Does anyone have a side effect from CLS, that is somewhat similar to vertigo? Since I have been on IVIG, for 17 months, I have had no CLS symptoms. This new "symptom" makes me actually almost fall over because of this "vertigo" type symtom. It may not be from the CLS, so I am asking the group. Another effect is that when I step into the dark or turn the lights out, I become unstable to keep balanced when walking. It is simialr to spinning one self around and then trying to walk stright. This does not happen all the time. Walt

Hey Walt, I've never had that symptom.

The first time I passed out I thought it was a case of vertigo, but many days of hospitalization and surgeries later I learned that what I actually had experienced was my first episode of SCLS -- namely, I passed out because my blood pressure had collapsed due to a massive capillary leak. Now that you're not having episodes of SCLS anymore, it would be reasonable for you to pursue with your doctor other, non-SCLS-related reasons for what you are experiencing.

Hi Walt - I have had this "off balance" feeling for years -on and off and it seems to have increased in the last year. I have always assumed It had to do with very slight increases in edema in the brain or inflammation around the cranial nerves. It's always very subtle. BTW -finally saw you on TV a couple nights ago! You represented us with much dignity! Carole Thorn

Hello Walt. Jim gets vertigo and dizzy episodes once his IVIg treatments start to wear off (he doesn't do monthly treatments, and instead has IVIg as needed). For us, it's usually one of our first indicators that it's time to start monitoring his blood. However, he's never had vertigo related to turning the lights off as you describe. But as SCLS affects so many systems in our bodies, the complications and injuries can vary quite a bit from person to person (for example, Jim is the only one I've heard off who has been partialy blinded and deafened by an SCLS episode. He's also the only one I've heard of with extensive and crippling neuropathy in his back). I guess what I'm trying to say is...better safe than sorry.

Oh, and when I say Jim gets Vertigo, it's a bit more than simple dizziness. He says it's hard to explain, but he has these episodes where he feels "disconnected".

Liesa: You should know that what Jim's doctor is doing, namely, giving your husband IVIG on an "as needed" basis (once he develops symptoms of an episode of SCLS), is highly unusual and conforms to no medical evidence or existing therapy recommendation. I suggest you consult with other doctors there in Calgary with a view to getting him on a regular, monthly schedule of IVIG infusions -- and if you need some suggestions of doctors to see, let me know by writing to me at _aporzeca@american.edu_ As you wrote on your profile page, "It’s an exhausting way to live." Yes, and some might say it's also downright reckless.

Liesa I may know what Jim means by "disconnected". This is hard to discribe, so we all take our best shot. Beside the "weird" feeling that I call "like vertigo", my left eye loses focus. Both do not last very long. Does Jim feel like he will fall over or that things are not clear? I agree with Arturo to push the regular scheduled IVIG. It may take a lot of effort, but the result is very good. Being on IVIG is as normal as I can remember. Not sure if this works for all CLS, but I personally can not let up on exercise or being active. If I do, there are a lot of symptoms that start to surface. I really think that we all have to stay as active as it allows us. With all said, the IVIG is really amazing from what life has been like before the treatments. Thanks for the comment on the Discover channel show. It didn't come out like we thought. You do short segments with them and then you wait to see the whole thing. Walt

Hi Walt. He does at times experience blurry vision during these "episodes". Of course, he has lost a large amount of vision in one eye...and a bit of vision in the other eye (due to optic nerve damage during his first blood pressure drop). But these episodes feel unrelated to his existing vision problems. He does feel at times like he might fall over...but it doesn't quite feel like passing out (although he has done that too). He says it's more like a "surreal" feeling. Nothing around him feels real. He might be walking somewhere, but it feels like he's floating. He either feels disconnected from his body...or sometimes just from his hands or feet. He says it's just weird. If you would like to contact him directly, send me an e-mail to liesaevans@live.com, and I will be happy to put you both in contact. He has a profile here, but he doesn't participate much here. It's hard for him. Liesa

Hi Walt & all I am sorry to hear your now having new symptoms. I to also experience lightheadedness with spinning sentations, with the tendency to trip and falling onto things. I am also told by my family and friends that i become quite distant it's like am in the room but yet not quite their, kinda fluid like, with a lack of concentration level. The last time it happened was on the 23rd august I was at my sisters party when I felt it come on one of the guest happens to say to me your not driving home r u it felt like I had a large amount of alcohol in my system but I must of also been showing on the outside like I did to the people around me, I immediately drank at least 2 litters of fluid which did help improve my symptoms to a level where I could hold a brief conversation. I am on the Theophylline / Terbutaline treatment.

You might have positional vertigo... my doctor told me about this simple solution and it immediately stopped the problem for me. I have to do this a couple times a year. Very simple and very fast solution - and worth a try! Here is a link to a demonstration: http://www.youtube.com/watch?v=QikUTAmeE0M

Walt - I would describe the feeling I get as light headed or dizzy. However there are times when I have an extreme disconnected, surreal feeling.....as if I am walking on the moon. I have had episodes of some vertigo but not extreme. My thought is that it is related to low blood pressure, electrolyte imbalance, and dehydration. The last extreme episode I had was followed by flu symptoms, 102 fever, and intensified swelling that kept me in bed for several days. Keep in ming that I do not have a definitive diagnosis of SCLS. I am considered suspect at this point. Bev Keep in mind that I am

BBAMBER I went on the website and then tried the exercise. It seems that the vertigo symptoms have not been noticeable since. We walk everynight and I normally look like I stagger when walking. I haven't figured out what the exercise does, but it seems to be working. Thank you

Walt, I have noticed the same thing. Dizzness and a kind of mental fog. It is usually right before my treatments or when it is over 80 degrees. I "hide" from the heat. I had to delay my treatment by a week this time and really noticed it. Also I ended up with a migraine that lasted two days. I hope I can keep my treatment at the correct intervals, it is not worth feeling so bad just to make a work deadline. Rita

Rita - I delayed my infusion by a week once and had really bad results - severe migraine and flu-like symptoms for almost two weeks. Normally I don't have too much trouble. Carole

Walt, I am glad the exercise seems to have worked for you. I think it has something to do with particles floating in an ear tube they should not be in... When you move your head in this manner, it forces them to a place where they can no longer cause you to be dizzy. It was a quick cure for me, and I am glad it has worked for you too! (Don't you wish everything could be this easy!)

bbamber Thank you again, still no problem with the vertigo. So it looks like that might be it. I looked at the idea of the particles inside the tubes on each side. I thought it was comical that they sell a hat with tubes so you can get it right. Your websight is a lot easier and doesn't cost anything. Maybe the NIH or someone will come up with the CLS immunization. You never know. Did you ever need to do the exercise more often? The medical website noted that this was not rare and happens most commonly for people in their 50's. Walt

Walt, I have had to do it a couple of times within the same day to completely make it go away... but normally, once does the trick. It can come back in a week or two, and other times a year or two... it is totally random. Whenever I get the vertigo sensation, I just take a few minutes to remove the particles and I am good to go! I think positional vertigo is a pretty common problem, but surprisingly not many know of this easy fix. I am sooooo glad this worked for you!