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Sean's very un-optimal Journal

Discussion in 'My Optimal Journal' started by seanb4, Aug 15, 2013.

  1. notsoperfick

    notsoperfick New Member

    I'm so sorry to hear that you got such a prat whilst you were in hospital, even if you were "malingering" being rude and offensive is not helpful and counter productive for anyone who feels unwell.

    Ok my thoughts. Firstly, you've been struggling with this for quite a long period, actually to me that's a positive because despite all your symptoms and experiences you're still here and you're still upright if a bit shaky. Given my bad experiences with anxiety, I see that a lot of what you've struggled with, I have too. I can relate especially with the heart issues, I know the pounding, the sheer panic it brings, the related stomach discomfort, strange pains and fear, the sweating and the thought you are about to expire. I've had two lots of investigations in 4 years, the halter monitor, the echo cardio gram and I've even had a treadmill test. The cardio consultant sent a letter to the respiratory consultant saying the halter showed what I'd complained about, the double beats, the ectopic and pvc beats and yet it seems there's nothing wrong with my heart, it's normal! This brings me back to where I started, all this has been ongoing for me for several years and I think I'm pretty much reaching acceptance, that actually I'm not going to die because of it. I think much of it is caused by stress, stress has a list of physical symptoms that is a very long one. I don't have the gastric aspects that you suffer with but that's possibly because I enjoy food so not eating it is never on my agenda.

    I think somewhere along the line you've been really stressed, maybe the illness that started all this for you caused a side effect more severe than the antibiotics you were given. Stress can and does provoke many physical symptoms that are really experienced by the sufferer. What's worse I think is that because of the physical symptoms you may not even consider stress as the cause. From my perspective I never had myself down as someone who suffered with stress, I saw myself as a coper, a practical person who could handle any situation. I now believe the reality was quite different, I think I had stress underlying a lot of my day to day life and one day, out of the blue, I had a massive panic attack, was rushed to hospital by my spouse and was eventually diagnosed with ... a panic attack. I was mortified but that didn't prevent me from finding myself having frequent if less severe panic attacks which varied in presentation but which occurred for a long, long time and which I had to learn to deal with.

    I guess what I'm trying to say is you might try looking back to see if something in your life has triggered the situation that you are in. I know what you suffer is real, that you are sick, it's not in your head etc. but it could all be related to a stress response just like diarrhoea that some people experience when they have accidents etc. Some people can vomit, others faint, all related to the vagus nerve reaction that is triggered almost by some unseen switch that's flipped. If you can try to get past the response and concentrate on dealing with the triggers it may be the key. As I said, here I am still, having palpitations and arrhythmia because I'm still obviously affected by stress yet I have educated my psyche to understand I am not dying of some undiagnosed disease and over time I have regained a more peaceful existence, I sleep much much better and I no longer have panic attacks. Sure I still have some things that I haven't managed to change (even some people whose behaviour I can't change but which affects me) but I'm a whole lot better for understanding that I can handle it effectively which I once wasn't able to. Sorry I've gone on, this is just an alternative view which you are quite at liberty to dismiss ;)
     
  2. seanb4

    seanb4 New Member

    @notsoperfick

    Thanks for the reassurance. I have managed this far without dying with my symptoms but now they have changed...

    I think you are right that it is stress, but not of the psychological kind. I think it is physiological. I wasn't really stressed at the time, I had recently moved to student accommodation but everything else was normal...

    Whilst the weird heart symptoms may not be immediately life threatening (although they may be). They are almost certainly harmful long term. Reduced heart rate variability leads to more cancer and less survival.

    I hear what you are saying but I think something else is going on here.

    I have still been struggling with shallow breathes, numbness, light headedness, nausea, etc. I have been trying a TENS at acupuncture points PC6, and ST36 as in some studies this has helped gastroparesis and had a little success. I'm not as bad as I was a couple of days ago but am still in bad shape. Will trail run leaving it on all day today and see what happens...
     
    Jude likes this.
  3. seanb4

    seanb4 New Member

    Been in hospital for the last month, bunch of tests but they found nothing and sent me home.

    I have constant painful heart pounding and lightheadness. I am very weak, have to lay and sit all day. I find it hard to breathe. I keep getting numbness in my arms and legs. Left arm and chest ache. All get worse when I do any activity or especially when I eat. I think I lose conciousness after eating as I have to lay down and close my eyes but it isn't like sleep. I feel like my heart is really struggling to pump blood around. I no longer sweat even in very hot sun.

    Had to quit work.

    Have only been eating under 1000kcals per day for 2 months now.

    On beta blockers which I know are very bad but it's the only thing that lessens the painful pounding heart. I think I'm really fucked now... I cannot do anything as I'm very lightheaded and in pain from my heart. Echochadio and ECG are normal...

    Maybe it is my CFS that causes gut mitochondria and heart to fuck up and I have been pushing it too much.
     
  4. Jenny S

    Jenny S Gold

    Sorry to hear you're struggling so much Sean. Don't give up, unfortunately I can't give you any medical advice, but as you know there are plenty of knowledgable people on forum, hopefully someone will respond quickly with some much needed advice.
    Sending you cyber hugs :):)
     
  5. PaulG

    PaulG New Member

    Hi Sean,

    I hope you have people around who can help you through this time, if not please contact health and social services so at least someone can check up on you, have conversations, make sure you are tracking ok.

    Can you reflect on any alternative treatments you did in the past that helped you most with your heart and gut issues.

    Do you have any options around temporarily changing your environment like staying with a relative or friend.

    Did you look into fecal transplants?

    The Quantlet which is due to ship sept/oct may be a big help to you.

    Can you list your recent tests results.

    Try and eat more if possible.
     
  6. Lahelada

    Lahelada New Member

    Hi Sean ,sorry to hear that. I am glad that they are taking you seriously though. The ECG was done on you while in a standing /sitting position or on a tilt table or lying only? Have you had a holter done?
     
  7. seanb4

    seanb4 New Member

    @Jenny S Thank you.

    @PaulG Hey Paul, I've moved back in with parents for time being. Different enviroment but probably worse. I have had heart pounding for 5 years now, sometimes servere but I always pushed through it, probably stupid, but I didn't have much of a choice. It got quite bad about 2 years ago and I solved it by cutting calories, going full keto, and increasing fish, this stopped the bad symptoms for about 4-5 months but then it came back. That time I then did lots of CT and magnesium oil and I got rid of the bad symptoms again, probably due to growth hormone but I have stopped CT since and the new worst its ever been heart symptoms appeared in June as I was messing about with Methyelene Blue, sugar and folate. These things increased my already fast heart rate and worsened the pounding, I suspect after 5yrs of this my heart is worn out.

    My plan of action currently is try to find someway to get more calories, eat full keto, get lots of rest, grounding and sun where possible, and hope I last long enough to the quantlet arrives however I'm fairly sure that it will only help slightly and not come close to fixing me though...

    ECG, Echocardiogram, blood pressure all normal.
    Endoscopy, Pregnent lady scan, MRI of gallbladder/liver all normal.
    Some blood and Urine tests, including an endocrine one all normal.
    Psych evalutaion normal.
    My standing vs lying blood pressure was 75-105, 90-145, 85-135. Massive jump in heart rate upon standing which seems to be POTS which would make sense as many with CFS have this and the symptoms match, problem is I get the same symptoms lying down and especially when eating. Docs werent convinced but after banging on about it they agreed to see me as an out patient at a clinic that can diagnose it. Getting an official diagnosis wont help me much as it is just more symptoms of the mysterious problem.

    I seem to be stuck in the unfortunate position that because my symptoms are not clear for a doc to see and the tests come back normal, that they all seem to think it's in my head. If I hear the word anxiety again I might blow my brains out.

    I had a gastric emptying study last year and it came back borderline gastroparesis. I have also been diagnosed with CFS.

    Not sure how to move forward at all. I can't even turn over in bed at night without massive heart pounding and trouble breathing, I constantly wake up to numb legs and arms. I need sleep to repair my heart mito...

    @Lahelada They are not taking me seriously anymore I'm afraid, see a POTs specailist as an out patient which could be months away is all I got, I may not have months. It was all done lying down which is when I am at my best.

    On beta blockers my pulse only jumps up 15 when standing but they make my lightheadedness, numbness and weakness worse. I think my heart is struggling pumping around blood so is only doing it to vital organs, the SNS is compensating by making my heart beat harder causing pain but more blood flow, beta blocker stops this meaning less pain and blood flow making digestion even harder...
     
  8. Lahelada

    Lahelada New Member

    I am glad that you know about POTS. My questions were going to that but I did not want to lead you. I presume you have seen the POTS support group? http://www.potsuk.org/
     
    seanb4 likes this.
  9. caroline

    caroline Moderator

    Sean - I wish I could offer you something ......

    I am sending you a very huge hug. I am so glad you are home with your parents xo
     
    seanb4 likes this.
  10. prime1

    prime1 New Member


    POTS = mold infection. MSH tanks, Leptin tanks, ACTH tanks, ADH tanks, Cortisol tanks, and so on...........


    .
     
    seanb4 and Lahelada like this.
  11. Lahelada

    Lahelada New Member

    Meaning the treatment rhymes with everything we learn here. Leptin= light dependent, MSH (melatonin,melanin)= all correct light dependent, hence Cortisol tanks etc etc ...Hello Dr W. ....Hello Dr K.
    Glad you contributed this. Crystallised my thoughts for me.
     
    seanb4 likes this.
  12. seanb4

    seanb4 New Member

    Is all ME/CFS/etc caused by mold/bacteria/virus causing problems for mitochondria?
     
  13. Lahelada

    Lahelada New Member

    From what I understand the other way round . Your mito are leaking like a sieve so anything in your environment a
    affects them .
     
    seanb4 likes this.
  14. caroline

    caroline Moderator

    Sean - I saw the most fascinating program on TV last nite .....and I thought of you.

    It was about the power of our brain over our body.

    There was about 6 people who had very serious symptoms that no Doctors could explain and kept telling them it was all in their head, and they were just faking it.

    This seems to be a relatively new discovery and they have given it a name ......Functional movement disorder.

    There was a neurologist and a physio and a phd doctor talking about it and helping these people. Some of them had spent years with totally the wrong diagnosis and had just given up looking for help.

    If you pm me your email I think I can send you the program
     
    seanb4 and Jude like this.
  15. seanb4

    seanb4 New Member

    Interesting, maybe my mind is sending the wrong signals to my heart and gut...I will send my email. Maybe hypnotherapy would help.

    I have been thinking more about ME/CFS as a cause but not really sure of how it works. I think a virus or other stressful response causes lots of ROS in mitochondria, then the original source of stress / virus goes away but the mito carry on generating too much ROS. Why? I thought they would be cleared out and the new ones that are made wouldn't have this problem. Is it the fault of the immune system or lingering viruses or autophagy not clearing out the bad mitos fast enough...

    Couldnt even stay out in the sub without my pulse going to 120 and me being in massive discomfort. I need to turn this around fast.
     
    caroline likes this.
  16. seanb4

    seanb4 New Member

    Tonsilitis/Ulcer/NSAIDs/PPI/Antibiotics -> M.E/CFS -> Bad Mitochondria -> COMT+/+ comes into play -> High Stress Hormones -> Gastroparesis / Dry Mouth / Poor Sleep / Hyperandrogenic POTs / etc.

    I have noticed that, not all but a significant amount of people with ME/CFS get dry mouth, gastroparesis, and hyperandrogenic pots. Some get the opposite of these symptoms. Maybe the difference is in the SNPs?

    Could be why I am noticing some help (+side effects) from beta blockers yet for others with ME + POTS it would make them far worse...
     
    caroline likes this.
  17. seanb4

    seanb4 New Member

    Last week I went to pain clinic and they were actually okay, recomended accupuncture, know about TENS units, etc. However they also recomended anti depressants because of course. Anyway a couple of days ago I went to my GP to pick them up and I was careful to emphasis my gastroparesis so they wouldn't give me any anticholigenic ones. I had success and lucked out as my GP prescribed mirtazapine which is also used in the treatment of POTS, I think it's recomended by Dr. Jay Goldstein. My heart pounding has been noticably better since as has standing and my paresis, side effect is wieght gain from increased appitaite. I think this is because it increases Serotonin so hopefully this will help motility, down side is it will probably end up strenthining sympathetic tone as it blocks Alpha-2 sites which stops norepinephrine from activating but also causes more to be produced, it also blocks muscarnic which is bad as it will probably worsen my dry mouth. Hopefully combining with a beta blocker like Labetolol will block all the norepinephrine sites as I suspect I have a problem with too much of this. I also started some heart supps so could be them but I doubt it.

    I have noticed consistently that at around 5-6pm I feel like I can't breathe and heart is worse. I remember Jack saying magnesium is low in AM and PM as red light is used to power mito in this time. I have started using my vielight in this time to simulate this. I also think I need to get magnesium higher somehow.

    Was sat in garden all day today reading Robert O Becker's The Body Electric, got to the bit where he talks about using silver and positive current to treat bacteria and I remembered that I think in this journal he recomended I try collidal silver for elevated intestinal enzymes. Well maybe I should start it up again as it could help beat POTS/CFS if it kills the stuff that's leaked into cells/mito. I remeber when I used it before it did reduce my palps a bit, problem is it's hard to get distiled water, have to order it.
     
    Jude and caroline like this.
  18. seanb4

    seanb4 New Member

    UPDATE:
    Not as bad as 6 months ago but still pretty bad. My theory on my illness has changed slightly.

    I have POTS, CFS, Gastroparesis. Some of the main viruses that cause these conditions also infect B Cells (which, as fair as I understand isn't common for viruses). The infected B Cells then cause autoimmunity which I suspect is targeted at my adrenergic and muscranic receptors causing my symptoms.

    To treat this I will need to help my immune system with lots of light (~350nm + 480nm) and some antivirals (valtrex/Rituximab). I will also need to support my ANS with pots drugs and possibly ouabain.

    Problems I need to solve are, getting the appropriate light (it's winter, I live in the UK, housebound, can't work) and getting the correct drugs (very difficult without doctors prescription and they are all keen to write me off as anxious).

    I will hope the quantlet helps but cannot rely on it. First I need to get my body into a somewhat decent condition so that I can handle the sun (restore sweating and PNS). I shall try by use of drugs and other things. To get access to these drugs I will need to prove to my doctors that my symptoms are physical and that I should try these treatments, no small task but I will get an antibodies test from Germany that hopefully will help. Hopefully with the right combination of pots drugs and antivirals I can get my body into a position where I can get some abroad sun.
     
    fitness@home, caroline and Jude like this.
  19. caroline

    caroline Moderator

    thanks for the update Sean ..... I worry about you....
     
    seanb4 likes this.
  20. Lahelada

    Lahelada New Member

    Hi Sean,

    good to hear from you . I am following your story. You have reasoned a lot out pretty well. However that Rituximab gives me the eebiejeebies...:eek: Fingers crossed that the antibody test from Germany sheds some light on this and gives your doctors new thoughts for other areas. Keep us updated.
     
    seanb4 likes this.

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