The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Seems sometimes it could be a head problem...

Discussion in 'General ME/CFS Discussion' started by Tofer, Feb 13, 2017.

  1. Tofer

    Tofer

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    My wife has been doing badly since her 16. It started with panic attacks, agoraphobia, fatigue, brain fog and headaches. Then there was a period she felt a bit better.

    6 years ago I've met her and we started to try to live a normal life. Of course it was not that easy. She felt badly often. But we thought it was all in her head and tried to create a comfortable atmosphere for her to make her life less stressful. Sometimes it worked. Last two years it bacame worse. And in summer we found this CFS forum. It explained a lot to us. But she started to feel even worse.

    She made all analysis that were available in our country. We found 10 in 4th degree hhv6 and 10 in 6 hhv7. Here that was. Immunologist prescribed her IgG. And it went very bad. She couldn't speak even after the therapy. And the ambulance couldn't even do anything. They didn't even know about hhv. And she understood that nobody can help her and it was so stressful to her that she as in that bible stories stood up and went. She had so many energy she couldn't stop. BUT! The greatest depression arrived.

    She started to try to do something in order not to think about terrible things in her head. She started to go out of home, what was almost impossible to her before. But the more she did it the deeper depression infected her. And now she is physically ok, but physically not really. She barely could find a reason in all that happens around her. She asked me to brought her to s hospital to choose a right medicine against depression.

    I'm confused and so much worry about her.
     
    Last edited: Feb 13, 2017
  2. ahmo

    ahmo Senior Member

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    I have no idea what's wrong with your wife. But I know many things I thought were all in my head, turned out to be my biochemistry. Gluten, histamines, and sulfur were all poisoning me, and B12 deficiency played a huge role. There are links in my signature about methylation. But it's a very involved process.

    To the extent that the mind is involved, EFT, or 'tapping', can be very effective. I'm so sorry you're both struggling with this. good luck to you.

    http://www.thetappingsolution.com/what-is-eft-tapping/
     
  3. Valentijn

    Valentijn Senior Member

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    Has she ever been assessed for Orthostatic Intolerance? Low blood pressure, low pulse pressure, and/or tachycardia could potentially cause some of those symptoms. It sometimes gets mislabeled as agoraphobia because people feel worse when standing up for a long time, which is more likely to happen when out shopping and such.

    If you have a blood pressure monitor, she can do some testing at home, when sitting and then every 5 minutes or so while standing still propped up against a wall for support, trying not to tense muscles.
     
    PatJ and Hutan like this.
  4. Tofer

    Tofer

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    The thing is that she had all that symptoms, but after she had "stood up" all the symptoms disappeared:/ but a strong depression arrived. Just don't know where the cause is hidden (

    Now she is in a hodpital taking Fenazepam and other medicine trying to find a proper AD. She is very sleepy and seems getting out of her depression. Don't know what may happen after she stop fenazepam.
     
  5. China Patient

    China Patient

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    hi ,Tofer
    Has your wife been diagnosed as cfs?I think this disease can spread through saliva and sex.
    I have a question to ask you:
    Do you have the same symptoms as your wife?
     
  6. Tofer

    Tofer

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    No, I don't.

    Actually I start thinking it's much more complicated than just one cause. And depression together with panic are the main causes of her problems. But what does really cause them?

    We've tried already 4 types of AD and they don't work. The doctor which used to be so confident at the beginning starts to be very nervous about each new side-effects to new medicines and behave like we are guilty. Again I have no clue what to do. (
     
  7. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Hi @Tofer,

    Very sorry to hear about your situation.

    Has your wife been tested for Wilson's Disease? It's a copper storage disorder that can have a psychiatric presentation that doctors might not be aware of.
     
    Last edited: Mar 18, 2017
  8. Basilico

    Basilico Florida

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    Everyone's situation is different, so what helped me might not help her. But I wanted to make a few suggestions in case you are looking for other things to try.

    I have had many bouts of depression. Luckily, they don't seem to last long, but when they happen it feels like it's the end of the world and there's no reason to live because nothing is enjoyable. It's not only terrible for the person who is experiencing it, but I know how hard it is on the person who loves that depressed person - it's horrible to see someone you love suffer, and I think it is really great that you are so supportive. Even if she doesn't - or can't - say it, I'm sure that you being there is actually making a huge difference, even if it doesn't feel like it.

    Here are some things you might want to consider trying:

    1) Inositol. Several people here use it, and there is research that proves it is as effective as antidepressants (at 16 grams per day). It's not expensive (at least in the US - I'm not sure where you are). Could be worth trying.
    https://www.ncbi.nlm.nih.gov/pubmed/7726322
    https://www.ncbi.nlm.nih.gov/pubmed/11386498

    2) Selegiline has been a real lifesaver during my 'black' periods. At low doses, it's an MAO-B inhibitor (which is what I want and like this you don't have to worry about avoiding cheese and wine). At higher doses, it's an MAO-A inhibitor, so you should keep dosages low. I order it from an online UK pharmacy (it's not scheduled, no prescription needed).

    3) Lithium Orotate - my mother in law used it and had a very noticeable improvement in her sleep quality and mood. Very cheap to order on Amazon (in the US)

    4) Has she ever tried a Beta Blocker or Xanax to temporarily help with anxiety? These medecines can be taken as needed instead of all the time - perhaps you might want to discuss the possibility of these with her doctor.

    There is so much information here on this website - many people here have been fighting with depression, and what works for some may not work for others, so don't get disappointed if the first thing you try doesn't work.
     
  9. IreneF

    IreneF Senior Member

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    I wonder if your wife has bipolar disorder.
     
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