1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

What has helped with your brain fog?

Discussion in 'General Treatment' started by livingwithcfids, Oct 29, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,420
    Likes:
    4,818
    australia (brisbane)
    Hi bob, Have u had reverse t3 checked? I have been reading into this and it seems that t4 can convert to reverse t3 which blocks the effects of t3. Some treatments look at T3 thyroid and some a natural combo of t3/4 supplements, also optimal cortisol levels are also required for proper thyroid function. My thyroid tests have always been good but i havent had reverse t3 measured but my body temp is always low, i wonder if many of us may have low thyroid function that is being missed by alot of normal testing.
     
  2. Bob

    Bob

    Messages:
    8,913
    Likes:
    12,619
    South of England
    Thanks heapsreal... I have thought about whether it would be helpful to try out a natural thyroid treatment, or an alternative treatment to thyroxine.
    But getting anything unusual on the NHS is like banging your head against the wall, and not usually worth the grief!

    The thyroxine treatment definitely raised my thyroid levels, but I can't know if it was an optimal treatment.
    My thyroid normalised itself after about a year anyway.

    Since then, I think it went slightly (sub-clinically) high which felt very pleasant...
    I felt unusally happy for a while, as if my neurotransmitters were high.
    But I still had the usually ME symptoms when I felt like that.
    I thought I might be developing mild bi-polar at one point, but I'm certain that it's just a fluctuating endocrine system.

    I think my histamine levels are abnormallly high now as well, because i've developed all sorts of allergies all of a sudden!

    Now I've had a virus for 6 weeks, with asthma bronchitis, and I feel run down, so I really don't know where i am at the moment!

    Oh it's all so much fun isn't it!!! :In bed:
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,420
    Likes:
    4,818
    australia (brisbane)
    Im not sure if its classed as a medication or supplement but there are natural thyroid products that contain both t3 and 4, and some with just t3 http://www.biogenesis-antiaging.com/product_info.php?products_id=53 , Im looking into HPA axis dysfunction which seems to be a big problem in me/cfs, there seems to be an overlapping dysfunction between adrenal, thyroid, neurotransmitters etc and they all seem to play off each other. The HPA axis seems to control most bodily functions like sleep, blood pressure, heart rate, hormones, neurotransmitters, so many things. thyroid seems to be the gas pedal for most of these functions, so sometimes speeding something up like poor adrenal function can initially make u feel better but then crash as its too much strain on the adrenals.

    cheers!!!
     
  4. Nielk

    Nielk

    Messages:
    5,477
    Likes:
    6,099
    Queens, NY
    From Bob
    Hi Bob,
    I also take Klonopin. I've been taking it for 4-5 years. It was originally prescribed for me for my insomnia and CNS excitability. After a while, it as not enough for me to fall asleep so they added Ambien which works for me witth sleep. I take 3mg of Klonopin every night. This dose seems to be what my body needs/craves? On numerous times, I have tried to reduce it very slowly and I always have to come back to this dose. I don't know what benefit my body gets from it. It doesn't help me with sleep so I'm assuming that I am just addicted to it at this point.

    I was wondering how you know that the clonazepam helps you? Do you not take it every day and on the day you take it, you feel better?

    It becomes very tricky (for me) when I'm on multiple medications for a while to be sure that it's still effective. With Ambien, I know for sure that if I don't take it, I will not sleep at all. (have tried it)
     
  5. madietodd

    madietodd Senior Member

    Messages:
    2,483
    Likes:
    1,743
    East Coast, USA
    After a few weeks completely, absolutely off gluten, my brain fog went away. I have other problems, like no memory, but the feeling of thinking through cotton balls is gone.
     
  6. Bob

    Bob

    Messages:
    8,913
    Likes:
    12,619
    South of England
    That's a good question Nielk...

    I don't take Clonazepam regularly, and when I do take it, I only take a quarter of the lowest dose tablet per day.
    So that's a quarter of 0.5mg = 0.125mg. Very occasionally I take a half tablet if I think I need the extra protection.

    The reason I started taking these small doses was because, years ago, I read somewhere that a tiny dose of clonazepam can help ME symptoms, without becoming addictive.
    And in my experience, it does not become addictive at this small dose. I would not take a higher dose because it becomes addictive (i.e. your body gets used to it, and there is a withdrawal effect) after just a few days. I've experienced this myself after only about three days when i've tried a higher dose.
    And when my body gets used to it, I don't think that it would be beneficial for me.

    But how do i know it is beneficial? I can only go from my own personal experiences with it...
    It's the only medication or supplement that I take regularly so I'm able to test it out without interference from other meds.
    When my brain is feeling over-stretched or frazzled, because I've over-used it (not difficult), the clonazepam calms my brain down really quickly.
    My brain can feel over-stretched and agitated for days after over-using it, but then when I take clonazepam, it can calm it down very quickly, and my brain will feel much calmer after a rest or sleep.

    In the past, I also think clonazepam helped to prevent relapses when used in combination with resting, although i can't be sure of that now, as it was a while ago that I was that unstable. I'm a lot more stable now, so I don't have serious relapses at the moment. Touch wood.
    I think the clonazepam makes my system less reactive, and more stable and calm, and maybe that's why it helped to protect me from relapses.
    But just to be clear - It didn't stop relapses or make my ME better - it was just a small helpful bit of protection, when there was nothing else that helped. And it helped to reduce some symptoms.
    But as I said earlier, I only used it occasionally.

    Now that I'm thinking about it more... I'm not sure if clonazepam ever helped reduce my brain fog... It helps with calming down the brain when it's been over-used and when it's feeling over-stretched, tired and agitated. Maybe this also helps to avoid getting more brain fog, but it doesn't actually get rid of it.
     
  7. Nielk

    Nielk

    Messages:
    5,477
    Likes:
    6,099
    Queens, NY
    It makes sense, Bob, that it calms down your brain. I think it produces GABA which is a CNS depressant. You are smart to use it at this small dose. You won't get to the point of addiction and you are benefiting from it. That's great. I wish I would have known when I started, that it's going to be so hard to reduce it although at the time, I was in such a bad shape, insomnia wise that I would have taken it regardless. Now, besides the Klonopin, I think my body got also addicted to the Ambien. I hate to have to take these benzo drugs. I wish I can find a way to get off them.
     
  8. Bob

    Bob

    Messages:
    8,913
    Likes:
    12,619
    South of England
    Sorry to hear that you are stuck on them Nielk. I was lucky to read about it before I started taking them.

    The only suggestion I have, for coming off them, is to lower the dose by a tiny amount (like a quarter tablet, or even less if possible) every two weeks.
    Doing it this way might allow your body to get used to the lower dose over the two week period, before you lower the dose again.
    I did something like that to come off SSRI anti-depressants, ages ago. And it worked for me - I didn't get a mood rebound.
     
  9. Nielk

    Nielk

    Messages:
    5,477
    Likes:
    6,099
    Queens, NY
    Thanks for the suggestion, Bob. I too was able to come off anti depressants in a very slow manner years ago. With the Klonopin, I seem to be stuck at this level. I've tried reducing by 1/4 mg and after three days I start having withdrawal symptoms. Right now, I don't want to attempt anything because I'm not doing well alltogether. My doctor said that sometimes, one needs to come off benzos like Klonopin in a hospital setting.
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,420
    Likes:
    4,818
    australia (brisbane)
    Google the equivilant dosage of valium to klonopin and talk to your doc about changing over as it as a longer 1/2 life and easier to come off supposedly. Also low doses of bioidentical progesterone cream for men can help improve gaba sensitivity and has cns type calming effects and helps improve deep sleep. I would consider getting all adrenal and sex hormones tested male and female hormones as we all have abit of each, men are prone to high estrogen which can also cause symptoms as well. Low progesterone can occur from adrenal fatigue. but google progesterone in men and have a read.

    This is a long article but you will find bits of gold in it http://www.redorbit.com/news/health/98867/progesterone_the_forgotten_hormone_in_men/index.html
     
  11. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    425
    Northern Ca. USA
    My GP says this is common with her me/cfs and Lyme patients. My RT3 was quite high, but was brought back into normal range with one month of T3. It had a significant impact on my recovery. Adequate utilization of T3 impacts many things.

    How I react/respond to things change over time with this disease, these days, anti-inflammatories have the greatest affect on my brain fog.
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,420
    Likes:
    4,818
    australia (brisbane)
    Cool tristen, as u can tell i have been looking into this as my thyroid tests are normmal but body temp is low. It seems reverse t3 can get high from any sort of stress like we are under also from too much or not enough cortisol.
    Can you elbaorate on how u dosed your t3 etc, maybe start another thread.

    cheers!!!
     
  13. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    425
    Northern Ca. USA
    Yea sure, she just ordered 5mcg T3 daily. She ordered the compounded SR form which has a prolonged and smoother effect. No problems with it at all. Actually wouldn't mind staying on it, but my labs at 1 month showed normal. So we stopped it there.
     
  14. u&iraok

    u&iraok Senior Member

    Messages:
    158
    Likes:
    31
    U.S.
    My doc said thyroid hormone can test normal and actually be at normal levels but can be of poor quality which would have the same negative effects.
     
  15. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    425
    Northern Ca. USA
    Hey heapsreal....sorry I made a mistake. Saw my GP yesterday and she said I was on the T3 for 3 months. The RT3 did come back into normal range at that point.

    Even though I'm doing much better these days, memory is a problem.
     
  16. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,420
    Likes:
    4,818
    australia (brisbane)
    I think we have lots of dysfunctions going on and Rt3 is one. i think we just have to keep looking for them and treating them as we go. Good to see it has helped, i will be talking to my doc about it soon. I have heard by some that it is just a sign that our body is under some sort of stress and its one way the body tries to slow down its metabolism. They said that once the cause is found that Rt3 will sort itself out, but i think some could have it stuck on. Its a part of the jigsaw puzzle for some of us maybe.

    cheers!!!
     
  17. Tristen

    Tristen Senior Member

    Messages:
    613
    Likes:
    425
    Northern Ca. USA
    I like the Cheney philosophy that our system has slowed itself down for self preservation. The RT3 problem is either that, or downstream sludge resulting from other core pathology. But I have found that even though these imbalances are not the source of the pathology, correcting them is still helpful. I doubt it would be helpful to treat just the thyroid alone without also treating the other systemic problems because it would just rebound back to it's pre-treatment dysfunction. But I have pursued one system problem right after another, and so far, it has paid off. Until we do get to the source, this has been working for me.
     
  18. rydra_wong

    rydra_wong Guest

    Messages:
    514
    Likes:
    31
    I also noticed this some years back. Going off gluten also took care of neurological issues like depression. I tested for celiac disease as a result but although I have one of those Ig or whatever allergy markers for it, I am not celiac.

    Interestingly, www.lef.org ran an article in the last year or so to the effect that their doctors have discovered that their patients could eliminate high blood pressure simply by eliminating wheat from their diets! (My belief is that it is because wheat makes up about 40% of the American diet -- unless you have looked into it, you have no idea how many places gluten is hiding! - and the wheat consumed is generally overprocessed and either devoid of the B vitamins necessary to break it down in the Kreb cycle or has had a handful of vitamins added back but not in the original types, doses, or number. (Gluten is used as a stabilier and thickener and an anti0caking agent all over the place and in these usages for sure you can bet t is devoid of vitamins. So the gluten acts as a B Vitamin Depleter. There are several studies by the american heart association showing that methyfolate reverses hypertension and if the average person (w/o a genetic defect) just stops eating the B Vitamin Depleter, that may be all they need.

    In my own case I could not sustain a diet w/o wheat as I did not then get enough starch and this caused severe low blood sugar issues for me. So I tried to beat it. I decided that I had leaky gut (pores in intestines too large and allowing entry to undigested wheat, which is especially nasty to the brain). I heard on the radio that the reason zinc works to stop a cold is that "it makes the pores in the skin of the nose smaller so that the rhino virus canot enter". So I decided the intestines were also skin, tried (high dose) zinc, and it worked for me. I have eaten wheat ever since w/o fear it will throw me into a deep depression/fog. I believe the reason that zinc is known to help macular degeneration may be also the same reason -- making the pores of the capilaries in the eye smaller so they don't leak.

    In case anyone does find this interesting -- I want to caution you that taking high dose zinc (~50mg/day) w/o copper led to a copper deficiency for me. So I'm not advocating anything, just adding some grist to the mill.
     
  19. Lotus97

    Lotus97 Senior Member

    Messages:
    2,015
    Likes:
    423
    United States
    When I switched from Prozac to Paxil recently I realized Prozac had been helping my ADD/brain fog. I think this might be because Prozac also increases norepinephrine and dopamine unlike most other SSRIs.
     

See more popular forum discussions.

Share This Page