iheartcats

10am! So really no time to make it to the Rheumatologist first. I couldn't make it there and then the OB/GYN on time.

I have an appointment in the morning to remove Mirena and go back on the pill for various reasons. I had to have a Lupus Anticoagulant blood test first (you can't be on BCP with it, only Depo or IUD). Well, my results finally came in and my PCP faxed them to my Rheum today. So I've two messages into my Rheum, I explained my urgent situation, and it's 6:30pm so it's not looking like I'll get a call back. I even talked to the office person who knows my situation. I've left another message saying I just have to know if it's positive or negative. If I get the IUD removed and it's positive, insurance will not cover another IUD, I won't be able to be on the pill, it will be a mess. I'm really no good without some hormone regulation with POTS. What can I do? I don't think I can reschedule last minute with the Gyno office, this has been booked for weeks. Advice, please?

My doctor has me book an appointment with a Geneticist because of seeing some...I've even gained weight and have additional loose skin. She wants me to see if it's EDS. I don't THINK I have it? My appointment is in April.

My PCP called and said some of my tests for Sj?gren's Syndrome came back positive, and to make an appointment with my Rheumatologist to get her feedback and why some are positive and some aren't. I always have dry skin and sometimes dry eyes and dry mouth, but just figured it was allergies. Can you have Sj?gren's Syndrome without other autoimmune diseases? Or is it usually combined with something else? And...does it have anything to do with POTS or is this just 'something else' I have to deal with?

I gained 45 pounds in 3 months...after I'd had POTS for a couple years. I know via my records my weight was stable for at least 7 years prior. The only thing I changed was my BCP - the pill to Mirena IUD so I'm finally just going to go back to the pill and remove the IUD. I've read online a lot of women have weight gain from it so I'm hoping it's part of the problem. I also have to be very careful with calories after I get it out. But a lot of women said they ate well and exercised with Mirena and the weight gain kept coming. Silly hormones. There is a side effect of 'weight gain' and my current doctor at least thinks it could be playing a part as even though it's a rare side effect, someone has to have it, right? I also started a Beta Blocker in January, but I think that only added a few pounds (5?) and water weight.

I've been considering an SSRI, too. I just don't know yet. But it's exciting to see yours are working. I just have a gut feeling (I know, I know...not rational)...but there's something telling me they just might help. Does anyone know is there's a generic medicine similar to Cymbalta?

I'm glad it doesn't hurt coming out. That's a huge relief. I had one silent migraine...about 4 years ago...you see these weird little zig zags and things? Since I've only had one I can still do the Estrogen pills (and those were working overall). Everyone tries to say the Mirena doesn't affect hormones systemically. But I think it does for some. I so wish the couple of bad side effects would go away! Then it would be wonderful (it's in there, no worries about birth control, no periods). I hope it regulates for you because it has potential and some people love it. I think my body just doesn't like this particular hormone.

You know. I am afraid of passing out in the parking lot. Or at least having a bad moment (dizzy) from going from sitting in the car to standing up to walking and going down and getting hit. So I think I will just explain that (and the certain days where I can't walk more than X amount without assistance). A seat cane is 'assistance' right? I think I saw cane/walker so that should be OK. I used to have the 140-160 BPM standing up pre-Midodrine + Beta Blocker. I never seem to be at the doctor's office when those wear off and it kicks up to the 'fun' level!

Because I moved to another state, I no longer have my handicap placard. I figured I'd 'tough it out' but...I think I need it. On bad days it's hard for me to get done what I have to do. On good days, I didn't use it and that wouldn't change. How do I bring this up with my PCP? I know he thinks I need to exercise more (and I agree)...but having an awful morning with an appointment and dizzy isn't the best time to be parking far away. I can go on, but you know how it is. I am regretting losing it. What is the best approach to this?

I was on Mirena about a year. I like that I have absolutely no periods! But...I've gained a chunk of weight and am very bloated around the middle. I've done a lot of research online and I even found one 50+ page thread over women gaining a lot of weight on Mirena and even eating healthier/exercising doesn't help. My weight was stable (within a 10 pound range) for about 8 years. A few months after Mirena I'd shot up 45 pounds. My activity level is about the same and I am eating healthier than a year ago. So maybe I can blame 5-10 pounds on a change in activity level or aging or something, but three doctors I've talked to agreed that 45 pounds is a huge spike in a few months. My Gyno office said some women just don't do well with the Mirena so they aren't surprised...the pamphlet says weight gain can be a side effect (I guess your body thinks its pregnant with this? Not sure.). My sister said she turned into an elephant on Depo, and I feel like that on Mirena. I was on Seasonique for years and liked it. It kept my hormones stable (it's a mono-phasic) and I only had four periods a year (which helps my POTS...the less, the better). Now there is a generic Seasonique called Jolessa. I hear it's by the same company, even, so I wonder if it will be bad to try that first and see if it works the same as Seasonique? I am talking about a cost savings of $140 every three months so I'd really love to be able to take the generic. I'm just afraid it might not work as well, even though legally it should! Does anyone know how long I'll take to adjust to a new BCP after an IUD? Is there a chance for a long awful cycle? I've never had an IUD out and I'm afraid it'll hurt like heck, too! It did going in. Thanks for any advice.

My mother has told me "I've had one of those really bad racing heart days again, I'm so exhausted." I wish she'd go to a doctor, but she won't. I wonder...if POTS is triggered by a virus, then why is there such a strong genetic component for a lot of us? Could a virus trigger it if it's genetic...like more susceptible to POTS, get some type of virus, POTS goes wild? I wonder if there's a chance of healing still. I'm so frustrated about this now that I've found it for sure in other family members on the maternal side.

Yeah! Glad you had a good time. You aren't even 'that' much older than your daughter, yet it feels like an eternity, doesn't it? My nephew is 13 and it's like I'm a geezer because I've hit the 30. LOL

From what I understand, this is a more 'short-acting' medicine (someone correct me if I'm wrong). It lasts 3-4 hours. To me, it seems during peak times it will do this to me (when the drug is most potent). I need the 'boost' standing up, especially in the morning. That's when I take my largest dose. I take it, lie down a half hour, then start my day. And Endocrinologist I once saw said POTS patients take it for different reasons than most and I shouldn't worry about supine high blood pressure with it. I've tested it (lying down for a half hour to an hour) and my BP was OK. Also, I was told BP varies so much don't get too worried about a few results. You can take it over time and talk to your doctor about it. If you're feeling better, which I hope, then that's always a good sign!

35! Eep! Try to enjoy yourself as much as possible...it's a once-in-a-lifetime event! You can rest your behind off tomorrow, right? I'm sure it'll be loud, though. 16 year old girls aren't quiet! Have fun!

Years before POTS, my heart got stuck...I was having a quiet day inside, not much (if any) caffeine, nothing out of the normal and was sitting folding laundry. I remember it vividly. I felt it go 'blonk' and then it was stuck. I tried to stay calm and lie down for a minute. Couldn't catch my breath. I called 911 for the first time in my life. My heart was going about 260 BPM and wouldn't slow. The EMT guys looked surprised it was so fast. The ER Doctor had to give me an IV drug to 'reboot' the heart, I guess. After that I saw an EP and did an ablation a few months later. I've never had it again (like that, just the POTS which has got to like 190, but due to exertion and dehydration). I guess mine was SVT, not PSVT which is more dangerous from what I understand? Some kind of extra electrical pathway in there had to be ablated. I did feel like I was going to die. It was so scary. I think this is something you should get checked out just to be on the safe side. I don't want to worry you - mine was out of nowhere and I was OK - it just felt awful! Not something you want to have all the time and that's why I went through with the ablation. Now if it had been with POTS, I'd maybe not have done the ablation. But I didn't have POTS until 2 years after that.

I'll keep this in mind. I might just start with a well-rounded overall vitamin before doing big doses. I wonder if it will help...or if you do need a lot? I'm surprised how much supplements seem to be helping folk, but it's awesome!

I've been considering adding a small multi-vitamine (like Flinstone's) and extra Iron. I had too much B6 on a recent check-up so quit my multi, but I think I need to go back to something. Especially iron, Vitamin D, etc. I am up in the air on vitamin usage, but I know Iron has helped me before as I'm borderline anemia a lot. I read l-methionine isn't found in fruits, veggies, and beans (my main foods). I don't eat much fish at all, and rarely meat and then it is just chicken. No red meat or pork at all. So what does this do exactly and who has tried it? It looks like its over the counter and I know how to run a 'drug interaction check' with my current meds (and can email my doctor). But if it's benign with other meds, I'm tempted to try. Are there side effects one should watch for?

Ericka - I think this does call for a 2nd opinion. My doctor is having me go in and I don't think I have EDS...I was always flexible but less so now that I don't exercise. But that doesn't necessarily mean EDS (I just tried that scale thing, I think I have 4?). Have some stretchy skin spots, but not super stretchy. She still thinks it warrants a verification. You seem to hit all the points, too. So yes, go with your gut on this one. We know how we feel best!

I have a hard time napping unless I'm sick, but if I'm going to learn from anyone, it'd be my cat! How adorable. I'm glad you had a wonderful nap and the picture of cats and sunshine and napping made me happy.

Interesting about the Lyme, Mold, Heavy Metal, etc. connection. We have another thread going on about mold. One never knows. Thanks for posting your plan. Are you in the States? Just curious because Lyme disease is so controversial. My doctor and I talked about it. I had a test for Lyme, but it was negative. I am certain some people have Lyme disease (and I'm glad you have found this out!). I'm glad I finally found a doctor willing to get me tested. It's harder than it should be sometimes! Interesting work up. I've never seen anything like it! I'd love to know what my activity is!

How frustrating! If a meteor needs to fall, maybe it can hit that part of your house when everyone is out of it? LOL But, I do hope they can get it cleaned up. What a lot of mold must've been hiding there! I'm glad you have more energy...and even if it is partially causing your problems...I would assume it'd take time to heal? At least that's what I tell myself. If we do get damaged from something, even additionally, it has to heal up and nerve endings take a while to improve. So keep your faith that this will help you get better!

I'm sorry you didn't get as much as you wished from your appointment. I had an appointment with him, but it was canceled and I couldn't reschedule as I was moving to another state. Would you mind sharing what blood work you had to figure out your type of POTS? Maybe some of us could ask our local PCPs and go from there? I wish I had more of a clue. But...not everyone gets an answer to that, either, and I guess you don't have one, either! What meds are you on? I am on the H1/H2 medicines and they help. I was told it could just be my allergies (and my random hives) make my POTS work. So the allergies are MAKING it worse rather than MCAD. Not sure exactly how, though, but I still take the H1/H2 as it helps.

I wondered if I had MCAD as I have so many allergies/weird responses. I also get random hives. And I've had flushing. I still don't know for sure, but we're leaning to 'no' at this time. I do get flushing on occasion and I think it's more a POTS thing for me. Annoying and hot and uncomfortable, but I do get it less now that I'm on my Beta Blocker (proprananol). And my Beta Blocker has made me BETTER. My heart rate isn't racing like crazy at 170 walking around so I can function more. I hope you find something that works.

I can only sleep happily for seven hours at this point......no idea why. I'm kinda just 'up' then and once I take my meds I can't sleep well. If I'm really sick and have to sleep, I try, but POTS will act up more. I wish I could sleep more sometimes, but I know what you mean. We're so sensitive and it sure is annoying. On the other hand, I've read a lot of studies where sleep varies SO MUCH amongst people anyway. So I try to not overly worry about the number. I hate when I can't sleep and have to function on 4-5 hours. Now that's yucky!

I have POTS and a cousin (maternal side) was just diagnosed. She's in her early 20s. We aren't close (different states growing up and such and she didn't know I had it!) My sister is showing signs (we know it's just not anxiety - I did the poor man tilt on her over the holidays with my heart monitor...sit for a few (HR 80s) stand up for a couple minutes (HR 120+). She said she'd noticed the racing heart, fatigue, etc. Similar to me. My brother also has some symptoms like vertigo and feeling off. I think my mother has had symptoms on and off but ignores them. My mother, sister and I have had sleeping issues for a long time. Wish they could find out what triggers this, especially if it is genetic, so we can get better treatment. I think I'm like Mack Mom's son...on meds probably 60% functional. But not without my meds! Of course there are worse and better days, but taking an average.