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