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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. T

    Frontal head pressure with cognitive and personality changes

    Are you based in the UK? Interesting you seeing that doc. Who are they? I'm in the UK. It's difficult for UK docs to do anything off piste which isn't always a bad thing unless you need something experimental as nothing standard works!
  2. T

    Frontal head pressure with cognitive and personality changes

  3. T

    Frontal head pressure with cognitive and personality changes

    Hi Sean yeah it's a bummer alright. I have had periods of relief but never a full escape from it! But I continue to look for answers and when I get them I'll pass them on! Yes it's not uncommon for it to be post viral and it seems reasonable to assume that this kicks off an autoimmune response...
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    Combination antidepressant treatments

    Yip it's true I don't think we know enough about long term effects of antidepressants however I think they can be helpful even life saving for some. I think why I've benefited is that the the pathophysiological process of my condition mimics that of anxiety / depression. Whether this is due to a...
  5. T

    Combination antidepressant treatments

    Hi, just wondering if any have had a good response from an antidepressant for cognitive / mood / energy levels and then lost that benefit then tried a myriad of monotherapy antidepressants and then ended up on a useful combination of antidepressants? Is so which combo are you on? Thanks! Tom
  6. T

    Frontal head pressure with cognitive and personality changes

    Good no cognitive issues. I can't think of anything worse. Literally can't think. 🙄🤪
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    Frontal head pressure with cognitive and personality changes

  8. T

    Frontal head pressure with cognitive and personality changes

    Yip it's odd that one can 'feel' what feels like brain inflammation and that the symptoms of depression / anxiety go with it. I haven't heard of people with depression / anxiety that's not related to CFS complaining of pressure like sensation...
  9. T

    Frontal head pressure with cognitive and personality changes

    Hi just wondering if anyone else has these issues too? And if anything in particular has helped? My condition diagnosed as CFS started suddenly with palpitations and anxiety and generally feeling awful 20yrs ago now. It was like a switch was flipped and have been broken since! I think POTS was...
  10. T

    Antidepressants

    Hadn't heard of an over the counter lithium, presume doesn't have the potential toxicity risk its prescription cousin has. I'm not great at giving supplements a good enough go, if I don't notice any improvement soon I bin it though I'll patiently wait the 4 weeks for an AD to take effect when...
  11. T

    wellbutrin and/or tricyclics for brain fog

    I'm in the UK and tried Reboxetine which gave me a few days break from brain fog but otherwise just serious insomnia and jitteryness. I had read the articles about it not being an effective AD but as I dont think I have typical depression thought it worth a shot especially as I'm running thin on...
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    wellbutrin and/or tricyclics for brain fog

    Hi Ema, such a long time since my thyroid was tested so not sure though I don't seem to fit a clinical picture of hypo or hyperthyroidism. I understand you're a steroids guru. My doc has suggested I try two steroid regimes. One of low dose 2mg Pred a day for a month. And then if no response 25mg...
  13. T

    Antidepressants

    @Mattman - I too have felt slightly better with a cold. It is interesting. And yes cortisol is increased in infection. If it was to do with cortisol though I'd imagine you'd expect a similar positive response with steroids. I didnt when I was on them. Did others? Perhaps the dose matters? Or...
  14. T

    wellbutrin and/or tricyclics for brain fog

    too right Shell we have frustration coming at as from all angles, the condition, docs, everyone else's misunderstanding! And yes drug wise all I got to chase are ADs to hopefully be the life buoy until something that treats the underlying cause rescues me for good! If I find a useful answer en...
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    wellbutrin and/or tricyclics for brain fog

    Hi Debrouth, thanks for suggestions. I did approach my GP who asked a psych as although not licensed for depression docs do prescribe drugs off licence here. However the psych doesnt use it and so they wont offer it. Instead they offered me amitriptylene as I havent tried tricyclics. However...
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    wellbutrin and/or tricyclics for brain fog

    yip, thyroid is and has always been normal - wish it wasnt and it was the problem, be a lot simpler!
  17. T

    wellbutrin and/or tricyclics for brain fog

    Hi Shell sorry for late response. Yes tricyclics seem more useful for pain and sleep than the fog. Glad you're getting some benefit from them. Nortriptyline I understand is less sedating so may try it out. I'm always reluctant to take meds but then like you say when on nothing realise that...
  18. T

    wellbutrin and/or tricyclics for brain fog

    Hi GG, haven't tried LDN, imagine it will be a battle to twist my GPs arm into trying me on it but whats another battle! How has it helped you? Yes Tricyclics aren't as 'clean' as SSRIs so not surprised you experienced all those s/e. But with my response to ADs I will prob have to give em a...
  19. T

    wellbutrin and/or tricyclics for brain fog

    new to the forum, hi all. I'm tom and CFS came into my life aged 20 and has long overstayed its not being welcome in the first place! 15 years now, many of them hellish. My most troublesome symptom is fatigue mostly cognitive which not only has my brain work at 1/3 pace but has taken hostage my...
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    Rituximab in Europe?

    Thanks for reply. Yes and I doubt the Norwegians or any European docs will offer it privately until at least phase III shows benefit. The UK i doubt will ever put on a ritux trial, too gung ho for our CBT indoctrinated docs! I can't afford heading over to the US but may have to make it happen as...
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    Rituximab in Europe?

    Hi, I am London, England based and wondered if anyone knows of any doctors in Europe administering Rituximab for CFS? Also does anyone know whether the doc in California treating with Ritux is having the same success as the Norwegians? I'm seriously considering giving it a go. Thanks, Tom