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Question for ernie and Morgan


dizzygirl
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Hi ernie and morgan.. and anybody else who might be able to chime in on this...

But I am wondering.. has a dco given an indication what might be casuing you paralysis during syncope? and how long does your paralysis typically last?

I know that the past few paralysis invilved syncope's that i have had last an hour or more... last one lasted from start to finsih roughly an 1 1/2 hrs.. and i must say that my muscles and body hurt so badly! my wrists and ankles feel as though I have sprained them or something.. PT thinks that they fele that way.. b/c my arms and legs were contorted for so long.. and the twitching during the paralysis..really uh..put some stress on things..

I am ahving little paralysis episodes (espcially yesterday) that last a few minutes then go away.. and i am so tired tht I fall right back to sleep and that vicious cycle went on for about 8-9 hours...

just looking for some input I guess.. and reassurance that I'm not loosing my mind...I go see my doc this afternoon.. hoping that I can get somehwere with that..

Oh yes.. my paralysis epsiodes are happening while I am allready laying down.. one i had befor would happen after standing then dropping tot he floor.. and then i would have paralysis.. now it hapening while laying down.. I just dont get it and it is so scary to be aware of what is happening to you.. and have not be able to talk or move.. and to be jumping around like a fish out of water..

amajorlyhurtindizzygirl

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Hey there, I have periodic paralysis. It's caused by low potassium. I don't eat any carbs, or very few and take potassium pills prescribed by my doctor. If you google periodic paralysis, a bunch of stuff will come and you can see if you fit. morgan P.S. My paralysis can last up to about 1/2 hour, but that is a very long one, but I feel horrible for a very long time afterwards, with muscle cramping and twitches and tremors.

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Hi,

I frequently get paralysis. I hate it. I know its coming when it feels like there are a thousand bees buzzing in my head. I did some research on this and found tht a liquid mag and calcium supplement helps. Remember the nursing school anatomy clases where the calcium and sodium cross over to make a muscle contraction? This is an autonomic function.

I also found, with the help of my doc that lexapro for seritonin and wellbutrin for norepi helps (takes a few months and the adjustment to the med is rough, hard to not give up and stop taking them) These antidepressants I am on are not for depression but to help with nerve function.

I have been in bed for over 18 hours with the cycle of paralysis and sleep. Then felt really out of it for days. I had a seizure work up and even had several episoded while on the 24 hr eeg and they were not seizures.

In my case,I found, during the seizure work up, my pulse pressure narroed quite a bit right before the paralysis set in.

The meds helped me greatly but I still get the paralysis bu not as fequently or as long.

Hope this helps

Janine

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Hi,

My running diagnosis so far is periodic paralysis. I am seeing my endocrinologist next week and hopefully he will confirm it.

Usually I paralyse for about 5-10 minutes. It starts 5 seconds before fainting and then goes on after I wake up. I can't move anything nor talk. It's scary to be so vulnerable.

I have paralysed x2 at NIH when I was lying down. ON both occasions it was because I was fasting for a test. I paralyse at home lying down too but Dr Goldstein was surprised when he saw me paralyse flat. The longest I have been paralyzed was over an hour when I did a TTT at NIH. The second longest was at University when it lasted over 45 minutes.

I also paralyse while I sleep but I don't know if it's the same disorder. I need to eat before going to bed to avoid paralysing in my sleep.

I am still under investigation for the paralysis problem.

When I am paralysed I have cramps from head to toe for about 30 seconds and then no muscle tone for 50-10 minutes. My muscles burn like fire and they sore as if I had hit a brick wall. The pain usually last up to 3 days.

Hope we find the answer soon!

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Hi thank you gals so much for your input..

ernie..yeah can relate to the burning muscles.. especiall in my arms and shoulders.. eeww that is a horrible feeling,,, and I am still recovering from the bad epsiode fron saturday.. and its thursday!.. BIG OUCHIES! my bones hurt but good.. and my muscles geez they hurt..both of my wrisrs and my ankle feel like I sprained them.. and fatigue is unreal!

jannieern--I have had several EEG's done (some from this oast summer).. the eeg tech who did my test.. has done it a few times before and he always tells me that I have an interesting interpetation.. the eeg shows no seizure activity.. but does show that my brain functioning/activity is slowing down.. go figure they dont know why..I will look into the mag and calcium..

morgan.. hmm you are making me think! LOL..low potassium makes alot of sense for me.. ove the yrs. during bad spells..(bad syncope spells&HR over 190 and higher) my potassium would always come back low and I would have to take potassium pills for a while to get things back to par.. and thenit would "disappear again" and back on potassium I would go.. so I am going to look into that as well..

and I am going to look up periodic paralysis as well..

thanks for the support and input!

much appreciated!! :)

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Guest Julia59

Linda,

I'm sorry your having more trouble---please let us know what the Docs said.

I hope you can find a resolution to this scary paralysis.

Did they explain why the brain function is slowing?

Hang in there,

HUGS,

Julie :0)

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nope julie they have not.. remebr that MRI we talked about ( the one that I cant get the films of!!). well after the eeg's kept coming abck like that they did an MRI.. that one showed the cycst on the pitutary and pineal glands.. and nobdy will follow up on it! I would think that considering the mutlitude of things going on.. tha they would follow thru on it..theywere suppose to repaet the MRI of the brain and gland in 6 months at the latest.. and it has beenalmost 10 months..

Think its time to call Dr. Heffez? i think so..

but I posted about my doc trip on an other tread. (meltdwon at the docs).. I kinda hope that I made sense.. i cant think very clearly today.. apologize for any talking in cirlces and such..

but I hope too that they figure things out as well.. thanks julie!

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Janine, when I had a 24 hour eeg, they never even bothered to check my vitals. But my history in a previous stay was that my bp and pulse would just soar when I had them. And my K+ is always low.

That's when the neuro said all I had was a whopping case of conversion disorder and psychogenic illnesses. Even though it didn't show seizures, it did show too much beta activity. But that didn't count. This is why I am so heart broken for Hayley. All this guy did was check for seizures and decided everything was psych based because I didn't have them.

When I told him that neither my therapist or the psychiatrist that consulted felt I had this, he said they were wrong, he was right.

Well, I still get very weak, but I never miss my meds and boy do I adhere to my diet! And he's a cretin. :) morgan

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Linda,

I hope they figure out what is going on....what ever it is it doesn't sound too good :) .

Jacquie

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Morgan what a DARN (insert your own word here______) fool that doc is.. I'm so sorry that you went thru that..

tks jacquie.. i hope so too

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sorry to keep chattering about this...I had another one of those freaky spells this afternnoon.. and OMG! i can barely move my neck to the left.. so much pain going on.. and everything hurts badly.. so does my freakin'head..I feel like my body's insides as well as outsides are about to burn to a crisp... and that Darn bee stinging feeling.. and numb feeling wont go away in my shoulder..

UGH i think its time to call the doc and home nurse..this is so beyond scary..

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