Extremely Wired -- Please HELP!!

[rodneydeeeee]

So I have this problem that has completely taken over my life. I can no longer leave the house, I have to lay in bed all day long. I am desperate for help. From the second that I wake up and try to stand up, I get chronically faint, dizzy, but yet my body is severely wired. It's like a constant electrifying feeling at every second. At the same time, I am extremely fatigued, to where I cannot stay awake. The only way to describe it is wired but tired. I have seen hundreds of doctors, and am out of suggestions. Please help. I also hyperventilate, but breathing techniques, butyko breathing and bag breathing do nothing. I also get extremely clammy and cold extrememties.

 

[halcyon]

Have you been tested for POTS?

 

[melamine]

What are you eating? Did anything change in your environment before this? Can you unplug anything electrical and keep a distance from wireless? Do you have any metal in your mouth or body? It can be very difficult to identify a cause for symptoms like these.

 

[taniaaust1]

I too get wired and tired at times, I had that a couple of days ago after I'd crashed and ended up in hospital needing a drip for the POTS. I was terribly wired so came to PR and was posting very long posts due to being so wired but exhausted. (I ended up wiping myself out ME wise, so ended up spending then 36hrs in bed sleeping).

You are needing orthostatic testing eg tilt table test or a poor mans test for at least POTS (postural orthostatic tachycardia syndrome).. I think the wired part of this may come from the excess noradrenaline which goes along with this. Ive had levels so high that 3 of my test results with different labs were dismissed as being errors.

I also get extremely clammy and cold extrememties.

This can also cause ones body to like go into like a shock state (cold and clammy) as blood volume with this is can go way too low. You probably would of come good with 1 or 2 1 Litre bags of saline IV to help fix some of this.

anyway, you need orthostatic testing done so need to find somewhere who does tilt table tests or who are familiar with POTS or other dysautonomias in ME/CFS (you could also home test yourself for POTS but make sure you have someone there with you for safety when you do).

 

[Hip]

@rodneydeeeee
"Tired but wired" has often been used to describe the ME/CFS state. Dr Paul Cheney talks about this "wired" condition in this article.

 

[Alea Ishikawa]

Looks like you have a double whammy on COMT, MTHFR, MTRR, CBS, and VDR Taq. How much methyfolate and hydroxoB12 have you been taking? Did you switch to a B vitamin complex without folic acid?

Are you still having the exact same issues from 2013? How much water and electrolytes are you drinking per day?

Is the blood in your stools black or red? (Sorry for the TMI, but this could be important.)

Have you ruled out a UTI, liver problems, etc.? Have you been tested for parasites? (It might be ugly to think about, but sometimes it happens.) I agree with Caledonia's sentiment here and I suggest you see a GI doc.



If you were diagnosed with CFS, the cold extremities, dizziness, and breathing problems may be a part of PEM (commonly referred to as a "crash")/low energy. It might also be orthostatic intolerance (OI). Does your heart rate go from the 70s laying down to over 100 beats per minute within 5 minutes? Or do you faint after standing up?

Have your cortisol levels been tested (24-hour cortisol test via saliva or blood)?

Have you been tested for a pathogen like M. pneumoniae or C. pneumoniae?

 

[taniaaust1]

Hi, I just read the 2013 post of yours and are wondering if you ever had the proper treatment for your MTHFR mutation or ever went and saw a specialist for that. Its kind of important you do as it would be affecting your body. Be aware that as your system hasnt functioned well in regards to that all your life, it's not an instant fix thing but one may need to be on the "right" supplements for some time before noticing an improvement.

Not treating this, raises your risk factor of having a stroke amoung other things.

 

[rodneydeeeee]

Sorry I didn't reply earlier. I didn't even know people responded until I seen my junk mail today. I have been tested for POTS a while back, and don't think it raised any flags.

I've tried so many different diets (GAPS, SCD, PALEO, Food Elimination, Ray Peat, etc). Nothing has done good. I still eat extremely good. I don't have any metal in my mouth. I also have suspected EMF, but not sure. I feel bad ALL the time, no matter where I am.

You mentioned testing for POTS. I plan to get this done soon. I did lay down and get my vitals taken, then sit up, then stand up, and they all remained the same. Is that similar?

Thanks for the article. I have tried Klonopin, Xanax, etc. It's so sporadic. Sometimes they help by making me extremely tired, sometimes they make me worse, etc. I try and avoid them as much as possible so I don't go off the deep end.

I'm currently not taking any B Vitamin. The only B supplement I take is liver since it's loaded. I tried Methyl B12 last year and didn't notice anything. I do have many of the same symptoms, but now much more severe. I'm severely fatigued and can't stay awake, but yet I am so jittery and nervous for no apparent reason. I'm also very foggy, cloudy and depressed. The blood in my stool was bright red, likely from straining. I also have had many tests done, and seen 6 different GI docs. No one has any answers.

No, I never did treat MTHFR because it seemed so darn tricky. I was on multiple facebook groups and no one seemed to have a grip on it.

 

[alice111]

@rodneydeeeee did your symptoms get worse when you started the liver? I recently had a similar worsening of symptoms with dessicated liver and the extreme wired feeling

@taniaaust1 how did you test for noradreneline? (You refer to it being very high)

 

[rodneydeeeee]

I do seem to get worse. It's weird, because liver is one of the most power packed nutrients in the world.

 

[alice111]

It's VERY weird! I still have not figured out why... Detox, too much vitamins... Not sure. But I suggest try stopping it? It didn't complete eliminate mine, but it eas better when I stopped