JanetM

Hi All, Just wanted to post a link to my childrens band! They are only 10 and 11 years old. My 11 year old daughter is the singer and my 10 year old son plays lead guitar!. Check out youTube. Fretz. Sweet child of mine and Fretz seven nation army. Its this sort of thing with my children that keeps me going every day! From Very proud mom!

Hi Tea Rose from a very cold and frosty Dublin! As you will recall from my last posts I have been dealing with this since before christmas. I have still to get an apt with doc but in the meantime, having searched this forum have come up with and tried a couple of things! My Hot tingles seem to come with a surge in BP (170/80 this morn). So initially I was taking a 5mg dose of inderel. This helped but of course when my BP drops, as it always does mid morn, it was dropping way to low! Have started taking Zyrtek 5mg. This also seems to help. I am convinced I now have MCAD. Do you get any other symptoms like hives or itching? I seem to get maybe just 1 or 2 hives and a bit of itching. Have had a pots dx for 5 years and never had these symptoms before. Like you I am not at the menopause age yet and I dont think the hot flushes we are getting are quite the same thing. I am hoping that I get an appointment soon for my doc, but I dont think he is an expert by any means in Pots or anything related to it. Have decided to look to the UK if I cant get what I need here in Ireland. I know these feelings are scary when they happen but I have found mine are 10 times worse if I get anxious about them! I hope you feel better soon and would be really interested if you come up with anything else that helps. Sending you my very best wishes x

Had a good old cry this morn for all the worlds wrongs! Children finished school at noon today for christmas holidays but my mother in law here with me so Lay down for an hour. Didnt sleep but feel bit better from it. Still house bound and pretty much sofa bound! But happy having my excited children around me. We still have santa cluas so you can imagine the excitement. Tylenol is not available in Ireland. I think it was taken off the market! Hope your day is going well and glad you got some rest. x

Hi there. If its any comfort, had a rotten night myself. You ever try sleep meds? My doc gave me some this week becuase I was so exhausted. They give me a couple of hours sleep but am concerned about the effects it may have on my condition. When I lie down, Even with head raised I feel sick and start to get really shaky all over. Pity we are on such different time zones or we could have a good cry together during the night! Doing lots of it this morn and shall dedicate a tear to you! Hope you feeling better today and you got some sort of sleep. x

Again I just can't thank you all enough for your help and support. Have been having a diet (when I am not feeling sick!) of fruit smoothies and veggie soups with some chicken. Have eaten nothing much else really. Will def have a serious look and overhaul of my usual diet! Saw my general practioner today who tried to get my cardiac specialist to see me but he is on hols since last fri for christmas. This little country shuts down for two weeks! Next clinic not til mid january! Anti sickness meds seem to be working and also a small (5mg) beta block seems to be keeping heart rate lower. Managed a shower today but thats as good as it got! Missing out on my three childrens various concerts and carol services as cant stand for more than 5mins without symptoms. Thank good for camcorders! Wearing Hose which help with heavy feeling in legs. Feeling little more human today! Alot of which comes down to having the support and advice from you all. THANK YOU. I know you all relate to times of feeling lonely and frustrated! May I say to you all now a very happy christmas and a peaceful, healthy, hopefilled new year from a cold and frosty (but beautiful) Dublin city Thank you all x

Thank you all so so much, It is so nice to not feel so alone. I am not near menopuse age yet! Guess thats one to look forward to! A huge thank you to all on this site. Any helpful information I have ever got has been from you all. I have started taking anti sickness meds which seem to be helping a little. Heart rate was 165 this am but gone back to 115. My Blood Pressure normally 90/55 ish is a very high 140/80. But again this changes hour to hour. In the past my symptoms have only ever been low bp, high hr, bit dizzy, cronic fatigue. These symptoms, V high hr, high bp, feeling like throwing up, shaking all over, weakness, flushing are all new! Scared by them. Seems I have a mild chest infection, according to doc. Would this do it? Even though I have had mild infections before and never felt this bad? Would iv fluids help? Does this mean my condition has gone to a new level? Very sadly, Ireland has no specialist in this field and I know you can all relate to the "its all in your head" type of doctor. I am so so sad at the moment and lonely and scared. My three beautiful children and husband dont deserve this so close to christmas. Thank you all so much and I hope today brings good times to you all x

hello all, Long time since I posted but really need help. So Ill at the moment. Heart rate reasonable (115 when upright) and bp higher than its ever been (130/75) but changes from minute to minute. Constantly feel like throwing up and have these mad surges of heat going through me. They are not all over though just my upper arms and across my back. I have 3 young children here and am struggling to cope. Mad tremours, hot then cold, Constatntly peeing! Feel so so bad. Can someone, anyone Help? Never had this before. Week long now and no improvement. cant eat cant sleep. Went to hospital. They suggested its anxiety! Help x x x x

Heart felyt sympathy on your very sad loss. Irish Eyes

Hello everyone and greetings from a warm sunny Dublin (HORRAY), I have just been through the worst 3 weeks ever. Was taken off bete block and had a hard time. Heart rate up to 154, Severe back/lung pain, not being able to breath propperly and all the usual POTS stuff! What did strike me as odd, and it always has since I was diagnosed is that I am more likely to suffer symptoms when I sit or lie down. If I walk around all day I am never going to have near syncope but as soon as I sit, bang! I do experience tachycardia when upright but also when I lie down! Does this not contradict the principal of POTS? Is it a bp problem, as I do have big drops when I sit/lie? Please excuse me if these seem like silly questions but there is no POTS specialist is this country so its hard to get the anwers I need. Am now back on beta blocker and beginning to emerge from black hole! Thanks as always to you all for your help. Have a great weekend. Its a long one here and the sun is shining. Heaven.

Hi Tammy and welcome. I have just started to come out of a really bad attack that has lasted 3 weeks. It has been awful. I would discribe it as internal shakes with severe pain in my lung and chest area, rapid heart rate of up to 164 etc.. I hope you get some answers soon and find something that helps. With me its rest rest and more rest that seems to get me back on my feet. Best of luck and keep us posted on your progress.

I am suffering so bad at the moment. It feels like an elephant is sitting on my chest. My bp is reasonable 90/51 and my heart rate is good (75-80) so I can't figure it out. I also get it with bloating and can go up a whole size in clothes when it happens. This for me is the worst symptom of POTS. The pain just wears me out even more than normal. Unlike you I get this and it lasts for a long time. Have had 3 weeks of it now. keep saying tomorrow will be better... feel like orphan annie. "the sun will come out tomorrow". I find lying down can help sometimes. Best of luck. Will be thinking about you and nice to know I am not alone in my misery!

Hi, Is great that you have been doing well on it. I had a bad reaction to it, which was very dissapointing at the time because I saw it as a lifeline. The problems I had mainly were headaches and shakes/tremors. My headache was so bad that I walked around with my head in my hands. Equally though it could be caused by it leaving your system. If you feel good when on it, chances are it does agree with you. I think! Anyhow, none of this is probably very imformative but I wish you the best of luck and lots of good days. Having some really bad ones myself at the mo!

My prayers and thoughts are with you and all your family. x

MY GP told me a good way to know is by your pulse pressure. If you have to feel hard/press hard on neck or wrist to feel it and if it is weak it is generally a sign of low BP. Whereas if your pulse is very strong it is generally higher. Obviously this method does not give readings of what it actually is but might help you find a pattern to your symptoms. The rate of your heart stays the same but the strength of your pulse changes. Hope that makes sense ! Agree also that most chemist shops will do it for you. Good Luck.

Thank you all so much for your replies. Shall take on board all that you have said. Am beginning to feel a bit better. Virus is finally starting to go. Still have a lot of pain across my back. Have increased lexapro. Going to leave pill until I feel well again . My very best wishes to you all for your support and knowledge.

Hope your now feeling a bit better. I don't always get a high heart rate with low BP. In fact am more likely to feel ill when my heart does not compensate to some extent for the low bp. Be interested to hear other opinions. Also My BP seems to drop alot when i lie down. Does this happen to anyone else I wonder ? Take care and hope midodrine works. x

Oh Pet I know just how you feel. Their is nothing intimate about our relationship any more. I feel I am such a burden now. He is an incredible dad and works hard all day to support us all. But I do feel I get no emotional support. Other than how are you today? and I get so sad when the answer is almost always the same! I don't feel he has ever done enough or read enough to understand this condition although sometimes I wonder if he is scared to. We have been together since the age of 15, we have grown up together. He is great at the practical stuff like the housework but sometimes I would rather have a hug than a clean floor. Isn't it sad how much this condition has taken from us all. My very best wishes to you and sending you a hug. x

Hello and Welcome, Try clicking on the "meet others" heading on DINET. They sent me a list of people I could contact and I found a lovely lady from Ireland. Good Luck and hope your doing good today.

Hello everyone, Went for my usual cardi visit early last week and Doc (who is not a POTS specialist, none in Ireland) decided, with my consent to start weaning me off beta blocker, inderal 10mg twice daily. Because I had been doing "well" he wanted to see if I could mange without them or only use when needed. Has anyone else ever done this? He also decised to increase my Lexapro to 10mg a day from 5mg. When I left his office i begain to think that was a pretty stupid thing to do. How will I know if one action is not agreeing with me when i am doing two. I skipped one inderal a day and didn't increase lexapro yet. Have felt Soooooo ill since. Throw in a virus with sore throat and glands etc and you get the picture. I had really bad shakes within a day of stopping one tab. Is this withdrawal ? Should I ride it out? my heart rate and general POTS symptoms (elephant on chest, full lungs, migraine etc) have worsened but that could be because of virus? Is it just bad luck that it all came together? I am so confused ! My plan is to stick with it for another week, assuming virus is in the most part to blame. Anyone any other suggestions? No point is going back as I will be told "its up to you to decide". Also considering going on pill to have a break from that horrible pre-menstural week, bue not sure now if thats a good idea with all this going on? HELP ! Feeling very down and lonely. In very dark place at the moment and could do with some support. Thank you all so much in advance ! P.s. Still raining in Dublin. Can someone ask God to turn off the tap!

Hi, I had a bad reaction to it unfortunately as I was excited about its promises! I suffered severve migraine headaches. I lwalked around with my head in my hands crying. I also had a lot of tremors. I seem to be very senstive to most meds. The best of luck with it and I hope it works for you. Keep us posted.

Hi Nadine, Welcome! This really is a great forum. So informative. I have learned more from peoples posts on Dinet than I have from any doc. Its also a nice feeling to know your not alone. I have also experienced this type of ear pain when flying. I found moving as far away from the engines as possible helped for some reason. Look forward to reading your posts. Take care and hang it there.

So sorry to hear your news. Sending prayers your way. Keep your chin up. I agree about the flowers. easy enough mistake with emotions so high.

Again just want to send you all the luck of the Irish. As you begin your recovery may the road rise up to meet you.

Greetings and thank you both for your suggestions. Had a visit with my cardio yesterday and talked about my going on the pill. He was fine with it but afterwards i was thinking is it really ok. I mean if you suffer from blood pooling would this not be a concern for clotting ? Kinda confused about it now and not sure what to do. He told me to go talk to my GP about it as it was not his field! Unfortunately my gp will tell me POTS is not his field! Also due to have surgery in October so reckon I would need to be off it then ? I shall take all your suggesstions on board. Its great to know that I am heading in the right direction. I agree about the exercise. Some days all i can do is the school run! Thanks again.

Hi My Cardiologist explained my morning sickness as a result of low blood pressure. As our blood pressure is naturally at its lowest then. I have found that some light exercise, try going up and down the stairs, helps. He also pointed out that we need food and fluids to get blood pressure up so not eating will only make it worse. I have taken to having a small glass of fruit smootie in the morning with my usual water and it has helped. Hope this helps. Good Luck.