Aa
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!
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!
And one more thing... would OI have anything to do with weakness on just ONE side of my body? Or do people usually get the weakness in both their extremities? The whole feeling of fatigue is throughout my whole body, but i only really have weakness on my left side.
Since your blood pressure is consistently higher than what the doctors now desire, did none of them ever try you on blood pressure medicine? Your difference in pulse the way you describe does not meet the criteria of postural orthostatic tachycardia syndrome. However, I'm not sure you did the orthostatic blood pressures and pulses the right way? May I suggest?
First, lie down for ten minutes, then take your blood pressure and pulse. Then, stand up for at least one minute, and take them again. Your body should be able to adjust in about one minute to the change in position without a huge difference. Tell me what numbers you get?
I know high blood pressure can cause headaches anyway, and that prolonged high blood pressure can increase risk for stroke, so I hope you and your doctor can find a blood pressure medication that works for you. There are various reasons for peripheral neuropathy and the neurologists only can figure out the cause in a certain percentage of cases with the tests they know to do. For a parent of mine, evidently MGUS is the culprit of bi-lateral peripheral neuropathy. But for many, the cause of their peripheral neuropathy remains a mystery.
First, lie down for ten minutes, then take your blood pressure and pulse. Then, stand up for at least one minute, and take them again. Your body should be able to adjust in about one minute to the change in position without a huge difference. Tell me what numbers you get?
I know high blood pressure can cause headaches anyway, and that prolonged high blood pressure can increase risk for stroke, so I hope you and your doctor can find a blood pressure medication that works for you. There are various reasons for peripheral neuropathy and the neurologists only can figure out the cause in a certain percentage of cases with the tests they know to do. For a parent of mine, evidently MGUS is the culprit of bi-lateral peripheral neuropathy. But for many, the cause of their peripheral neuropathy remains a mystery.
They have not tried me on any blood pressure medicine. Since my blood pressure is really usually only in the pre-hypertension stage, I am assuming there is no real need for medicine. But lately it has been running high, not sure if it is from the Wellbutrin or what. But here are the numbers.
Laying down for 10 minutes: 118/69 pulse 69
Standing for about two minutes: 131/90 pulse 97
Do you think the Wellbutrin could be causing my blood pressure to jump? I mean, if I really think about it, I haven't really been getting consistent readings over 140 for SYS until I started taking it on Wednesday, and I know one of the side effects is heightened blood pressure.
I haven't had any headaches at all.
This is such a mystery. What symptoms do you have with MGUS, and does that affect young people? I am only 20.
Laying down for 10 minutes: 118/69 pulse 69
Standing for about two minutes: 131/90 pulse 97
Do you think the Wellbutrin could be causing my blood pressure to jump? I mean, if I really think about it, I haven't really been getting consistent readings over 140 for SYS until I started taking it on Wednesday, and I know one of the side effects is heightened blood pressure.
I haven't had any headaches at all.
This is such a mystery. What symptoms do you have with MGUS, and does that affect young people? I am only 20.
If your blood pressure was consistently above 119/79, which is considered the new normal (used to be 120/80), prior to taking Wellbutrin
(which has hypertension only as an uncommon side effect according to my 2008 nursing drug handbook, while tachycardia-resting heart rate over 100 as a common one):
you might ask the doctor if you shouldn't be taking blood pressure medication to reduce the risk for adverse events that can happen from prolonged untreated elevated blood pressure. But before you do that, you might try to see if life style changes, such as exercise, losing weight if need to shed extra pounds, and deep breathing might naturally lower your blood pressure.
Wellbutrin has a weak effect on inhibiting norepinephrine re-uptake, and norepinephrine constricts blood vessels.
Your numbers do look like you are suffering from orthostatic intolerance to a degree.
Your pulse normally should only go up about 10-15 beats a minute according to one article, your diastolic, by about 10 and a slight change only should occur in your systolic- your numbers show an exaggerated response to standing up. I would ask the doctor if Wellbutrin could be causing this, since it is acting, even though weakly, on inhibiting your norepinephrine uptake. And though with that simple home test, your heart didn't jump 30 plus beats a minute, like mine does with P.O.T.S., you have enough of a fluctuation I think you really should seriously consider a formal tilt table test by an electrophysiologist/cardiologist to see if they would diagnose you with an orthostatic intolerance disorder of some kind. The part I would skip, if I had to do it again, was having the nitroglycerine tablet under the tongue part. You can decline to do the medicine part.
If the doctor tested you with a nerve conduction study and EMG and that showed abnormalities causing peripheral neuropathy, he/she should order certain lab tests to try, if possible, to determine the cause- a blood test demonstrated MGUS in my parent suffering from peripheral neuropathy. It looks like it may be pretty rare for a person to get MGUS under age forty.
(which has hypertension only as an uncommon side effect according to my 2008 nursing drug handbook, while tachycardia-resting heart rate over 100 as a common one):
you might ask the doctor if you shouldn't be taking blood pressure medication to reduce the risk for adverse events that can happen from prolonged untreated elevated blood pressure. But before you do that, you might try to see if life style changes, such as exercise, losing weight if need to shed extra pounds, and deep breathing might naturally lower your blood pressure.
Wellbutrin has a weak effect on inhibiting norepinephrine re-uptake, and norepinephrine constricts blood vessels.
Your numbers do look like you are suffering from orthostatic intolerance to a degree.
Your pulse normally should only go up about 10-15 beats a minute according to one article, your diastolic, by about 10 and a slight change only should occur in your systolic- your numbers show an exaggerated response to standing up. I would ask the doctor if Wellbutrin could be causing this, since it is acting, even though weakly, on inhibiting your norepinephrine uptake. And though with that simple home test, your heart didn't jump 30 plus beats a minute, like mine does with P.O.T.S., you have enough of a fluctuation I think you really should seriously consider a formal tilt table test by an electrophysiologist/cardiologist to see if they would diagnose you with an orthostatic intolerance disorder of some kind. The part I would skip, if I had to do it again, was having the nitroglycerine tablet under the tongue part. You can decline to do the medicine part.
If the doctor tested you with a nerve conduction study and EMG and that showed abnormalities causing peripheral neuropathy, he/she should order certain lab tests to try, if possible, to determine the cause- a blood test demonstrated MGUS in my parent suffering from peripheral neuropathy. It looks like it may be pretty rare for a person to get MGUS under age forty.
That is very interesting information, thank you for your input. Yes, even when I would take my blood pressure at my grandmother's with her little talking blood pressure monitor, it would always say that it was "high". And I haven't had a primary care doctor until now (the internal medicine doctor) so I guess I haven't really gotten my blood pressure checked often, until I started checking it since I've been sick. So I definitely think you're right, that I do have high blood pressure to an extent, even though most of the time my numbers aren't above 140 for SYS. It has been above that a some points, but the averages are running anywhere between 130 and 140.
I guess I am going to have to do the tilt table test. I am really scared about it but I guess it will be okay. The main symptom that I am having is this feeling of being in a dream/loss of reality. It is really concerning me, and it is the main thing that hampers me every single day. I could handle any of the physical symptoms that I am having if it wasn't for this weird feeling that I just cannot seem to shake. It scares me. I haven't been out of the house except to go to the doctors visits that I have had and even then it is a MAJOR challenge, because the feelings overwhelm me. It has debilitated me and really made it very hard to function, even here just in my house, doing very simple things, because it feels like I am not doing them. It is so hard to explain but it is the most awful feeling that I have ever experienced. I feel like I don't know my body anymore, like I don't know me. And I'm not controlling my functions. But as I said, MRI was normal.
What kind of medicines do they have you on? Some type of beta blockers? Those would be the same kind of medicines that the would give me for high blood pressure I'm assuming. And do you have any types of mental symptoms associated with yours? If so, what medicines do you find work best for you?
I have had the "dreamy" feeling before, back when I was about 14 or 15.. and I was also not feeling well for about a month. I went to many many specialists when I was finally so desperate I went to a psyche, and they prescribed me Lexapro, which actually helped. I wanted to say something to my doctor about it, but before I could he said he recommended Wellbutrin to help with the "dreamy" feeling. What does your drug book say about it? How long does it take for it to kick in? I am so desperate for some relief, I am wondering if I should try to go back to it... I need to be able to function, even if it's with physical symptoms... Just so I can get to my doctors appointments with some ease.
If I do the tilt table test, I will definitely not be taking any types of medication. I will not be passing out on that table, no need for that. Especially since I have been monitoring my own blood pressure and it does not go low, even when I have an "attack".
I am very concerned that it could be something autoimmune, because of the weird weakness that I am having... although I know that any autonomic dysfunction could also cause weakness. I have also not been sleeping well at ALL... and I think that's what is also contributing to my weakness, that I am not sleeping, so I just started taking Lunesta last night... didn't get a ton of sleep but I have read that it can take a couple of days for it to kick in fully.
The neurologist's office has not informed me of any other types of tests that they are going to do. The girl just said that they would be calling me about the tilt table test. I have no idea if they are going to do an EMG... I would like them to though.
So what would you suggest? Should I get back in touch with my Internal doc and just see what he says and maybe see if he can get me some relief of my mental stuff before they start flipping me around on a table?
I guess I am going to have to do the tilt table test. I am really scared about it but I guess it will be okay. The main symptom that I am having is this feeling of being in a dream/loss of reality. It is really concerning me, and it is the main thing that hampers me every single day. I could handle any of the physical symptoms that I am having if it wasn't for this weird feeling that I just cannot seem to shake. It scares me. I haven't been out of the house except to go to the doctors visits that I have had and even then it is a MAJOR challenge, because the feelings overwhelm me. It has debilitated me and really made it very hard to function, even here just in my house, doing very simple things, because it feels like I am not doing them. It is so hard to explain but it is the most awful feeling that I have ever experienced. I feel like I don't know my body anymore, like I don't know me. And I'm not controlling my functions. But as I said, MRI was normal.
What kind of medicines do they have you on? Some type of beta blockers? Those would be the same kind of medicines that the would give me for high blood pressure I'm assuming. And do you have any types of mental symptoms associated with yours? If so, what medicines do you find work best for you?
I have had the "dreamy" feeling before, back when I was about 14 or 15.. and I was also not feeling well for about a month. I went to many many specialists when I was finally so desperate I went to a psyche, and they prescribed me Lexapro, which actually helped. I wanted to say something to my doctor about it, but before I could he said he recommended Wellbutrin to help with the "dreamy" feeling. What does your drug book say about it? How long does it take for it to kick in? I am so desperate for some relief, I am wondering if I should try to go back to it... I need to be able to function, even if it's with physical symptoms... Just so I can get to my doctors appointments with some ease.
If I do the tilt table test, I will definitely not be taking any types of medication. I will not be passing out on that table, no need for that. Especially since I have been monitoring my own blood pressure and it does not go low, even when I have an "attack".
I am very concerned that it could be something autoimmune, because of the weird weakness that I am having... although I know that any autonomic dysfunction could also cause weakness. I have also not been sleeping well at ALL... and I think that's what is also contributing to my weakness, that I am not sleeping, so I just started taking Lunesta last night... didn't get a ton of sleep but I have read that it can take a couple of days for it to kick in fully.
The neurologist's office has not informed me of any other types of tests that they are going to do. The girl just said that they would be calling me about the tilt table test. I have no idea if they are going to do an EMG... I would like them to though.
So what would you suggest? Should I get back in touch with my Internal doc and just see what he says and maybe see if he can get me some relief of my mental stuff before they start flipping me around on a table?
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