iheartcats

Wish I could read the whole thing - how'd they find out it caused POTS? I still suspect that a virus really triggered mine. Would love to know for sure. :/

Hey Pam! Yeah it's hard as it only comes in Generic. I'm trying to figure out the 'old' Generic I used to be on. It's weird...it seems like California has different Generics than Illinois. And when we have no 'brand' to turn to it's difficult. It's the one that really works for me!

Unfortunately, my Beta Blocker has been switched on me. I tried my mail pharmacy and my local pharmacy and both now have Teva-brand (and even Walgreens carries Teva here). I know Teva is a big generic manufacturer and was hoping this would be OK. I have a 90-day supply. My heart rate is faster today and I'm a bit more POTSY. I was doing pretty well on the other generic. Now, I don't know if it's coincidence (feeling a bit dehydrated today, haven't eaten much today, and am stressed more than usual). I don't know if my body has to 'adjust' to this new generic, though? Could I have to change dosage? That'd suck because I'm supposed to take the lowest amount possible. It's Propranolol, non-timed release (I prefer the standard) and only generic is made of standard Propranolol. Inderal XL is the 'timed-release' and for some timed drugs just don't work as well for me 90% of the time. I really, really hate generics have to change. I've finally found 2 tolerable Midodrine generics. Propranolol is such a widely used drug you'd think the generics would be OK...that's why I'm praying for coincidence! Or at least a short adjustment period.

I was told you can lose the effect of the Birth Control Pill if you vomit or have diarrhea. At least I was told that and to be careful with food poisoning, flu, etc. when I was on it (such as if you lose more than '3' days worth you're no longer protected from pregnancy that month). I don't know how much truth there is behind that medically, but it's worth looking into. It'd be awful if you're losing a good chunk of your meds that way.

I take mine two to three times a day (depending on when I get up and all that), but it's a low dose. I take Propranonol and really like it. I guess if this one isn't working great for you, you can talk to your doctor to adjust the dose? And you always can try a different one there are so many available? It does take a bit to adjust to one, I noticed, but mine has REALLY helped me.

Yes! Positive! And I was rather upset. LOL I'm going off Monday...or at least starting. I hear it takes a while to really get the hang of it. It was supposed to be THIS week but I got the flu and couldn't shop, only wanted to eat toast, etc. Har. But yeah. Positive. If I do improve, I'll have to have future tests. I will let you know how the bloat goes after a couple weeks. Let me know about your tests. I feel so much better about the positions...that has happened to me before AT WORK. I prayed no one would come into the toilet and see me. I'd never be able to explain. Never. But thought I'd die unless I could, well, you get the picture.

I do! I have a feeling it's from Wheat Intolerance (possible Celiac Disease). It's annoying and looks odd. I hate the tummy bloating. Maybe get a blood test for Celiac Disease just in case? Mine came back positive. Now I'm going off Gluten.

I have a somewhat constant mild fatigue that gets moderate if I can't sleep enough...and then it's very annoying. It's not the 'tiredness' - I know what that is - it's more of a body fatigue and that is really the worst. Memory - mine used to be stellar. Now it's alright. I'm glad it wasn't alright to begin with...then it'd be just meh. LOL

It feels like a sinus infection! I've had these - the runny nose, post-nasal drip, forehead headache. Blerg. I'm going to see my PCP tomorrow but just got off antibiotics. I hope I don't need more. :X But. A sinus infection over pneumonia? I'll take it. Goodness, it would be worse, right?

Thank you! I see my PCP later this week for a follow-up (and I'm hoping they can 'check my lungs' - is that possible? I'm so nervous about the post-viral stuff). I know people who've had horrible complications from the H1N1 strain, so I'm glad your family made it through. I am coughing a little, but nothing horrible. I figured the extra POTS stuff was due to the flu. It just is no fun! I hope I can get the H1N1 Shot, they are still unavailable here.

You can usually appeal to the financial aid office, and back up with medical records if need be. You have to explain what happened, the grade wasn't his fault (partying, not studying, etc). Usually if it's the only 'bad' thing on the record, you can work it out. Be friendly! Always helps with those offices!

Sorry to hear you were diagnosed! Glad you find this site. I, too, haven't heard of O2 for POTS (without Pulmonary Diseases, anyway). I had a Pulmonary function test last year and it was fine. But yet, I'm out of O2 walking up hills/stairs and probably like many others here just deal or learn to compensate. Some days are worse than others. I do like O2. I told my hubby that'd be a bar treat for me - an Oxygen Bar! That's! a night out! (Wish they were still trendy, haven't seen any in years and years). Good luck to you, at least you have an diagnosis now.

I think the Tamiflu helped...my doctor said he'd only been seeing H1N1 so he prescribed it over the phone since my temp was going up and I felt achy plus sore throat. The flu symptoms were much less than other flu-types I've had but this could've been because of Tamiflu. Or I could have got lucky for once? Anyway, I'm just really tired and POTSY now. More dizziness and tachy. I've been sleeping in so taking one less dose of Midodrine/Beta Blockers a day, but I don't think that's it. I've slept in before while well and skipped my AM dose and was OK. My tachy usually corresponds to being up. So it's probably just the tail end of recovery. I do have more of a headache/sinus feelings. Hope that goes away. I hate how that can linger after a cold or flu! My spouse asked if I was well/recovered. It's so hard to tell with POTS but guess I have to start venturing back into a normal routine again! Its been days since a fever, I'm taking my final Tamiflu, and no sore throat/abnormal-not-POTS body aches. So I guess I'll start slow tomorrow. The laundry pile is scary. I still wonder if I should get an H1N1 shot just in CASE it was a different strain. And I assume most of you feel POTS symptoms get a bit worse after a cold/flu? I'm sure I got more deconditioned, which is always a bad thing. I did move around as much as I could to get the blood flowing, but not a lot.

Mrs B - Thank you so much! At least you guys 'get it.' Maxine - I had an ECHO in January, but never and Ultrasound. I wonder, if I'm diagnosed, if I can get that approved? I hope so. I'd rather know if I have that risk! Sorry to hear yours is quite severe and took so long to get diagnosed. Do you feel 'limber?' Tachy - Things do run in the family, I guess. I remember a 'double-jointed' cousin. Weird things on one side only. The side I know well enough, at least. I'm glad it's not the side I don't know well at all! You should be tested. I'd never even thought about it until now. I guess it IS better to know.

Good. Mine is ready now so waiting on the husband to bring it home. Just hate I have to take it and I'm already on antibiotics. Well, POTS will just be nuts for a week!

Thank you, MightyMouse!

Thank you. It makes me feel better at least someone is listening and out there. My cat and I are sitting here and he knows I'm upset! He cuddled on his own accord!

I'm sorry this is somewhat off-topic, but I can't find any info online with POTS/Tamiflu and what I should expect. I apologize. I am very afraid right now.

Hello everyone - I've already had a stressful week and now they think I have H1N1...I wanted the shot, it never came! I woke up today feeling horrible with an awful sore throat and my fever keeps going up. I feel so uncomfortable and have a fever AND chills at the same time. Plus more than usual body aches. I'm already on antibiotics for nasal impetigo (yuck, I know) so I'm so worried - a bacterial and a viral infection? I could cry. I'm scared. I wish my family was close by right now. What can I do? Is Tamiflu safe? What are the 'worst' side effects? I guess I'd rather risk those than the full-on flu, even if it helps just a bit to lessen the impact. I had my regular flu shot, so it's a strong possibility it's H1N1. Oh I didn't need this.

My Specialist at Stanford - this is the one on her recommended list to me, too. I am already on it, but it's a very popular one for POTS. I've had a lot of luck with it!

I'm with Maxine - I never get below 60bpm on 20mg of propranolol 3 times a day...I think I've been in the 50s before laying down, but that's only on rare occasions and I felt normal. I'd worry if it got below 50, personally, as I know I am not 'healthy fit' right now and if I was feeling bad. If I get upset, stressed, etc. it does fly up like yours, even on Beta Blockers! Ahh, the joys of Dysautonomia. I hope you can find a BB fix that works for you - let us know!

Hello all! I finally saw the POTS Specialist at Stanford and it went well. My medicine mix, fluid loading, and extra salt are all what she recommends. Florinef is something to consider in the future. I also need to try (and I know this) to exercise and get my muscles back in shape. I do wish I could afford and had room for a recumbent bike, but I'll have to make do without. But...she's concerned I have Ehlers-Danlos. I'd never heard much about it. When I read about it online last night, it can be somewhat mild to severe up to 'bursting aortas, etc.' I used to be more flexible before I became to ill to exercise...I remember being one of the most flexible in High School Gym. Also...I remember my 'knee' popping out when about 4 and I couldn't walk. Doctor said I was 'growing too fast.' And my skin is somewhat elastic. So. I'm waiting to hear from Stanford to set up my next appointment with the specialist department. Anyone know how much having EDS would 'change my life?' How will I be tested? I'm so tired of having new things wrong with me.

I want this for Christmas! LOL No kidding! I do!

I suppose I'll be partially testing this with my Celiac Disease (no gluten starting next Monday). I thought I had post-viral POTS...but maybe a virus triggered the whole she-bang, who knows. If I feel 50% better w/out the Celiac Disease causing autoimmune issues I'll be happy.

Ahhh! Thank you. I'll order from Amazon, then.