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MamaTrain

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Everything posted by MamaTrain

  1. I have heard of this happening to another girl I know who is not diagnosed with an autonomic disorder but I suspect she may have one since she had such a horrible reaction to it. She experienced POTS like symptoms and as time went on it gradually got better. She said she could not wait for the shot to wear off. Hormones play such a role in how we feel. I hope your daughter is feeling better soon. POTS is bad enough without any extra stuff to set you off! KC
  2. Issie, What discussion are you referring to? KC
  3. Jennifer, Very typical for dysautonomics. If you happen to be starting your period and you are under the weather it's a double dose of you know what! I tell everyone to use Elderberry to ward off viruses. It is amazing stuff! KC
  4. HI Emma, My cardio, who studied with Dr. Grubb, says that menopause is a dysfunction of the ANS and when you already have a dysfunctional ANS it makes if feel like heck on earth! I was tested and found to be extremely defiencent on all female hormones and cortisol. I was placed on bio-identical hormones and I am taking an adrenal booster and it did make a difference for me. It didnt make it go away but it was definetely better. You will see that many of us have trouble around our cycles and that's because the hormones are dilating and constricting. HRT is not right for everyone so find someone in your area that is skilled in it and preferable one that uses all natural products. Hope that helps! KC
  5. This is actually a very good question and I have wondered that myself. When I get my labs back it never appears I am low on sodium so why do I need to eat a ton of salt I wonder? Maybe it's the way our bodies use the sodium to raise our B/P than anything else. Hopefully one of the long timers can answer this one for you! KC
  6. Great info MM! I have read that some forms of magnesium are better for the side effect of diarrhea than other forms. Cant remember which one they said is better so check it out!
  7. Hey Brye! Sorry you are having such lousy weather. Getting that many kids dressed to go play in the snow is definitely a work out for sure! I am not sure of the ages of your kids but I have one suggestion that I used to do with my boys as fun indoor activity/snack all at the same time. I would get out some white paper (butcher paper works great) and tape it to the table length wise. Then I would get out some water color paints (or non-toxic markers) and we would draw an ocean in the middle with a "beach" on both sides for each boy. We would color it in adding starfish on the beach etc. Then I would get out a bag of Goldfish crackers, a small serving a peanut butter for each boy and pretzels rods. We would put the Goldfish in the "ocean" and then our pretzel rod would be our fishing pole and the peanut butter was our bait. Dip the pretzel in the peanut butter and Go Fish! My boys LOVED this and would spend like 2 hours with it! They loved to have friends over and show them how to fish too! Hope you can try it because your kids will love it! KC
  8. Lieze, Hey there hot mama! LOL! Ok so not that funny but seriously I know what you're going through. My cardio (who studied with Grubb) said that when you have a autonomic dysfunction already it makes hormone changes very difficult to deal with. Even the regular monthly changes every woman goes through but if you are starting the change it can be a very difficult time for us. Most women have symptoms during menopause but ours are like magnified by 1000! When I get one of these hot flashes (it feels more like my skin is burning to me) I either down a very cold glass of water or go outside where it's cool and it goes away fairly quickly. I hope this helps if only just for the comfort of knowing you are not alone! KC
  9. Hey MM- What exactly is the thought behine the Turmeric? Just curious! KC
  10. I have decided I am not going to go gluten free until I have a test that says I need to! I just feel like I've given up so much already with this stupid dysauto that I am not going to give up things that I don't know for sure I am reacting to. My doc wants to do a food intolerance test but it's like $200 so we haven't done it yet. If it comes back saying I need to "go against the grain" then I will do it then! It really makes it hard to cook for your whole family when it's just you that is doing this and I can tell you right now my guys are not going to go gluten free! Hope you make the right decision for YOU! KC
  11. Hello! I saw my cardio just this past Monday and now she would like to add Florinef to try to boost my blood pressure. 2 weeks ago when I had the TTT she said no on the Florinef because the test did not show a drop in BP it actually showed a spike in BP So she prescribed a BB. I honestly thought this whole time my BP was dropping too much so I was surprised with the higher BP in the test! Now that I have been there a few times she said she noticed my office BP's and my echo BP was on the low side so that is why she added the Florinef. I havent even started the BB yet and now I have another medicine to agonize over! Which medicine would you start first? If you take Florinef did it help you enough to make a difference? Did it throw you for a loop at first? Also, will it raise my BP too much when I dont want it to? I'm confused! I truly do want to try them but my experience with meds is they usually dont do anything but make me feel worse! Your thoughts are more than appreciated! KC
  12. So sorry Yuliya! I would really do your homework on Lunesta. Anything that affects the nervous system affects how you feel! Have you tried other natural sleep products? I hear Melatonin can not work so good with us but there are others. Hope you get some rest and if you need to scream and cry just do it...you will probably feel alot better afterward! KC
  13. Does the NDRF.org ( I think that is it!) site have any suggestions? Since they are so young has any doctor suggested the familial dysauto? I dont know all the criteria of it but one thing always sticks out in my mind is something about Jewish decent being way more affected and having no tears when they cry. I am sure there is alot more to it but that's what I remember from what I have read. Maybe some of those sites would have some support groups or something since it's affecting children. Keep searching....most of us have a doctorate in Google by now if you know what I mean! KC
  14. Hello! Welcome to the boards! I do beleive this is the first post I have read regarding children so young. I can not imagine what you have been through! And those poor little boys...just breaks my heart to think of little ones having to go through the horrible ordeals of dysauto! Have you looked into the childrens dysauto sites? I remember reading a story online awhile back where a Mom found out her 2 or 3 kids had familial dysauto and they were like 8 years old by that point. I wish I had more to offer but I just have no experience with such small children. God bless you MommaC and I hope you get lots of suggestion from others on here that might be more helpful. Just know you are being lifted up and I hope that brings a little comfort to your day! KC
  15. Hey Sallysblooms! I was wondering the same thing. I got a pair of knee high ones and they leave the same marks on me. I can not seem to get them to NOT have that. I have been scared to wear them cause the lady said it should not bunch up anywhere! Let me know what your doc says! KC
  16. Thanks for the reply Tammy! I am thinking I am not going to try it until I meet with her again. I have had horrid reactions to anything that raises my levels of epinephrine so I want to make her aware of that and see how she explains why it would be a good choice for me.
  17. Alicia, I get these frequently and the vary in severity. However, mine are never set off by scents or anything like that. It usually comes from getting chilled. If I get to use the restroom from my nice warm bed type of thing. I would put them in my Top 10 things I hate about dysautonomia! LOL! KC
  18. So far the thought is that I have the post viral type but I really don't know for sure. Somedays I am like I dont care why I have it I just want it to go away but it is important I guess to look at other health reasons that you may have it. I would say the first 6 months were the hardest and it got slowly better from there. I have been seeing a MD here that is also very into naturpathic medicine. When I first saw her she tested all of my hormones. I came back with severely low adrenal hormones. I started taking a supplement she gave me called Cytozyme AD that has natural adrenal extracts in it and I thought it helped alot. I am beginning to suspect that this disorder causes alot of your bodys natural functions not to work very effectively. Were you tested for thyroid issues? Another thing you might be able to get your doctor to try out on you is IV therapy. This is where you go in and get a bag of saline put in you via the drip method like if you were having surgery or something. Some say it's wonderful and they feel so much better for several days afterward. It's worth a shot if you can get your doctor to agree to try it!
  19. If I had a dollar for every time I was told this was anxiety I'd be a couple thousand times richer by now! LOL! I had to have my husband start going with me and he would get really stern and say my wife is not depressed and the only thing she is anxious about it that she feels like she's going to keel over and die you idiot! It wasnt until I saw my new cardio who is very experienced and studied with the infamous Dr. Blair Grubb in Ohio that I was validated. She flat out said this is all physiologically induced not the opposite. You know your body better than anyone and I think the average person knows that it's more than just anxiety. I would tell my docs that it happened in the shower, it happened when I ate, when I went to the bathroom, when I would get cold and the list goes on and on. They just didnt know so it had to be anxiety. And to be fair the them it does present like a bad case of stress or anxiety but if they really listened they may just realize it doesn't sound as typical as they think. Your symptoms are like hundreds of others on here. I have a lot of the same symptoms too. If I exercise I will shake very badly afterward....it's so frustrating! What got me about your list is the cheeks twitching when you smile. I had that going on a few years ago when I took a medication intended to reduce my anxiety. Now I know it wasnt anxiety to start with it was the beginning of my dysatuonomia. I am 2 years into my time and I will say that it has gotten better and I take no medications as of right now. Some info you read says some cases of dysauto resolve on their own over a 2-5 year period. I am hoping that is my case. Did your Mayo doctors say if they knew the underlying cause of your POTS? That is asked alot on here. I am also wanting to know if there is an underlying cause or did I get this from a viral source. Anytime you think of something just post it. They are really good on this site and will answer alot of your questions. It is so comforting to just know that someone else in this world knows exactly what you are going through. Friends and family can be comforting but they really have no idea what it's like 24/7 to feel like we do. When you feel bad just lay down whenever possible. It's annoying I know...you have a life and you're thinking "what the **** POTS do we really have to do this right now?" but it's important to give the body what it's asking for. Also try to avoid getting sick if you can. Viruses make you feel worse....so does the dentist! (I just went so it's fresh in my mind Some people are sensitive to the numbing shots that have epinephrine in them). Ok I have really rambled on...sorry about that! Have the best day you can and take care of yourself ok? KC
  20. Hello DunkyJ! So sorry you are having to deal with this! It's very draining on every part of your life...especially in the beginning. I started out like you too. Just a few odd things happened and then it was fine then a year or so later it really flared up after accidentally taking my sons ritatlin in place of my thyroid med! That sent my ANS into overdrive and I have never been the same since! You are steps ahead by having gone to Mayo and being a physically fit person. Keep trying to exercise at a comfortable level for you. My cardio says strengthening the leg muscles will help with the pooling but I'm assuming you were pretty muscular to begin with. Have you read the what to avoid/what helps section of DINET. It is very helpful. Hydration is crucial with this condition. Alot of us drink sports drinks in addition to using alot of salt to help raise BP. I'm assuming Mayo told you that. How long have you been on the midodrine? I have read that alot of people have a hard time with the meds and just choose to live med free. Sensitivity to meds is very common! I hope you get some relief soon...I know all too well how scary this can be and you just so desperately want it to just go away. Keep fighting! KC
  21. I'm just wondering how the CoQ10 gives you energy?
  22. That is so distressing TeaRose! Some doctors think they are God therefore get upset when you start referring to the Ultimate Physician! You did good by sticking to your guns and I'm so glad God gave you the inner strength to deal with all that. Praise the Lord! KC
  23. Jenny, I will send you a friend request on Facebook! KC
  24. Jenwic- I so feel your pain...as many on here do! It's so frustrating trying to plan your life around this. I am often set off by sex and it drives me crazy cause in my mind I want to but then I start thinking about how it will make me feel etc. Morning sex is out...too much other hormones are starting up in the morning! LOL! When I was talking to my cardiologist last week about why the symptoms come when I eat she said it was about blood flow. I told her I had already figured out that big meals and high carb/sugar meals all set me off so I avoid those. In the beginning it would happen with in minutes of eating ANYTHING! I think the ANS gets so whacked out that even the slightest thing like a change in blood flow or even blood sugar rising can really set someone off. I live on protein smoothies! Easy on the stomach! I just wanted to post and say you're not alone and to keep the faith. Are you on any other websites for dysauto/POTS? There are some good ones on Facebook. Hope you can find some peace in your POTS today. KC
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