HI my name is jeff, im 27 years old now. I have experienced a certain condition for the last 12 years of my life. I would get these little dizzy spells and even tingling sensations in my legs and arms. I guess you can call them Involuntary muscle movements, but at the time i was young and wasn’t aware of what i had, i didn’t really think much of it and didn’t do much research on it then because it didn’t hamper my life in anyway. I just had to be careful and not get thrown around alot or ride swing sets or anything that can cause me to spin otherwise it would trigger the episodes. Of course during this time I found out this was not the only trigger. They would also be triggered by some form of stimulation, I would usually just over work myself or do any sort of strenuous activity, and for me that would be something simple as just playing basketball which I used to love when I was a child, now of course that my llife has taken this dreadful, many of the activities I used to do as a kid, I just can’t any more.
But the effects would last bout 5 min mostly and then i would just sit down relax and they would dissipate. But about 6 years ago, is when my condition took a turn for the worse and became something a lot more chronic and sever. This is when it all started, I would have these extremely painful episodic attacks.
The last thing I remember before these episodes escalated into something much more server was when I was doing construction work on a roof, in about 110 degrees weather and I collapsed and fell down, got real dizzy due to over working my self. Now I specifically do not know if this actual event is when these attacks really started, this is just one point in my life that I remember I had a very critical episode and before this time, I never had a condition that was that serous. At this point I still had the same condition I had 13 years ago, but after this sudden collapse, I started having more sever attacks and over time they would increase substantially to the point where I couldn’t do much of anything. I had to quit work, I had to quit school, I couldn’t drive, I have been practically bedridden for the past 6 years of my life, living on SSI.
A year after I graduated from high school, I was around 19-20 years old. My hobbies include gaming and computers, since there really is nothing else i am able to do physically besides occasionally working out in the mornings when I can, that is what I do with most of my time is work on computers, and play video games or watch movies/tv, etc to keep my mind exercised. I have always had a huge passion for computers ever since I was in middle school; it’s been something I have always loved and ultimately something that I can apply to my degree and career choice. My parents and family support me 100% and I am very happy about that, however I really feel as though I have let them down considerably in the past few years. Because of my condition, I am unable to do much there for I feel very helpless. I am starting to get into online college’s now which is a good thing, because I’ve always wanted to get an education and the online schools is the best way for me to do it because of my disability.
Now that you have heard part of my life story up to this point, I will strictly talk about my condition now and the symptoms I have that have hampered the last 6 years of my life.
The symptoms that I experience usually start either by anxiety or headaches. The triggers are actually different, sometimes my episodes are triggered by anxiety, usually just being out and about, or shopping, or being surrounding by alot of people in a restaurant, etc. At least i THINK its anxiety, I really don’t know what the feeling of anxiety is, for all I know it can be a whole another symptom that is just part of the attack and not anxiety associated but all but my doctors seem to think otherwise. The feeling I get is like tingling sensations in my legs and arms, I start to get these jittering feelings in my fingers, and I also tend to have involuntary muscle movements usually my mouth. That is what I experience in the form of anxiety, usually that is the onset, first symptom i experience before going into a full attack. It’s kind of like an aura or a prelude to the severe symptoms that follow. However this is one such aura, other times I won’t have this feeling at all and just a straight headache, in most cases when im at home, safe and I know I don’t have anything to be anxious about, I will have these headaches that develop into my “full attack” that I will explain below.
When i have a head ache, its ALWAYS in the back of my head. Not in the front, not on the sides, but at the back. I get this very sever heaviness sensation in my head, feels like my head is forcing it self-backwards and it gets so sever some times, I clench my chest and feel pain in my chest because I go into a frenzy over the severe pain. I am sure when I clench my chest at that point I’m having some form of panic attack associated with my other symptoms. Sometimes the best way to counter this is to sit in an upright position with my head tilted slightly forward and breath very calmly, turn the lights off with a little bit of noise from the tv and do not move my head at all, until the symptoms decrease, over time I start to feel very fatigued and tired and start drifting off into sleep. When I do, the headaches and the other symptoms finally start to subside to where I can lay down and finally go to sleep. But during these attacks, if I even attempt to lay down, its far worse, it can become dangerous. when I do get this symptom, I also experience very sever vertigo like symptoms, my head sways to the left and the right, actually having so many of these episodes, i finally came to a conclusion that my equilibrium is off set mostly on the left side of my head. So like if I’m sitting up in the bed, and I feel this intense sever dizziness and heaviness in the back of my head were most of the pain is stemming from and I try to swing my head to the left or right, I feel like falling further to the left then I do to the right if that makes any sense. Other symptoms that are associated with these attacks include blurred visions, nystagmus, jerky eyes, double vision, eyes rolling, Dizziness, and then of course Nasua/vomitting. When I am leaning forward in an upright position, it’s hard for me to actually move my head upwards, as the heaviness in my head is so bad that I just get more dizzy, so I have to stay in that position until it subsides. It is a very scary feeling and sometimes ive had times where i thought i would black out or even some very worse fear of death. Sometimes these episodes are less sever and i can overcome them, other times they are much harder to overcome and the symptoms seem to just linger for a while. A recent episode I had after increasing my anti-anxiety medication, I had an episode for about 11 in a half hrs that is the longest I have ever had to endure these symptoms. They usually last a few hrs or sometimes in a worst case scenario like 4-5 hrs, but never 11-12 hrs, that was just extreme.
But the headache parts of it are a recurring symptom that I get during all of my episodes. It is like a very sever vertigo sensation stemming from the back of my head like I am hung over but far worse. It isn’t’ eye strain or a drilling sensation like migraines are. Occasionally I get migraines as wel, but that is because sometimes I watch to much tv or look at computer screens but they aren’t usually associated with my other symptoms. I feel a Symptomatic Feeling of a jolt like impulse in my nerves from my legs on up to my weight. During this impulse, I feel symptoms of rolling eyes and involuntary movements and I lose focus. After wards I start to feel the effects of the dizziness and vertigo like symptoms. Depending upon the length of the nerve impulse, my symptoms are much more sever after wards. For example if I have a half second impulse, my vertigo like symptoms are manageable and not as intense, I can usually maintain it and it lasts at most for about an hr or hr in a half. But if I have several consecutive impulses or the length of the impulse is increased to 2 seconds, then I know I am in a state where my symptoms will be much more server, intense and prolonged. Usually it takes me anywhere from 4 or 5 hrs to recover during this type of an episode. I have bad eyes to as well to where I have to wear glasses. But even wearing glasses, i still feel off and on symptoms of trouble focusing on far away objects with my eyes.
I have seaked all kinds of medical care for my condition, most of my time I was taking seizure medication because my neurologist seemed to think it was seizures at first. I been taking seizure medication for about the last 2-3 years. I been on medications such as Tryleptal, tegretol, keppra, dylaten, topomax, and other medications. I went through various different tests such as EEG’s, 4 of them actually including an on call EEG which is like an EEG taken during the time of a symptomatic episode. I also did a 24 hr EEG up at OHSU in portland. I have had a MRI, MRA, and cat scan to rule out all of the possibilities of it being any physical injury to the brain such as a tumor or stroke, blood clots, etc. The only test I did not do was an orbital scan because I couldn’t afford it. Form this point, the next step was to be treated by anxiety, because my neru didn’t really understand what it was that I had, so he sent me to a physiatrist.
At this point all of my doctors, my neru, my PCP, and my physiatrist have all diagnosed me with anxiety associated with panic attacks and i know anxiety can play a large part in my condition, but i really don’t think it’s the main cause. Thirteen years ago I didn’t have anything to be anxious over and I still had similar symptoms back then just not as acute as they are now. This is something that i have been trying to find help for along long time and my doctors have put me on some anti anxiety drugs and anti depressents, such lorasapam, clonozopam and busperione. Currently right now im on Busperione and Clonozapam. However most of the side effects from most of these drugs seem to in most cases prolonge my attacks. Clonozapam seems to help the most for the time being, but as I slowly started building up a resistance to it, it hasn’t really helped as much as it used to. I think the buspare i am taking now is actually increasing my headaches to a pretty huge extent.
The doctor told me that I need to build up to a 30 mg dosage before I am considered Theruopatic. But after the initial weak of building up that dosage, I had that attack that lasted around 11 hrs, from 4:00 in the afternoon to about 3:00 AM the next day. The doctor specifically told me to start at 10mg, increase to 20, and then 30 in the course of 3 weeks so that’s what I did.
Finally I decided to go seek another neru, and i'll tell you, it was the best damn choice i ever made and something I should of done ALONG time ago. Because my current neru just was not helping me much at all, kept giving me seizure medication when i was obviously not diagnosed with seizures at this point after being through so much extensive testing. This 2nd neru that i went and saw diagnosed me with vertigo but also said that it’s not his expertise entirely, so he is sending me back up to OHSU in Portland so i can seek a NeruOtologist for further testing and diagnosing my problem. I finally went up their and he gave me a "orbital CT" a scan that i previously never had before because insurance never covered it. Well i finally took the scan, saw my specialist and he concluded that i DO NOT have an inner ear problem associated with vertigo. But he also said that you do have a vertigo problem but its "undetimined" this specialist told me that two types of vertigo can be triggered, either by the inner ear or the brain, so now he sent me on my way with my discharge papers and now i am supposed to go see my neurologist again.
So I finally saw my neru and he said i don’t know what to do for you, just like my other neru, at this point i am a complete stand still. I am still taking anti anxiety drugs, but they are only controlling it to an extent, at this point im lost. I don’t know what to do any more. I been living with this hell for the last 6 yrs and i need some other advice online from any one who has experienced the same issues i have had and maybe perhaps you know of another doctor or specialist or any other type testing that i can pursue, so i can tell my neru. Please help me out all you can, i would really appreciate it, thanks!