iheartcats

I was finally diagnosed in January 2008 with POTS, but recently ordered my 24-hour heart monitor results from 2005. I need to take this to my PCP and see if it's abnormal...but it says my heart rate was more than 100 for 20% of the day. I know I wasn't exercising with it on, and that seems 'high' so I wonder if I've had symptoms way before diagnosis. I really didn't start to feel 'bad' until Spring of 2007. Anyway - is it reasonable to ask to wear a 24-hour one now to compare? I feel this would give me more insight (and my PCP/EP, too)...I guess I can push for this. I'd like to know.

I do take a whole pill in the AM - 10MG so that will be ok for generic then. Glad to hear I shouldn't expect anything completely off the wall! I'm supposed to take 5MG in the afternoon and as needed in the evening. Not sure what to do if I can't cut it. I would have to pay out of pocket for the 5MG and I think it's far too much. Will have to see if there's a chance I can cut the generic. I'll try to go back on the regular when I am out of generic. Will make due until then and try it first on the weekend. Thank you for making me feel better.

I have a heart monitor I usually wear. My rate is often 75-ish lying down. 80s sitting. And will fly to 130+ standing. Once it calms down I am happy when it's 100-120 up and moving about. Bad days it's 120-150. Stairs make it crazy. 170, but it's just for the short period of time. So I'd get the test - the doctors can take the jump in nervousness from the visit in consideration, I assume.

Your threat made me laugh. Congrats on just being old! I'm looking forward to trying Cymbalta if Grubb agrees...seems to help a chunk of folk, but I don't see him for a while yet. But that's the only drug I've really read up on lately. As for headaches...Lyrica was approved for CFS in the States. You keep hearing how POTS and CFS have overlapping symptoms so maybe it's worth a try. You can read up on the side effects, etc first.

I'm so upset. I have a 90-day supply of the generic and there doesn't seem much I can do. My doctor did do DAW/No-Generic but my mail pharmacy specifically said it wasn't made any longer. They could not get it. I'm waiting on a call from Shire for some 'proof' - I need something to argue with them and the insurance company. In the meantime I am literally AFRAID to take the generic (especially after reading about some bad generics online)...This medicine is what allows me to go to work in the morning. What is the new one doesn't work? What if it causes my BP to fly off the chart? I know where I stand with the other. I'm almost in tears over this. It's a bad situation for me. The generic 90-day supply is very expensive (I think around $550) and the brand is around $1300 so I can't 'dump' the generic. There is no way. I just don't know what to do. This is SO frustrating.

I just want to say good luck to you. I've never used the medicine they will be giving you - but just be sure they are well aware of your symptoms. I know how hard that is - people just don't 'get it' - it's not a common problem to have. Take care of yourself!

Hi, Flop! That made a lot of sense. My EP tries to explain things - I should have him hire you to draw up this chart and description. LOL Yes, I had an SVT. I can tell the difference of the beat...my SVT stuff just felt wrong. And was very fast, instantly, not even standing. It really felt different. My POTS beat, while it can be fast and annoying, isn't the same. So it makes more sense now how my EP is fairly sure they aren't interconnected. I guess I am just unlucky.

This is a really interesting question. As I did a detailed log of everything I ate for over three months while I was on a rotation diet and then a statistical analysis on the spreadsheet to see if there was any correlation with particular foods and ensuing "flares". But I was never able to pin point a culpret. Some days it seemed like "corn" wold trigger a reaction. Or avocado. Or cheese. But then other days I could eat a quesidilla with guacamole and not have a problem at all. Looking back it certainly could have been blood sugar issues, since that is a problem I learned later that I was having at that time. However, there is another possible cause I came across while reading about "brain toxins". For people who are sensitive to MSG there is a whole list of foods that contain high levels of "free glutamates". In some cases depending on how sensitive you are ... it may not be how much free glutamate a particular food has in it ... but how many free glutamates are in the meal as a whole, or even how many you consumed that day. So in my case, the chedder cheese may have been fine if all of the other foods I had eaten that day were relatively low in free glutamates. But if I was loaded up on these MSG triggers already then any one of the high glutamate foods could have sent me over the edge. Now, I don't even know if these "brain toxins" are real or not. But it does make sense if you apply the same thought/logic to histamine producing foods. If you are already at your threshold than any food that contains histamine producing reactions might set you over the edge on one day but on another day (when you may by chance be lower on histamine overall in your body) the same food would not produce any reaction. This is of course for people who have food "sensitivities" and not out right allergies. If you are truly allergic to peanuts or shell fish this doesn't apply. But for those of us who seem to have reactions when we eat ... but have not been able to pin point the specific allergen, it could be that it is about the overal "load" rather than the individual item. TOTAL SPECULATION ON MY PART! ~EM I wonder about this - I sometimes get hives (on my chest usually) eating. I can also get them after showers/stress/etc. I can feel the burning start and there they go, but primarily only on my chest. I can eat the same thing 4 times a week and only have this one meal. I was concerned about food allergies at one point - but I could never pinpoint it to anything either. I haven't had a hot beverage in ages, but wonder if that would do it, too... I never took the details like you did (you are awesome for doing that) but I don't think it's just one food for me either. I eat eggs, milk, soy, etc. without any trouble usually. But tonight some Mac & Cheese and Carrots? Some hives. I do avoid nuts since I had a rash with Cashews once just because it's a pretty bad allergy to have...otherwise I try not to let it get to me because often times the hives are gone within an hour or less. I am getting an allergy test (skin) Monday. I have to go off my Allegra Friday - Monday (which will be annoying, but at least it's winter. Lessens the allergies outside). I'll post if I find out anything I don't know I'm allergic to. I know I am allergic to dust mites, pollen, some molds, etc. Rather standard fair. I'm glad I'm not the only one who hives/flushes randomly.

Well I am not sure what to do - my mail-in pharmacy gave me misinformation. If I don't use them, my copays are much more costly and I'm not working full time the next couple of months so am doing what I can to save. Anyway, they've already sent the generic. I can't order a new batch until March. How should I handle this? Maybe I'll contact the brand-name company, get info, and fax my pharmacy. I hope the generic works well enough...will it be safe to take a 10mg Generic in the AM and save my 10mg Brand Name to cut into '5s' - I wonder what the harm is in mixing (I usually take 10mg in the AM, 5mg at lunch, 5mg at evening as necessary). At least I know I can cut the 10mg Brand Name. The pharmacy said they were discontinued, but I wonder if my insurance is just not covering Brand Name and they got confused? If that happened, can I argue with the insurance that Generic doesn't work (if they don't)? I think you have to at least try Generic first to do this, from what I've heard. Thanks!

This morning I placed my lower palm right down on a wall tack (the longer ones, not the flat ones). I pulled it out, washed it, and it bleed a bit/hurt (of course). I had a Tetanus shot about 5 years ago...is this really worthy of a booster? It wasn't a tack on the floor, it was lying on my desk, and wasn't that deep...maybe an 1/8 of an inch? Or a 1/6? Hard to tell. Anyway. Since vaccines play havoc on us I wonder what I should do...I hear the Tetanus lasts 5-10 years unless you have a more severe puncture wound/cut. This doesn't look severe and it wasn't an object lying outside (doesn't Tetanus thrive in the soil)? What a silly, annoying thing to happen! Ugh!

I have intermittent FMLA too (use for flare-ups, doctor visits, testing, recovery, etc). It's so hard. I have a busy month of work coming up and that scares me - I just take it a day at a time. I see Grubb in March and am trying my best to hold on until then. I am hoping to find medicines/treatment that really work for me with him. I see someone mentioned compression hose. I really must look into getting a pair. If it can really help, it's worth a try. Can you extend the FMLA out a bit, and decide what you want to do after your visit? Part-time work would be ideal for me - or something like 3 days home/2 days in office, but boy is that impossible to find in this economy! I know how frustrating it is - workplaces just aren't being nearly as flexible in this economy. Let us know how things go and what you decide.

I was wondering this too. Today I had a few hives and I had eaten or done nothing. Nothing! I guess I get them from heat/hot water/etc sometimes. But regarding other stuff - I wonder if one day a food bothers me, the next day it's fine. I fortunately mostly just get hives/upset stomach. Maybe I'm just sensitive. It's annoying. But I haven't been diagnosed with MCAD yet.

I'm guessing in Minnesota you can have studs (very snowy, northern state). I found this online: *Minnesota permits residents of other states that allow studded tires to operate in Minnesota under time restrictions and stud length restrictions. But I couldn't find exact dates...but winter runs through March up north!

I can't wait to see Grubb. I will talk with him about this - I don't think it can hurt to try. The worst is it won't work/cause side effects and I stop. Not like that hasn't happened before!

Thank you for the encouragement. I too think it's good to get through it...I just have to do it and at least I only have to stop Allegra for the 3 days. I didn't think about lying down, so will tell them. And will mention the reactions/need of an Epi. I have an Epi so will take it just in case. Where I am being tested is right across the street from a big hospital so that's a comfort.

Hey guys - getting everything together for my tests with the PCP this week (urine + serum + possibly RAST). Now. One thing I'm worried about is going off my allergy medicine (Allegra) for 3 days to have the skin biopsy. Even if I can tolerate those three days, could I have an issue with the skin biopsy since I'm so sensitive? Or should I just get it over with and tell the allergist? At least right now I'm just on Allegra...I want to add Zantac next week...and possibly Singular in the future (maybe will wait until Spring when my symptoms are always horrible to try Singular and give the Zantac/Allegra time to work, we'll see). But - any thoughts on the skin test? Should I get it done now when I only have the Allegra to go off of for 3 days? I've never had a full blown can't breath/pass out Ana. attack, but I have had severe flushing/hives/diarrhea. Thanks!

I tried to PM you, but you're full! I had a question related to allergies/MCAD (which I'm checking into) so guess I'll throw it here if you don't mind. Have you ever used a Beta Blocker? My EP wants me on one as my tachy is so bad, but I don't know if my allergy meds would still work. If you aren't on any, how do you keep your heart rate under control? Mine is crazy lately.

I just noticed with both had SVTs diagnosed in 04, Ablations in 05, and POTS diagnosis in early 08. I found this thread today because I had a very minor SVT - about 10 seconds but scared the crap out of me because it has been years since I had one. It feels very different than POTS. With POTS, when it gets high from stairs/exercise/whatever (like the 180s) it's fast, but more of an exercise-induced fast feeling. The SVT feels entirely different. MY EP said my ablation didn't have anything to do with POTS since it happened long after (I probably started having real symptoms about two years after). Did you ever figure anything out? How are your SVT episodes? I hope they are anomalies for us!

I think kitties make everything better. Abbi looks fab. The spotted kids are beautiful. And that bundle? Now THAT is a bouquet I'd like to get. Man, I hope the ablation didn't cause anything with POTS. The EP says it's too long after, so I hope...

Thank you so much (and what a pretty cat in your photo! I wish I could have multiple cats!). I think it's hard on us because you always hear how bad things can go with the heart - and we put up with issues on a daily basis and are told they are normal and not to worry too much, etc. I'm telling myself it was probably an OI thing...I know for normal healthy folk you can have a skipped beat, fluttering, fast rate for a bit, etc. It's just when you have had prior bad experiences just the littlest thing sets you off and you hope it doesn't lead to anything!

I had an ablation about 4 years ago. I did not have POTS at the time...and my HR got stuck one day at 250+ and had to be stopped in the ER. It was fast and steady and scary. Just was 'stuck.' EP was pretty sure it was an electrical pathway issue so I had an ablation and didn't have this issue again. But a couple years later I came down with POTS, finally diagnosed in Jan. 08. I think I'd had it since March/April 07, though. Anyway, today just sitting I had the weird SVT rate for like 5 seconds (super fast steady fluttering beats) and it stopped. I hope my pathway isn't back - I hope it was an anomaly - but I'm kinda freaked out. I know it's not really advisable to get an ablation with POTS. My EP says I had my ablation before POTS and it probably isn't connected in anyway, but now I won't have that option. Has anyone had an issue like this?

Well, I am just relieved to know it's common enough with what we have. It's annoying, though. I sometimes get worried about my birth control pill, but if I had to have monthly cycles, I'd be unable to work.

I seem to feel worse in cold winters. You think it'd be the heat - on hot 90+ days I don't feel great, but I've noticed winters when it gets below 30 (and especially below 10), I get very bad symptoms (tachy, dizziness, fatigue, etc). I wonder if it has something to do with my body trying to stay warm AND regulate. It's just too much for it. In the warmer temps (50s - 89 or so) my body doesn't feel like it has to fight as much to stay at a certain temperature. I don't know what else would explain why I'm worse in the winter. I thought I'd be better in the winter, too. Nope. Just have to stay really hydrated in the summer to improve blood flow, but that doesn't even help in the cold, cold days.

My BP fluctuates significantly. It can read from 90s/60s to 130s/90s. I am on Midodrine, which raises it in the morning and my EP said he wasn't concerned with readings 140/95 or below as I need to increase my blood volume in the AM. It's usually 120s/80s after my 10MG + a bit of coffee in the morning (I've done experiments with and w/out coffee in the AM and I am better with it). Today it was 135/95 then it was 129/89 before I left. Not great, but not horrible. I do feel dizzy, nauseous, etc. more than usual today. But I am much more tachy today, too (got to 160 walking to work - horrid!) and is 90s sitting. Usually 130s walking in AM/80s sitting. I've researched online and symptoms of high BP are vague...most people don't notice anything. So I'm wondering if my symptoms are just overall POTS related today since I'm having such a flare-up. I've been in 130s/90s before and felt 'ok' - nothing too abnormal especially since the Midodrine wears off and it goes down. And it's been 3+ hours since I took it, so I think it is probably minimal in my system right now. Thanks!

The State send me a the placard so I can move it between vehicles (in case I'm a passenger). This is fine, not a big deal. Now I have to find out who the building owner is at work and ask them why they don't have disability parking (and ask the city what are the requirements for a business). On a side note - if I move to another state, can I have my local doctor fill out the paperwork? I may still be seeing him once or twice a year, anyway, for my treatment. Thanks!