While We're On The Subject Of Neurological Symptoms....

[ljoeb]

I got a call from the Vanderbilt Clinic and actually have an appt. on Aug. 28th with a neuro doc there. They are sending me all the paperwork.... I'm still trying to get in with a neurophysiologist here in the Dallas area, so we'll see if a trip to Nashville will realllyyyy be needed.

My orthostatic intolerance has been under control for the most part with florinef, sodium/fluid loading and rest, but I have been "inundated" with new neurological problems over the last few months. I shared earlier that I feel like I have a sunburn from the top of my head to the bottom of my feet! At times I feel like I am on fire, especially in my thighs, ankles and top of my feet. I am taking Lyrica and it "cools" it down some. I am about to bump up to 150mg a day so we'll see how that goes.

I also have "herkiy/jerky" moments where it feels like my body is just out of control and does what it wants to do. When I am in that mode, I have to literally tell my legs to walk and have to force my hands in my pockets (if I don't, my arms will "flail and flop around" like a monkey) and "think" through the whole process of walking and movement. My whole body just kind of shakes like I have been chilled, even thogh I'm not cold. That type of symptom comes and goes (and has for several months), but it is much more pronounced now and much more frequent and is starting to last longer and longer.. sheeeshh!!

Anybody else experiencing this? Any ideas on what it may be??

Thanks!! Joe

[gertie]

I have times when I shake so hard my teeth chatters but I feel cold. I also have times I am very hot & sweat drips and times my legs & feet are so hot I can't stand a sheet to touch them. Sometimes my legs will jerk when I lay down at night but so far haven't had a problem walking. It seems to go from one extreme to the next.

Let us know if you get an app't with neurophysiologist in Dallas & how it turns out.

[delphicdragon]

I get what I've termed to be seizures. They're not seizures as I know what is happening when I have them, but I can't move and my body just shakes. If I try to prevent these seizures, they usually get worse, so usually it's better for me to just have them and then, after about 10 mins I'm good. They tend to happen when I'm stressed and I think it's a neurological reaction to too much adrenaline. My BP also bottoms out during them (EMTs couldn't get a reading).

I'm not sure if that's what you're experiencing but I hope you get better soon or at least the Doctors have some answers.

Sara

[pat57]

Sara,

I want you to know that I have seizures due to low BP- like you have said. I thought I was conscience because I am aware that there is movement but my memory is of- say 5 seconds. The events -people tell me are about 2 minutes. I have also seized (quick body jerks) and passed out during my all 4 TTT. Each time I grayed out and knew I was going but thought I recovered as soon as I was supine. I did not know I was out or seized.

Anyway ,to everyone who thinks they remember seizures or any event that includes collapsing to floor, I doubt it.

[jbrian00]

I have times when I shake so hard my teeth chatters but I feel cold. I also have times I am very hot & sweat drips and times my legs & feet are so hot I can't stand a sheet to touch them. Sometimes my legs will jerk when I lay down at night but so far haven't had a problem walking. It seems to go from one extreme to the next.

Let us know if you get an app't with neurophysiologist in Dallas & how it turns out.

My toes will be cold to the touch but they will be sweaty as can be. I wonder why.

[ajw4790]

Hi,

I don't really know much about or have any experience with most of what you described. It does not sound fun! I do every once and a while have unintentional jerky movements of my arms or hands etc. Where they just move unintentionally while I am at rest. Not sure why, could be part of the essential tremor and everything for me.

I really am not sure, because I am not a dr. or anything, but I think others have described some of what you have described before, and it being related to Periodic Paralysis or issues with hypo/hyperkalemia. I don't know if this is any help in your case, but maybe something to look at.

I hope you find a dr. that can help!

[delphicdragon]

pat57-

I'm not sure what's going on with me. My memory is definitely shortened during this period and the twitches are violent (twitched my boyfriend off the couch the other night). I saw a neurologist about this and he refused to put me on any medication for it because it was atypical and hadn't been caught on an EEG (had a 24 hour monitor and that was normal). I don't want to go back to a neurologist because in my state if you've had a seizure you can't drive for 6 months and you are required to be medicated for the rest of your life. Maybe I should pay attention to it a little more. They tended to happen lying down, so I assumed it wasn't the POTS, but it may be that I sense them coming and therefore lie down. Not sure. What do you think? Anyone? Bueller?

Sara

Sara,

I want you to know that I have seizures due to low BP- like you have said. I thought I was conscience because I am aware that there is movement but my memory is of- say 5 seconds. The events -people tell me are about 2 minutes. I have also seized (quick body jerks) and passed out during my all 4 TTT. Each time I grayed out and knew I was going but thought I recovered as soon as I was supine. I did not know I was out or seized.

Anyway ,to everyone who thinks they remember seizures or any event that includes collapsing to floor, I doubt it.

[HoudiniCat]

Yes, I?ve experienced this too. The ?sunburn? feeling was one of my first major symptoms ? a burning, red hot sunburn on my face, neck, back, chest, thighs. The only things that seemed to give me any relief were to put cold cloths all over the burning areas or to take a cool bath.

The twitches and tremors came later. My body shook all over like I was freezing, teeth chattering and everything, although I?m not cold. It was a big effort to concentrate on walking or moving ? definitely had to ?think thru? the process.

I see a cranial osteopath (recommended by my POTS doc) and he believes these symptoms are from damage to the vagus nerve and hypothalamus ? either as a result of injury, stresses, normal wear and tear on your body. I?ve been seeing him monthly for a year and have had an 80-90% reduction in the frequency and severity of my symptoms. Can?t say for sure if it was all his treatments or a combo of meds, vitamins, time, etc. but I do know the vagus nerve controls the tremors and shivering and the hypothalumus controls body temp so, although osteopathic treatments for POTS are controversial, I figured they couldn?t hurt.

DelphicDragon- I agree with you that when you?re stressed, they are definitely worse ? and trying to prevent them from happening also makes them worse. Best to try and ride them out. I also got them when lying down as well.

[maggee]

hi Joe,

so sorry for all the "what the heck is this?" -- symptoms you're going through.

i read you are taking florinef...and, if you are not aware--florinef will deplete you of potassium and magnesium....and i believe--calcium also..

but--potassium is CRUCIAL, as magnesium is crucial also---and both have helped me immensely.

from my own experience--as i just 'salt-load'...as couldn't tolerate florinef---even salt loading--requires me to do potassium supplementation, and, i take low doses of calcium-magnesium also....throughout the day.

i get prescription potassium...extended release, and i take 10 MEQ per day.

10 MEQ====750 mg potassium.

not a high dose...but sure does cover the gap...especially, if I'm not eating good enough.

you can email me privately---if you want the brand of the extended release potassium...prescription--i get.

i do not mess with over the counter potassium, and am resourceful and investigative about the calcium-magnesium...i buy...also.

btw==no doc---ever told me to supplement with potassium--magnesium..calcium...when i was on florinef.

arghhhhhhhhhhhhhhhh

and--at one time i was on hydrocortisone--another steroid.....for 11 weeks....and NOT TOLD THEN EITHER.

I WAS ALMOST ''TOAST'...that time round...as i was in severe hypokalemia----[ potassium deficiency ].

thank the Lord for the internet, as info came to me in time....regarding steroids/potassium-magnesium-calcium==depletion==that comes w/ steroid use.

anyways, perhaps this will help you investigate this option, and help you...??/

hope so, JOe!

thoughts and prayers are with you..

hoping things improve soon for you!

Maggee

[ljoeb]

Thanks everyone for your thoughts.

My sister (who is a vet) also showed concern about my potassium levels since I am on florinef. My doctor has been keeping on top of that though, and I have my levels checked every 6-weeks or so, and they have been, in his words, just perfect.

I have found that "cold compress" has helped with my burning feeling, and now that I have increased Lyrica, the "burning feeling" has calmed down quite a bit. I did some research and found that the burning feeling can be a part of "autonomic neuropothy."

The tremors and jerks remind my wife of someone with "parkinsons disease." But I don't even want to go there as I know that can be related to "multiple system atrophe" which ain't too good. So I'll just let a neurologist who understands autonomic disorders help me with that one.

Great week to all!! Joe

[pat57]

As far as I know EEGs only catch epileptic seizures. Mine are lack of oxygen. And like I said if your BP is not registering it makes me suspicious. I can tell you that I am very weak and feel a faint coming beforehand. But also I don't get weak-dizzy or faint while laying down. So that's a big difference.

Tell anyone that might witness the event to "take notes" ,determine if you are aware or not, try to take pulse and time it. I did a search and potassium is linked with hypoxia + seizure and I have had low potassium. So you might want to take some. There is seizure+ Arrhythmia -mostly Arrhythmia FROM epileptic seizure. But I did find seizure FROM Arrhythmia .

I did lose my drivers license for 4 years.

My concern here is ,if you are having seizures, you need to pursue the cause.

Joe,

My mother had neuropathy burning sensations. Ativian worked for that.