Frugalmama

Hey Bren! I'm still waiting to hear back...I was supposed to find out by August 10th if I am approved, but that has now been pushed back to September 30th (which will be more than 6.5 months since I applied). I'd just advise to go over everything a couple of times to make sure all the right forms are filled out...there's lots of them! And remember that the majority of people are rejected the first time through, so the probability of having to appeal is pretty high...so keeping copies of everything you submit is probably a good plan! HTH

I have no eperience with this test, either, but am wondering if there are any Canadians that have had this done, and if so, where? I have become incredibly heat intolerant, and almost never sweat even when I'm on the verge of passing out from over heating. It would be interesting to see if anything could be done about that!

I recently got wrist ice packs, and they have made a huge difference. I am extremely heat intolerant, and normally I am about to black out as soon as I walk outside when it is warm. With the wrist packs, I can actually get through a quick trip into a store!

I was diagnosed with a TTT, but did not faint (I just experience almost constant pre-syncope. My cardiologist did mention at the time that she has not seen much correlation to the degree of jump and the level of disability. My resting HR is usually in the high 70s to low 80's, and the majority of the time my heart rate is just over 120 when I have a major POTSy episode....and I am experiencing a high level of disability. My doc says she has had people whose rates jump up 80-90 beats a minute, but who experience far less other physical symptoms than I do. Such a strange illness!

There are a lot of chores that we have to do since we have three little kids, but we do try to keep things to a bare minimum and, as someone else mentioned, we try to declutter constantly. My sweet husband does all the cooking (the heat from the stove is too much for me), laundry (it's in the basement), dishes, etc. I can sweep, tidy up the kitchen and clean most of the bathroom, etc. from my wheelchair. Some things, like dusting, get done when possible, and our beds are never made . Do you have something like home care in your neck of the woods? Here, we could have someone come in to help attend to my needs if required (light housekeeping, etc)?

Does anyone know if exercise is supposed to help folks with hyper POTS or who have POTS and CFS, or is just for folks who suddenly developed symptoms out of nowhere?

Weakness is one of the most frustrating symptoms! You know, my symptoms kind of gradually became more and more debilitating so my DH and I hadn't really recognized how far I had slid. Then one day, we saw interviews on TV with someone with stage 4 pancreatic cancer and another person with an artificial pump working their heart, and we realized that their quality of life and endurance was the same as mine! It was a huge shock to make that connection! I find that resting is really the only thing that helps, as well as staying in nice cold air conditioning i've also started using a wheelchair so I can see my little ones enjoy activities, go for walks with them, etc. It's made a huge difference in increasing my quality of life

Like Sarah, I can see know that I've had symptoms for probably about 10 years, but I first realized something was really wrong during my second pregnancy. I've just realized that I probably noticed the symtpoms because I got pregnant with my first son right when my daughter was starting to walk and was out of her bucket carseat. Up until then, I could always just sit/lie down as needed, and she was safe and contained. All three of my pregnancies were completely uncomplicated, and had midwifery care for the last two. I was 26, 27 and 29 when my kids were born, and we're not going to be able to have any more because I can't take care of any of the kids on my own right now without a babysitter for me . My labours were 15, 3.5 and 4.5 hours and I pushed fifteen minutes or less with each. had an epidural with the first and the last two were natural. With my first I also had fentanyl (similar to demerol) before the epidural, and I would never do that again. I think because of my sensitivity to medications, I felt completely whacked out for upwards of 10 hours, part of which was after my daughter was born....it was almost like a strange out of body experience I found that the pain during labour was less of an issue than the exhaustion from being up for so long without sleep. When I had the epidural the first time around, I napped for a couple of hours after it kicked in...the reason I agreed to have it was that I was concerned I wouldn't have the energy to push and end up with an emergency c-section, and I'm glad I did it . We talked about it before the last two were born and DH and I agreed that if the baby was breech or very large, we would definitely plan a c-section rather than risk an emergency one. I personally think it would have been too physically demanding to go through labour and then also have to recover from surgery! If you have any other questions, pleae don't hesitate to ask!

I can only tolerate a minute or two outside at a time, so I also looked into cooling vests. I wanted something a little more inconspicuous than a vest, so I ended up getting wrist ice packs. So far they have been fantastic! I'm not sure how that would work if you're out all day, though

I started having major symptoms halfway through my second pregnancy, and my symptoms remained the same throughout my third as well. For this last pregnancy, I actually went weekly for IV infusions for the last trimester, and it seemed to help for a day or two immediately afterwards. Although the symptoms themselves did not worsen, it is a challenging illness to deal with while your body changes due to the pregnancy, as well as taking care of any other children you have. I had to have help caring for my 3 and 1 year olds while I was pregnant this last time, and now need someone with me and the kids all the time. So I guess one thing to consider is how well you can manage an infant with your symptoms!! But I consider each of my kids to be an enormous blessing, and I am so thankful for each one of them. Yes, it is challenging being a parent with POTS, but I think it's challenging for anyone, regardless of disability

Thank you so much for posting your experiences! I also got an initial email from Dr. levine's office, but I am hesitant to sign onto the study since it requires at least a three month commitment. I have three little kids, so I can't be out of commission right now I do have a question, though, for folks that know about the protocol! I had Chronic Fatigue for years before developing POTS, and I have experienced major post-exertional malaise ever since the first diagnosis. I have started doing 10 minute sessions on a recumbent bike at home, and have experienced crushing fatigue, weakness and nausea ever since. I guess I'm not sure if the symptoms are just a normal POTSy reaction or the same type of CFS reaction I've always had...and I have no idea how to tell the difference . I'm concerned about doing longer workouts at a higher intensity for weeks/months if I'm still experiencing the same symptoms...since if it's just the POTS "stuff" it will probably get better with time...but if it's CFS, I could completely crash. Any thoughts? It is really great to here how well folks here are doing with the protocol! It's really encouraging to hear that some symptoms can show improvement!

I personally don't throw up (not even during two natural labours!), but the heat does bring on crippling fatigue, weakness and nausea. As soon as I get the slightest bit warm, the amount of time I can stand before blacking out diminishes rapidly. I do not spend any time outside, and we keep our air conditioning at 20C all the time. Have you tried any cooling devices? Just this week I received some wrist cooling packs that I ordered. I've yet to try them outside, but I'm hopeful they will be effective. The company also makes full cooling vests, as well as small ones that go across your stomach under your clothes.

From my understanding, they don't use the Holter to diagnose POTS, but rather to diagnose abnormal rhythms. I had my second Holter done a number of months ago (a 48 hour one), and I had POTS symptoms every time I stood up during that period. But when the report came back, it was "normal". Needless to say, my GP was shocked, as during that period, my average heart rate was above 100 bpm (including time spent sleeping). When I discussed it with the cardiologist, she just said, "well, I don't see abnormal rhythms, so it's normal". The report did have a side note saying that I had experienced a varietyof symptoms, but didn't even touch on the fact they they occurred when I was standing (which also had been recorded in the log).

I am not bed bound, and usually have less than five minutes that I can stand before I black out. That being said, I experience almost all my symptoms (except for pre-syncope) very quickly after standing, so standing for even two minutes or so leaves me extemely lightheaded, weak, and extremely fatigued. I ended up getting a chair about a month and a half ago, and was surprised that I could use it all the way throughout my housr. i don't always use it, really only when I know that I'm going to be up and down over and over, standing for more than a couple of minutes, or doing something with my kids where they could drag their feet (I have three kids four and under). And if I had known what a difference it would make, I would have looked into a chair a long time ago!! As well, we use it when we go to get groceries and on longer outings. I am able to wheel myself through a grocery store and am exhausted afterwards..I tried the mall, and it almost killed me . The amazing thing about using the chair for outings is that I am still coherent enough to carry on a conversation by the time we are making our way through the checkout! Before, I would honestly have a hard time remembering how to pay sometimes because I was so close to hitting the turf. I am not sure about the long term effects from using the chairm but right now it has given me a lot of freedom and independence back, and that has been amazing!!

Rachel, I could have written that response myself! We too have opted for in- home help over the past year, and it has been a tremendous blessing! I love having the kids around me, and I still get to play with them, sing songs, read books, etc., while also overseeing what they are learning and how they are behaving. it is so hard not being able to take care of my own children, and needing someone with me to take care of them. But they are loved, happy and well-adjusted, and I'm happy to get to enjoy what I can with them . And although I'm sure you miss your daughter immensely during the day, don't forget that you're doing the best you can with what you've got at this point in time! I also want to encourage all you POTSy mamas that the physical things are just not as important as the emotional! My mom dealt with major back problems and fibro from the time I was very little, and she missed out on so much stuff as my sister and I grew up. But we never felt like she let us down, or wasn't acting "like a mom". We grew up understanding her limitations, and it made us much more empathetic toward others with health issues. She loved, encouraged, and supported us, and those are the things that we remember now

Hi Brynne! I have actually been going through this exact same thing, and the decision is not an easy one! We decided to rent one for outings to stores and such, and it has been awesome. I also realized that I could use it to wheel around my house, and now I feel silly that I didn't think of it before. While I'm more than capable of getting around the house, I run into trouble with doing things with/for my little ones. The first evening I got the chair, I was able to, one after the other, take my two older kids to the potty and put them to bed. I can't even tell you the last time I did that since it requires so much standing and waiting. It was total freedom! Yes, I do feel dorky about using it in public, but I'm working on that . We're actually also looking at getting a scooter so I can get around without needing to be pushed...we have three kids four and under, so my husband is always on stroller duty . Part of my struggle lies, I think, in that this isn't an easy illness to explain. If you ran into someone you know and they asked why you're in the chair, and you could blame a broken leg, I'm sure you wouldn't feel odd about using the chair! I found it helped to work on a quick explanation so .i was prepared! But please do what you can to enjoy "normal" life! As the others have mentioned, quality of life is incredibly important. I am in Canada, so I'm not sure what programs are availble in your area, but I am getting a permanent chair through the society for disabled persons in my province (free of charge). Maybe you have a similar program around where you are?

When you spoke with the youth pastor before, were you able to really spell out why a one-on-one conversation would be appreciated? I find that since POTS is such an unusual illness, even explaining the physiological implications doesn't seem to help folks understand why it's limiting on a day to day basis. For example, I have three small children and can't take them out on my own (I can't stand long enough to buckle them in the car, etc). But if I just tell people that I can't stand for more than a couple of minutes, they don't think through how that impacts my life and often, in the next breath, will invite me out to a playgroup or walk in the park . Maybe just really spell it out? I'm sure his pastor would be much more accommodating if he fully understood! Good luck, and what a great parent you are for looking into these things for him!

I don't have anything to add about the muscle building, but your IBS symptoms are identical to what I experienced for about 8 years. I'm 5'9" and couldn't get above 118 lbs! I was diagnosed with severe IBS-D and then was basically told to do all the things I was already doing (cut out caffeine, red meat, etc), and none of the typical IBS meds made any difference. The biggest help to me came from heading to a naturopathic doctor who did an eliza antibody test to see what foods I was sensitive to. I ended up cutting out the things I was reacting to (dairy, egg whites, and a couple of others), started eating healthier, plus the IBS specialist informed me that Immodium is totally fine to use during a flare up. Since IBS causes spasms in the intestines, the Immodium is a perfect fix since it relaxes those smooth muscles. I was even told that I could take it preventatively before bed since my flare ups would start first thing in the morning. It was a slow process to introduce more fiber into my diet, but I did it bit by bit and it has also made a huge difference! I usually eat 2-3 apples a day, and that has been miraculous in the change to my system! I think you'll find that if you can get those symptoms under control, some of the others are easier to deal with. I still have flare ups now and again, but nothing compared to a few years ago. I just about ran myself into the ground at university because I couldn't eat breakfast or anytime while at school because I'd spend hours in the bsthroom afterwards and would be in a huge amount of pain. It was absolutely awful! I hope that you are able to find something that can help you get back on track . Oh, and I also take 2mg of Remeron, as one of its major side effects is constipation. My doctor got me to try it on a whim many years ago, and it worked like a charm!