Uhthoff's, optic neuritis & mountain biking

[Mouse]

Hi All,
I'm 2 months in to recovering from optic neuritis & have about 95% vision back, for which I am immensely grateful.
Every time whilst out running, Uhthoff renders me monocular again, which is manageable on the road or trail on foot.
I would like to return to mountain biking soon, but don't know how I will deal with with changing vision as depth perception & judging speed goes out the window!
Will Uhthoff's continue like this? Do I just have to be patient & let it 'heal'? Or do I need to learn how to adapt to this regularly changing visual ability?
Any tips are very welcome.
Thanks.

[teena marie]

Glad things are on the upswing. Hard to say when that symptom stops. You may try cooling. Cold shower before, wear an ice vest, sip ice water, keep wet if temperature requires,etc. There's an excellent review of ice vest here and plenty of posts throughout.

Good luck and keep us posted.

Teena Marie

[Mouse]

Thanks for the rapid response, Teena Marie!

The thought of an ice vest sends shivers down my spine!

I have zero cash at the moment as I've had so much time off work recently, but I will try the iced water tip. I'll try filling my hydration bladder in my rucksack with ice cubes & water & will see how that goes....and maybe pedal slowly to begin with...

I'll let you know how it goes - will try & get out on the trails over Easter weekend.

Ta

[AMFADVENTURES]

In addition to what TM said, particularly the pre-cooling which is a trick even the cycling pro's use to beat the heat, here's a compilation from a previous thread:

Keep moving. There is such a thing as “resting on the bike”, lower the intensity of the effort but keep pedaling to maintain airflow and its cooling effect. Maintaining airflow can be key to staying cool on a bike.

Stop in the shade. Try not to stop any longer than necessary to grab a breath, a pee, a bite or a drink. The longer the stop, the harder it can be to get going again. Even the ambient warm air temp in the shade sucks out nerve function.

Under dress. Dress more for the expected high temperature than the starting temperature. If it’s really cold wear removable arm and leg warmers, use proper cycling clothes that are generally designed for comfort and cooling.

Helmet. A helmet with larger air flow vents seems to be a cooler solution than helmets with more numerous smaller vents. Squirt water on your head frequently.

Water. Carry over sized water bottles. When it really gets hot pour water on yourself. On hot days soak yourself whenever you refill your bottles. Also, as it gets hotter drink more. It makes you pee a lot but the cyclists’ adage is, "if you’re not peeing, you’re not drinking enough" and it’s all the truer for an MSer.

Heat conditioning. By not avoiding rising temperatures during training you may be able to condition yourself to tolerate a slightly higher temperature range. Use caution, it can get pretty uncomfortable and can be devastating.

Cold liquids to cool the core, if you can get liquids with electrolites but not much sugar, all the better. It's amazing how much this helps.

Stay close to civilization, if it really gets bad look for AC.

An evaporative cooling shirt like the Izi Dry Pro, can also help but be aware that it may require frequent recharging. Recharging is not a big deal with these shirts, it merely uses water and the water doesn't even have to be cold.

Arm coolers are another choice in the cooling device category. They are thin white removable sleeves that protect your arms from the sun and are very wicking. Squirt cold water on them from time to time, this significantly helps with cooling.

Just a few things to try, good luck,

Larry

[myoak]

Those who want to research could Google "Oleanolic acid protects optic nerve"

Oleanolic and Oleanic are the same thing, different spelling.

Also, then Google "NU ZHEN ZI". It is a Chinese herb we call glossy privet and is available online. Some people take it based on the above referenced studies hoping to strengthen the optic nerve.

It is a common supplement in China. My wife has taken it daily for about one year. Whether it helps is difficult to measure. But preventing deterioration is a worthy goal, also.

Magic pills do not exist. But it may help the optic nerve for some people based on published research.

[Mouse]

Larry - thanks for all those tips!

I am in the UK, so it only gets hot is we actually have a summer, which is never guaranteed! My helmet needs replacing now, anyway, so thanks for the reminder - I have what we refer to as a 'p*ss-pot' helmet at the moment, so I'll go back to the well vented lightweight models instead.

I went out for an 8 mile trail run in the rain & howling wind yesterday (8 degrees, celsius, about 46F?) in a vest, thin long sleeve top & capri pants, and my eye still 'whited out'. I may just have to try & train my brain to deal with changing visual input if I want to get back on the bike.

myoak - thanks for the info. I can't find any evidence-base for neuroprotection (or other activity on neurons) by oleanolic/oleanic acid, Nu Zhen Zi, or Fructus Ligustri lucidi in my literature searches. It looks as though many Chinese research groups are trying to substantiate its prolonged use by testing different extracts in cell culture (and alarmingly in animal models), but without a huge amount of success.

I found a very recent review, but can't access the full paper as it is behind a paywall:

Nat Prod Res. 2015;29(6):493-510. doi: 10.1080/14786419.2014.954114. Epub 2014 Sep 23.

Ligustri lucidi fructus as a traditional Chinese medicine: a review of its phytochemistry and pharmacology.
Gao L1, Li C, Wang Z, Liu X, You Y, Wei H, Guo T.

Abstract
Ligustri lucidi fructus (LLF) is the fruits of Ligustrum lucidum Ait. (Oleaceae). This review based on nearly 80 literary sources discusses the knowledge of chemistry and biological effects of this species. Several types of chemical constituents considered as the characteristic and active constituents from LLF were isolated including 40 triterpenoids, 48 iridoids, 10 flavones, 10 phenylethanoid glycosides and others. Various extracts and individual compounds derived from this species have been found to possess a variety of pharmacological effects, e.g. anti-tumour, hepatoprotective, immune regulating, antioxidative and anti-ageing effects, anti-inflammation and reducing hypercholesterolaemia effects and so on. The results of data analysis on the chemical, pharmacological characteristics of LLF support the view that this species has many therapeutic properties and indicate its potential as an effective herbal remedy. Finally, some suggestions for further research on chemical and pharmacological properties are given in this review. Theoretical basis was given for further exploiting and utilising LLF.
KEYWORDS:
Ligustri Lucidi Fructus; biological effects; phytochemistry
PMID: 25244978 [PubMed - in process]

Good luck to your wife, though. I hope it works for her.

Ta

Juliet

[myoak]

Oleanolic Acid Controls Oxidative Stress to Protect Against Optic Nerve Degeneration in an Experimental Model of Multiple Sclerosis

http://onlinelibrary.ectrims-congres...4109/undefined

Background: Optic neuritis (ON) is a frequent and early symptom of multiple sclerosis (MS). ON is a condition involving inflammation, oxidative stress, demyelination, and axonal injury in the optic nerve and leads to apoptotic retinal ganglion cell (RGC) death, which contributes to the persistence of visual loss. Currently, ON has no effective treatment. Experimental autoimmune encephalomyelitis (EAE) is the animal model used to study MS and ON. The triterpene, oleanolic acid (OA), has proven effective in EAE via an immunomodulatory and antiinflammatory mechanism.

Objectives: Our goal was to determine the usefulness of OA in preventing ON with a focus on neuroprotection.

Conclusions: OA suppressed clinical and histopathologic signs of ON preventing recruitment of inflammatory cells to the optic nerve, ameliorating production/accumulation of ROS, and restraining myelin fiber injury. Therefore OA may be a therapeutic strategy for suppressing neurodegeneration in optic neuritis.

Juliet, TY for your response and kind thoughts.

The research published on the benefit of oleanolic acid is in EAE, the animal model of MS where the bulk of MS research begins. True, the mouse model has its shortcomings on several fronts. It’s an imperfect scenario in an imperfect world.

Another unfortunate reality is when there is no path to profitability off-patent drugs or unpatentable supplements seldom receive funding for study. Of course, large-scale human trials are necessary before FDA approval. And, anyone funding costly trials must be able to expect a return; trials lacking profit potential are virtually never done. Pharma are the only ones willing to spend a hundred million dollars, often more, and 15 years developing a treatment. Disease societies and the government are much, much less likely; history proves as much.

So based on effectiveness in animal studies, use as a traditional Chinese medicine for centuries, and considering its very good safety profile my wife believes oleanolic acid offers a reasonable chance of success. We will probably be long dead before anyone funds human trials to provide the standard for a more thorough evidence based decision. Understandably, she wants to be proactive in protecting her sight. Just put it out there for anyone interested. Not sure it qualifies as a tip, Juliet!


Best thoughts to everyone struggling with vision issues.

[AMFADVENTURES]

Mouse, just a quick thought. Have you ever tried to tie the Uhthoff's to heart rate while exercising? I mention it because I've noticed that above a certain heart rate for a certain length of time my neuromuscular function can take a huge hit almost right away. Sometimes short term recovery is possible but sometimes not until overnight. The hotter it is of course, the sooner this happens. It's something I'm starting to pay more attention to this year.

[Mouse]

myoak - Wow! Thank you for that. I was only looking at peer-reviewed pubs, so posters wouldn't come return as a result.

I've registered with the site & have been through the poster. It does indeed look convincing - especially the immunofluorescence images. If this was presented to congress late last year, maybe they'll have it published at the end of 2015. Hope so. I am intrigued!

I agree with you that the EAE mouse is a flawed model with limited translatability, and I despair that we are so attached to it. Have you seen http://journals.plos.org/plosone/art...l.pone.0079188. It's a more refined model limiting progression to the ON.

Yes, I also agree with you that the paradigm of the drug development pipeline needs to change - for all diseases & disorders, not just neurodegenerative. We have lost sight of the prize ('scuse the pun) - mind you, copy & paste that comment across much of our society, but that's a different discussion altogether!

However, Mrs myoak is a much braver woman than I am to put her trust in an unknown quantity. But I'm really interested now! How does she take it? Is it OA, or the plant itself? How is the OA extracted from the plant if it is at all?


Larry - It's not something I have paid attention too, but you may be right. I don't have a heart rate monitor, but I could give it a go 'manually' and see if there's a correlation. It's definitely worth a try anyway!

Thanks, both of you.

[myoak]

Mouse,
Obviously, anyone considering any supplement should invest enough time to discern whether the supplement is appropriate for self. I'm sure everyone already knows that; don't know why I feel better after saying it?!

I wouldn’t advocate taking glossy privet because everyone is unique but people have taken it for about a thousand years so I understand if someone may feel it could help them. My wife takes the fruit powder which contains much more than just oleanolic acid (OA). There is quite an array of chemicals in glossy privet.

Can OA be extracted from the fruit powder? Yes, but I know little more than doing so doesn’t seem difficult judging from its availability at Alibaba. OA appears online but I have never sourced it since my wife takes the fruit powder.

Amazon is one place you can find the fruit powder. There is so much info available. Google, “Chinese privet ligustrum lucidum fruit powder” for a bunch of articles and sources.

A bit more about neuroprotection… my Biotin post could have been better written. I wanted to downplay it because so many promising things in MS disappoint later on. However, this one may be different. Data on 150 patients will be presented at AAN late April and I suspect the Biotin trial may be of major interest to those with progressive MS.

Another item which might be of interest in progressive MS is:

Targeting ASIC1 in primary progressive multiple sclerosis: evidence of neuroprotection with amiloride
http://brain.oxfordjournals.org/cont.../1/106.long#T2

Also, those living in the UK may want to Google “MS-SMART Trial” if they might be interested in participating in a SPMS trial.

Thanks for the dialogue!

[Mouse]

Update:

The Better Half (BH) & I went out on the bikes yesterday, to tackle a short and very familiar trail in the Easter sunshine.

I didn't fall off! Well....not completely anyway...

I took Larry's advice & wore minimal clothing, and tried to keep hydrated & cool.

My vision in the ON eye (which is also my dominant eye) reduced to about 20% as soon as my heart rate increased, but it returned to about 80% after only a few minutes of rest in the shade & looooong drag on some cold water.

Uhthoff's definitely correlates with pedalling effort!

This means:

1. Uphills are half-blind - this is fine if I stick to trails that aren't too technical.

2. Downhills are Weeeeeeeeeee!!

3. Increased concentration means I have to stop to have a drink, instead of rehydrating in the saddle.

4. Flat technical sections are the tricksiest - especially in woodland under dappled light. Pedalling effort is required, which reduces vision & this is where I had trouble.

I couldn't tell if the ground was banking to the left or right, or if a patch of contrast was a hole or a hump, so shifting my weight over to one side to correct pushed me over when I chose the wrong side.

The words of the Ophthalmologist came back to me "Predators move their heads from side to side to judge the distance to their prey". I tried that & toppled over into a bush. Maybe my movements were too exaggerated?!

Nevermind, it was all at slow speed.

It was a very useful exercise in finding out what I am going to be able to cope with with changing vision & establishing my (current) limits.

Onwards & upwards! (With maybe a few rests in between....)

Thanks Chaps!

[Suebee]

Mouse. Thanks for updating us on your biking. I haven't jumped on my bike because of balance issues. I'm planning on using stationary until I can purchase racing trike?!? But your approach shows your spirit. Way to go.!!! bTW. My ophthalmologist gave me helpful advice for double vision - he said you can always close one eye. He must have trained at same place as yours. suebee

[cl3me]

ON and Mountain Biking

I am permanently monocular from a severe bout of ON in 2003, with my left eye I don't even make it on the eye chart, luckily my good eye is still perfect!

The switching from binary to mono vision must be distracting. I don't have that issue. It took some time but I have adapted to the lack of depth perception, and even better still enjoy some mountain biking. I even did a trip to the Rocky Mountains of British Colombia Canada and did some downhill.

To help adapt to mono vision this book has good tips:

"A Singular View: The Art of Seeing With One Eye" by Frank E. Brady

http://www.asingularview.com/singvie.../contents.html

I was able to get a loaner from local library.

Tips for riding - as already mentioned, stay cool. When I am overheating I like to dump water on the back of my neck from my water bottle (backpack bladder for drinking, water bottle for cooling).

Go for quality not quantity - I have to keep my single track riding shorter than I would like. Example, in Fernie, BC did a couple of downhill runs, but when I started to feel the weakness and eye fatigue, while my companions enjoyed a few more runs, I called it a day and sat on the patio and had a few brews.

Practice off road skills in a safe environment - make use of a skills park if you can. I can ride skinny's, bridges, drops still, jumping I struggle with timing so no go there. It will help hone vision and confidence. This advice was given to me by another cyclist with MS/vision issues.

Know limits. Sucks but that's the reality of MS. yet at same time you can do more than you think.

I tend to do more tame tracks now, go for the trails with nice views rather than the narly stuff. just glad I can still get out there and do it. Also do more recreational road riding, going to do local MS Bike again this year.

Karen

[myoak]

Just wanted to post this for those interested...

High doses of biotin in chronic progressive multiple sclerosis: A pilot study
http://www.msard-journal.com/article...006-1/fulltext
http://www.ncbi.nlm.nih.gov/pubmed/25787192

QUOTE "Biotin activates enzymes involved in energy production and myelin synthesis.
91.3% of SPMS or PPMS patients improved clinically with high doses of biotin.
• Improvement concerned chronic optic neuropathy, homonymous hemianopia or myelopathy.

In all cases improvement was delayed from 2 to 8 months following treatment׳s onset.

Two multi-centric double-blind placebo-controlled trials are currently underway." END QUOTE

[ActiveMSers]

Mouse, AMF is spot on when it comes to cycling tricks with ON. My wife Laura was my spotter when mine was bad (which limited mountain biking for safety reasons). She would just ride in front of me and I'd follow her back wheel. And she would announce oncoming traffic. Worked perfectly and kept me on the bike. She's awesome!