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Everything posted by Frugalmama

  1. Have you looked at all at the MCAS/Mastocytosis info posted throughout the forum? For 15+ years I lived on Immodium, and had constant diarrhea. Like, all the time, everything I ate.... When I finally started looking into MCAS because of this forum and got to a good immunologist (who later discovered I actually have indolent systemic mastocytosis), we figured out that the "episodes" I was having were anaphylaxis. Benadryl now gets rid of the diarrhea almost immediately. I wish I had known that for the last decade
  2. Tryptase is a bit of a tricky thing . Mine has been recorded once at 13 and twice at 11 (the normal range used by our labs is up to and including 12) and I was diganosed last month with systemic mastocytosis via DNA test and a bone marrow biopsy. The hemotologist and the pathologist were shocked, as was I, as I was under the impression that tryptase had to be over 20 for systemic masto to be possible. Turns out it is
  3. Welcome villen . I was extremely symptomatic for thr latter half of my second pregnancy and throughout my third (I have become progressively worse, and have also just been diagnosed with systemic mastocytosis). I had a holter monitor on for 48 hours when I was about 8 months pregnant with our third, and my average heartrate over the 48 hours was 99 beats per minute . And I was already completely sedentary at that time since I'd black out if I stood for more than a minute or so. Anyways, I wasn't on meds at all until I was breastfeeding #3, and then I tried Propranolol (which honestly did nothing for my symptoms). Even with a super wonky heart rate and all the other disabling symptoms of dysautonomia, both of my boys couldn't have been any healthier. They were 15 and 10 days late, and each weighed close to 9 pounds. I opted for natural childbirth with both (i.e. no pain meds), and although I needed constant help with the baby afterwards (since I couldn't stand up while holding baby), I didn't feel any worse after labour than I did before.
  4. Diamond, there is a good list on pages 5 and 6 here: http://tmsforacure.org/documents/ER_Protocol.pdf . It also varies from person to person, though
  5. Yes, this is such a tricky topic. Like doozlygirl, I have mast cell disease (systemic mastocytosis), and any kind of physical activity (including standing for a couple of minutes, walking for more than a couple of minutes, lifting anything, etc.) causes anaphylaxis. So exercise is definitely out for me right now . But I am thrilled to hear that so many people are seeing positive effects from their exercise routines - even 10% improvement can be huge in terms of quality of life!!
  6. Hi again! The only skin manifestation I have is flushing (and before being on all the anithistamines, I would off and on get burning and/or itchy skin) - but no spots whatsoever. You should try an immunologist - they can test your tryptase, n-Methylhistamine, etc. and go from there. One thing you can try if you tolerate it is Benadryl - if your symptoms are relieved when you take it, there's a very good chance that mast cells are the culprit. Anaphylaxis can look different in each patient, but mine typically follows the pattern of: extreme weakness, fatigue and flushing, then awful abdominal pain, nausea, ridiculous diarrhea and sometimes vomiting, also headache, chest pain, tremulousness, tachycardia, mucous running down my throat, pre-syncope, etc. at this point I know I'm headed downwards, and I use liquid Benadryl (although I've now been advised to use my epipen). At this point my BP drops at least 30 points, and I have a period of "forced sleep" (i.e. I am unable to stay awak) for at least two hours. Please note that I don't experience ANY hives or distinct swelling - although it is the most common manifestation of anaphylaxis, it is not necessarily present .
  7. Batik, I'm sorry to hear you are going through all of this. I could have written your first paragraph - I also started with migraines, then was diagnosed with CFS, and also misdiagnosed with Celiac Disease and then with IBS. Although I had minor bouts before, I started experiencing constant orthostatic intolerance during my second pregnancy five years ago. Over the past eight months, though, I started looking at mast cell issues, and just last month was diagnosed with indolent systemic mastocytosis. The hope is that with proper meds, my POTS symptoms will also diminish (almost every person with mast cell issues has some degree of POTS). Here's a link to a great forum....http://mastcelldisorders.wallack.us/yabb/YaBB.pl. Since you are symptomatic at times other than when you are standing, I'd really encourage you to explore mastocytosis/mast cell activation syndrome more thoroughly. Dr. Afrin, one of the mast cell experts in the US, said in a lecture last year that he sees a lot of patients misdiagnosed with primary POTS, but upon careful investigation they experience symptoms other than when they are standing. I also have major reactions from vibrations, cannot regulate my body temperature, and am exhausted nearly constantly (I may only have a few minutes of reprieve every day). It's important to figure this out for a couple of reasons (aside from the obvious ones of feeling better!) - one of the first treatments for POTS is a beta blocker, which mast cell folks are not supposed to have. Also, lots of POTs doc recommend lots of exercise, which can cause anaphylaxis in people with mast cell issues. I've come to realize that I may not have true POTS, but rather have an anaphylactoid reactions every time I stand (or crouch, or lift anything heavy, etc). Please check out the forum I linked to - there's lots of info on testing, diagnosis, medications,etc.
  8. Use it . I totally get that it's hard to overcome the "what will other people think?" mentality, but it's your birthday and you should get to enjoy it! I started using a wheelchair last year when I was out with someone else (we have three little kids, so my hubby couldn't push the chair and stroller by himself), and it was AMAZING the difference it made. I was totally shocked! It let me actually enjoy what we were doing rather than trying to just survive it. Ignore what other people think - I know it's hard, but it will get easier each time you do it. . I also always felt silly sitting down on the floor in a store - until my wise husband pointed out that it was better than fainting and hitting my head. Sometimes there's not a perfect option, but one is definitely better than the other!
  9. My cardio had me wait until I was done breastfeeding before I started anything except a beta blocker. I'm glad I went that route, as none of the meds actually helped my symptoms
  10. I didn't experience any symptom relief during any of my pregnancies. It's true that your blood volume increases when you're pregnant, but there are a whole host of other physiological changes taking place . For the last two and a half months of my last pregnancy (when I was in the worst shape), I went for weekly IVs, and it helped with some of the symptoms for the day or so following the IV. At the suggestion of my cardio, I didn't take any meds until after I was done breastfeeding my youngest - I'm very glad I went that route, as the meds didn't work anyways . As for labour, I found the biggest hurdle during my first was fatigue. I had a very long labour without sleep, and I finally asked for an epidural so I could have a nap. After I slept for a couple of hours, the delivery went smoothly. I didn't have an epidural with my second and third, and found that I recovered SO much faster than I did with my first. The hardest part for me was not being able to stand while labouring, as I experienced presyncope every time I tried I was having some awful pelvic issues and couldn't sit, but you might find a birthing/yoga ball to be helpful. And lots of IV fluids . I think an important thing to consider is a point Naomi touched on - you might need a lot of help after the little one arrives. Since my youngest was born 22 months ago, we have required full time help with our kids. Please make sure you have at least the first week or two covered with someone who can give you a lot of help, and to ensure that you can get as much sleep as possible! Enjoy the last few weeks of pregnancy - you'll miss all of those kicks as soon as the baby arrives
  11. Yes, this happened to me in December (ironically on a flight to an autonomic clinic!). As I normally am when flying, I was fast asleep for the first 75 minutes of the flight. I woke up to tachycardia, flushing and horrendous nausea and abdominal pain. I knew the only thing that would help would be to lie down, and since the flight was packed I ended up lying down on the floor in front of our seats (thankfully we happened to be at the bulkhead). I stayed there with ice on me until I couldn't anymore, and spend the rest of the flight glued to the toilet and vomiting. I have to tell you that, in retrospect, this was the most embarassing thing that has ever happened to me . I managed to get through landing in my seat without any more vomiting, etc., and they thankfully let us off the plane first. I then conked out on some seats just inside the door of the airport for about 45 minutes. Ugh. Thankfully my awesome dad was travelling with me and he explained to the staff what was going on, and he convinced them not to call the paramedics I'm also thankful my three little ones weren't with us - they would have been very freaked out. I will say, too, that I am now being treated for MCAS, and it seems like the airplane incident took my episodes to a whole new level of severity. I'm sorry you're dealing with this as well - I wouldn't wish it on anyone!
  12. I go for as many massages as my insurance will cover (every two months or so), and I find it helps short term. Since massage stimulates blood flow to the area massaged, I do find a marked difference after my neck and shoulders are worked on. It's important to find an excellent therapist, though, as some specialize more in relaxation than therapeutic massage. Jpjd, I am currently being treated for mast cell activation, and I found that it doesn't seem to be the massage that causes issues, but rather the (very natural) scent of the massage oil my therapist uses. I am now booking in for her first appointment of the day so I don't get the smell transferred to me . That being said, pressure can definitely cause mast cell degranulation. I have three small kids, and if any of them sit next/on to me, it causes intense symptoms. Who knew someone could be allergic to snuggling?
  13. I am also been worked up and treated for mast cell disease, and I can't handle direct sunlight at all. I live in Winnipeg, and even in the dead of winter when it's -30 and there is direct sunlight on me, I become extremely symptomatic. I also have a huge problem with my eyes and sunlight, but I'm not sure if it's part of MCAS, POTS, or migraines
  14. I don't think it's a quick process, unfortunately. I have been on the treatment protocol for about four months, and have not seen much improvement. That being said, I do now see tiny (5-10 minute) breaks between epidsodes of feeling awful. I'm starting to think that the "chronic fatigue" that I was previously thought to have was actually back to back (to back to back....) reactions. My immunologist today told me that it can be a very, very long process of finding the right cocktail for your symptoms, as everyone is so different. I'm about to start Ketotifen, and I have heard from other patients that it drastically helped their dizziness and blacking out. Here's hoping! . As well, my list of triggers is a mile long. for example, I used to think that I was having POTS/dysautonomia symptoms from sitting for 30 to 45 minutes or so at a time, but upon careful journaling I've realized that it is always an outside factor that is causing a reaction (smell of food cooking, furnace cutting in, one of my kids sitting snuggled up beside me(pressure), eating, etc.).
  15. Do you need to have it prescribed? There are places online that sell them, as well as other cooling devices. I'm in Canada, so it might be different, but even my doctor-prescribed compressions stockings weren't covered by insurance
  16. I have major issues with this as well, and aside from having the air conditioning sitting on "freezing cold", I sleep with an ice pack under my pillow. If I don't do this, I wake up drenched in sweat, and can't get back to sleep. Yuck sorry to everyone who has to deal with this, as it is not fun.
  17. A lot of the research had 30 bpm or over 130. On the day of my TTT,I mistakenly went to the wrong hospital and we had to rush to a different one. After speed walking through the hospital, my HR stayed at 105 for 45+ minutes while they set up, waited for the DR, did a baseline, etc., and my HR stayed up around 126-128. The doctor diagnosed me with POTS (and sent that same info to me GP), so I applied for disability last March. In November they asked the cardiologist for more info, and she wrote back that based on the new consensus document, the criteria was 30 bpm so I didn't have it. So frustrating, since my resting HR is normally in the low 80s, and my typically symptomology is that it jumps to around 126. So I was turned dowm because I "didn't have POTS" and therefore hadn't had treatment. Sigh. The funny thing is that they turned me down the day I was in Hamilton at the autonomic lab. They wouldn't wait to make the decision until I had the info back from Hamilton, they based it solely on the cardio's letter from here (and even though that same cardio is the one who got me provincial funding to travel for the appointment). I will say too, though, that the adjudicator I had was quite hostile (rude?) to me, and the new one I have now seems much more kind. I think a lot of it really does have to do with who you have, unfortunately. Anyways, sorry for the tangent . If you do end up traveling to Hamilton, please ensure that you know who you will be seeing. It was a very long trip for me (flying, then driving), and I saw a resident who knew far less than I did about this illness. He told me a number of things that I know were completely untrue, and looked slightly panicked when I asked more in-depth questions. For me, it was a huge waste of time to go, because we didn't learn anything new. Oh, and since you had your GP fill out the forms, they will most likely come back to you and require information from your internist as well, especially if the Gp is referencing test results/observations from the internist!
  18. I'm at the reconsideration stage with CPP, as I was turned down the first time through. I had been diagnosed with POTS, and 10 months later the diagnostic criteria changed so I didn't fit the criteria any more (which I found out through CPP - my doctor didn't even bother to tell me). I was told that I was turned down because I didn't have a diagnosis and therefore hadn't had treatment. So, from that, I would guess that you have to try all reasonable remedies. But like you said, there is nothing proven, so if your specialist is willing to say that you've done all you can, that might be sufficient. Good luck - it's a long process (I applied March 2011) and most people are turned down the first time through.
  19. I have been symptomatic for many years, but acute symptoms began during my second pregnancy. I was told it was "pregnancy related" and, lo and behold, it didn't go away when he was born . We also went on to have another child (our third), who is now 21 months old. Aside from me feeling as awful as I normally do, my pregnancies were very uneventful POTSy wise. Our children have all been extremely healthy (the boys were 8lb10oz and 8lb13oz), and both boys were born naturally without drugs. With my first labour, it was very long (24+ hours), and I ended up having an epidural so I could sleep before I had to push. I also had fentanyl before the epidural, and it looped me out for 12+ hours afterwards - I would never take it again if I could avoid it. My recovery period was WAY faster without meds. For the last 9 weeks of my last pregnancy, I had weekly IVs to try and stabilize me a bit, and I also had one the day after I gave birth which helped me to bounce back a bit quicker. While I understand where Charmed is coming from, I am in completely the opposite camp. My mom has fibro (and, I think, MCAS), and has been extremely ill throughout my life. Yes, she missed a lot of events and such, but she is loving and helpful and I am so glad that we have such a close relationship. I personally am very ill right now, and only get to go out of the house 1-2 times a week for a very short period of time in controlled circumstances. Yes, it's absolutely difficult, but I am very glad that I was born . There is a part of me that worries that one (or more) of my children will end up in this same boat, but I know that they will be able to handle it. I have learned so much through this experience, and I wouldn't trade these trials for anything. One thing I will mention is that although getting through the pregnancy is obviously the first step, it's what comes after that is the most challenging. Depending on how disabled you are, you might need A LOT of help with the baby. My husband is literally super Dad, and he is "on" from the moment the kids wake him up in the morning until he goes to work....then he comes home for lunch to feed us....heads back to work...and comes home to wake the kids up and cook supper. We also have full-time help for every moment that he is gone during the day, which is complicated to organize and expensive . So, please make sure that you have a fantastic support system, and that you look seriously at your abilities and limitations. That being said, motherhood is the most amazing thing. My kids (now 5, 3.5 and almost 2), love me in spite of my limitations, and I believe are very compassionate as a result. There's always a silver lining
  20. I think coming to terms with chronic illness involves going through the stages of grief - over and over again. I have been ill for 15 years now, and although I'm usually good with it, it sneaks up on me every once in a while and I need to take a few minutes to mourn what was and what now isn't. One thing I find especially difficult is folks always telling me to keep hoping that this will one day go away. I don't mean this at all in a defeatist way (I am a super positive, cheerful person), but I need to be able to accept that this is how life is. If I constantly lived in a state of hopefulness of waking up tomorrow as "me" again, it would be extremely discouraging. But coming to grips with how my life is now is what keeps me sane...and if I were to be miraculous healed tomorrow, it would be a wonderful and very welcomed surprise
  21. If you have MCAS, excercise could definitely be triggering your mast cells to degranulate. Are you on meds to get those reactions under control?
  22. That's so interesting, ramakentesh, as the co-founder of our national masto society said that nearly all (or all) of the people she has spoken with who have some form of mast cell disease show POTS as a symptom.
  23. It's hard, isn't it? I've been turned down once for disability (I'm in Canada), and am working on my information for reconsideration. We're managing right now, but everyone at my hubby's work has been cut back to .8 and it may go further. We have three little kids, and require someone to be with me all the time when I'm home with them. We've been incredibly blessed to have a local organization provide subsidized full time help for the past year and a half since our youngest was born, but that will end come September....and then (unless I am drastically better by then), we will have to hire someone fulltime out of our pocket. We're still not sure how that's going to work, but the only other option is putting the kids in full time daycare, which we don't want to do (especially because then I'd just be sitting at home by myself all day. I also run a little business selling kids items that I make. It mostly keeps me from going crazy with my physical limitations, but the extra money it brings in is also a help. Do you have any hobbies that could bring in some money? I just wanted to mention, too, that Scentsy might be a bit hard on your system since everything is so fragrant! If it starts bothering you at all, please be careful
  24. Have you all looked into MCAS? I know it gets mentioned here a lot, but it looks like that's what is causing my POTS symptoms. When I have major cramping, stomach issues, flushing, etc. with the BP drop and then tachy, it's a MCAS episode. It's definitely worth checking into!
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