Abramelin777 Posted March 14, 2016 Report Share Posted March 14, 2016 Hi to everyone, This is my first post here & I'm very glad that I have found this site. It is very comforting to know that I am not alone in this situation. I've had M.E for 25 years now & I suppose I've always had PoTS symptoms, just that they've got worse the older I've got. I recently got a semi diagnosis of PoTS from a cardiologist after a tilt test (my bp & hr go up so I'm thinking hyperadrenergic). I've been taking a low dose SSRI & beta blocker but have been prescribed Ivabradine (took it a few times & felt very strange) & a calcium channel blocker which I am very hesitant to take. I have been very anxious recently especially when waking & when I'm alone in the house & my heart starts misbehaving. I'm now scared to even get out of bed & move around. I'm not sure if it's a generalized panic thing or part of PoTS. Can any of you share your experiences of your symptoms & medications. Thanks, David Quote Link to comment Share on other sites More sharing options...
Lily Posted March 14, 2016 Report Share Posted March 14, 2016 I have POTS with a hyperandrenergic component. It feels to me like my body is anxious without my mind being anxious: too much adrenaline, fast HR, tight feeling in chest, sometimes palpitations. Also fatigue from all the sympathetic activity. I take Clonidine, which knocks the sympathetic nervous system down a bit. It definitely helps. Quote Link to comment Share on other sites More sharing options...
statesof Posted March 14, 2016 Report Share Posted March 14, 2016 I have POTS as well as generalized anxiety/ panic disorder. For me since my POTS symptoms worsened it is like by body over reacts very easily, so if I am anxious my heart rate is one of the first things that flares up, and one of the last things to settle down. Overall my POTS just makes my anxiety disorder more of what it already is. I don't take medications for anxiety but am on a cc blocker for chest pain; it has no other affect on my mood or POTS symptoms. I become anxious more easily since having POTS so I find I'm constantly having to push outside my mental/ emotional boundaries so that I stay ahead of the anxiety and don't get overly comfortable. Quote Link to comment Share on other sites More sharing options...
Abramelin777 Posted March 14, 2016 Author Report Share Posted March 14, 2016 Thank you both for replying. I sympathise totally with you on this. I'm finding it almost impossible to deal with the constant anxious feeling, always aware of my breathing & heart beat & every other sensation. The smallest thing can set me off. Recently the hospital tests have been a major stressor even though they went well &n I find I'm worrying about health even more now. Quote Link to comment Share on other sites More sharing options...
Katybug Posted March 15, 2016 Report Share Posted March 15, 2016 Someone told me recently that there is a contraindication between ivabradine and calcium channel blockers. You may want to double check that with your doctor or pharmacist. Welcome to the forum, by the way! Quote Link to comment Share on other sites More sharing options...
Abramelin777 Posted March 15, 2016 Author Report Share Posted March 15, 2016 Thank you Katie. At the moment I'm taking neither drug as I have concerns as to what they have been prescribed for...is it angina, is it PoTS, dysautonomia etc. Quote Link to comment Share on other sites More sharing options...
TCP Posted March 15, 2016 Report Share Posted March 15, 2016 Hi. I was diagnosed with ME back in 1984. I have been diagnosed with EDS and POTS this past couple of years. I believe I had autonomic dysfunction after EBV. I think chronic fatigue is a feature of autonomic dysfunction/POTS and EDS. I have since realised that I may well have Mast Cell Activation after the EBV and it has triggered all of the nervous system disorders, such as autonomic dysfunction.POTS, gastroparesis, IBS, allergies, intolerances, neuropathic pain etc. I am on a very low dose of Ivabradine and also I am coming off Nortriptyline. I wonder if the Gabapentin is actually still working. Anxiety is part of this condition. When I say condition, I mean MCAS. Many people with POTS and/or EDS have it. Quote Link to comment Share on other sites More sharing options...
Abramelin777 Posted March 15, 2016 Author Report Share Posted March 15, 2016 I've been looking into MCAS but I'm a bit lost with all the information..so much to take in. What dose of Ivabradine do you take & has it helped at all & do you have any side effects? Quote Link to comment Share on other sites More sharing options...
TCP Posted March 15, 2016 Report Share Posted March 15, 2016 This is a lot of info on MCAS, but I've looked mainly into the low histamine/oxalic acid foods. They are listed on low histamine chef. I also take the supplements suggested there. I only can tolerate 2.5mgs of Ivabradine, any higher and they upset my gut. I'm hoping to eventually be able to be meds-free, as I don't tolerate them very well and give me many other health issues. Take advice though, but doctors only dish these things out and they don't always help. Quote Link to comment Share on other sites More sharing options...
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