Just terrified.

[acouchy]

I am terrified of a sorta new symptom I am having. I am guessing it is cardiovascular but really have no idea. I get this fluttery feeling in my lower throat/upper chest. Messes with my breathing. Then I feel very, very, very faint. It is a really intense blackout or die feeling. Then my digestive track gets upset and my feet get cold and sweaty (probably a nervous reaction to being terrified). It is a truly horrific experience. I feel terrorized afterwards.

My guess is that it is connected to an issue I explored a few years ago but it is just a guess. I had my heart checked out by a cardiologist a few years ago. They thought I had Long qt syndrome. They did a blood pressure monitor for 24 hrs and a heart rate monitor for 24 hours. They diagnosed me with "alternate electrical pathway" and said I had like 5 irregular heartbeats during the 24 hours and that it was nothing. I also have low BP. Told me to be "careful" in the morning. They didn't seem concerned and sent me away.

Does anyone else experience this? Is this an ME symptom? Or is this something unconnected to ME? I don't what it is or why it happens. It has happened when I am standing and when I am sitting. It happens without warning and scares me. Help.

 

[Rufous McKinney]

Is this an ME symptom? Or is this something unconnected to ME?

I get sudden onset weirdness that is simply hard to explain but feels a bit like what you describe. There is a bunch of weird stuff here that sometimes I hypothesize is insulin related. Like a sudden hypo-drop. Often then feels like adrenalin weirdness shortly after. Then it abruptly kinda stops. My ears abruptly go QUIET then go RINGING and the cellophane in my brain feeling happens, but my heart rate feels weird also. And that fluttery feeling.

 

[L'engle]

@acouchy I haven't experienced this maybe others have. I hope you can find some answers, it sounds very scary. Sorry you were dismissed, that seems very unfair.

 

[acouchy]

I get sudden onset weirdness that is simply hard to explain but feels a bit like what you describe. There is a bunch of weird stuff here that sometimes I hypothesize is insulin related. Like a sudden hypo-drop. Often then feels like adrenalin weirdness shortly after. Then it abruptly kinda stops. My ears abruptly go QUIET then go RINGING and the cellophane in my brain feeling happens, but my heart rate feels weird also. And that fluttery feeling.

I wish we had some real answers. Definitely feels like adrenaline is involved. It happens so very fast. Lasts under a minute.

 

[Rufous McKinney]

Definitely feels like adrenaline is involved

Yes. In this body, maybe a weird adrenaline glich generates an insulin Kaching.

My blood sugar is a mess apparently. Sugar and carbs re mostly gone from the diet. I continue to lose weight.

I have few options left. I have to get calories from someplace, so zero fat ain't happening and does not seem correct. I think good fats are important.

 

[Wishful]

I've had a couple of 'starting to black out' periods. It usually occurred after something physically demanding, such as lifting something heavy, or walking too fast. I'd have to sit or lay down to get the blood flowing properly again. I assume that my blood was pooling in my lower body temporarily. My doctor didn't think it was anything serious, and it went away on its own, making a few brief appearances afterwards. Any heart tests I've had indicated good health (Hah!). It was just a mystery to me.

ME has a wide range of symptoms. My blackout issues seemed to not be serious, but I wouldn't take that to mean that your issue doesn't have a serious basis. I suggest keeping good notes about what happens and when, and what you were doing/eating beforehand. From that you'll have to decide whether you need better cardio testing.

 

[Ravn]

That does sound terrifying @acouchy!
While it's true that ME can do all sorts of strange things to heart rythms, gut, fainting, etc. a significant change like yours should be checked out properly by a doctor, especially with you having a history of heart issues.

 

[Gingergrrl]

They thought I had Long qt syndrome. They did a blood pressure monitor for 24 hrs and a heart rate monitor for 24 hours. They diagnosed me with "alternate electrical pathway" and said I had like 5 irregular heartbeats during the 24 hours and that it was nothing.

My first thought when I read this was, has your Cardio checked for Wolff Parkinson White Syndrome? It causes an extra/alternative electrical pathway in the heart and tachycardia similar to what you said. I am NOT saying that you have it but just worth inquiring about.

Here is a link about it:

https://medlineplus.gov/ency/article/000151.htm

 

[Shoshana]

Your description , @acouchy
sounds like arrhythmias, to me, (abnormal heart rhythms) BUT, that is just a guess.
If so, there are multiple types, some not dangerous and some are. Some need medical interventions and some do not.
We wouldn't be able to diagnose that, or anything for you, so these posts are guesses.

I hope you could call a doctor , to explain to them, especially if this is different symptoms from what you had a few yrs ago,

and hopefully they would help to determine when (how soon ) you should be checked out again,
to see if there are any changes since your last visits to the cardiologists, or if a doctor thinks it is something else, or whether you should be seen right away or not. You would need better medical advise than we could give, to know if it is serious and needs attention, or not.
ME /CFS does a lot of things, but we cant assume everything is "just" that, either.

Sorry it is scary and difficult, and i wish we could give assurance, but we cant know what it is or what type of help you do or dont need.

 

[Wolfcub]

I am so sorry you get that terrified feeling @acouchy and those symptoms.
I think it does warrant being re-checked by a doctor, just to be on the safe side.

I can relate, as I got some similar sensations, and yes they are scary when they happen.
Fluttering heartbeat, palpitations, and an awful gut-level sense of doom, sudden upset belly, with an adrenalin type reaction which went through all my body. That happened a LOT to me when I first started being unwell a year ago.
Though those can also be anxiety symptoms, they were in my case brought on by a flu-like illness, and I didn't think they were primary anxiety symptoms at all, but an intense physical disharmony taking place which was causing a fight/flight reaction (adrenalin)
They do still sometimes happen but slightly milder than they were in the beginning, and rarer now.

I do hope you can get re-checked by your doctor? And I wish you the very best, and hope that starts to ease up for you very soon!

 

[PatJ]

I get this fluttery feeling in my lower throat/upper chest. Messes with my breathing. Then I feel very, very, very faint. It is a really intense blackout or die feeling.

I used to get that every so often but I don't anymore. I think a combination of methylB12 and CoQ10 helped to resolve it. Cayenne may be useful as well since it's good for the heart and helps to regulate blood pressure.

My blood sugar is a mess apparently

Dr. Christopher's Liver and Gallbladder formula, and Dr. Christopher's Pancreas formula have helped me considerably with blood sugar control (regular hypoglycemia in my case).

If you have problems with high blood sugar then it's useful to know that apple cider vinegar is very helpful at lowering blood sugar, preventing blood sugar spikes after meals, and it can lower morning blood sugar when taken before bed.

 

[SlamDancin]

I had full on syncope and woke up in the water after trying to get up out of the bathtub too fast.
Just a few weeks ago.

I’ve had near syncope/syncope several times over the years. It used to happen a lot when I would try to play basketball after high school. It definitely seems to be blood flow and (nor)adrenaline related during these brief episodes, and salt is a powerful anti-adrenaline agent you can try. I also am taking Mestinon/Metroprolol now and they help me stay in my energy envelope. I’m so sorry you have these too. Last time I went fully under I was pretty shook when I woke up not gonna lie.