brendan Posted April 11, 2014 Report Share Posted April 11, 2014 We know hppd is similar to ptsd, but another one strikes me as analogous - land sickness, or mal de debarquement, is a lasting feeling of being on a boat after landing after a time at sea. It can be permanent in the worst cases. But also comes with things like head pressure, anxiety, brain fog, difficulty finding words, short term memory problems, fatigue, light sensitivity. Clonazepam seems to be the med of choice for severe cases. There seems to be some research going on for this, and may come up with something relevant for us. 5 Link to comment Share on other sites More sharing options...
brendan Posted April 11, 2014 Author Report Share Posted April 11, 2014 i;ll copy and paste treatments i come across from a quick googling: "A friend told me to take Black Cohosh, Valerian Root and Gingko Biloba and within a week of taking them, I was normal. (tho it seemed to come back - placebo?)" Brainport: http://en.wikipedia.org/wiki/Brainport (therapy for stroke victims, puts imaging on tongue to help blind 'see', helps with visual processing) Self-Reported Effects of Therapy/Activity on MdDS Symptoms Percent (%) of Treated Therapy/Activity Number Treated/ Improved/No change/ Worsened walking 69 48 42 10 resting/taking naps 65 63 25 12 vestibular therapy 51 45 41 14 physical therapy 42 38 50 12 neck/back massage 41 37 54 10 swimming 35 34 46 20 floating on water 34 38 29 32 treadmill 30 17 37 47 chiropractic neck adjustment 27 33 59 7 return to causal motion event 26 15 46 39 dancing 24 33 25 42 accupuncture 23 35 61 4 weight lifting 22 14 73 14 water walking 21 43 52 5 jogging 20 35 35 30 yoga 19 42 47 11 homeopathy 15 33 60 7 running 15 20 47 33 stability balls 15 33 60 7 balance board 13 39 31 31 resistance bands 13 31 62 8 chiropractic atlas realignment 12 50 50 0 cranio-sacral therapy 11 36 55 9 pilates 10 20 80 0 golf 10 30 60 10 Tai Chi 8 50 50 0 osteopathic manipulation 7 29 57 14 reflexology/zone therapy 7 14 86 0 hypnosis 6 17 83 0 inversion table 6 0 50 50 elliptical glider 5 20 60 20 tennis/racketball 5 20 40 40 Alexander technique 4 0 100 0 skating 4 50 25 25 biofeedback 3 67 33 0 Brainport 3 100 0 0 Zen Chi machine 2 50 50 0 neuromodulation 2 0 100 0 hyperbaric chamber 2 0 100 0 Qigong 2 50 50 0 rolfing 1 100 0 0 kinesiology 1 0 100 0 occipital nerve block 1 0 100 0 1 Link to comment Share on other sites More sharing options...
swissms Posted April 13, 2014 Report Share Posted April 13, 2014 Brendan, I joined this group at your suggestion but almost all the postings I see are of visual perceptual alterations, not proprioception difficulties. Jessica suggested Keppra and Lamictal as meds. But amid so many posts, I can find specific references to these drugs as helpful to proprioceptive disturbances. Can you help? Sharon 1 Link to comment Share on other sites More sharing options...
brendan Posted April 16, 2014 Author Report Share Posted April 16, 2014 hppd comes with a variety of symptoms, some more disturbing to the sufferer than others, and some more common than others. Visuals is most common, but also emotional issues like depression and anxiety, cognitive issues like brain fog, depersonalisation/derealisation, vertigo etc. However, they are generally treated as a bunch, so even tho someone may mainly have visuals does not mean that their experience is irrelevant to someone like yourself. Mdds is typically treated with clonazepam, which is also a common treatment for hppd. Personally, my hppd is not too bad with visuals, my issue is more like mdds with (sensation of movement with fatigue and head pressure). I also have brain fog which i effectively treat with supplements. i havent found anything to help my mdds-type symptoms tho i havent tried any of the harder meds. 2 Link to comment Share on other sites More sharing options...
Hppdsince1974 Posted April 17, 2014 Report Share Posted April 17, 2014 We know hppd is similar to ptsd, but another one strikes me as analogous - land sickness, or mal de debarquement, is a lasting feeling of being on a boat after landing after a time at sea. It can be permanent in the worst cases. But also comes with things like head pressure, anxiety, brain fog, difficulty finding words, short term memory problems, fatigue, light sensitivity. Clonazepam seems to be the med of choice for severe cases. There seems to be some research going on for this, and may come up with something relevant for us. Seriously?!!?? I had this - for many years, but it came on a long time after my hppd began. I used valium to abate it. Where did you hear about a connection with hppd? I had a very severe problem another many years later and the intervention for that, interestingly, did seem to cure me, at least of the "vertigo" or "disembarkment syndrome." Details in PM if interested. 1 Link to comment Share on other sites More sharing options...
alice-acid Posted April 17, 2014 Report Share Posted April 17, 2014 wow thats interesting, it certainly strengthens my personal belief about HPPD being a form of PTSD, as i think land sickness could be. however i dont have as much knowledge as alot of people on this board about the neurological links/causes of any of these things, its just not my area. the similarities in symptoms and causes just baffle me 1 Link to comment Share on other sites More sharing options...
Hppdsince1974 Posted April 17, 2014 Report Share Posted April 17, 2014 my view of the relationship between hppd and ptsd is that the onset of hppd is terrifying and traumatic; i think it's the hppd that causes trauma; you could make the case that the drug effects resulting in hppd can be considered traumatic in their own right - but not everyone has bad traumatic trips before the hppd onset.. 1 Link to comment Share on other sites More sharing options...
brendan Posted April 30, 2014 Author Report Share Posted April 30, 2014 mdds is often described as the brain making a new model of reality that does not revert back. I guess this is what hppd is about, and maybe ptsd too. 1 Link to comment Share on other sites More sharing options...
BigPapaChakra Posted May 2, 2014 Report Share Posted May 2, 2014 I recommend z-health and/or the interactive metronome for HPPD and MDD. Z-health has some of the vestibular training that some with MDD have had success with, yet it also has literally thousands of exercises for the tempo-parietal areas and others, let alone the eyes, sensory gating, etc. The interactive metronome is similar, though using technology and games and is even being used now to treat traumatic brain injury, Autism, ALS, and a lot of other things (even improving working memory and behavior). Although I suspect all my problems are HPPD related, I do have proprioception issues, and have no clue if it's due to dissociation, or something else. This is especially true when I get on an elevator or do some physical activity in which I'm switching directions frequently (for instance, jiu jitsu); sometimes when I get on an elevator then it stops, I get this falling sensation that persists for minutes, or sometimes, dozens of minutes, and can get quite severe (making it difficult to walk and making me extremely anxious). 1 Link to comment Share on other sites More sharing options...
brendan Posted May 3, 2014 Author Report Share Posted May 3, 2014 i wonder if that sense of lift persisting or other mdds vulnerability is predictive of hppd vulnerability. I used to get that but not any more, tho it might be more hidden under the background mdds-type symptoms. 1 Link to comment Share on other sites More sharing options...
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