ACsMom

hummmm. That is something that I did NOT know. She came off of licorice root and butchers broom when she had hip surgery in November. She didn't take any of those for about a month. Now that age old quandry. Do I have her POTs dr. do blood work in 4 weeks when she sees him next or do I pull her off of or reduce the licorce on our own???? errrrrr! she does have fatigue, had exercise intolerance and was having cramping in her feet recently. I may suggest that she reduce her licorce. Thanks for sharing this! She fell asleep Friday night quickly with the melatonin. She did the same Saturday night with it but also took the new generic of effexor. She rarely wakes up on her own before 10am. She was up, dressed, hair brushed, bed made and smiling downstairs by 7:40am this morning. Generic change?? I've cautioned her to pace herself as she really is recovering from a POTs flare.

Thanks for the ideas. Effexor helped with pain which made sleep better. The doom feelings disappeared, too. The pharmacist just ordered a different generic manufacturer that has a very good record so we'll see what happens with that. Her POTS dr. did suggest that she try the melatonin. I think she fell asleep much faster last night and seems to have functioned fairly well today. It sounds like something she can use one night and not the next. 13 is just too young to have insomnia. Thinking of you! Anne

My daughter tried saline via IV with a home health nurse for POTS/NMH. She responded very well to it. Because she has EDS, long term IV access on her arms would not have worked. She has a port placed near the bottom of her sternum. She orders her supplies every 2 weeks, can tweak the volume based on the season (needs more in the warmer months), or time of month. We use the HSA funds to pay the deductibles. Last year, she met her out of pocket maximum between PT and the infusion supplies early in the year. Right now, the deductibles are running about $100 to $120/5 infusions until the deductible is met. She is very, very careful to follow sterilized field protocols and has never had an infection in 14 months. She DID manage to pump an entire iv line of air into herself when she forgot that ONE time to bleed the line of air. That resolved itself by the time she got to the second ER but that was a very long day and night. Here is something that might give you some ideas on talking to your doctor. http://potsgrrl.blogspot.com/2011/08/how-to-talk-to-your-doctor-about-iv.html Anne

My 19 yo daughter, Alana, is struggling with bouts of fatigue, poor sleep, exercise intolerance, stomach pain on standing, poor concentration, etc. even though she is doing her saline infusions along with midodrine, florinef, licorice root, butchers broom, omeprezole, effexor, salt, etc, etc. etc. Her hr and bp numbers aren't "bad" but she is symptomatic. So, it's not as bad as POTS/NMH before saline but the past month or so has been different since she started the saline 14 months ago. So. Our ideas we're trying to sort out. One is that her low dose effexor was changed to a different generic manufacturer in Feb. Our wonderful pharmacist is getting in another manufacturer's generic effexor today for her to try. Another idea is that she was on tamiflu for a week and then had a very mild "flu" for 2 days... fatigue, headache and drippy nose. Then a head cold 2 weeks later. The other idea is that she has hit the gym a bit too hard, running/walking on the treadmill for up to 30 minutes. Her dr. has suggested melatonin for sleep and her pharmacist gave her some sleep hygiene tips. But her dr. tossed out the idea of ritalin, low dose, for her to think about. DOn't like that idea at all. So I'm trying to figure out if this is a new normal or if something(s) triggered a flare and it will die down with time. Any opinions on what may have triggered this setback? Anything sound familiar to you? When things are going better, it is so easy to fall into an assumption of normalcy. That things are better than they really are. Reality check. Anne

The pcp mentioned that the Q-T interval/rate is adjusted for the heart rate. So, I think that the ECG can record a long QT interval but when it is adjusted for the hr, it is no longer long QT. Good grief. Sometimes, I just get overwhelmed with all of the variations, etc. Life experience sure is a tough way to learn our way to a medical degree

Thank you, both. DD just had another rhythm strip done yesterday and the QT was perfect.

Does anyone know how common long Q-T Syndrome is with dysautonomia? I read yesterday that the Q-T interval lengthens during bradycardia. Don't know if an EKG a couple of years ago showed a borderline long Q-T interval because she was in an episode of bradycardia. Just poking around to see if this is common with dysautonomia.

DD's infusions are done slowly, usually about 3 1/2 hours to 4 hours for 1500ml. A fast IV such as they give in the ER..... don't know if that would help as much.

DD tried this last fall via IV on her arm/hand which a home health nurse set up. It really helped so she now has a port and accesses it herself 3x/wk. It has helped a lot. Better endurance and energy so she can now do her exercises and has even joined a small local gym to use the treadmill and some other machines but all within limits for her joints. She has had a couple of episodes after starting the gym where she was very tired later that day. EDS or POTS, I don't know but she is working on adjusting her routine and intensity so that fatigue doesn't hit her. It has helped with concentration and focus so that has helped with schoolwork. She doesn't get POTSy driving. She's up and active, probably went from 50% function to about 80%+ function. The one question is how will she handle the heat that will be coming shortly? Don't know but so far, it's been a life changer. She sees a nephrologist.

My dd has EDS and her doctor's theory is that with faulty collagen, her vessels, etc. may be leaky and have a difficult time holding on to water. The theory behind the saline infusions is that more fluid can get into the tissue "compartments". So, she can drink lots of fluid and still be dehydrated because the fluid is not filling the tissue and cells. The GU Brew is just one way to get in sodium and fluid. She may go thru 2 to 3 tablets/day. I don't KNOW that they help that much but they do provide the sodium, potassium, etc. I think all sugars, carbs are turned into glucose during digestion. But simple carbs will convert to glucose more quickly than more complex carbs. That difference may factor into how well the sodium and glucose work together.

DD had been and off a gluten free diet for several years. She finally took it seriously this summer and then was asked to go OFF of it for 2 weeks prior to an endoscopy. She felt horrible. Tired, nauseous, brain fog to the extreme. As soon as the procedure was done, she went gluten free and felt better. Not cured but better. I think it was an eye opener for her. She is faithful following it.

Well, I've been poking around this morning and find that there is a sodium-glucose cotransport mechanism in the intestine. Then this little snippet from the link below. It's not just table sugar but glucose.... honey, etc. While there are sugars in fruit, I don't know how much fruit you'd have to eat to equal the beneficial amount of needed carb/glucose. The quote below gives a 3g water to 1g carb ratio. "Glucose is an easy carbohydrate for your body to digest and absorb quickly. Carbohydrates can help to rehydrate your tissues by storing about 3 g of water for each 1 g of carbohydrate. As part of a rehydration beverage, glucose encourages your cells to store fluid and provides the fuel necessary for quick energy." Read more: http://www.livestrong.com/article/498562-why-are-salt-glucose-needed-for-rehydration/#ixzz2JNKj2eUD

My dd is using Gu Brew Electrolyte tablets. No dyes. The sweetener is stevia. REI carries them at a very good discount for a multiple order (I usually order 12 at a time and I've paid anywhere from $4.60 to $5.50ish/ instead of $6.50). They do have 40mg less sodium than NUNN but I don't think that is going to make a difference. When the home health nurse was here helping her do her saline infusions, she mentioned that the body needs sugars to help "drive in" the sodium, etc. into the cells. So. While I'm glad that dd isn't chugging dye filled gatorade, powerade, etc. with its artifical sweetener or loads of sugar, we've decided to start adding a teaspoon or 2+ of table sugar to the GU Brew. She has also added a similar flavor packet of EmergenC to the GU. (1 tablet Strawberry Lemonade GB with 1 packet Pink Lemonade EmergenC.) The combination seems to make a good blend. They both fizz. She just waits until it has died down before she drinks it.

Rachel, my understanding is that my home health/pharmacy provider is a subsidiary of Divata which is a large company. I wonder if by contacting them, you'd be able to find one of their subsidiarys or if they could take a prescription from your doctor and ship to you. The supplier/agency/pharmacy is available 24/7. http://www.davita.co...asked-questions That is a wonderful hymn you've quoted! Our soul anchor. Addition. Here is another good page from their website. http://davitarx.com/

My dd tried the saline IV therapy, it worked and she now has a port. The home health nurse taught her how to access it and she's independent with it. The home health agency is 1 1/2 hours away. They started by sending someone out to deliver to us. Recently, they have been FedEx'ing things to us, even saline. The doctor ordering the IV's is the one who connected the agency with us. The agency does not have home health nurses but they contracted an agency that does. That agency came out here (1 hour away) for the peripheral IV's. With the port, there is only the need for supplies and those can be shipped to our door.

Thank you Kim and Naomi. What she is taking changed so much after her last dr. visit 6 weeks ago. I read that licorice in large quantities can cause "visual acuity" problems with spasms with the blood vessels in the eye....... Mom took it from ;o). Waiting to hear back from her doctor. I don't know what her HR and BP are. She doesn't tell me when it is happening. I think her attitude is that it's just part of her life and she tries to work around it. Usually, BP does not spike and I haven't seen it go below 100 systolic in quite a while. At 17, I think she needs to move toward being more proactive in checking this type of thing when it happens. Maybe a log that she can check rate and bp with the dominate symptom. Thanks again.

Now she tells me. My daughter has just described episodes of difficulty reading. They usually happen when she is very fatigued (on her home PT days) or just not feeling well. The words and pages will get very dark and she has a hard time focusing. The words can move around. I'm assuming POTS,NMH. But is there anything she can do? Is this a lack of O2? Is this pre-fainting?? Some deep breathing in order?? She started licorice, butchers broom a month ago, added onto what she's been taking.... midodrine and salt and fluids. I haven't yet started her on the .1mg of florinef. Ideas? Thoughts?

Last week, the temperatures dropped into the lower 80's. DD has revived. She was able to do her 16 PT exercises in under 2 hours. It had been taking her all day to do them. 2 exercises. Crash. Rest. Recover. 2 exercises. Crash. Rest..... All day. Her PTherapist wants her to exercise every other day with what I call the "Pokealong" model. The benefit of this is that her joint pain from EDS has dramatically decreased. But the POTS..... She also started licorice and butchers broom 3 weeks ago so her improvement might be due to those additions. BUT. Are you reviving with the cooler temperatures? Interesting to hear what you say.

Hi Edin. I think you're doing a very good thing in thinking about you life and what to do. It looks like you've already received some very good advice. My daughter is 17 and was diagnosed last summer. She would NOT be able to do school or even her art if she wasn't on some medication. Midodrine helped her have fewer episodes of POTS and hypotension. But school had become very, very hard for her. Effexor has brought her focus and concentration back. She had done very little art over that last year or so and she can't stop now! She can still crash (Monday was a hard day) but she's like you.... trying to figure out what to do on the up days and down days and what her future holds. I encourage her not to look too far down the road but to focus on today and to work on some short term goals. A little bit at a time. If you're interested, she has a blog. Its focus is on Ehlers-Danlos and POTS. (www.somethingholdingmetogether.blogspot.com) Thinking of you as you tackle this.

Rissy2D, you mentioned that..... "For patients who are hypovolemic the pulse ox is pretty much useless because typically your blood is as saturated as possible (so you will have high readings). The high readings in hypovolemic patients do not accurately measure the actual oxygenation of your body tissues." Would you expound on that please? My daughter has EDS and POTS/NMH. I like the meter for the rate info. But, with some of her wild fluctuations at times, it gags and has to reset in order to keep up. I don't know if there is a different one that can more accurately follow her (that doesn't cost $$$$) but I think it's good enough to give us a decent sense of what's going on. Thanks

My daughter's cardiologist put her on this at 50mg with her evening meal. She believes that it helped her sleep a bit better and she would wake up more refreshed. Her anxiety issue was a little improved. It was subtle. Nothing dramatic at that small dose but she did know if she missed a dose the evening before. The dr. has since added Effexor, brand only, but he commented that lots of 5-HTP would do the same thing. I don't remember if there as an adjustment period for the 5-HTP but it took a good week to start to feel benefits from the Effexor.

Thanks Brye. Your reply has helped. I'm still new to this, trying to figure it out, what's the new normal, what's abnormal for the new normal. What to ignore and what to pay attention to. DD has recovered, thank you.

We use GU Brew. Like NUNN in tablet form. VERY handy to have. The tablets are "soft" enough to break in half to get into a water bottle. I think you can find NUNN and GU Brew in some bike shops. ****'s Sporting Goods has the GU Brew and maybe NUNN.

Brye, If her heart rate was bouncing in the 100's...... 120 to 185 while lying down with fever, etc., is that not something the doctor would use to evaluate her? Illness does cause POTS, etc. to kick up a notch. I'd think it would be a reasonable bit of data to get a more complete picture on how she's doing. I understand that for most patients, this information isn't needed. Are you saying that its not something the nurse should be asked to do but I should ask the doctor to check it? Thanks for the feedback.

Thanks! I'll ask for this to be part of her "check in" when we need to see him next. And this practice does get a lot of their CNA's (some in training) from the local high school. I don't think she was an RN.