Since your neuro suggested dysautonomia or some cardiac problem, did he refer you to a cardiologist/electrophysiologist for testing of his theory/ to get it ruled out? Since you are having weird feelig on your lower left extremity, did the neuro order a nerve conduction study and EMG to test it? Feeling of unreality can be associated with panic attack, as can shaking and not sitting still. It sounds like you may want to check back with the psychiatrist and tell them what symptoms you are still experiencing and see if they want to make any medication adjustment.
This may seem kind of "out there" but have you ever looked into Aspartame poisening? Do you drink a lot of diet drinks or eat/chew a lot of sugar free gum/products? A lot of those symptoms can mimic MS and a lot of other things...Like i said it may be a stretch but it could be worth a try to check out?
No, he did not. But I think that is a very good idea. I just went for a pretty much full body MRI yesterday so now playing the waiting game, but at my wits end!! Waking up every morning and feeling so weak and tired and not like myself has really taken a toll. I think I'm going to see a psyche if this MRI doesn't show anything. Maybe also look into a cardiologist. Any other thoughts appreciated!
I actually never drink diet sodas or use artificial sugars. That's a really good thought though... any thing else yall can think of would be super helpful! Just looking for some kind of answer!
Well, the cardiologist or a medical center specializing in dysautonomia, such as Vanderbilt University medical center- the doctor who suggested you might have dysautonomia should be willing to back up his potential theory with a referral.
And you might ask about an EMG with nerve conduction study if a neurologist's physical exam proves any difference in sensation in the left foot you are concerned about having a rubbery sensation as compared to the right.
Since the Lexapro seemed to help, regardless, getting back with the psychiatrist to see if you need to adjust medication since it isn't working as well as you might hope for I think would be something worth booking an appointment about.
Other thoughts about your foot/leg would be- are you stressing the left leg/foot more in some way, by some action you are doing with that leg? Or is there something about your bone structure that might be putting more stress on that leg (ie one leg longer than the other) or might you have something like a flat foot on that side versus the other that a podiatrist might be able to get you an orthotic for?
Let us know how the MRI comes out?
HI! So sorry to hear of your problems. I just wanted to say that I have had weird episodes of dysautonomia since I was about 20 something...but only every few years. I got a terrible case of pneumonia in 2006 from a spore in the desert. This is when my terrible situation started with not feeling well, dizzy and just sick. And I did get that heavy feeling too. And car rides at the time were so scary. They made me feel so anxious because it would make me either black out or feel like I was drunk. It took them 2 years to figure out my thyroid was part of the problem, which helped to get that toxic thing out. Then my issues continued even after that. I was just finally diagnosed a few weeks ago with autonomic neuropathy. But it was a long wait. But make sure the pneumonia is treated. Sometimes infections can make the dysautonomia worse or even cause it to show it's ugly self. Hang in there. I hope you get answers soon.
Hi. Reading your story was basically like reading my own. I struggled with the same thing for 10 yrs! Finally, this past year, after seeing every kind of specialist, having every kind of test, and having them all be 'fine', I was referred to the University of Toledo where Dr. Blaire Grubb specializes in these kinds of things. I was finally diagnosed with postural orthostatic tachycardia syndrome (POTS for short) and neurocardiogenic syncope (NCS for short). Your symptoms sound exactly like mine! The only bad news is a lot of Dr's have no idea this even exists. Look into it. Hang in there. Praying all goes well and you can get back to life. I know it stinks doesn't it?!? God bless =)
Hello everyone, just wanted to give you an update as to what has gone on over the past few days.
I heard back from my neurologist's office and they informed me that the MRI results were normal, both spine and brain. They told me they want to have a tilt table test done to test for dysautonomia, but I am not sure I am going to go through with it.
I found a really good internal medicine doc who was recommended by a friend. He informed me that there could be many things that could be causing my symptoms, and that he was going to work with the neurologist when the results from the MRI came back. I told him that I really don't have any fluctuations in my blood pressure, and that it's been being high, but never low really. I have continued to have the feelings of "woah" and kind of like passing out, but I'm beginning to wonder now if that feeling is just coming from the general weakness that I'm feeling.
I have been very weak over the last few days. Very weak. Also have been experiencing pain in spine, around mid back and also lower. Last night I had trouble getting any sleep at all. I took some melotonin, but I think it made me worse, I kept waking up, feeling like I was even more in a dream than I already had been.
I told the internal medicine doctor about the dreamy feeling that I'm having, like things are foreign and different feeling, that I just don't feel like myself. Like everything I touch, see and talk about seems un-normal. He prescribed me Wellbutrin to see if it would help lift the brain fog. He also gave me Lunesta, but I've been scared to take it because I don't know if it will make me feel weirder than I am already feeling.
I also have felt like my breathing isn't normal. I'm not really having any trouble breathing, but it just seems like my breaths aren't really satisfying, if that makes any sense at all. Like when I take a deep breath, it feels kind of funny. Also when I take a deep breath it seems like I get a tightness in my lower back.
The weakness on the left side of my body continues, which really also makes me not want to have the tilt table test. I am having constant, routine stopping symptoms, not spells. Even though I do get the light headed feeling sometimes, the feelings of weakness on the left side of my body and the weakness in general (feeling like I have no energy) have been constant for a month. I have noticed also that I am having a strange vibration feeling in my body, mostly in my leg. It is very subtle, but it feels very strange. Also continue to have the fullness feeling on my left side lower abdomen. I am thinking that I want to have some type of nerve study done... but my nuero wants this stupid tilt table test done. Thinking I might see if the internal medicine doc who was AWESOME (listened so well, seemed really intrigued/interested in my symptoms and how I was feeling, don't you love doctors like that?) to see maybe if he can order something like that.
I am so scared that it's going to get worse and worse and turn into something life threatening if I don't find it soon. I can tell that something, even though I don't know what, is wrong with my body.
Would there be some other kind of autonomic nerve disorder or disease that could be causing some of my symptoms?
I am so frustrated. I am feeling worse and worse everyday. I am hoping that the Wellbutrin will kick in in the next few days and at least give my mind some ease.
If you only consent to do the part of the tilt table test without the medicine (like nitroglycerine) part, it wouldn't be that big of a deal. But, if at home, you aren't having dramatic changes in pulse lying to standing, I'd report those numbers to your neurologist. I would think he would have to have some kind of basis for ordering the tilt table- did they do orthostatic blood pressures and pulses on you in the office?
Did the neuro you saw do any cursory physical exam to see if you are having a sensory problem in your left leg/side? If so, is he/she just wanting to do the tilt table first, rule out/confirm a form of orthostatic intolerance and then do an EMG/nerve conduction study on that left side?
I was having the same symptoms you described and the tilt table test confirmed orthostatic hypotension. I am taking Florinef and Midodrine for it and they have made all the difference. I think the tilt table test would be worth it. If nothing else it would rule it out.
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??
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.
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.
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.
I have weakness and numbness on my right side and extreme fatigue.
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.
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.
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.
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?
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.
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!
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?
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?
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.
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.