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Dr. Diana, both a doctor (therapeutic optometrist), and a recovered POTS and ME/CFS patient, offers help and hope for POTS, Dysautonomia, Ehlers-Danlos syndrome, Chronic Fatigue, Chronic Lyme, vascular abnormalities, Fibromyalgia, and Multiple Sclerosis. Dr. Diana is now working full time at POTS Care.

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Has Anyone tried Feverfew?

NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › Orthopedic/Joint › Has Anyone tried Feverfew?

  • This topic has 14 replies, 4 voices, and was last updated 9 years, 6 months ago by EDS99.
Viewing 15 posts - 1 through 15 (of 15 total)
  • Author
    Posts
  • August 25, 2013 at 6:19 pm #552
    EDS99
    Participant

    Please post with your experiences. I have tried it. It contains an array of compounds that work on NF-kappaB, motor end plates, and contain Quercitan, apigenin, and luteolin (as well as others as mention in literature by Theoharides).

    See:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3210009/?report=classic

    http://m.neurology.org/content/78/17/1346.full
    (Note: butterbur is GREAT or my occiptal headaches but only use Petadolex for reputable safety profile )

    http://www.mskcc.org/cancer-care/herb/feverfew

    Anyone know about this???

    EDS99

    Sorry this is in “orthopedic joint forum”. How do I change it to the right place?

    August 25, 2013 at 6:26 pm #4211
    Lab-Scientist-Lady
    Participant

    No, but thanks for sharing.

    August 26, 2013 at 10:56 pm #4226
    sixboots
    Participant

    Both my daughter and I have tried it for headaches. I used to much and it made me sick. It did get rid of the headache however.

    August 26, 2013 at 11:15 pm #4227
    EDS99
    Participant

    How much did you use and what kind? How long did you use it for? I find it reduced my foot pain and spasms. While I would not describe myself as a nervous personality, I felt calmer…. more serene. It also allowed me to avoid going back on Butterbur full time. It did reduce my occipital headache to 10% it actually removed my migraine aura completely.

    I take the Gaia (CO2 extract ) 2 x’s a day.

    August 27, 2013 at 9:34 am #4228
    sixboots
    Participant

    We used a liquid suspension. I used a dropper full. I can’t seem to find the bottle so I can’t tell you the company or the exact dosage. Sorry, I’m not much help.

    August 27, 2013 at 10:46 am #4229
    EDS99
    Participant

    Oh you used probably the alcohol extract. You must have used a lot because in the studies I was looking at, the alcohol suspension was shown not to be effective for migraines. I don’t doubt that it witked for you because these studies draw from a group’s outcome and nit an individuals. But perhaps the alcohol had something to do with feeling ill maybe? I can’t tolerate alcohol so this is why I say this.

    August 27, 2013 at 1:09 pm #4231
    Lab-Scientist-Lady
    Participant

    Do you take it everyday or just when you have a headache? I am battling a headache right now that won’t go away!
    Shonda

    August 27, 2013 at 10:27 pm #4234
    EDS99
    Participant

    Feverfew is best migraine prevention. Butterbur (Petadolex) is proven for migraine headaches…. I believe that is listed in one of the links I posted (evidence based one). The Butterbur was a direct ‘hit’ to my occipital headaches. Feverfew extinguishes my painless migraine auras. I don’t take both at the same time.

    August 27, 2013 at 10:48 pm #4235
    Lab-Scientist-Lady
    Participant

    Thanks again for posting this.

    August 31, 2013 at 12:43 pm #4245
    Dr. Diana
    Keymaster

    Hi everyone, I can’t hear about our headaches without mentioning the potential for headaches due to a “special form” of hydrocephalus that we are very prone to getting. I’m about to wrap up the treatment trial sign up, and have gotten through about a third of the patients, but every single one of them had this form of hydrocephalus, which is usually easily treated by EYE DOCTORS! 😉 It is THE major cause of the headaches that start at the lower base of the skull and radiate down your neck to the tops of your shoulders. It is also a terribly underdiagnosed cause of migraines. Please don’t let me miss any of you who may have this! I can usually tell, just by reviewing your symptoms checklist. If you are wondering if this may be the cause of your headaches, I will review your symptoms checklist and let you know (just holler at me via Clinical_Trials@Prettyill.com). Please let me know on the email that is what you are contacting be about, OK? Symptoms checklists can be found under “Articles and Handouts” — just scroll down. This should take you directly there: http://prettyill.com/resources/view/symptoms_checklist_for_chronic_fatigue_syndrome_m.e
    This type of headache is horrible, and it can easily be eliminated, if you fit the profile. Please let me help you if I can! 😉

    September 3, 2013 at 11:31 pm #4265
    EDS99
    Participant

    Diana, if we are successfully being treated for a headache how do I still fill out the symptom form? Without treatment or exactly how I feel now.

    September 4, 2013 at 7:59 pm #4268
    Dr. Diana
    Keymaster

    Diana, if we are successfully being treated for a headache how do I still fill out the symptom form? Without treatment or exactly how I feel now.

    Great question! Normally, I would say “unmedicated”, but can you tell me what you are taking for your headaches? Topamax, for example, has Diamox in it, which lowers intracranial pressure, meaning you’re being treated for hydrocephalus, but with additional ingredients you may not need, and it may be covering up the “real” problem. Lemme know? Thanks! 🙂

    September 4, 2013 at 8:33 pm #4270
    EDS99
    Participant

    Daily:
    Gastrocrom
    Ketotifen
    Zyrtec
    Claritan
    Feverfew
    LDN
    88 mcg tiroscint
    5000 mcg methylcobalamin
    5000 IU Vit D
    querciten

    PRN:
    -turmeric extract or just ground turmeric/Never use NSAIDs
    -Rhodiola
    -Butterbur
    – 2 mg valium for spasms (which diminished a/ feverfew so I hardly take it)

    I don’t think there is much in there is much affecting the brain pharmaceutically except possibly the ketotifen and LDN. Feverfew, Butterbur, B12 & rhodiola affect the brain.

    Adding an edit : I won’t go without my feverfew or Butterbur … I did once and my headache came back within hours of going without. This was before feverfew and LDN. It was also after being in the MCAS meds for a year.

    September 6, 2013 at 7:50 pm #4303
    Dr. Diana
    Keymaster

    EDS999, In our family, once we started Ketotifen, we were able to drop Chromolyn — which is AWESOME — not only is it expensive, but the 4 times a day dosing, with an empty stomach, was a killer!! Especially for my kids in school! 🙂

    September 6, 2013 at 10:27 pm #4306
    EDS99
    Participant

    Oh Wow! imagine all the phthalates you all get to avoid! Do your kids thank you daily for making there lives a little more phthalate free?? 🙂

    I thought that could be done…. but no one ever said I could. I substituted 2 Quercetin for two doses of cromolyn (Q. shown to wirk differently and has more ‘staying’ power) and then down to one on the cromolyn w/2 Quercetin.

    How long did it take for one to know… for sure… that the Cromolyncan be dropped? I’m figuring that since it took a while to work up to a certain level and for it to work that it may take a while to stop working.

    How much ketotifen do you take?

    And yes, I understand everyone is individual and that only my MD and I can decide what is best for my individual situation. (Just wanted to save you some typing…:-)

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