Lack of reality and heavyness

[tmmontgomery]

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!

[LivingInHope]

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?  

[tmmontgomery]

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!

:)

[LivingInHope]

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.

[tmmontgomery]

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?

[LivingInHope]

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.

[tmmontgomery]

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.