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!
hey did you ever figure out what was going on? I have had that dreamlike feeling for the past 7 months constantly and was diagnosed with dysautonomia (neurocardiogenic syncope) about 2 months ago.
Hello I'd just like to say I've been getting all of these Symptoms, I'm 19 and It's being going on for about 5 months now, not as long as some of use, I feel in a dream world, Unattached of reality, like there is some sort of Fogginess inside of my mind, or I can't stare at things for to long, as I seem like It gets worse, I dread going out, cause when I walk I feel like It's not really me walking, like the world around me seems in no way real, places that I'm used to seems unfamiliar and weird, I get confused all of the time, I used to have really bad Head aches for about 3 months, but they have Stopped, they have stopped, but time to time I still get bad pains in my had, I went for a CT scan, which came back normal, they said I had Anxiety, but It just seems like It's something else, Like I don't feel myself at all, like I don't even know who I am anymore, I get numbness in my hands all the time, feet, and legs mostly in my left side, when I see traffic It feels like I'm watching them as If I'm watching a movie, or when I look at people they seem non real, I feel distant from life, I've never been like this in my whole life before except for these last 5 months, I was always full of confidence, motivation, lived life happy, was very into exercise, eating healthy, socialising with friends, was always the life and soul of the party, enjoyed crazy adventures was always up for anything, but No I dread going out with friends, I've no energy, all I want to do Is be in my room, cause It's where I feel safe, when I go out I feel everything to much, which is due to because I constantly feel in a dream, I sleep more, my confidence is doing, I can't focus, can't think straight, mind goes blank, of no interest in anything especially of the things I was enjoyed and loved, my mood goes from being okay, till feeling angry, sad, things can annoy me easily, I get heart pains, chest pains quite a lot, but they've seem to eased of a lot, It's mostly the 'whole dream un attached from reality' is still with me, everyday, non stop, every minute, I don't know what to do, can anyone give me advice or what they might think I might be going threw, it would be much Appreciated, many thanks,
Hello I'd just like to say I've been getting all of these Symptoms, I'm 19 and It's being going on for about 5 months now, not as long as some of use, I feel in a dream world, Unattached of reality, like there is some sort of Fogginess inside of my mind, or I can't stare at things for to long, as I seem like It gets worse, I dread going out, cause when I walk I feel like It's not really me walking, like the world around me seems in no way real, places that I'm used to seems unfamiliar and weird, I get confused all of the time, I used to have really bad Head aches for about 3 months, but they have Stopped, they have stopped, but time to time I still get bad pains in my had, I went for a CT scan, which came back normal, they said I had Anxiety, but It just seems like It's something else, Like I don't feel myself at all, like I don't even know who I am anymore, I get numbness in my hands all the time, feet, and legs mostly in my left side, when I see traffic It feels like I'm watching them as If I'm watching a movie, or when I look at people they seem non real, I feel distant from life, I've never been like this in my whole life before except for these last 5 months, I was always full of confidence, motivation, lived life happy, was very into exercise, eating healthy, socialising with friends, was always the life and soul of the party, enjoyed crazy adventures was always up for anything, but No I dread going out with friends, I've no energy, all I want to do Is be in my room, cause It's where I feel safe, when I go out I feel everything to much, which is due to because I constantly feel in a dream, I sleep more, my confidence is doing, I can't focus, can't think straight, mind goes blank, of no interest in anything especially of the things I was enjoyed and loved, my mood goes from being okay, till feeling angry, sad, things can annoy me easily, I get heart pains, chest pains quite a lot, but they've seem to eased of a lot, It's mostly the 'whole dream un attached from reality' is still with me, everyday, non stop, every minute, I don't know what to do, can anyone give me advice or what they might think I might be going threw, it would be much Appreciated, many thanks,
If this is still a problem, I started my medical career at the age of 4 months,
and 63 years later--it is worse than ever. So here are my thoughts:
My neck quite suddenly grew a large, very conspicuous, extremely tender
GOITER--which is a fair sign that some of my billions of lymphocytes were
attacking me as opposed to defending me against some nasty microbe that
could make me sick, cause severe damage to my brain, or cause my death in
10 minutes or 10 years.
You must have, above all, a TSH--it is that test that determines if you are normal, hypo, or hyper. Of course have the T3s and all, but had my brother
not been an endocrinologist and--at that time--physician to Pres Bush Sr--givibg him access to the best endocrinologists in the world--well, first, I might
have had my thyroid removed and if my doctors decided to leave it, I 'd have
died in a thyroid storm--heart going too fast, lungs breathing too fast,
metabolizing food and the proteins, chemicals, minerals they contain so that every cell in the body gets nurishment so fast, that the various parts of the digestive system and the circulatory system let the stuff just pass on through-one end to the other--because now the racing brain(which gives the commands
to all) is giving confused, garbled, or nonsensical messages to the nervous
system, which is its messenger.You do not get O; you don't get food or drink--
YOU die. Normal thyroid is .5-5 in range. Above 5, you are HYPO; below .5,
you are HYPER (sounds like it ought to be the other way around, I know< but I
have blabbed too much; go to Google and it is really quite easy to understand.
One thing more: I have very nearly died of dehydration. It can cause seizures;
hallucinations, tachycardia at first till it (the heart)slows and 3 days without fluid, it dies and so do you.
and 63 years later--it is worse than ever. So here are my thoughts:
My neck quite suddenly grew a large, very conspicuous, extremely tender
GOITER--which is a fair sign that some of my billions of lymphocytes were
attacking me as opposed to defending me against some nasty microbe that
could make me sick, cause severe damage to my brain, or cause my death in
10 minutes or 10 years.
You must have, above all, a TSH--it is that test that determines if you are normal, hypo, or hyper. Of course have the T3s and all, but had my brother
not been an endocrinologist and--at that time--physician to Pres Bush Sr--givibg him access to the best endocrinologists in the world--well, first, I might
have had my thyroid removed and if my doctors decided to leave it, I 'd have
died in a thyroid storm--heart going too fast, lungs breathing too fast,
metabolizing food and the proteins, chemicals, minerals they contain so that every cell in the body gets nurishment so fast, that the various parts of the digestive system and the circulatory system let the stuff just pass on through-one end to the other--because now the racing brain(which gives the commands
to all) is giving confused, garbled, or nonsensical messages to the nervous
system, which is its messenger.You do not get O; you don't get food or drink--
YOU die. Normal thyroid is .5-5 in range. Above 5, you are HYPO; below .5,
you are HYPER (sounds like it ought to be the other way around, I know< but I
have blabbed too much; go to Google and it is really quite easy to understand.
One thing more: I have very nearly died of dehydration. It can cause seizures;
hallucinations, tachycardia at first till it (the heart)slows and 3 days without fluid, it dies and so do you.
Doesn't Lexapro and all those antidepressant drugs cause fatigue. I take xanax sometime
wow I really have the same breathing issues of not being satisfied. we should chat
I would investigate a Infectious Mycoplasma infection (s). More than likely Mycoplasma Fermentans-Incognitus.
Hi,
Hope you are continuing to find some answers to your symptoms. I don't know anything about enlarged spleen, so can't comment on that. I hope you can get a tilt table test done by a place that can properly test for and rule out Dysautonomia, e.g Orthostatic Intolerance, such as Postural Tachycardia since your pulse goes way up when you stand up. This can definitely cause a feeling of being out of it. I have that a lot. It is very uncomfortable and gets worse when I am out of my house. Anyway, there are a few places that are the best for evaluating Dysautonomia and it looks like Vanderbilt is the closet to you. I went to the Cleveland Clnic, which is closer for me since I am in upstate NY.
Keep us posted on your evaluation and how you are doing. I know it can take a very long time to get things sorted out and that can be very upsetting for anyone. Also Dysautonomia/Orthostatic Intolerance/ POTS can cause anxiety and insomnia. Of course, being sick and trying to find answers can too. What I am saying is that there may be more than one thing contributing to your anxiety/depression/insomnia. Hope this makes sense.
Take care,
Laura
Hope you are continuing to find some answers to your symptoms. I don't know anything about enlarged spleen, so can't comment on that. I hope you can get a tilt table test done by a place that can properly test for and rule out Dysautonomia, e.g Orthostatic Intolerance, such as Postural Tachycardia since your pulse goes way up when you stand up. This can definitely cause a feeling of being out of it. I have that a lot. It is very uncomfortable and gets worse when I am out of my house. Anyway, there are a few places that are the best for evaluating Dysautonomia and it looks like Vanderbilt is the closet to you. I went to the Cleveland Clnic, which is closer for me since I am in upstate NY.
Keep us posted on your evaluation and how you are doing. I know it can take a very long time to get things sorted out and that can be very upsetting for anyone. Also Dysautonomia/Orthostatic Intolerance/ POTS can cause anxiety and insomnia. Of course, being sick and trying to find answers can too. What I am saying is that there may be more than one thing contributing to your anxiety/depression/insomnia. Hope this makes sense.
Take care,
Laura
Hi all!! Just wanted to update you on what has went on. I have basically have a good physical answer, but no dx yet.
First of all, here is a link to my entire lab report, so I can get yall's opinion on anything that you see that might throw up a red flag.
http://freepdfhosting.com/233464737c.pdf
There you will see that I did in fact get Free T4 tested, which was normal.
Alot has happened since I have last updated you all! I am somewhat excited but also still discouraged because I still do not have a dx.
First of all, went back to my internist, who I told that I was still concerned about this fullness feeling in my left side. I told him that I wanted an Ultrasound and also an ECHO because I had missed one that I was supposed to get back at the beginning of the month. That is what I love about him; I feel that he will pretty much run any test that he feels will give me piece of mind.
So I had the ECHO and Ultrasound done last week.
ECHO came back fine...
However, Ultrasound revealed an enlarged spleen!!! So, FINALLY I have something solid to work with here. I have pretty much has the full feeling in my left side the entire time I've been sick, but no one has seemed to be interested enough to check it, until now. SO, my doctor called two days ago and informed me of that. They seem to think that it could be a relapse of Epstien-Barr virus. Interesting to note, I was sick with mono about a year and a half ago, but thankfully I was able to get over it pretty quickly.
Internist said my vitamin B12 level was kind of low, not extremely, but as you can see in the lab it was kind of in the lower range. So he prescribed me a B12 nose spray to help to kind of boost it, he said it would help me feel better. I have also been taking B12 lozenges. Can't get enough B12! Also interesting to note, although at the time that I scanned that lab report my B6 level wasn't back, but now it is and it is elevated, about 10 points above the range. Sooo I have to pretty much stop any intake of B6 that I can help. Obviously it's not extremely out of the range, but out of whack just a bit.
He also changed me from Wellbutrin to Cymbalta and then to Lexapro. I didn't like the Cymbalta at all... made me feel hot and cold... chills and then a hot flash. So I stopped that and he switched me to Lexapro, which was my miracle drug about 4 years ago. I have only been on it for about a week but hopefully it will start to kick in soon. I hope it does, because I have still been taking the Ativan also, .5mg in the morning and evening, which still seems to be helping a little. I think that it has kind of hit its peak at this point, but still seems to help a little. really praying I am not getting addicted to it, but it is the only thing that I have that seems to help me even a little.
I am going in for more bloodwork today. I am hoping that they do some type of culture on me also to check for any other types of antibodies. I also requested an HIV test along with what I am getting done today, just to cover the bases.
I am continuing the Lexapro because I know that no matter what I have, I am depressed and do have anxiety so I feel that it can't do anything but help, especially since I had a good experience with it a while back.
actually leaving here in a moment for bloodwork. I hate car rides. :(
i just want a dx.
First of all, here is a link to my entire lab report, so I can get yall's opinion on anything that you see that might throw up a red flag.
http://freepdfhosting.com/233464737c.pdf
There you will see that I did in fact get Free T4 tested, which was normal.
Alot has happened since I have last updated you all! I am somewhat excited but also still discouraged because I still do not have a dx.
First of all, went back to my internist, who I told that I was still concerned about this fullness feeling in my left side. I told him that I wanted an Ultrasound and also an ECHO because I had missed one that I was supposed to get back at the beginning of the month. That is what I love about him; I feel that he will pretty much run any test that he feels will give me piece of mind.
So I had the ECHO and Ultrasound done last week.
ECHO came back fine...
However, Ultrasound revealed an enlarged spleen!!! So, FINALLY I have something solid to work with here. I have pretty much has the full feeling in my left side the entire time I've been sick, but no one has seemed to be interested enough to check it, until now. SO, my doctor called two days ago and informed me of that. They seem to think that it could be a relapse of Epstien-Barr virus. Interesting to note, I was sick with mono about a year and a half ago, but thankfully I was able to get over it pretty quickly.
Internist said my vitamin B12 level was kind of low, not extremely, but as you can see in the lab it was kind of in the lower range. So he prescribed me a B12 nose spray to help to kind of boost it, he said it would help me feel better. I have also been taking B12 lozenges. Can't get enough B12! Also interesting to note, although at the time that I scanned that lab report my B6 level wasn't back, but now it is and it is elevated, about 10 points above the range. Sooo I have to pretty much stop any intake of B6 that I can help. Obviously it's not extremely out of the range, but out of whack just a bit.
He also changed me from Wellbutrin to Cymbalta and then to Lexapro. I didn't like the Cymbalta at all... made me feel hot and cold... chills and then a hot flash. So I stopped that and he switched me to Lexapro, which was my miracle drug about 4 years ago. I have only been on it for about a week but hopefully it will start to kick in soon. I hope it does, because I have still been taking the Ativan also, .5mg in the morning and evening, which still seems to be helping a little. I think that it has kind of hit its peak at this point, but still seems to help a little. really praying I am not getting addicted to it, but it is the only thing that I have that seems to help me even a little.
I am going in for more bloodwork today. I am hoping that they do some type of culture on me also to check for any other types of antibodies. I also requested an HIV test along with what I am getting done today, just to cover the bases.
I am continuing the Lexapro because I know that no matter what I have, I am depressed and do have anxiety so I feel that it can't do anything but help, especially since I had a good experience with it a while back.
actually leaving here in a moment for bloodwork. I hate car rides. :(
i just want a dx.
just a quick note here; ask your dr's not only to do TSH but Free T3 & Free T4's; sometimes TSH will be normal but Free's will be off and can be causing problems, I had to push my dr to have mine done even with a hypothyroid dx.
Things can slip through the cracks- even important things, so the patient really needs to be pro-active in their care- so I'd recommend you call about both the echocardiogram and the tilt table test.
The blood tests my parent had ordered I believe was after the nerve conduction and EMG proved abnormalities. As a Christian who has been pretty sheltered my whole life, I am not well versed in how people have changed what used to be acceptable words into also having meanings to do with something objectionable- that starred out word in my last post had to do with poking you with something- a neurologist used I think it was a safety pin on me before he went on to order an EMG.
It is ironic if you've never had even a TSH ran- it seems to be a pretty standard test with a lot of primary care doctors. My doctor tests both that and I think free T4. And an imbalance in thyroid function can cause a lot of havock in the body, including affecting one's emotional well being, so by all means, you want to get it checked. I don't know if you have it or not, but whether a thyroid is hyperactive or sluggish, either way, it can cause emotional imbalances- so it's worth calling to see if you have had any thyroid function tests recently. I'm so glad that you are finding help from the Lord.
The blood tests my parent had ordered I believe was after the nerve conduction and EMG proved abnormalities. As a Christian who has been pretty sheltered my whole life, I am not well versed in how people have changed what used to be acceptable words into also having meanings to do with something objectionable- that starred out word in my last post had to do with poking you with something- a neurologist used I think it was a safety pin on me before he went on to order an EMG.
It is ironic if you've never had even a TSH ran- it seems to be a pretty standard test with a lot of primary care doctors. My doctor tests both that and I think free T4. And an imbalance in thyroid function can cause a lot of havock in the body, including affecting one's emotional well being, so by all means, you want to get it checked. I don't know if you have it or not, but whether a thyroid is hyperactive or sluggish, either way, it can cause emotional imbalances- so it's worth calling to see if you have had any thyroid function tests recently. I'm so glad that you are finding help from the Lord.
For some reason the Echocardiogram slipped my mind. I don't know why. But they haven't called asking why I didn't go or why I didn't have the test done, so I am not sure they are concerned really.
I am sort of getting annoyed with my neurologist. When I am starting to think about it, I am feeling that he did not do things in a logical order at all. Maybe I'm just a stupid patient, but why didn't he order any blood tests? Why does he say he wants a tilt table test done but it has been 6 days and no one has called me. Not appropriate.
Very interesting though, I think I could have a thyroid problem. Ironically, no one has tested me for that. And alot of the symptoms that I am having match up perfectly with hyperthyroidism. I have been suffering for a month and for some reason, nobody even thought to do a thyroid test?
But hey, like you said, doctor's forget things I guess.
That is exactly what I have found also. I have stopped doing the late night thing over the past week or so because I felt like it was really messing with my sleep. With the help of Lunesta I have been going to sleep around 9:30 or 10 every night and it seems to be helping a little. I am still getting this vibration feeling though, and I have read several places that that symptom can be a very common one of hyperthyroidism/graves disease. I will definitely be giving the breathing a try tonight... That sounds like it could definitely help. And yes about the nightly bible reading! I have been doing a nightly devotional which I love and is seeming to help also.
What do you think about hyperthyroidism? Could it be?
I am sort of getting annoyed with my neurologist. When I am starting to think about it, I am feeling that he did not do things in a logical order at all. Maybe I'm just a stupid patient, but why didn't he order any blood tests? Why does he say he wants a tilt table test done but it has been 6 days and no one has called me. Not appropriate.
Very interesting though, I think I could have a thyroid problem. Ironically, no one has tested me for that. And alot of the symptoms that I am having match up perfectly with hyperthyroidism. I have been suffering for a month and for some reason, nobody even thought to do a thyroid test?
But hey, like you said, doctor's forget things I guess.
That is exactly what I have found also. I have stopped doing the late night thing over the past week or so because I felt like it was really messing with my sleep. With the help of Lunesta I have been going to sleep around 9:30 or 10 every night and it seems to be helping a little. I am still getting this vibration feeling though, and I have read several places that that symptom can be a very common one of hyperthyroidism/graves disease. I will definitely be giving the breathing a try tonight... That sounds like it could definitely help. And yes about the nightly bible reading! I have been doing a nightly devotional which I love and is seeming to help also.
What do you think about hyperthyroidism? Could it be?
Since your doctor ordered the echocardiogram, I'd say it's a good idea, so they can try to see how well the heart is functioning, look at the structures such as heart valves, that sort of thing.
I find at times looking up a lot of info to do with my medical condition can tend to get me more uptight. Yet, at the same time, I want to know things. I find if I'm doing medical related things on the computer late, even if I'm not looking up things to do with me, I have a tough time getting to sleep. Glad you are working on limiting that heightened brain stimulation the computer brings at night. Hope you enjoyed your Bible reading last night! You might also let your last meal of the day be heavy with sleep inducing tryptophan foods like turkey, for example & take some magnesium over the counter supplement (check if it's okay with doctor) with your last meal too to try to promote sleep. Sleep is VERY important, as the lack of it is probably telling you in many ways. It's also when tissue healing happens, while you sleep, I believe, so proper rest is important in many respects. You might try deep breathing- breathe in, hold it briefly, then let it out slowly- try doing it for 10 minutes while you listen to your music and see if you feel more relaxed at night.
Ordinarily, you would think the neuro would have ordered the nerve conduction and EMG study. But even if they did an exam, felt it was warranted, what with the tilt table and dysautonomia suggestion & MRIs, it might have slipped their mind, I don't know. I know sometimes doctors forget to do things. Did the neuro do anything in the office to test your sensation of the affected side versus the normal feeling side, like ***** you with something?
I find at times looking up a lot of info to do with my medical condition can tend to get me more uptight. Yet, at the same time, I want to know things. I find if I'm doing medical related things on the computer late, even if I'm not looking up things to do with me, I have a tough time getting to sleep. Glad you are working on limiting that heightened brain stimulation the computer brings at night. Hope you enjoyed your Bible reading last night! You might also let your last meal of the day be heavy with sleep inducing tryptophan foods like turkey, for example & take some magnesium over the counter supplement (check if it's okay with doctor) with your last meal too to try to promote sleep. Sleep is VERY important, as the lack of it is probably telling you in many ways. It's also when tissue healing happens, while you sleep, I believe, so proper rest is important in many respects. You might try deep breathing- breathe in, hold it briefly, then let it out slowly- try doing it for 10 minutes while you listen to your music and see if you feel more relaxed at night.
Ordinarily, you would think the neuro would have ordered the nerve conduction and EMG study. But even if they did an exam, felt it was warranted, what with the tilt table and dysautonomia suggestion & MRIs, it might have slipped their mind, I don't know. I know sometimes doctors forget to do things. Did the neuro do anything in the office to test your sensation of the affected side versus the normal feeling side, like ***** you with something?
That is what I have read also. I am just trying to decide if I should continue to take the Wellbutrin or not. I guess I need to ask my doctor's office about that. I do understand though that Wellbutrin is different from SSRI's so I was assuming that he prescribed it for a reason. It took me a little while to see a difference with the Lexapro (about two weeks to get decent) so I guess if I am going to switch to that I need to do so as quickly as possible so I can get on with further testing, as I said, the disconnected feeling is the worst part of this and has really hampered me more than anything else.
That is exactly how my mom's friend is... she said her doctor said that her stroke risk is high because she is not on any beta blockers, but she said most of the time they make her feel worse, so she just does not take them.
I am just feeling that if I needed an EMG, the nuero I am seeing now would have ordered it, you know? As I said earlier, he also wanted me to do a echocardiogram, which I think I had this week but I was feeling so awful that I forgot about the appointment. Do you think since I'm having some symptoms of tachycardia that I should get the echo done? I guess it wouldn't hurt. I just feel so awful I want to go through the least amount of tests to get me feeling okay, and then start moving toward more tests. This past week has been brutal.
Yes, I think that was my problem for a while, I was constantly looking up stuff, every single day, for most of the day. I have tried to stay off the computer during the night here lately, and I have been writing alot in a journal. I have relaxing sea music that I have on every night and yes, I am in touch with God and granted I have not been reading as I should, I will tonight for sure. I do nightly prayers also.
It just seems that I can't get any relief. And I am hoping that maybe some of my mental symptoms can ease up so I can feel at least half way capacitive.
Thank you for the support, any other comments you can provide livinginhope would be so helpful. It's so nice to have someone to talk to and get suggestions from. keep them coming!
:)
That is exactly how my mom's friend is... she said her doctor said that her stroke risk is high because she is not on any beta blockers, but she said most of the time they make her feel worse, so she just does not take them.
I am just feeling that if I needed an EMG, the nuero I am seeing now would have ordered it, you know? As I said earlier, he also wanted me to do a echocardiogram, which I think I had this week but I was feeling so awful that I forgot about the appointment. Do you think since I'm having some symptoms of tachycardia that I should get the echo done? I guess it wouldn't hurt. I just feel so awful I want to go through the least amount of tests to get me feeling okay, and then start moving toward more tests. This past week has been brutal.
Yes, I think that was my problem for a while, I was constantly looking up stuff, every single day, for most of the day. I have tried to stay off the computer during the night here lately, and I have been writing alot in a journal. I have relaxing sea music that I have on every night and yes, I am in touch with God and granted I have not been reading as I should, I will tonight for sure. I do nightly prayers also.
It just seems that I can't get any relief. And I am hoping that maybe some of my mental symptoms can ease up so I can feel at least half way capacitive.
Thank you for the support, any other comments you can provide livinginhope would be so helpful. It's so nice to have someone to talk to and get suggestions from. keep them coming!
:)
In regards to Wellbutrin, it looks like from the book that some tweaking of dosage may be needed for some people that you work on with your doctor. But since you know in the past you got help from Lexapro, I wouldn't be afraid to tell the doctor the symptoms you are still suffering, that you took Lexapro before with some help and wondering if you should switch to that medication or not. I do think you want to get as emotionally stable as you can prior to the tilt table test. It's not a huge deal, if they don't give you the medicine that lowers your blood pressure (like nitro), but since you're nervous, I'd recommend you try to get your psych medication straightened out first.
Actually, my blood pressure can be fairly low and it spikes high with standing. A cardiologist felt I'd be better off not on any blood pressure medication (though I tried more than one in the past) because he felt they would just make me feel worse. This is why you likely want to get the tilt table test before you talk to the doctor about medication for your blood pressure.
Regarding the EMG- you might get in touch with your internist and ask them to do a preliminary physical exam of your affected side & see if they think an EMG and nerve conduction study are warranted. If they do, ask if they could refer you for those tests or if they don't want to themselves, as your primary care doctor, could he/she refer you to the neurologist with a record with their findings with physical examination.
Lack of sleep can be a symptom of an anxious heart. Have you tried staying off the computer late at night, which can stimulate the brain and not promote sleep? Have you tried doing something that helps you relax, like restful music or reading a calm type book- if you're a Christian- the Bible? Having orthostatic intolerance can tend to make a person feel wired with the tachycardia, but anxiety is a separate issue. I do not tend toward the dream like state, so what medicine is useful for me may not be the same as what you might need. Every body is uniquely made and you really have to work with your psychiatrist to find what works best for you.
Actually, my blood pressure can be fairly low and it spikes high with standing. A cardiologist felt I'd be better off not on any blood pressure medication (though I tried more than one in the past) because he felt they would just make me feel worse. This is why you likely want to get the tilt table test before you talk to the doctor about medication for your blood pressure.
Regarding the EMG- you might get in touch with your internist and ask them to do a preliminary physical exam of your affected side & see if they think an EMG and nerve conduction study are warranted. If they do, ask if they could refer you for those tests or if they don't want to themselves, as your primary care doctor, could he/she refer you to the neurologist with a record with their findings with physical examination.
Lack of sleep can be a symptom of an anxious heart. Have you tried staying off the computer late at night, which can stimulate the brain and not promote sleep? Have you tried doing something that helps you relax, like restful music or reading a calm type book- if you're a Christian- the Bible? Having orthostatic intolerance can tend to make a person feel wired with the tachycardia, but anxiety is a separate issue. I do not tend toward the dream like state, so what medicine is useful for me may not be the same as what you might need. Every body is uniquely made and you really have to work with your psychiatrist to find what works best for you.
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?
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.
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.
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.
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.
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.
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.
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.
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