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How can I manage my symptoms/cure my brain fog!?

Discussion in 'Cognition' started by Lauren2196, Apr 16, 2016.

  1. Lauren2196

    Lauren2196

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    So basically I haven't been diagnosed properly, merely told yes you must have CFS and brushed off by gp's. I live in Australia and cannot find someone who specialises.
    I fainted one day at the park, the next day I went away and after I came back it was my hens night- when getting things ready that day I remember feeling wierd, dazed and couldn't think clearly. I blamed it on being overwhelmed. It started coming and going for the next few weeks. The doctor told me it was nothing. Since then I have gotten worse and worse constantly. I now can't think clearly ever. It is the strangest feeling. I go to the shops and I just don't feel all there, just spaced Out, like in a dream or on drugs and just have no mental clarity. I can't really explain it.. Is this brain fog? This is my most debilitating symptom.
    I've had an MRI, blood tests and tried anti depressants (at my doctors request as they said it was depression, I know it's not) the only thing that's come back is I've previously had 2 viruses including EBV. I also am extremely fatigued constantly, can't have a big day or I spend the week in bed.( for example I went out to dinner last night, hardly knew what was going on, as soon as I got home at 8.30 I fell straight to sleep, and haven't been well at all today) Sore muscles and joint and sore throat, migraines and also I get tingly/itchy glands/lymph nodes under my arms. The doctors told me there's nothing I can do about CFS. but I feel I can't live like this, is there anything I can do to make the "brain fog" and fatigue more manageable?
     
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  2. taniaaust1

    taniaaust1 Senior Member

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    " I just don't feel all there, just spaced Out, like in a dream or on drugs and just have no mental clarity. I can't really explain it.. Is this brain fog?"

    yes that is brain fog, it will also have a person doing things like getting confusing things etc.

    There are at least a handful of aussies at this website. You need to go and see a ME/CFS specialist as our regular doctors here often do do what you are experiencing and go "there is nothing we can do" . I got that response from doctors for over 10 years and ended up completely bedbound. (we dont even have the" joy" of being offered CBT and GET such as happens in England. Im being sarcastic, i guess we can deem ourselves lucky in that way).

    I had to see OVER 35 doctors/non CFS specialists before I even found one willing to treat my ME/CFS symptoms and that didnt even happen till i started seeing ME/CFS specialsits (even for symptoms like severe sleep issues to the point i was halluncinating and severe pain I was lucking out with getting a dr to help). I found that no doctor wanted anything to do with me due to having ME/CFS (other then just talk to me).

    What state are you in Lauren so that one of us can direct you to a specialist?

    There are things which could help your brain fog. I found I had a deficiency and treating that ended up making it so I can do maths in my head again which I hadnt been able to do for years.

    I still do though have severe memory issues and brain fog at times though, but I also know that that could be treated more in my case if the POTS which I get due to the ME/CFS was treated more. You too could have a coexisting with ME/CFS conditon making your brain fog worst the fact you fainted in the park points to this. (that you also have some kind of dysautonomia condition with your ME/CFS, its the normal to have that too with ME/CFS, You need a tilt table test to diagnose which coexisting condition it is.. NMH or POTS).

    It is possible also to test for POTS yourself but I wont go into that now. If you have POTS there are triggers you should consider avoiding to help prevent future faints.
     
    Last edited: Apr 16, 2016
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  3. Lauren2196

    Lauren2196

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    Thanks, it's hard when I'm out somewhere I have to stop and remind myself where I am and what I'm doing. I make mistakes constantly too :(
    that would be good, I have looked into specialists but haven't found any, I'm in the Gold Coast , Queensland
     
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  4. CCC

    CCC Senior Member

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    I'm so sorry you're going through this.

    We gave up on most doctors and now follow suggestions from this forum, with the recent support of a lovely local GP for blood tests and a check that we're not being too way out.

    Are you able to make a trip to Brisbane?
    At a practical level, do you have someone who can go with you to every appointment? One thing about the Australian health system is that you should never confront it alone for complex issues. You need someone to take notes, ask hard questions, and remember to always ask for a copy of all your test results.

    In fact, if you don't already have a copy of all your test results (especially bloods, urine etc), ask for a paper copy next time you go. We ended up on this forum because a result dismissed as inconsequential by three doctors was worth further investigation - and Dr Google sent us here.
     
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  5. TiredSam

    TiredSam The wise nematode hibernates

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  6. Valentijn

    Valentijn Senior Member

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    @Lauren2196 - Your symptoms sound very much like orthostatic intolerance (OI). That can cause fainting and exhaustion when standing or even sitting up too long, as well as difficulty thinking at all due to insufficient oxygen being transported to the brain. OI can show up as low blood pressure or pulse pressure (systolic minus diastolic), and/or elevated heart rate.

    As @taniaaust1 said above, it can be officially tested for and diagnosed using a Tilt Table Test. It's important to mention that you have fainted, and you feel faint along with the other ongoing symptoms. The Tilt Table Test also might help determine a cause for your OI, which could make it easier to find a treatment. There are many different treatments available which can help a lot.

    If you have ME/CFS as well, then exercise is the one treatment to avoid for OI. Exertion makes ME/CFS patients much sicker, and will actually exacerbate our OI and other symptoms.
     
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  7. CCC

    CCC Senior Member

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    Who would you suggest @Lauren2196 should see? Is it a specialist thing?

    Our CFS doctor did a poor man's tilt test, but it isn't an issue for us so that's where it ended.

    No GP I've been to has even asked the relevant questions.
     
  8. Mel9

    Mel9 Senior Member

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    Have you been checked for Lyme disease?
    Ask your GP to get blood sent to the Ricketsia Reference Laborator in Geelong , Victoria
     
  9. Valentijn

    Valentijn Senior Member

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    Whoever does Tilt Table Testing in the area :p It would be at a hospital, probably in a cardiology unit. Though a dysautonomia specialist would probably be better.
     
  10. CCC

    CCC Senior Member

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    Last edited: Apr 17, 2016
  11. Art Vandelay

    Art Vandelay Senior Member

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    A friend was impressed by Dr Deed in Brisbane. There's a private facebook group for doctor recommendations also: https://www.facebook.com/groups/287952358017187/
     
  12. Lauren2196

    Lauren2196

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    Thanks for the replies, I will look into those things and read the articles.
    I have looked into Lyme disease but haven't been tested, I'm not sure it is though because I have a feeling because my bloods came back positive for EBV and another virus, that it's started from that. I'll try look into good doctors ,the ones I see now aren't the best!
     
  13. Lauren2196

    Lauren2196

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    I also had a referral when. I first visited the gp for an echocardiogram, I never went because I wasn't sure what it was for. Would it be something to do with that? Or would I just get the tilt table test for that?
     
  14. taniaaust1

    taniaaust1 Senior Member

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    I personally think you should go along with any heart tests recommended to you by doctors seeing you fainted. You really need to get to the bottom of why you fainted.

    There is at least one member here who is in Queensland who may be able to tell you the possibly good specialists here. alex (he then has some numbers after his name) is in Queensland . I too have heard several people say good things about Dr Deed. It can be worth travelling to a specialist with this problem, some of them once you see them once will do phone appointments.

    "Ask your GP to get blood sent to the Ricketsia Reference Laborator in Geelong , Victoria "

    I'm in Adelaide and my doctor got my blood sent there to be tested when i asked

    a previous cfs specialist of mine had his patients tested for ricketsia with just the standand test for this most blood places do and he found out of 600 of his cfs patients in adelaide, around half of them came up positive to ricketsia (not me thou.. not back then and not more recently when tested throu the specialised rickettsia lab).
     
  15. Mel9

    Mel9 Senior Member

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    They do Borrelia and other co-infections now
     
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