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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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  1. SeanQHX1

    Sudden Supraventricular Tachycardia Attacks

    I'm sorry to hear that you've also been getting these scary episodes too. They are indeed terrifying, especially the first one you get. If you also get those night sweats that come on briefly before an attack comes on, then it sounds like the same symptom. The chances of catching one on an ECG...
  2. SeanQHX1

    Possible Autoimmune Encephalitis

    Hi Liv, sorry to hear you've been getting these symptoms too after an infection. I hope you manage to get to the bottom of your illness and find some way to get relief from those cognitive difficulties especially. I'd never wish this on anyone. The seizures and hallucinations are considered...
  3. SeanQHX1

    Muscular Dystrophy-like Symptoms

    Interesting read with these articles. I should mention that I also have all the symptoms of iron deficiency anemia too with this and feel like someone much older who smokes heavily, despite taking iron suppliments. I'll do some more labs and will check these while I'm at it.
  4. SeanQHX1

    Muscular Dystrophy-like Symptoms

    Thanks Treeman. I'll see my GP once again to keep them updated on the situation, even though I've no longer got any faith in any of my own doctors. Maybe if a doctor actually examined these legs though, they would realise how serious of an issue this is and do something.
  5. SeanQHX1

    Muscular Dystrophy-like Symptoms

    Hi everyone again. Since late 2019, I've been getting muscle wasting issues which continue to steadily get worse, despite taking loads of foods, suppliments, proteins and meal replacements. More recently, I've been developing swollen calves that look huge and out of proportion with my worryingly...
  6. SeanQHX1

    Strange Symptoms with COVID-19 (and all other infections)

    Hi everyone again! I just recently had COVID-19 just over a week ago and I have to say, I thought it would be much much worse, given my existing health problems too. I only had symptoms for one day, then they basically subsided and I appeared to be asymptomatic. The only symptoms I had though...
    • SeanQHX1
    • Thread
    • asymptomatic brain covid-19 donnington disease fast heartbeat svt
    • Replies: 0
    • Forum: General Symptoms
  7. SeanQHX1

    Low Vitamin D and Ferritin + Heart Issues

    Regardless of what doctors I see in the UK (aside from naturopaths and other alternative doctors of course), all your mainstream ones seem to just blindly follow orders from the NHS's system out of fear of getting their medical licences revoked I think, and just treat blood tests instead of...
  8. SeanQHX1

    Low Vitamin D and Ferritin + Heart Issues

    Thanks @YippeeKi YOW !! . More problems just seem to keep piling up with this illness the longer it goes on. What started off with some lingering brain fog after an virus/infection has now turned into this. I know I need to get to the bottom of these issues as I know myself it will only lead to...
  9. SeanQHX1

    Low Vitamin D and Ferritin + Heart Issues

    Hi everyone again! I just recently had both my vitamin D and ferritin checked recently and found that they are worryingly low. This is despite taking the right amount of iron in suppliments and around 4000iu of vitamin D in total with suppliments. My ferritin and iron levels have actually been...
    • SeanQHX1
    • Thread
    • arrhythmia donnington disease ferritin heart low iron vitamin deficiency weakness
    • Replies: 6
    • Forum: General Treatment
  10. SeanQHX1

    Suspected Heart Murmur and Further Cognitve Tests

    Hi everyone again, I just thought I'd report back with another update on my health situation. My GP gave my heartbeat a listen during an appointment and reckons that I have some kind of heart murmur, so I've now been refered to a cardiologist. My heart has been doing all kinds of crazy abnormal...
  11. SeanQHX1

    Another Post-Viral Diagnosis

    Yep. I don't think my neurologist is quite lying I would say and I expect he was probably just following the same NHS guidelines by offering CBT/antidepressants. He did ask all the right questions related to ME/CFS (asked about PEM, any sensitivities/intolerences, pains, muscle issues etc, non...
  12. SeanQHX1

    Another Post-Viral Diagnosis

    I don't have PEM as a symptom, mental or physical, so I think it's safe to say I don't meet the criteria for actual ME/CFS. My condition, compaired to this, just steadily gets worse with time and if there's any fluctuations at all, they are very mild. The sleep dysfunction is probably the...
  13. SeanQHX1

    Another Post-Viral Diagnosis

    Yep, I thought the idea of CBT and antidepressants seemed dubious, especially coming from an ME/CFS expert. He seemed very well informed about post-viral conditions when I spoke to him, but if he's just offering antidepressants and going with the treatment plan for depression, it says a lot...
  14. SeanQHX1

    Another Post-Viral Diagnosis

    Hi everyone again. I just seen a neurologist and PVFS/ME/CFS specialist recently in the UK and the consultation went as well as it could have I will say. The doctor was very approachable, spent a good hour with me and was very thorough with his questions and observations. As some of you may...
  15. SeanQHX1

    Opioids and Brain Fog

    I'll have a look more into LDN, I would be interested to see what effects it would have without the euphoric effects of opioids. Maybe then I'd know for sure if the codeine is actually aleviating my symptoms or just covering up/blocking out the symptoms with the euphoric effects. @DrUniverse...
  16. SeanQHX1

    Opioids and Brain Fog

    Hi everyone again. For about 3 years I've been taking codeine (in the form of co-codamol) regularly every day to get relief from the continuous bombardment of severe brain fog and what I can only describe as horrible head feelings I've had non-stop, getting progressively worse since becoming ill...
  17. SeanQHX1

    Frontal head pressure with cognitive and personality changes

    I see, sorry to hear about your bad experience, and thanks for letting us know. I have heard some mixed feedback with patients regarding the doctor I mentioned, though I did think the bad ones were related to the NHS, just offering CBT and such. Thanks.
  18. SeanQHX1

    Frontal head pressure with cognitive and personality changes

    Yeah, I'm from Glasgow. The doctor I'll be seeing is Dr Abhijit Chaudhuri. He's an NHS neurologist at London Queen's hospital but he travels to Glasgow to see private patients, at £220 for an initial appointment. UK doctors, NHS especially, generally do nothing for anything not written in the...
  19. SeanQHX1

    Frontal head pressure with cognitive and personality changes

    Yep, I'd say that the autoimmune theories would make sense, especially when the onset is sudden (like a switch being flipped like you said) and just keep getting worse with nothing moving the needle (other than the antidepressants you mentioned). I'll be seeing a doctor soon who specialises in...
  20. SeanQHX1

    Frontal head pressure with cognitive and personality changes

    I can relate very much to the head pressure and cognitive problems you speak of, sorry to hear you've been suffering from this for over 20 years with no further progress getting to the bottom of it. Even after all this time, I do hope you manage to find some answers and get relief from this. My...
  21. SeanQHX1

    Sudden Rapid Weight Loss

    Not yet unfortunately, though thankfully this weight loss I mentioned previously hasn't worsened too much since I posted this. I recently seen a neurologist tried to diagnose me with FND and said that my symptoms are "somatic", I disagree with this of course. So I'll be seeing another...
  22. SeanQHX1

    Possible Autoimmune Encephalitis

    @PisForPerseverance Yep, it does look like an extensive list of symptoms, though most of them I would say are just further expansions to other issues that began previously. Keep in mind too that it was mostly just the initial cognitive problems for nearly a year before the other symptoms...
  23. SeanQHX1

    Possible Autoimmune Encephalitis

    Regarding the physical complaints, I don't appear to have any body fatigue or pains in any muscles, joints etc, wouldn't say that I feel physically tired or exhausted during the day or get any temporary flair-ups (PEM) of physical symptoms. I do in fact have some physical complaints however...
  24. SeanQHX1

    Possible Autoimmune Encephalitis

    Hi. I haven't yet met the neuroimmunologist so I wouldn't be able to really give my thoughts yet. And since there's very few doctors going around in this field, I'm not sure what reputation they have with their patients compaired to general neurologists. But I do know that the doctor I'll be...
  25. SeanQHX1

    Possible Autoimmune Encephalitis

    Hi everyone once again. I'm currently waiting on word to see a neuroimmunologist in the hopes of finding answers after battling worsening, disabling brain and head symptoms for 5 years now which I suspect at this point to have neuroimmune causes. Just now, I continue to deteriorate with this...
  26. SeanQHX1

    4.5 Years of Steadily Worsening "Brain Fog" (Bradyphrenia)

    @Hubris Sorry to hear that you have also been suffering with these symptoms and haven't found anything that works. Yep, this definitelly isn't a symptom you would generally get with ME/CFS. Many on here have some degree of this like you said, but not like this. If symptoms are able to relapse...
  27. SeanQHX1

    4.5 Years of Steadily Worsening "Brain Fog" (Bradyphrenia)

    Hi everyone. For 4 and a half years now I've been fighting a losing battle with steadily progressing brain symptoms, which started suddenly with an infection or virus of some kind back in June 2016. Nothing I've tried in these years regarding diet, suppliments, medications have had any effect at...
  28. SeanQHX1

    Can anyone recommend somewhere I can get a vitamin / mineral deficiency blood test?

    I can't be much help here unfortunately, since I'm in the same boat as you with the NHS, but I do hope the others on here can help you out. I do feel your pain with this I must say, I've had undiagnosed symptoms for over 4 years which have left my life in ruins, and the NHS doctors have just...
  29. SeanQHX1

    Brain symptoms still getting worse - Losing hope

    Hi @chaki90, your situation does sound a lot like mine I'm sorry to hear. And it makes it even more worse being once a bright, skilled, academic person before losing it all to an unknown disease. Some of your symptoms still sound quite different from mine though, like the confusion you mention...
  30. SeanQHX1

    Brain symptoms still getting worse - Losing hope

    I have emailed and messaged patients on other forums and Facebook who have symptoms similar to mine and they have had no luck either it seems, despite more tests and investigations being done than in my case. It does seem to be something very rare I have, although probably more straightforward...