Reflex Sympathetic Dystrophy (RSD)

[meglaser]

Good morning to all!

I have missed posting to everyone and yes I have another question! I have been in the seizure and epelpsy forums and asked my question a few times without an anwser so I will as my fellow RSD friends!
Has anyone ever suffered a seizure? I truly think when I passed out last year (approx 10 ti mes) I had seizures. A woman at work witnessed one. The one neuol I see tried to onset a seizure on me with 2 short tests, a 24 hour test and a 2 day testl The problem is - now I think I know what is triggering them. It seems that whem my harmones are crazy, I go through the sincapea and I will pass out and some times it will through me into a seizure So the docs just are not hitting at the right time,

I do plan on speaking to the new neuro about tis when I seem next,

I guess what I was just curious about and just figured I would ask if anyone ekse has experience this?
(Yes my nervous system is messed up!).

Thanks!

meg

[Bussey]

Hello Meg,

I have never thought about this, whenever I have read your posts about having seizures. I guess I would attribute that to the fact, that I was connecting your experiences to your exposure to the gas. However, I have been curious for a very long time, about what happens to me, at the onset of extreme flare ups, and sometimes even mild flares. For example, I can be extremely wide awake, when pain levels are down. I can be chatting on the telephone, watching television, etc. Then, when the pain hits, and I am in the clutches of a horrific flare up, right at the onset of the flare, I experience a woozy/dizzy feeling. Then, I can barely keep my eyes open, and I pass out, faint, or something! This has been ongoing for years. I have suffered from, and continue to suffer from, so many symptoms beyond the scope of the "normal" RSD symptoms. I don't remember if I questioned a doctor about this occurrence. I do know, that I ponder this event still, each time it happens. This may be entirely different from what you experience, but reading your question, brought this to mind.

Take good care of yourself. I hope to talk to you soon.

Bussey

[Truth Seeker]

Hello Meg and Bussey,

I could be wrong, yet I strongly suspect that the cause is called "Lead Poisoning".

In January of 1997, my RSD was in full swing already, it was at that time when my daughter and son- in-law purchased a large piece ( 5 acres) of prime property.
The property was outstanding, but my daughter felt that the inside of the house was to outdated, consequently they started to rip things apart.
Many family members lend a helping hand, all but me, I was not living, but barely making it from hour to hour.
No one around me could understand why a foot injury would cause me to have become so useless, but as we all know, RSD can be more invisible than visible.
My feelings of guilt for not being able to help, really did a number on me and that is when I decided to offer one hour per day to help out, which under normal circumstances would have been ridiculous.
The previous owners of this property had a wood burning stove in the family room, which was on when I arrived.
The very moment I walked into that warm (dry heat) house, I had trouble breathing and the smell of fresh paint was everywhere.
Within ten minutes, I had severe stomach pain, began to feel woozy and my already on hand dizziness doubled.
I could not stay, I had to leave, feeling even more guilty now.
As I was walking to my car, I noticed that my vision had become very blurry and I walked as if very intoxicated.
While I was driving, my vision got worse, my entire body began to feel heavy and lifeless, my concentration was badly affected, I should not have been in that car, but I needed to get home.
On my drive home, I had to pass the hospital, I could see it, but it appeared distorted.
Under normal conditions, I would have gone strait to the hospital, but it held by far to many bad memories for me as it relates to my original fracture/surgery etc.
By now my body had become so heavy, that the upper body was leaning on the steering wheel.
Finally, I arrived in my driveway, got out of the car and stumbled towards the front door.
When I enter my front door, I have 13 steps to my upper living quarters.
If, I have ever been delusional in my life, than it was at that moment, because the thirteen steps looked like an endless row and than I collapsed right onto the steps.
I could "not stand up" but I could not stay like this either, therefore I used my fingernails to claw into the carpet and pull myself up inch by inch.
I have no idea how long it took to get to the top, but my legs were just dragging behind and when I finally reached the top, I continued to drag myself this way into my bedroom.
To get into my bed, I had to hang onto sheets to pull myself up and than I passed out.
I remember laying on my stomach when I woke up and all of a sudden my body began to convulse, it happened so fast, that I did not even know what hit me and than I passed out again.
In hindsight, I think of this convulsion in terms of my body doing the "wave" because that is exactly what it felt like, before it went flat again.

A few years later, I had a similar incident, but this time it was do to a floor cleaner, whom I had asked to come and clean the carpets at my work place.
He was using an aerosol spray on a large stain, he sprayed and sprayed.
The chemicals must have become airborne and I inhaled them, because my reaction was similar to the first incident, nausea, dizziness, head ache, delusion, eventually passing out.
This time, I actually went to see my doctor, who brushed it off as nothing, yet send me for a blood test anyway, which showed nothing.

Between my surgery, RSD and everything else, my opinion about doctors could not possibly fall any lower than it already is.

Truth Seeker

[Bussey]

Hello Truth Seeker,

Like you, I have very strong and adverse reactions, to many of the products that you mentioned in your post. I cannot tolerate the smell of fresh paint, I am allergic to dust, dust mites, to dogs, and extremely allergic to sawdust!!! I believe there are a few other allergens, as well. However, whenever I come into contact with any of those allergens, my lung function is greatly diminished, and I usually end up on a nebulizer! I have asthma. I become extremely weak, but never woozy or dizzy. After getting a breathing treatment, I feel much better. Sometimes it takes two breathing treatments. I never passed out or felt faint, and I don't get sick to my stomach.

On the other hand, at the onset of a flare, I begin to feel woozy and dizzy, and I do eventually pass out, faint, go into an extremely deep sleep, or something. At that time, it usually feels as if my entire nervous system is shutting down on me. I literally become totally dysfunctional, or, extremely close to it. This never happened to me before, until after being diagnosed with RSD, and at the onset of a flare up.

I know that our immune systems are compromised, as a result of suffering from RSD, however, the two episodes affect me differently.

Take care.

Bussey

[Truth Seeker]

Hi Bussey,

It is always a pleasure to connect with you again.

As it relates to allergies, I really did not have any to speak of or to be concerned about, consequently my adverse reactions came out of the blue.
I realise of course, that allergies can come and go, but this was to extreme for me.

The only allergies I had been aware of "prior to RSD", were Penicillin, Kiwi fruit and certain metals.
Not being able to take Penicillin has never been a problem, because there are other medical substitudes.
The very first time I ate Kiwi fruit my throat began to close, I drove myself to the hospital where I received a shot and while I was waiting for the shot to take affect, the doctor on call and I, had a great conversation, in fact, he asked if he could have all of the other Kiwis I had brought along, because he really enjoyed eating that fruit.
These are memories of the good old days, where we showed mutual respect for each other. After all of these years, it is still difficult for me to wrap my head around what happened, because prior to the day I entered that hospital, my level of communication with any doctor was well above average, meaning, we got along great.

My metal allergies are another story indeed.
I cannot wear any "silver colored metal" in my ears, on my fingers or around my neck, without having a negative reaction and than they placed silver colored pins in my bone.....
It was not until I had my vision changes, that I became aware of how these metals are linked to the creation of mankind.

May God help us all.

Truth Seeker

[meglaser]

Thank you so much for your response!! Now I have been passing out from sincape once a month, however it is not the same thing that I experienced fofr the last two years. I just never had anyone witness it until last year. The neurologist ran so many tests to bring on a seizure with no luck and chalked it up to be the sincapea (blood preasure bottoms out when I stand up). When I went throuh the episodes I could actually feel my body shake as well. The Neurologist chalked that one up to be caused by the muscles and nerves. I too am trying to stay away from the hospital after last year (22 days is entirely too much)

I hope that you never have to go through that again!!Keep in tou ch!!

Mary Ellen

[lumix1972]

i'm new to this forum and i'm happy to be.

please check into mercury toxicity if you have amalgam filling in your teeth. this amalgam filling is 50% mercury and it is poisening our bodies. i thought that i had rsd which my doctor diagnosed with when infact i was slowing being poisen my amalgam filling in my teeth. please research mercury toxicity if anyone have amalgam filling.

thank you, may God riches blessing be upon you.

[meglaser]

Truthseeker - here here, I am so tired of everyone saying you od'd now I have no pain meds and cannot cope. I just got my first denial for disability, but now I have a new thing to add to the list. My ear is so bad - see my posting - and the fainting spells are bad. I failed two of my masters class (the same class) However I am an A-B and occasionally C student. I am retraining the brain but it is taking time - at least I now enrolled in disability services with the college to give me the extra time because as you know there are days you cannot get out of bed. This disease seems to be spreading everywhere. My elbow is still not totally healed/nerve damage - he arm has RSD in it anyway. Now this is 5-6 months and when I am bad you cannot touch it. I am sorry to rattle on.

I found your post to be extremely interesting and correlates to everything I experienced in the last year and still am but at a lesser extent. My goal is to stay out of the hospital!!

Take care

[mersilkee]

Yes I have RSD and I have had seizures before. I had a few episodes of passing out but many of my seizures were atypical. I was diagnosed with seizure activity by an EEG but none of the neurologists I see could explain my seizure activity. I have done much research on RSD and read many posts plus I have a sharp doctor. I think in the future that RSD is much more complicated than a "pain disorder."

I was recently diagnosed with a degenerative brain disease but that still doesn't explain my seizure activity because people with FTD which is what I have don't usually have seizures.

I was already on Keppra (anti-seizure med) for pain and my neurologist increased my dosage and it seemed to have helped.