Random questions about recovery, macropsia, meet ups, etc.

[K.B.Fante]

I've had a handful of questions floating around my head lately and thought I'd post them here to see if anybody else relates or has answers. Please feel free to weigh in on whatever... 

 

1. Has anybody ever heard of someone essentially waking up from HPPD? So basically you have HPPD one day then the next it's completely gone? What about a super-fast recover where over the span of weeks or even a few months you go from full-blown HPPD to recovered? I'm just curious as it's becoming apparent during my recovery that this is an extremely slow process with very few "breakthroughs," if any at all. I've had some days where I feel a noticeable difference from the day before but mostly it's just very very small improvements over the course of weeks and months. 

 

2. Does anybody else have macropsia or micropsia? If so what drugs did you take to get your HPPD? I'm closing in on eight months here in a few weeks and one of the more disturbing symptoms I still have is very bad macropsia, where objects near my eyes grow bigger as they get closer while the background of my vision turns totally blurry. I didn't notice this too much in the beginning but it's one of my symptoms that's stuck around the entire time and improved at a very slow rate. I'd say it's probably my worst symptom at this point because I have long hair and anytime it gets in my face or I go to brush it away I aggravate my symptoms. It's also extremely tiring on my eyes because I can't shift my vision from objects close to those far away without there being a lag and adjustment in focus. I just can't understand how taking acid would literally affect how fast I could move my eyes from one thing to another. It doesn't make any sense -- although, like everything with HPPD, I'm sure there's a logical explanation. 

 

3. Does anybody have any recommendations for sleep meds? I've never been the most consistent sleeper and with HPPD I've had even more fluctuations. I want to find a med that will help me stay asleep but I'm a bit nervous about taking something that will make my symptoms worse. 

 

4. Has there ever been an HPPD meetup? I know we're all pretty dispersed across the globe but I figure it'd be great to actually meet some people with HPPD and hang out for a weekend to share war stories, trade information, tips and just to connect in general. Even if it was once a year it could really give us all something to look forward to and bring more awareness to our condition. Just a thought. 

 

Thanks in advance for any feedback. 

[db123]

Hey I just wanted to say that a meet up with people would be awesome. It would be great on me to be able to talk one on one with someone who is experiencing this or has.

[umit]

Yea its posible to recover fast buth you need to pass trought double hell

[neffbull]

For number 2, have you thought about cutting your hair? One of the biggest things that has helped me recover, and from what I have read from most people recovering from hppd, is stress reduction. Your hair triggering symptoms of HPPD doesn't sound like it is helping you recover.

 

For number 3, there is a medication called clonidine that is a sedative and has at least one published report of someone being apparently cured. http://www.ncbi.nlm.nih.gov/pubmed/10836284

[K.B.Fante]

Thanks Neffbull. I'm actually trying to grow my hair out in solidarity with my HPPD. I know that sounds weird but I don't want to cut it until I'm completely recovered. Could be a while! It actually doesn't bother me too much anymore because I just pull it back. My hands coming close to my face is more the problem. 

 

I'm also comitted to going med free for a while but I'll consider that one if I decide to go back. Thanks again for the suggestion though. 

 

Also, you mind expanding on how a reduce in stress has helped you? I have anxiety so this one's tough. Did you notice a big reduction in your symptoms without stress then?

[neffbull]

Sorry about taking so long to respond. I didn't realize that the site doesn't send notifications that someone replied. 

 

What I've found that helps reduce my stress with out medication are the following:

• Running a couple miles a few times a week. Typically my visuals are worse when running so don't let that discourage you. Just do your best to push on if that happens. Running not only places you in a meditative state but it causes a wide variety of positive changes to the brain (https://en.wikipedia.org/wiki/Neurobiological_effects_of_physical_exercise)
• Seeing a talk therapist. I personally see one once a week. It is incredibly relieving to have someone who you can talk to about everything and anything and know that what you say won't end up as gossip. If you have ever had a heart to heart with someone, think about it being like that only this person has a degree in having heart to heart conversation and finding possible solutions to what is upsetting you.
• Avoiding caffeine. Sometime I can drink caffeine without an increase in symptoms but it isn't worth the risk. If I'm tired then it just means that I need to turn off the tv and go to bed earlier.
• Avoiding nicotine. Tobacco has been shown to increase ones base line anxiety, so it's best to avoid even if it gives you a brief sense of relief.
• Not withdrawing social. It has been shown that people with social support who deal with any type of trauma tend to recover better than those with non. With significant anxiety this is hard, I've been a shut in for the past year, but it can be done. I'm currently attending an anxiety support group and I typically feel a huge sense of relief by the end of the meetings.
• Finding a something to distract you. When my anxiety gets really bad I find fast past first person shooters help distract me long enough for my anxiety level to go down.
• Accepting my current situation. We cannot time travel and stop this from happening. Based on who we were and what was happening in our life, it made total sense for us to ingest the drugs that lead us here. Talk therapy has helped with this one.
• Maintaining hope.

This quote has helped me immensely when I was struggling to push myself; "Discomfort is where change takes place." http://www.muscleandfitness.com/athletes-celebrities/hero-maker-celebrity-trainer-duffy-gavers-keys-success