• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Search results

  1. JuliaMaple

    High dose of vitamin C, any experience?

    Hey there everyone, For various reasons I consider trying high dosis of vitamin C. Some of them being inflammation in my body, chronic swollen lymph nodes without a clear reason, adrenal problems (low aldosterone). And so much more, too much to name. I was wondering about experiences of others...
  2. JuliaMaple

    Sulforaphane in cruciferous vegetables

    Hey there everyone, I found some super interesting video's by Dr. Rhonda Patrick (American biochemist) and some of her area's of interest, including the effect of Sulforaphane in cruciferous vegetables. I am pretty sure some of you already know her, but just to be sure that it is not missed, I...
  3. JuliaMaple

    Results and dead end.

    Hey everyone, I recently got some results. A 24-hour blood pressure test was done, and a neuro-psychological series of tests where done. The 24-hour blood pressure test confirmed what was already seen during the tilt table test, it shows POTS 'and' postural intolerance/hypo-tension or whatever...
  4. JuliaMaple

    A fresh start (7)

    Hey there everyone, I wanted to write a small update. It has been a while again, and lots has happened in life. When it comes to the 'medical issues section', not much has happened. Because of the busy month that is December, everything was on hold a bit. And because one of the sons of my...
  5. JuliaMaple

    Narrowing of pulse pressure when standing, what is it called?

    @Valentijn I will google that a bit more then, thanks for your idea :) The confusing bit is that my body sometimes does behave POTS like, sometimes blood pressure and heart rate both rise when I stand up, or sit up. But I also have days where both my heart rate and blood pressure go low at the...
  6. JuliaMaple

    Narrowing of pulse pressure when standing, what is it called?

    Hey there everyone, I was wondering what the following (below) should be called. I think its not POTS, does not look like orthostatic hypotension, but what is it? I sort of have POTS/orthostatic intollerance as a diagnosis right now, but its not a set one yet as the doctor does not know for...
  7. JuliaMaple

    Improvement after food poisoning

    Interesting topic. I experience something that is not the same, but its like it a little bit. A day before I get a cold, or the flu I often feel really good and energetic. Even when I already feel the symptoms of the cold or flu coming on. For some reason, I feel great, and then the next day the...
  8. JuliaMaple

    Medication side effect, tongue weakness

    Hey everyone, Sorry, this is a bit of a weird one I guess. Mestinon/pyridostigmine gives me a weak tongue, especially the sides become so sluggish that they almost feel paralyzed. This freaks me out a bit. When it happens I cannot speak well, because the tongue does not work along especially the...
  9. JuliaMaple

    A fresh start (6)

    Today is not a good day. I feel so tired, so incredibly tired and sleepy. I feel like I cannot wake my body up. I have a cold sore, but do not have a fever. So that's not it. I have tried to figure out why today is so horrible, I measured my blood pressure and heart rate. My blood pressure is on...
  10. JuliaMaple

    Has anyone had their illness triggered by the cold sore/herpes simplex virus?

    I strongly suspect that there is a relation between the herpes type virus and my health troubles. My ever lasting fatigue started, and never ended, after having the cytomegalovirus when I was 16. (also from the happy herpes family) When my mother was pregnant of me, she had a bad case of...
  11. JuliaMaple

    Midodrine, fludrocortison and blood pressure question.

    Hey there again, I took Midodrine slightly more then two hours ago and this is what has happened so far: Before Midorine: (did have fludrocortison two times already 0.65mg twice and 1.5 liters of water (11 in the morning) BP 103/64 HR 64 BP 102/60 HR 63 (Did it twice, to make sure it was done...
  12. JuliaMaple

    Midodrine, fludrocortison and blood pressure question.

    @adreno , thank you for your reply. This was checked some weeks ago (because I take fludrocortison). Bot the GP and the neurologist have seen the results. So I expect the electrolytes to be ok. @MsJustice , that is very interesting. I do get you on that. I had such difficulty with thinking...
  13. JuliaMaple

    Midodrine, fludrocortison and blood pressure question.

    Hey there everyone. I have a question. I have fludrocortison as medication (for some months already) and midodrine was added to it recently because the fludrocortison is not effective enough. (it worked at first, but not anymore) BP is still on the lower side and the idea is that the blood flow...
  14. JuliaMaple

    Comment by 'JuliaMaple' in 'A fresh start (4)'

    @taniaaust1 Thank you very much for your replies, they have been very useful to me because you where very right. I realized you where a little while ago. Every time I take good rest, I get a slightly more clear head the next day. Every time I push myself, I can be in trouble for several days. I...
  15. JuliaMaple

    A fresh start (5)

    Hey there everyone, I wanted to write a short update, but also apologize for not (yet) replying to the comments made under my previous blog post. I have not been well, and do not use the computer as much because I am simply too tired often. I pretty much do nothing at all when its as bad as it...
  16. JuliaMaple

    Anyone else with high histamine and insomnia?

    Hey there @heyitisjustin, thank you for your reply. I am sorry that I only noticed it now, I realize it has been quite a while. But I wanted to reply so here it is. I agree with you very much, but have found that it is so very hard to get the hospital to do any testing. When the histamine thing...
  17. JuliaMaple

    Anyone else with high histamine and insomnia?

    I had high histamine as well, and follow a low histamine diet now. I used to be unable to fall asleep if I had eaten the wrong type of food or had something with alcohol in it, which is very high in histamine. For me there 'definitely' a strong link between histamine and problematic sleep. (also...
  18. JuliaMaple

    Feeling hot and exhausted.

    You guys (@Hutan @taniaaust1 @wastwater @kangaSue @actup ) are awesome, your replies have so much value! I really consider this to be a possible cause. Now that I read all of this, it seems obvious that it really 'can' be one of the problems that is seriously pestering me. I once asked my GP...
  19. JuliaMaple

    Feeling hot and exhausted.

    Not the first years of illness :) It started when I was about 16, after having the cytomegalovirus. It never left. I am 32 years old now. The POTS 'sort of' diagnosis is new though, only a couple of months ago. I have no other diagnosis so far. And the horrible feeling of being too warm/hot all...
  20. JuliaMaple

    Feeling hot and exhausted.

    Hey everyone, I was wondering if anyone recognizes these symptoms, and if there is some advice or information that might be helpful. I have other symptoms too but feeling feverishly hot all the time is a big one for me. I constantly feel very very very hot. So hot that I feel really ill. I...
  21. JuliaMaple

    A fresh start (4)

    Hello everyone, It has been a while.. I stopped visiting Phoenix Rising for a time because other things happened in my life, some complicated turns in life made me too tired to focus on anything else. The medication was working, I felt better on that part. Not 'great', but slightly stronger in...
  22. JuliaMaple

    A fresh start (3)

    Some new things have happened and I wanted to write a bit about it. The biggest update is that the dose of Fludrocortisone was made a bit higher, instead of two 65.5 mg tablets, its now three. They are spread through the day, to prevent a late morning crash, so one for the early morning, one for...
  23. JuliaMaple

    Comment by 'JuliaMaple' in 'Taking a stand'

    The 'I am never going to give up' is the best, never give up. And I know its not worth a lot, but I believe you! Wish I was a doctor.
  24. JuliaMaple

    Comment by 'JuliaMaple' in 'A fresh start (2)'

    @taniaaust1 , you are right, I have not mentioned that yet. I do try to figure out what to do with salt/sodium intake. I have not had any advice about it yet. I think the doctor wants to see how I am doing on my normal salt intake combined with the fludrocortisone. I already consumed a bit more...
  25. JuliaMaple

    Comment by 'JuliaMaple' in 'A fresh start (2)'

    @Jackylberry , The doctor informed me about the potassium levels, we are going to test the levels three months after I started using the flucrocortisone. So I think that will be ok. He did not want me to take potassium yet, as it can get too high as well. I am not sure if I have bradycardia, it...
  26. JuliaMaple

    How would you describe your brain fog?

    Me too, it describes it really well. And I think IQ does get lower when there is brain-fog. I once did a little experiment with an online test that was about spatial thinking. Which is a part of the IQ test that I am usually really good at, I could go through the challenges quickly. But now...
  27. JuliaMaple

    The brain-fog recipe, what is yours?

    What combination of things would give you a really bad brain-fog day? In other words, what is your worst 'bad brain-fog recipe?' Maybe we can help each other a bit, not by following the 'bad brain-fog recipe' of course, but by understanding which things trigger brain-fog episodes for others and...
  28. JuliaMaple

    How would you describe your brain fog?

    That is interesting, I am definitely going to do that. I was just thinking, normal sleeping is also a dimming of consciousness. In a way the body creates a sort of anesthesia for itself, to be able to sleep. Maybe for some people with brain-fog, it could be caused by a natural sort of anesthesia...
  29. JuliaMaple

    What Are Your Most Amusing (Or Disconcerting) Brain Fog Experiences?

    So interesting to read all these stories/examples. One thing I constantly have, again and again, is troubles with making coffee in the morning. I fill the water-tank so that the machine can make the coffee, and then walk to the trash bin for some reason and throw the water in the bin.. .. then...
  30. JuliaMaple

    How would you describe your brain fog?

    I never knew what to compare the feeling of brain-fog with, until I had my appendix removed, ofcourse under general anesthesia. When you wake up from anesthesia, there is this huge fog over you as well, the brain is numb and does not work properly. There is this inability to fight it. I felt...