stooshiecat

Glad I'm not the only one :). The cardiologist discharged me after my diagnosis so it's just the GP seeing to me now but it's a nightmare trying to get an appointment. I asked for one the other day but the diary is booked up until the middle of September!

I was diagnosed with POTS about 8 months ago and was put of Verapamil (lowest dose). I found an immediate change with it in regards to my heart rate - I went from 120-140 standing to 80-90. My GP decided to keep me on the low dose of Verapamil for a while to let my body adjust. My problem is, I'm getting all the POTS symptoms without the increased heart rate now. I can stand for longer without my HR shooting up but I still get really clammy/sweaty, tired and a bit breathless when I'm on my feet. Has anyone else experienced this? I also still get little episodes sometimes when I get really shaky like my blood sugar is low. It's driving me up the wall so any advice you can give me would be amazing.

Great thanks! I didn't want to make a fuss with the doctor is it was just my IBS playing up!

I was diagnosed with POTS in October. The cardiologist sent some recommendations for medication to my GP after I had a bad time with beta blockers. The drugs he suggested were Verapamil or Ivabradine. The GP suggested I try Verapamil first because it has less side effects than Ivabradine. She gave me a months course (starting dose) and called me to check in after 2 weeks. At that point I was feeling pretty good. My POTS episodes had decreased drastically. I was only getting symptoms in the morning before taking my meds, in the evening before bed and when I was hot (eg heating too high or in the shower). This was a vast improvement because before the meds I was having episodes every time I was on my feet. I did tell the doctor that there was instances where I felt like I was having a POTS attack (feeling really hot, dizzy and a bit breathless) when my heart rate was in the 80s but other that that I felt great. I've been on the meds for about 5 weeks now and I've started feeling pretty lousy. I'm not sure if it's related to the Verapamil so I thought I check in with others who've been on it too. Mostly I've been having issues with my stomach. I've been really bloated, had stomach pain and been quite constipated (and had terrible gas). I do have IBS but I've not been eating anything that usually triggers me and it's been lasting longer than an IBS flare up usually lasts (plus I don't usually get constipated during a flare up). My GP did warn me that, although the Verapamil would slow down my heart it would slow down everything else too (this was in reference to my attempts to lose weight). Also, I've been feeling exhausted for the past couple of weeks. At first, I seemed to have more energy on the Verapamil but now I'm struggling to motivate myself to do anything but sleep. Could my recent symptoms be a side effect of the Verapamil? I don't want to go back to the constant POTS attacks but I don't think I can handle much more of these symptoms either. I'm on the lowest dose of Verapamil so if these are side effects I can't lower the amount I'm taking. What's your experience with Verapamil? Would I have better luck with Ivabradine? My GP made it sound like the Ivabradine had more side effects so I'm not sure what to do. I'm supposed to check in with my GP in a couple of weeks to let her know how things are going. All advice is welcome

I'm from the UK but I don't have a diagnosis yet. Have most of the POTS symptoms but I'm waiting to see my doctor on Friday to see if they'll test me for it. Not really sure how referral works because all the stories I've read have been people in USA. Sorry to hear you're struggling so much. I can totally identify with feeling old. I'm only 33 and most days I feel like I should be claiming my pensions :D!

I haven't had much experience with dysautonomia/POTS. I've had symptoms that have been getting worse for about 6 months now and haven't had a symptom free day. Yesterday felt a bit like a miracle. I slept great the night before, I woke up without a headache, ate 3 meals without feeling sick, was able to think clearly all day and my heart rate didn't go above 105. I did felt a little breathless when standing and got a bit of a headache at night but other than that I was like my old self. I thought I had turned a corner. Then I woke up this morning. I felt like I had been hit by a bus! I had a pounding headache, sore neck, was exhausted and hot and as soon as I stood up my heart rate shot up to 135. I spent most of the day laying down and napping a little. For the first time my heart rate spiked while laying down - every time I rolled over it went up between 110 - 120. Basically I felt horrible. I've had such a struggle today trying to accept the difference between what I want/have to do and what I can do. I feel like I'm about 20 years older than I am and I'm fed up looking around and seeing the housework, etc I need to get done but just can't find the energy for. What's a good and bad day like for you? How do you come to terms with your limitations due to your illness? Any tips, etc to manage POTS are welcome.

Resting HR 65-75 Sitting HR 80s (90s-105 on hot days or after eating) Standing 115-125 Walking 115 - 140s Exercise 150s - 180s

Hi! I'm not sure what my BP is on the Propranolol and I've had to stop taking it now. I was at a doctor yesterday because of my constant headaches. He asked about other symptoms, felt my neck and told my it was tension with no mention of my other symptoms! I wish they'd look at my symptoms as a whole instead of individually. I read that, other than the tilt table, a 24 hour ECG is also used for diagnosis but mine didn't show any red flags. One of the reason I'm so frustrated that they're not investigating is I had a problem with my heart last year. I was going through pre-op for shoulder surgery (which didn't happen) and the nurse found I had long QT intervals. Luckily it was being caused by my medication (which they changed) and cleared up a month or so later.

Thanks for the replies! I was thinking about keeping a symptom tracking diary showing when I'm 'triggered' in the couple of weeks leading to my appointment. This should be helpful because sometimes when I get into the doctors office I forget half of what I was going to say. @Clb75 thanks for the advice about stopping the propranolol a couple of days before my appointment. I'm in the UK so for any testing (beyond blood tests) I'll need to wait for a referral to the hospital (which can take months) but it's probably a good idea to show the GP what I'm like without the propranolol lowering my heart rate. I'm not going to let them dismiss me this time without some kind of investigation because it's been almost 6 months now and I feel like I'm getting worse not better.

Thanks for the response. I was beginning to think I was imagining the way propranolol was effecting me because I couldn't find anything like what I'm feeling when searching online. This whole thing just seemed to come out of the blue and I'm so sick of feeling exhausted all the time. I was almost in tears last night because it was like my brain wasn't working. I was trying to write a to-do list and I just couldn't focus and kept thinking of the same tasks over and over (I have to go to the shop, I have to phone the opticians, I have to go to the shop, etc) and it was so frustrating. I phoned my doctor this morning to see if I can get a closer appoint but was told they didn't have anything until 1st Sept!! So I guess I'm just going to have to wait until the 18th August. I'm gearing myself up to not leave the doctors until they're actually willing to do something to help. Hopefully it goes well

I've been suffering from numerous symptoms for about 5 months now. It started off as dizzy/light headed spells and nausea. My blood was tested and the found I was anaemic (my iron level were half what they should be but have since went back to normal). I started noticing a pattern to my dizzy spells. They would happen when on my feet for more than a couple of minutes. I would get breathless and my fitbit would show my heart rate ranging from 110-140 when my sitting heart rate is 75-80.. I got a bit worried when I had an 'episode' during physiotherapy where I almost passed out and had to sit with my head between my knees. It took about 4 attempts at standing up (each leading to feeling like I was going to pass out) before I could get home. I mentioned this to my doctor and she sent me for an ECG. The nurse doing the ECG implied that I might just be unfit and that my heart rate would stop going way up (sometimes up at 180+ while exercising) the more I exercised. I was sent for a 24 hour ECG which came back showing I had a normal heart rate with occasional extra beats. About 5 weeks ago I had to go to the emergency doctor because of these episodes. The doctor explained that the hot weather we were experiencing could exacerbate tachycardia. When she examined me, my blood pressure was normal, my heart rate was 101 sitting down and I was panting for breath. She said she thought it might be anxiety (which the previous doctor had mentioned as well). I do suffer from anxiety but it's social based anxiety. I told her I wasn't feeling anxious and wasn't worried about anything going on in my life at the moment but she said I might not realise I'm feeling anxious when I am. She prescribed 40mg of propranolol 2-3 times per day (I'm already taking 10mg buspirone and 50mg sertraline for my anxiety). She said at the very least it should control my raised heart rate. She also advised me to make sure I stayed hydrated in the heat. I'm sort of fed up that the doctor keeps dismissing my symptoms as anxiety. I've been suffering from anxiety for over a decade now - I'm pretty good at recognising my symptoms and triggers. From reading online, I've noticed that many of my symptoms seem to fit with POTS: dizziness, palpitations, breathlessness, headaches, fatigue, brain fog and poor sleep. Also I have IBS and hypermobility syndrome which seems to have a link with POTS. I've been paying more attention to when I experience symptoms and it's only when I'm on my feet, when it's hot or after eating. I've been on the propranolol for weeks now and while I've found it useful for controlling my heart rate, I feel like it's been making my lightheadedness and nausea worse. I still get dizzy and feel sick when I'm on my feet for more than a couple of minutes. Does anyone else experience this with propranolol? Right now I'm only taking 1 propranolol per day. I don't like taking it on days I work out because it makes me really nauseated so I have to wait until after any workout to take it. Plus, it seems to be making my fatigue worse. I've already been struggling with my energy levels and feel constantly drained. On days where it's hot I'm basically non functional - I can't even gather the energy to do basic house work. I feel like I'm also checking the clock for when I can go to bed but then I have trouble sleeping. I wake up a lot due to pain (I have shoulder instability causing pain and numbness/pins and needles). Most days I suffer from headaches and what feels like strained eyes. I sort of feel like my brain isn't working. Like if I'm reading or watching TV etc, I can understand what's going on but I'm not retaining anything or I'll forget words when I'm speaking. I've got an appointment with my doctor on 18th August. I think I'm going to ask to be tested for POTS but I'm worried about being dismissed again. I'm worried that they won't be willing to investigate because my main symptoms - the heart palpitations and breathlessness - are being controlled by the propranolol. Has anyone else had this problem (i.e. being told it's anxiety or something else instead of actually investigating) getting a diagnosis? Right now I just feel like I'm never going to feel 'normal' again. In your experience is there something else I should be discussing with the doctor? Has anyone else diagnosed with POTS had a problem with propranolol making things worse? Information about others' experiences is appreciated.