Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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My very, very worst symptom is back :-(

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Gingergrrl, Dec 12, 2014.

  1. Gingergrrl

    Gingergrrl Senior Member

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    When my entire ME/CFS started (about 10 months after severe mono from EBV) I started having unexplained tachycardia during REM sleep which would abruptly wake me up with HR as high as 177 bpm. It took about a year and a half but I got this under complete control with Atenolol and haven't had an episode in about six months. I've still had POTS episodes where during the day, I could stand up and HR goes between 120-140 but these are not as bad b/c I am awake!

    Well, last night I was exhausted and went to sleep around 7:30 pm and then around 9:50 pm I was awoken from a dream (not a nightmare, just a random dream) with HR of 164 bpm. When this happens it is very scary and confusing and I can't breath or talk plus my hands and arms are numb (I guess b/c the blood is trying to get to my heart.) All I can do is wait it out and my HR goes back to normal within a few minutes. I took an extra 1/4 Atenolol after the episode but it takes me about a full day to recover.

    I didn't do anything exerting yesterday or change my Atenolol dosage (prior to the episode) so I was trying to figure out why this occurred. I had very severe menstrual cramps for two days where it literally feels as if a knife is stabbing me in the stomach and back (I am so sorry for the TMI- especially for the men :eek:) and trying to figure out if this was the cause. I had to take pain pills for the cramps but I have done this for many years and nothing new or different. When I took a shower (using shower chair) I was so dizzy, it was the first time I thought I could faint if I didn't have the chair.

    I am now going to increase my Atenolol from 1/4 pill at night to a 1/2 pill at night (and can actually increase it further per my cardio at my last appt.) I just hadn't b/c it wasn't needed and I don't want to lower my BP which is already low but the tachycardia is by far worse. And just to clarify from multiple tests over a three year period, the tachycardia is all sinus tachycardia and no arrhythmia.

    What is the most discouraging and frustrating to me is that the extreme tachycardia in my sleep is by far the worst symptom of everything I have experienced. It was such a relief when it stopped that I was then able to say to myself (no matter what else was going on) that, "Well, at least that is gone!" and it felt safe to go to sleep or take a nap without worrying about being woken up with my HR in the 160's and 170's.

    Now today I feel as if I have been hit by a truck and it feels like my heart and chest are bruised. For whatever reason my pulse pressure is really low (closer to 20) when it had been 30 or even above for weeks.

    Has anyone else had this symptom and did I do something wrong to make it return? I know it is pure dysautonomia but did I do something to trigger it to come back that I am not aware of? I feel so discouraged b/c if the tachycardia in my sleep is not better, then literally NOTHING is better and I am back at square one.
     
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  2. adreno

    adreno PR activist

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  3. Gingergrrl

    Gingergrrl Senior Member

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    @adreno Do you mean for tachycardia during sleep or in general?
     
  4. adreno

    adreno PR activist

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    Just tachycardia in general.
     
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  5. Gondwanaland

    Gondwanaland Senior Member

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    I am so sorry @Gingergrrl ! I know nothing about heart disease, but I would get a complete thyroid panel.
    TSH, T4, T3, free T4, free T3 and reverse T3.
     
  6. Revel

    Revel Senior Member

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    Can't help with your queries, I'm afraid, but wanted to send my best wishes. Sorry you're having such a horrible time of late :hug:.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    @adreno What doses do you take of these and do you take them every day or just when you have tachycardia?

    @Gondwanaland I've had a lot of tests and do not have any traditional form of heart disease and it all appears to be dysautonomia (which in some ways is even more frustrating b/c my brain is apparently sending the wrong signals to my heart and I don't know how to change this!!!) I have Hashimoto's and have had all the thyroid tests you've mentioned although I am due to have them again before my next Endo appt in Jan. I am going to ask my Endo to run the full panel of everything that he ran at my first appt in Oct 2013 to see if anything has changed.
     
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  8. melamine

    melamine Senior Member

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    @Gingergrrl, If you have POTS, why are you taking Atenolol for hypertension? Is it possible the rapid pulse during sleep is a response to a hypotensive episode preceding it?
     
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  9. Gondwanaland

    Gondwanaland Senior Member

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    Be sure to get ALL of them, if possible include the thyroid antibodies as well! :thumbsup:
     
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  10. Gingergrrl

    Gingergrrl Senior Member

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    @melamine I do not have hypertension and am taking the Atenolol to control the inappropriate sinus tachycardia (IST) and it is the only med that controls it. My BP is always low. Without the Atenolol, I was having these episodes in my sleep multiple times every night and literally never sleeping. With it, the episodes reduced and then stopped completely for six months (until last night :aghhh:.)

    I have both Hashi's antibodies and am trying to reduce them with being gluten free and taking Selenium plus Armour Thyroid. My Endo does not think the tachycardia is from my thyroid and agrees it is autonomic.

    ETA: Since this all started in 2013, I have never been hyperthyroid (by any blood test) and was even tested for the Graves antibodies but was completely negative.
     
  11. Valentijn

    Valentijn Senior Member

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    @Gingergrrl - Do you have a pulse oximeter? It could be a bit helpful in determining why your heart rate is getting so high. If it's rising because your oxygen saturation is falling, it might be a bad idea to take a drug to reduce the tachycardia.
     
  12. melamine

    melamine Senior Member

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    You do have a complicated situation. It has obviously helped, yet it would seem to have an effect that could potentially make your other condition worse, which still leads me to believe that the two problems are interrelated and that treating one has the potential to aggravate the other. I would talk to the doctor who prescribed the Atenolol asap. Maybe he/she would want to make a dose or schedule adjustment?
     
  13. Gondwanaland

    Gondwanaland Senior Member

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    Going GF didn't help w/ my antibodies, nor did Selenium. Levothyroxine helped a little, but then I had to supplement vit D again and lost my gains. I am looking forward to taking LDN to help w/ autoimmunity.
     
  14. adreno

    adreno PR activist

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    I take 300 mg pantethine and 250 mg CDP-choline daily, but I suspect doses are individual. Acetylcholine is a mediator of the parasympathetic system, and offsets norepinephrine (which is likely the mediator of tachycardia).

    I am generally not a fan of beta-blockers long-term. What you want is to regain homeostasis, and you cannot do that by blocking the adrenergic receptors. This is just my personal opinion.
     
    Last edited: Dec 12, 2014
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  15. Sidereal

    Sidereal Senior Member

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    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.
     
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  16. Gingergrrl

    Gingergrrl Senior Member

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    @Valentijn I do have a pulse oximeter although I did not think to use it last night. But in the past when I had these episodes (which were constant) my oxygen levels were normal. When they first started, I had an overnight sleep study which ruled out sleep apnea and did not show any drops in oxygen when I was sleeping. But if it happens again, I will definitely check the pulse ox meter and thank you for reminding me.

    ETA: The only time I had a huge drop in the pulse ox meter was the incident with the IV saline.
     
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  17. melamine

    melamine Senior Member

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    I had cardiac issues at one time relating to an infection and pulse oximeter readings were misleadingly normal, in that they bore no information useful to diagnosing the problem.
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    @melamine Thank you (to you and everyone) for all the feedback and I am going to answer every single one in trying to sort this all out. The beta blocker has definitely helped me and without it, I would have zero quality of life. I have now seen a total of three cardiologists since beginning of 2013 and all feel it is the right med for me.

    I tried other meds including a calcium channel blocker and one dose dropped my BP so low that I threw up and almost fainted and they discontinued it immediately. I also tried Florinef which made me sick and gave me daily headaches. The Atenolol is the only thing that controls the tachycardia (both in my sleep and POTS type episodes.) At my last appt with cardio, he actually wanted to raise the Atenolol.

    Also to clarify, I take a super low dose. The lowest dose pill is 25 mg and I take a 1/4 pill (6.25 mg) twice a day. For a long time I was only taking it once a day but we upped it to twice. He wanted me to take 1/2 pill (12.5 mg) twice per day and since the episode last night, I am going to take 1/4 AM and 1/2 PM. My cfs doctor and Endo also feel this is the right med for me so everyone is in agreement (doctor wise, I mean.)
     
    Last edited: Dec 12, 2014
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  19. Gingergrrl

    Gingergrrl Senior Member

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    @Gondwanaland My Endo recommended Selenium and going gluten free to reduce inflammation and lower the attack of the antibodies on my thyroid so I figured it can't hurt. I also have very low Vit D unless I supplement and take an emulsified liquid Vit D drops at night which have helped raise my levels. I tried LDN but it gave me severe insomnia where I was awake the entire night with only 1.0 mg.
     
  20. Gingergrrl

    Gingergrrl Senior Member

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    @adreno Thank you for the info on pantethine and choline and I am going to google them when feeling better. I suspect the doses are individual too as with everything.

    As far as beta blockers, it's not that I am a fan or advocating them for others, I just have not found anything else that has brought symptom relief. Without the low dose Atenolol, the IST was constant for over a year (and the POTS type episodes came later.) The Atenolol was completely controlling the IST, close to completely controlling the POTS, and even helped with the "angina" type chest pain and possible microvascular spasms. I would love to find an alternative that works if there is one but not sure what else it would be?!!!
     

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