Waking regularly with heart palps/crash

[Chriseraphim]

Hey guys! Wondering how many people have this issue. I wake up suddenly feeling odd then the heart speeds up so much, sometimes upwards of 160 but at times over 200bpm.

When this happens the body is really weak and incredibly shaky. I've been to hospital with it a few times, but its always calmed down by the time they get here. Ambulance plenty of times but again, its settled within 5-10 mins.

However after that I am extremely wiped out and shaky / unstable feeling for at least a day if not a couple of days. Sometimes the crash can cause a loop where it happens multiple times over a day or 2. It's incredibly scary.

Main problem is lately i'm alone 95% of the time (shoudlnt be but just how it is at the moment). It's always 10x worse and more frequent when I have a bad virus, and this winter I have had this huge virus for 3 months straight or more with lots of these crashes.

I've had to inject cortisol at times because its been so bad and felt on the edge of blacking out (I have adrenal insufficiency).

It sux because i had been much better than this before this winter for a while. Any ideas most appreciated. Thanks.

 

[Cort]

Hey guys! Wondering how many people have this issue. I wake up suddenly feeling odd then the heart speeds up so much, sometimes upwards of 160 but at times over 200bpm. When this happens the body is really weak and incredibly shaky. I've been to hospital with it a few times, but its always calmed down by the time they get here. Ambulance plenty of times but again, its settled within 5-10 mins. However after that I am extremely wiped out and shaky / unstable feeling for at least a day if not a couple of days. Sometimes the crash can cause a loop where it happens multiple times over a day or 2. It's incredibly scary. Main problem is lately i'm alone 95% of the time (shoudlnt be but just how it is at the moment). It's always 10x worse and more frequent when I have a bad virus, and this winter I have had this huge virus for 3 months straight or more with lots of these crashes. I've had to inject cortisol at times because its been so bad and felt on the edge of blacking out (I have adrenal insufficiency). It sux because i had been much better than this before this winter for a while. Any ideas most appreciated. Thanks.

Ouch....Any possibility of seeing an autonomic nervous system specialist?

You'd think there would be an instrument you could wear which could capture it as it's happening that could tell them more (???)

I don't know about sudden attacks. Actually my heart issues - which are really rare - seem to have more occurred after I've been sedentary. I do some exercise - get some good post exertional malaise going - and that has seemed to help them go away. Pretty small sample size though.

Scary stuff!

 

[Chriseraphim]

Ouch....Any possibility of seeing an autonomic nervous system specialist?

You'd think there would be an instrument you could wear which could capture it as it's happening that could tell them more (???)

I don't know about sudden attacks. Actually my heart issues - which are really rare - seem to have more occurred after I've been sedentary. I do some exercise - get some good post exertional malaise going - and that has seemed to help them go away. Pretty small sample size though.

Scary stuff!

Yeah I would like to get an event monitor, which is something one can keep for i think even up to months at a time. If the event happens u simply press the device and hold the record button to your chest and it records the heart rhythm. To me it feels like what I used to get in the old pre CFS days - SVT (in which the heart can go suddenly anywhere from 200-300bpm within seconds, due to an electrical loop in the elec pathway of the heart).

The difference is, I seem to only get these big heart events during my sleep now. I suddenly wake up from it and it's off like a rocket, and very hard to function while it's happening.
Deep breathing and attempting to stay calm (extremely hard during this) allows it to settle after 3-10 minutes. So i'm really not sure what it is, but its very scary. It only happens when i have a bad virus, which ive had several of all winter, and a bad one still right now.

Inducing malaise to help the heart? That's an interesting one, haven't heard of that before Good that something works though! Most people don't have my level of heart issues though thankfully.

 

[Chriseraphim]

I have constant heart palps. Have for years. I recently discovered a huge part of it is mast cell and histamine problems. There is no way any doc would have figured that out. In fact landing in the ER with no heart issue started mt discovery. Once I started dealing with that, my heart palps have gotten hugely better

There are so many things this could be. It may not even be related to your heart.

I'd see about getting a holter monitor just to rule out cardiac stuff then like the rest of us figure it out on your own.

Could be adrenals.

And Cort is right but good like finding a doc who understands disautonomia.

You just have to eliminate stuff and also hunt in your own. Gooe luck

Also please
Go back and edit your post by adding paragraph. It's very difficult for many of us to read hige blocks of text. @Cort

Thanks for the response. Yes I've had those type of palps for many years too due to being very allergic and intolerant to everything. Even when young and pre CFS I used to get palps and bowel cramps from eating indian food or anything rich and spicy. Bad palps from italian food for instance with tons of concentrated tomato in it (amines). Those palps I can have any time due to foods or chemicals etc, but the waking in the night with sudden 200bpm is totally different. I will have to get further tests for this stuff.

Thanks again guys.

 

[Tammy7]

I feel for you..............those heart symptoms can be so scary. All my weird heart symptoms are now gone after working on viral issues.
Sending hugs.

 

[Seven]

I hear you! I was given beta blocker and my issues are so much better. Over time it corrected itself even though if I over do it goes up. But I don't take as much as before (started on 20mg 3 times a day ) now I take 20mg once - twice a day. Also my Resting heart rate was way high 101bpm and my AT is 115 so I would get tired just by standing up. But since i take beta blocker my RHR has gown down too.

 

[Merida]

@Chriseraphim
What an ordeal. You mention virus, so this may be the major cause for these night time heart rate episodes. However, Is your neck okay?
I began having positional-related very high blood pressure spikes after a lot of dental work. A traditional osteopath worked on my neck and stopped these episodes. Also, the DINET people are helpful.

Hugs.

 

[Merida]

@Chriseraphim
I found some important information in the paper written by Dr. Diana Driscoll, a therapeutic optometrist, who is also an Ehlers- Danlos patient.
This paper can be found at www.theilcfoundation.org it is titled, " The Driscoll Theory." " the Role of external Communicating Hydrocephalus, Mast Cell Disease and CCSVI as the cause of POTS in Ehlers-Danlos Syndrome."

What Dr. Driscoll discusses is extremely important. I have documentation ( via expert neurosurgeon/ CINE MRI flow study) that I have altered CSF flow and drainage in the lower brain / upper neck.

 

[Merida]

Geez having difficulty with this post. Here is a quote from Dr. Diana Driscoll's paper (page 18), "When the patient becomes supine, arterial blood more easily enters the brain as it is no longer working against gravity, nor is it pooling in the lower extremities. However, the CSF and venous blood once again do not drain well and the ICP ( intracranial pressure) increases."

"When the patient is initially supine, the brain lifts off of the cranial nerves. However, over time the ICP ( in the subarachnoid space above the brain) continues to increase because the CSF and venous blood once again does not drain well in the supine position resulting in an increase of symptoms of brain and brain stem compression."

" The patient again becomes symptomatic and if asleep, is often awakened by a burst of tachycardia accompanied by a feeling of suffocation."

I have no doubt she is correct for many/most/ or all of us. I do not have Ehlers-Danlos, but I have documented ( by neurosurgeon) small spaces in my lower skull. ( short clivus, steep angle of the tentorium, small posterior fossa) I had very few symptoms and was very active and fine until a neck injury. My son developed the whole syndrome after a virus - which was capable of causing inflammation in important areas in the central nervous system.

But what my son and I have in common are scoliosis and probable skull/ brain structures that are smaller or a little different than 'Normal." This is why chronic fatigue syndrome has been ( in most cases) very difficult to treat, and everyone is a little different. There is much individual structural variation and possibly several different viruses capable of causing mayhem in the CNS.

Thank you Dr. Diana Driscoll !

 

[Chocolove]

@Chriseraphim

It's always 10x worse and more frequent when I have a bad virus, and this winter I have had this huge virus for 3 months straight or more with lots of these crashes.

I've had to inject cortisol at times because its been so bad and felt on the edge of blacking out (I have adrenal insufficiency).

These heart palpitations are common when adrenal function is low, which creates electrolyte imbalance. Basically it sounds like you are going into adrenal crisis which can quickly be fatal. A long infection causes extreme adrenal hormone depletion. Endocrinologists (should) know that one needs to increase dosage of corticosteroids when fighting infections or in emergencies. I would call your endo immediately and at first sign of any infection. Still, Endos are mainly familiar with diabetes not adrenal insufficiency, so they might not be much help. Doing your research online and referring them to the research may help. Yep, you may have to train your Dr. But there is help.

Don't think about drinking gatorade (which contains potassium) to replete electrolytes. Those with the adrenal insufficiency kind of electrolyte imbalance don't need potassium, which can make it worse. They need sodium. So if you crave salt, eat it - you need it. You really need to research adrenal insufficiency, adrenal crisis and make contact with others with adrenal insufficiency immediately in order to learn how to stay alive.

You will find more answers and support in the Addison's forums:
http://www.addisonssupport.com/about.html
http://adrenaladvice.proboards.com/
https://www.facebook.com/Addisons-Disease-Support-group-300817853326387/
http://www.addisons.org.uk/forum/
http://www.nadf.us/
https://pituitary.org/component/com_kunena/Itemid,243/catid,34/id,2900/view,topic/

Hang in there, you are young. They are doing some very interesting research which may greatly improve life for those with adrenal insufficiency by using a different main corticosteroid. It will reduce the munchies caused by the drug currently in use.