I would like to ask those users of the board who have participated in Sofia Greene's internet survey to provide me with the (possibly complete) data about
treatment attemps, whether effective or not. You can post these data here at the board or send them to me via email kpodoll@ukaachen.de I would need the
following data for each treatment attempt:
1. Name of medication (generic or chemical name)
2. Maximum dosis taken
3. Duration of treatment
4. No effect or positive effect (if positive effect, please describe)
5. If positive effects, how long did it take to get the positive effect?
5. Unwanted side effects
I can correlate these data with the clinical data from the questionnaire and one can assess, for example, whether there is an association between response and dosage, response and duration of treatment, and, most importantly, response and duration of symptoms.
____________________________________________
List of Helpful Medications/Other things that have helped:
____________________________________________
Medications
Flunarizine (5mg - long term/continuous)
Notes:
Masssive, rapid improvements to dizziness/vertigo.
Gradual but strong improvement in snow/after images
Improvements in Halos/Starbursts/Miscellaneous visual phenomena
Listed side effects include: Trembling, Depression, Weight Gain - all reversible. No side-effects so far reported from users.
However: Effects can wear off over time (6 months-year), increasing dosage may help with this.
Prednisone (60mg - 7days + taper off over following week)
Notes:
Significant general improvement in symptoms.
Listed side effects include: increased blood sugar for diabetics, weight gain, facial swelling, depression, mania, or other psychiatric symptoms, unusual fatigue or weakness, mental confusion / indecisiveness,
blurred vision, abdominal pain, peptic ulcer, infection, painful hips or shoulders , osteoporosis , insomnia, severe joint pain , cataracts, anxiety, black stool, stomach pain or bloating, severe swelling, mouth sores or dry mouth, Avascular Necrosis, stretch marks, nervousness, acne, rash, increased appetite, hyperactivit, frequent urination, diarrhea
Alprazolam/Xanax (2mg twice daily - long term/continuous)
Notes:
Reduced static/snow intensity approx. 50%
Listed side effects include: euphoria, drowsiness, decreased inhibitions, hallucinations, agitation, light headedness or fainting, urinating less than usual, headache, fatigue, joint pain, speech problems, Short term memory loss, changes in appetite, blurred vision, constipation, diarrhea, nausea, altered sex drive, dry mouth or increased salivation, sweating, skin inflammation
No side effects reported from users, besides "feeling tipsy"
Keppra/Levetiracetam (1500-2000mg, long term/continuous)
Notes:
Small improvements to snow intensity and reduced frequency of derealisation. Improvements are small but scale up slightly with dose untill 2000mg where they seem to level off. Improvement in frequency of DR has been noted on as low as 1000mg.
Listed side effects include:hair loss; pins and needles sensation in the extremities; anxiety and psychiatric symptoms ranging from irritability to depression.
No side effects reported from users.
Diazepam (2-4mg, daily)
Notes:
Smaller doses have been noted to reduce anxiety. Larger doses over time can reduce colourations in the snow/static
Listed side effects include: Drowsiness, Impaired motor function, Diziness/Nausea, Depression, Anterograde Amnesia.
No side effects reported from users.
Verapamil
Clonazepam/Klonopin
Lamictal
Topamax
Dilantin
Acetazolamide
Divaproex
Vitamin B12
Valium
Oxcarbamazin
Lyrica
Buspar
Effexor
Depakote
Amitriptyline
Tramadol
Non-medicals:
Irlen Lenses
Magnesium Supplements
Energy Drinks
Seasalt
Blueberries
Chiropractice
Calcium Supplements
Tilted atlas correction
1. Name of medication (generic or chemical name)
2. Maximum dosis taken
3. Duration of treatment
4. No effect or positive effect (if positive effect, please describe)
5. If positive effects, how long did it take to get the positive effect?
5. Unwanted side effects
I can correlate these data with the clinical data from the questionnaire and one can assess, for example, whether there is an association between response and dosage, response and duration of treatment, and, most importantly, response and duration of symptoms.
____________________________________________
List of Helpful Medications/Other things that have helped:
____________________________________________
Medications
Flunarizine (5mg - long term/continuous)
Notes:
Masssive, rapid improvements to dizziness/vertigo.
Gradual but strong improvement in snow/after images
Improvements in Halos/Starbursts/Miscellaneous visual phenomena
Listed side effects include: Trembling, Depression, Weight Gain - all reversible. No side-effects so far reported from users.
However: Effects can wear off over time (6 months-year), increasing dosage may help with this.
Prednisone (60mg - 7days + taper off over following week)
Notes:
Significant general improvement in symptoms.
Listed side effects include: increased blood sugar for diabetics, weight gain, facial swelling, depression, mania, or other psychiatric symptoms, unusual fatigue or weakness, mental confusion / indecisiveness,
blurred vision, abdominal pain, peptic ulcer, infection, painful hips or shoulders , osteoporosis , insomnia, severe joint pain , cataracts, anxiety, black stool, stomach pain or bloating, severe swelling, mouth sores or dry mouth, Avascular Necrosis, stretch marks, nervousness, acne, rash, increased appetite, hyperactivit, frequent urination, diarrhea
Alprazolam/Xanax (2mg twice daily - long term/continuous)
Notes:
Reduced static/snow intensity approx. 50%
Listed side effects include: euphoria, drowsiness, decreased inhibitions, hallucinations, agitation, light headedness or fainting, urinating less than usual, headache, fatigue, joint pain, speech problems, Short term memory loss, changes in appetite, blurred vision, constipation, diarrhea, nausea, altered sex drive, dry mouth or increased salivation, sweating, skin inflammation
No side effects reported from users, besides "feeling tipsy"
Keppra/Levetiracetam (1500-2000mg, long term/continuous)
Notes:
Small improvements to snow intensity and reduced frequency of derealisation. Improvements are small but scale up slightly with dose untill 2000mg where they seem to level off. Improvement in frequency of DR has been noted on as low as 1000mg.
Listed side effects include:hair loss; pins and needles sensation in the extremities; anxiety and psychiatric symptoms ranging from irritability to depression.
No side effects reported from users.
Diazepam (2-4mg, daily)
Notes:
Smaller doses have been noted to reduce anxiety. Larger doses over time can reduce colourations in the snow/static
Listed side effects include: Drowsiness, Impaired motor function, Diziness/Nausea, Depression, Anterograde Amnesia.
No side effects reported from users.
Verapamil
Clonazepam/Klonopin
Lamictal
Topamax
Dilantin
Acetazolamide
Divaproex
Vitamin B12
Valium
Oxcarbamazin
Lyrica
Buspar
Effexor
Depakote
Amitriptyline
Tramadol
Non-medicals:
Irlen Lenses
Magnesium Supplements
Energy Drinks
Seasalt
Blueberries
Chiropractice
Calcium Supplements
Tilted atlas correction
