2019 Melbourne Conference – Medications

These notes summarize the discussion in the Conference Session where attendees shared their experiences on the topic of “Drugs” where they described the medications they have been prescribed and the effects they had noticed.

This is not a scientific study in any sense and responses vary from person to person, but there are some common themes.

  • No one medication works for everyone.
  • Different people have different responses (effectiveness and side-effects) to the same medication.
  • Most people have tried more than one medication since their OT diagnosis.
  • Concurrent medical conditions and possible medication for those complicates the picture.

Because the same pharmaceutical drug may be marketed under different names, a table of brand and name equivalents was circulated to help.

The comments are in roughly chronological order (oldest to current) for each OT patient.

  1. Lyrica (swelling and weight gain), then Clonazepam (felt like a zombie, mentally very “fuzzy”), dabbled with Cannabidiol (CDB) Oil (no real improvement) and now 2mg Fycompa.
  2. Clonazepam (made me bad at Bridge), Lyrica (worse), no medication, 4mg Fycompa (not a good result), no medication, neurologist suggesting re-try Fycompa at lower 2mg dosage.
  3. Gabapentin and Clonazepam for 15yrs, then 2mg Fycompa (good results, guess 70% improvements in symptoms and can now go up and down stairs without drama).
  4. Clonazepam (1/2 tab did not help, 1 tab worked for a while, now taking 2 tabs with no adverse side effects).
  5. A cocktail of drugs over time: Tegretol (Carbamazepine) was terrible, slept all day with Clonazepam, 2mg Fycompa produced tiredness and depression, currently trialing Low-dose naltrexone (LDN).
  6. Misdiagnosis of Essential Tremor (ET) and Parkinson’s Disease (PD) did not help. Levadopa for PD yielded no improvement. Once diagnosed correctly as OT, on 0.25mg Clonazepam morning and night.
  7. Clonazepam then Gabapentin (bad side-effects to both). Currently taking Primadone at half dosage morning and night, plus a beta blocker to control anxiety.
  8. Prior use of Gabapentin (not for OT) produced “zombie” like mental state, so when diagnosed with OT opted for no medication initially. Changed to 2mg Fycompa with good response to OT symptoms, but noticed vision deterioration, so stopped. Considering LDN with some alcohol (see below).
  9. Diagnosed with ET and OT 18yrs ago, started Clonazepam which dampened the tremor with “not too drowsy” side-effects.  3yrs ago diagnosed with PD, changed to Levodopa and Pregablin (weight control and diabetes issues), tried Fycompa (legs better but vision deteriorated), stopped Fycompa. Considering changing to Sifrol (Pramipexole) for PD.
  10. Clonazepam 1tab for good results. Dentist added Lyrica for an unrelated condition and this led to weight gain and nausea. Then followed a number of experiments to juggle the dosage of both medications.
  11. Initially 300mg Lyrica morning and night.  Currently 300mg Lyrica (morning) and 2mg Fycompa (night).
  12. Tried all the medications! Currently on 150mg Lyrica which works the best, although weight gain is an issue.
  13. No tolerance to Gabapentin. Tried CDB Oil without any improvement.  No medication for 2yr.  Started Fycompa 5mo ago; 1mg produced no real change, 2mg improved standing, higher dosage led to migraines and general unwellness. 2mg Fycompa is producing the best results, but concerned about possible vision changes.
  14. 15yr since OT diagnosis, no medication at all.
  15. Tried all the medications plust CDB.  Also diagnosed with Lupis to confuse the issue.  Most medications worked a little, but none were worth staying on; Fycompa and Lyrica both led to increased depression.
  16. No medications.
  17. 0.5mg Clonazepan at night, considering more during the day.
  18. Gabapentin, then Lyrica for 1.5yr but this led to deep, dark, depresssion, so back to Gabapentin.
  19. Started  with Clonazepam, then Topamax (new neurologist, another epilepsy medication) but this led to weight loss, so tried Gabapentin.  Currently on Fycompa, but suffering tiredness; taking it at 5pm seems to help.
  20. Earlier diagnosis of epilepsy, so Epilum, then no mdeication during pregnancy.  Started Clonazepam but stopped due to depression.  After another stint of no medication, started Gabapentin.  Then no medication during pregnancy.  Switched to Fycompa.
  21. Started with Lyrica and had good results for OT symptoms without side-effects.  After 2yr OT symptoms were getting worse, so increased the Lyrica dosage, but this led to forgetfulness and mental “fogginess”.  Switched to Gabapentin.

As a left-field approach, there was some support from the audience for the findings of  “tremor frequency significantly decreased after alcohol, as did low- and high-frequency tremor amplitude and the extent of body sway” as reported in the published scientific paper Sway patterns in a case of orthostatic tremor responsive to alcohol by Bacsi, Halmagyi and Colebatch.