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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 / head. I also have time when sitting / standing like I am being pulled forward or backward to the ground. I feel like I lean forward or backward to compensate for it. I have in the past 3 weeks had a head / and cervical spine MRI to cheack it out and all came back normal. I have had a MRV and again normal. I have a EEG booked in for Monday but the neurologist is saying she expects it to be normal too. They are saying either POTS or migraine related. I am not on any meds at the moment so can't blame them. I am due to start florinef (fingers crossed third time lucky as the last 2 times it made me feel awful) and then inderal (as this is also a anti migraine med and I suffer from migraines). I am cautious of starting these meds which I was meant to start yesterday while this is going on so badly. This feeling is stopping me from going anywhere and doing anything. There is now no relief. I used to be able to go and lie down and it would all settle so I at least had some relief from dizzzy / woozy spells. But now when I lie down I have this whole new feeling and it really is quite scary. There is just no letting up. Can people also please share with me there experiences on Inderal and Florinef. I have searched the archives and this helped alot but I was just hoping some people would share some more current expereinces as well. Thanks and I hope everyone is having a fantastic day. Cheers Susan.
  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 look at the pituraity (SP?) stuff. Thanks so much for the idea. We are also going to stop the Yasmin birth control I take and try a progesterone only pill or maybe the Proverea injection. Not sure yet. Though a week off the Yasmin now still sees head aches. Doesn't help we are in the middle of a HEAT WAVE and the humidity is a KILLER !!! Once again everyone - Thank you so very much. Susan.
  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 standing up then before, higher tachy, ALOT more chest pain etc etc etc. Just all in all every pots symtpom is getting worse. I can't take pots medication as my body does not tolerate meds well so I normally just smile and try to deal with it. I have had a head and neck MRI in the past week - both clear. All new bloods in the past week - again clear. I am still doing the fluid / salt thing. My question and I am hoping to hear as many good and bad stories as possible, How many other people have had their pots get worse and if so did it get any better again ??? Or does it just progess downwards from here? I just need to know what happened to others. Can anyone give me any other advice. I would greatly appreciate it. My BP is also doing normal things 90/60 through to 110/70 which is pretty normal for me. I would really appreciate any of your stories. Please. Thanks so much for your assistance and support. Susan.
  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). From there I get a really hot burning / flush / hot feeling in my chest / throat / arms / face / head and then it turns into a hot flush. Sometimes I then get stomach cramps (and TMI but need to go to the toilet quite badly), sometime some pins and needles in my hands and always nausea. My heart rate allways increases greatly (this morning to 131 without me moving / standing up etc so not a postural increase) and my BP drops then goes back to normal for me. Not a huge drop - my normal is 90/65 so it may go 85/60ish. I have a hand held ECG machine from Omron and I use this to check what my heard is doing. It comes back with fast heart rate (knew that anyway) but stable waveform so I guess that is at least ok. Then it takes hours to settle down - sometimes not to the next day. These are really starting to scare me. I was tested a few weeks ago for MCAD / Systemic Mastocytosis as part as of my POTS but it seems all the results (from bone marrow biopsy) are coming back normal - story of our lives right. Was hoping someone might have some answers or maybe have had similar things??? If you have every had any episodes even remotely similar to mine can you please share your stories? I am really starting to get scared by these. Hope you are all having great days. Thanks for all your support. Susan.
  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 research papers on Dysautonomia and POTS with Dr Pamela McCombe. Dr McCombe is at St Andrews in Brisbane as well as the Royal Brisbane and her knowledge on Dysautonomia is amazing. There is also Dr Wayne Stafford at St Andrews who is a Cardiologist and Dr Stephen Pavia at the Wesley who is also a cardiologist that both are great for autonomic problems. I am seen by a neurologist and cardiologist and they are just wonderful and work so well together. I am hyper sensitive to medicaitons and really need someone who knows about all this in great detail. I love my team. I also know of others in Brisbane who are also looked after by this team for their POTS. Midrodine is used for POTS. I personally am trying to avoid it but we have been discussing adding it to my medications for a while now. I do know of other POTS patients here in Brisbane who are taking it and swear by it. If you want more info on the Brisbane team feel free contact me. Are you on facebook at all? If so we have a great facebook support group POTS & Dysautonomia Australia. Also feel free to add me - Susan Donald. Hope you are feeling better soon. Cheers Susan
  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 adjust and it won't happen so much. I struggle to take the second day in a row as I am not convinced and it scares me the thought of my blood pressure dropping and passing out. I understand the two lovely children. I too have an amazing husband, 2 wonderful children (5 and 8 months) and all I want is to feel well enough to look after them. It scares me every day taking my son to school that something might happen because of me, or I pass out with my baby in my arms etc. Crazy thoughts but I can't help it. Again thanks so much for the reply. I really do apprecaite you taking the time. Susan
  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 dizzy spell. I get this horrible wave come over my whole body. A wave that I can't describe, kind of shaky, kind of dizzy, kind of adrenaline rush - I know I am not doing a great job of discribing this hey. I also get a tingly feeling in my head that is not quite right. Not painful at all, just tingly. I feel really spaced out when this happens as well. The problem is, this is happening even when I lie down. I am super dizzy standing, I understand this, though my blood pressure does not drop much but my heart rate certainly goes high. I can have waves of all this then I can have times when it lasts all day. Does not come and go but stays there. I am also getting tingly feelings in my body and skin. I understand my headaches, chest pain, dizzyness and nausea are POTS. I can even to an extent put my glary vision down to POTS. But the rest of it. Does this sound like POTS??? Does anyone else get any of these feelings with POTS??? I have given up on the florinef - really did bad things. I am super intolerant of medicines so am struggling to get on anything for pots at all. I am still trying 1/4 atenolol at night (I am scared to take it) and still on 1/2 mestinon a few times a day but this is not helping. Am thinking may need to add the midrodine in but I am worried about the blood pressure spikes and not being able to lie down as when I feel really bad I go and lie down to try and help. Please if this is at all familar, can you possibly share your experience with me? Thanks for all your help and patience. Susan
  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 sitting. I know this is not low in comparison to some POTS patients blood pressures but mine is constantly 110/70 or higher. So why if I am taking a med to raise my bp would it be dropping it? Any ideas at all would be appreciated? I feel awful too. Heart palps, dizzy, weak all the normal. My heart rate is also not increasing to what it normally would. It would normally jump to over 100 and is only jumping to the 80's. ARGHHHH What is going on? As you can tell I am probably slightly panicing. I just want to feel OK again. If you have any idea what is going on or have taken Florinef before, please help me? Thanks Susan
  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 list of things I would like to try next. Thanks so much. Susan
  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 really appreciate any advice anyone has. Thanks!!! Suzie.
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