Discussions By Condition: I cannot get a diagnosis.

Could this be migraine related???

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: Anonymous
  • May 12, 2008
  • 10:20 PM

I am a 21 y/o female and have little medical history other than the symptoms I am about to ask about.

Since I was 14 or so, I have been passing out on what can be quite a regular basis. I saw a paediatrician up until the age of 17 who ran tests such as EEGs, ECGs (as well as 24hr EEGs and ECGs), Tilt testing and an MRI. There has been nothing shown on any of these tests, however I have never had an 'episode' while having the tests either.

I developed an eating disorder (bulimia) in the year after this all started in response to the loss of control that I suffered as a result of these episodes and was treated by a great team.

I was referred to a neurologist about 4 years ago, who was given witness accounts and test results as well as the information regarding the eating disorder. Before he even saw me, he had replied to the referring Dr stating that he thought these were pseudoseizures, and that was one of the first things he actually said to me when he first met me. This diagnosis has remained, with the reckoning that once the eating disorder had been treated, the passing out should stop. He failed to recognise that the eating disorder was not part of the 'traumatic childhood' he assumes I had to develop an eating disorder, and therefore susceptible to psychogenic seizures. This has not been the case - I had a very happy childhood, am doing very well for myself now, and feel that there is definitely no problem with my mental health. As far as he is aware, these episodes occur without warning as that is what I told him, but I do recognise when they are going to occur now, and reckon I did then, but was living in denial due to my age and being in high school, etc.

On days that it happens, I often wake up feeling as though I am hungover, even though I rarely drink now, and will struggle to get up, and then have to sit in the shower rather than stand. Sometimes, this will not start when I wake up, but comes on throughout the day, usually leading to me passing out later in the evening.

About 30mins before I pass out, I lose the ability to hear properly, everything is more of a distant drone. People can be talking to me, but I don't hear what they are saying, it is more like a background noise, sometimes I am unable to hear at all. About 10-15mins later, my vision goes a bit grey and it can look like I am looking at a strip light or something as it seems to flicker a lot. This can even lead to vision loss at times, usually starting with my lateral vision. I get tingling in my hands, which can work its way up my arms, quite slowly though. I become very nauseous and can even vomit at times.

I will then fall unconscious to the floor. I am told that there are no convulsive movements, but that my eyes will roll, and there is usually very fast eyelid flickering. This lasts maybe 5-15 mins. When I come round, I will be very tired and still quite nauseous. More often than not, I will lose consciousness again for a few minutes.

After coming round, I usually have severe pain in the occipital region with photophobia and phonophobia, which I assume to be a migraine. Once the pain starts, I am unlikely to pass out again, and usually take to bed then anyway.

I have been diagnosed with migraines in the past, but they were classical migraines. I very rarely have a classical migraine now, but can have one of these 'episodes' and migraines as often as once or twice a week sometimes. The migraine can last for hours, and usually leaves me exhausted for the following couple of days, and usually have to resort to wearing glasses full-time rather than just for reading during these days.

I was hoping that someone can help, or tell me if they have had similar problems and whether they had an answer for this as it is looking as though it may affect my future as I may not be able to continue with further training until this is resolved. On top of that, I also have had some quite bad injuries, and have been lucky that other than scars, there will be no lasting damage. Does this sound like pseudoseizures to anyone else, or am I right to try to get the migraine thing looked at? I know I was silly to lie about my symptoms when I was younger, but there is nothing I can do about that now!

I have not had contact with the neurologist again, and he seems to be unwilling to review my case, and other neurologists feel it is inappropriate for them to get involved and tred on his toes. I am very unhappy as I do not believe that he has got this right, and nobody will help either confirm or prove wrong this diagnosis.

Thanks in advance!

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  • First off, you have absolutely every right to see another neurologist and no doctor should ever refuse you that right. If nothing else, tell them that you're seeking out a second opinion and that should be fine. Don't ever let them tell you that you don't have the absolute right to decide which doctor you want to see!I'm not really sure if this will help, but when I read your story it sounded a little bit familiar to something I went through when I was between the ages of 16 and 19. Yours sounds *much* worse than mine, but the way you described the headaches, the process of passing out, and then the weird changes in sensory perception, it sounded similar to what I went through, mine just wasn't anywhere near as bad.I went through a long period where - like you - I was told I was either suffering from really bad migraines or perhaps some form of seizure. But my Mom has had migraines her whole life and my brother has a rare seizure disorder, so I know what those look like and I know how they've described their experiences and it just didn't fit with what I was going through. Several times, I woke up with that hungover feeling you described and my sensory perception would go all wonky. In my case, my eyes went all weird - my pupils would either dilate and stay that way, or contract *really* tightly and never dilate. Lights would seem brighter and harder, sounds were either too loud or not there, and everything hurt. My neurologist I was seeing was so convinced they were migraines that he kind of gave up on trying to treat me. So I decided to get a second opinion and ended up going to a headache clinic. Thankfully I found a doctor there who was older, more experienced, and open to other possibilities. And within a few weeks I had a diagnosis.Now I don't want to say that this is definitely or even possibly what's happening to you, cause like I said, your case is about a million times worse than mine was. But I just wanna throw this out here as an idea, maybe something to take to a new neurologist to have considered and tested. It's real easy to test for, it's just it's a different kind of test than doctors normally run and a lot of neurologists normally just don't think to run it. So that said, what I turned out to have was a thing called an Arnold-Chiari Malformation. It's a condition that you're born with and it's basically a malformation at the base of the skull. What happens is, your brain stem is larger than it should be, and when it protrudes into the foramen magnum - the bone that connects your skull to your spine - it fills up too much space. In a normal person, the brain stem fits perfectly into the foramen magnum with enough space between it and the bone to allow for easy flow of cerebral spinal fluid. When the brain stem is too large (or the foramen magnum too small), that flow is impaired and pressure can build up in the skull.There are lots of varying degrees of Arnold-Chiari Malformations. Mine is very, very slight, so my symptoms aren't as bad as they could be. But the more that flow of cerebral spinal fluid is impaired, the worse your symptoms are. But they all present with similar symptoms, it's just a matter of varying degrees of severity. But the common symptoms of it are migraine-like headaches, cognitive dysfunction, variations of sensory perception, passing out, and so on. Some people, if they have it bad enough, they can even have seizures. The test to see if you have an Arnold-Chiari Malformation is quite simple and not invasive at all. It's just a specific type of MRI, called a CSF Flow Study. They inject some contrast that allows them to see the flow of cerebral spinal fluid. As they watch it, they can see how much fluid is able to pass around the brain stem, which will show any kind of blockage at all. Then they can measure the space and/or blockage to see if you have an Arnold-Chiari Malformation, and if so, how bad it is. It's not invasive at all and is very, very accurate. It's just like having a regular MRI, it's just that it looks at another part of the brain. It's not all that rare or difficult, it's just that not many doctors think of ordering it. Not sure why, but there you go. So yeah. I'm not sure if that's really what you have or not, and I'm certainly not qualified enough to say one way or another. But I would recommend bringing this up with a new neurologist and asking to have a CSF Flow Study done just to be safe. It's an easy test, so why not? Then if it turns out you do have it, I'd be happy to talk to you about what I've done to help with mine. If it's bad enough there is a surgical option that can help quite a bit. But there are lots of other things you can do too to avoid surgery and still help treat the symptoms. Now that I've been diagnosed, I can do a lot to take care of myself and I haven't passed out since. I'd be happy to see if there's anything else I can do to help you if that turns out to be the case for you.Good luck!!
    HeatherShow 19 Replies Flag this Response
  • Could also be this:"About 600 million people around the world, including some 28 million Americans, get migraine headaches. Physicians and researchers suspect a link between migraines and a particular heart defect in some people.The defect is called a patent foramen ovale or PFO. A remnant of fetal development, a PFO is a hole between the two upper chambers of the heart and is generally smaller than a pencil eraser. In about 25 percent of people, the hole stays partially open after birth, leaving a PFO, a tiny, flap covered passage between the atria." From: http://www.medicalnewstoday.com/articles/60698.php
    aquila 1263 Replies Flag this Response
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