iheartcats

I've made my appointment for Mirena. The more I've read about it (and the significantly lower stroke risk - I am on Midodrine and my Gyno worries about BCP and a blood pressure raising medicine) the more I think it's worth a try. My Gyno said the worst case scenario I try to give it a few months to work, if it doesn't, it can come out. But I think since I handle Seasonique ok, this shouldn't throw me off too much. Fingers crossed!

I've got my appointment for Mirena. I really hope it helps like it did for you!

I'm fairly certain I didn't have POTS symptoms when I was younger...I had a decent time in High School gym class, walked a lot (loved walking!) and had a lot of endurance, played kickball like crazy in grade school...worked part-time in High School and still had good grades... So while I had occasional migraines and menstrual issues, that was about it. And some allergies that worsened as I got older and allergy-induced asthma. I got that mostly under control with Zyrtec and seasonal Nasacort. I also used to work in marketing where I had to do long hours at Trade Shows occasionally and was a very busy job...and I held up ok. My EP doesn't think I could've handled the Trade Shows with POTS without a severe crash. Maybe it started to creep up in my mid-20s? I just can't remember. I know things got really noticeable a couple months after I had the worst flu of my life. The day I came down with that flu (and that flu came on over a 2-hour period, I am not exaggerating. At nine I was fine, at ten a little woozy, at noon feeling horrible horrible horrible). On the way home from work with that flu I saw a guy get hit by a car and fly through the air and had to call 911. I sounded so bad and upset they just got my number and told me not to stay as they were on their way and I saw someone going to help him. Wouldn't want to leave someone alone like that. So I was sick plus traumatized. I still worry that had something to do with setting off my POTS.

Mine are screwy like this too. My HR gets even higher. Dragging around laundry? 170s! But it's a short time and I'm still alive. I won't advise anyone on this...but I guess at this point I know my limits and what I can push on. :/

Thank you so much for looking this up - I've been watching the page excitedly. I take my biggest dose in the AM of Midodrine (10MG) and have been trying to remember to take my BP at least once in the AM during the first hour of taking it (since 3-4 hours after taking Midodrine I've heard it's mostly out of the system). My BP comes in at what it usually does with it...120/80 to 135/90. My EP said not to worry about spikes of anything 140/95 or lower and I've not reached that. So the good news is it's theorteical, and I've not experienced anything out of the ordinary at least when I've taken it recently. The problem is you don't know when BP is spiking (no real symptoms, hidden issue) so I'll try to take it more the next few days. I'm on 75MG twice a day. I may talk to my doctor about taking 150mg once at NIGHT since I only take Midodrine between 7am-5pm. If I took Zantac at night (say 8pm when I take Zyrtec) that may lessen the chance of interaction?

My EP is more concerned with me keeping POTS under control and taking my Midodrine for BP/Heart and Zantac for hives/allergies than the minor interaction. I'm going to my PCP soon and was wondering what, exactly, this means and if there's a blood test I can get or something to make sure I'm not getting too much of the Midodrine? This interaction doesn't make a lot of sense to me...it's not as clear as some interactions. ranitidine and midodrine (Minor Drug-Drug) Theoretically, the coadministration with midodrine may result in decreased clearance of drugs that are primarily eliminated by active tubular secretion such as metformin, cimetidine, ranitidine, procainamide, flecainide, quinidine, and triamterene. The proposed mechanism is competitive inhibition of renal excretion by desglymidodrine, the active metabolite of midodrine. However, clinical data are lacking and no supportive experimental evidence exists. Patients receiving midodrine in combination with drugs that undergo active tubular secretion should be monitored for excessive effects of one or both drugs.

I'm still getting some hives from stress and heat (showers) and a few flare-ups here and there even with Zyrtec and Zantac. Granted, I've been on Zantac one day so maybe that's not enough time for it to really kick in. I do have allergies, but they'd rarely caused hives before POTS. Now I get the hives frequently, even from non-allergenic causes (Stress/Emotional Situations and Heat/Hot Water/Showers). Is this something underlying with the immune system, thus POTS? I can't wait until I'm able to try allergy shots to see if they help, but even my allergist doesn't think they'll help the heat/stress hives as thsee are really non-allergenic sources, which I don't understand. Thanks for any help...this is distressing!

Nice. So I get hives inside and out. Well, at least I know what that is now.

This is such an annoying issue because I've always had allergies and been on Claritin, Allegra, or Zyrtec for about 8 years. If one stops working well, I switch. I also take Nasacort for about 7 months of the year (end of March to end of October). My POTS was diagnosed in January 08, and a couple months after that I started to get more hives. I've seen my allergist and it's not Mastocytosis (how do you spell this)? He did the main blood test for this just in case. He's not familiar with MCAD (I left him some paperwork and see him in April), but he did tell me to begin Zantac with my Zyrtec (which, actually, I will start this evening). I've got hives occasionally in life, which people with bad allergies do, I guess...but mine are now random and after every shower and when I am hot or stressed. My allergist has seen these flare-ups come on out of nowhere for people, last up to a few years, and leave. That sounds very much like what POTS can do, no? Now. I saw another one mention this...I also occasional get mucosy stools but told this can be IBS. Years ago I had IBS, then it improved. Now it's rare, but I still get these stools sometimes. That can be allergy related? I've read on the board Grubb says controlling allergies is integral to POTS, so that's why I'll stick with my allergy meds. I also want to do shots (and my allergist is willing to do it even if I am on a Beta Blocker in the future). If we can get through the shots, he thinks it'll help me significantly. So I hope I can manage these. I really hope there is a chance POTS + worsening allergy symptoms will improve. But I still think my POTS and allergies have somewhat of a relation. Isn't it just horribly frustrating? Has everyone done that urine sample thing? I have an appt. with my PCP next week and want to ask for the 'bucket' to save for a flare-up. What do I ask for, exactly, and will it tell us something (ie, if it's positive)?

I too wonder if it's the combination of a lot of arm/overhead movement + smell. Did it calm down after a couple of hours? When I want my hair colored, I have to pay for the salon now, unfortunately. I used to do a pretty decent job myself, but the strain and smell is too much. I think the salon has better ventilation and I am sitting so it's not so bad.

Thanks everyone for getting back to me! I had myself checked for anemia and was borderline/low again...so I've started taking Flinstones Vitamins with Iron (I don't have to swallow those). I've no idea if it helps, but I always seem to be borderline anemia. I don't eat red meat/pork/etc. I used to not eat any (fowl) but now eat chicken for protein sometimes. I believe I had mono in college. My lab partner in biology got it...her mom called me to let me know since we had close contact. I was on the couch feeling dead over the holiday break for two weeks. I assumed it was mono, but knew there wasn't much I could do. What is the test I should get for this exactly? I'll go to my PCP to discuss. My grandmother was diagnosed with Fibro a few years ago, so don't know if that's something that runs in the family, but I've not been diagnosed and don't think I have many of the symptoms for it...? I actually want to try Cymbalta, but my EP wants me to wait and see Grubb first, and that appointment was rescheduled for a couple months out due his having to cancel March appointments. The pain is getting bothersome some days (**** days are very bad)....so would like to see if Cymbalta helps. Did it help you, Ernie, with pain management? Advil doesn't do much. Only for headaches. Not for the harrowing body aches.

I tried various pills and like OvCon (I think that was it) but it was discontinued when a generic came out. The generic was awful for me so I switched to Seasonique. It have my cycles every quarter now, which helps the POTS symptoms. The worst side effect for on on these are yucky zits around my cycle, but I suppose I could have this with or without the pill! I am currently looking into Mirean (an IUD) that only provides hormones locally, but systemic. I'm afraid I may get my hormonal migraines back on this, but I also don't like daily the pill with Midodrine (worry about my blood pressure). So I'm considering the IUD option now, but have been on Seasonique for a couple of years with minor issues.

In the last week or so, I've noticed more chronic body aches/pains. I've had similar with the flu and the occasional on and off pain, but this is more chronic. My shoulders have shooting pains, my arms are sore, my muscles hurt, etc. I don't have the flu/cold, either. And I'm a bit more fatigued than 'normal.' I've looked this up, and get pointed a lot to Chronic Fatigue Syndrome and Fibro. I've only been diagnosed with POTS. I will bring this up with my EP next month, but does anyone know what I'm talking about? Any tips on managing it?

Well look at that article! I get hives after every.freaking.shower. (But not in rain). I get hives from stress (have some now because I'm very tired today at work and have a deadline this afternoon, so I get hives, itch, and get more hives). And spicy foods! I'll bring this article to my allergist next visit. This really sums up what I'm dealing with (and it ***** so badly sitting here with visible hives @ work...they are all over my neck area.). Hope they go away quickly today. Thanks again for this. It's nice to see all my weird symptoms summarized. I guess I've been in hypersensitivity mode. I forgot to start Zantac! I'll start it tonight (75/twice day) and let you guys know if it helps at all. Zyrtec is better than Allegra or Claritin so far, too.

You can develop allergies at anytime, whether or not you have any other conditions so yes, you could have new allergies. As for random hives, my allergist says it's something he sees, but can't explain, either. They are annoying, itchy, etc. but the ones I get don't cause further symptoms so I just try to deal. You should go see an allergist. I take Zyrtec and was told I could add Zantac if it the hives get worse by my allergist.

The makeup has continued and I'll start the Zantac! Silly, annoying, frustrating hives. I'm glad I'm not the only one who gets 'em from being 'upset.' Isn't it just weird how our bodies can trigger hives from emotions! I wish I could channel my emotions to cure my POTS!

I'm trying to get in with the other ANS Doc to cover myself, especially since it's likely Grubb will be pushed back. Grubb sounds wonderful, but there has to be some others who can help us...he can only see so many people, I understand! Thanks all.

I was putting on makeup this evening (a set of stuff I always use) and noticed hives on my chest. Now I have had hives from makeup, but those were always where I applied the makeup and lasted for days. The ones I got on my chest were the random ones I occasionally get that go away quickly. Mind you, I always get hives after a shower and sometimes in hot weather. I saw my allergist for my random hives (and tested negative for dangerous food allergies). He told me he's seen these come on people and then go away down the road - no idea what brought them on and no idea why they left - although he expects some autoimmune issue underlying it. I am now on Zyrtec and can take Zantac if the hives worsen. I am starting Mestinon tomorrow so want to wait a week or two for Zantac (hate starting two new things at once, as I am sensitive to meds). The ONLY thing I did 'different' today was eat a Creme de Menthe Altoid. Now I'm scared to eat another and see if the hives pop up. Should I try one tomorrow to see to make SURE that wasn't it? there are no allergen warnings on it and barely any ingredients. so I am doubtful. It's warming up so I have noticed my NORMAL allergens flaring (nose/eyes/etc). Could THIS contribute to hives? I also can test the few makeup products, but I'm 95% sure those weren't it as those have always been localized. And we're talking powder shadow/pencils. Thanks, guys. I see the allergist again next month and want to give him all the info I can. I can still breath normally, etc. I think I do get PANICKY when I get random hives, though. Which doesn't help! Edit: (I am putting on minimal makeup one thing at a time, and all is well. So appears to be one of the other factors...thank goodness because I need my makeup!)

Hello, I may need to reschedule my late-March appointment with Grubb due to a variety of things that have popped up out of my control. Also, he's canceled most March appointments so mine is still on, but of course they can't promise anything. So. Can anyone tell me what a one-day visit with Grubb does? Do they actually do testing on the spot? There's another ANS specialist nearer to where I am who I chatted with and is willing to see me so I wonder if that's worth a try? Grubb's office does not have a schedule yet for upcoming months, but they are understanding and I could get rescheduled but it'll be a few months out. I have myself all worried by not seeing Grubb (I've been waiting 10 months) I'll never get better. But I suppose it's no miracle cure like I hope it'd be. I know I'm interested in Cymbalta...and my local EP is familiar with it and POTS...so I assume I could convince him to give that a try. Any advice is helping. I'm very stressed about having to reschedule Grubb (be it myself having to do it or them). I want to get better and don't want to ruin my chances by putting this off.

I try not to worry as much after talking to people on the boards over the last year. I am 80-100 sitting (average), 100-120 on a good day moving about, 110-135 on a normal day moving about, 140 and up on a bad day moving about. In the AM walking to work, etc., it can fly to 160. Stairs and laundry can make it hit 180+. As long as those really high numbers are brief/caused from my activity, I try to just push through. But that's me. I don't want to get any more deconditioned than I am, personally, so I am willing to push myself through my chores, etc. Sometimes I pay for this and have to slow down a bit. It's hard because I'm working as much as I can right now and trying to balance cleaning the house/family/etc with that. It does wipe me out. Maybe you'll be surprised at what you can do. Just go with what feels right for you.

I do too. With the chest band/strap and if you wear a bra, it's not very noticeable. Sometimes you have to adjust it (slips) but it's not too bad. I wear mine about 10-12 hours a day so from my calculation I think I have to buy a new strap every 7-10 months. My strap batteries aren't replaceable.

I think I want to try these...compression hose are just too hard to get on. And I think my pooling isn't in my calves, it's higher. Would my calves me very red/show pooling? LOL about the sizing. I know people who are size 8-10 who are thin, but not much muscle definition and hence need some shaping in form fitting dresses, etc. Must just be this line. Are you tall, by chance? I'm tall and hoping they hit at the right spot.

? How do i begin to find a PCP that knows what to do w/ POTS? Mine is just clueless & makes me feel like a hypochondriac. ---I have a good PCP who's interested in learning about POTS. It's something new and she's a truly caring doctor - you can tell she wants to help her patients. I think you just have to try a few to find one. That's what I had to do, if they don't work with you...or it's not a great relationship...go to a new one. It was hard the first couple of times, but then I decided it's my life and my choice and I have to do what's right for me. ? Electrolytes: a nutritionist has recommended I skip all the electrolyte drinks (she thinks they're largely marketing ploys) and take trace minerals. You buy it as a liquid and put into whatever you're drinking throughout the day. Has anyone tried this? ---No. I probably should. But G2 is easy to drink and my EP thinks it's ok. ? Has anyone tried flower essences - like Bach's? ---Nope. ? Does it take you longer to get over being sick (even a little cold) than most? ---Yes. And my symptoms are worse during an illness. A little cold I'd barely notice before is now prominent because of my POTS symptoms. ? Are digestive issues common? How do you deal w/ them? I've had IBS since age 18 but have horrible side effects from the meds, so try to manage it on my own. ---Mine were worse years before POTS. I'm lucky on this regard. ? Other than over-doing the activities, what are common triggers? Are there foods that are good to avoid w/ this regard? ---I can't pinpoint anything personally. Some people can't tolerate MSG. ? My sleep is always off kilter, which I read is common. 2 Simply Sleep & hot milk usually works, but are there natural methods that you all find helpful? ---I've always had sleep issues, even as a kid. With POTS they can be horrible. I can sleep well a few nights, then not a few nights, etc. I take Ambien on occasion. I don't love taking it...but a couple days of no sleep + having to work = horrid for POTS. I guess you just have to find something that works. When I work, I can't nap, so I have to sleep at night.

That is very true. Most people I know don't get it - it's even worse with co-workers as I just don't share much with them and they are baffled by me not looking ill. I have no clue how to assess fitness. I know the ballpark of what my heart should not exceed working out/Pots Tachy Flare, but to maintain a 'good level' for working out (say 140-160?) I kinda have to stand and walk around and move a bit. Not really productive. I've been too afraid to push it and see if things balance out into a mild to moderate workout, at least not until I see Grubb. I'll bring this question up to Grubb...as I really, really need to work on getting in (somewhat) shape. I'd personally feel better. And hopefully it'd be helpful to some POTS symptoms.

What a very common (and annoying thing) for us this has turned out to be! The fluids did help, and I think the more I over do it (and I do over do it, even per my doctor but I tell him I'm still kicking) the worse the flare so I am going to try to pay more attention to these spells to try to avoid the horrible crashes. All one can do is try, I guess. Thanks everyone. I'm thankful in a way it's not 'abnormal' for Dysautonomia/POTS. Makes me feel a bit better.