What Type of Dysautonomia

[kms1990]

Hi All,

I am new here, and hope everyone is well. (or as well as they can be)

I have been battling Dysuatonomia and CFS for about 4 years now and have been evaluated by some of the top doctors in each specialty. Yet, I have never asked or been told what type of Dysautonomia I have. For the longest time I was able to “push through” my symptoms and work full time and go to school. I always had cold feed and horrible raynauds during this time. I often felt very anxiety driven and energized. However, very recently I feel like something very physical has changed in my body. I no longer have any of those high energy sensations and my hands and feel often are very warm. I have become much more faint and feel dizzy almost all of the time. This has all occurred over the last month after what I thought was going to be a week crash, however it has not gone away. Does anyone here have any experience with neurology or neurotransmitters. I feel like something very neurological has changed with this crash. Whatever compensatory mechanisms were in action before, do not seem to be working any longer.

Thanks all!!

[Dr. Diana]

Hi All,

I am new here, and hope everyone is well. (or as well as they can be)

I have been battling Dysuatonomia and CFS for about 4 years now and have been evaluated by some of the top doctors in each specialty. Yet, I have never asked or been told what type of Dysautonomia I have. For the longest time I was able to “push through” my symptoms and work full time and go to school. I always had cold feed and horrible raynauds during this time. I often felt very anxiety driven and energized. However, very recently I feel like something very physical has changed in my body. I no longer have any of those high energy sensations and my hands and feel often are very warm. I have become much more faint and feel dizzy almost all of the time. This has all occurred over the last month after what I thought was going to be a week crash, however it has not gone away. Does anyone here have any experience with neurology or neurotransmitters. I feel like something very neurological has changed with this crash. Whatever compensatory mechanisms were in action before, do not seem to be working any longer.

Thanks all!!

Welcome, kms1990, it sounds like you have “idiopathic dysautonomia”, meaning, no one knows what the cause is, but it is likely not the fatal kinds (such as ALS, etc). It is unclear to me if you have fatigue (mental and/or physical) with your crashes? That is what happened to me — but it took about 3 years. Like you, I felt like I was ‘running out of something’. I just didn’t know what! We all seem to have neurotransmitters gone crazy! The Symptoms Checklist may help us. Can you complete it and get it back to me (just remind me who you are). The checklist is listed under “Articles and Handouts” on the home page. Hang in, new friend. Big hug…

[kms1990]

Hi Dr. Diana,

Thanks very much for you reply. I have sent the symptom check list over to the email listed. Maybe you will see a trend in my symptoms :). Please let me know. Thanks so much!!

[MJ]

Hi kms1990.

OMG! We have the same thing! We MUST figure this out. For decades now I have struggled with having burning hot fingers and toes. They turn red and hurt. This is when I go into a very low functioning state. However, when I flip into having freezing cold fingers and toes, I function much better. I also have Raynauds phenomenon.

Also, when I get the hot fingers and toes, the veins in my entire body are extremely dilated, exacerbating pots etc. And when my fingers and toes are cold and I can function, it seems that the veins in my entire body are constricted compared to the other states-I guess this would be considered normal dilation.

If I take a nap in the afternoon, when I lay down-my toes turn freezing cold and I have to put multiple socks and slippers on. By the time I wake up from the nap, my toes are on fire And I cannot function. Morning equals cold toes and bedtime laying down equals hot toes, pounding heart all over dilated veins, etc.

Do you have any symptoms like these? Dr. Diana-have you heard of anyone else having these symptoms? Do you know what this is?

Thanks,
MJ

[MJ]

PS. The doctors give me “that look” when I tell them this, but it really does help! I have a juicer and make celery parsley juice. Whenever I have one of these attacks of hot fingers and toes and dilation of veins, etc. I drink 500 mL of this juice. I feel better in minutes. The juice is known to absorb excess adrenaline, excess insulin and other excess hormones. Perhaps that is what is going on. Unfortunately, it doesn’t last forever, but it gets it under control and I feel much better.

I actually videotaped myself with the symptoms-with visible bulging veins. Then I drink the juice, and the veins constrict. It’s like magic!

MJ

[Dr. Diana]

PS. The doctors give me “that look” when I tell them this, but it really does help! I have a juicer and make celery parsley juice. Whenever I have one of these attacks of hot fingers and toes and dilation of veins, etc. I drink 500 mL of this juice. I feel better in minutes. The juice is known to absorb excess adrenaline, excess insulin and other excess hormones. Perhaps that is what is going on. Unfortunately, it doesn’t last forever, but it gets it under control and I feel much better.

I actually videotaped myself with the symptoms-with visible bulging veins. Then I drink the juice, and the veins constrict. It’s like magic!

MJ

I hear about our veins and arteries going nuts all the time — it’s especially noticeable in the fingers/toes, but I *think* it happens to the larger, less peripheral veins/arteries in many of us, too. It’s just harder to see there. I DO wonder about a sort of peripheral neuropathy (as is seen in diabetes).
May I speak for everyone here, that no matter how seemingly disgusting celery parsley juice sounds, WE ARE DYING TO HEAR THE RECIPE and if you have a video of it changing your venous flow, I would love, love, love to see it! I know some of us use licorice root to cause vasoconstriction, but you are the first, my friend, to tell me about celery parsley juice! 😉

[kms1990]

MJ,

Its very interesting to hear you have similar symptoms as me. These are very similar to what I used to experience. Unfortunately, I have taken some what of a set back and no no longer have the energy experiences and also don’t have the flushing in my hands and feet as often. (I’d take these back any day compared to what I experience now). I have a theory on why this might be happening. I think there are actually are 2 different scenarios why hands and feet might get cold. 1) would be that you have overall constriction caused by hormones or excessive response to hormones. 2) You are not having access hormone realize, however your autonomic nervous system decided to stop constricting the large veins and arteries, therefore there is less circulation going to the entire body. In this instance I think the heart can virtually beat as fast and hard as it wants but without good constriction in the vessels close to it the heart, blood is not able to make it with much force to the rest of the body. I think the second scenario is what I am currently experiencing for the past month. It stinks.

[Lab-Scientist-Lady]

I also get the ice cold toes,nose, and fingers and Raynaud’s. The older I get the harder it is to regulate my thermostat. One minute I am freezing, the next I feel like I am in the pits of hell. My friends and husband think it is funny, but it really gets to me. The cold fingers, toes, and nose are painful, and when I am too hot I get nauseated and faint. Do you have trouble handling hot or cold drinks? I do! Or if I have to go dig through the freezer to get something. Oh the pain in my hands! :-S
Shonda

[Author]

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