katcanny Posted November 11, 2016 Report Share Posted November 11, 2016 Hi all, I am a new member and have recently been diagnosed with POTS. I am 32 and a mum to a very busy 10 year old. I am very symptomatic but not sure if my symptoms are atypical and as I am still waiting for further tests I thought I might get some feedback from people that have experience or knowledge that I lack. My worst symptoms are chest pain, heart rate rise and what feels like adrenaline rushes in the evenings leaving me tachy and feeling week and shaky to conclude a lot of palpitations and brain fog when driving. Any thoughts or comments will be so much appreciated Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted November 11, 2016 Report Share Posted November 11, 2016 Hi, katcanny, welcome to DINET! A lot of patients describe the symptoms you listed above. This is a symptoms list from the dinet.org site, yours are listed here: http://www.dinet.org/index.php/information-resources/pots-place/pots-symptoms I hope the tests all turn out alright. Have you tried non pharmacological measures yet to see if it helps your symptoms, like Increased fluid/sodium intake, compression socks, or elevating the head of your bed? Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 11, 2016 Report Share Posted November 11, 2016 Hi katcanny, Unfortunately, what you describe is fairly typical of what many of us experience. While you wait for additional information from your doctors, there are some standard lifestyle changes that many of us use: salt loading, fluid loading, wearing compression stockings, meditative breathing to help get through the adrenaline rushes. Hang in there! Quote Link to comment Share on other sites More sharing options...
katcanny Posted November 12, 2016 Author Report Share Posted November 12, 2016 Thanks SarahA33 and Katybug for the replies! At the moment I am increasing my salt, having 2 litres plus of water per 24 hours, sleep elevated on pillows and wear my compression stockings every day without fail. I have been put on Florinef the doctor decreased my dose to half a tablet this week as my blood pressure was maintaining from sitting to standing but was a little high for my age. I normally have blood pressure on the low side.y main cause for concern is the chest pain and feeling out of it at certain times of the day. I am scared to be home with my son on my own incase something happens I have been lucky I am only pre syncope I have never fainted in my life and it scares me to think it could happen. Are there any other tips or tricks to get rid of brain fog and chest pain? You have both made me feel so much better with your replies thank you so much Quote Link to comment Share on other sites More sharing options...
Katybug Posted November 12, 2016 Report Share Posted November 12, 2016 (edited) My chest pain has only been improved by different medications. I am not currently on all these (because I can't take some of them at this point due to allergy issues) but meds that improved my chest pain were metoprolol (beta blocker), verapamil (calcium channel blocker), and mestinon. I used to hate the chest pain because it was scary but I think over time, I became mentally adjusted to it. I personally take some supplements that help me a bit, although they are no miracle cure, with energy and brain fog but I would encourage you to consult your doctor before trying anything new. I have had some success with CoQ10 and a really good B-complex. Some take B12 which I tried and didn't find much benefit (even from injections). But I happened across an article that talked about the fact that many with B12 deficiency also have other B vitamin deficiencies but docs don't generally test for the other ones. My doc told me it was ok to try. I found the B complex more helpful. I also have a lot of inflammatory issues which we can't explain. When my inflammation is flared so is my brain fog, so I have found a tumeric and ginger supplement helps my inflammation and symptoms that come with it. I also find playing games that help with neuroplasticity such as memory games, simple addition/subtraction /multiplication, crosswords, word finds, spatial recognition, really help keep my brain sharper through the brain fog. If I skip a few days of doing these types of exercises, I can really start to feel the fog rolling in. It took me about two weeks of consistently doing these exercises to feel like it was making an impact. Even spending 10 minutes a day on this seems to help me maintain a higher function. Hang on there. It will take some time to find the things that will work for you as we're all a bit different with this. There will be some trial and error. Edited November 12, 2016 by Katybug Quote Link to comment Share on other sites More sharing options...
katcanny Posted November 12, 2016 Author Report Share Posted November 12, 2016 I found out I was vitamin d deficient before my diagnosis and was checked for my other vitamins but I will have to double check with my doc if vitamin b was tested for. I am currently waiting for an echocardiogram in two weeks and looking forward to that so I can rule out any heart problems, I have had chest X-ray, multiple ECGS, holter monitor whilst in hospital but unfortunately I was admitted to one of the worst hospitals around here and I couldn't get a bed in the cardiac ward but ended up on the surgical ward so I only saw my cardiologist once a day very briefly. A lot of my questions went unanswered, I don't know how other people cope with having this and raising children I'm finding it very scary I don't want anything to happen and my child be exposed and scared if I faint/pass out. Do you have children? Quote Link to comment Share on other sites More sharing options...
Roxy Posted November 13, 2016 Report Share Posted November 13, 2016 This is what worked for my family. We explained to our children about my medical issues at a level they could understand when they were younger. They are now grown and when we talked to them a few years ago they said they were more worried not knowing what was going on. They said that they were imagining worse things not knowing. I write down any questions I might have before my appointments and i actually record my appointments if I don't have someone else with me, that way I can go over it later (brain fog issues). Depending on your doctors sometimes you have to press them for answers, you have to be your own advocate, that can be hard, it was for me. All I can say is take it one day at a time, and the people here on the forum are knowledgeable, caring, supportive, and great listeners. Quote Link to comment Share on other sites More sharing options...
katcanny Posted November 13, 2016 Author Report Share Posted November 13, 2016 Thank you Roxy ?, i am trying to learn to deal with the effects and that every day is different. I have always been self sufficient not relying on many people other than my own mother and going from that to being scared to be alone with my son is a massive change to my personality and pride. I have a mild form of OCD I'm sure that hasn't been diagnosed and not being able to do my daily rituals with cleaning some days I have pushed myself because it stresses me when something isn't done and then the stress and over exertion make my symptoms worst! I get angry that I was the healthiest I've ever been and this has happened. I have bad days but try to be positive and am forcing myself to work to take my mind of it. It makes me so happy to talk to people on this forum I hope I can help out too even though I don't know too much at this point. ? Thanks for your reply Quote Link to comment Share on other sites More sharing options...
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