Frugalmama

Can I ask a strange question? . I've read that MCAS can be exacerbated by exercise and standing - is that correct? If so, that would totally explain the POTS symptoms, wouldn't it? Also, there's a new info document from a seminar last summer that was just released by the Canadian Masto Society, and in it there is mention that folks tend to just get worse as they get older unless treatment is given. Did you all find a progression in symtoms as well, or did you just head directly into the anaphylaxis? (sorry for hijacking, I just thought this is all related

This is definitely the hardest . Nothing else can even come close, as it didn't permeate my life to the same extent. Yes, having kids is hard (I had a 3.5 year old and a 20 month old when my youngest was born), but I would absolutely LOVE to get to parent them without POTS hanging over my head. I think this illness is so challenging because when I'm having acute symptoms (which happens every day), it makes me into a different person. Unless I'm lying down, I'm forgetful, rushed, impatient, and feel like I'm going to pass out - it is so hard to do anything when you're just trying to remain upright. It's all about perspective, though. Most folks can't imagine what this is like because they've never experienced anything even close, and I'm happy for them that they haven't . But yes, I often have to pray through my bad attitude when I hear someone complain of something like a sprained ankle - but for that person, in that moment, it's a lot to deal with. On the plus side, think of the empathy we are gaining for other people

I also find the cold so frustrating - I just can't warm up unassisted. I live in Winnipeg, and although thankfully our winter has been very mild thus far, -40C is not unusual. Brrr.... . My biggest issue is in falling asleep - if I'm cold, I simply can't fall asleep. And just burrowing under blankets doesn't help, so I use the microwaveable packs and put them on my feet every time I head to bed. It has seriously changed my life! I also have a warm bath every night right before I get into bed - I can't sleep if I don't. I have an add on question - I also have the opposite problem that as soon as I start to warm up, I become overheated unless something can cool me down. To remedy this in bed, I sleep with an ice pack under my pillow. But how do you all deal with this during the day? I think I have about a 3 degree temperature range that I can maintain, otherwise I have a drastic swing to hot or cold. Ah, the life of a POTSy

I've had three kids, all before I was technically diagnosed, and the last two were while having very acute symptoms. All three of my kids went to term (one was 15 days late!), and are extraordinarily healthy I was not on any meds, and my bp stayed very low throughout my pregnancies (never above 90/60). I did go for weekly IVs for the last two months of my last pregnancy, and it kept me functioning - it didn't do a ton for the tachycardia, but it did help with the fatigue, brain fog, etc. Sorry I can't be more of a help, but my docs are very unhelpful so I'm not grtting much treatement One thing that just came to mind - could it be that some of the symptoms you are experiencing are from pregnancy itself? I know you're the only one can feel the symptoms, so you'd know if it's different from normal But extreme nausea, vomiting, dizziness, etc, are super common during the first trimester. And congratulations! Being a mom is life-changing and amazing

So Nina, it's basically saying that they don't believe that MCS is a valid diagnosis, right? But what if those people really have MCAD or the like? I haven't been diagnosed with either, although we're exploring MCAD, and I can guarantee that things like perfumes, scented lotions, room fresheners, foods, heat, etc. are causing some crazy symptoms on my end of things

I was just at the Autonomic Clinic in Hamilton last week (I'm from Winnipeg), altough my experience there was not stellar (I have hopes it will get better once the doctor on charge of the clinic becomes involved). From my understanding from them, they get most of the POTSies from western Canada.

Hi folks - I hope everyone had a wonderful Christmas! Last week I headed out-of-province to a recommended Autonomic Clinic in Ontario. I was told I was going to see Dr. Guzman, and had heard great things about him, only to find out when I got there that I actually was to be seen by another fellow. His english was definitely not so good, and he had his eyes closed almost the whole time I spoke with him...very bizarre. The doctor who runs the clinic is supposed to go over everything in a few weeks and contact my GP. So after the TTT and some other medicinal-based tests, he said that my results and history did indicate POTS (which I already knew). He then said that the treatment he'd recommend was a beta blocker and midodrine. The strange thing is, I had just told him that we did that already. I literally had no change in symptoms with Midodrine (at 10mg, 3x daily) although I did have the "tingling" from it, and I was on Propranolol, which dropped my HR by about 10 bpm, but it did not decrease my symptoms at all (I just started experience pre-syncopal symptoms at a lower HR threshold). He then told me I should find a different beta blocker. He also said he couldn't figure out why I'd use Propranolol for POTS since it was never prescribed for that. Which is super strange to me since I see that all time listed as an option, and see that many folks here take it. So my question is - isn't the whole idea of a beta blocker to lower your HR? If that didn't work to reduce my symptoms at all, would another beta blocker have a different effect? And if I saw absolutely no effect from Midodrine at that dosage (which I was told by my pharmacist was the highest), is there a chance that combined with a different beta blocker it would do more? The last thing that didn't quite jive is that I was told that the fatigue I was experiencing was far more than they see in normal POTS patients so I should look more into Chronic Fatigue Syndrome. I experience a great deal of fatigue and weakness from being upright (standing 5+ minutes, sitting 1 hour+), but it doesn't seem to be out of proportion from what everyone else here experiences. Any thoughts on that? So confused...I went to a place where they were supposed to be "experts" and only got info that contradicts everything I thought I knew!! Thanks for any help, folks! \

Very interesting question! I actually started wondering this, too, as I had an awful episode on a flight on Monday. I was feeling pretty good and went to sleep (as I always do when I travel since I have terrible motion sickness), and I woke up to a pulse of 130+ and extreme nausea and tremulousness. So I'm curious as to whether the reaction was so bad because I wasn't awake to catch it earlier, if the severity had to do with sleeping sitting up and something not balancing out properly.

I was always embarassed, too, about having to sit on the floor...until my sweet husband pointed out that actually fainting and cracking my head open would be a lot more embarassing! . On Monday I was on a short flight to another province to see a specialist, and had a full blown POTSy episode. Unfortunately it was a completely full flight, so I ended up lying on the floor in front of our seats. Now THAT'S embarassing! At least we were able to talk them down from calling the paramedics to meet us once the plane landed.

I haven't done it yet, but I'm planning on getting a bracelet with my diagnosis and something to the effect of "Please see info card in wallet", and then I can put info in my wallet since it changes frequently

One other thing I forgot to mention - depending on your symptoms, it may be difficult to adopt or foster. I'm pretty sure that in the state I'm currently in, there's no way we'd pass the medical requirement. Just something to consider I totally agree with the others that mentioned that their kids bring them joy! There's the perfect moments when my kids pile into bed and snuggle me and sing me songs - it's one of the few moments that I can completely forget that I'm sick, and that in and of itself is a beautiful gift

Have you happened to take your BP on the arm that you're not lying on? The BP there will be significantly lower - in the hospital, they always had to use the arm I was laying on....

I sort-of fall into the category you're looking for . Although I didn't realize it at the time, I have been having major POTS symtpoms for as far back as I can remember. Technically I was just diagnosed with severe IBS and Chronic Fatigue Syndrome, but I was very limited in what I could do - I finished university by distance ed, never could handle working more than part-time, could never do two activities in a row, etc. i had my first child when I was 26, and it was during my second pregnancy that I became very disabled. In spite of that, we went on to have our third when I was 29. Would I do it again? In a heart beat! I require someone with me and the kids all the time since I can't handle them on my own (even with my wheelchair), so that needs to play into your consideration. Can you find help? The baby stage is hard because they need to be carried and snuggled and rocked....but then they are toddlers and into EVERYTHING! I find it's easier with my 3 and 4.5 year olds since they are more self-sufficient, but I still can't take them out of the house alone because I can't even help them to the bathroom. The other thing I'd suggest considering is what your husband is like. Mine is amazing - supportive, loving, non-complaining. It's partly his very mellow personality, and I think partly a special grace the God has given him. But with our last baby, he's the one that was up to get the baby for feedings, rock him back to sleep, etc., and he does all of the cooking, laundry, and such plus is the go-to guy whenever he's home from work. It's a lot. And he's tired. But we're really thankful for our kids! And if I may add, I also have the other perspective. My mom has had health problems since long before I was born, and that was just "normal" in our house. She has fibro, and I'm quite sure she also has a form of dysautonomia and possible MCAD - so she was very limited. But I don't begrudge her any of that, and neither does my sister. She loved us, cared for us, supported us and encouraged us! Yes, she missed outings and trips and we couldn't just have friends over whenever we wanted, but she's a fantastic mom from whom we've learned a lot - including about empathy for those dealing with illness. All this to say, as a mom I worry about the impact my illness will have on my kids, but I am quickly reminded that there's ways to be an amazing mom in spite of physical limitations. Anyways, I don't know if any of that helps, but please feel free to ask if you have any questions!

After seeing all the posts about remissions, it makes me more hopeful! . I started having acute symptoms about 3.5 years ago (I now know it had been happening for a long time before that, but chalked it up to CFS), and I have had no reduction of symptoms save for one blessed day two years ago! Hopefully this means my time for remission is coming soon!

I only buy off of Ebay, but I do run a (very) small business via a website. I find it works well because it's all via the computer, so I can email folks whenever I'm able to, and since I make all of my own merchandise I am able to give very accurate timelines of when orders will be shipped out. I know there are people who can make a living off of Ebay, but it takes a pretty significant commitment of time and energy. Good luck, Ernie!

I think I'm like Firewatchef - there are some meds I'm crazy sensitive to, and others don't seem to do anything. For example, I just finished a Midodrine trial at 10mg 3x a day, and aside from the tingly scalp and shivers, I saw absolutely no other changes. It's bizarre, but it seems like everything to do with this illness is

Glad to hear that it went as well as a colonoscopy can . When you said they did a biopsy, did you mean that they'll use that to rule out everything else and thus diagnose you with IBS based on exclusion, or that they actually biopsy to test for IBS? Thanks:)

I noticed, too, that I've been having weird(er?) POTS flares since winter started, and I think I realized why! Every time the furnace cuts in at our house (we keep it at 19 C, but when it's super cold out, it cuts in regularly), I become very symptomatic. Does anyone else find that happens?

Yup - that's why I only take baths! I've only had two showers in the last three years...after I gave birth to each of my sons, since there was only a shower at the hospital! Be careful if you're reacting in the shower - my sister randomly faints in them, and has been very fortunate thus far and hasn't been seriously hurt.

I struggle with this, too, as I'm sure we all do. I honestly think part of it, though, is not from malice but just lack of comprehension. The folks on this forum know what it is like to feel this way day in and day out, to have every facet of your life changed by something that no other human can see....but for the "normal" person, they can't even imagine the impact this illness has. I think that's why so many of us really struggle with getting approved for disability - how can you make a healthy adjudicator realize that you're always on the cusp of passing out (or constantly fainting), not to mention the dozens of other serious symptoms that plague us daily. If you stand back (pardon the pun!), it really does sound ridiculous, doesn't it? I am very grateful to have a very good support system. My DH is awesome, and although my kids are all under five, they are as compassionate and understanding as they can be at their ages. My parents live close and give us all the help they can, even though my mom is also disabled. My mostly-healthy sister has a hard time understanding, but I think she really does try even though she doesn't understand the depths of my disability. A dear pastor friend of mine has an illness that no one can even name - he has lived with excruciating pain, random paralysis, and a host of other symptoms for 30+ years that they best doctors in the world are stumped by. I remember him telling me that I had to just deal with the fact that other people weren't going to understand - because they simply can't. The blessing of these strange illnesses is the compassion it gives us for those that suffer, and we are so blessed to live in a time where we can find support in places such as this forum. It's so great to find a place where I'm "normal!"

As others have said, the randomness of this illness is really amazing! I had one glorious day, almost two years ago, when I reached the point in my third pregnancy where morning sickness passed....and for whatever reason, I wasn't a POTSy that day . I literally cleaned the entire house with my daughter that morning, and my husband was stunned to come home at lunch and see me not on the couch . Take the good days as blessings, and I hope they become more and more frequent for you

I also experience symptoms, and in addition to the gravity issues, I think it also has a lot to do with the fact that you're standing still. You wait for the elevator, then wait inside to get to the right floor. Plus I find elevators are usually very warm, and I usually end up in one with someone who is doused in cologne or perfume.

I don't anymore . I can't handle being around the stove at all, as heat intolerance is one of my most debilitating symptoms. As soon as I start to get warm, I'm toast. A few months ago I tried sitting on a chair to brown some ground beef for a casserole, and not only was I horizontal for the rest of the day (starting from before lunch), but it took days for the fatigue/weakness to break. Thankfully my awesome hubby does the cooking, and he actually enjoys it so it's an added plus!

The normal ranges that doctors use tend a bit problematic whenever you're not the norm. My BP is normally 90/60, so if I get a reading at 140/85, that's really high for me and I have major symptoms....but for another person, it's not a big deal. well, at least we're all unique!

I found the same thing! I have 30-40mmHg waist-high hose, and I found my symptoms were far worse when wearing them. Interesting to think it could takes weeks to acclimitize...