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Dysautonomia (Autonomic Dysfunction) Community
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1697480 tn?1306787644

Lack of reality and heavyness

Hey yall,

So I have already seen a neurologist once, this past week, and he is ordering an MRI, which I should have done this week. But just curious about the symptoms that I'm having and if anybody has experienced them. My nuero said that I could have possible dysautonomia, or some cardiac problem. Either way, here's what has happened so far. I apologize if this is long. Just wanted to try to get everything in.

I am having the sensation that I'm not in reality, almost like I'm in a dream. It could be described as a "foggy" feeling but the discomfort of it has caused me to sit at home for a month. And everyday it seems the same. The disconnected feeling is probably the most prominent symptoms I'm having, I've been off work close to a month now. I am at my wits end. I feel like I can't function and preform basic tasks. I have the sensation that my mind is changing, almost like I don't really know myself anymore. I've had this rubbery feeling on my left side, predominantly in my left foot, but I've also had fatigue in my left leg (feels like I've ran alot, but only in my left leg.) I'm generally tired and fatiuged, when I get up in the morning I feel like I'm in a foreign world. When I walk I feel like the floor is kind of floating almost. I have no trouble keeping balance or walking though, it all seems normal. I have had a weird feeling in my left side, almost as if it's fuller than the other. Had some eye pain, but no double vision really, no color loss or change of contrast...which are some of the things that they look for in MS. I just went to a neurologist this past week, and he did a thorough physical exam. He said in about 95% of the patients, he can tell immediately, even without brain imaging, if there is something wrong. And he said my physical exam was perfect. I even mentioned that my eyes have been blood shot and feel tired (thinking that it might be Optic Neuritis) but he was very confident that I didn't have it. He did go ahead and schedule an MRI which I should go in for some time this week. He said the fact that I was having no loss of balance is a very good sign that I don't have MS, also the chance of having MS is lower because you're a male. The constant feeling of not being yourself though is so frustrating... This actually all started in 2006... when I started having this feeling that I was in a dream. Like I wasn't really here. I did so much testing, went to SO many specialists, including TWO neurologists who said nothing was wrong (although I didn't have a closed MRI, only an open one.) The feeling debilitated me, I couldn't do anything. Riding in a car was even a big challenge. Finally I saw a psychiatrist who said that I could have some anxiety, so he prescribed Lexapro which seemed to help. For some reason though, I was still worried that it could be something physical. But, I started feeling a little bit better, so I just basically lived with it. Things felt different, not like they used to... I would also get these bouts that I thought I was going to pass out almost, almost like a panic attack, but I don't know if that's what I was really having or if it was being caused by something else. It has been going on and off since then, until about a month ago when I got the pass out feeling while I was out to eat with a friend. I just felt very strange. I had to leave, and went home. The drive home was awful, the weirdest I've felt in a really long time. When I got home I was shaking, chills, couldn't sit still, starting to feel the "funny feeling" as I like to call it. So I came home from college to mom, and we went to the doctor. They tested me for stuff in my blood and said I had mycoplasma pneumonia. Fine. I took the medicine, and started to feel weirder and weirder. Stopped taking the medicine, went back to the doctor. Told him I wasn't feeling myself, like i'm in a dream, etc and he said it could be the medicine. So I tried a different medicine. No luck. Kept getting worse and worse. Then the feeling in the foot started happening. I was also having trouble talking. nothing bad, just felt like I couldn't come up with the right word sometimes. I also felt like my train of thought wasn't right. I couldn't concentrate as well. I just didn't feel like my normal sharp self, because I'm always on it. I went to the ER because at one point I felt like I was going to pass out... it was such a weird feeling and I was so scared. They did bloodwork and a CT scan just to make sure there was nothing wrong and everything came back normal. So then I went to see a neurologist. Waiting to see the nuero felt like the longest wait of my life.  The nuero said one thing that it might be is dysautonomia. I've been feeling so weird that I'm scared to drive a car... I haven't driven in at least two weeks. Probably more.

So all in all, I'm wondering if any of my symptoms line up with dysautonomia? I need some answers... I've been out of my life for a month and it's very scary. Just wondering what it could be!
33 Responses
875426 tn?1325532016
Since your neuro suggested dysautonomia or some cardiac problem, did he refer you to a cardiologist/electrophysiologist for testing of his theory/ to get it ruled out?  Since you are having weird feelig on your lower left extremity, did the neuro order a nerve conduction study and EMG to test it?  Feeling of unreality can be associated with panic attack, as can shaking and not sitting still.  It sounds like you may want to check back with the psychiatrist and tell them what symptoms you are still experiencing and see if they want to make any medication adjustment.  
Avatar universal
This may seem kind of "out there" but have you ever looked into Aspartame poisening? Do you drink a lot of diet drinks or eat/chew a lot of sugar free gum/products? A lot of those symptoms can mimic MS and a lot of other things...Like i said it may be a stretch but it could be worth a try to check out?
1697480 tn?1306787644
No, he did not. But I think that is a very good idea. I just went for a pretty much full body MRI yesterday so now playing the waiting game, but at my wits end!! Waking up every morning and feeling so weak and tired and not like myself has really taken a toll. I think I'm going to see a psyche if this MRI doesn't show anything. Maybe also look into a cardiologist. Any other thoughts appreciated!
1697480 tn?1306787644
I actually never drink diet sodas or use artificial sugars. That's a really good thought though... any thing else yall can think of would be super helpful! Just looking for some kind of answer!
875426 tn?1325532016
Well, the cardiologist or a medical center specializing in dysautonomia, such as Vanderbilt University medical center- the doctor who suggested you might have dysautonomia should be willing to back up his potential theory with a referral.  

And you might ask about an EMG with nerve conduction study if a neurologist's physical exam proves any difference in sensation in the left foot you are concerned about having a rubbery sensation as compared to the right.  

Since the Lexapro seemed to help, regardless, getting back with the psychiatrist to see if you need to adjust medication since it isn't working as well as you might hope for I think would be something worth booking an appointment about.

Other thoughts about your foot/leg would be- are you stressing the left leg/foot more in some way, by some action you are doing with that leg?  Or is there something about your bone structure that might be putting more stress on that leg (ie one leg longer than the other) or might you have something like a flat foot on that side versus the other that a podiatrist might be able to get you an orthotic for?

Let us know how the MRI comes out?
Avatar universal
HI!  So sorry to hear of your problems.  I just wanted to say that I have had weird episodes of dysautonomia since I was about 20 something...but only every few years.  I got a terrible case of pneumonia in 2006 from a spore in the desert.  This is when my terrible situation started with not feeling well, dizzy and just sick.  And I did get that heavy feeling too.  And car rides at the time were so scary.  They made me feel so anxious because it would make me either black out or feel like I was drunk.  It took them 2 years to figure out my thyroid was part of the problem, which helped to get that toxic thing out.  Then my issues continued even after that.  I was just finally diagnosed a few weeks ago with autonomic neuropathy.  But it was a long wait.  But make sure the pneumonia is treated.  Sometimes infections can make the dysautonomia worse or even cause it to show it's ugly self.  Hang in there.  I hope you get answers soon.
Avatar universal
Hi. Reading your story was basically like reading my own. I struggled with the same thing for 10 yrs! Finally, this past year, after seeing every kind of specialist, having every kind of test, and having them all be 'fine', I was referred to the University of Toledo where Dr. Blaire Grubb specializes in these kinds of things. I was finally diagnosed with postural orthostatic tachycardia syndrome (POTS for short) and neurocardiogenic syncope (NCS for short). Your symptoms sound exactly like mine! The only bad news is a lot of Dr's have no idea this even exists. Look into it. Hang in there. Praying all goes well and you can get back to life. I know it stinks doesn't it?!?  God bless =)
1697480 tn?1306787644
Hello everyone, just wanted to give you an update as to what has gone on over the past few days.

I heard back from my neurologist's office and they informed me that the MRI results were normal, both spine and brain. They told me they want to have a tilt table test done to test for dysautonomia, but I am not sure I am going to go through with it.

I found a really good internal medicine doc who was recommended by a friend. He informed me that there could be many things that could be causing my symptoms, and that he was going to work with the neurologist when the results from the MRI came back. I told him that I really don't have any fluctuations in my blood pressure, and that it's been being high, but never low really. I have continued to have the feelings of "woah" and kind of like passing out, but I'm beginning to wonder now if that feeling is just coming from the general weakness that I'm feeling.

I have been very weak over the last few days. Very weak. Also have been experiencing pain in spine, around mid back and also lower. Last night I had trouble getting any sleep at all. I took some melotonin, but I think it made me worse, I kept waking up, feeling like I was even more in a dream than I already had been.

I told the internal medicine doctor about the dreamy feeling that I'm having, like things are foreign and different feeling, that I just don't feel like myself. Like everything I touch, see and talk about seems un-normal. He prescribed me Wellbutrin to see if it would help lift the brain fog. He also gave me Lunesta, but I've been scared to take it because I don't know if it will make me feel weirder than I am already feeling.

I also have felt like my breathing isn't normal. I'm not really having any trouble breathing, but it just seems like my breaths aren't really satisfying, if that makes any sense at all. Like when I take a deep breath, it feels kind of funny. Also when I take a deep breath it seems like I get a tightness in my lower back.

The weakness on the left side of my body continues, which really also makes me not want to have the tilt table test. I am having constant, routine stopping symptoms, not spells. Even though I do get the light headed feeling sometimes, the feelings of weakness on the left side of my body and the weakness in general (feeling like I have no energy) have been constant for a month. I have noticed also that I am having a strange vibration feeling in my body, mostly in my leg. It is very subtle, but it feels very strange. Also continue to have the fullness feeling on my left side lower abdomen. I am thinking that I want to have some type of nerve study done... but my nuero wants this stupid tilt table test done. Thinking I might see if the internal medicine doc who was AWESOME (listened so well, seemed really intrigued/interested in my symptoms and how I was feeling, don't you love doctors like that?) to see maybe if he can order something like that.

I am so scared that it's going to get worse and worse and turn into something life threatening if I don't find it soon. I can tell that something, even though I don't know what, is wrong with my body.

Would there be some other kind of autonomic nerve disorder or disease that could be causing some of my symptoms?

I am so frustrated. I am feeling worse and worse everyday. I am hoping that the Wellbutrin will kick in in the next few days and at least give my mind some ease.
875426 tn?1325532016
If you only consent to do the part of the tilt table test without the medicine (like nitroglycerine) part, it wouldn't be that big of a deal.  But, if at home, you aren't having dramatic changes in pulse lying to standing, I'd report those numbers to your neurologist.  I would think he would have to have some kind of basis for ordering the tilt table- did they do orthostatic blood pressures and pulses on you in the office?

Did the neuro you saw do any cursory physical exam to see if you are having a sensory problem in your left leg/side?  If so, is he/she just wanting to do the tilt table first, rule out/confirm a form of orthostatic intolerance and then do an EMG/nerve conduction study on that left side?  
1375380 tn?1278895926
I was having the same symptoms you described and the tilt table test confirmed orthostatic hypotension. I am taking Florinef and Midodrine for it and they have made all the difference. I think the tilt table test would be worth it. If nothing else it would rule it out.
1697480 tn?1306787644
LivingInHope,

That is exactly what I was thinking... when I went in for my first visit he was more about checking me than me telling him my symptoms.. So he basically told me to hush while he checked me physically. Which I can understand to a point, but of course as soon as a I said "feel like I'm going to pass out" he said 'We might want to do a tilt table test'. It seems like he was not interested in checking for any other neurological diseases, but I guess maybe the MRI ruled those out? (since I dad have an MRI of spine and brain.) I guess I wouldn't really have a problem with doing the tilt table test without the IV medicine, the thing that I just keep saying is my blood pressure isn't going low! at all! It has always ran high.  I have been taking 3 measurements on each arm three times a day, to get a really good average, and it is always high. Anywhere between 130/85 and 150/91.

I think that the basis for him wanting the til table test is that I told him about a month ago that I DID pass out, but it was from me hitting my toe and seeing the sight of blood. From what I can tell it had nothing to do with what I'm feeling now. So, could the pass out feeling be caused from high blood pressure??

jonesnc,

I know, it might be a good idea. But as I said, my blood pressure never runs low. As long as I can remember it has always ran in the prehypertension or hypertension stage 1 range.
1697480 tn?1306787644
And also, he did not even take my blood pressure when I was in his office. He did do a physical exam though (that was about two weeks ago) and said that everything looked fine. I had to walk in a straight line, squeeze his fingers, etc etc. I was hoping that he was going to schedule some type of nerve study. And I was just looking, and my heart rate does change when I am standing. I just took my blood pressure and it was 133/92 with pulse of 108. I took it again and my heart rate went down to about 85. Interesting. I am looking at the symptoms of orthostatic Intolerance and they seem to be dead on.
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