iheartcats

It's looking like I may be embarking on a cross-country move soon (well, around 2000 miles). I'll be driving my car with my sister and cat, my spouse his car. I have the normal POTS issues (but not fainting, thank goodness). My worst symptoms are fast heart rate which often leads to fatigue, needing to stay hydrated, having to hit the bathroom a lot, some muscle pain, and general crappy feelings sometimes. What I need to control for this trip is my hydration (which I'll just have to drink a lot of G2 and salt) and my heart rate. My heart rate has been out of control lately. I used to have asthma, but it's been under control for a few years. Do you have any advice on a Beta Blocker I should try? I know one was talked about on here recently but I can't find it. Sometimes my rate averages 100/day and it's horrible. Makes me so tired and can't be healthy. I need to see my EP this week to get on something and would like some experiences you've had. What side effects should I worry about with a Beta Blocker? I'm probably moving about 3 weeks out so need to start one to make sure I'm somewhat accustomed to it before the trip. I do get allergies/random hives but my allergist is ok with the Beta Blocker as I tested negative on food allergy tests...and take Zyrtec/Zantac for the hives. Life throw a curve ball sometime and I'm trying to stay calm.

I need to start my Mestinon (tomorrow, I think)...and was wondering if there's any chance it can lower HR because mine has been way to high. I wear a monitor 12-14 hours a day and sometimes it's 103 average! Bad! I forgot to ask my Dr. exactly what it DOES. Thanks!

Yeah. I get the feeling some people I work with just think I'm crazy. Really helps, no?

Hmmm. Seems some people take Melatonin without issues, and it bothers others. Seems some take Ambien without too many issues, and it bothers others. I don't know - you may just have to try a few things before you know what works for you. It must just be the Dysautonomia that does this right? Some things work for some people, not for others? I don't know why it doesn't act like other diseases where a set of medicines just work for it. :/

I do work. I was working full time until last fall when FMLA kicked in. Since then it's been about 70% time, I'd guess...3-4 days a week (I have to take time off for doctor visits, treatment, flare-ups, etc). What's scary, at this point I can't imagine going back to full-time and I only have a few months left of FMLA. It won't get me through the year. When I have to work a full week I am EXHAUSTED. The fatigue is the worst thing, so I'm glad you understand. It's so hard to deal with! I am married with a cat, there's no way I could handle a child. I don't know how people do it! I somehow do the laundry, occasional dusting, cat stuff and keep the kitchen and bathroom clean enough to be tolerable. I could NOT do this if I had to work 40-50 hours a week, though. My spouse is a pack-rat so clutter doesn't bother him much, thank goodness. I just have to see how the next month or two goes and go from there. It's so stressful. My grandparents keep telling me I have to do what's best to get well. I do have a tendency to be stubborn and over do things! Do you work? Have kids?

Yes. Midodrine lets me function somewhat in the morning. I don't think I could make it right now without my morning dose. I haven't been taking my afternoon dose much lately, but when I need to I do. I'd see a specialist too.

My doctor encouraged me to wait for FMLA. Then you can reduce hours with a letter from a doctor with job security (up to 60 days a year). So you could work 4-days a week for a year (52 weeks=52 days plus some flexibility with additional days) and not lose your job. I'm personally almost out of FMLA and have taken so much I'm going to run out with 3 months left before the year is up. Since I'm suffering from more fatigue now it's getting hard so I have to check into disability if I don't see much improvement on a new medicine in the next few weeks. It's very stressful. I know I'm eligible for short-term and long-term...but I don't know how it works (do you have to do short-term first, etc). I'd try to hang on until FMLA and use vacation/personal days if you can. If you can make it through until July, you'll be protected. I thought my three months would never get here last year, but they did. Good luck and let us know how things go.

My 'normal' POTS symptoms have been the same...no fun, but 'normal' except my fatigue has been worse this week. I just feel like I have some type of lead weight holding me down, and sometimes feel like molasses. Some days I'm better than others (right now I'm trying to force myself to do a couple errands but had to take a nap first)...and this isn't something I'm used to. I went to see my EP today and told him things are about the same but fatigue so he wants me to start Mestinon tomorrow. 60mg at three times a day (he said people take much higher doses than that, so it's a start). Sometimes it's all POTS people need. He thinks this can help fatigue. Have any of you had luck with Mestinon helping fatigue? Anything else? This has to be one of the worst things I've experienced. I wonder what causes it to flare-up this bad when it hasn't before? My only changes have been some added stress. I don't know how much longer I can keep working with this level but my EP said to give Mestinon a month before figuring out something else to try. Any help would be appreciated. I'm really freaking out about this. I hope I'm not developing something new! I've had positive ANAs before so I've been told to watch for Lupus. Ugh.

I take Ambien when I am having a flare-up and/or adrenaline rush and/or stressful situation. I take either 5mg or 10mg and for a few months I THOUGHT it was making my symptoms worse. Someone on here suggested it might be because I take it during my worse times. So I've tried it a couple times when it's not really needed and I was ok. From what I understand, Ambien is fast-acting and out of your system really quickly. I usually have 30 10mg pills last for 6 months and no dependence issues on any medicines, so my doctors are comfortable with this. Plus they know POTS can cause sleep disturbances. As for Carbs. Yes, unfortunately, for me. I ate a huge plate of spaghetti and my heart rate was around 100 sitting/lying around for about 2 hours. But I love my carbs. I need to cut back though. But I have to live a bit. Alas. I wonder why this is?

It's really hard, isn't it? I know what you mean about wondering if you can get to the car - I work at a place without parking (have to use a garage blocks away) and I get in early to get a metered spot close by covered by my disability plates. Walking for in the morning? Bad bad bad. And the reliability issue. I used to be a great worker. Now I struggle to keep up. So it is depressing. I have cut back my hours with FMLA (use it for flare-ups, appointments, recovery, etc) but I think everything is just catching up with me. I'm young. I need to work. I have more than twice my age to go before retiring (agh!) but maybe I need to take some time off to try to improve. It's been hard already at not getting a full paycheck but hopefully my spouse and I can pull it off for a while. I wonder what else I can do in the future if I at least stabilize. Teach? I think if it were rewarding, at least that'd help me through. Thank you everyone for listening and understanding.

Yes. I haven't tried Mestinon yet and my EP is probably going to yell at me. He thinks I'm stubborn and the most afraid to try new medicine person he knows. It's 'related' to Golf War Syndrome, I've read...I don't need more issues. When I took Xanax, I worried I'd get addicted. So yeah, I understand completely.

I had to leave work at a half day today because I've been sick, stayed home yesterday, tried to push through today, but was literally shaking by around 11am. I couldn't hold my hand steady. I've never had that symptom before so I hope it's from the sickness and/or dehydration. I feel guilty though. I am worried they are getting annoyed with how much I've had to miss. I just don't know what to do. Balancing a household plus work with POTS takes all I have. I have FMLA but that's soon to run out...so I'm just feeling guilty that I can't keep up right now. And then I'm worried I'll get 'fired' - I'd rather have a 'layoff' than actually be 'fired' but I have no idea what they do in my situation. I've never been written up/talked to about the time I've missed so no 'warnings' are anything. And I've been meeting work deadlines. I just get the feeling coworkers are 'disappointed' or wondering why I am out a lot. I don't look as sick as I feel and I try to be as normal as possible at work. Then I just have a crash, like now. I don't know what point to look into short-term disability (if anyone is familiar with or used this, can you PM me?) Just needed to vent and some advice. Thanks

If the 4-leg one is still a cane, and thus I can walk with it, I'd look into it, I think. I'm tall so I'm not a lightweight. And if it broke on you and you were no where near the weight limit. Well. I'd hate that! I mean, if you're 75 pounds under the weight limit, for example, you think you'd be ok. The weight limit usually UNDERESTIMATES from what I've heard from engineers to avoid lawsuits/issues. I think this may be a life-saver for me. I don't want to miss my summer and fall like I did last year. It's worth a go!

I feel for you. But I thought of a bunch of little pink elephants running about so at least it made me laugh. I grew up with a very neat grandmother. My mother is also very into cleaning. But I have to accept clean enough. It's hard for me. I so understand. Just do what you can and be happy what you accomplish. I keep a list of tasks and like to scratch them off when I do one. Makes me happy! Something done! Laundry seems to get the priority because it must be done. Then cat stuff. Everything else tumbles behind.

I've thought about the wheelchair thread and think I'd like to try a seat cane. I found this one online - anyone familiar with it? http://www.fashionablecanes.com/83209.html I shouldn't worry about looks, I know. I have never been judgmental of disabled people (and helpful when I can). I think everyone has a right to get out and enjoy their lives no matter what it takes. Of course not everyone is like this (but people really shouldn't be like that, you never! know! what's around the corner). How hard is it to get these into say, faire's and events? Should I carry a doctor note saying it's required? Security is so much more stict nowadays. But I think this could open new opportunities for me to get out to flea markets, faire's, antiquing, etc. Stuff I love but have stopped. I want to try again. Sometimes I think the only way to get better is to try and live my life.

My mail-order pharmacy for my insurance no longer carries name-brand Midodinre (ProAmatine). There's not much I can do - they say they aren't carrying it. I'm now stuck with a 90-day supply of the 10mg (I take 10mg in the AM, 5mg at lunch, sometimes 5mg at evening). I still have some 5mg pills (Brand). Is it safe to take the Generic in the morning (10mg pills) and the Brand at lunch/evening (5mg pills)? What should I do about switching from Brand to Generic? Midodrine seems to be sensitive as it deals with regulating our BP, etc. and I'm worried it's going to cause side effects/issues with my BP/symptoms. I do need it in the mornings to make it to work, so this is stressful. I can't 'dump' an expensive 90-day supply. I'm also not thrilled it's made in China. Grrrr. Thanks!

I know our ANS system is crazy and one never knows. But in general I know being overweight can raise BP. But that's in the normal population. I myself want to drop a few pounds and April 1 is my kick-off date. I wish you luck with that and your BP issue. Let us know if it stabilizes. When I'm tired/hot/stressed mine goes higher than normal, but mine usually ranges from 110/70 to 140/95. My EP said to not worrk about anything 140/95 down to 90/60. So I try not to.

I remember occasional really bad (migraines) when I was in grade school. Not often, but a couple stand out. After puberty, I did get migraines. I tried various forms of BC and finally found the steady-dose types like Seasonique work. My migraines have mostly stopped...but now of course I'm changing to an IUD so we'll see! But since I only get a crappy headache (not migraine) during my cycle, I hope it stays that way. I know my Grandpa had migraines, I remember him going to a dark room sleeping them off. I'll have to task my mom, I know she has headaches sometimes.

Silly question and sorry for butting in a bit - but I do get that shakey feeling too and my temp runs 97 a lot - how do you test for blood volume? I want my doctor to do this so I have to go armed and prepared with what I want done so I can push for it!

I think mine was viral. I was healthy enough growing up (asthma/allergies/etc but not fainting and things). I had a severe flu and went downhill after that. I do wonder if a couple good viruses get those of us who are pre-disposed genetically to this stuff. I know my mom has symptoms (she's in her 50s and won't fully admit it - my sister tries to corner her and take her heart rate!). I assume it's like other diseases that have genetic predisposition to be triggered: cancer, heart disease, diabetes, etc. My big question. Those of us who don't seem to have this as a progressive disease...is there really a chance to get better? I'm losing my hope and lately I've not been as 'on' for taking my medicine (cut down Midodrine to 1 to 2 times a day, not taking Mestinon). I really hate depending on drugs. :/ That's just me. But it's just helping the symptoms. I need to feel better to do things so I'll get back on the medicine bandwagon soon, I've just been frustrated. Interesting to see how this bothers a lot of us daily but we seem to just adapt. I guess that's all one can do.

I'm seeing my EP next week so I sent him a note about this. My heart rate has been out of control and wearing me down. I'm on Midodrine, but that's not helping too much. My allergies have been acting badly (which in turn leads to breating/asthma issues if I'm not careful) so not on the Mestinon right now. Is this a 'safer' Beta to take with asthma? My asthma has been under control for years (it's the allergies I have to keep in control)... So any updates you guys have in the next week, post away, and I'll let you know what my EP says next week. Do any of you take this with Midodrine?

Hmmm. Sounds like having a wheelchair could enable longer outings I can't do because after a couple of hours of the heart in the 150s I am exhausted. How does one get a wheelchair in the states? Does insurance cover anything? What about a scooter? I can't answer the poll because there's not a 'It could help, but I don't have one.'

I feel for you....it's stressful to lose a job especially after you qualified for FMLA. My year waiting for qualification was a very long, difficult year. I thought FMLA protected your job for 12/months (60 days leave total)? Have you reached your 60 days? I worry about when that happens and assume I'm done for then...so I'm just curious how FMLA didn't work out if you don't mind sharing as a lot of us are probably on it. Once you take time for yourself, can you consider what you can do that would let you work and not hurt your health? Maybe part-time? Sometimes it feels like there's no solution (and this economy doesn't help) but I believe things can't stay bad forever. Hopefully more part-time will open up down the road. Are you ok on the insurance front? I know that's the biggest worry for everyone I know with a job loss.

Daisy - I was prescribed Zantac specifically for my hives/skin issues and it does help. Not 100%, but helps relieves the worst.

Well. I always had allergies and I have had things give me hives (rare, but a certain blush or something which the dermatologist said was likely the fragrance or oils in it). But with POTS my hives have gone a bit insane. I can get hives eating the same thing one night as I had 3 nights before (I really don't think it's the food...just being either hot or just overactive system). I get hives after every freaking shower but they go away quickly. Same for heat, stress, etc. It's FRUSTRATING to say the least, but my allergist has a hunch these hives have to do with an underlying autoimmune issue. He's seen it before, almost impossible to figure out, and he's seen the issue go away in a year or two on patients as fast as it came. Sound familiar? I'm taking Zyrtec and Zantac. I wonder if your stomach pill is similar to Zantac. I still get hives, but not nearly as bad. They are much more bearable now. I had the blood test for Masto, don't have that (allergist said this one blood test, can't remember what it is right now, shows if you have true Masto). He wasn't familiar with MCAD but is reading papers I left on it. I just know I'm super-sensitive now whatever it is and it seems to go along with the POTS. Having always been allergic to things doesn't help, but the hives are a pain. Let us know if your going back on the medicine works!