Dear all,

Here my little introduction and questions to you!

1. What brings you here?
A very good friend of mine brings me here, gravelbed, also registered on this forum. I sent him the link of this forum to him a few months ago and he arrived to register on this forum but as he has severe vertigo, headache, fatigue and low-energy due to SPD, especially due to light sensitivity, he has a hard time staying long behind a computer or just during the day. Times are hard for him lately and I am posting this message just to hear what treatments other people with SPD follow. Gravelbed is using topiramate 100mg and also uses xanax to relax, especially when there is heavy vertigo due to light sensitivity what creates anxiety. Also he follows a vitamin treatment based on blood analysis. But still no serious improvement occurs, and that already since 5 years. Living with vertigo induced by light sensitivity has been very hard and is still hard because we are living in light the whole day. Mainly only the darkness and sleep seems to bring rest in his head.

2. What is your relations to someone with SPD? Do you have it? a child of yours? Do you treat SPD kids as a professional?
So gravelbed is a colleague of mine at work. And he is very good in what he does but he has difficulty keeping up at work due to his SPD.

3. Share a little of your journey if you'd like.
I'm just trying to support him as life is not easy and I was hoping maybe via this forum some other help could be found or maybe sending him an encouraging message might let him find other people that have the same problems.

4. Is there any immediate help you need?
Yes, any possible treatments that people with the above problems followed, life is hard for gravelbed at this moment.

5. SPD doesn't run your life! What are you or your child's gifts? Interests?
Gravelbed does photography and plays in a band, he is very creative and tries to get it out like that.

6. What do you like to do in your spare time? Any hobbies or interests?
Like doing photo and reading. And helping out a friend!

So I ask your help to react on this message just to see how people with the same symptoms try to live, and what treatments they follow and what was the result of those treatments. Maybe there exists someone on this forum that also have vertigo, headache, fatigue and low-energy due to light sensitivity (SPD) and maybe you found a treatment that works. Life is hard when solutions are scarce or the existing treatment followed seems to work not as hoped for. Karamel thanks you for your reactions on behalf of gravelbed!

Has Gravelbed tried tinted lenses?

I don't get vertigo from light sensitivity, but I do get migraines, and my tinted lenses have been amazing for my light sensitivity. It doesn't get rid of it entirely, but it does reduce it and make it a lot more manageable compared to how it is before. It just, on the downside, makes it even harder to be around some types of lights without them than before I had them.

(Light sensitivity leads to things like headaches, reduction of ability to function seen in immediate reduction of ability to communicate around certain types of light, and things like that for me, we've not seen a light connection to my vertigo though)

Hi all,

Thanks to my dearest friend Karamel for having posted the first mail about my problem...good to get people like this beside you when times are hard.

And second thanks to Tuttleturtle for your reply! I'm wearing sunglasses the whole day, if you have other solution to propose than just regular sunglasses, please feel free to share. Many thanks.

Just to get you a bit more of information on my current status, I've been diagnosed 3 month ago with hypersensitivity of CNS and hypersensitivity of vestibular system (caloric test for ear give result of 108°/sec although should be lower than 80°/sec for someone with normal vestibular system according to neuro).
This gives me the feeling to be 24hours a day on a boat, dizziness, headache, the floor is not stable (this is not spinning vertigo) and to help on fixing this, the neuro put me on Topiramate (Topamax) to decrease excitability of neurons. Am now on 125mg, it helps a bit, can't deny, but neuro told me we need to find correct dose and we need time for that, could be couple of months or so. So I am increasing the dose step by step of 25 mg every 4 or 5 week to let my body getting used to it.
Due to that, am also sensible to light of course, that's why I'm wearing sunglasses and computer is a nightmare....seriously...and I have to work 8 hours a day behind a screen, so not that easy everyday.
But I keep on working because work gives me the balance in my life that CNS is not able to give me anymore... I need to wake up everyday and do something, and have responsibility and to think to something else.

Well, if anyone else have similar problems, feel free to share your ideas, suggestions, thoughts. ...and anyway, good luck to all of you!

Best regards from cold Belgium! ;-)
Gravelbed

Instead of regular sunglasses what I wear are tinted lenses; ones that are colored a color. So for example, my lenses are blue, because my blue lenses reduce my light sensitivity.

http://img.photobucket.com/albums/v196/t...c5ef1a.jpg are my tinted lenses to show you what I mean.

Instead of just reducing the amount of light coming in this is saying "the color affects me too" and changing the color makes it easier on me.

So, one thing you could do on the color idea is to see if its easier to look at the computer with different background colors. It might help. It might not. If colors help that'd be great because something that helps is great.

There's a bunch on color based things on http://irlen.com/

---

My vertigo is also the floor is not stable primarily, though my vertigo is associated with hearing, not sight. It's not nearly as severe as yours. The fact that topamax is helpful is great! It's one of the medications I'm taking for my migraines so it might be helping my vertigo too. There are multiple things I deal with I found out after its helpful for beyond my migraines, which is why I'm on it.


So, this is an area I'm less good at but some immediate suggestions:

-Again reducing light coming in. Do you know how horses have blinders so they can't see peripheral vision? Put blinders like that on your glasses/tinted lenses/sunglasses. I've found that the worse light sensitivity is frequently, though not always, for me associated with my peripheral vision and if I cut that out I can increase the amount of time before symptoms show up.

-Reduce the amount of salt you eat. Vertigo is frequently worse with higher salt diets.

-Any other sensory sensitivities you have, deal on them too, make sure to get them dealt with, not just this vision one. It's easy to get tied up in the one that's worst, but if you only look at the one that's worst, the other ones make your body less able to cope with that one. I have been really bad with this one in the past.

-Check different types of computer screens to see if some are easier than others. An LED backlit screen might be easier than a standard LCD. It also might not be. Look at them and see how you feel, different people are different.

-Lighting in the office. Manage this. How do you react to florescent lights? Most of us with light sensitivities HATE them, if you do, deal with that and see if you can get alternate lighting if that's what you have. Sometimes that's the worst for people and getting rid of that solves most of their problems.

-And simply, find ways to deal with the vertigo that's there. I carry a folding cane for when I need it. It helps with making it less tiring to walk even though I don't need it always that I use it. Sometimes I need it, usually when I use it I could get away without it, but this way I don't need to put the effort in there, and can put it in other places. I suspect you've done a lot here, but don't undervalue it. Dealing with symptoms and making them less exhausting is sometimes what to do.

Oh, and one more possible area to look into if you feel its the right way:
-Looking into things that mean you can do things with your eyes closed if that helps so as to not deal with the light attacking you.

If you want help with that last one I can help with things like finding screen readers or such, depending on what you feel you need.

Thanks for your reply.

Indeed, I have already tried out a couple of different things and am currently working in my office with no fluorescent light (neon). They are all off.
Am trying also to educate people to stop disturbing me for all and noting, sometimes have the feeling that my office is New-York Central station and since I'm also sensible to noise that is hard to manage....i have to reduce stimulus in fact that reach my CNS and need calm, space, avoid heavy light.

I just received yesterday new glasses from Prisma-Lite that helps on eliminating blue light from LED flat screen such as TV and computer monitor.
I will give it a try and see if it helps out, at least even a bit of relief is anyway most than welcome.

Thanks for the tip about salt, never heard of it, so I will pay attention now.

I have another appointment with Neuro soon and we will see what's next...well, I think i know what: "You must patient Mister".
You have to know that I've been diagnosed 3 month ago but am fighting since 5 years against dizziness so for the doctors it seems like something new but for me it's already a long fight.

The real problem also is the anxiety link to the symptom. It's chicken and eggs problem! Instability makes me feel like I'm going to faint and then my CNS is reacting like facing to a danger, thus my stress goes up and then my vertigo goes up too and here is how start the loop!...This makes me feel anxious most part of the day. So agree when people say, that's the stress making you feel this way. They are not wrong...Stress have an effect on me since I have a CNS disorder. But positive emotion is also creating same behavior. So...Well, endless discussion.

I don't know if you have to manage anxiety issue with your vertigo or dizziness but for me that's also part of the problem.
Learn to live with it for me, it's the most difficult.

Gravelbed,






Regards,
Gravelbed,

For dealing with the anxiety, I think part of it is finding ways to work around it while finding solutions. Saying "this is going to happen so how to I prevent myself from having problems because of it"

I don't have good suggestions off the top of my head for that; but I think its an important place to focus to deal with the anxiety. Others might have ideas.