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I wonder if mine could do these - we'll see...! It can be so hard to communicate with labs. Wonder what exactly is enough of a flare-up for this? I get mild hives sometimes out of no where, I'm also hived out after a shower, hmm...Sometimes I can eat things just fine and other times same things hive me out, but they usually subside quickly. Usually. Not the Cashew incident! Well, let's keep everyone informed. Looking forward in a way to my skin test to see what I am truly allergic too. Am tempted to ask for an in-office cashew eating test (the way things go it could've been a one-time reaction...but I was told to avoid all nuts in the meantime and to not have a Cashew Party...!).

Mack's Mom: Thanks for all your information. That's very helpful for us wondering about this! It seems to be the hot-topic lately. I have an appointment with my PCP later this week and will be discussing that 24-hour urine test (just as well give it a go) and will ask for a ranitidine prescription (I know it's OTC, but cheaper to go through insurance for me usually). Since I've taken it and Nexium at different times, I'm comfortable they won't cause any issues, and best case will help. Now. I'm on Allegra 180 which has been pretty decent. Should I switch to Zyrtec? The one thing I was told with Zyrtec is to take it in the evening (I take Allegra in the AM) because Zyrtec can make you a bit drowsy. I'm sure I can switch my prescription, or buy Zyrtec OTC (but I have a huge backlog of Allegra because I get 90-day supplies). Is Zyrtec just a better choice for MCAD? Also I did an experiment today. I always notice if I 'itch' my chest I turn bright red. So I ran my fingernail over my chest today and it turned bright red along that strip area I scratched and went away about 30 minutes later. For people with MCAD - how do you know if something is going to bother you one day and not the next? What if peanuts are fine one day and hives the next? I seem to be on and off in what bothers me. The one thing I'm bummed about is I can't take my allergy medicine at the end of next week because of my upcoming allergy test (need at least 72 hours off meds). I think I'll be rather Potsy so I have to stay very hydrated, etc. But I want to get a good read on the skin test and go from there. Any clue what causes MCAD? I've always been rather allergic to things with sensitive skin, allergies, easy hives (can't even get pedicures, get hives so easily), eczema (I have Elidel cream for when it's horrid), etc. Oh - and does anyone with MCAD take Mestinon? I'm starting that next week and wondered if it will react to anything. Forgot to add: I was diagnosed with interstitial cystitis a few years back. It's better now but I went through a lot with it (antibiotics and more antibiotics and nothing helped). Finally saw a Urologist and the only thing he could guess was interstitial cystitis because everything else was fine. It's somewhat better now (flare-ups on occasion), but this makes me wonder. I just read at Mayo it could be allergy related an no one mentioned that during my tests/issues with it.

Thank you very much. I really need to be able to cut mine in two - so I will definitely not be able to use the crumbly ones. If they give me the crumbly ones...I'll have to ask my doctor for a script for 5mgs, I guess, and argue with the insurance that I need two doses and can't cut the crumblies in two. :/

I occassionaly get annoying flushing (hive like/burning). They come on at different times - when I'm warm, stressed, eating, etc. I wondered if it was food allergy - but it really doesn't matter what I am eating (sometimes if it's 'hot' it's worse)...and then they go away. Showering always gives me the red splotches. I have bad allergies, anyway, and am on Allegra. I wonder what's the worst that could happen if I asked my doctor to try me on Zantac? I used to take Nexium years ago for stomach issues...is it a fairly neutral drug to try that doesn't mess with other things? I have my allergy skin test in about 2 weeks, and have to go off Allegra for that (boo!)... But the flushing is bizarre. I've always wondered why it happens. And I'm fair so I look like a tomato.

Geez. Now I'm so nervous about this because my current Proamatine is working...and I really need it to make it to work in the morning. I'm useless without it. The mail-order company I have to use for my insurance is sending me the 90-day supply of the generic 10mg. I wonder why various generics don't work, or some do. I currently take 10mg in the AM & then 5mg once or twice a day as needed. Maybe I'll just have to take them more often (is it a strength issue)? I was guaranteed by the mail pharmacy (and the woman checked with the pharmacist for me) that the active ingredient has to be the exact same thing legally per the FDA Is that true? My symptoms vary day by day, as all of us do, so it'll be kinda hard to tell how much is the generic Midodrine and how much is weather/illness/whatever else is going on that day with OI.

My doctors wanted me on the real version of ProAmatine (generic Midodrine) which I've been taking. My pharmacy just informed me that it is no longer available - the manufacturer has ceased production. I went ahead and took the generic Midodrine order, but they said to let my doctors know since they specifically asked for non-generic. This is frustrating because you hear how much better the name brand is, doctor wants me to use it, now I have to try something 'different' and hope it helps me just the same. Why do drug companies do this? Once a generic comes out they give up on making the quality product!

I'll pay more attention. I've noticed they can be 'close' - so have to be more careful. It's bad when I get dehydrated, too.

I think I've grown used to mine over the last couple of months...I'm only slightly red in spots and I have to find a happy medium, tight enough to stay up ok, but not tight enough to annoy. Sometimes it slips off and is annoying, though. I either use water to make it 'catch' my HR or water + some gel stuff I bought at the sports store. Hope yours starts to work for you.

I think I have a sinus infection/cold and my symptoms are much worse. I understand where you are coming from - any type of cold/virus/infections makes my POTS worse. Also - I am having a hard time chewing/biting down. My left side of my jaw HURTS and has a lot of pressure. I'm hoping it improves - I can't take any type of decongestant. Did you find anything that helps? I haven't been to the doctor so am not on antibiotics. I'm feeling awful - but don't want to take antibiotics if I don't have to. I guess I'll see if it improves over the weekend.

This is fantastic! I'm so happy when people post good news. Congrats, Ernie, and I hope 2009 is a great year for you.

I definitely will...I have to do the wine test, too, then, don't i?

I am going to talk to my doctor about this too - sounds like a simple enough test, I guess...! And I really, really need to take a Beta Blocker because I've been SOO tachy lately. But want to be safe about it.

Thanks for everyone's help. Well, I was supposed to start Mestinon this week - but I'm afraid of starting new medicines. This is an issue I have (fear of new medications)....I wish it wasn't so bad, but it's just me. I want to start it during some time off I have later this month. So it is partially my fault I'm not on it yet! But, I know my doctor will let me try a Beta Blocker a few weeks after the Mestinon...but one thing we're hesitant about is I have bad allergies and Beta Blockers can hurt allergy medicines, right? At least that's what I got in my research. For now I'm doing what I can and getting by...and will start my Mestinon, then possibly a Beta Blocker (I have an allergy test later this month to check for serious food allergies as I used to have reactions to Cashews and Almonds). I also have to look into city code about the handicap spot (once I have my plates, especially) and will see what I can do. And yes, I do think my symptoms have been worse overall. I've been pushing myself too hard, have some personal-life issues, the economy (as most people), and winter is hard on me. I think even worse than summer. So all in all it's a mixture, I think. I appreciate everyone's help and will update when I get further info!

I'm definitely talking to Grubb about Cymbalta - from what I hear I think it might be one worth trying. Is it something you have to wean off of if it doesn't work? And is it safe to take with Mestinon and a Beta Blocker?

I want to get tested for "Other patients with POTS have episodic flushing and increased urinary levels of methylhistamine, a primary urinary metabolite of histamine. These patients are thought to have a coexisting mast cell activation disorder that is associated with shortness of breath, headache, lightheadedness, diarrhea, nausea, and vomiting." before I go on a Beta Blocker, just i case... But it seems so hard to tell what one you have! I was sure I was post-viral, but now my younger brother and sister are having symptoms. Yet the study said they've only seen the NET-gene situation in one family...but other POTS/Dysautonomia run in families, right? Also, how do you get tested for: norepinephrine

I'm going to have to look into the legality of them providing a handicap spot. I'm almost certain if it's not a legal requirement, they will not. I can do this in the meantime while I'm waiting on my plates. I wish we had a service like you're talking about (drop off/pick up). I think that would be an advantage of working and living in the city rather than the burbs. Do Beta Blockers really knock down your rate? By how much? How long did you take to notice a difference? If it's something that could really help (and boy am I feeling horrible) maybe I can try them after a couple weeks on Mestinon instead of a month. I thought this move would be bad, but it's much worse than I anticipated.

My doctor faxed me approval for a handicap spot - I've sent that in to the state and am waiting. I hear it takes 2-4 weeks (ahhhh). I called the city and non-timed meter spots (spots that are all day rather than 2 or 4 hour) can be used by handicap plates. I'll need to see if the tad bit closer spots are on non-timed meters which would be helpful once the weather improves. Can't use them in the snow (car gets covered). The city said the street spots around my building are zoned. It's two-hour for anyone, nothing they can do about that. They are really streets for resident-only parking. I'm really concerned about what my options are now...Once I get the handicap plates should I approach HR about a handicap spot at our building? The reason I don't see this happening is 1. we aren't open to the public and 2. the expense and 3. what if someone else wants/can use the spot (I wouldn't know)...it'd be 'first come first serve.' I'm really hitting the wall, but at least the handicap plate is in process. A building located in a residential area isn't the easiest for a parking solution.

Here's the hurdles: 1. We don't get in at the same time, only a handful of people use that lot, etc. so there's no one who can drop me off. Plus there are no co-workers who'd even do this there, I am not close to any of them, but at this point it isn't even strategically possible. 2. I cannot go on a Beta Blocker until mid-February. I'm supposed to use Mestinon for a month, which I'm starting next week, and see how that helps. Doctor wants to do things slowly and I should've started Mestinon by now but have had other things I wanted to deal with first. 3. I did talk with HR. All they could offer me was the covered lot. Otherwise it's random street parking with meters/limited parking (and all that is outside and it's too hard for me to scrape my car in the winter when it's exposed). They have limited lot spots (first come first serve)...the rest is find your own/pay meters/move it after time limits/etc. They helped me secure a spot in the covered lot, but it was all they could offer. The few spots at the building are offered in a lotto for those who don't have covered lot parking and I couldn't risk losing the drawing. So at this point I don't know what to do...maybe if the Mestinon works/doesn't work (whatever the doctor is looking for)...then I can try a Beta Blocker by early February. This is causing so much stress in my life right now, and it's really wearing me out personally. There's some additional things (why I am afraid to push my luck with HR) so if anyone wants me to PM them let me know. Thanks everyone.

Unfortunately, my workplace moved and has no parking. I have to walk a few blocks now from a garage and it's very hard...of course no one else has an issue at work so I'm dealing on my own! My heart runs in the 140s to 150s during the walk - I do all my normal stuff beforehand: Get up slow, take Midodrine, drink, and a bit of Latte that usually helps. Mornings are just bad. In the evening it can be in the 120s/130s on the walk but that's more 'normal and tolerable' for me. I'm hoping I just start getting accustomed to it - but at this point I am so exhausted by 1 or 2pm from this new extended morning walk. And freezing winter isn't helping...but it won't be nicer out for a couple more months. Any ideas for me...or is there hope I'll adapt and it will at least get tolerable? This illness is so frustrating. No one at work even understands why I'm so down about the move and this extra huge stress of getting to and from my car.

Some days I'm feeling awful and have to get out for something, and the tags will help. Or like Flop said, I'd have to use all my 'extra energy' just getting across the lot. And sometimes I get a bad spell and need to get back to the car - the daunting walk through a lot is not good in that situation. There are may reasons the tags are needed, but it is so frustrating the looks/comments people give when they don't think you need it. I'll happily trade my illness for being healthy - I'll park clear at the far end, thank you very much, and you can have my tag!

I don't really have a lot of pain - on occasion but nothing I can't deal with, fortunately. I think I'll see how the Mestinon goes, and just compile all this info for my Grubb visit in couple months. I'll be on Midodrine, Mestinon, Salt, & Fluids by his visit for POTS. I can work with what I have for a couple months, I think. And I'm going to try to give Mestinon a good month to kick in and work. I know it can cause stomach upset for a few weeks in some people, but those can subside. Thanks for everyone's input. It's interesting to see how the medication varies so much for the 'same disease' - shows that POTS/OI/Dys sure likes to work at different levels for different causes.

I recently applied for handicap plates, per my doctor, and am hoping it goes smoothly. I sent in all required paperwork plus the fees last weekend. Unfortunately, I may be moving to another state sometime in 2009 - has anyone moved to another state and had handicap plates? Will I just need to take the new state's form filled out by my doctor to the DMV when I register? Also - regarding ADA - is there a special card or anything? I never know exactly what ADA is - I know it protects people with disabilities - but is it something you have to be qualified for? The reason I'm asking is when I go in to apply for things like handicap plates I get 'looks' - I can show them my Heart Rate Monitor (just standing there and it's 130 or more sometimes!). One nice lady did say it's 'no one's business, between myself and my doctor' which I appreciated. But as you all know, when you don't look sick and you're getting permanent disability plates, some people can give you the eye. Thanks!

I hate taking medicines, but have learned sometimes you have to... :/ I'm a bad patient about trying new medicines! I went through about 4 inhalers and finally found Nasacort AQ. Many others did not work for my allergies, but this did (I only take it during my worst allergy times, usually Spring and Fall). This may not work for you, but it's the one I really found useful.

My POTS is really frustrating me. I've had it a year now with no real improvement. My only improvement is I know I have a disease and am not an insane hypochondriac! I'm currently on the salt/fluid diet and take Midodrine 1-3 times daily. My doctor is having me start Mestinon this month, but I know it's hit or miss. I'm giving it a try, though. Is anyone on Cymbalta? I've read it could be helpful and is used for Fibro. I also came across this; SNRIs are a class of medications that are thought to relieve symptoms by affecting the levels of serotonin and norepinephrine in the brain and in the spinal cord. By reducing the absorption of serotonin and norepinephrine into cells, SNRIs increase the levels of these two substances. For anyone who has used this, what other meds are you on and did you have any side effects? I am very hesitant about medication, always have been, so having to keep taking new medicines to treat myself is very stressful. But after a year of suffering I'm starting to be more willing to try things. I also feel I'm slightly depressed from POTS - just having a chronic disease and the havoc it's threw into my daily life, losing friends, not having energy to do what I want, etc. is really getting me down. I don't know if Cymbalta is worth bringing up with my PCP. Thanks for listening/any help!

I'm bumping this up as I need a vent. I've been diagnosed with POTS for one year now (fun anniversary!) and am somehow still hanging on. I dread going to work on days I feel unwell, and have intermittent FMLA but only take for appointments/as needed/flare-ups/etc. as I don't get paid for the days I miss. There are just some days I don't think I am going to make it through, but I somehow manage. Not the best of scenarios, and I do fear what happens if I just can't do it anymore. I try to block that thought off until I have to deal with it. Mornings are the worst and getting ready and the first hour or two of work seem to be the most difficult. If I could teleport, that would be easier! The walk from the garage to the office is a pain - most people think nothing of a couple blocks, but to us? That's a daily trial. One 'positive' I have is a morning latte helps, and it's my daily treat because you have to have something to push you through the bad times. The next couple of months will be difficult because of the frigid weather and I just cannot wait until March. I'm taking it one day at a time. Working with POTS is so hard...especially when no one knows how ill you really are.