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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. Vickytoria1988

    Lyrica and its side effects

    Very useful thank you.
  2. Vickytoria1988

    Lyrica and its side effects

    Hello dear all. I would like first to say that this forum has been a big support for me during the darkest moments of my life and also thanks to some discussions here I decided to marry although I have been terribly sick. I have spent 5 full years of daily persistent headaches together with my...
  3. Vickytoria1988

    ME/CFS Comic Series

    I just wanted to congratulate u for your work, I really enjoyed your comics, especially the one describing how lockdown has changed nothing in our lives. I would also like to draw comics but I dont know how to do it if not by hand, plus headaches dont allow me to do much. However my imagination...
  4. Vickytoria1988

    Have u seen this plastic ball for hamsters?

    Great news for those who understand. Diagnosis of fibro came! Yeee!!! So i can now know what i have on top of CFS abd crazy headaches (and do what i have to - not a big choice if treatments though :rofl:). So I can explain to normal people that I have sth that sounds more concrete, less spooky...
  5. Vickytoria1988

    Thinking of getting a dog or a cat. Your experience?

    Hi, a pet is a great idea. I got one puppy when i was almost about to crack psycologically in a million pieces. I have a 1.5 years old Maltese now and I can tell u it is a kind of breed that fits us well, as patients. They are calm, dont leave hair on bed and if trained a bit they can be your...
  6. Vickytoria1988

    6 BOOKS THAT HAVE MADE IT EASIER TO LIVE WITH M.E.- THE CHRONIC ELEPHANT

    I read your article.... so good! What a lovely person u are.
  7. Vickytoria1988

    Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

    They need a Cine MRI or "MRI showing flow of celebrospinal fluid". Because Chiari can be non-pathological as it is my case. My fluid ariubd brain does not get blocked anywhere and my Chiari is innocent. The doctor from Harvard said so and it was crystal clear in the MRI. The Cine MRI is a video...
  8. Vickytoria1988

    SIDE EFFECTS OF MEDICATION

    Thank you so much for responding. This information is quite relieving. Stay well & happy!
  9. Vickytoria1988

    SIDE EFFECTS OF MEDICATION

    Hi dear co-travellers, It has been a long time since I have not been active in the forum. Thanks to Cymbalta x 60mg per day, Clonotril/Rivotril (clonazepame) x 2 mg per day and 9 Neurontin x 300mg (similar to Lyrica) per day. I am almost two years medicated in order to cope with excessive...
  10. Vickytoria1988

    Neurontin

    Ηι @Andrea. I am so sorry for responding late. I had nerve pressure and pain all over my haid (but not spine and neck) and I did 8 months of acupuncture (it was exhausting). In the end the only pain remaining is on top of my head, just in the middle where my hair starts. I then assumed it is a...
  11. Vickytoria1988

    Neurontin

    Ηi all, I have quite good news. My doctors gave me Cymbalta + Neurontin and pain has got down 90 %. I only feel some pressure in my head. I am still exhausted though. Cymbalta works really good. I had only one sleepless night the first day due to bad stomach. I continue my battle with these...
  12. Vickytoria1988

    Neurontin

    oh I see. Well my neurosurgeon said to me it is only symptom relieving and not a cure, however he said it also "builts up" a bit the nerves i.e. somehow helps them heal. So I am afraid that if I stop my nerve pain (unfortunately on top of my head) will come back and knock me down. The worse is...
  13. Vickytoria1988

    Neurontin

    thanks @Wonko , I am afraid of symptoms coming back. My pharmacist said it just eases symptoms. Lets see.
  14. Vickytoria1988

    Neurontin

    Hi all, I have a question regarding Neurontin. I have severe nerve pain in the head and my doctor gave it to me (9 pills * 300mg daily). Its the second week and I feel better. Has anybody cured his/her neuropathy with Neurontin or it just eases symptoms? Thanks so much for your reply :)
  15. Vickytoria1988

    Comment by 'Vickytoria1988' in 'Denial Is Not Just A River in Egypt-The History of Elephant Art. Part 4-'

    I like your work very much!!!!! U re such a kind soul!!!
  16. Vickytoria1988

    What are you able to do on a good day?

    its nine months since my big crash and I am still exhausted and passing my day in bed in a status of ''nirvana''. I do not read or watch movies because it feels overwhelming for me. I try to keep my days free of many stimulus, I avoid noise and for the first time I avoid my friends a bit. I...
  17. Vickytoria1988

    Hot springs - have you thought about it?

    Hi all, In this journey of my illness with severe pain in the nerves (head, legs...), I discovered that hot springs are a very effective and cheap way to ease symptoms, or even eradicate them. I experimented with hot springs in Greece and I have been offered my best days. Meds and rest offered...
  18. Vickytoria1988

    Fibromyalgia and migraine pain -help

    Hello, I had some headaches as a child. Have you done an MRI of both brain and MRI of upper part of the spine? This is important to exclude any problem. Some things do not show on MRI of brains so its crucial to do the second one too. Acupuncture has been my life saver but it depends on the...
  19. Vickytoria1988

    Chiari 1 - please inform yourself on this

    http://www.nytimes.com/2009/09/03/fashion/03SKIN.html?_r=1&scp=1&sq=migraine%20plastic&st=cse I found this link, previously also posted here by @Cort (Thank you so much.). I also visited the website of the mentioned Doctor: http://drbahmanguyuron.com/ I somehow know that the excruciating pain...
  20. Vickytoria1988

    Comment by 'Vickytoria1988' in 'Interesting conversation with Mom - Nobody gets it'

    Makes sense to me too. Definitely.
  21. Vickytoria1988

    Chiari 1 - please inform yourself on this

    Thank you very much @Sushi.
  22. Vickytoria1988

    Brain inflammation?

    hi, I did not read all this thread in detail. I would definitely do an MRI of brain and MRI of upper neck to be sure and double check there is no Chiari 1 there. I read that herniation of tonsils of the brain of even 3mm can cause the symptoms you describe. I got a proper diagnosis (i have...
  23. Vickytoria1988

    Chiari 1 - please inform yourself on this

    Hi @NotThisGuy ....thank you for your reply. I take Effexor as I do not see any other solution for the moment. I am very worried but I need to find sth to help me with all this pain. I start having serious memory problems, like not forgetting only moments but entire chapters. Lets hope...
  24. Vickytoria1988

    Chiari 1 - please inform yourself on this

    @Kina what means EDS?
  25. Vickytoria1988

    Chiari 1 - please inform yourself on this

    Hi @Alvin2 yes it is the same. There are four types, Chiari 1 is what I have.
  26. Vickytoria1988

    Chiari 1 - please inform yourself on this

    @perchance dreamer , the story is very similar, thank you so much for posting.
  27. Vickytoria1988

    Google: No results found for "experiencing pain from noises".

    I am hypersensitive to noise and I definitely have misophonia. I would be perfectly happy in a world at mute mode. I cannot listen to the news or watch tv easily bcz I get annoyed. I hate when people talk loud or shout, I get in a shock somehow. The sicker I am the sickest I get with noise. I...
  28. Vickytoria1988

    Chiari 1 - please inform yourself on this

    Hi all, There are more useful threads about Chiari 1, but I would like to bring to the surface my relevant story. Who knows, I may help somebody. I have been suffering with vertigo during my early years 16-19. When I was 21 a non-stop headache started and I became almost invalid from...
  29. Vickytoria1988

    What induced your ME?

    EBV in 2005. Then I did a very intense erasmus in 2009. My life changed from this date. It got really really bad.
  30. Vickytoria1988

    What are your worst symptoms?

    Hi all!!! What are your most debilitating symptoms? I remember I could work full time with extreme fatigue but with headaches (brain inflammation to my opinion) I am useless. I try to understand the nature of this illness and how it works in each of us, we are all different. I will be happy...