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Thanks for your replies, I’m seeing an autonomic/endocrine specialist in a few weeks and will ask if I can get tested. I’ve also had mild scoliosis too-remember being given exercises in primary school to try and straighten my back out. It’s amazing reading the Driscoll theory as I’ve had nearly all these symptoms. I have started the antihistamines now for 3 weeks and I have improved significantly, so much better, thankyou Dr Diana! Feel like I am finally getting some answers after 4 years! The doctors look at you like you’re mad when you ask to be tested for mast cell disease and they barely know what POTS is, but I am just glad to find something that is finally making me feel a lot better!
My POTs had got really bad again the other week and I had been noticing on rainy/humid/thunderstormy days it was really bad and wondering if this was due to allergies/increased histamine release? I had 3 really bad days and ended up in Emergency and asked to be tested for mast cell disease. I tried the Darier’s sign test at home as suggested by Dr Diana and on rubbing my skin it came up a really bright red colour and stayed there for around 20 minutes and I actually wrote my name across my chest with my finger (this has now reduced significantly since being on antihistamines). The doctor said he thought it was pointless testing for mast cell disorders when the treatment would be antihistamines anyhow, so he put me on 3 different types- Zantac, Polaramine and Phenergan and I’ve been on antihistamines for 2 weeks now and so much better already! I take the Zantac twice a day and the other ones when I feel I need to (being a bit careful as I’m breastfeeding). I can now go and do the shopping for a couple hours before I need to go lay down as opposed to lasting 30 minutes or less as previously. I am able to do a lot more and don’t feel like my neck is as swollen and it’s much easier to breathe, less fatigue etc.I always found an antihistamine helped when my symptoms got really bad (the doctor put me on them as he thought I was having bad asthma when I first started having problems so always knew they helped, but wasn’t sure why). I would officially like to be tested though so I definitely know this is the problem. I think it possibly is as when I get really bad I get flushing symptoms and my bp can go high (as well as low) and I get the postural tachycardia and are very sensitive to beta-adrenergic medications eg. asthma puffers like Symbicort. I also get random bouts of diarrhoea and recurrent sinusitis,asthma symptoms, neck feels swollen, get breathless, wheeze sometimes all with the POTS symptoms. Does anyone else have similar? Are there other tests you can do for mast cell problems?
Hi there,
I’m new to this forum. Officially diagnosed with neurocardiogenic syncope or postural hypotension, but I’m sure I have POTS (get the heart rate increase between +30 to +70 bpm from lying to standing)and all the classic symptoms, but don’t think my doctors know what POTS is and they never check for it- only interested in my blood pressure and only do sitting to standing which doesn’t show as much change. Wondering too about whether I have a form of Ehlers Danlos or not? Anyhow…my biggest concern at the moment is the symptoms I am getting lying down. I have had similar before on occassions when I have been really unwell, but 2 weeks ago I was having them almost every night and some nights very bad I didn’t know if I was going to make it. A while ago I started getting symptoms around half an hour after lying down and this would always baffle me as to why this would happen and I’d had the symptoms when you wake up feeling like you can’t breathe/suffocating and your heart races initially, then you come right. It’s amazing reading the Driscoll theory as it is making so much sense to me. Not sure if I have Ehlers Danlos or not, but it is what has made the most sense to me of anything I have read so far. I do have large styloid processes on both sides of my neck so wondering if this is contributing too? I have had occassions when I used to wake up paralysed and this was so scary, but I think it was when I was on the Beta-blocker at night and I’m guessing it was making my already low heart rate even lower and causing these symptoms, very scary! Sometimes when I lie down my heart rate and blood pressure will be on the lower side- 90-100/50 and HR 50-60 with the symptoms. The other week I had a heart rate of 43 but my blood pressure was up- 160/100-110 while resting, this was strange, but happened 3 nights in a row. Felt very weak and faint while lying down and like you are about to go unconscious. The only thing I find that helps is having a strong salt drink and few glasses of fluids and I have found on occassion sitting up does help. I have also taken an antihistamine when I get very bad and it has helped too (never knew why, but now wondering about mast cell disease??) I had a very bad night after getting engrossed in my sewing for a couple hours. Sitting up in one position like that for so long makes the orthostatic intolerance worse. I laid down and felt very unwell, faint etc and my breathing got very laboured and slow and felt like I couldn’t breathe properly, feels like my diagphragm muscles were not working properly. I rang the ambulance but it was even hard to talk to them I was so weak. I’d had a litre of fluid before bed,because I knew I’d overdone it and I started to come right about 5 mins before the ambulance got there. Was still very weak, but improving when they arrived. One other bad night it felt like my breathing was about to cut out and my speech too and swallowing, was awful and I thought I was not going to make it. I was waiting for the salt water to kick in, then I was shaking and cold for about 20 mins and very confused and groggy. My husband keeps talking to me, telling me I’ll be ok soon, but I’m scared that what if it doesn’t work/kick in one day? Wondering if this is life threatening as it certainly feels like it. After the fluids kick in I start to come to, but I am very weak for a while until I eventually fall asleep. These symptoms really scare me and I have told the doctors and went to emergency the other week as my blood pressure had been up for 3 days (unusual for me) and the bradycardia and breathing issues lying down. The doctors do not seem to understand how bad it gets, thought I was close to having a stroke. Sometimes sitting up will help, but sometimes I’m also very dizzy when I sit up. Have had to crawl to the bathroom a few times- one night after exercising I could not sit up for a few hours, was so dizzy and almost fainted. Had to sit up in small increments. Does this sound familiar to anyone out there? I’m going to see an autonomic specialist in a few weeks and having another MRI next Monday, so will see what happens from there, Thanks any advice would be appreciated! I have tried the coffee before bed thanks Dr Diana and it does seem to help, thankyou! I take the salt and fluid too and antihistamine and this helps too. Thankyou, Lisa
Just thought I’d add that often when I am almost asleep, I’ll wake up with a jolt/gasp and every time I try to fall asleep again this can happen up to say six times in a night when I’ve had a bad POTs day. Last night I woke up a few hours after being asleep and I felt very unwell and my face felt swollen and numb and like I wasn’t getting proper circulation and felt like I would pass out. Other times I have woken and found it difficult to lift my arms and upper body feels heavy and numb like lead. I sleep with 2 pillows at the moment, but seem to end up in some weird sleeping positions sometimes with my neck bent.
