I've seen psychiatrists and doctors about this already and none of them seem to have any ideas, so maybe someone somewhere on the internet can give me a hand. The most frustrating part is describing precisely what it is I am feeling, as there are no words.. I'll have a go though, maybe someone can relate.
A bit of background about my mental health: I have AS, ADD and temporal lobe epilepsy. I don't have an official diagnosis for an anxiety disorder but the psychiatrist said I probably have one. I was in the middle of seeing a therapist for depression when it first happened.
This has been happening since I was 18 so over the past 6 years. It is episodic and often accompanies a feeling of faintness/dizziness. It first started after smoking weed whilst on SSRIs (it was one of my first times smoking weed). I haven't smoked weed in two years now and when I did smoke again following the incident there didn't seem to be any correlation, it seemed to happen pretty randomly. So onto the actual feeling. It usually starts in my lips, though sometimes in my hands. It feels like I can't move them properly. The sense of touch is distorted; it feels a little numbed with waves of feeling. A good way to describe it would be to imagine the nerves transmitting the feeling of touch; imagine that sensation is 'jumping' down the nerve in stutters rather than smoothly. Like a loose light bulb flickering on and off. Within seconds it affects my entire body. I have no awareness of the position of my limbs in relation to my body. I can't perform dextrous actions with my hands like doing up buttons and I feel like I'm moving through treacle. I have no sense of balance and have to lie down. I get tremors in my hands or feet and its hard for me to structure sentences. A lot of the time it's accompanied by tinnitus. It's really frightening and sometimes I'll end up hyperventilating and having a full panic attack. I think low blood pressure is associated as I do suffer from that and sometimes I feel like I'm going to black out. People will remark on how pale I look. It lasts for about 10 minutes or so before I'm back to normal. The strange thing is, following the initial episode I can mentally bring about another one just by remembering that feeling. This can last for a week or so afterwards, in which I might get repeated bad episodes. When I'm feeling normal and haven't had an episode for a while, I can't bring the feeling back just by remembering. I can't even precisely remember the feeling.
The reason I'm writing this now is because I had a really bad one yesterday whilst driving; I had to stop driving immediately because there was no way I could turn the steering wheel or operate the pedals. I started really panicking, I couldn't breathe hardly and I was going to pass out. Thankfully my boyfriend quickly swapped places with me and drove us home - the entire journey home I had my hands twisted around the seat belt and couldn't stop chewing my lips or relax, and everything was feeling bizarre like I described. It was the second episode of the day, the earlier one was during a lecture and I had to leave. My friends wanted me to go straight to A&E but I've had experience with the doctors before relating to this. They thought it was my temporal lobe epilepsy at first, maybe a partial seizure or something. I had a 24-hour EEG fitted but they picked up nothing (I also mentioned that I haven't had a seizure in about 15 years). All they did was attribute it to my depression and say I just had anxiety. I am fairly certain that it's a mental condition and not something neurological or physical. The frustrating thing is, despite my best efforts I can't find anything on any symptom list that describes precisely that feeling. Even my descriptions here haven't fully captured it. The only one thing I can think it might be related to is AIWS - I did get this a lot when I was a kid and occasionally I get the big/small delusions along with each episode, though not severely. All I want is to give it a name and see that it's not just me in the entire world who gets this feeling. I'm a biology student and I'd like to actually research about the pathophysiology - that would give me some solace next time it happens.
30 Apr 2013, 5:58 am
