iheartcats

I knew it was classified as rare...but I always wonder about how under-diagnosed it is. We've all heard stories "well for years I had some dizziness and racing heart" but the person ignored/tolerated/blamed it on anxiety/etc. And the doctors not believing people. A family member of mine - I have a hunch they have something but they kept testing them for anxiety and stuck them on Lexapro. And said they probably just had 'vertigo.' How many people run into a similar experience? And I know you just get used to fatigue and the weird symptoms to a point. It's your normal. If we had a faerie grant us a week of 'decent normal health' we'd probably be like whoa, you are supposed to feel like this? As I ignore my weird pains and such, at least this is what I think!

As others have mentioned, allergies can make mine worse. I'm on rear-round Zyrtec and Zantac. I take Flonase steroid nasal spray during the worst allergy season which is now March - October for me. I see less of the waxing/waning POTS symptoms by keeping my allergies under control.

Don't give up. Just have hope they'll find something so at least you know (and possibly can treat it). Right now my Rheum is trying to narrow down what I have. Have you had a positive ANA test? I'm being looked at for Lupus and Sjogren's Syndrome (which can cause dry mouth/eyes and you have dry eyes it sounds like)? Do you have a follow-up with your Rheum to go through the results and see what's next? How controlled is your POTS right now? I wish you well and hope they figure out what is going on...but it's not always easy!

Janey - Isn't it stressful to realize you must get back to work..and know you are just possibly in good enough POTS-health to do it (yet still be much more exhausted than normal folk). I'm telling myself I need to get working because at least I'm not at my worst. Maybe I'll get better, maybe not, but there's no predicting the future so take advantage while I can. I'm so happy your letter worked for you - I used to be in journalism and blog a bit for free for clips on my own time. Just to keep my skills somewhat rolling. Marketing/PR is a bit easier than outright journalism and POTS. PR less so, as there is a lot of interaction/events. Kits - That is all wonderful advice. I didn't realize the accommodation question...the job I am going for now is no physical labor. So I can answer 'yes' from what I have of the description. And I will be honest in the hours I can reasonably put in. How should I verify there is no travel, though? I was on IFMLA at my last job and it worked wonderfully. I was able to go to my doctors appointments and a flu I caught didn't cause me to use all my sick time in one go. I didn't abuse it, but it did allow me to be less stressed and know it was there if I needed it. In fact, when I was doing poorly I even reduced my schedule and work was fine with it - it was a win-win situation due to work load/my health. Sometimes things work out! It just takes 12 months and I know I should not worry myself, but that always nags (what if I get a bad flu, etc?). I was told that if health does take a nose dive, be honest and say you need to resign or work less hours if it is really to that point rather than miss too much work and be let go. If this good advice in your experience? Thank you so much! And I will look into PRN work. I have to research where to find that in my area.

I'm glad you don't have it, though! That's something I hope I don't have and wouldn't wish on anyone. So try to rejoice in that you don't have something very hard to deal with. I know you want answers, as we all do, but if they can rule out something like this, that's good news! (I believe you are referring to:) "Wegener's granulomatosis is a form of vasculitis that affects the lungs, kidneys and other organs. Due to its end-organ damage, it can be a serious disease that requires long-term immunosuppression."

I am job hunting now and hope I can handle it. I've talked to my doctors and, while I'd prefer part-time, I need more money than that right now and there aren't many part-time jobs now. I think when the economy improves, more people will leave part-time for full-time, but now I'm seeing very few. So I already now working eats a lot of my energy. I'm sad I have to give up other things, but I know I've no big choice right now. My last position I did not have to travel....I knew I couldn't handle it. The economy was better then and I was able to get a job where I knew there was no travel. Many places list if there is travel, so I don't go after those. But at what point do I bring up if there is any required travel? And that I don't really consider travel a perk and would rather 'hold down the fort' and can't really handle work travel? Also, my doctors don't want me doing the 50-60 hours a week work that many people get dumped on them. I don't, and I just can't. My last job knew I worked the 9-5 schedule and if I really had something pressing I'd work on it at home in the evening where I can be comfortable. I can't work late hours anymore. My field is online marketing, so most of my work is accessible anywhere with an Internet connection and computer. My other needs are occasional medical visits. I know when you are offered a job, you can tell them I need these days off (unpaid or whatever) as I already have appointments/plans that can't be changed. Usually places are OK with that. But what about other visits? You don't get protected for a year with FMLA, but I know there is the ADA too. I don't want to take a job and burn out and have to leave because my needs weren't discussed up front. I want to be reasonable...I know I can 'do my work' but this economy makes it harder, I think, if you are a little 'abnormal' (I don't know how to phrase it, but I think you guys know what I mean). I have a good track record, references, etc. I just need places to be a little flexible so I can stay healthy as I can. Thanks in advance, guys!

I switched from the pill to Mirena last year. I don't like Mirena much. I've talked to my OB/GYN and it's just not for some women. I think I'll prefer to go back on the pill. I have never been told the pill could cause dysautonomia. I know the pill works for some and not for others....but for me, having more periods = worse POTS. Less periods = less flare ups. Did you read something about this? Just curious!

I know heavy periods make mine WORSE, so I try to have as few as possible (those 4 times a year BCP, like Seasonique, work well for me). Good luck!

Propranolol allows me to function. I do take it with Midodrine (as my BP can run low to normal and this mix helps me keep it in a normal range). You do have to go off meds for testing sometimes, which is a struggle. Maybe you can make sure if you are going off meds to get tested, you can get a bunch of testing at once?

Mine used to vary more widely before my mix of a Beta Blocker and Midodrine. Weird combo (even I said this when I went on it...wait, one lowers HR/BP, the other raises BP)? But somehow. It's helping. Definitely talk to your doctor. There might be something to help you - it's awful to have those spells that affect for days.

I would definitely see someone about it. I think you have enough symptoms to warrant a doctor visit about EDS!

I'm so glad you have some symptoms somewhat under control! It's something! Who'd think Nitro of all things. I'm still surprised about what I read/find out about POTS. Symptoms can vary so much! As for Mestinon. I still don't know if it helps. I've fortunately not had chest pain like you describe and hope I never do. But it sounds like it was causing some if it?

Thanks for posting this. I was wondering about Vandy. But I have my diagnosis. And saw another specialist here and it's about the same thing. I guess..I guess I was expecting more. Maybe a miracle. Sigh.

Wow I just read through this thread as best I could. I have pooling (per the specialist I saw) but my hands get so cold. People comment on that! It's one reason we moved from a frigid climate! But, a Beta Blocker still helps me (Inderal/Propranonol)...should it? But it does. I've never tried Nitro and I only get some minor chest pain. Thankful - your chest pain sounds awful. Is it fairly new with the POTS or always since you've had it?

I would guess it would effect everyone differently. Some are probably more sensitive than others.

When I was diagnosed, I'd never even heard of POTS. My doctor said there were support groups online so go Google and find one and read more about it. I just couldn't believe something was called POTS and I had it. And here I am.

And EDS is in animals, too. I had no idea. I wish I could have him: http://www.thelanaproject.com/adoptable-pe...s-syndrome.html It would be good to know if you had EDS so it can be treated. So go!

dsdmom - It is interesting your cat showed a reaction. too. We're all 'mammals' so this type of thing can't be healthy! And like I said before - what if it could be just a bad luck trigger: environmental + trauma (virus, surgeries, etc) and it was just the right combination to send some of us over the edge? Very upsetting to think about!

I'm supposed to see a specialist in genetics for EDS, too! I have to get it approved. Do you know what happens during an appointment? I used to be really flexible...but not so much now. I mean I can easily touch my toes and floor and all that with no exercise at all in a couple years. But my skin is stretchy, the POTS doctor thinks. I'd say you SHOULD go because you are SO FLEXIBLE. It's worth it in your case. Mine? I'm still torn. Let us know what you find out!

Kristen - What do you think about POTS plus mold? My POTS came on during mold exposure. It sits in the back of my mind and I wonder and hope, if it was partially that, if I can heal now that I'm out of that environment. Anyone who does have POTS and mold should do whatever they can to clean it out. Definitely. The stuff I've read on these links is surprising. I didn't know mold was that bad...and our mold was disgusting. If it was coming through on the wall I just have a feeling there was a LOT behind that wall. I don't even want to think about it! My cat is healed. After tests/x-rays/etc. Healed. No more asthma. And he didn't improve until we moved! I just don't find that a coincidence. And my cat is a very close companion of mine and I adore him so I pay attention. It breaks my heart mold in his sleeping area was harming him. When I moved, I threw out my mattress and couch (both were very old). I also have new curtains. I am glad I decided to get rid of those as spores can hang around. Good luck, everyone. I wish I would have had the mold tested, but I didn't own the place and it's costly. But it was not a normal 'food/kitchen' mold. It was black and nasty.

Very interesting topic as I always wondered about my mold exposure and POTS! I lived in a building that had some water/leaking issues. I didn't know this when I moved in. We had a very moldy closet (we didn't really use) because the AC was in there. They 'cleaned' it and painted it once, it came back, and finally we moved into an upper floor unit to avoid the leaking closet. I was probably around that mold for 4 years. Then there was a huge flood and the basement of the building flooded (I didn't spend much time down there, of course). I was very glad I was no longer on the first floor. A few months after the flood we discovered a wall behind some stuff we had stored in an extra room was full of dark, icky mold. My cat liked to hide in there and he had been having literal asthma attacks for months. We even had him X-Rayed and checked out for his respiratory problem that came out of nowhere! We fortunately were able to move a few months later. About a month or so after moving, my cat stopped having his awful asthma attack (they were so upsetting to me and him I am sure). I am doing a bit better. Not greatly, but we'll see how I am at the one year mark. My POTS came on in the middle of this...in 2007. I also had a bad virus in 2007 so it could've been a combination, who knows. But I don't think the mold situation was healthy! My cat being 100% cured of awful asthma attacks really says something to me, though.

Mack's Mom: Stress. Yes. I've actually broken out in all over hives from stress. But it's been up pretty high lately! So could be adding to the pot. The extra Benadryl seemed to calm things down last night so it was worth the drowsiness! FireWatcher: You know. It was at a weird time. Say 4pm. So it was probably old. At least made in the morning. How does this affect histamines? I don't think I'm very familiar with this. I have to eat more fish so do tell (diet change). I hate itchy hot hives. Pink: I was just tired from the antihistamines. I'm glad other people mix these - I feel like an antihistaimine fiend. LOL But if you need it, you need it. They still don't think I have a MCAD but something autoimmune. :/ I just wish I had an answer. Again, thank you everyone. It's nice I have some place to get answers!

Hello, all, After finally feeling better after my viral infection (antibiotics were finished yesterday) I got bad hives tonight while eating out, they went away, and now are back a few hours later. I just had a quarter of a chicken pot pie (yes my gluten-free fell through this month - I was sick and couldn't keep up). I know it's not an out-of-nowhere-eating-wheat thing because I've had wheat in chicken noodle soup, macaroni, etc recently. Not good, I know, but not tonight's problem. I've tested negative to nuts (but had hives immediately after cashews before!) so I asked, and no nuts in the pot pie. I had nothing else. I've taken my Zyrtec for the day (about an hour ago). But these are so itchy. I was told by a former allergist Benadryl can be used for breakthrough allergic reactions, but I don't know if this is an allergic reaction! (If you look up Benadryl with Zyrtec many say it's dangerous on the Web, but I told it just makes you really drowsy)? But I can't been up itching all night. I'm so frustrated. The hives are coming and going. If a Benadryl works (I'll take one before bed, I guess, so I'm not itching/burning all night)....does that mean allergy and NOT autoimmune? I'm so confused.

I first had to pee all.the.time. before I was diagnosed with POTS. Even had to get an ultrasound of my bladder (no kids, young, doctor was baffled as everything looked fine). I'm Irish enough I expect Rosacea (I turn pink/hive up on occasion) but since POTS it happens a lot more. And the hives are fairly random. Can't be pinpointed to one food or anything. Now my ANA is coming back really high. I have to have MORE autoimmune blood tests next week. So far, though, my ANA is looking like Lupus. I hope not...but symptoms + ANA tests are matching up. Now...does Lupus CAUSE POTS? I would love to know. My PCP even would like to know what is causing what, too. I also have positive reactions to gluten (Celiac Disease). I've fallen off the wagon again (sigh) but try to avoid it. It's not super high, but enough I shouldn't eat any gluten and I'm really trying to get better at that. For some reason it's the hardest thing for me! Edited: Please let us know what your neuro says. I don't have a neuro out here...I see a rheum now. Would love to know what a neuro thinks of all this over activity.

Firewatcher - Misery LOVES company, doesn't it? I seem to be tolerating this antibiotic (fingers crossed) and have a couple more days, but my doctor said they stay around a few days after that. I am finally.starting.to.feel.better. Finally! I hope you are better by Friday! I am starting Nasacort tomorrow for a week. I've taken it for allergies, but never for a bacterial infection. At least I know it's quite benign for me so I'll have a go. Don't you hate the face pain? I swear I felt/heard mine making a 'creaking' noise. Agh!