AngieP

Hi there, Both my cardiologist and neurologist would like me to build some muscle especially in my legs, so I'm working with a personal trainer on strength training. Before I developed POTS I was an avid runner and always enjoyed exercise. However I began noticing that I would have POTS attacks between two to 24 hours after working out. During training I felt fine, but the nausea, tachycardia, chest pain, diarrhea, shakes etc. would hit me afterwards. For some reason these post exercise attacks also often wake me from sleep. I'm not sure if anybody else has experienced this? Anyway after two years of not training I've finally returned to exercise and I'm experiencing the same problem. So, I guess my questions are: - What causes exercise intolerance? Why am I experiencing these awful symptoms hours after my workout? - If I keep going with my exercise plan will these attacks eventually stop as I get fitter? I'm very determined to get strong as I dropped a lot of weight during my last POTS flare up and felt extremely frail. Any advice anyone can offer about how to cope with exercise intolerance would be much appreciated. Cheers, Angie

I experience this too. I become irritable and very emotional when my physical symptoms flare up. My husband always says, 'welcome back' when the storm is over. It's like I'm another person and I have no control over it. When I was in hospital during a particularly bad attack in 2014, they tested my serotonin levels because they were worried about carcinoids. The tests showed elevated serotonin but thankfully when they re-tested me 6 months later while I was feeling well the serotonin levels had returned to normal.

Hi Evergreen, If I get any answers I promise to let you know. I'm seeing my neurologist on Feb 9th so I will discuss the symptom with her. Sorry to hear you're going through this as well - it's very unpleasant. Take care, Angie

Hi there, One of my worsening symptoms is head pressure and a very stiff neck. In addition to the discomfort it is making me feel anxious as I don't understand what is going on. I have had intense head and facial pressure before and it has dissipated after a week or so - my head didn't actually explode I'm just wondering if I should speak to my neurologist about a possible CFS leak? When I was last in hospital they did suspect EDS Type 3 but I ended up being classified as only mildly hyper mobile (bendy thumbs, tongue that can touch my nose etc.) I also bruise very easily, have scoliosis and was diagnosed with POTS. Also is this head pressure safe to live with? Any reassurance you could offer about this symptom would be very much appreciated - i.e. it's uncomfortable and at times painful but won't kill you. I should add that I have been experiencing hearing trouble when I get this pressure - some sounds get distorted and very high pitched in my left ear. For the last three days I've also had a fluttering sensation on the right side of my head. Thank you, Angie

I've responded really well to Metoprolol. I've been on it since March 2014. I tried weaning off it a couple of months ago and had a major flare up so I've gone back on it - 25mg morning and night. It has improved the quality of my life.

Hi Robstahlobstah, I can relate. During a flare up I experience odd pressure and pain in my head too. Here's what it feels like - - Like a very tight band has been placed around my head - After an 'attack' my head will throb when I stand up and walk, when I lie down it's okay - At times it feels like something is rattling/clicking in my head - it's weird - Facial pressure I'm seeing my neurologist at the start of December and I'm going to ask her about this. If I find out anything interesting I will pass it on. Cheers, Angie

I was given codeine in hospital a few years ago, prior to my POTS diagnosis and my heart rate shot up to 180bpm. It was not a great feeling. At the time my heart rate was already high (120bpm) but I felt the codeine pushed it up.

Hello AllAboutPeace, Many thanks for the links to the articles. It's interesting that Japan has stopped the vaccinations. Fingers crossed they examine the adverse side effects further and we get some answers. Cheers, Angie

Thank you very much ks42. I appreciate you looking into it and will read this article. The onset of my POTS symptoms occurred shortly after my last Gardasil vaccination, so I feel a link is possible. I was also a very fit person at the time - running 10kms three times a week, and it was interesting to see that 3 out of 4 women who developed POTS after the vaccination were highly active according to the documentary. Thank you again.

Hi there, I'm wondering if there are any women out there who suspect the Gardasil vaccination triggered their POTS? I've questioned this for awhile, and today came across a Danish documentary which explores whether there is a link between POTS and the HPV vaccination. The documentary echoes what my immunologist said to me - he can't say for sure that the vaccine triggered my POTS, but it is a possibility. For me, this is not about finding someone or something to blame. I understand that vaccinations cause adverse effects in a small percentage of the population. I'm just hoping they'll look at the link closer. If they discover why the vaccination potentially causes harm to certain women, then maybe they will be able to develop better treatment options for us. I also strongly believe GPs should be warning women about potential side effects even if they are rare. Cheers, Angie

Hi gjensen, Many thanks for sharing your thoughts and advice. I will definitely discuss the pain again with my cardiologist when I see him in a few months. Cheers, Angie

Hi there, Occasionally I wake with chest discomfort/pain around 2am which is a little scary. I find that the only way I can alleviate the pain sometimes is to prop myself up with pillows, so I'm sitting almost upright in bed. Then, the pain will usually subside and I can drift back to sleep. Last night, I shifted back to lying flat and the pain returned once again. It does seem that the propped up sleeping position makes a difference. I was wondering if anyone else has experienced this, and if they know the reason why having your head elevated helps? I should also let you know that my cardiologist has assured me that there is nothing structurally wrong with my heart and that the chest pain is POTS related. Thank you, Angie

Chest pain followed closely by nausea, weakness and anxiety.

During recent flare ups I've been getting a rash on my upper neck too. It's raised and very itchy. My doctor has ruled out mast cell issues as test results came back normal. I don't know what is triggering it. Thanks for the link Katybug - will take a look at this article.

Hi Matt, Just getting in touch to let you know that I totally understand what you're going through. Like you I used to get up each morning and run up and down my local beach. Exercise was a big part of my life. Then, I started getting episodes where I would wake up with sore, heavy limbs and struggle to walk to the kitchen. I'd lay in bed at night with tachycardia and horrendous stomach cramps and wonder what was going on?! The debilitating fatigue, weakness and brain fog would come and go - it was bizarre and frightening. On good days, I continued to exercise - sometimes it would trigger an attack and like you, sometimes I would be okay. I felt like I was going insane. It took me three years to get diagnosed with POTS and I've met some very insensitive doctors along the way. My GP had never heard of POTS - my first diagnosis was anxiety/panic attacks. There is a real lack of awareness of POTS within the medical community. My current cardiologist is amazing - I'm up to my third one. My first cardiologist misdiagnosed me with SVT and wanted to perform an ablation immediately which prompted me to get a second opinion. My second cardiologist worked out I had POTS but was extremely unhelpful - 'consume lots of water, salt and just deal with it'. Thankfully my current doctor witnessed one of my flare ups in hospital and took the time to listen to me. I feel very lucky that I met that man because I was at breaking point. I guess my advice to you is don't give up searching for a doctor that will give you the care and treatment you need. My cardiologist put me on a beta-blocker and it has helped a lot. He also organised for me to see a neurologist, and arranged tests to get some nasty things ruled out (carcinoids, pheochromocytoma etc.) which gave me peace of mind. I realise I'm lucky that I'm not plagued with symptoms on a daily basis, they come and go but this condition has greatly altered my life. I work from home so I can rest when I need to, I no longer exercise the way I used to, and I have to be very strict with my diet. And no matter how carefully I manage my lifestyle, flare ups still occur which is frustrating and scary. What is happening to you is real - it's not in your head and I hope you get the medical care you need. Angie PS. I feel we have quite a few similar symptoms - like you my BP also shoots up during an attack, I get icy hands and feet and I shake. Feel free to PM me any time.

Hello Little Blue Jay, I'm so sorry that you're going through a flare up too. It's really scary. You've just got to keep telling yourself that it will eventually pass. Staying positive is important, but also incredibly difficult when you feel so sick. I freak out too! Like you my POTS symptoms wax and wane. I can usually tell from the moment I wake up if I'm going to have a good or bad day. I know I'm in trouble when my limbs feel very heavy and sore or I wake with chest discomfort. I had a couple of okay days at the end of last week but ended up in emergency on Monday night which wasn't so fun. I usually ride out the bad episodes at home but I couldn't handle this one. Today, I feel okay. Hooray! I'm still restricting my activities. For the last few days I've been lying on the couch working on my laptop or sleeping, and resting has done me wonders. I'm also living off lots of leafy greens and veggies and drinking heaps of water. No sugar, meat, complex carbs and I'm limiting dairy. This flare up has made me realise I need to get stronger. So, I'm getting a recumbent exercise bike for home and will start pedalling as soon as I can, even if it's only for 10 minutes a day to start off with. I'm also going to try and stick to Ella Woodward's way of eating. Ella was diagnosed with POTS and changing her diet helped get her condition under control. I figure it's worth a shot Be kind to yourself Little Blue Jay. Keep reminding yourself that your flare will end and feel free to PM me any time. Thanks so much for your support. You're right - we are all in this together. Angie

Hi Emmyjewel, My cardiologist has told me that it could be coronary spasms but is not 100% certain. He prescribed me nitrolingual spray and I carry it around everywhere but I haven't actually used it. The side effects sound awful (severe headache and a drop in blood pressure), although I guess living with chest pain is just as bad. At my last appointment, he said that he doesn't think the chest pain is anything to worry about. He said it could be the small veins constricting in my chest like they do in my hands. I get worried about the pain because it signals the start of a cascade of symptoms for me - nausea, dizziness, weakness etc. I feel so ill when it comes on, but perhaps this could be adrenaline dumping into my system because I'm freaking out about my heart? It's the vague response that I get from doctors, which is the hardest part to deal with. What I wouldn't give for a clear explanation of what is happening to my body when the chest pain occurs. I'm always wondering when I should go to hospital. I'd cope so much better if I felt safe. The only comfort I get is that a lot of people on this forum live with similar chest pain and nobody is dropping dead. Well at least I hope not! Thanks for getting in touch Emmyjewel. Wishing you good health.

Hi there, Many thanks for taking the time to share your advice. I really appreciate it. Just knowing that there are people out there who understand what it feels like to be in the midst of a POTS flare up helps. I'm not alone! ks42 - it is funny you should mention vitamins/supplements as a possible trigger. I recently started taking prenatal vitamins and they did not agree with me at all. After a few days of stomach cramps I went off them, but continued to go down hill - perhaps they set off this episode. I'm also highly allergic to gluten and might of accidentally ingested it through cross contamination at a restaurant. It sounds like our attacks are very similar. Like you I occasionally end up in hospital on an IV when my heart is going particularly bonkers. Once again thank you everyone for the helpful advice and kind words. I was a sobbing mess when I wrote my post yesterday and your replies have really lifted me. I'll be giving many of your suggestions a go!

Hi there, I’m reaching out as my POTS symptoms are flaring up at the moment and I feel like I’ve lost control of my body. I was wondering if anyone else finds that bad POTS episodes occur in clusters? I’ve had three major attacks within the last 5 days. Tachycardia, chest pain, flushing, sweating, shaking, extreme nausea, dizziness, sense of doom... On Monday night I begged my husband to take me to hospital. I felt like I was having a heart attack. Even though I’ve lived with chest pain for years and had my heart checked out, when it’s flaring up it’s difficult to believe something is not seriously wrong. My husband managed to calm me down, and I increased my beta-blocker and took a valium which I don’t usually do. In between the episodes I feel extremely nauseas, shaky and weak. It seems my digestive system has decided to stop working and I’m wondering if this could be contributing to the chest discomfort? It sounds strange, but I feel like there could be a correlation… This bad cluster of POTS attacks come after a few months of pretty decent health – maybe that’s why I feel so shaken up. I realise many of you deal with these horrific symptoms on a daily basis and my heart goes out to you. If anyone has any tips on how to get your body back into balance after a flare up, I’d so appreciate it. Thank you, Angie

Hi there, I experience very similar "attacks", and like you I have had them at night and during the day. Despite living with them for over five years, they still scare the **** out of me. The symptoms you described are almost identical to mine - it starts out with chest discomfort (sharp pains or dull ache over left side of chest), palpitations, and then I feel nauseas, dizzy, and weak. My bowels also go berserk and I need to empty my bladder a lot until I'm passing clear liquid. My face goes pale, or I become sweaty and flushed. Basically my whole body goes into shock - I tremble quite violently, my hands and feet are icy cold, and in the moment it feels like I'm dying. Sounds dramatic I know, but it's as if multiple systems in my body are melting down together. Thankfully, like you the episodes only last 20 to 45 minutes. Although without a beta blocker onboard my resting heart rate can stay up at 120 - 140 for a couple of days. I feel incredibly washed out after the "attacks" - and after particularly bad episodes my limbs will feel weak and achy for 3 to 7 days. At first, I thought I must be having panic attacks, but after winding up in hospital in 2011, doctors immediately ruled this out. I was misdiagnosed with SVT (faulty wire in my heart) and they recommended an ablation. But this didn't sit right with me, as my cardiologist was ignoring some of the symptoms that were worrying me the most - weakness, brain fog etc. I said 'No' to the ablation. Thankfully in March 2013, I ended up meeting an amazing Professor of Cardiology when I was in emergency again at a different hospital. He ordered a number of tests and arranged for me to see a neurologist and I was diagnosed with POTS. I've tried to work out possible triggers, for me I think the attacks could be related to my: - Menstrual cycle - Dehydration - Over exertion The night time attacks are particularly bad and luckily rare. Chest pain will wake me from my sleep at around 2am/3am and the cascade of symptoms will begin. It's frightening but I know I just need to ride them out at home. When I'm having an attack, I ask my husband to tell me, 'you're not going to die, and you don't need to go to hospital.' I just need to hear it. My cardiologist thinks it is an autonomic discharge of some sort. I recently weaned off my beta-blocker (Metoprolol) and only now take it when needed as I'm planning to get pregnant, which is a bit daunting! His possible theories for the chest pain (the scariest symptom) - small veins constricting in my heart like they do in my hands, maybe coronary spasms. It's hard to know...but he doesn't think it's sinister. The fact that I've lived through so many attacks should give me confidence I used to have horrific stomach pain too, but since eliminating gluten strictly from my diet for over two years my digestion has improved greatly. I'm also going to put it out there in case someone on this forum has experienced something similar, that my blood test results in hospital last year showed up with elevated serotonin (just outside normal limit), which resulted in more tests for possible carcinoids. This was ruled out as the serotonin levels returned to normal six months later. Huge relief! I also have mild hyper mobility but they ruled out EDS Type 3. I'd love to know how you cope with these "attacks" mgr268. I get a bit teary after them, but push myself to continue on with my daily activities and lead a full life. Thank you for putting up your post - I don't feel so alone.

Hi Before The Morning, I have had POTS symptoms since 2011 and was formally diagnosed in March 2013, and adjusting my diet has helped me greatly. I used to live with horrific stomach pain and found my body would totally wig out if I ate heavy, gluten rich meals - pasta, sandwiches. So, for over two years I've adopted a very strict gluten free diet and my stomach issues are much better, as is my general wellbeing. Now when I eat the smallest trace of gluten, I'm in a world of agony and spend the night on the toilet. Not pretty! You've got to be careful gluten is in a lot of stuff - sauces, chocolate etc. I also purchased a nutri-bullet and drink plenty of fresh juices packed with leafy greens. Avoiding large meals, refined sugars and limiting my dairy intake has also been beneficial. I definitely try to stick to eating whole foods too - no preservatives! I'm frustrated that my doctors didn't recommend that I change my diet - it took going to a naturopath to get this good advice. Good luck with it all!