Lukkychrm42

I know!!! Just because some people have too high blood pressure the headlines declare that salt is the next evil thing, and so everyone feels justified in judging how much you put on your food. On top of that, so many brands brag about how their latest version is now lower in salt, hurrah! And just when I thought I might be getting enough!!!

The Jewish-European side of it (aka Ashkenazi Jewish) tends more toward familial dysautonomia, whereas some docs lean toward northern European descent as related to non-familial dysautonomia. I thought that PAF was generally diagnosed in the elderly population, and characterized by the body being unable to maintain BP on standing, though I don't really know the difference between that and NCS, except that NCS is more common in young people. The autonomic problems caused by damage to the ANS would more likely be due to a virus or injury (esp. head injury). Many people have post-viral POTS, but many of us have POTS for other reasons. Dysautonomia is the general term for dysregulation of the autonomic nervous system, and while many people here have what is referred to (according to Grubb's papers as I recall) as partial dysautonomia, it's not termed failure except in PAF. Multiple System Atrophy is very rare and involves many organ systems. There are explanations of these on the main website and at ndrf. org.

I saw an endocrinologist while in the hospital in June, and even though I wasn't in for my POTS, he made me do orthostatics and then he'd argue that my BP wasn't dropping on standing, which I know, and because of this he didn't seem to understand why I'm on ProAmatine. I tried to explain what my pattern was (BP goes UP until standing for a while (like 20-30 minutes) when it plummets, and that my bp might be extremely low at other times, like when sitting or lying down. I wasn't looking for answers from him with regards to my POTS, but he was definitely convinced that as a doctor, he automatically knew everything about health and i was just a stupid patient. Well, that's what it seemed like anyway. As you see, there are those whose BP goes down, those whose goes up, and those whose stays the same. A "normal" person's usually goes up a tad, but as for me, I just say it fluctuates. Hopefully you can rely on your cardiologist to treat you instead of delegating anything POTSwise to your other doctor. But Maybe the next time you do see your local doc, you can bring some literature that explains about POTS- that way he'll know for next time. Good luck with everything, and welcome to the confusing world that is dysautonomia!

I would say so, too. I don't get super-upset that often, but when I do, I tend to go into major adrenaline rush.

Hi Melissa, I just want you to know I'm sending lots of love and hugs your way. I'm sorry you're in hospital, and I hope you're back in your fishbowl soon!!!

It seems to generally depend on you and your doctor. Most states that I know of have similar laws regarding seizures. There are some of us here unable to drive while others of us have no problems driving. I thought I might lose my license after my seizure episodes in June, but because it was caused by a medicine I'm no longer on, my doctor trusted my judgment in saying that I could drive. There are POTSies who have convulsive syncope which looks similar to seizure, but if there's something else causing the seizure, I imagine that it needs to be figured out before deciding that it's OK to drive. If you faint when you're sitting down, maybe that could mean you're at a much higher risk for doing so while driving. If you've never had problems with driving and your symptoms don't interfere, then maybe you should talk to your doctor, especially if they're basically telling you that since you have POTS and faint, you can't drive period. Maybe some of our other PA residents or those with similar issues can help with this one.

Hi Becca, I, personally, think that PT is great. I'm feeling super guilty that I haven't kept up my exercises this summer, but they're easy to forget! Some days I went in and could do almost nothing, and those were the days for a massage, TENS, or compresses. If that's not an option, doing what you can while laying down might be all you can do. Obviously you don't want to pass out, but if you can push yourself a little without actually passing out, I think that the effort in exercise might be good in the long run. Exercise intolerance is pretty common with POTS, so I don't really see why your cardio was so surprised by this. Just out of curiosity, have you tried swimming? A lot of us, myself included, feel relatively great in the water (you know- practically gravity-free!), and if there are exercises you can do in the water that might be a good bet. I know it's frustrating, but I hope it works out for you!!

Or another one on gatorade- sorry if someone's already said this: Whenever you travel to a foreign country you bring powdered gatorade just in case you can't buy it, and pray that customs doesn't think it's anything besides gatorade!

I didn't say that needle aspiration wasn't painful. Please read what I wrote in full before making such harsh comments. Thank you.

Hi there, I would have to answer yes to all of your questions, including being shy. There's a book on MVP/dysautonomia syndrome that really addresses the panic/anxiety attack issue, it seems they are sometimes common in POTSies. But I also find it very dismissive to say that such symptoms as palpitations and dizziness come from anxiety and reinforces the uneducated view held by some ignorant doctors that the symptoms are psychological. I have never had such attacks, so I wouldn't worry about them too much. If you haven't had them by now with dysaut, I wouldn't think it was likely to start later on. No point in worrying about worrying!

I had braces for 3 years as a teenager, and I don't think there's any reason to fear that a POTS patient would experience more pain with them than normal. Braces can be pretty uncomfortable for anyone, but it's usually manageable. If you have EDS, there may be different issues involved, or if you have experience with different reactions to pain or nerve issues as such. I don't think the pain is at a high enough level to cause or worsen POTS symptoms as other severe pain might. I also have a small tattoo on my lower back. I got it 4 years ago (wow, that long ago?!) and have had no problems. I have some piercings, too, and haven't had any problems with these either. The pain associated with either of these was so minor...nothing compared to a needle aspiration or even getting blood drawn. For me the color didn't hurt at all.. the black ink hurt a tiny bit, but mostly because I was surprised when I felt it...seriously, I'm talking plucking a hair. As long as you go to a reputable place, they will be sanitary using disposable tools and gloves and sanitized everything...I mean I would feel less at risk of anything there than at a hair or nail salon. Believe me, the braces were the worse of the two!! And because I was a stupid teenager and didn't wear the retainer because I was living abroad and not seeing an orthodontist and not caring, now my teeth are more crooked than they were to begin with!

Greetings! So I have the American MedicAlert service and bracelet over here, but it's time to renew my subscription, and while there's a number to call from overseas, it's not on the bracelet. What similar organizations are over there, and could you please post a link? Thanks a bunch!!

I started taking it about 2 weeks ago per doctor's orders. I take 10 drops three times per day. I have also been on Florinef and didn't do well on it, but I think it will take a while longer before I start noticing any effects. I haven't been able to monitor my BP closely lately, but I'd guess it's still low considering how lethargic I have been. I think the brand name is Creative Naturals or something like that, and it was $18 for a 20 day supply. It has some sugar in the base liquid, and I haven't seen any other specific instructions on taking it.

I'm glad you made it in, and I hope you're feeling better soon. Love and hugs, Megan

These haven't yet been approved as there's quite a large amount of funding required, but my drafted accommodations for my Masters program are really extensive...much more than I ever had available to me here in the States... including not only special software to allow me to communicate wirelessly with tutors, shower chair, recording device, ground floor flat, and all my usual exam accommodations (food and drink, breaks, extra time, etc.), but also someone to do shopping and laundry twice a week, and so on. One of my tutors in Lancaster, England once told me that disability legislation in the UK was there but had no teeth. Well, I don't know if this is Manchester or the whole UK, but it's looking pretty darn good to me!

Yeah, umm... the proamatine can make them painful at times!

Well, I believe that it depends on the person to a certain extent. For a super-healthy athlete, a HR like that can be indication of heart health. But my cardiologists tend to say that they'd like to see a HR closer to 60 for me. When I'm lying down, it is often in the 40s, and I often set off the alarms for it being too low. Same with BP. But I think the numbers are more of a problem when you're feeling out of sorts. Having low HR and BP like that could explain why you're more lethargic and/or dizzy, and so your doc might want to try to correct that. I just saw my doc, and he said that we need to get my BP up, so while I'm still on ProAmatine, I'm changing back to a very low dose BB for my HR, and adding licorice and another product called adrenal complex to help support my system since I didn't react very well to Florinef and certainly will NOT be trying DDAVP again! After nights where your numbers are so low and you don't sleep well, do you still have days where you're feeling decent and are able to get around well? Could it maybe relate to medicines you're taking during the day but not at night? Hope you're feeling better soon!

Thanks for the update, Melissa. I'm glad your surgery went well, Nina, and I hope you continue to recover and feel better! Lots of love, Megan

I don't remember exactly, but I think that garlic maybe helps to lower BP? So it can be considered good for some people, but not if yours is too low or drops. I love it and have never tried to avoid it, because it just doesn't seem like it would make such a huge difference, but if anyone out there actually does and notices a difference, I'd be interested in hearing about it.

I don't know, since my issues are diarrhea-related, I was cleared out within one hour, but the instructions clearly said to drink all of it. I know it's not fun, but better safe than sorry, and them telling you they couldn't do it after all and you'll have to do it all over again. Sorry!!! I think I was on a liquid diet for the day before, too, before starting the "stuff".

I know a couple of patients with POTS and/or NCS who have convulsive syncope...have your son's episodes improved since starting treatment for the arrythmia, whether or not the syncope was dysautonomia-related? When I have witnessed it, it started with a faint that turned into seizure-like activity, but like a seizure, the patient was not conscious. But this is still very different from the tremor/shakiness some of us seem to experience outside of syncope. I almost never faint, but I have had many a shaking episode like that. At Vanderbilt, they told me it was from the massive norepinephrine rush, and takes a lot of time to finish, even after lying down. I vomited repeatedly over the 26 or so hours, or at least retched when nothing was left, though if I wet myself no one told me...I dunno, because I had a foley in for about 4 days. My tongue is still sore from biting it, although it is not nearly black and blue like it was when I woke up on Thursday and begged for something cold to drink. Hope you're feeling better!

I would avoid meat and dairy products and caffeine, and stick with things like toast, bananas, apples, rice, carrots, broth, sprouts (try sprouted lentils, chickpeas, peas, and soybeans- yum! ), and kombucha tea. Some people find cruciferous veggies (cabbage, broccoli, etc. ) difficult to digest, but if you love them it might help to gently steam them. Stick to more whole foods in general, and try to limit the overly processed things. If I'm trying to detox, I might eat brown rice with steamed veggies and tofu with some herbs and salt, accompanied by detox tea and kombucha. However, pretty much anything high in fiber will help to clean you out beforehand. But I imagine this won't substitute for whatever laxative drink you will probably be required to take regardless. Unfortunately. And those are effective, I mean, think about it: they're given regularly to people over 50, who often tend to have poorer eating habits (due to decrease in tasting ability, eating alone, $$, etc, ), and you have got to be clear for it, so I'm sure they are effective. No offense to anyone older, really! I just mean that doctors probably make you drink these things beforehand because they're effective.

So- speaking as someone who has now had a grand mal seizure, I remember nothing! I apparently collapsed to the floor, began convulsing, and went into a 24-hour coma. There are different types of seizures, though, and there may be less-severe ones as well. When I am conscious and begin shaking uncontrollably, I can usually tell that it's POTS symptoms, and it usually occurs for me after a major emotional charged episode.

Hi there. I've never done saline regularly. My understanding is that continual IV saline is pretty controversial as a treatment not because of those doctors who think that you should be able to get the same benefit from drinking water and eating salt, but because the risk of infection with the invasive PICC, port, or central line. I do know of some POTS patients for whom daily saline therapy is indispensible. While I know that I, too, retain IV saline better than drinking, I haven't felt desperate enough yet to seriously consider this option, which I'm sure is a good thing. On the other hand, if you discuss it with a doctor to have IV saline available to you on an as-needed basis, so that you can go to the ER, doctor's office, or patientfirst-type place every week or every few days for a few hours, this might be an option to, IF you have the time (though, hey, if you can work via the internet and have wireless access with a laptop, or just a computer available there to you, it might be great!). Let us know what you decide and how it works for you!

I take 10 mg loratadine every day morning and evening, and then zicam allergy spray, and benadryl as needed. Plus decongestant nasal spray when absolutely necessary. I was on prescription shots and pills until age 18, and seem to be doing better, but still get seasonal issues. I don't know why your meds don't seem to be working in combination, but if your gp doesn't seem concerned about this, than can you try to go to someone else?