Ianankatie

PS, I'm not pregnant!! (thats what everyone has asked me so far when I tell them that I only have this in the mornings!!) oh and I've started taking my contraceptive pill Microgynon packets back to back on the advice of my gynecologist to prevent pots flair ups at that time of the month so I've not had a period for 4 months, could that be the problem?

Hi all Sorry its been a long time since I've been on here but with an active 8 month old I don't get much chance. I'm hoping you can help. For the past three weeks I have been suffering the most horrendous nausea in the mornings. It has now progressed to include vommiting and diarrhoea and I have had to resort to anti-sickness tablets just to be able to look after my son. I can't cope with this much longer. I started feeling worse with pots following a bad case of gastroenteritus in May when I ended up on IV fluids, but I only started getting bad with the nausea three weeks ago. This was also when I increased my metorprolol to 100mg daily (50 am, 50 pm, previously 50am, 25 pm). I had previously had no side effects to metoprolol and it was working well. My cardiologist initially told me it was problems with my eating and told me to go on a low GI diet. I had been feeling better when eating, mainly sugary things so he thought there was a link with my glucose levels. He said this definately was not pots related. He assured me that a few days building up my slow release carbs and I'd be better. Well I'm worse and I am not convinced he has the correct diagnoses. I also suffer shaking, tachycardia and at times a very fast but weak pulse. Please help, I've had to start sending my son to nursery because I can't cope and if this gets any worse I don't think I'll even be able to get him to nursery! Does anyone have any ideas? I'm seeing my cardiologist later today. Thanks all Katie

Congratulations thats great news! I had my baby last October after many faints during pregnancy. The concern my doctors expressed was that when fainting the baby was being starved of oxygen which could potentially of effected his development. By being very very careful, basically doing nothing, I managed to not faint for the first 6 months (also I felt really good thanks to all of the extra blood you have at that stage). I started fainting when it got hot in about June (I was due 6/11/06, probably similar timing to you?) and was offered meds that I had come off before getting pregnant. I refused and went for the resting option instead. I took half days bed rest each day, not getting up until gone 11am which helped and I managed to last until September before starting on low dose fludrocortisone. I was fine again until braxton hicks started at the end of September, causing me to faint every time. I finally ended up in hospital mid october due to the fainting getting dangerous and Will was delivered at 38 weeks by c/section later that month. He was a very healthy 8lb 4oz, great given that he was 2 weeks early. They kept an eye on us both and took some blood tests from Will to confirm he was fine and we left hospital 4 days later with no problems. He is now 24 weeks old, weighing in at 18lbs and is a very happy healthy baby. My best advise from my experience would be not to stress out, it will only make things worse. And the great thing about the bed rest in the morning was that they say inside you the baby is active when you rest and sleeping when you're moving. They also say that when they are born they keep that routine. Because I rested so much in the day that was when Will was active and he slept at night. Since the day he was born he has been a great sleeper and slept through the night since 8 weeks. I put that down to my rest in pregnancy!! Good luck, if you have any questions feel free to get in touch! Take care, Katie and Will xx

GOOD NEWS!!! Flop is out of hospital and on her way to relax back at her mums! She is feeling better and looking forward to getting home. The results came back from the MRI showing no signs of a stroke, epilepsy or any other nasties, the bad news was that the neurologist she saw was an absolute idiot who didn't believe pots exsists and waned her refering to a psychologist!!! But hay, at least shes getting out! Thank you to everyone who has posted and I am sure that she will be on here herself just as soon as she can! Hope that you are all well, getting back on here has reminded me how good it is and I must make time to post myself more often. Healthy thoughts to you all, Katie x

Hi all Once again a massive thank you for all of your messages. I called in to see her today and unfortunately she seems a little worse. The movement in her hand as become dificult again and her POTs has returned just to make matters worse! She has had the MRI scan and was waiting for the results and to see the neurologist this afternoon. The good news was though that the stroke doctor doubts very much that it was a stroke and the problems with her hand are more likely to have been caused by the fits following surgery. I haven't heard from her this evening which probably means she will be in all over the weekend so if anyone has any more messages please add them on as I will probably visit her again tomorrow. To look on the bright side though, it seams an ambulance driver has taken a shine to her, he visited the first day with a massive bunch of flowers, was there yesterday when I visited and just as I was leaving today he was on his way in again! It looks like a hospital romance may be happening!! Corina, thanks for asking about me and the baby. We're both doing well thanks. I had three pots free months but unfortunately it has gradually returned over the last two, though in no way as bad as before I was pregnant. I had a wonderful pregnancy and although I am sick, being a mother is the most wonderful thing! I know there are some of you out there that would like kids but are concerned about doing it with pots and I would say go for it! Okay, I may not be able to keep up with the other mothers but we have fun in our own way! Visiting Flop is a pleasure, she did the same for me after my c-section... thats what friends are for! Anyway, William enjoys the bright lights in the hospital! Thanks again everyone and keep those messages coming! Katie

Thanks everyone for the kind messages. I visited Flop again today and she is doing much better. Shes had the bandages off her nose and all is well there. She is starting to get movement back in her hand now but is still not sure whats wrong. Hopefully tomorrow she will see the neurologist and get the MRI scan she is waiting for and get some answers. I know that all of your messages are really helping so a big thank you from both of us. I will be visiting again tomorrow afternoon so keep thoses messages coming! Healthy wishes to you all Katie x

Thank you so much for the swift replys. I'm going to look up the hemiplegic migraines now. I will pass all of your thoughts onto her tomorrow, I know that she has been feeling quite down today and I am sure that all of your messages will really help! Lets see how many well wishes we can get in the next few hours to really cheer her up tomorrow!!

Hi all I've not posted on here for some time as I have been a bit busy with my new baby but today I'm posting on behalf of Flop. I hope you guys can help! I've just been to visit her after surgery yesterday and things aren't going quite as well as hoped. The actual op went fine, on the ENT side of things she is doing well. She is even doing well from a POTS point of view too and is up and about on the ward. Problem is somewhere along the line there has been a reaction causing stroke like symptoms. She has had several fits and initially the doctors suspected a stroke though a reacent scan has proved inconclusive. She is now waiting for an MRI hopefully tomorrow to shed some more light on whats happening and is left with little feeling and movement in her left hand (and just to make matters worse she's left handed!!) At present the doctors haven't a clue whats gone on as she has not suffered anything like this before so I'm on here hoping that one of you may have some idea as to whats going on. Has anyone else been through similar? If anyone has any ideas or would like to send any messages to Flop please let me know. I will be visiting her tomorrow afternoon (UK time) and will be online in the morning. Thanks all, I'm sure she'll be online herself just as soon as she can. Katie

Thanks Katherine We are aware that complete bed rest is bad. At present as I am home I am having a combination of bed rest (9pm to 11am) and then the rest of the time resting but up and about to keep me upright. When I am downstairs in the day I sit as much as possible but am currently still able to make myself a drink etc. When I go to hospital they hope to monitor me walking for short periods and after the birth will gradually increase my activity. All of this will hopefully prevent rest induced pots/vvs. Anyway I think I have come to a decision! After resting this week I am not feeling as bad so I am going to avoid meds for another week and then re-assess each week. Hopefully I will be able to put off meds until I reach 30 weeks (2 weeks time) as then I know that he will be well developed and able to survive with help if born. Thanks everyone for all of your help and I would still welcome any new advise! Hope you are all doing well! Katie

Thank you everyone for your replys. It is good to hear that some of you did have success without meds and even though you were unwell your baby didn't suffer. The big concern for my docs now is that my BP is so low that it could be effecting the baby. In the past I have suffered the drop in BP when standing but as soon as I lay down it would go up again. Because it used to go up again we had planned on just using bed rest, therefore preventing the vasovagal episodes and avoiding any risk to the baby. Also avoiding the need to risk taking meds. Now that even in bed my BP often stays low they feel they have little choice but to give me meds to increase it. The problem in my mind is that by taking tablets I know that I am putting my baby in danger but by resting we don't really know, there is a chance that he'd be fine. The docs like the idea of the controlled risk involved with the meds where I prefer to take the chance on no meds and hope he is okay. I am particually pleased to see that one of you managed without meds and although clearly suffered the effects of the condition the baby managed ok. Its all so confusing! I have tried everything to increase my BP that I can without drugs and nothing is working. As for the epidural, I do hope to be able to have one but that is another debate I am facing. I am booked in for a c/section several weeks early as my condition is effected by pain and exhaustion as well as posture and many other things therefore it would be physically impossible for me to manage naturally. As none of my local docs have ever had a pregnant patient before they don't really know what to do and are very wary of giving me an epidural. They would really like to do the c/section under general anaethetic which is something that I am really not happy about for many reasons so I am fighting for an epidural. The tip of epinephrine is great, if anyone else has any ideas of how to manage an epidural please let me know! Thanks again for all of your help! Katie

I have no great tips but I just wanted to sympathis with you- Since having POTs I have had frequent urination but try being 27 weeks pregnant too!! I live in the bathroom!!! Every hour even during the night is the norm for me now!! At least I have some relief to look forward to, I hope you improve soon too!! Katie

Thank you for your story Susan. It is really great to speak to someone who was in something of a similar position and to hear that everything worked out for the best. After having such a great first 2 trimesters I was not very prepared for such a quick downfall! Was there one particular medication/activity that helped you most during pregnancy? Were you put on bed rest or did the medications manage your condition? Did you make it to 40 weeks? Also, I hope you don't mind me asking, but did Abby suffer any symptoms of stunted growth at all and if so how did it effect her/how quickely did she get back to 'normal'? I have been told that the main effect of the medications will probably be stunted growth in my case. I really hope that Abbys suspected autonomic problems come to be just a phase she is going through and she makes a full recovery very soon. I know that before I went ahead to try for a baby I was told that if I was to have a girl she would be very very likely to inheret my condition as I have been proven to suffer from an inherited form of POTS/VVS. It was a difficult decision to make as to whether to take that risk but after long discussions with both my neurologist and cardiologist it was aggreed that it was a risk worth taking. It should be easily treated if they know whats wrong, unlike the years of tests many of us have gone through, and besides, most people don't really suffer until their late teens- by then my docs hope for a cure!!!! Thank you again for all of your advise and I am sorry for all of the questions! Best wishes to both you and Abby! Katie

This has happened to me twice- though not so extreem as the examples given. I am limited to a strict 3 ltrs per day even though I am pregnant. Last summer when suffering badly with pots I drank lots of water as I thought that it was helping but it was all in my head. I was actually damaging my kidneys. Its great that you have brought this to everyones attention. I hope no one else here suffers this summer!

Hi all Just wondering if you can help. I am 27 weeks pregnant and after a great initial 5 months am now stuck on bed rest til D day! Unfortunately after putting it off this long it looks like I have no choice but to start meds on Friday so I am looking for some tips. Beta Blockers have been dismissed as my BP is so low that they would cause growth issues so we're looking at Fludrocortisone but I am really not happy about it. Does anyone have any experience of drugs in pregnancy, good or bad, and/or any experience of coping with the effects on the baby once born. Obviously if the benefits out way the risks I am willing to go ahead but I need more information and I am just disapointed that bed rest in itself will not do the job as I had hoped. Please let me know even if your story is not so positive as my doctors have no experience of POTS/VVS and pregnancy so are looking to find out how others have coped. Your experience good or bad can help me to way up the risks and benefits. Many thanks Katie

Hi I was very interested to reed in this seasons newsletter that research has taken place into managing anaesthetic during labour/ c-sections. I am pregnant and meeting with my anaesthatist in July to discuss options for my c-section and this article would be very useful. Does anyone have access to the full article or can you tell me how to get more information. Many thanks Katie

Good luck for the next few weeks i will be thinking of you!! I don't think we have spoke before but I am also pregnant (though only 12 weeks) so I've been following your journey quite closely!! You have been an inspiration so far and i will definately be keeping my fingers crossed for you on 23rd May! I know things will be really hecktic for you after the birth but if you do get a spare minute then it would be great to hear how you get on! Although a spare minute is probably something that you wont have for quite some time!! Heres to a simple birth, healthy baby and a speedy recovery! Take care katie

Hi Becky Thanks for your message! I had exactly the same trouble as you last year. I was sleeping 16+ hours per day and have been unable to work for over a year so we never believed I'd be able to cope with pregnancy and then caring for a baby. But so far so good. My Neurologist actually reccomended pregnancy for me as a potential cure (although that was not my reason for it as I was already very broody!). Don't give in on the idea yet!! I have had to have a lot of extra help from my hubby but mainly due to awful morning/all day sickness and not being able to cope with the smells when cooking for myself!! I've been in bed by 8.30pm most nights which has been a bit of an inconvenience I sopose as my husband doesnt get home til 7pm we barely see each other but its all worth it!! Since I got pregnant my POTS and VVS has almost disapeared so as long as you have got good support and your willing to put up with nausea that makes you wonder why you ever complained about POTS then it is possible and its great to feel 'normal' again!! Hope things work out well for you too!! I'll keep you updated! Luv Katie

Hi Dayna Although I found the best thing for the lightheadedness was getting my BP undercontrol (it would drop on standing and make me very dizzy) I did find that Prochlorperazine really helped. It was prescribed to me for vertigo but helped with any dizzyness or nausea. You can take it when you feel symptoms coming on which I found better than taking a set amount daily. Apart from that, I know it sounds obvious but gettting alot more rest (upto 15 hours sleep daily) and eating properly really helps. Try eating little and often to ensure you're blood sugars are stable. Another obvious one but avoiding stressful situations helps- I improved after giving up work and although I am not saying you need to go that far, if you just avoid the stress and sleep more its just as good! Good luck Katie

Hi Corey- just a thought- you mentioned self hypnosis. Has your wife tried Tilt Training at home? My Cardiologist swears by it- although to be completely honest I did give up after 4 weeks but I know it has worked for some people. Basically the theory is that if each day (at least once per day) you make yourself faint by standing up for as long as it takes (be it 30seconds or 40 minutes). You must stand compeletly still because any movement can increase blood flow and slow the fainting process which is very frustrating when trying to bring it on. Also avoid distractions such as TV and conversation. If you continue to do this at least once per day your body will re-educate itself to cope with the blood pooling and drop in BP and learn itself how to increase blood flow until eventually you no longer faint. Keep going until you can stand for 45 minutes. At this point you would no longer be classed as suffering VVS/NCS. And bare in mind when in daily life you would also use manovers to help so 45 mins may end up more like 2 hours with apropriate manovers/fluids etc. I did this for 4 weeks and went from a full black out at 3 minutes to 24 minutes. I stopped because I suffer a lot of problems after a black out such as extreem fatigue, constant nausea and vision problems. My quality of life was being effected and I just wanted to get back to some sort of normality. Although it wasn't the best option for me as when I started to improve I no longer wanted to make myself sick it does work for many people and if your wife is really suffering then anything my be worth a try. Obviously be careful that someone is aways there and there is always a soft landing place available. There has been a lot of research into this in the UK which has prooved very successful. Just be aware that if you miss a day, similar to an athelite (sp) training for a race, you will put yourself back to square one. Hope this helps Good Luck, Katie

Thanks everyone, all of this information is a great help! I am seeing my Neurologist tomorrow so hopefully will know more about what to expect then but this is really going to help me to convince my doctors not to panic and let me do what I know my body wants! Katie

Don't be affraid of the TTT. I reckon it is the best thing that you can do to help your treatment for any form of dysautonomia. When you get there if its anything like it was for me it can seam scary. I had to sign a form along the lines of if my heart stops and something bad happens I wont sue them- that really scared me- then you get strapped in which is not pleasant, but it is so worth it. If anything bad does happen (which is very unlikely) you are in the best place. They often take precautions such as putting an iv in incase of emergancy so you really are very very safe. Personally I would much rather have one (or three in my case) really bad black out on a TTT where they can work out the exact pattern of events and teach you how to deal with it than have to find out for yourself at home and possibly suffer some real damage. My second and third TTT were absolutely fine- once you know what to expect they are not scary at all! If you need any tips before you go just ask! Good luck Katie

Hi Stacey I had verigo as my main symptom of pots and vasovagal syncope and it was awful so i can completely sympathise. I found Prochlorperazine worked really well as you could take it 3 times daily or as needed. After just a few weeks it almost completely disapeared and now I only suffer when my pots/vvs is really bad. I too had a whole host of atology (sp) testing to check the causes of the vertigo. Nothing came of it and it was put down to the pots. Be careful if you have the caloric testing (flushing water through the ears). Mine was inconclusive but I have had really painful swolen ears since December where they damaged my ear canal doing the test. If you have it done leave it a week then get your ears checked. They didnt tel me to get checked at the time and my infection wasnt found for 3 months until it got bad. Hope it doesnt come to that. I know vertigo is awful but dont worry, it can just pass I'll keep my fingers crossed for you! Take care Luv Katie

Thanks its great to hear a positive story! My docs also suspect pregncany will help my POTS/VVS so I just have to keep my fingers crossed! So far so good (as long as I am munching on a ginger biscuit and there is always sausages and chillis in the fridge to control my cravings!) Thanks again!

Hi all I'm comming up to 8 weeks pregnant and having to make decisions about the care I will recieve for the next 7 months. I am getting really worried as the doctors that I speak to all go for one extreem or another. They either want me to go natural all of the way, as if I was perfectly healthy, or high risk spending the final trimester in hospital ending with a c/section under general anaethetic. I don't like the sound of either of these options and was hoping that if I could gather some info from you guys (who probably know a lot more about it than any of my docs) then things may go a little better!! I really hope you can take a minute to complete this poll. I know there have been A LOT of posts about pregnancy but hopefully this will make it clear and I can show the results to my doc! Thank you everyone in advance!!! Love Katie

Hi OLL I am only talking from my experience but your symptoms appear to be really similar to how mine used to be. For me the feeling of light headedness and as if I would faint after some time of standing is Vasovagal Syncope (more commonly called Neurocardiogenic Syncope in the US). It is quite different to Orthostatic Intolerance (OI) but alot of people get them mixed up. VVS when your blood pools in your legs (or sometimes your digestive system after eating) starving your brain of oxygen so your BP drops and you black out. If you do certain exercises- sometimes without knowing such as just continuing to walk or moving from foot to foot, it keeps your blood pumping and therefore takes much longer before it pools in you legs and you faint. Orthostatic Intolerance is when your BP/HR drops/increaces immediately upon standing and you feel the effects straight away- such as with many cases of POTS. This can be more difficult to prevent, because of the lack of warning and is more likely to need medications. I have Vasovagal (VVS) along with POTS. This means I can have symptoms of both OI and VVS and therefore two different types of syncope/fainting. Understanding which is which makes it much easier to control. Before my VVS got bad my symptoms would be very similar to yours. I could stand for hours as long as I kept my legs moving. As your condition gets worse your pre-syncope (the faint feeling you get as a warning to lay down before fainting) gets shorter and shorter giving you less warning and you faint quicker and harder. Thats why sometimes when you start on medications you think they are not working because you feel worse (longer lasting dizziness/faint feelings) but actually they are working by giving you more warning and preventing a bad black out. If you have POTS as well as VVS you can stand up and feel as though you will faint but then those symptoms will improve and your increased HR compensates for your drop in BP until it can no longer and your VVS really kicks in sometime later. So what I am trying to say there is (sorry for blabbering on and confusing anything) is that my symptoms came on like yours as my VVS was getting worse. So if you can try to get another tilt table test they will clearly see from there. If it is VVS getting worse there is lots that you can do for it even without medication, especially if you recogise it early on. There are lots of manovers such as squeezing your palms that encourage blood flow and stop pooling. Check out previous posts on Vasovagal Syncope or if you want more info just ask. Another thing that it could be is that you like me have a combination of VVS/NCS and POTS and that would explain the different experiences you are having. Again a TTT would proove this and the symptoms are easily improved if you understand what is going on. I hope this makes sence- I am absolutely exhausted but wanted to reply before going to sleep! I'm no doctor so its all just my opinion Good luck! Katie