suziebear

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.

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.

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.

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.

No one at all ??? :-(

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.

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

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

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

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

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.

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

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

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.

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.

Hi everyone, I have been given Mestinon 60mg twice a day to try for my POTS after florinef failed. My main problem is the dizziness, tachy and shaky feelings. I took the first tablet and I do think it helped with the dizziness a bit. It did however cause a little muscle twitching (my eyelids) shortness of breath and excess saliva. Also a bit of pins and needles in my hands / feet but I do get this on and off anyway. I also think it helped a little with my vission. I spoke with my neurologist who told me to cut it down to 30mg twice a day. I have done this but don't seem to get the relief I did with tht 60mg and no side effects. I do today though have a really sore throat and a burning liquod feeling in my throat (yes a very hard one to explain). I don't know if this is just the start of the flu or mestinon related. Can anyone who has tried this med at any stage in the past please share you experiences with me. Good or bad. I am desperate. I need a med to help me as my poor kids are the ones missing out while I try and get well enough to function. My body never does well on meds so I am really desperate to try something and would appreciate you all sharing your stories and experiences with me. Or if you have any advice for me on my situation or meds, please share. Thanks so much for all your help. Suzie

Ok ... So another stupid question ... I am full of them. I have struggled badly all day with dizzy spells, headaches and a funny pins and needles in my head (or at least the top of my skull - While I think about it - Does anyone else every feel this tingling feeling in the top of the skull?). anyway tonight I had a very short and brief extreme dizzy and hot spell. Took my blood pressure and was 143/103. I am normally a 120/70 lying and sitting person and it only slightly drops when I stand and goes back to normal pretty quick. I have since taken it a few times and it is still up. (even after lying down) Was 120/96 then 143/88 then 139/92. I rang my GP (oops yes I rang at 9.15 at night) but he patiently told me I was fine. It would not be dangerous in any way. I still am very dizzy with pressure in my head and quite sick and shaky (and well plain old scared as I feel so sick). Does any of this sound in anyway familar to anyone out there? I would really appreciate your replys ... please??? Cheers Susan

Hi, I was induced to have my little girl on the 11.11.09. (4 months ago). I developed POTS after the birth of my son 5 years ago. My induction went really well. They started at 7.30 am by breaking my waters then started the drip straight away. I had an epidural approx lunch time and Tamika was born around 3pm. The whole process went really well. My blood pressure was very stable throughout the whole labour. The only time I really had problems with my tachy and symptoms was the 25 min shower I had mid morning to try and help with the pain. Though heat always makes me a little worse any way so to be expected. Other then that, in all honesty was a much better birth experience then my son 5 years ago. Good luck for tomorrow !!! I will keep you in my thoughts but in all honesty I really enjoyed the experience and my POTS was very stable throughout the birth process. Let us know how you get on. Cheers Susan

Hi, I am sorry for asking another really stupid question. I have read the info on the dinet website and everywhere else I can find in relation to symptoms, but I am still confused with mine. I get a strange lightheaded dizziness that I struggle to describe, problem is I get it without the tachycardia. I can be sitting perfectly still relaxing, or at the computer working or just driving along and out of no where I have these strange very intense sudden lightheaded dizzy feeling. I take my pulse when it happens it is normal, not racing, or elevated sitting around the 85 to 90 which is normal for me sitting down or relaxing. I also at other times get these funny flushes where my chest (what seems like on the inside) first gets hot then the rest of me. I was diagnosed with POTS following a tilt table test. I get other symptoms at time, gastrointestinal, headaches, glary or blurred vision, pins and needles in my feet or left leg in particular, chest pain and shortness of breath. I also get a different dizziness where all day I am slightly lightheaded and off balance. This sounds so strange but it feels like I am walking but there is a heap of pressure pushing my body to the side. I mentioned that one to a doctor to be told that it was ridiculous and I was making it up. Just wondering if this fits in with anything else that anyone else is feeling? Or if at all possible if some of you could try and describe your symptoms to me? How they make you feel physically and emotionally? I am really struggling with the physical symptoms of this and well honestly, really quite scared. Thanks for you help and support Suzie.

I am holding out alot of hope on an appoitment in 3 weeks with Dr Stephen Pavia. He is my last hope. Just wondering if anyone might have seen him before and can let me know what he is like and all about? He was at the Cleveland Clinic in the US a few years ago and is now with Heart Care Partners in Brisbane at the Wesley Hospital. I would really apprecaite any feedback anyone could provide both good and bad. Thanks in advance Suzie

Hi, Thanks so much for your reply's. Reading them is very interesting. I am trying to increase salt in my diet and also fluids. I have not tried the energy drinks as my body does not do well on any preservatives or medications at all. But after reading so much about them on here maybe I should be trying them. I will try the florinef. Just need to get brave enough to try day 1. I look forward to hearing from you all and staying in touch. Once again... Thank you all. Cheers Suzie

Hi everyone, Thanks so much for your replys. I really apprecaite them. I am feelig a little more positive now. I see the surgeon next wednesday so will get a date then. Thanks again so much and please keep replying. Cheers Susan

Hi, So I am looking at having elective surgery done in about 3 weeks. Is something I have wanted for years and would really like to go ahead. BUT... How is the surgery going to effect my POTS in particular the aneasthetic and the recovery period? I am stressing about it and just need to hear stories.... Thanks Susan

Hi, Well I am a little lost. I have a neurologist who diagnosed pots after a tilt table test and a cardiologist who put me into hospital and monitored my heart for 24 hours and says I definately do not have pots. GP ... Well they don't know who to believe. I have been doing my blood pressure and heart rate every morning as soon as I wake up before I get out of bed both lying then standing. So lying it is always 115-120 on 68-75 with a pulse of 65-73. Then when I stand at 1, 3 and 5 mins my blood pressure drops to 97-103 on 60-72 and my pulse jumps to 104-120. I also see similar results during the day if I do it but just not as great a jump. Can anyone tell me if this is a pots style of progression? I am seeing a new cardiologist but can't get into him till the end of February. His name is Dr Stephen Pavia. He is now back in Australia but was at the Cleveland Clinic for a few years. Has anyone else seen or heard of him??? I really need to find someone with patience who will help me. I need to try and look after my children. Or can anyone recommend a POTS cardiologist in Brisbane? Anyway my GP wants me to start the florinef. This is really worrying me. My body does not react well to any medication. Ever. My fear is - every now and again (like this morning) my blood pressure will be high. Not ridiculously high but not reason (no exertion etc) will be up to 140/90. If I take the florinef which if I have researched right should increase my blood pressure what happens to the times when it is high allready? Will this make it 100 times worse or be dangerous? This is really stopping me from starting the drug that may hopefully take away my dizziness which I battle every day. What is everyone elses experiencse with florinef? Sorry for rambling. I am just really struggling with the diagnosis, then having it taken away, then being told take the drug, but the unknown. I would really appreciate all of your help and support. Thanks a million in advance. Suzie. Lost in the Australian system somewhere. P.S. This has been going on for 5 years ever since the birth of my son. I also had a baby girl 9 weeks ago. All the symptoms got worse in my pregnancy and have been worse again since the birth.

Hi all, I am newly diagnosed by my neurologist with POTS following a tilt table test. I saw a cardiologist for the first time 2 days ago and she does not believe i have pots as when she did lying down to standing up blood pressure and heart rate it only slightly elevated the heart rate despite me getting symptoms. I have tried this at home many times in the past and my heart rate was always increasing. Tonight we have just done the lying down to standing up heart rate and blood pressure 3 seperate times over an hour and again my heart rate is only going from 66 to 78. It used to jump to around 110. I am being put into hospital on Tuesday for 24 hour monitoring and blood work as she wants to say I don't have pots. So my question is ... Has anyone with POTS ever had it that you can stand and not have an increase in heart rate occasionally? Or does it have to be every time? I have been sick now for 5 years and was praying to find out what was wrong. Now I am back to thinking I have no idea again. I would really appreciate any advice anyone could share with me. Thanks in advance. Cheers Susan