Chuske

Thanks @MoldBoy I also found ginger tea can help (made with grated ginger root). I agree food is def a factor, not 100% sussed my triggers but whatever it is, it only occurs in a flare up not when I'm doing well.

I find when I'm in bad flare like now I get adrenaline surges and particularly feel then surge around my kidney / adrenal area of my back, do others feel it there? I also find the symptoms disrupt sleep causing worse surges, this is the bit that always gives me the worst issues, anyone finds any tips, tricks or hacks? A bit of a shock to be back in this after 2 years of remission, I'm forgetting what I did to get out of this before.

I thought I had got myself in a robust and stable remission but just this week have had my first big flare in over 2 years, after a lot of stress and a possible stomach bug. I didn't get an email ntification of your reply and only here to reread what I did last time to get out of these dire and horrible flares. I'll try and let you know how I get on, biggest issue at the moment is adrenaline surges and hot flushes disrupting sleep and the sleep loss worsening the symptoms, ie viscous circle

Soup or fluids are more of a trigger then solid food I also notice risotto rice can also be a trigger. Yoga twist is sitting crossed legged and simply twisting from the waist to look behind you and hold that pose for a bit then go the other way. It can help to put the hand on the side you are twisting towards behind you (close to your body) and the other hand on the opposite knee. So if twisting to the left then left hand is on the floor behind you and the right on the left knee. Another way is lying on your side with legs pulled up (almost foetal position) and the raise your upper body of the bed and also twist gently at the same time.

For awhile now I've had what I call palpitation attacks where I feel odd, kind of on edge and then heart beat gets very strong then ramps up to 130 then drops down to 80 and the goes up and down between 80 and 110. After wards I get shaking jaw and muscle contractions in my legs. First few times I went to A&E (ER) but always nothing was found by the time is saw anyone. These days I don't bother unless it lasts. Anyway, today for the first time I noticed the warning signs before the heart rate ramped up and noticed stomach was bloated and I was a little thirsty. So I drank water and did a yoga twist to help get the gas up and for the first time I averted the worst of the attack. So looks like the 3 factors that combine to trigger an attack are dehydration, gas (burps) creating pressure under the diaphragm and being a bit fatigued or had a stressful day the day before. So means I need to be extra careful with hydration on days I'm run down and to make sure gas doesn't build up in my stomach. Sharing in case it helps others.

I find that swallowing particularly fluids can both drop or spike my heart rate. I also have same issue if gas (burps) get trapped, which happens more when my POTS is worse. Is this common? I'm guessing it is a normal response but maybe magnified by a dysfunctional ans. Also POTS specialist Dr Gupta in the UK talks about gastro-cardiac syndrome (aka Roemheld syndrome) where quite scary symptoms (but benign) can be caused by bloating or hiatal hernias. Sometimes can be tricky for me when needing to drink fluid to stay hydrated as can cause a lot of symptoms. What are others experiences and did any medication or self-help management help you?

I'm not sure if taking this caused my recent bad flare but it didn't help. Thing nearly three weeks after coming off it my BP is still higher than was before or during the last flare a year ago. Bit confusing as to whether the flare was happening anyway and I wrongly assumed it was the drug or if the drug has destabilised my system. Pretty frustrating as months of careful work had got my sleep and exercise improved. So I had gone from bedbound during may and June to being able to do a very short walk by the sea at Christmas. And now I'm back bedbound and unsure if the drug was a factor.

I had this two nights this week. I'd had this also a few times last year and some of them were in daytime as well as from sleep. Not really sure what triggers them or why they went away for several months. One possible connection for me is my GI symptoms in that I often get trapped burps building up and putting pressure on my diaphragm. Another is hydration. So if I get an attack I try sipping water and doing yoga twists to try and get the burps up. I also find when awakening from sleep in a pots flare I get brief tachy and then an odd sensation in my solar plexus a little bit like the feeling of being in a car going over a hump back bridge. Not yet found how to stop these. Last time eventually they stopped as it got better.

Thanks @Pistol and @angelloz I'm doing a bit better as had a night with only minor short lived surges. In terms of the standing regularly did you do it all day until ready to sleep? My energy and light headedness gets worse as day goes on so becomes more challenging. I'm finding massages really help a lot with everything. Thanks for the msgs of support, I am hanging in there, fingers crossed I can get more nights without surges build back out of bedbound to my yoga mat.

After doing well for months ive had a big setback and pretty much bedbound again. Been getting very scary episodes at night of heart going fast and thumping suddenly in the middle of sleep. GP came out and did basic tests and thinks just all in my head. Had a lot of tests last year for similar incl 7 day holter that ruled out svts. Seems until I get well enough to get out hard to get anymore help particularly with pandemic on. I wondered if these events are autonomic adrenaline rushes. I get shaking and involuntary leg contractions as it wears off and then get another rush can keep cycling like this for hours wrecking my sleep. Also feel hot at the start of a rush. HR cycles up and down between 75 and 125. Pretty much no medical help and don't know what to do. Slow breathing doesn't seem to help but drinking water can help a bit. No idea what to do. Any tips?

@Pistol thanks so much, that is really useful to know in advance of my call with my doctor.

I've recently been prescribed this 4 weeks ago and have got much worse while on it. Has anyone else had that? I had been doing really well and specialist thought would try it to help me increase mobility further. But since taking it I've had more hyper symptoms, dizzy spells, anxiety and my ME (which I have as well as POTS) has got much worse. I'm speaking to my GP tomorrow and hoping to be tapered off it. Reason I'm asking here is can't be 100% sure it wasn't just a coincidental flare up and so wondered if others had found issues with it?

Dr Gupta says salt is only bad if your blood pressure is high, altho that was purely from a heart disease perspective. I think if you are taking water and other electrolytes along with your salt then that should not be a problem? Maybe spread intake through the day, so stomach not suddenly filled with salty water? Whatever the short term effects of not having the salt, when you have POTS, outweigh any long-term ones in the gut or heart of having it.

Sometimes get stuck between sleep and awake. The state is deeply relaxed and drowsy but still consciously aware and can't quite transition to sleep. This only happens in my flares. If it was adrenaline surely I wouldn't get so relaxed and sleepy? Often I get a tight feeling in my head and the more tired I get the more drowsy I get but the harder it is to fully transition into sleep. I'm probably weeks or months away from seeing a either a POTS or sleep specialist so been wondering if anyone else had this and had worked out anything that helped? Or has anyone got an idea what is happening? The only thing I have worked out for sure is getting too tired makes it more likely as is trying to nap in the day after a bad night. Overall my sleep had been better for a few nights but then this started happening again and apart from getting tired with low BP in the evening I couldn't see what the trigger might be.

Deleted original text as seemed better to move what I originally wrote here to its own thread and could see no way to delete this post.

Thanks @issie. What dose do you take? Or how did you work out the best dose for you? The really hyper spells for me are bad but rare so something to take the edge off them would be fantastic. I'd rather have something to take as and when, rather than being on medication all the time that might cause side effects or withdrawal if stopped/changed later.

Hi @issie you mentioned motherwort on my thread about my flare up, do you take this at a particular time of day or just when a surge happens? Do you only take it in combination with lemonbalm or by itself? How much do you take?

Good to write down how you feel. Can really help. In this flare up I just keep reminding myself this will pass and it will get better. I did before. The trick in these difficult periods is to ride it out.

Got blood and urine test results back. Everything normal except lymphocytes slightly low. Not sure if that means much though, only spoke to secretary, so will have to wait for doctor to look at it and decide if needs repeating or further tests or ok to leave it. So looking like it's just the usual ANS dysfunction that has flared my ME and POTS.

Hi Robin. As I'm finding in this pots flare it's all about stabilising your condition with the help of your doctor and other lifestyle measures. Once you have things a bit more stable it should be easier to start building up again. So don't be in a hurry to do too much exercise and also remember deep healing rest is important too. That said I know how horrible and scary it all is but we will get through it. As the famous Churchill quote says "if you're going through h***, keep going". Hope the meds help you get the heart rate down.

I think anxiety can be both a cause and effect in this. Symptoms cause anxiety which worsen symptoms. Sometimes slow breathing exercises can really help me as helps both anxiety and ANS dysfunction. It is not a cure but can help. Some research suggests panic attacks only occur if you are breathing incorrectly ie into the upper chest, shallow and or fast. If instead you can practice breathing into the diaphragm, slower and reasonable depth (although some like the Oxygen Advantage guy suggest reducing breathing depth is good) then it may well prevent a full blown panic attack. Worth a try.

Wish I knew what triggered my worse days but as others say it just seems part of the deal of POTS and ME. My symptoms vary a lot and not easy to spot patterns in terms of diet and activity,particularly as sometimes reactions for me are delayed.

@issieWhich blog?

What do people find more effective the speed or the rhythm? I think breathing using the diaphragm is a given. I find the rate is more important than being square. I find a full in-out breath using diaphragm over 10 secs to be about right. The rhythm can then either be 3-7 4-6 or 5-5 ( seconds for in then out ) but I find slow in breath and short outbreaths less effective so I don't do those.

Anxiety triggered my recent relapse too. Fits with the research article @issie shared showing the brain can get stuck in inflamed state after high or prolonged stress. Hope you feel better soon I'm going through similar horrible attacks at times. Very scary.