Scary event a few days ago linked to full body RSD
 

Hi, everybody:

On Saturday, September 10, 2011, I was walking in a supermarket to do some shopping. All of a sudden, I clearly felt the strength leaving both my legs. My knees were starting to buckle while the noise around me was dimmed. Fortunately, this lasted only about a minute and I was then able to continue walking normally, with the leg weakness gone and the sounds around me normal again.

What could it have been? A stroke? My father is prone to strokes, but he does not have RSD.

Could this strange and scary event be linked to RSD?

Thanks for your information.

Sounds like you almost fainted? What meds are you taking, water intake, heat etc.

I would say either ur bp dropped or ur sugar. I have had this several times and I'm not sure. Except to say this is the first things doctors will look at.

Hi, Jimking:

I am not sure if I almost fainted or not. I do not know if the legs weakness, the knees almost buckling, and the dim noise are linked to fainting. I never fainted before, except when I had a seizure (I have epilepsy).

The medications I am using are:
-Duragesic (fentanyl) 125 mcg: one 100 mcg patch and one 25 mcg patch every 72 hours,
-MSIR (morphine sulfate immediate release) 30 mg: one capsule once or twice daily, as needed,
-Tambocor (flecaïnide sustained release) 200 mg: one capsule daily,
-Inderal (propranolol) 40 mg: one tablet twice daily,
-Keppra (levetiracetam) 500 mg: two tablets twice daily,
-Klonopin (clonazepam) 2 mg: one tablet once daily, at bed time, and
-Tylenol (acetaminophen) 1,000 mg: one tablet once to three times daily, as needed.

I do not drink much water because I am rarely thirsty and because I do not enjoy looking for a restroom everywhere (that afternoon, I was out, enjoying nature while riding in a friend's car). Only afterwards did I go to the supermarket.

There were times when it was hot during the car ride, but I was not hot in the air conditioned supermarket.

Thanks for your answer.

Hi, alt1268:

I do not know if my blood pressure dropped because, when I got out of the car in the underground parking lot and while I was walking in the supermarket, I was fine. I was not dizzy at all.

I do not know if my suger dropped either. If I had the small device all diabetics use to test their blood sugar level, I could have found out about it.

Quote: "I have had this several times and I'm not sure." Has any of your doctors ever told you if it could be linked to RSD? My RSD is full body, external and partly internal.

Quote: "Except to say this is the first things doctors will look at." How can the doctor find out what happened if things are normal when I go see him? (No legs weakness, no knees buckling, no dim noisees during this medical consultation).

Thanks for your information.

When you posted this earlier, it reminded me of something that happened to me, but at the time I could not remember the name of the medication I was trying at the time.

After reading your latest post, I remember that the medication was Klonapin.
I was in WalMart. I had this odd sensation and I thought I might fall - I grabbed the shelving unit. (I didn't have a cart with me.) The lighting was bright in the store, but it slowly, over maybe 15 seconds, dimmed way down, like it was a brown out or something. It didn't get all the way dark, but like twilight. I looked around, but no one else seemed to notice. The sensation passed, and gradually the lights came back up. A few minutes later, it happened again. I was standing near a woman, and I must have looked funny. She asked "are you ok?" and I said - this is going to sound funny, but is there an electrical problem in the store? Are the lights doing something funny? She said no, everything is fine... I said, ok, then it must be me.... I went out to my car, sat for a while. Called the doctor. Didn't know if I should drive. Doctor said it was probably the Klonapin, discontinue it. She thought I would be ok to drive home. It didn't happen again.

I wonder if what happened to you was similar, except it effected your hearing instead of vision? It sounds so similar to what happened to me - my vision dimmed, your hearing dimmed. I felt like I would fall and so did you. Etc.

I was only on the medication a couple weeks when it happened. Can't remember exactly. I think I started on smaller dose and was working up.

I tell you, it was one of the strangest things I have experienced. All the lights going dim, but no one else noticing. I thought for sure I was having a stroke or something major. :eek:

I have had this happen to me on several occasions. It occurs sometimes when i am just sitting and resting. It lasts for hours. My pulse is fast, I feel cold, I feel nauseated, sense of doom. Very frightening. I am not on meds as I am very sensitive to them. I try to drink more water to rule out dehydration and eat a bit in case it's low blood sugar which does not make me feel better.




QUOTE=daylilyfan;805268]When you posted this earlier, it reminded me of something that happened to me, but at the time I could not remember the name of the medication I was trying at the time.

After reading your latest post, I remember that the medication was Klonapin.
I was in WalMart. I had this odd sensation and I thought I might fall - I grabbed the shelving unit. (I didn't have a cart with me.) The lighting was bright in the store, but it slowly, over maybe 15 seconds, dimmed way down, like it was a brown out or something. It didn't get all the way dark, but like twilight. I looked around, but no one else seemed to notice. The sensation passed, and gradually the lights came back up. A few minutes later, it happened again. I was standing near a woman, and I must have looked funny. She asked "are you ok?" and I said - this is going to sound funny, but is there an electrical problem in the store? Are the lights doing something funny? She said no, everything is fine... I said, ok, then it must be me.... I went out to my car, sat for a while. Called the doctor. Didn't know if I should drive. Doctor said it was probably the Klonapin, discontinue it. She thought I would be ok to drive home. It didn't happen again.

I wonder if what happened to you was similar, except it effected your hearing instead of vision? It sounds so similar to what happened to me - my vision dimmed, your hearing dimmed. I felt like I would fall and so did you. Etc.

I was only on the medication a couple weeks when it happened. Can't remember exactly. I think I started on smaller dose and was working up.

I tell you, it was one of the strangest things I have experienced. All the lights going dim, but no one else noticing. I thought for sure I was having a stroke or something major. :eek:[/QUOTE]

Kitty,
The same thing happened to me recently. I was walking into PT with the aid of my cane and a helper and I fell because my leg gave out out. I have balance issues too.
Now I'm using my wheelchair for safety. The neurologist relates this with my RSD spreading to my leg.
Be careful and stay aware that this can happen again without notice...

I get the buckling and about to fall sensations a lot. It is so painful to push down that I don't use a cane or walker - I now use a service dog.

I was picking up on the OP's comment "while the noise around me was dimmed"

That sounded so much like what happened to me except it was the lights that dimmed. After stopping the Klonapin, it never happened again. I thought I would mention it since she listed Klonapin.

It is known to have very odd side effects - visual disturbances, hallucinations, etc - I didn't see anything about disturbing hearing, but I don't know what the medical term for that would be, so it may be there, and I am not seeing it. It is also known for coordination issues.

Just a thought....

Hi, daylilyfan:

Quote: "A few minutes later, it happened again." To me, the legs weakness, the knees buckling, and the dimmed noise only happened once in the supermarket. It has not happened again since that time. It was the first time this event happened to me, if you do not count my seizures from epilepsy.

I have been taking my Klonopin tablets for years at the same dosage: one 2 mg tablet once daily at bedtime. I have never had any problems with it. I just wonder if the problems you and I had could happen even after weeks, months, or years of use. Besides that, 2 mg does not seem to be a high dosage to me but then, I am not a doctor. BTW, I use my Klonopin with Keppra (levetiracetam)to control my epilepsy.

I wonder also if our problem could be caused by orthostatic hypotension.

How many Klonopin tablets were you taking and in what dosage?

Quote: "I thought for sure I was having a stroke or something major." When my father had a stroke, it was because a blood clot in one of his legs had moved into his brain; this caused a stroke. First, his legs buckled, then he passed out. I do not know if he had a dimmed hearing or vision.

After reading all the posts I guess a good question will be, kittycapucine, what meds have you just started taking?

Although I don't have RSD, the wife does, I've experienced something similar. When I first started taking my mild blood pressure med there where 2-3 times I thought I was about to drop out, but didn't.

Hi, Jimbo:

Quote: "The neurologist relates this with my RSD spreading to my leg." Where was your RSD before it spread to your legs? My RSD was in my left knee. My RSD then spread all the way down to the tip of my left toes and all the way up to the middle of my left thigh. Some years later, my RSD spread along my spinal cord all the way up to my brain. Afterwards, my RSD spread to my right leg and to both my arms, before becoming full body RSD.

This problem, in your case and maybe in my case, being linked to RSD, could be what is called a "movement disorder" of RSD.

Quote: "Be careful and stay aware that this can happen again without notice..." You are right. I do not want to fall down with my two-year-old baby boy in my arms, I do not want to fall down the stairs or elsewhere and die because my head hit something hard and sharp, and I do not want to fall down on the street to be hit by a car, etc. However, I do not know if such events can be prevented.

Thanks for your help.

Kitty,
Luckily for me after my first encounter with not being able to do stairs WC put in a stair lift for me because the only way out of my house is going down stairs. They have also provided me with a wheelchair.
My RSD started in my left wrist and forearm after a surgery. I also have degenerative cerebral atrophy which compounds the problem. The RSD spread up my arm, shoulder, neck and face. Then my left leg became very weak with burning pins and a falling asleep sort of feeling but with pain. The RSD effects my central nervous system which runs along the spine at the cerebral area of the brain. Now I'm getting more frequently uncontrollable convulsion shakes which started after my accident...