical Council, but some articles are available through the NOW Foods website. Interestingly, there's one article there about a young man who's dizzy, had a positive TTT, and was taking Flourinef. It's titled "Using licorice root to treat vasovagal syncope". You might want to check that out. But as I said before, licorice root is potent stuff - be cautious. More is not necessarily better.

I think that misdiagnosis might have been my son, but looking back, I wonder if the SVT was really part of his POTS. Maybe it wasn't a misdiagnosis, but an incomplete diagnosis. His SVT was diagnosed by a cardiologist after wearing a holter monitor when he was 8 years old. The SVT rate was well over 200 for 15 to 20 minutes. The cardiologist (it was 1993 - no one seemed to know about POTS then) treated it with a beta blocker, Tenormin, and all was well until he outgrew the Tenormin dose a couple years later. Then his episodes returned. The issue with diagnosing SVT is that you usually need to wear a 24 hour (or longer) monitor to detect an episode, as they typically start and stop rather suddently. As mom4cem said, it's a matter of *catching* an episode. IMO, Nina's experience of SVT showing up on every ECG is not typical. Nina - I can't imagine having to struggle with ongoing SVT on top of everything else. If you put all POTS people on holter monitors, how many would have some sort of SVT? The high catecholamines that some POTS patients have could also cause SVTs. SVT is just one type of arrhythmia, as Morgan very nicely explained - maybe something else is causing it, maybe they'll never find what's causing it, but maybe POTS is causing it. My point is that SVT may or may not be associated with POTS, although as a nurse, it seems to me that the symptoms that you have with *just* SVT would occur only during or immediately after the SVT episode. OTOH, POTS seems to affect the better part of one's life. I would seriously suggest a work up with a true POTS specialist. We just came back from Mayo yesterday, and the information from the tests was a real eye-opener. Even though we have had the POTS diagnosis since 1999 and devoured everything we could read on the subject, we didn't really understand our son's situation until Dr. Low put together the results of 3 days of testing. Since so many physical things *could* be going on with POTS, it was hugely helpful to finally find out what was *really* going on in Mike's body. What a blessing that we're finally dealing with facts.

Licorice root is used by herbalists as an analog for steroids. Among other things, it supports the adrenal gland. It may help with dysautonomia because it helps retain salt and water. It can also help with energy - some people use it for chronic fatigue. It also can cause the same side effects as drugs that cause you to retain salt and water. Because it's an herb, some people feel that it's effects are more *soft* than drugs, but you still need to be careful. While it has many benefits, it also can have many interactions with both other herbs and drugs, so do your homework if you want to give it a try and watch for fluid retention. The potentially risky component of licorice is glycyrrhizin. If you want to use licorice to sooth the stomach (and it can be amazing for this) but don't want the fluid retention, use a de-glycyrrhizinated licorice, ie DGL. DGL would NOT be helpful for increasing your blood pressure if you have a dysautonomia however - you'd need the regular licorice root. One good brand of DGL is by Enzymatic Therapy. This is a chewable form and tastes like licorice. Solgar makes it in capsule form. The natural medicine guru, Dr. Andrew Weil, is a huge fan of DGL and you can read about it on his website. BTW, most licorice candy contains little or no true licorice. It's flavored with anise oil which smells and tastes like licorice.

Hi Evie, I'm a nurse and I volunteer at a clinic where I give vaccinations. The tetanus booster is the most likely to make your arm (muscle) sore, sometimes very sore. To minimize this, be sure to relax your muscle when you're getting the shot - do not tense your muscle! If you are able, take tylenol or aspirin. Be sure to move your arm afterward - don't hold it still just because it's sore. Most people get some level of soreness and it goes away in a few days. I wouldn't get it in my right arm the day before I had to write a lengthy exam. If you think your system will be overwhelmed by many vaccines, you should be able to make the argument for spacing them out. You might try contacting your last school attended or your doctor's office and see if they have your immunization records. I can't imagine anyone not accepting the results of a titer test, but they are usually costly, unfortunately. Having a titer is actually BETTER than having the vaccine, as it proves that you responded. Not everyone responds to vaccines, especially the elderly. IMO, yes there are anti-vaccination *zealots* who blame everything on vaccines (do we really need to resort to name calling of those with whom we disagree?); however, there is no reason to overload your system with unnecessary vaccines either. While vaccines are generally safe for most people most of the time, they do have risks, they are powerful (they do provoke an immune response) and, like all medications, should be used judiciously. I commend you for your caution. Good luck at school!

My son had his first symptoms at age 8, 3rd grade. I have had mild symptoms all my life - my mom used to explain it by saying that we had low blood pressure. but it never seriously interfered with my life or my mom's, other than not being able to stand in place for any period of time - eg, could not be in the choir, had to sit down in church etc. We are going to see Dr. Low at Mayo next week and interested to see if he will order any genetic tests.

Hey Traci Any update on this? We're headed to Mayo on Jan 16th and suspect this might be included in the work up there and would like to know what to expect. thanks,

Sophia, For those who want to try Valerian but are put off the the awful smell (I think it's a combo of old tennis shoes and a very dirty dishrag), try the Nature's Way brand, called "Nighttime natural sleep aid". It's compressed into little tablets that resemble tiny M and M's. Because it's a small dose, you can start low and see how you respond. The package label says to take 1 to 3, I believe. For those concerned about quality issues in supplements, this manufacturer runs an FDA approved facility. This particular product is imported from Germany - where supplements are manufactured with pharmaceutical quality. Dianne

Wow, I grew up in Parma Hts., so this was a surprise to see. I sent it to my sister who still lives in the area. It's hard to imagine a situation where POTS seems like the least of your problems, but this one might come close. I can't begin to imagine going through all these health issues PLUS POTS. I wonder if these people have a computer so that they can get support online.

HI, I searched medline for this, and apparently not published yet. These guys (gals?) seem to have done most of their research on metabolic syndrome and panic disorder. It's nice to see them stretching their expertise over to POTS. Back when I used to work in clinical research in the pharmaceutical industry, some of the best doctor/researchers that we worked with were in Australia. I don't know what it was, but they seemed to have bright inquisitive minds combined with really down to earth personalities. I think that intellectual curiosity is one of the most critical traits in medicine, yet unfortunately, sadly lacking in so many physicians. You are blessed to have this class of medical care. In my experience, I would agree with lthomas521 in an earlier post on the other thread who said that 14 out of 14 was compelling. While you need large numbers when you're comparing one treatment vs another, but in looking at disease progression, small patient numbers can be very powerful. Of course, nothing is 100% based on 14 patients (statistically, nothing is 100% based on 1000 patients - it's all just about the "p" values), but I find what you've presented about this study to be very powerful. Looking forward to seeing this article in print soon. We're taking our son to Mayo Jan 16th, so are optimistically hopeful that Dr. Low might be able to have some insights based on this research. thanks so much for sharing this with us, dianne

Julie, Thanks for your update. This has been a really tough few days for you. Glad to hear that you got in to see Bev, have a plan with the therapist, and have some meds to try. Thanks for keeping us updated. We are worried about you. This all really stinks. Just hoping for a better day ahead. Wishing you a restful night, Dianne

Happy Belated Birthday Melissa, I'm pretty new here, but I want to let you know that I sure do enjoy your posts, your enthusiasm, your dedication even when you feel really lousy, and especially your sense of humor Glad to hear that your parents visited. Always alert to how we can support our adult son in this crappy (can I say that here???) illness. Finally figured out that picking up carryout is way more better than trying to eat in a restaurant. We're slow, but trainable, and you've been very important in our training. If you ever ever wonder if your posts are helpful, let me say YES YES YES. Anyway, thank YOU for all your sharing. My husband and I are in a *learning* mode. Happy Happy Day! Dianne

Hi Julie, First, am so glad to hear that you are headed in the right direction. Keep focusing on where you're going, not where you've been. Fix your thoughts on good things. I know - way way easier said than done. Second, I have some additional thoughts for you. I used to own a health food store and we sold a ton of Coromega. Both my mom (lymphoma) and dad (parkinsons) took it before they passed away. My mom liked it mixed into her oatmeal. My dad liked his in applesauce. You can also eat it straight out of the pack. The taste is pretty good actually, but there's a bit of an oily aftertaste, imo. That can be helped if you refrigerate it (don't freeze it as it will separate and break down) and/or mix it and/or follow it up with some food. It's a great product and excellent quality. The best value is the 90 pack size. I'm sure you can find it in any health food store or online. They also have an informative website and will send you free samples. I don't know how hormonal surges affect dysautonomias, but I can tell you from my many years in my store that most women in their 40s are perimenopausal. For some twisted reason, at this age, many women start to have trouble with their cycles that are reminiscent of their teen years. Acne, serious pms, cramps, heavy cycles, irregular cycles, GI problems - you name it. Stinks. So unfair. Acne and cramps AND wrinkles - gimme a break! Before I went menopausal, I had bad cramps and heavy cycles. It really got my adrenalin going, so I can only imagine what it's doing to you. Ten years ago, most gyne docs didn't know the word "perimenopausal". Today, they're all over it. If yours isn't, move on, imo. If you've been trying flax, a lot of my customers found some hormonal balance by taking the flax SEED. Just be sure that it's ground or that you grind it in a coffee grinder. Start slow - 1 tsp to start. Remember that it's fiber. Ok, so this is what I've learned about men after almost 30 years of marriage. May apply to you, may not. 1.Guys like to be useful. 2.They like to fix things. 3.They love being appreciated (who doesn't?). Your hubby sounds fab - try not to feel badly for all that he is doing for you, just share the gratefulness that I know must be overflowing your heart. Just say thank you right now and I know you'll find little ways to show your appreciation when you're feeling better - and remember, it's those LITTLE things from your heart that will mean so much to him. Don't worry about the big stuff. I hope and pray that tomorrow morning will bring a little bit better day for you Press on! Dianne

Julie, Please let us know how George and you are doing today. Dianne

Dear Julie, My heart goes out to you. I just do not know how you all deal with this condition day by day, then on top of everything else, to have these attacks as well. I pray that your family is being a comfort and support to you. As a nurse, I'm going to offer some thoughts - try what makes sense for you - ignore the rest. I have extruded discs in my neck and sometimes radiating pain. Heat is very helpful to me (just be cautious because of the vasodilation). I use the Thermacare wraps that you can find in most drugstores - I think I get them cheapest at Target. If heat doesn't work for you, than there are some that can be chilled as well. I also get relief from Tiger Balm. This comes in an ointment form or in patches as well. Just be sure to get the "ultra" form as the other one stains (I don't know why they even make a staining one ??? For those who want stains on their clothes? duh!) I also have some of those flax filled pillows in various shapes that can be heated in the microwave or chilled in the freezer. Have you tried any aromatherapy or salts in your bath? IMO, Masada bath salts are fabulous. Epsom salts are the economy version. Lavender is soothing to the nervous system. Eucalyptus is soothing to the body. Avoid peppermint as it's stimulating! Rosemary might be also, but might not. Try just a drop or two of any of these as you're likely to be very sensitive and too much can be nauseating. Get pure oils - avoid artificial scents as they can be irritating. Aura cacia is a good brand that's not too expensive and easily found. Really good quality green tea (if you can handle the low level of caffeine) is rich in theanine, a substance that is calming to the nervous system. You might want to save this info until you're feeling a little better, but I noticed that you're trying flax oil to help with your blood lipids. Have you thought of fish oil instead? Most if not all of the research on this has been on fish oil, not flax. Unfortunately, people tend to generalize the results from fish oil to flax oil because they're both omega 3 oils, but they are quite dissimilar in many ways, and it may not be a valid generalization. Fish oils have 2 critical fatty acids, EPA and DHA, that are NOT found in flax oil. Eating walnuts has also been shown to reduce blood lipids. Ask your pharmacist if you can see his/her copy of the Natural Medicines Comprehensive Database. They have a whole tutorial (best viewed online imo) of natural products that are helpful for lipids and give a good explanation of the quality of the research evidence for each one. I have naturally high (family) cholesterol - I snack on nuts, eat lots of veg and fruit, only whole grains (oatmeal, whole wheat english muffins, brown rice), lots of fish (fresh + canned tuna and canned salmon) and poultry and a little beef or lamb. I used to eat a lot of fruit and my triglycerides were too high. Now I have just one piece a day and eat more veggies. And I use olive oil on everything. I also work with a preventive cardiologist to evaluate the particle size of my cholesterol - more important than the numbers themselves, and other important things like CRP. If you are Jewish or Christian, I find that reading the psalms, slowly and outloud, is very calming. If you're not, try this same technique with your favorite inspirational readings - slowly and outloud, just a short reading at a time. Repeat. Or have someone read slowly to you in a gentle voice. Please care gently for yourself at this difficult time. And be sure to let your family know how you are doing so that they can care gently for you as well. Don't put any demands on yourself right now. Be patient with yourself. This WILL pass. Very gentle hugs, Dianne

Miriam, I am so very sorry for you and for the rest of your sister's family - for your loss and for all the difficulties that seem to be there to complicate this very difficult time.. Please remember to take care of yourself through all of this. Fix your eyes and heart on the good and the sweet - wherever you can find it in these difficult times. Let the bad wash past you and let it just keep moving on. You will get through all this. Take care - in every way. With sympathy, Dianne

Hi Persephone, Loved your beautiful writing. I'm a book lover too - have scads all over the house, all in partial states of being read. Your post brought back beautiful memories of the library at Oxford. I used to travel to the UK (Scotland was my fav!) for business a lot. I was in the field of clinical research for kidney transplantation, and one of our physicians was a professor at Oxford. Enjoyed a very special day there as he had us up to his study for sherry, followed by lunch at the college, then a tour of the grounds, chapel, and library. He had the special key which allowed us to go upstairs in the library. What a treasure of precious books! Beyond words! I can't remember that professor's name - he was already emeritus at that time (10 years ago?), but another Oxford professor who contributed greatly to our research was Peter J. Morris, MD, PHD - an unbelievably fabulous man - brilliant, engaging, down to earth, and renowned in the field of renal transplantation. Wrote "the book" actually, called "Transplantation". My son is about 2/3 through his degree in engineering. I don't think it was ever easy, but about this time last year, he just hit a wall. He's been out of school ever since, but his dream is to finish his degree. We want to encourage his dreams, but also want to encourage reality with this awful condition. I guess we can just take one day at a time. He goes to Mayo in January and we're hopeful for a bit of help. I encourage you to press on at Oxford. Your efforts are an inspiration. Anyway, you've got some amazing surroundings at Oxford, people and otherwise. Thanks for the opportunity to reminisce.

Pamela, I echo wareagle, except that I think you should have a complete discussion of your symptoms with your primary care doc (PCP), not keep repeating visits to the ER. As a former ER nurse, I want to stress that the function of the ER is to address "emergent" problems, like to rule out a blood clot. Almost all ERs will tell you to follow up with your PCP in their discharge instructions. It is the job of your PCP to do a complete medical workup to find the cause of your symptoms. I'm concerned that you're never going to understand this issue if all you do is keep going to the ER, unless of course, it progresses to such a serious state that you are "emergent" when you visit the ER. And we all know that's NOT where you want to go.

Hi Shannon, Can you share any specifics on your experience with Dr. Low? What kind of tests? How long there? How did you coordinate his suggestions for meds with your local docs? What was the best part about seeing Dr Low? Any suggestions for us? We're going Jan 16th. Thanks, dianne (mom of mike, age 23, with POTS)