iheartcats

My EP told me he sees BP all over the place in POTS patients. I asked why mine varied so much, and that's 'normal' for what I have, he said. I'd just take a big list of questions (write them down or if you're like me you'll forget 75% of them), read through info on here and the FAQ, etc. If you still feel like you may have POTS you can try to get a 2nd opinion (someone could read the results from the test) if it makes you feel better.

Totally understand. It's almost if you're under 50 and look healthy people think you're weird clamoring for a seat. :/ Even family doesn't quite get the sickness. Yes, I look ok usually. Yes, I take meds to reduce my heart rate and it helps. Yes, I still feel fatigued/dizzy/weird frequently and nothing is curing that. It's a hard disease to explain, too, so I guess the 'heart condition' is good enough for brief encounters. I think I'll steal that, Melissa! Just know you're not alone, Jump. I know how you feel.

Hey guys. Doctor called. He said not to take it any longer (this does was just too much)...and the side effects will wear off as the medicine gets out of my system. I've forced myself to eat, too, even though with the stomach issues and tingling (even the mouth/tongue is kind of tingly at this point, ugh. Tingling tongue is awful feeling) it's difficult! I'd rather not have this much tingling again. It seems to move from body part to body part. Now I'm just waiting for this to be out of my system completely tonight. Argh!

Hmmm. I just posted about some bad side effects on my new increased dosage! I'm waiting on my doctor to call, but how weird is it that such a small increase in a medicine can send you over the top.

I sometimes get this too. I just assumed it was somewhat normal. It's annoying (especially when you are trying to relax or go to sleep though!).

I increased my Mestinon to a timespan version (180mg) today. I took it about 2 hours ago. I was taking 60mg twice a day (about 6-8 hours in between doses). That was 'ok' - I don't know if it was helping, really, but not doing anything bad. The timespan dose was just too much. I'm a lot weaker than normal, very 'tingly', some stomach/bowel issues, and I think it's affecting my asthma a bit because breathing is a little more difficult. I CAN take a deep breath now, so I'm relieved that didn't get worse. I went and read all the side effects and these are all common on Mestinon, especially a too high of a dose. I'm so annoyed and just waiting to get it out of my system - I read the timespan releases 60mg then 120mg over the next several hours but it is apparently not that 'reliable' for releasing. Nice! I have a call into my doctor (he's in another state now). I understand if it was life-threatening to go to the ER, but I think this is more of a severe annoyance and nuisance. The side effects are NO FUN. Does anyone know how long an 180mg timespan takes to get out of the system? I assume what's released starts getting out, then more is released, and I'm hoping there is a point when it's just like the normal 60mg I'm used to and these side effects will subside. How can a dosage of something cause so much havoc? My day is pretty much ruined as I don't want to do anything to exacerbate the frightening side effects (breathing issues). So frustrated!

Now I'm really stressing about finding work - it seems so difficult already I just don't know where to begin.

I wish I knew what type of POTS I have. I'm sticking with the Mestinon for now because my current mix (Mesitnon, Midodrine, Inderal) is making me feel 40-60% better on average. I don't want to lose that... I know people are afraid to try new meds (I am one of them) but now that I've found a mix that helps I'm glad I gave in and tried.

Interesting how these things play out in people. I had that blood test for Mastocytosis (negative) - isn't that the one where your white cells or something will ALWAYS be elevated if you have it? But MCAD. That's the hard one to diagnosis. I wish I could find out! This article makes me feel better, though, because I've eaten something and then got hives + nausea + diarrhea and people think I'm nuts because all food allergy tests are negative. Ahhhh! I need to scream. Ahhhh!

My doctor said to try the 180mg timed release version for a month (especially since I already have bought the bottle of it!) and it I see no clear help, go of it for a while. If I notice a difference (or feel the need to try it later), he said I always can. But it is hard to notice an improvement on some drugs and I guess if one doesn't, why stay on it?

I'm tempted to chew on the herb! JK Not a good idea, I know. Goodness. It's hard to keep up with all this. I'm sure the drug will take years to develop.

I've not had mine checked. I think I'll bring this up with my next PCP visit. I do seem to eat a lot of salt and can tell if I am not getting enough salt/liquid. I do pee a lot. :X

Now that I've moved I have to look for new work (and no FMLA protection for a year - that *really scares me* but am trying not to focus on the negatives too much). My husband and I decided I could take a couple months to settle in (if all goes as planned) and then start looking. I'm on a new medicine regime that is helping me (still can't kick the weird fatigue, though, but other things have improved somewhat). I hope to see a POTS specialist in the next month or two to see what else I can do to improve my chances of feeling better/holding down a job. I know what I can't do - a standing job, manual/lifting work, etc. I know it has to be a 'desk job' with reasonable hours, no demanding overtime. I'm worried in this economy that will be hard to find, and I don't even know how to bring up how I really need somewhat stable hours. I don't want them to think I'm a lazy slacker, because that's not it at all. I just really need to balance my health with work. From what I understand, you have to make a good effort to work/take care of yourself before SSDI, etc. and I'm willing to do that. I just don't know where to begin finding a job to accommodate me! I have spent most of my career in marketing/advertising/writing.

I find all insurance moderately confusing and am hoping it can be made more reasonable for everyone in the future! In the meantime, the HMO is through my spouse's employer and reading through all the plans, it seemed to provide the best 'overall' coverage even though it requires specialist referrals. I know I want to start with Dr. Friday (and I've already seen so many specialists before I moved) and see where that goes. At least I have a bunch of stuff I've tried behind me and I know it can take months to see a specialist so at least I won't be seeing some big-time specialist every few weeks so hopefully can stay under the radar! I looked up the PPO plan you mentioned - did you get it before you had POTS? How do they handle pre-existing conditions? It looks like a decent PPO plan (no deductible - the ones I was looking at in comparison to the HMO had 3500-5000k deductible.) The SF On-call sounds great. I hate going to the ER for anything (avoid it at all costs, always have). In the big cities they are overfull from minor ailments, it seems, unfortunately. Didn't even think of Planned Parenthood. I'm not working now - but even if I'm working it sounds like I can still go? For some reason I just assumed it was for non-working/low-income only but if not that's a good idea. Thanks for everyone's advice. I'm trying to get a couple letters from my doctor and gathering all my medication list to take to my new doctor. I think this changing doctors/medical stuff is worse than moving. Almost.

Hello, all... I've been on my Mestinon twice a day (60mg) for about two months now. I will start the 180mg 'timed release' version next week because it's a slight increase in dosage and easier to take. I'll admit I've forgotten to take a Mestinon here and there and not noticed. If I miss my Midodrine I notice, and my BB I really notice if I miss. Same with my Zyrtec and Ranitidine (helps hives!). So. I've decided I'll give the 180mg timed released Mestinon a go...but how can I tell if it's really helping? I don't like taking a medicine that really doesn't work for me. I'm not noticing anything negative, but nothing totally positive yet either. Thanks!

Hello everyone, The last month I've spent moving across country, dealing with some intense family stuff, and trying to unpack, settle, etc. Somehow for the month of the move, I kept up. But I am paying for it this week. I'm so tired/fatigued and everything just feels 'heavy' (arms/legs) but I'm forcing myself to work on unpacking and things when I can. I have a few 'pressing' questions that are starting to worry me...so any advice you can share will be helpful. ---We are now on an HMO plan The cost of meds + copays + deductibles in the PPO were very, very high. The doctor I've been recommended is on the plan, so that's a plus. Here are my outstanding questions... A. Will the HMO be likely to question my use of medicine (Mestinon and Midodrine, specifically) as it is not normally prescribed and Midodrine and my BB even somewhat contradict themselves. I have to use all Generic (no real choice)...but my former doctor said generic Midodrine may just vary a bit in strength and not to worry too much about it. B. How hard is it to see a specialist if needed? I used to self-refer when needed on the PPO (not often, but I need to see a local POTS specialist a couple times a year, at least. Maybe another specialist or two for other things). C. I have an IUD. The plan doesn't cover IUD unless Oral Contraceptives are not medically viable. In my case, my prior doctor said they are not. What do I have to do to prove this (like when I need a new one, when I need it checked, etc). Thanks so much for any advice on HMOs. I appreciate it!

Thanks for the advice. So far while annoying, I think the fatigue is tolerable. I think the packing/cleaning/organizing will be worse than the driving. I don't want to stop it and throw myself off completely right before the move so I guess I will try to make it out there and then stop it if I must. (Fatigue doesn't' lessen or worsens). From what I understand, 60mg two times a day is a very small dose...but I guess with us POTS people it is enough to cause fatigue! Does anyone know if Mestinon is a drug you can stop without tapering off? (IE - if it gets worse and I just have to stop it?)

Hello, everyone - I'm off on my move across country in a few days and trying to be as stable as possible and of course don't want to throw any big changes in the mix at this point! I recently started Inderal (BB) with my Midodrine and it works pretty well - I'm liking it and it keeps my heart rate in a more normal range. Soon after I started Mestinon (60mg/twice day - a fairly standard POTS dose from what I read). I didn't experience anything horrible except some stomach issues the first few days and then it stabilized. But - the last few days I've been feeling more fatigued than usual. Tired, muscle aches, and just that general fatigue. I was feeling better last week. I don't know if it's the packing, stress of what's coming up, and all the extra stuff I have to do for the move or if it's the Mestinon that's making me weak/fatigued. I don't want to throw off my medicine routine as it's working ok overall right now and this could just be stress + not sleeping well. My PCP said I could take an Ambien with my med mix (I was worried about adding to what I feel is a big list of meds) but she said sleep is very important in the days ahead on this move and it'd be fine. Does Mestinon sometimes add to fatigue? Would I be noticing if it's helping or hurting? I don't want to jump on blaming it when so much else is going on, but this is really frustrating me.

I never thought of it that way, but it makes a lot of sense. I'm so excited I'm feeling better I don't want to jinx myself. Before BB I was more miserable than I even thought!

I work. It's been hard this last six months (was on FMLA) but now I'm moving and have to find a new job so no FMLA! I had to find a medicine mix that worked...So I guess my advice is find a mix/dosage of medicine that works to make you feel better. I know the weight gain *****, but if it really helps...maybe talk to your doctor about how not to gain so much/feel bloated? I'm not familiar with Lexapro, though. I have to 'sacrifice' life to work a bit...I can't go out and hang out a lot and do little outings and things as much, but you have to find a balance that works. I try to do what I like best. Good luck!

Inderal (propranolol) - I take 20mg twice a day right now. It's working ok. I'm maybe a bit more dizzy than before, but it's hard to say. I'll take that for feeling better overall, I guess!

Wow. Didn't realize how much there are. I've not had one yet. High deductibles are painful, no? I just met mine last year and then the new year started. :/

Since I'm moving out of state, and he's got me to the point where I don't feel like hiding under the bed the entire day, he did get a moderate friendly hug. LOL But I'm kinda like that. They 'think' I have post-viral POTS so I was always hesitant to try a BB. But once my asthma test came back clear (no symptoms in years really, thank goodness) I decided to give it a whirl. Still we are on such tiny doses, Firewatcher! 320mg isn't unheard of so I'm amazed what 40mg can do for me!

I've forgotten normal! I've been somewhat 'anxious' today (ie: panicky) because it's so LOW it feels WEIRD. It's hard to believe I'm feeling quite a bit better on this one little pill twice a day. It's nice when you find something that actually works ok. Thank you for replying back. I'm feeling better now. It's sad what we all have to get used to!

I'm getting used to my Beta Block (the generic version of Inderal - Propranolol). Right now I take it in the morning before I get up (20mg) and then after lunch (20mg). If needed my EP says I can work up to 60mg a day and take on in the evening. Today I am wearing my monitor and my rate is in the 60s (63-67 on average) this afternoon. Compared to 75-110 I used to get sitting, this is really down. Walking around it's in the 80s! I'm used to it being 110-140 walking! I just wonder how low is 'too low' (I'm feeling ok) and what kind of variations you guys get with your BB. I know as it wears off later in the day, walking around it gets back to 90-110 or so, but that's a heck of a lot better than 120-140 which was more of my old average. Thanks for any input. I'm still working on getting the dose down (and my doctor said at these low doses he's comfortable with me adjusting a bit to get the right mix and understands how hard it is). I guess I'm not used to my heart being in the 60s. :/ Seems so LOW.