iheartcats

I don't go to bed/get up the same time every day as I know I really should. I'm working on that. I usually get up within an hour or so each day, though, so it's not a huge deal for my medications. Today I had to get up about 3.5 hours earlier than my normal and took my medicine on that dosage. That means they wore off earlier this evening (9pm) rather than my last dose lasting toward my bedtime (around midnight). When this happens (like now)...I'm feeling the normal fatigue/tachy/OI, but also like I'm having a 'panic attack' in my body. I can feel my heart thumping in my chest even though it's not going horribly fast sitting here. I suppose I should've taken an additional BB (for an early schedule I can take up to 3 a day)...but it was getting late by the time I remembered and don't want to take one so close to bed. Is this normal? Is it just my unmedicated POTS acting up, or am I more used to the BB and it's a bit worse when it wears off (rebound tachy)? I hate the thumpy feeling.

Do you think it'd help your 'type' of POTS? I'm still trying to get my head around what type I have (but BBs do help, but so does Midodrine)... Would the same people who benefit from this benefit from SSRI/SNRI if it is partly an NE issue?

I just found this! http://www.medscape.com/viewarticle/474871 It may be a dermatologic clue to a serious medical underlying illness as lupus erythematosus. Disturbances of hormonal and autonomic regulatory mechanisms may also contribute to this condition. It seems to occur more in women than in men and usually in the 3rd decade of life. WHAT! I'd never heard of this, I seem to have it off and on in arms/legs. Yuck.

Have never heard of livedo reticularis, but it kinda looks like that. Oh joy. I'll bring it up next visit, but I do get positive ANA tests so there you have it, eh?

Oh...my insurance doesn't cover anything that's not generic. It's so painful if there is something that's really helpful. (Hoping for National Healthcare). I haven't found a drug yet that is not available in generic that'd be helpful, but this looks like one! Let's hope it's affordable and useful for us all!

I take it about 2 to 3 times a day (third as needed), usually 10mg, 5mg, and 5mg. I'm allowed to adjust within reason (10mg, 10mg, 5mg), etc. I also take a Beta Blocker and it works well together with me (very low dose BB, per my PCP) but the mix helps. I haven't had to increase my dose much yet, but at least I have room to do that in the future. Good luck with upping the dose, I see a lot of people become more immune to meds than others. POTS is fun.

I'm feeling like a weirdo on this one. I am alone!

Yes! I can 'scratch' a blank spot and it gets all red and hivey in that area! Exactly! Is this related to POTS or is it just something that happens to some people and they don't know why? Mkoven - do you get this?

On occasion, usually when stressed or having allergy flare-ups, but it can just be on its own or in the AM, I get these weird red veins that show up all over my upper arm (and a bit on the lower). I should try to take a photo (hard angle to do on my own with a Flash), but it kinda looks like this but not as severe: http://www.veinsveinsveins.com/app/webroot...angiectasia.jpg The thing is, I don't think it is thread veins because they go away! They don't hurt, they are just ugly and embarrassing and weird. It's like someone drew on my arm with all this red ink. A crossed vein motif! My arm is fine now, so they do go completely away. Anyone have any ideas on this bizarre symptom?

Thanks, Flop. Glad to know the heat and shower hives aren't real allergic reactions. Food can really cause these, too? Hmmm. I'll have to pay attention if I get more flare-ups with spicier foods! Oh - does anyone know about itching? Do any of you get 'red' hives from itching?

I've always had motion sickness, even as a kid. If I drive I'm much, much better - 90% of the time I'll have no motion sickness. But being the passenger in a car or plane can bring it on, especially early in the AM or if I'm really hungry/dehydrated. I know other people who have it without dysautonomia, so I think I've just always had it like that. It didn't come on with POTS.

My current BB, Inderal (Propranonal - Generic) is working well. I'd say my current med mix makes me 50-60% more functional, and that's the difference between being able to work PT or not. A huge deal. I've been researching online because I get random allergic reactions that can't be pinpointed. My most recent was eating pancakes - hives, upset tummy, diarrhea and I had to take a Benadryl which fortunately calmed it down. I have no food allergies per my test, but I don't eat nuts because of a severe hive outbreak from Cashews. Why eat them if there's an issue, right? I carry an EpiPen just in case, but I read they are somewhat dangerous with BBs. I also read that BBs can make Anaphylactic reactions worse (and technically my hives + GI issues = Anaphylactic reaction). So. My current BB is great, I'm on a low dose, and it's helping a lot. My allergy symptoms are about the same as when I was not on it. My allergist advised the lowest dose I can get benefit from. Right now it's twice a day, but I can tell it's wearing off quicker so may need to add a dose soon. All this online reading has made me anxious and I wonder if it's worth looking into a selective BB (or maybe only if I notice my allergic reactions increasing). It is worth bringing up to my doctor this week (she's one I only see every few months). Do any of you with allergies take BBs? What do you take and are they effective for your tachycardia? What types of selective BBs are more safe for us allergy sufferers?

Thanks, BJT - It makes sense because some of the expiration dates seem so arbitrary. I think my as-needed guys can go about 6 more months so at least I won't feel wasteful. I'll have to calculate what I need in the future for those!

RX medicines don't come with an expiration date except to say 'discard after one year.' At least mine don't. I was told to keep all my RX meds in a dry, dark area to prolong their life. What really happens when a med expires? Is it just a loss of effectiveness? I know a few meds are dangerous to use after expiration but these are usually clearly noted. And my Epi-pen is clearly dated. I have a couple as-needed medicines that I probably won't use up in that 'discard after one year' time frame, and I hate to throw them out if they still have a few months life left in them.

I'm glad I have Global to start with, then the Apo one since Global doesn't make 10mg any longer.

I just looked at my bottles...I have a backlog as I had to get 90-day supplies with my last insurance so I have two Global (says on bottle) and one Apotex (says APO on pill so I'm assuming). The good thing I probably have enough to last me 6 months and since those are good brands I'm relieved. When I need a reorder do I tell the pharmacy what brand works, or do I call around to find it out? They are 10mg pills so I assume I got the last of the Global (and I do remember my insurance company taking a while to fill my RX in May). I'll go through these (and they look scored enough to cut, here's hoping!) but the Apotex doesn't look easy to cut.

Thank you. It's always hard to have to readjust a dose (and I'm so sensitive to that like other POTS people). I guess it'll be close monitoring for a few days...

-Visual floaters -Flu-like feelings some mornings -Weird dull, painful aches in my muscles...flares up some days, not others -Temperature sensitivity -Random fatigue -Thirst...I sometimes worry I drink too much! -Frequent urination -Sleep disturbances

Yippee! Thanks for the good news update. I'm so glad it went well.

I just had completely random hives the other night while eating. It's like I react to something one day, don't react for weeks, then it happens again. I also got a round of these yucky, itchy things from a stressful phone call recently. I have mild hives after each shower or bath that go away on their own within the hour (not nearly as itchy/bothersome as the other incidents). My former allergist had a hunch mine had something to do with all the autoimmune stuff, rather than a specific allergen. I have no food allergies per the test, but do have airborne allergies fairly badly. I take Zyrtec and Zantac, and Nasacort during the worst seasons. When the hives are really bad, I take a Benadryl or two and they usually calm down in an hour or two. It is very frustrating, but there's no rhyme or reason with them except the stress incidents and shower. What has helped, I think, is a daily Zantac (150mg) at night. I seem to get them less. On a side note, my allergist I was seeing before I moved said he's seen these in people before and they can hang around for years, and THEN JUST GO AWAY for good. Odd.

Since I have to switch to generic Midodrine this week, and I've heard from various people that it often doesn't work as well/seems less effective, what should I watch for regarding low BP symptoms? I think my Beta Blocker is what really is helping my tachycardia. The Midodrine, from what I understand, is supposed to keep my BP from getting too low on the Beta Blocker. My BP on the current brand Midodrine ranges from about 100/70 to 125/85 (I don't take it too often, but it usually falls in this range when I do). Is the generic likely to cause it to swing significantly lower? I need to keep it above 95/65. Thanks!

I had about 20 vials of blood pulled once for an Endo (big mistake). I had crazy HRs, severe dizziness, and was really ill for about 3 days. I can't handle more than three, and that's only if it's really, really necessary. Taking 7 vials is a lot - did you feel dizzy at all during the pulls? Are you feeling any better yet? Be sure to stay hydrated and I always try to eat something even if I don't feel like it.

Mine was fluctuating between your ranges for a few months an I was upset about it. I was told that can happen in POTS (not much help, but supposedly not out of the ordinary). Yours sounds like it is staying consistently high, though...I remember my EP told me not to worry about anything below 140/95 so you may want to work with your docs to find a 'safe range' for your issues/condition/health. I still take a BB so I assume that should be lowering mine, and take Midodrine to pump it back up to something normal because of that. Good luck and let us know what your doctors say because I still think it's bizarre how BP fluctuates so much in some of us.

I think I notice an increase in pain and not enough fluids/salt, come to think of it. The last few days I've been more 'thirsty' so not getting enough done (I do get so tired of drinking...I justify my coffee as a Latte - Milk + Caffeine so at least I'm getting some hydration). I'll try stretching in bed. What an awful situation for a 12-year-old. I'll let you know how it goes and thank him for the tip and be sure to let him know he's not alone. Now I find it very weird POTS can mimic Fibro so much. :/ And the pains...they are quarter sized. I know what you mean. And they pop around here there and everywhere, but concentrate in my legs/arms. It's sort of like menstrual pains in my limbs! I have to pay full price for any non-generic RX so if it's not Fibro (which it probably isn't) I guess I'll skip trying Lyrica for now and see how stretching, better fluids, and even Advil help at its worst. I really hope this is a passing phase as it hasn't shown its head in the past 18 months!

On the one hand, I'd rather it not be Fibro. On the other hand, it ***** this has to be a possible POTS symptom! I hurt so bad when I get up...I have to make myself get up and move. Once I'm up and about a couple hours I'd say the pain goes down about 80% on average. Sometimes more, sometimes less, but usually about 80% better. I guess it is a POTS thing with our circulation (who knows what is going on). As it improves as I move...and for you guys somewhat too...it sounds like it's our ANS symptoms waking up? What pill were you on that retained water? Maybe I should ask to give that one a try if it's safe with my other meds. I am learning to deal with fatigue, but the pain is horrid. And I need to start working soon and at this rate I'll be in pain getting ready and have to get up early just to get things flowing correctly. Thanks for making me feel better in that it might "just" be POTS!