iheartcats

All this makes me wonder if there is other treatments for some of us...thanks for posting your info! I do have to keep my allergies in check or my symptoms get worse, too. I still find that odd, but I take my allergy meds to keep things under control. I take Mestinon and it DOES help my fatigue. I didn't think it would! You have to find the right dose for you and if you go too much, boy do you have a bad day or two (overdose symptoms listed in the pamphlet). But a right dose helps me...

Hang in there, flare ups can suck so much. I'm feeling crappy today compared to the last week, also... :/ Weird symptoms in the middle of the night. What moon stage is it, guys? LOL It's hard to get enough salt. I just ate some Pasta Roni. Salty Goodness. :/

I'm wondering too...just 'in case.' Firewatcher mentioned heavy metal testing so maybe we can bring that up with our doctors? Is it a fairly simple test procedure? But you'd think it'd show up earlier. I bet, now that it's many years later, we'd test ok but any damage that's done is done! Or who knows about our parents and grandparents exposure to things in the past. That's almost impossible to track down. It just seems POTS is getting more news coverage and is a fairly 'new' disease. I know it's existed, but wonder if it was this widespread or it's hitting more people now (like Autism supposedly is).

I was talking to someone about playing with mercury as a kid (so many people used to do this, plus mercury hides in a lot of older things so many people get exposure at a young age). I looked it up and found this article. Here is the part that really jumped out at me: Mercury is known to affect the migration of brain cells in fetuses and might prevent the brain's signal transmission pathways from developing properly. The researchers think mercury also damages the autonomic nervous system, which tells blood vessels when to contract or relax and the heart how fast to beat. I would think that this would show up as childhood/teen POTS, though, correct? It wouldn't pop up 25 years after playing with mercury, would it? Or is it bad just having mercury in things in an older house? Or possible contamination from fish, dirty air from power plants, etc? -------- Mercury damage 'irreversible' By Elizabeth Weise, USA TODAY Scientists at the Harvard School of Public Health have found that methyl mercury contamination of seafood can cause heart damage and irreversible impairment to brain function in children, both in the womb and as they grow. "If something happens in the brain at development, you don't get a second chance," says lead researcher Philippe Grandjean. The findings come a week after the U.S. Environmental Protection Agency doubled its estimates of how many U.S. infants are exposed to mercury in the womb. New data suggest that more than 600,000 infants are born each year with blood mercury levels higher than 5.8 parts per billion, the EPA level of concern. Grandjean and his colleagues report in the Journal of Pediatrics that electrical signals in the brains of children exposed to mercury aren't transmitted as quickly as in unexposed children. They also found that mercury appears to weaken the heartbeat. The researchers studied more than 800 children born in 1986 and 1987 in Denmark's Faroe islands, where seafood makes up a large part of the diet. Their umbilical cord blood was tested at birth and hair samples tested for mercury exposure at ages 7 and 14. The average exposure levels were similar to the EPA's recommended limits. In addition to the blood standard, the EPA limit on mercury levels in hair is 1 microgram per gram. The Faroe study is considered the best available, so much so that in 2000 the National Academy of Sciences concluded it should be used by the EPA as the "critical study" for deciding safety levels for the deadly pollutant. While the Faroese children consume a lot more fish than U.S. children do, it's also a problem in this country. As many as one in six U.S. women of reproductive age might have mercury levels in their body that could put their babies at risk, says Gina Solomon of the Natural Resources Defense Council. Mercury is known to affect the migration of brain cells in fetuses and might prevent the brain's signal transmission pathways from developing properly. The researchers think mercury also damages the autonomic nervous system, which tells blood vessels when to contract or relax and the heart how fast to beat. Most mercury contamination comes from coal-fired power plants and plants that make chlorine and caustics often used in detergents, Solomon says. The mercury is absorbed in polluted water by algae, which is eaten by fish. Researchers were unable to identify a threshold below which mercury did not hurt children. They found that at age 7 the children were behind about 1.5 to 2 months in development for each doubling of exposure over EPA limits. The delays found at 7 existed at 14, meaning the damage is probably permanent. Women who are pregnant or who think they might become pregnant soon should be prudent, says Philip Landrigan, a professor of pediatrics at Mount Sinai hospital. "That doesn't mean don't eat all fish, but maybe not sushi. And pregnant woman should limit consumption of canned tuna to no more than every week or two." The U.S. Food and Drug Administration advises that pregnant women consume no more than 12 ounces of cooked fish a week.

I tried Mestinon/Pyridostigmine for a month at 60/mg morning/evening. I didn't think it was doing much so I tried 180mg (timed-release) and had the really bad side effects (tingling, twitching, lethargy, etc). So my DR and I decided to drop this. A few days later I was feeling much worse again so we put me back on 30/mg morning/evening and it is helping. I'll probably be back up to the 60/mg morning/evening next week as that was my original working dose. I just wanted to get back slowly. They think I have post-viral POTS (my sister has POTS symptoms, too, but maybe it's a genetic trigger we carry?). Anyway, the Pyridostigmine plus BB plus Midodrine are helping me live a more normal life. Not normal like it used to be but better than it was. I'm still not sure what the he77 it does, though! (Pyridostigmine)

I guess it is just something that drives some of us mad! I do only try to test if I am feeling really symptomatic, and that has helped. I need to drink enough. I've been bad on that lately. I'm tired of drinking when not that thirsty! :/ But I must...

I still find it odd he doesn't mention Midodrine and BB together as a treatment, it's not one or the other always. My BP varies a lot, but tends to be anywhere from 90/60 to 135/90 (so not so horrible, in the grand scheme of things) but I take Midodrine or it will get a bit too low for me.

Over the years, I was pretty much told the same. For a long time, I disregarded it. However, it finally was brought home to me that my needing a beta blocker wasn't just about me feeling better, it was indeed about my staying alive. My heart rate was out of control, my blood pressure often spiked and often stayed high for hours on end, and I had probable coronary artery spasms. That said, the beta blocker did make me feel better, too. Even helped with migraine/cluster headache frequency and intensity. Same here. I didn't want to start a BB thinking it may be a med I have to be on forever...but I guess it's better than the alternative. I'm able to get by with 20mg/twice a day right now. When I start working full time again (here's hope) I'll probably do 20mg/three times a day but my EP says this is still a low dose (generic of Inderal). Talk to your doctor about it, but it's always better to start low and work up!

1. If I have to be out and about, I always grab a Latte in the AM. It helps. I also find an iced tea or something similar to help in the afternoon if I am out walking around. But a latte in the AM is really needed to kick start my day when I'm working! 2. I think it increases my BP along with my Midodrine in the AM and get me more functional. Not sure...but a combination of the milk (protein + hydration) plus caffeine from espresso works. It's better than normal coffee for me, even. Since I'm on a BB, I don't think it does much to my HR. 3. My hands tend to feel colder. And feet, on touch.

Just some more information in case it helps anyone. I started Mestinon and wasn't sure if it was doing much. So we increased my dosage and I had the overdose side effects for a day (horrible but most of us are used to that kind of stuff unfortunately!). I was off it a few days after and really noticed my symptoms flaring up! So I'm slowly ramping up my dose again and feeling a bit better. "High Flow POTS / peripheral neuropathy - the most common form of POTS caused by either an autoimmune or autoinflammatory (or possible nerve injury) that results in reduced expression of norepinephrine receptors in the lower body. This leads to pooling in the lower body on standing, and an excessive norepinephrine and beta receptor activity in the uper body to compensate. mestinon may also be helpful by increasing receptor activity and thus lower body vasoconstriction." So I wonder if I have this guy...my sister seems to have POTS symptoms, too, though, but I guess we could be genetically inclined to get it from some trigger that causes it... I'm sure it'll be trial and error for you with medications. Usually you have to try a variety of stuff unless you get really lucky. I wish you well!

The good news is I've gotten over checking my BP 'too much' as I think it was driving me insane. But when I'm feeling extra-crappy (like when trying to get up and moving this AM), I took it. It was 95/75. This was about 45 minutes after my AM medicine, so they hadn't kicked in. About a half hour later it was a more tolerable 107/77 and I could function much better. My EP said POTS can cause crazy blood pressure fluctuations. And since I'm on a BB I really have to take the Midodrine so it doesn't go too low (and I agree, I could not handle a BB without Midodrine!) I think when I'm more dehydrated, my BP is too low - do you guys see this? When I have to jump start my AM, coffee helps me too if I have to walk around, especially. I notice a big help (and my EP has seen this in SOME patients, too). I also don't shower in the AM as that makes things too nuts. Really I can't get a grasp on to how to have more control over the BP fluctuation, but maybe I am just asking for too much!

I was on Seasonique (or a constant-dose pill) for years because I just couldn't handle much of a menstrual cycle. The cycle plus menstrual migraines were bad even before POTS. The Seasonique was still working 'ok' but my Gyno didn't want me to stay on it with Midodrine (blood pressure issues), so she told me about Mirena IUD. It's used a lot outside of the USA (Europe, Canada, etc). I'm really not sure why it's not used as much here, but I like it. It hurt to get in for a few minutes, and I had horrible cramping for 24 hours, but that was it. I've only had spotting. No menstrual pains, migraines, etc. One thing, she said, is a lot of health plans don't cover it. My new health plan doesn't unless it's medically necessary, which it is for my case so I carry a letter stating why it is. Good luck. It is trial and error. My Gyno just asked I try Mirena for 3-6 months...if it doesn't work, it can come out easily. But I like it, so that's a big relief.

I'm glad you found out something important at the visit, although it wasn't what you wanted to hear, I am sure. But at least you know what you're dealing with which is half the battle, right? I looked up Dystonia - were you experiencing any of the symptoms with it? How did Grubb discover it? I have recently started Mestinon for my POTS and I think it's helping a bit. What dose did he put you on and does it seem to be helping? Good luck with all this.

Thank you everyone. I do not feel bad about doing this any longer. I see my new doctor this week (since the move) so I will have to explain my sensitivities, that the doses I am on work for me now (even though they aren't standard), etc.

I hate starting new medicines too, but for the most part I've been fortunate. No absolutely horrid experiences. My worst experience was increasing a dose of something I'd been on (and was helping) which was a big set-back for a week for me...so while it was a couple really crappy days, I was still 'ok.' Just remember, if something doesn't work you don't have to stick with it. I try to give things enough time to work (if they are causing no great harm)...but hopefully it will work for you!

As many of you know, I've had to juggle a lot of medicines (with setbacks here and there) to find a decent mix. Anyway. It seems to get the 'best treatment' from my meds I have to somewhat self-manage them. I've got the 'ok' to do this with Midodrine (some days I need to take it twice, some days three times) and my EP says this is common. When I try a new medicine I'll often try a lower dose than prescribed and work my way up. Sometimes I come clean about this, sometimes not, but I do not like jumping into something full-strength right away. (I'm not talking about things like allergy medicines or antibiotics, I'm talking about POTS-related meds). Now I am back on Mestinon (was taking 2 X 60mg/day) and then tried the 180mg timed release which was pretty much an 'overdose' dose and I was terribly ill all day and twitching. Now I am taking 2 X 30mg/day for a week, working my way back to the 2 X 60mg/day that I was on...my EP said to 'get back on it' since it was helpful, but I'm doing it at my own pace. My family sometimes gets irritated I do this...but I know it's easier on my body to work my way back into my old dosage (or to ramp up a new medicine). Is this terribly bad?

I finally was put on Midodrine, Inderal (BB), and Mestinon. Together they were helping enough to get me to function and feel just 'ok' for having POTS. I tried a higher dose of Mestinon the other day and that backfired horribly. But now that I'm completely off the Mestinon I am feeling worse with higher heart rates so my doctor wants me back on the OLD dose of Mestinon. My pharmacy won't have it until Saturday, of course! Not a common medication, I guess. I was told it usually takes a while to build up a tolerance to a BB and that you can take a 'break' for a few days (I think the doctor said it was a drug holiday or something) or if you're on a low dose raise it modestly. But I haven't had to do that yet and he said many people have to be on BBs for YEARS so this is fairly common to deal with. We'll see...my dose is still ok. You can ask about that or about trying something new. What is the worst problem that is causing your wife not to function? Do you think the HR is what's bothering most at this point? My doctor said my Midodrine can be varied a bit, as needed, for me so you may want to talk to them about that. I'm living with a bit higher BP overall to feel better. I've actually quit taking my BP i as much unless I'm feeling really off, but I was told not to worry about anything below 140/95 for ME. You will have to work with you doctor to see what's right for her as POTS is so bizarre. I think with my BB + Midodrine, my BP is behaving better than it used to! I do feel I've had to compromise on some aspects of my health to function, but it's a choice I had to make. And a lot of trial and error so you'll really want to make a list of questions to bring the doctor and work on a plan...plan a to try this, plan b to try this, plan c to try this. I had to do that to get a bit better. It's frustrating, I know!

My doctor has told me to go back on it since my symptoms are worse now...60mg two times a day. I guess when I want to go off for real I'm going to have to taper it somehow. It's supposed to be one you can just stop...but that didn't seem to work. And too much of a dose is not a good thing, either!

I think the weather will be quite similar to Ohio. Champaign can get hit with a lot of snow in the winter, but so can Ohio! Chicago does have some decent doctors who understand dysautonomia (my EP was great and I miss him since moving to SF!). PM me if you need his contact info. Good luck in your move - moving is always stressful no matter how much one plans.

I take a BB AND Midodrine to help with the rate and BP. Odd balancing act, I know.

Good to know I'm not 'imagining' all this. But yeesh. Talk about a picky condition to have.

I find it hard to believe a DOSAGE adjustment could cause this much of an issue. I was on Mestinon for 2 months, 60mg, once in the AM and once in the PM. I couldn't say for sure it was helping or not (hard to tell what the Midodrine, Mestinon and Inderal do together!). That ran out so to see if it would help more + for convenience to only take once a day I switched to the 180mg timed-release which said it releases 60mg instantly and the other 120 over several hours. With that I had the bad side effects noted in the literature which are usually a sign of overdose. It was an awful experience and I was down that whole day. Now that I'm completely off Mestinon I am much more Potsy. I was doing better with the 60mg twice a day...now I'm doing worse without it...but I was doing HORRIBLE with the 180mg Timed-Release. How can such a 'small' dosage increase matter? Some people mentioned the non-generic Timespan seems stronger but I don't know how accurate that is...you'd think generic/non-generic of Mestinon would be similar as it's an old medicine. Anyway. I'm beginning to think I'm losing it because the lower dose helped, the higher does made me sick as heck.

Firewatcher, Thanks for these tips. I'll start at Craigslist and disability service and go from there...hoping the couple of doctors I have lined up out here can help, if necessary, for verifying my disability. I'd be a teacher if I had to have a job. Probably high school history or English! And it'd kinda work with my situation. Decent beneifts, decent hours, summers off...my income wouldn't be great, but I'd be happy. Currently I'm trained in Media & Marketing which I like, but have to be sure I can handle the workload where I go (can't deal with much travel any longer).

Hey, Ramakentesh, Question about this for dysautonomia... If some of us show this high level of norepinephrine (I don't know if I do - I also don't know if it is directly related to POTS or all OI)...does a BB help this particular problem? My EP has me on a BB and Midodrine. BB for my heart/tachy and Midodrine to regulate BP somewhat. It's been trial by error but whatever 'OI' someone has - I think it's a lot of trial and error to get better.

A "Daily" latte or so really helps me. I'm not working right now (need to) but if I have one right on the way to work, I feel much better. So BB + Latte + Midodrine does help. I tried no caffeine for one month and was worse, so my EP said enjoy my daily Latte. Also if I'm out and about and feeling Potsie, I try to stay hydrated but sometimes a coffee really helps that too!