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What has helped me. Feeling significantly better.

Discussion in 'General ME/CFS Discussion' started by littlebird6180, Mar 16, 2016.

  1. littlebird6180

    littlebird6180 Senior Member

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    I feel like I only come here when I'm really struggling so I wanted to come here to share some positive news.

    For the first time in 20+ years, I can actually say that I'm feeling pretty good. I have sustained energy that lasts me from waking until bedtime. I'm able to stay on my feet for long periods of time. I've started light exercise. I have better mental clarity (but still struggle with memory loss and brain fog. it's just significantly improved). No muscle aches, migraines. Still have nocturia and incontinence issues.

    Anyway, here is what has helped me:
    Pindolol - I feel like doctors overlooked my heart issues my whole life or didn't treat them as seriously as they were. Dr Vera put me on this beta blocker and I was reluctant to take it because i had bad associations with them. But it changed everything. I could stand without feeling dizzy or exhausted. My energy felt stable. I didn't get the afternoon crashes. I'm able to lightly exercise without feeling my heart rate skyrocket.
    Glutathione nasal spray - I've had a wonderful response to this. This has had the greatest impact on brain fog, mental clarity and energy.
    Niacin, 500mg - this gives me wonderful, lasting energy. I feel so great on it. I worry it's not sustainable but for now, I take it once a day religiously. I've had nothing but positive reactions to it. I can't say enough great things about niacin. I love the way I feel on it.
    Rhodiola Rosea, 500mg - this was my previous standby for giving me energy and helping me feel more able to get through the day. It lost some of it's effect but combined with the niacin and ubiquinol, seems to really help.
    Ubiquinol - 100mg per day - when I don't take this, I notice I get more body aches and feel more tired.
    LDN - I still take this every night but can't say I've noticed any effect. I'm hoping more it's helping me long term and in ways that I may not feel.

    Today I talk to Dr Ty Vincent and I'm excited about that and scared too. While the above cocktail has dramatically changed my life, it also doesn't seem sustainable and if I can actually find a way to get to the root of all these things rather than go through life taking so many pills just to feel good, then I'll try anything.

    I'm also wearing a heart monitor for 30 days because my cardiologist said that many of Dr Klimas' patients who come to him have a bad circuit in their heart and he is able to ablate the circuit surgically and that for nearly everyone, this completely cures them and they get their life back. I have POTS, mitral valve prolapse and a suspected bad circuit. So we will see...
     
  2. Mary

    Mary Senior Member

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    Southern California
    @littlebird6180 - I'm very glad you are doing so well! I'm considering consulting with Dr. Vincent as well, so would appreciate if your would post how it goes with him.

    Interesting about the "bad circuit" in the heart - I've never heard of that before. I don't think I have heart issues but would be very interested to hear how that goes as well - I hope you keep improving --
     
  3. JES

    JES Senior Member

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    Interesting, I had never heard about this particular beta blocker before. What makes it even more interesting is the study i found here, which suggests it might be of help for fibromyalgia. Pindolol is also a 5-HT1A antagonist, although it didn't improve depression/anxiety in the same fibro study.
     
  4. halcyon

    halcyon Senior Member

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    I'd be really careful about considering this. From what I understand, ablation is usually a terrible idea with true POTS patients. It's discussed a bit on this page which includes some references.

     
    Rlman, Wayne, aaron_c and 1 other person like this.
  5. Dan_USAAZ

    Dan_USAAZ

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    I could not agree more. I had an oblation procedure for a misfiring nerve. It was causing a brief supraventricular tachycardia. My heart rate would jump from 60bpm to >195bpm for about 4 seconds. During this 4 seconds I feel a flutter in my chest and it feels like my chest was mildly collapsing in. I believe these heart beats are very light. Not a full contraction of the heart muscle. It really does not bother me and no pain. After the procedure, I still have the misfiring nerve and resulting tachycardia. They obviously did not get the correct nerve or there was more than one.

    In hindsight, I do not believe I should have had this procedure. I do not think there was justification, based on the small impact, short duration and infrequent nature. I believe the cardiologist was looking for income and his office really pressured me to do the procedure. There is more to this story, but I will leave it at that.

    On the flip side, I know two people that have had one or more oblation procedures and they absolutely had to have them performed. It was lifesaving. One case was a relative. She went into tachycardia, but never came out of it. She had to be airlifted to a cardiology center in a larger city where they got her stabilized, then performed the procedure. She had had the short duration misfire like mine, all her life. After the oblation, the misfire is gone.

    I suppose my advice would be to get a second/third opinion and understand the impact and risk of not having the procedure versus having the procedure.

    In my case, I do not believe it was medically necessary or beneficial. If it progresses, I will reconsider at that time.
     
  6. helen1

    helen1 Senior Member

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    @littlebird6180
    Thank you so much for taking the time to tell us about your good news. It's so encouraging!

    What brand of glutathione nasal spray do you take?
     
  7. littlebird6180

    littlebird6180 Senior Member

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    I just want to thank everyone for their input. It's so valuable. I immediately researched the ablation and came across the same conflicting information. So I am not rushing into anything. My heart rate goes up to 170 often and resting is around 120. I have a lot of flutters, and extra pounding beats. I've had 3 different tilt table work ups and was diagnosed with true POTS and mitral valve prolapse.

    I'll definitely get many opinions because I don't take any surgical procedure, especially one with my heart lightly.

    A couple of other points: pindolol. I've tried beta blockers in the past and they made me more dizzy, more tired and I hated them. Pindolol has been the polar opposite. My heart is totally stable and I just feel like I can be on my feet all day and without this constant anxiety of needing to find a place to sit. Whenever my husband gets home from work, I would typically say "hi. i need to lie down" and he'd watch the kids while I went and lay down. He pointed out to me that I haven't said that in weeks now. That I've been active, helping with dinner, playing with the kids, upright without complaint. That is huge for me.

    As for the glutathione, it's a compound prescription made by Skip's pharmacy.

    I spoke with Dr Vincent yesterday and I liked him. He was a little different than I expected but overall, I think he knows what he is talking about. I'm going to start LDI in very low doses and see what happens.

    Happy to answer any other questions and happy to receive as much info as you have to share.

    Thanks again.
     
    Wayne likes this.
  8. Wayne

    Wayne Senior Member

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    Hi Littlebird,

    Thanks so much for your testimonial, and congratulations on your significant improvements. :thumbsup: I've wondered at various times whether a significant amount of my health issues might be stemming from a heart condition. My mother and at least one sister (maybe two) have been diagnosed with mitral valve prolapse in the past.

    I've thought about going to see a cardiologist to see what I might find out, but have never really followed up on this. Would it be correct to surmise that most cardiologists would not properly diagnose it, or understand what might be going on? Would a person really need to seek out a cardoliogy specialist? Thanks for any insights you might be able to share.
     

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