POTSparent

luckygoat3: Have you ever noticed in the DINET home page "what to avoid" section that it lists Calcium Channel Blockers? I wish it would explain more in detail beside each one as to "why" to avoid them. For instance, a lot of people are taking beta blockers. My daughter used to, but when we went to a new doctor in Ohio, that doctor didn't like beta blockers for the treatment of POTS and had her totally get off. In that case, I believe the beta blocker was seen as a contributor to excessive fatigue.

Are you taking florinef? My daughter's migraines reduced significantly once the florinef was eliminated. The thinking was that florinef acts to constrict the blood vessels -- particularly right behind the eyes and in the forehead -- which is exactly the action that can cause the onset of a migraine. Just eats salty snacks now to help with retaining the high fluid intake that is required by POTS patients.

One web site on pectus excavatum (PE), or simply sunken breastbone, said: "As it progresses, PE can result in dramatically decreased exertion tolerance. Some notice that their stamina just isn't quite what it used to be. For others, even walking down the street becomes impossible without a rest stop. Any exertion may bring on chest discomfort and heart pounding, palpitations, cold sweats, shortness of breath, dizziness and great fatigue." Symptoms sound familiar? Makes one wonder, which came first, the chicken or the egg? Or in this case, the POTS or the PE?

Like Danelle, we put salt in the Gatorade. Whenever we're at a fast food place, we grab some of those restaurant packets of salt. If you dump one of those in your Gatorade, you don't even taste it, yet it helps with the salt intake while you're drinking your fluids.

MomtoGiuliana: Actually, we didn't so much suspect a bleeding disorder with our daughter. We did know that she had low blood volume as part of POTS. Our doctor in Toledo,OH, however, asked some very specific questions about the nature and extent of our daughter's bleeding during menstrual periods, since certainly heavy bleeding would add to the low blood volume problem. She was asking the questions because she considered bleeding disorders to be found at an unusually high rate amongst POTS patients. Ultimately, she tested for two bleeding disorders of a slow-to-clot nature: One was von Willebrand's disease and the other was Delta Granule Storage Pool Deficiency of Platelets. At least with the latter, nicknamed SPUDS for some reason, I'm told that they didn't have a test to verify the suspicions that this condition existed until about a year ago. And, as of a few months ago, Toledo was the only place set up to perform the tests. Anyway, the condition (the Delta Granule etc) doesn't impact our daughter's day-to-day affairs, but it was suggested that she get the medic tags in case of an accident.

Beala: My daughter is on 100mg Zoloft. She's been on it for about 2.5 years. As I recall, we did ramp up through a series of 25mg, 50mg, 75mg, before hitting and staying at the 100mg target. For what it's worth, we've changed doctors several months ago. The new doctor wants to switch (in due course) from Zoloft to another SSRI, but it hasn't been a high priority. We had some beta blockers to come off of, and another medicine to add, that took priority. We have another appt next month, and I expect to hear further discussion about the switch away from Zoloft. All SSRI's allegedly act just a little bit differently from one another, and she wants to use one with a slightly different effect. Still, Zoloft has been generally a beneficial part of the program.

Once upon a time, I had a doctor mention that a higher percentage of the general population that had at least a mildly sunken breastbone (Pectus excavatum) were dysautonomic. That is, he considered my daughter's mildly sunken breastbone as an indicator (mitral valve prolapse, chest pains, exercise intolerance, dizziness). Thus, this poll. How many here have this physical characteristic?

I've got a 17-yr old (daughter), too, and the SSRI has been considered beneficial. So maybe it just needs a little more time. Or maybe it's one of those cases where "results may vary". However, since you're starting 2 different medications at roughly the same time, how do you know which one is causing what? I've often heard that any multiple medicine treatment ought to be staggered about 2-wks so that if an unwelcome side effect develops, you have a better idea which medicine is the culprit.

This question (IV Hydration) is along the lines of something I've been wondering about. I suppose since low blood volume is one of the problems, then IV Hydration is intended to build up that blood fluid volume. I wonder how long the benefits would last before the body "adjusts" that volume back to its former too low state? Further, as a parent who would gladly donate a pint ... how long would a blood transfusion itself actually be maintained by a POTS patient as an increase to their blood supply? Anyone ever pose such questions to their doctor (specifically, how long would the benefits last)?

I'm wondering if Dr. Grubb was referring to research, as noted by my daughter's POTS specialist, that suggests that dysautonomic patients are more likely (higher percentage than norm) to have DIFFICULTY in getting their blood to clot? That's the case with my daughter that has to wear a Medic Alert tag for bleeding should she be in a traumatic accident.

Briarrose: Since you go to a hematology clinic, has your blood ever been checked for its clotting capability? Just wondering. Our daughter's doctor tells us that an abnormally high number of POTS patients also have a bleeding disorder that causes the blood to be slower to clot than normal (and easy to bruise, horrific menstrual periods, etc). Was curious if some other doctor has ever mentioned something similar (or in your case, confirmed by your hematologist).

I haven't heard the "do not fly" from the specialists. What I have heard are a couple of things such as "stay hydrated - plenty of fluids" and info such as airplane cabins are pressured to the equivalent of 6500-ft. That's a little bit higher than Denver, CO, or around the height of the tallest peaks in the Appalachian chain such as Mt. Mitchell. If mountains don't particularly bother you, I don't see why airplane travel would. While this might address some of the physical aspects, if you're prone to being anxious, then perhaps someone else can give a tip in that regard. Happy travels!

Message to Ethansmom: Regarding moving to Florida and finding a doctor that understands POTS. There is a dysautonomic condition known as MVPS that has a center in Florida. I know nothing about its reputation, so this is by no means an endorsement, but it might be a starting point that would be more versed in POTS than just your regular GP. It is Mitral Valve Prolapse Center of Florida, Florida Institute for Cardiovascular Care, 3702 Washington Street, Suite 325, Hollywood, FL 33021 Telephone: (954)967-6550, Toll Free: 1-877-96-HEART. This info plucked from the mvpsupport.com web-site.

As reported by my daughter, no letdown or "need" for the Adderall. Similar to Lorrell's reply, it simply has helped her obtain a better quality of life. She can nap, if desired, as the only problem sleeping was pretty much the very first evening or two on the medicine. About the only "stimulant" type effect was that it did result in her dropping about 10-lbs due to a reduced appetite, but that leveled off and she didn't lose any further weight. Also, even though she didn't recognize previously any problems in her ability to "focus", she felt that her ability to focus on the tasks at hand had indeed increased somewhat. To anyone who feels that CFS or excessive fatigue is one of the most troubling aspects of their dysautonomia, then I'd recommend that they at least talk to their doctor about Adderall. But remember, while one should be careful with all medicines, this is a controlled substance so it should be handled with even more care.

Lorrell: No problem. Probably should have mentioned it the first go-round. She takes 30mg of the extended release in the morning.

The "late afternoon" Adderall dosage is 10mg -- one pill. If she's planning on crashing early for one reason or another (e.g., early morning plans), then she might skip it that day. But as long as she's not going to bed until 10pm or so anyway, this dosage helps extend her day (without the overwhelming fatigue factor). Glad to hear the XL has been working for you. I don't think many people have this within their dysautonomia medicine strategy, but it has certainly been a good call by the doctor for our daughter.

First of all, I applaud your concern and interest. You are a friend indeed. You repeated a couple of times the point where suggesting that your friend drink fluids is causing friction. I'm a caregiver of a 17-yr old POTS daughter, and sometimes "good morning" can be a friction point. Understand that a "normal" person should be drinking 64oz fluids daily, and a POTS patient needs a lot more than that! You might like chocolate. But if you had just finished off the entire Whitman's Sampler box in one sitting, and someone suggested that you need to eat more chocolate, it might be a source of irritation. My daughter and I have an agreement. I quit verbally mentioning the fluids issue. However, if I noticed she wasn't drinking, she was obliged to quietly accept my "gift" of a drink without protest if I handed it to her. We also try to keep a good variety of fluids available so that one might always be sufficiently inviting (or at least tolerable) to consume. Maybe you should quit talking about the fluids and simply hand her a drink and continue on with whatever the two of you were talking about. Hang in there!

Yes, my daughter has used Adderall XL for the last 6-mos and it has made a marked improvement in her treatment. The beta blocker strategy (Toprol XL, Nadolol, etc) wasn't working, and in fact, probably had made things worse by increasing the fatigue factor. My understanding is that Adderall acts to constrict the blood vessels to force the blood flow away from the extremities where it tends to pool and get it back to the central organs area. The pooling of the blood in the extremities (which is why you see so much talk about compression hose) is exactly what prompts the dizziness, lightheadedness, chest pains, etc. Much to my surprise, though Adderall is essentially legalized speed, it got rid of some of the worst symptoms while not causing palpitations or pulse rate to become the new problem. Adderall is the same stuff given to Attention Deficit Disorder (ADD) patients, but you're probably getting a lower dose. By the way, if the long-acting XL isn't quite getting you fully through your day, the short-acting Adderall (no XL) has a "life span" of just 4-hrs. My daughter takes the XL around 6am, and then a small dose of regular Adderall around 4pm. No impact on sleeping schedule (except maybe the very first day she took it). Again, we've been real happy with the "reverse course" of getting rid of the beta blockers totally in favor of the Adderall XL approach. We're crossing our fingers that we're equally happy in the months ahead. Good luck to you!

I believe the connection between MVP and dysautonomia is that, much of the time, MVP is simply a symptom of dysautonomia much like an episode of lightheadedness would be. If one's blood volume is low, then there's not another blood in one heart chamber to fully hold closed the mitral valves to the next chamber. That lack of pressure due to the low volume allows the mitral valves to slightly "flop" or prolapse backwards. Well, it stands to reason that if you have an echo on a day when your blood volume is a little bit better, then no MVP will show up. Certainly there are many cases where the MVP is due to a legitimate heart condition, but it is alleged that "most" cases of MVP are really simply a symptom of dysautonomia. And low blood volume is a widespread problem within the dysautonomia "family" (thus all the talk about drinking plenty of fluids).

I believe the connection between MVP and dysautonomia is that, much of the time, MVP is simply a symptom of dysautonomia much like an episode of lightheadedness would be. If one's blood volume is low, then there's not another blood in one heart chamber to fully hold closed the mitral valves to the next chamber. That lack of pressure due to the low volume allows the mitral valves to slightly "flop" or prolapse backwards. Well, it stands to reason that if you have an echo on a day when your blood volume is a little bit better, then no MVP will show up. Certainly there are many cases where the MVP is due to a legitimate heart condition, but it is alleged that "most" cases of MVP are really simply a symptom of dysautonomia. And low blood volume is a widespread problem within the dysautonomia "family" (thus all the talk about drinking plenty of fluids).

Here's a thought on the migraines. Do any of your medications tend to constrict the blood vessels? For instance, many people here probably take Florinef to supplement their heavy fluids intake. The Florinef works fine for most -- and it's such an "innocent" little medication. However, for those prone to migraines in the first place, the action of the florinef allegedly (per my daughter's pediatrician) constricting those small blood vessels right behind the eyes is exactly what one doesn't need! My daughter stopped the florinef and the migraines frequency reduced substantially. Another doctor debated that point, but the migraines markedly decreasing was all the evidence we needed.

This is sort of opening an old subject here, but I'm a newbie to this forum. About 6-mos ago, my 17-yr old POTS daughter lost every single hair on hair on her within a 72-hr period with most damage complete within 48-hrs. With POTS, we'd come to expect odd symptoms, but in no way were we prepared for this one. She lost the hair on her head, her eyebrows, arm hair .... about the only area spared were her eyelashes and they thinned. Not a welcome turn of events for one's senior year in high school. All the tests one would expect were run including thyroid, lupus, drug & toxin screening, etc, and they came up negative. A scalp biopsy was done as well. When it was all said and done, the medical "best guess" was that our daughter had a severe reaction to the beta blocker Nadolol which she had just started about 3-mos earlier on a switch from Toprol XL. The explanation was that the reaction had reset "the clock" on all the hair follicles so that they fell out near simultaneously instead of on a staggered hair cycle schedule. But it wasn't a conclusive opinion. But we stopped the Nadolol and indeed her hair started growing back (still too slowly for her). So what's "the story" on beta blockers and hair loss that was mentioned in the prior post? She was also taking Zoloft at the time, but that was discounted as the culprit. I'm indeed curious. Don't want to repeat the past on this one.