Panic attacks or crashes?

Sounds like you are overdoing @Marky and getting accumulation PEM but always important to get your heart checked by a doctor as you have done, even though they don't know the cause. Get a second opinion if you can if you still feel uneasy about possible heart problems apart from ME.

I love cooking and shopping but since ME it is not enjoyable due to feeling like I am going to collapse/black out suddenly. I've never blacked out in all the years I have had ME, thankfully, but have felt very close to it.

Standing over the stove has always been a hazard and not pleasant. I am constantly monitoring how I feel and ready to flick the off switch at wall while cooking. I also stand by the stove top in a way that if I do fall I will fall away from the stove and not over it.

 

@Marky I don't think your going to be able to continue with this. I've tried many times with strength training at home. There is something in our muscles that triggers PEM when we try to strengthen them. It's just not worth going through the severe PEM's and the weird scary symptoms you get. Hope things settle down soon with lots of resting.

 

I dont think i have any heart problem, but when i had the first two episodes i could not know what was going on so that escalated the anxiety i guess.
Yea I wont continue with it, at least not as hard as i did it. The thing was that i never really got any obvious PEM from it before i collapsed, so I thought i was just doing something healthy. Just gonna rest even harder for a while i guess..;P

 

Same here! I`m quite astounded it has not happened, at the same time I guess it helps to concentrate all ur willpower to not black out haha

 

If you have no heart problems and have ruled out everything else, I believe you were having panic attacks after the first episode of crash.

The panic attacks should stop. Be careful and don’t overdo it. Strength training is very, very hard on us. The last leg day I did before I knew better, I came home, opened the door and collapsed on the floor. I couldn’t walk anymore and my daughter had to drag me to bed. Pretty scary. That was many years ago, when I didn’t even know I had ME. I never did it again.

Be gentle with yourself.

 

I imagine strength training could be severe on a person with ME. Could your blood pressure be dropping and your heart rate increasing as a compensation. She thought it was a panic attacks but felt it was related to something physical. She was lucky to find a doctor who recognised the symptoms. He said it was due to rapidly falling blood pressure and that her heart rate was rising to compensate . She had two positive tilt table tests... Beta blockers were advised. They slowed the heart rate but she felt even worse because of severely low blood pressure. I hope you get some answers. Panic is horrible on top of everything else.

 

I get occasional brief but intense-feeling episodes of tachycardia - my heart rate doubles and stays like that for a few minutes. I have captured the heart rate on my bp machine at home, but no doctor has ever found anything wrong with my heart. Could it be that? It feels horrible.

 

I am not sure I know what 'panic attacks' really are. Whenever I or a family member has had an attack of panic then we were preoccupied with what we were panicking about, not heart rate. But a sudden increase in heart rate is a common reason for panicking. So I would interpret the problem as some sort of autonomic discharge that leads to anxiety rather than the reverse.

I actually went through a week of something a bit like this on a ski-ing holiday. I say that just to suggest that all of us may go through periods of autonomic instability at times. I suspect for PWME that will be much more likely.

Is it a 'crash'. I am not sure that there is an answer to that but it does not sound like what people typically describe.

In general terms I would say that if the high heat rate is not associated with any heart abnormality and ECG shows sinus tachycardia (rapid but normal electrical rhythm) then there is no immediate cause for concern. As to what is actually going on I suspect that may as hard to answer as it is for ME itself. But episodes like this tend to fade away. You need to follow medical advice but my only other thought would be to 'hang in there' a bit - the best advice anybody ever gave me when I was as low as it gets.

 

Thanks for your thoughtful reply Jonathan!

Interesting to hear u have experienced something similar.

I don`t know how to explain what it is either, funny u mention it. I would say that what the literature describes as an "impending sense of doom" fits quite nicely, which comes when my heart starts pounding fast, and then my mind starts to race frantically to understand what is going on, i get shaky, and i feel that I am struggling to stay conscious. Since I have ME as well, u feel so miserable that Ive just assumed "this is it" the three times its been really bad Obviously if u assume that, it gets way worse, so that`s something to work on.

I`m not concerned about heart issues at all actually, cause ive had echocardiography and the rest earlier in my illness, so im just trying to understand at what angle I should approach this. Although they did find i have irregular heartbeat (supraventricular tachycardia) when jogging, I assume that's more related to whatever is awry ME-wise. I havent felt any irregular heartbeat during the attacks, and i clearly felt them when jogging.

If these episodes happens due to the strength training i was doing the last month and therefore is ME-related, then the best thing is to do not much at all for a while probably. If there is some psychological issue that has happened, then I`m thinking i should try and just keep going to store etc so I don`t develop any phobia. I mean I have to anyway cause i live alone and need to buy food haha. I get scared about having these attacks, cause if its so bad I go to the ground it is extremely embarrassing. A 28 year old man spazzing out on the floor is a ridiculous sight indeed.

At the moment I`m just doing what you have suggested, hanging in there a bit, and tracking when it happens. So far i think its a mix of ME and psychological, cause when i go to the store first thing in the morning, ive managed to do the shopping without it getting to bad. This kinda tells me my functioning level is relevant for its occurrence.

 

Yea I think ur spot on here Dechi! Come to think of it, when i had my first collapse after football training exactly 5 years ago when i first got ill, I struggled with similar anxiety episodes for like a month, just not as intense as the last ones ive had. Then eventually i started gradual exercise, and my ME eventually worsened again after pushing it for months. Graded exercise has not been a good treatment..

 

Thank you all so much for your help. It has benefited me much more than my two trips to the ER

 

This sounds familiar to me Marky and I have heard of other ME CFIDS patients saying they get this. I still get episodes of what I call an adrenalin high, when for no reason I feel shakey and very airheady as if I had a shock, but didn't. Over 33 years of ME it has become less severe.

When I was first badly affected by this in 1987 it was in conjunction with a sudden onset of caffeine hypersensitivity and a big storm which hit the UK, as I had taken a job in forestry (to try to get outside and avoid pressure) and had to clear up the mess which was a lot of work. The combination caused a period of lucid psychosis. So cacao, which contains caffeine, may not be a remedy, it may exacerbate it, you will have to see what happens for you but be careful.

At first I was undiagnosed despite asking a few doctors what was going on and the stimulating effect drove me to be physically hyperactive in bouts and this resulted in major crashes, so a vicious spiral of ME adrenalin, activity and crashing.

After diagnosis which was 10 years later, I realised it was an unfortunate illness event and learned to recognise it as such and respond by resting and relaxing and waiting to calm down rather than getting upset and carried away with it. It comes like a wave and there is nothing I can do, just have to wait for it to subside but the less alarmed I am by it the quicker it goes.

I did see one presentation by Nancy Klimas a few years ago when she mentioned a signalling molecule she was looking at as part of her cytokine studies and I recall it had the potential to build up and then trigger an adrenalin release in a kind of cascade reaction. It seemed to fit the bill but I have lost track of the link sorry. I vaguely recall it was called "gamma" something. Anyway I am sure it is a biological mechanism of some kind and one just has to respond appropriately.

 

Hi @Marky have you had a Holter monitor as of late? You seem to describe anxiety when you feel these symptoms but it doesn’t exactly rule out physical problems and certainly cardiac problems need to be ruled out, regardless of your age.

Best wishes.

 

Hi Milo!

Ive had a holter monitor 4 years ago, which showed tachycardia when jogging for over 10 minutes. My heart is however mechanically healthy on echocardiogram, and all EKGs have been fine. It has not acted abnormally under these episodes either (e.g i actually felt the tachcardia when jogging), so ive pretty much ruled out this being an issue. After spending a week resting, I have not had any more "attacks/collapses", so I think it was all ME-related to some extent