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About suziebear

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  1. Wow - I found your posts really interesting. My daughter who is 14 months old is severly allergic to milk as well. Though I am a HOPELESS cook and even struggle with recpie ideas. It would be fantastic if you are compiling them for your son if you would share them with us as well. I am thinking alot of food intolerances are wrapped up with my POTS so I would really appreciate any food ideas you have.
  2. Hi again, I am on a downhill slide and trying to figure out if it is just POTS or is there something else going on. Has anyone ever had a strange feeling like they are moving a little while lying still. Sounds crazy I know - is not like big movements but when I lie / sit or stand it is like my body does this thing where it feels like it is moving a little forward, then a little back, then a little the other way. I keep calling them dizzy spells but I guess they are not so much a dizzy thing. Is kind of like a preasure thing as well cause I keep getting pressure feelings through my back / neck
  3. Thanks so much everyone for your replys. I really appreciate it !!! Friedbrain - Can I ask what AED you take? I am about to start inderal to try and help with the migraines (saw the neuro on Friday) - Questioning what it will do with my BP though. Also if the inderal doesn't help we are talking of trying Topamax. Yep another road of trial and error drugs - fingers crossed just not too much error. Meds do so many horrible things to my body but what to do. Dana, there was a bleed following the delivery of the placenta and also retain product that was removed about 3 weeks later so I am off to l
  4. Hi everyone, Hope you are all doing well. As many know I have had POTS for 5 years now following the birth of my son. It has become alot worse when I became pregnant with my daughter who is now 1. I was slowly getting better and trying my best to stay positive. About 3 weeks ago I began getting migraines with neurological auras involoving my vision etc. Since this started my POTS seems to be getting worse day by day. I have been taking pain killers for my migraines and that takes the headache etc away but my pots is still getting worse by the day. Dizzy spells like never before, shakier stan
  5. Hi everyone, A random Q but I am starting to get really scared. I have been diagnosed with POTS and been treated for it for a year now. I am currently not on any medication as I just can't seem to be able to tolerate anything. Very normal for me. I am extremely senstitive to medicaiton. I have been having these attacks / episodes that are becoming more frequent and was wondering if anyone else had anything at all similar. I will be sitting doing something, computer / TV / reading / nothing at all even and out of no where have a bad chest pain (or at least worse then the rest of the time). Fr
  6. Hi Jodie, (and everyone else) I am also a young mum from Australia - Brisbane to be precise and I too suffer from POTS. There is actually a few specialist in Brisbane who specialise in Dysautonomia, NCS and POTS. The Royal Brisbane Hospital Neurology department have a Autonomic Function unit that perform all the Autonomic Function Testing that is avialable overseas and in Victoria. Depending on if you are private or public who to see. Dr Rob Henderson runs the Autonomic Function Clinic at the Royal Brisbane and Womans Hospital. You can see him as a private or public patient. He has written r
  7. Hi all again, I have mainly trouble with dizzyness, shaky feeling and a spacey head. I so far have failed with florinef, atenolol, inderel and mestinon. My cardiologist today gave me a script for ivabradine. I have so many problems with medication side effects and he told me this drug basicly has no side effects and is very safe and easy on the body. He also says it won't drop my blood pressure like the beta blockers do. Just wondering, hoping and praying that some of you may know some info on this med or have even tried it. I really appreciate all your help and advice. Cheers Susan
  8. Justine, Thank you so much for your reply !!! You will probably never know how much it helped me and hit home at the right moment - right when I needed to know I was not alone. Your reply was so well written and as much as I wish no one else in the world had to go through what I am going through, It does help to know I am not alone. Can I ask, the Atenolol - did it drop your blood pressure when you first started taking it? I only ask because every time I take one it seems to drop my blood pressure to around 80/50. The doctors have told me to keep taking it and after a few weeks my body will a
  9. Hi, Again !!! I have been having a really bad few weeks. My blood pressure is a little lower then normal - not low but just low for me (90/60ish). I keep getting this really bad internal shaky / tremoring feeling. It starts in my chest and goes through my whole body. I do not physically shake - but feel as if I am inside. With this comes on an electric feeling in my whole body. Like I am having a shaky electric current feeling. This is a scary feeling but I can cope with this. But then on top of this I was getting these horrible spells where my chest gets buring hot and I have an intense diz
  10. Hi, I am from Queensland. About an hour north of Brisbane. I too have often wondered who else was in oz. Hope to chat with you all. Please add me to your facebook if you are on there. Susan Donald. Cheers. Susan.
  11. I am so confused and really hoping that someone out there can possibly help me. I have started once again taking Florinef. Twice a day since Tuesday morning. Yesterday we added a beta blocker with it. This dropped my blood pressure so we never took another one. Now approx 40 hours later, my blood pressure is lower then it has ever been in the past. How can that be? The only medicaiton in my system is florinef, 0.1 twice a day. I was under the impression that Florinef was supposed to raise my blood pressure. But now it is only 96/64 and consistantly sitting around that mark both standing and s
  12. I am very interested in hearing what medication may have helped you all with your POTS and / or symptoms and what medication definately did not? I have tried Florinef and did not see any improvement. I think I have had a little help with Mestinon however. My neurologist is talking about putting me into hospital this week for a few days to just try a heap of meds out in a safe and controlled enviroment where I don't have to worry about side effects and bad reactions. I would really like to hear from as many people as possible as to what you take and the outcomes. I am trying to come up with a
  13. Thank you so much for all your replys. Naomi - you have done better at describing my dizzyness then I can do !!! Seriously it was like reading exactly what I feel. My vision also at times on top of the Hazy etc gets like I am looking through a room of smoke. This scares me. Yogini - What medications were able to help you? I would be very interested. Everyone - Thank you so much for replying. You will never know how much help it is to me to hear others understand and I am not alone. Thanks.
  14. Hi again, obviously I am trying desperately to understand pots. Just wondering how many people suffer from dizzy spells and what are your dizzy spells like? Dizzyness is by far my worst symptom. I get dizzy spells even when lying flat. I thought pots was meant to be postural, hence dizzy standing, but I can have just as horrible dizzy spells lying or sitting. Is there anyone else out there who also suffers while resting/lying? How do you deal with your dizzyness? I find mine very scary! Has anyone found anything to help? I am obviously doing water salt and also just started mestinon. I would
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