New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
Discuss the article on the Forums.

Need Help...More Symptoms Heart and Breathing

Discussion in 'General ME/CFS Discussion' started by David_101, Sep 9, 2018.

  1. David_101

    David_101

    Messages:
    26
    Likes:
    15
    I seem to be having more symptoms show up and it's hurting my quality of life. My doctors at Tufts have been completely useless in regards to diagnosis, and specialists have been bouncing me around with no answers.

    I'm scheduled for a colonoscopy from my GI doctor at tufts and an echo from my cardiologist.

    Basically, I had a cold about 8 weeks ago. Since then here are my symptoms:

    - Hearing loss on my left ear

    - cold intolerance (I would sweat easily in heat and have goosebumps at the same time after being exposed to a cold environment for awhile). Body doesn't warm up right.

    - night sweats every night and waking from irregular sleep. Wake up every hour heart palpitations.

    - GI. constant urge to go to have bowel movement even after I went. I can hold it in but uncomfortable especially when I lay down.

    - heart palpitations and short of breath. Tight when I breathe (Thought it was Klonopin withdrawal as I stopped it 10 days ago...but It was so bad I felt like I couldn't catch my breath last week and my heart raced out of control with irregular beats. Ended up in the ED via ambulance where they gave me metaprolol and ativan. I still feel short of breath and lightheaded).

    - slight imbalance when I walk but not noticeable.

    - dry eyes and mouth (about 5 weeks ago. Maybe Sjogren's? Tested for SSA, SSB, and ANA, Rhumo factors... but all normal. Was told it may be too early for antibodies to show up).

    As for lab work:

    ANA (1:160 seems off but rhumotologist refuse to investigate)
    SSB, SSA (sjogren's although I may be early)
    TSH, T4
    Lyme and other tick diseases
    Stool sample for c diff and bacteria
    All general normal blood work

    They've also tested my blood pressure lying down, sitting, and standing up in the ED which I assume was normal as well.

    My symptoms are stacking and I woke up a few hours ago with palpitations, and feeling a short of breath.

    Does anybody have any idea what is happening? My symptoms seem to be stacking and it's scary. Frustated by doctors who don't have a clue. Was trying to schedule neurologists for autonomic problems but they are booked months away.
     
    Last edited: Sep 10, 2018
    ljimbo423 and Wolfcub like this.
  2. Wolfcub

    Wolfcub Senior Member

    Messages:
    578
    Likes:
    1,340
    SW UK
    So sorry you are feeling all this, David.
    With the exception of Sjogren's, all your symptoms....I've had too. I my case they steadied out and are not so bad now.
    Heart palpitations -10 a minute. Literally missing beats. Faster than normal. "Tight" chest and peculiar breathing, which would come and go like a will o' the wisp! One day I'd be out of breath just going up a few steps. The next day it was fine!
    In my own case, heart checks checked out fine. So did blood pressure.

    My advice would be book the neurologist test anyway. I had to do the same. I had a 4 month wait for the appointment which is end of Sept.

    I wish I could give you clues, practical help, suggestions...I am sure others here will be able to help where I can't.

    But I do feel for your situation, believe me.
     
  3. LINE

    LINE

    Messages:
    92
    Likes:
    150
    USA
    Best guess is infection of some sort. If you are having GI problems then suspect a pathogen in the gut. The gut is most susceptible to infection and there are a few classifications of pathogens such as rogue bacteria, viral, parasitic which would also include protozoa species (giardia, cryptosporidium etc). Some of these pathogens are difficult to detect in spite of multiple testings.

    Magnesium plays key roles in many functions of the body including cardiovascular. Mag loss occurs during any stress which includes the obvious (mental and emotional) but also during biological stress (infections, toxins, trauma etc). Other nutrients are lost during any bouts with stress which include the b vitamins, vitamin C, vitamin E etc. Nutrients may not solve all the problems but will help the system run better.
     
  4. Mary

    Mary Moderator

    Messages:
    4,767
    Likes:
    10,072
    Southern California
    @David_101 - a common symptom of low potassium is palpitations. It can also cause shortness of breath and trouble sleeping. It is not uncommon for persons with ME/CFS to have low intracellular potassium despite normal blood levels. (See https://forums.phoenixrising.me/ind...ded-in-methylation-treatmt.18670/#post-291422) Low potassium has also been linked to dry eyes. Here's one article you might find helpful: https://www.healthline.com/nutrition/potassium-deficiency-symptoms

    A simple safe thing to try which might give you a clue if low potassium is part of your problem is to drink several glasses of low-sodium V8. It's high in potassium, and if your potassium is low, you could very well be feeling better within a few hours. I've had trouble with low potassium despite normal blood work (first discovered this issue after starting methylfolate but was never picked up by doctors). I found I had to take extra potassium daily, and it works. I recommend low-sodium V8 because it's high in potassium and low in sugar. If one of your issues is low potassium, I doubt if a banana or 2 would be enough.

    But to me the night sweats sound like your immune system is definitely having some problems. I don't run fevers any more but when I'm sick I get night sweats instead. It is very frustrating, doctors in general have not been much help to me at all. So I do my own research and experiment on myself a lot, after doing my research. I also use muscle testing - it's helped a lot figure out what's going on at various times.

    @Wolfcub - I'm tagging you here because of your heart palpitations - you might try the low-sodium V8 too -
     
    ljimbo423, Learner1 and Wolfcub like this.
  5. Wolfcub

    Wolfcub Senior Member

    Messages:
    578
    Likes:
    1,340
    SW UK
    That's a good idea @Mary about the V8 drinks. They are very pleasant too. I will try to get some low sodium ones.

    I can't understand though why I got periods of bad palpitations (still do sometimes) yet eat a really high potassium diet. Heart checks OK.
    But would you believe it? No palps at the time I was tested! And no suggestion from the doc to wear a holter monitor.

    Night sweats also from time to time, yet in my case no fever with it! weird. But perhaps by the time the sweat wakes me up and I take my temperature the sweat has already made temp. drop??
     
  6. Mary

    Mary Moderator

    Messages:
    4,767
    Likes:
    10,072
    Southern California
    Hi @Wolfcub - I don't know if you have low intracellular potassium, but you might, despite a high potassium diet. Did you read the link I provided above which explains how and why people with ME/CFS can often have low intracellular potassium, even if their blood work is normal? Our bodies just don't work right, to put it simply! There's an explanation in the thread I linked, it's worth looking at.

    The daily RDA for potassium is 4700 mg. and that's the minimum. So even though you eat a lot of potassium, you still may not have enough, especially with ME/CFS.

    Very often when people start taking B12 and/or folate, their potassium levels will tank rather badly rather quickly. This is because the B12 and folate cause their cells to start dividing more rapidly and doing what they are supposed to do, which requires more potassium. So a functional potassium deficiency can be induced by B12 and folate. It happened to me when I started methylfolate 8 years ago - it boosted my energy nicely for 1 or 2 days and then I was hit with severe fatigue, which, fortunately, I was prepared for, having read Freddd's posts about low potassium and methylation. I titrated up to 1000 mg of potassium a day over a couple of days and the severe fatigue went away. And learned that I have to take extra potassium daily ever since. I actually take more now, even in the middle of the night. And very interesting to me was that I had had that awful fatigue before I started the methylfolate - it was different than PEM, unrelated to exertion - only I never knew what it was and all I could do was wait it out - sometimes it would take days to pass. It was horrible and I don't get that any more since I take a potassium supplement.

    So it is possible your potassium levels may fluctuate from day to day, causing periodic palpitations.
     
    Learner1 and Wolfcub like this.
  7. Wolfcub

    Wolfcub Senior Member

    Messages:
    578
    Likes:
    1,340
    SW UK
    Thank you so much for this @Mary Maybe that is why I feel rotten after a few days on high vitamin B. I hear you about the potassium. Indeed I do! Thanks.
     
    Mary likes this.
  8. Mary

    Mary Moderator

    Messages:
    4,767
    Likes:
    10,072
    Southern California
    It's extremely common, many many people on the board have experienced this. There are a lot of threads here about potassium and B12 and folate - you can do a search for more info. My right foot now acts like a potassium meter for me ;) - seriously! It will start to twitch and I know that my potassium has gotten lowish again. It never gets very low like it used to because I try to stay on top of it. Other people will get palpitations, fatigue, etc. Also if it gets lower I'll get spasms, sometimes painful, in my feet and lower calves. And then if it's low enough, the horrible fatigue.

    If you do start a potassium supplement, I've read it's better to spread the dose out instead of taking a large amount all at once. So I take it several times a day. low-sodium V8 (regular V8 is good too but does not have as much potassium) is a safe easy way to find out if you're dealing with low potassium. But one glass might not be enough and I'd suggest 2 or 3 or even 4 glasses and just see it if helps, and if it does, you can do more reading and see if you want to try a supplement.
     
  9. Learner1

    Learner1 Forum Support Assistant

    Messages:
    3,195
    Likes:
    5,491
    Pacific Northwest
    @Mary Have you found a difference between serum potassium and RBC potassium, like with RBC being low while serum is normal? Or with other electrolytes?
     
  10. Mary

    Mary Moderator

    Messages:
    4,767
    Likes:
    10,072
    Southern California
    Hi @Learner1 - I haven't had RBC potassium testing done. My serum potassium levels were always low-normal - below the average, but not out of the normal range. So I'm assuming my intracellular potassium levels tanked, because my symptoms abated when I started taking a potassium supplement. There was an unmistakable correlation between starting methylfolate and low potassium symptoms. But as I stated above, I even had those symptoms periodically before starting the methylfolate, but never knew what it was. And there was no way I was going to the doctor to say I feel very tired and awful, only this is a different fatigue than when I crash. And no doctor has ever mentioned potassium to me - my levels were always in the normal range. Anyways, the symptoms stay at bay as long as I take my potassium daily.
     
    sb4 likes this.
  11. Mary

    Mary Moderator

    Messages:
    4,767
    Likes:
    10,072
    Southern California
    @Learner1 - I did have an RBC magnesium test done several years ago and much to my surprise my levels were okay.

    I am going to be seeing an endo in October - I want to talk to him about phosphorous. You may have seen me write about it before, how my levels tanked when I started taking B1, similar to what potassium did when I started methylfolate. Phosphorous is a little trickier for me to manage and I'm very careful with doses. I don't really expect anything from the doctor - none have really been able to help with these things so far. I did have a good doctor who unfortunately died, but he's the one who got me on desiccated thyroid instead of Synthroid.
     
    Learner1 likes this.
  12. David_101

    David_101

    Messages:
    26
    Likes:
    15
    Went to the ED yesterday for blood in stool (red towards end like it's soaked). Doctor couldn't determine where it came from but greenlighted my colonoscopy for today, which I'm on my way to now.

    Was given more metoprolol 25mg and ativan (which I hope I dont get addicted to at this point). They said I have bigemi or extra beats in the heart and had more frequent PVC.

    My breathing just feels like I have to be more conscious to get the air in. I'm hoping this is withdrawal from klonopin almost 2 weeks ago and the sporadic ativan I've taken lately.

    Don't want this to be another symptom I simply have to live with. These are really great thoughts. I would try the mag/potassium v8. I have nothing to lose, and anything really helps even if I don't understand all the science behind it.

    As an aside, I've also gotten fed up with the rhuemotologist at tufts. Saw my rhumo and despite having a higher ANA 1:160 nucleor/homo pattern and even ESR (a few weeks ago) the doctor just dismisses it without further testing and led me out the door. No retest, or further investigation despite my symptoms. Ironically, none of these tests were ordered by my rhumo but my neurologist and GI doctor.

    Honestly, without a community like this I would have no idea on the shared frustation for finding the "right" doctor. Being undiagnoised with worsening symptoms and nowhere to turn.

    It's depressing but everyone deserves to be happy and live their life without sickness.
     
    ljimbo423, Mary and Learner1 like this.
  13. David_101

    David_101

    Messages:
    26
    Likes:
    15
    Back in Tuft's ED again at the moment. Woke up with more shortness of breath and heart PVC. Lightheadedness.

    Colonoscopy they said it was a poor prep, but from what they did see it seemed normal. Did a ton of biopsies to rule out things.

    They did run a abg/chem panel. Came back with bad numbers:

    FOR pCO2 49 H 35 - 45 (mmHg)
    FOR pO2 40 L 85 - 105 (mmHg)
    FOR Bicarbonate (HCO3) 30 H 21 - 28 (mEq/L)

    Told ED about it but not sure what good the info is if they don't assess the details.
     
  14. Sarahloudobby

    Sarahloudobby

    Messages:
    39
    Likes:
    71
    Hi everyone.
    I’ve also had a few weeks off palpitations, on and off. I can go all day without feeling any then suddenly notice it. Also feeling like I can’t get enough air, I think I’ve seen people call it air hunger before. I seem to have cycles of symptoms and I am in a period of bad respiratory ones at the moment. I’m planning to visit the doctor on weds but I have been before when I’ve had a tight chest and no real problem could be found as though it was just a sensation I was having that I couldn’t get enough air but actually I do have full lungs.
    Hope you are ok David.
     

See more popular forum discussions.

Share This Page