My very, very worst symptom is back :-(

[Gingergrrl]

I had this symptom when I was taking a beta blocker for my tachycardia. It cleared up eventually after I stopped the beta blocker. My pulse is higher now than it was on the beta blocker, unpleasant for sure, but I think artificially suppressing the heart rate in POTS can in some ways create worse problems than what you started off with, like worsening hypotension and hypoperfusion. I think overall beta blockers for IST and POTS are a misguided approach but I totally understand where you're coming from. There was a time when I thought I was going to die if I didn't take a beta blocker so I sympathise. It's a difficult catch 22 situation.

@Sidereal Do you mean that you had tachy in your sleep while taking a beta blocker or do you mean that you had low BP? Just want to make sure I understand! I have tried to go off the beta blocker many times but every single time the tachy returns within a two week period and my BP remains low regardless if I am on or off the beta blocker. Even with the Midodrine my BP remains low and it seems to have a set point and is just stuck there!

Without the beta blocker, my HR would be going into the 160's and 170's throughout the day and night which the doctors felt was dangerous and I was unable to live that way. Did you find a med that worked as an alternative?

 

[melamine]

I tried LDN but it gave me severe insomnia where I was awake the entire night with only 1.0 mg.

I think you're doing the right thing with the Atenolol for now.
I am still in an early trial phase of LDN. Although this is probably not a good time for you to start it at night, have you considered using it during the day? I need to do more research on that but that is what I am doing. Also breaking up the dose by 3. Again, I don't know if I am undermining the effects but doing it this way to acclimate myself to it and test my tolerance with the least likelihood of side effects.

 

[Sidereal]

@Sidereal Do you mean that you had tachy in your sleep while taking a beta blocker or do you mean that you had low BP? Just want to make sure I understand! I have tried to go off the beta blocker many times but every single time the tachy returns within a two week period and my BP remains low regardless if I am on or off the beta blocker. Even with the Midodrine my BP remains low and it seems to have a set point and is just stuck there!

Without the beta blocker, my HR would be going into the 160's and 170's throughout the day and night which the doctors felt was dangerous and I was unable to live that way. Did you find a med that worked as an alternative?

Yeah, I meant the waking up at 2 am with pulse of 160 thing. No, there is no medication that helps my tachycardia directly. I totally understand why you take the beta blocker currently. I did too when my tachy was at dangerous levels. I was able to get off it once I raised my blood volume a bit and the adrenaline came down spontaneously.

 

[Gingergrrl]

I think you're doing the right thing with the Atenolol for now.
I am still in an early trial phase of LDN. Although this is probably not a good time for you to start it at night, have you considered using it during the day? I need to do more research on that but that is what I am doing. Also breaking up the dose by 3. Again, I don't know if I am undermining the effects but doing it this way to acclimate myself to it and test my tolerance with the least likelihood of side effects.

@melamine I actually wish that I could have taken the LDN and I know it has helped many people and is a great immune modulator. At the time it was prescribed to me by my former ND (and I am no longer seeing her) and she told me that 1.0 mg was the lowest dose which I now know is not true. I would have to get a new prescription from a new doctor and am afraid to start anything new right now as I am in the process of trying a few other new things.

I was also told by my ND and compounding pharmacist at the time that it had to be taken at night to be effective but I have now learned from several on PR that they take it during the day (which I did not try.) My other concern is that each month when I have severe cramps, I have to take a painkiller for 2-3 days, and this could mess up the LDN.

Thanks for saying you think I am doing the right thing with the Atenolol for now and I can't imagine stopping it unless I had a viable alternative. My frustration is that I didn't do anything different and had the extreme tachy last night anyway! It just made me feel like I was back at square one with no progress after all this time.

 

[melamine]

and the adrenaline came down spontaneously

@Sidereal - Do you think there's any chance adrenaline is driving this at all? When I was taking adrenal cortex I thought it moderated my energy in a good way (more awake am, more tired pm). When my heart symptoms were at their worst day and night, my adrenaline was also low by 12 hr saliva test measure. Unfortunately I was not prescribed anything by the doctor who ordered the test and was too ignorant at the time to feel confident in self-treating.

My frustration is that I didn't do anything different and had the extreme tachy last night anyway!

@Gingergrrl - It could be a fluke, so I wouldn't assume - yet. I hope you are able to resolve this soon. If you decide you just want a small amount of compounded LDN without having to go through a doctor let me know.

 

[Gingergrrl]

Yeah, I meant the waking up at 2 am with pulse of 160 thing. No, there is no medication that helps my tachycardia directly. I totally understand why you take the beta blocker currently. I did too when my tachy was at dangerous levels. I was able to get off it once I raised my blood volume a bit and the adrenaline came down spontaneously.

Hi @Sidereal So, do you mean that you started the beta blocker and THEN started having tachy up to 160 in your sleep (so they beta blocker wasn't even working?!!!) I still want to make sure I fully understand. In my case, I got very sick in Jan 2013 (what I now believe was the re-activation of EBV but did not know this and was not tested until over a year later.) Two weeks after the EBV re-activation, the tachy in my sleep started.

I actually took zero meds at that time (not even vitamins!) and did not know what was happening. I tried everything I could think of until I saw first cardiologist who diagnosed me with IST and gave me Metoprolol. It worked but had some side effects and was short-acting (like 6-7 hours) so I switched to a cardio who was heart rhythm specialist and she felt Atenolol was better for me and longer acting.

I am trying to raise my blood volume by every way I can think of which is why I fought so hard for the IV saline which turned out to be a disaster. I wish I knew which was the best treatment for me and I would try it in a heartbeat (no pun intended .)

I have very high hopes for magnesium by nebulizer but had some set backs due to initial Mag sulphate causing me headaches. So I ordered Mag Chloride but got the ratio wrong on my first attempt and am going to re-try with the proper ratio. I am hoping the nebulizer helps with my shortness of breath, tachycardia, chest pressure, etc. It is recommended by Dr. Sarah Myhill if anyone wants the info.

 

[Gingergrrl]

@Sidereal - Do you think there's any chance adrenaline is driving this at all? When I was taking adrenal cortex I thought it moderated my energy in a good way (more awake am, more tired pm). When my heart symptoms were at their worst day and night, my adrenaline was also low by 12 hr saliva test measure. Unfortunately I was not prescribed anything by the doctor who ordered the test and was too ignorant at the time to feel confident in self-treating.


@Gingergrrl - It could be a fluke, so I wouldn't assume - yet. I hope you are able to resolve this soon. If you decide you just want a small amount of compounded LDN without having to go through a doctor let me know.

@melamine Were you also having the extreme tachy waking you up in your sleep? Also, when you said your adrenaline was tested by 12 hour saliva test, is this the same as the 24 hour saliva cortisol test? My cfs doctor just mailed me a kit so I can re-do this test but I was under the impression that it measures cortisol (not adrenaline?)

re: LDN, thank you for the kind offer but if I do try it again, I will do it with my doctor as I would want this one carefully measured and checked due to my thyroid. I don't rule it out but it is not at the top of my list of things to re-try at the moment.

 

[melamine]

@Gingergrrl - It was a 12 hr cortisol test and I think it's excellent that you are getting tested. 24 hr all the better.

I had an undiagnosed heart infection associated with an acute upper respiratory infection, and was being denied referral and proper testing and treatment. I was experiencing symptoms of stage 3 heart failure at rest, waking with a pounding heartbeat in the same way that it was happening during the day, like it was working very hard to perform. I felt like I was dying for months. I also developed these weird muscle spasms and myoclonus.

The symptoms improved over many months but never resolved and then there were several more years of extreme palpitations daily. Same feeling of heart failure at rest. Refused proper assessments and ignored or mocked by doctors each time I sought help. I am only now, 9 years and chronic damage later, being referred properly by an understanding doctor. Whether the cardiologist addresses the problem once and for all, at least I have their orders to do so in writing this time!

BTW, I don't know what it was, but the symptoms stopped almost magically immediately after I had a cardiac cath. test several years later. I had also just begun using enzymes and used some systemic ones right after the surgery as well. I will never know what caused them to suddenly resolve. I've developed more insidious cardiopulmonary symptoms since then, but the other heart symptoms have not returned in that manner.

 

[Gingergrrl]

@melamine

@Gingergrrl It was a 12 hr cortisol test and I think it's excellent that you are getting tested. 24 hr all the better.

I wasn't sure when you said it measured adrenaline if this was the same test I will be doing to measure cortisol.

I had an undiagnosed heart infection associated with an acute upper respiratory infection, and was being denied referral and proper testing and treatment. I was experiencing symptoms of stage 3 heart failure at rest, waking with a pounding heartbeat in the same way that it was happening during the day, like it was working very hard to perform. I felt like I was dying for months.

How did you ultimately find out that you had a heart infection and do you know what the infection was? Did you have a heart biopsy? My cardio told me that I absolutely did not have myocarditis and I was in the cardiac unit for five days in Sept having a bunch of tests. But my symptoms are different than yours in the sense that if I am lying down or sitting but awake (whether for one hour or an entire day, I have complete symptom relief and no tachycardia or shortness of breath.) The tachycardia only happens in my sleep (but that had stopped for at least 6 mos until last night) or due to a positional change which is more similar to POTS.

Refused proper assessments and ignored or mocked by doctors each time I sought help. I am only now, 9 years and chronic damage later, being referred properly by an understanding doctor. Whether the cardiologist addresses the problem once and for all, at least I have their orders to do so in writing this time!

Wow, and I am so sorry that happened to you.

BTW, I don't know what it was, but the symptoms stopped almost magically immediately after I had a cardiac cath. test several years later.

Why did you have the cardiac cath test and is that when you had a biopsy (if you had one?)

I had also just begun using enzymes and used some systemic ones right after the surgery as well. I will never know what caused them to suddenly resolve. I've developed more insidious cardiopulmonary symptoms since then, but the other heart symptoms have not returned in that manner.

What kinds of enzymes did you use? Also, curious what your symptoms are now since you said some of them suddenly resolved?

 

[taniaaust1]

I dont have much to say on this as I havent had this issue myself (unless it was going on with the adrenaline rushes which used to wake me up during the night? Do you get like an adrenaline rush feel with this?) but want to wish you the best at finding the solution to it.

As the others said it may be a compensatory thing if your BP got too low during night on the latest occassion. or maybe it could be an adrenaline spike? if so, maybe adding something like a very small amount of clonidine into the mix if doctors thought was fine eg quarter or a half of a pill, could help some. I suggest to try not to worry too much seeing its only happened once again as maybe it wont start happening regularly again? and it may of been a once of again thing..

Seeing where you are in your menstrational cycle, maybe the hormonal shift helped to trigger off the latest episode. My cycle can affect one of my dysautonomia symptoms, for me my bowel issues but it never does the same thing each month but occassionally at that time of the month, it can have quite an effect.

edit.. added in the part about hormones. Hope you see it.

 

[Sidereal]

@Sidereal - Do you think there's any chance adrenaline is driving this at all? When I was taking adrenal cortex I thought it moderated my energy in a good way (more awake am, more tired pm). When my heart symptoms were at their worst day and night, my adrenaline was also low by 12 hr saliva test measure. Unfortunately I was not prescribed anything by the doctor who ordered the test and was too ignorant at the time to feel confident in self-treating.

Your adrenaline (i.e. epinephrine) was low in saliva or do you mean cortisol?

 

[melamine]

How did you ultimately find out that you had a heart infection[/QUOTE

My self-diagnosis was based on symptoms and other factors as well, which later tests more or less confirmed - so-called "trivial" damage to valves and pericardium. Most doctors and all cardiologists I was seeing pretended everything was normal. It was a sonogram ordered by a pulmonologist a few years later that revealed things that did not show up in the cardiologist's tests (which I don't believe were appropriate for dx of infection).

Why did you have the cardiac cath test

The cardiac cath. was done about 3-4 years later maybe. I'm not sure why it was done instead of what to me would seem like more appropriate tests for my symptoms and history.

There has never been a biopsy but of the many infections I've been tested for, all three that showed high titers are associated with endo and pericarditis. Whether the next cardiologist decides to test remains a question.

 

[melamine]

Your adrenaline (i.e. epinephrine) was low in saliva or do you mean cortisol?

Yes, I misspoke - it was cortisol.

 

[Sidereal]

Hi @Sidereal So, do you mean that you started the beta blocker and THEN started having tachy up to 160 in your sleep (so they beta blocker wasn't even working?!!!) I still want to make sure I fully understand. In my case, I got very sick in Jan 2013 (what I now believe was the re-activation of EBV but did not know this and was not tested until over a year later.) Two weeks after the EBV re-activation, the tachy in my sleep started.

Well, I was having these adrenaline surges at night sometimes before the beta blocker but they got worse when my BP got so low at night on the beta blocker that my body thought it was dying.

 

[Tired of being sick]

@Gingergrrl
You have low blood volume to begin with so as soon as you mentioned menstrual,I knew this is what most likely reactivated your POTS during sleep......

 

[AndyPandy]

Thinking of you @Gingergrrl. Hope you find some answers.

 

[Sushi]

I have had many episodes of tachy during sleep but for me it was Afib. Have you had a HR monitor on during these tachy episodes to make sure it is your regular form of tachy and not an arrhythmia of some sort? I ask because my cardio said that the vagus nerve was activated during sleep and that this could cause tachy (and for me an arrythmia). For the last six months (fingers crossed) taking Taurine throughout the day seems to have prevented it. There are studies that show why this could be true--not only for Afib but for other forms of tachy.

At the time it was prescribed to me by my former ND (and I am no longer seeing her) and she told me that 1.0 mg was the lowest dose which I now know is not true. I would have to get a new prescription from a new doctor and am afraid to start anything new right now as I am in the process of trying a few other new things.

If you still have some LDN, it is simple to dissolve it in distilled water and measure out a very accurate dose with a syringe--just requires some simple math. though I know you would be hesitant to try anything new ATM. Just to keep in mind for the future.

And yes, waking up with a heart rate of 180 is about one of the worst symptoms I have experienced! I fully sympathize.

Sushi

 

[Gingergrrl]

@melamine

My self-diagnosis was based on symptoms and other factors as well, which later tests more or less confirmed - so-called "trivial" damage to valves and pericardium. Most doctors and all cardiologists I was seeing pretended everything was normal. It was a sonogram ordered by a pulmonologist a few years later that revealed things that did not show up in the cardiologist's tests (which I don't believe were appropriate for dx of infection).

I am so sorry your cardio was so cavalier and negligent with your symptoms. I feel like my third cardio has been thorough yet is now saying everything is "autonomic" and not much else we can do. But I have to believe there is still something more than can be done b/c I am still so ill.

The cardiac cath. was done about 3-4 years later maybe. I'm not sure why it was done instead of what to me would seem like more appropriate tests for my symptoms and history.

I'm not sure either and was just curious.

There has never been a biopsy but of the many infections I've been tested for, all three that showed high titers are associated with endo and pericarditis. Whether the next cardiologist decides to test remains a question.

If you are comfortable sharing, I was wondering which three infections correlate with heart infection? I hope you don't mind all the questions!!! My two active IgM infections are EBV and VZV and then I had a few others that were positive on IgG but not on IgM. I really hope your next cardio is very thorough and you get to the bottom of this.

 

[Gingergrrl]

@Gingergrrl You have low blood volume to begin with so as soon as you mentioned menstrual,I knew this is what most likely reactivated your POTS during sleep......

@Tired of being sick First, I really like your new avatar!

But what I wanted to say is you made a really good point! I've been reading everyone's posts really carefully and in addition to being in severe pain from cramps which can cause overexertion, and what @taniaaust1 pointed out re: hormones can cause tachycardia, I wasn't thinking that the actual blood loss can further lower my low blood volume. I am so glad I posted this and got really great feedback from everyone.

Sorry to be graphic but I figure you guys probably grew up with moms, sisters, girlfriends (or wives & daughters) so this isn't exactly news but I know some men are squeemish about it . But we're all friends here .

 

[Gingergrrl]

Well, I was having these adrenaline surges at night sometimes before the beta blocker but they got worse when my BP got so low at night on the beta blocker that my body thought it was dying.

@Sidereal Thank you and that makes sense. I checked my BP about 15 min after the episode and it was actually higher than usual (102/72 which is high for me) so I don't suspect that an extremely low BP triggered the tachycardia. Although anything is possible!