It sounds like you could be experiencing fasciculations, which are a kind of muscle twitch or spasm you can actually see under the skin. They can hurt, and look really frightening - they often happen in the calf of the leg, the hands, and the eyelids. There are many different factors that can trigger them, including several medications, electrolyte imbalances, vitamin deficiencies, and other medical conditions. So that could be part of what's happening. Although it can be neurological, it doesn't sound like your neurologist has been very helpful in the past, so you might have better luck talking to your other docs. You might want to look at the meds you are taking to see if this is listed as a side effect for any of them.
Thanks SO much for the wonderful information and advice, as always!
None of my medications appear to list this as a side effect, but my Asthma pump, Ventolin, can apparently cause this. However, surely that would have begun long ago, as I have been on Ventolin for a while now and am actually using it less recently than I was, since I started on the Inflammide Novolizer (Cortisone Inhaler)?
I will have to speak to my Paediatrician/Paediatric Cardiologist about it when I see him again. Unfortunately, this might be soon, as I am not feeling very well at the moment - terrible headache, muscle spasms, TERRIBLE shoulder pain (I could not even dress myself on Sunday morning for Church because of this - please don't tell me that I am getting Arthritis in my shoulders! :cry, lower backache, more fatigue than usual :!: ,sore throat, colon problems, strange sensations, sore eyes, general "yuck" feeling... :cry:
I'm really sorry for complaining, but I just feel AWFUL! There is no other way to describe it...
W.r.t. what I posted earlier on the "popping" sensations: I have now noticed that they only occur on the left side of my body - left lower calf, left thigh, left buttock (sorry! ops, left side of back (underneath the ribs), left side of neck. Although my Epilepsy is mainly Temporal Lobe, I also have Right Frontal Lobe Epilepsy, which causes weird, random arm movements in my left arm. Do you think that these "popping" sensations on the left side of my body could have anything to do with the problems in my Right Frontal Lobe?
They usually occur as isolated events, but I had a tonic-clonic (grand mal) seizure on Thursday and after the seizure, these "popping" sensations began to alternate all over the left side of my body. As soon as they stopped in my lower calf, they would start in my left buttock (sorry! ops and so on and so forth...
Marycain, you were right, as usual! I spoke to my Rheumatologist about the "popping" sensations on Wednesday and both he and my Paediatrician/Paediatric Cardiologist say that they are fasciculations. My Rheumatologist says that they're generally nothing to worry about and that a lot of people get them, but that I should mention them to my Neurologist, anyway.
W.r.t. all of these strange neurological things: suddenly, I keep losing control of my eyes and they wander hysterically all over the room! Plus, recently, I have been experiencing these very odd seizures. I get absolutely no aura, whatsoever (which is VERY unusual for me). Basically, I feel as if someone has chucked a GIGANTIC and VERY heavy ball at my chest. If I'm sitting, I get flung back in my chair and my hands go up like a Mexican wave! It always happens three times, one after the other, but at least I don't really get hurt, it's just a big shock. However, the problem comes when I'm standing or walking. I get flung into the nearest wall or surface and my body continues to smash itself into the wall/surface three times, one after the other, until I collapse down the wall and onto the floor. This is when I really hurt myself. If this continues, I'm actually going to break my shoulders! These seizures leave me with huge bruises and they REALLY hurt! Plus, they're terrifying and my consciousness is not at all impaired, making the terror even worse! :cry: I spoke to my Paediatrician/Paediatric Cardiologist about it, but he said that with strange seizures like this, I must talk to my Neurologist because this is out of his field. I am scared to talk to my Neurologist about this though because the last time that I had a weird seizure he had an absolute "freak accident" and asked me how my seizures could possibly have changed in the few weeks since I had last seen him?! If he says this again, I will say: "Look, Dr, I really don't know what is going on here either, but it's NOT psychological. To be honest, I don't particularly care what your textbook says because patients are not textbooks and sometimes, you just have to use your intuition."
Now, I keep experiencing sensations where my skin is "crawling" and it is the most awful sensation ever!
Also, a little while ago, I had this problem where I couldn't stop dropping things and I am NOT anywhere near clumsy! It was a short while after I had been diagnosed with Epilepsy, but then it went away. Now, it seems to have come back!
I just don't know what is going on here! :? :cry: Do you have any idea what could be going on?
If you are completely conscious during these episodes, they are probably not seizures, which would explain why your anti-seizure meds don't seem to be preventing them. It sounds like you might be experiencing some type of movement disorder - there are many types of movement disorders - some genetic and some acquired, like chorea. Certain types of staph infections, and illnesses like rheumatic fever, can cause an acquired chorea that lasts for weeks or months, even after the infection goes away. The problem could be neurological, or could be related to an inborn metabolic disorder like Wilson disease (where the body is unable to metabolize copper). Many metabolic diseases can cause strange neurological symptoms. So these are all things your neurologist needs to consider. If you don't seem to have much luck communicating with your neurologist, you might ask your pediatrician about a consult with someone who specializes in movement disorders, just to see what might be going on. I know these episodes must be frightening - be super careful about doing anything where you could be badly hurt, like riding a bicycle. Try to protect your head as much as you can, you might want to consider wearing a protective hat or seizure helmet until your doctors figure out what's going on. Have you tried keeping a journal of when these episodes occur, to see if there any kind of pattern, or any posible triggers like what you were doing beforehand? The more information you can provide, the better the chances your doctors can solve the problem. So I would definitely recommend keeping a log or a diary of all these incidents. I hope you are able to get some answers soon.
Thanks VERY much for the detailed information!
Yes, I always keep track of my seizures in my 'healthy diary' and on my seizure calendar.
The only thing with the seizures and impaired consciousness, is that I also experience strange Frontal Lobe seizures where I lose control of my left arm, but my consciousness is not at all impaired. These started the night before I saw my Neurologist for the first time, so I know that your Frontal Lobe can produce seizures where your consciousness is not impaired, e.g. in Myoclonic Seizures your consciousness is often preserved, which is why I think that this may be a Myoclonic seizure? My weird Frontal Lobe seizures always wake me up at exactly 02:30 a.m., which is really weird and freaky! :? Sometimes, I will have more after the first one, but the first one will always start at 02:30 a.m.! :shock:
However, I was pretty ill when these seizures started, so perhaps that's what is triggering them? Do you know if Celiac Disease could cause this? Although, I am proud to say , I haven't so much as touched gluten for three months! They know that I have an endocrine disorder, they're just trying to find it! My Gynaecologist wanted to start right at the top, so she sent off bloods to test my Pituitary Gland function and my Thyroid function, but they both came out 100%, which is great! However, most of my doctors are pretty sure that there is something wrong with my Adrenal Glands, so that's where we are heading next. If there is a problem here, could this be causing these strange movements?
Sorry, I left a word out in my initial response - i meant to say that you were probably not having "typical" seizures (tonic-clonic, which could cause the violent muscle contractions). You are perfectly correct that you can have seizures without any loss of consciousness. Some myoclonic seizures can cause the violent muscle contractions, but since they typically affect the arms and face, I'm not sure they would account for the chest pain, especially since your seizures had been well-controlled by your meds previously. Have you had repeat EEG since these new episodes started? Are there any differences in the patterns?
Adrenal gland problems would cause different symptoms depending on whether the glands were underactive, or hyperactive. Seizures would be possible, but probably not the coordination and motor problems you are describing - with underactive adrenal function, extreme weakness, nausea, etc. are very pronounced. If an endocrine order is suspected, you really need to be seen by an endocrinologist - the endocrine system is so complex that most non-specialists just don't enough familiarity to deal with it.
Keep us posted!
No, I haven't had another E.E.G. done - I've only had one done fifteen minutes before I saw my Neurologist for the first time (literally, he won't see you until you've had an E.E.G.) and then I had a Sleep Study E.E.G. one week later as a diagnostic test. Both were quite clear and the activity was fairly diffuse, coming from three different lobes, which is apparently indicative of virus/auto-immune caused Epilepsy because it's not focal.
Well, I thought that my seizures were well-controlled. The tonic-clonic ones definitely are; I've only had two since I switched to Epilim - one on the night when it was changed (my body was probably just adjusting to the new med.) and another one about two weeks ago when I was really ill and we were having a heat wave. The Frontal Lobe Seizures are also very well-controlled. However, according to my friend who sits directly behind me in Physics, I am frequently having Complex Partial Seizures. I tend to rub my face excessively during these episodes, chew things that aren't there and swallow excessively. She actually didn't know that I had Epilepsy, but spoke to me about it the other day because the last tonic-clonic seizure that I had was during Physics and I was moved to the store-room, so she wanted to know if I was alright and what had happened. She asked me what type of seizures I have and what happens and when I told her about what I do when I have Complex Partial Seizures, she said: "Oh my word! But you're doing that all the time! I've seen you, in Physics, rubbing your face all the time and chewing! I thought that you were just sucking a throat sweet or something, so I didn't say anything and I thought that you kept rubbing your face so erratically because you were agitated and hot!" I was worried that I was still having Complex Partial Seizures myself because the other day, in Physics, we were working through a complex problem on the board. The next thing I knew, the rest of the class was gathered around the work bench right at the back of the classroom and my teacher said: "Are you going to come and join us?" It freaked me out because one minute, I was working through a problem, the next minute I was sitting all alone and the problem on the board had been completed! :shock:
I have had a Myoclonic seizure before, where both of my arms shot out in a straight line alongside my body (this was the episode where my Neurologist had a "freak accident" and told me that I "read things and then (my) mind creates them!").
I may just have to go and see an Endocrinologist, but we'll see what the Gynaecologist says; she said that I might have to do that.
I'll let you know how it goes...
Thanks SO much for all of the information and keep well!
Well, you definitely need another EEG done to see if there are any changes - you might be having focal seizures now. If your neurologist isn't willing to order one, ask your rheumatologist or another one of your doctors.
Thanks very much for all of your help and information!
My Psychiatrist phoned my mother and I today to let us know that he had met with my Paediatrician/Paediatric Cardiologist and my Neurologist to discuss what has been going on and how they can help me.
I was surprised because according to my Psychiatrist, my Neurologist really likes me and actually takes me very seriously indeed and that it's not a case of him not believing me, it's that he's very concerned about me and is not quite sure exactly what is going on.
They apparently want to try a new approach to my illness because apparently they all realise that I'm "seriously ill" and want to be able to help me as best they can.
My mother and I are meeting with my Psychiatrist at 10:00 a.m. tomorrow to discuss the "new approach", so I will let you know how it goes as soon as I get back!
I must admit that my Psychiatrist has been fantastic throughout all of this! He lets my mother and I phone him whenever we need to talk and often phones to see how my mother and I are doing. He organised a meeting with my vice-headmistress and my headmistress a few weeks ago to sort out work, etc. and my illness. My mother and I are really impressed because my Psychiatrist really shows that he cares.
I am sick with Bronchitis again (I know, my mother and I can't believe it either! :shock and was sent home from school after having a gigantic Asthma attack in the middle of my History lesson. Plus, the malar rash appeared on my face in the early hours of this morning (Monday)!
I had a very bad experience with a doctor tonight, but will send you a P.M. about it as soon as I finish typing this post. :cry: