Hi my name is Roald. I've had seizures since a MVA in 2013. Right temp nocturnal seizures which progress to generalized tonic clonic which then continue to cluster. Uncontrolled at this time.
I got a new bed last week since I thought I could use something better/newer to hopefully improve my sleep. I have also had a sleep study show that I have an average of 27 spontaneous arousals per hour or only sleep 2-3 min at a time all night long. This is most likely due to 5-7 factured vertebrae from the MVA which the disrupted sleep then directly causes my seizures. Anyway I did a bunch of research about natural materials and what are the best types of beds etc and I got a bed off Amazon called "elemental sleep." It seemed to be what I was looking for, was on sale, made in USA and all natural etc. Everything seemed good till we opened it and it expanded. I have become extremely sensitive to some smells and although this was not a "bad" smell it affected me very badly. It is like a soapy/flowery type smell and although it isn't like a fowl smell or chemical smell at all it was like I was allergic to it. I feel like it is a smell I have smelled before and just can't recall what it is also kind of annoying. At first we thought we could air it out and open the windows but within a short time I was having another person take all of my clothes out of the room and anything else that could absorb the smell. It wasn't long before I started having full blown aura symptoms, my muscles tensing up uncontrollably, strong taste in my mouth (usually metallic but this time mixed with the bed taste) vision changes, my mood worsened, personality and behavior changes, light head and before I know it I was fumbling with a Clonazepam trying to open it and take it before things developed into seizures. (Who thought putting anti-convulsants in difficult to open foil/blister packaging was a good idea for a rescue Rx for epileptics?) I had to sleep in a separate room and could still smell the bed at night with the door closed and window open. I took a shower the next morning and went into the mts for 3 hours and I could still smell it on my fingers on the ride back. I could smell it on the front door before opening it when we got back. I could instantly taste it in my mouth and in the muscles in my jaw and neck when I stepped inside even though I had all the windows in the house open all night and all day while we were gone... 3 more days airing out later and I still can't go into my bedroom, the windows have been open the whole time and the smell has dissipated but I can still smell it plain as day and can't spend more than a few seconds in that room without getting a headache. My mom agreed that it did smell pretty strong for the first day or so but she didn't think it was a bad smell and now thinks she could sleep on it since it has aired out a couple days though we are still airing it out more. I decided to get rid of it because I could never use it even if it aired out 99.9% I could still wake up with headaches or seizures from that .1% who knows. Sometimes I feel like odors like that even in minute amounts that aren't strong enough to notice with my nose, are still strong enough to be noticed by my brain and contribute to symptoms. My tongue probably can't tell the difference between regular coffee and decaf, but my brain certainly can. I also don't want to give it to my son for when I go sit with him and read books etc. I don't want it to have an affect on me let alone chance having any bad effects on him even though it is supposed to be natural and not off-gas anything harmful. I did get a refund so I'm not out the $ but this still has been stressful and frustrating to have something that I was ready to rest better in and relax almost cause me to have seizures and make me sleep in another room for the last 3, now 4 days. My mom said she wouldn't believe the types of seizures I have if she hadn't seen them for herself and she said she wouldn't have believed me having this kind of reaction from a smell like that so quickly if she wasn't here to see it. She has been visiting which has been a huge help with everything. That said I was ready for, and needed, a new bed last week and it has just become a complicated mess. Even though sleep deprivation or disrupted sleep is a known cause of seizure activity or at least a contributing factor, drs don't really seem to have much advice at all -even sleep study drs are more focused on trying to sell their CPAP machines and Rx's. Now I am trying to figure out what to do next and need your help/advice.
That is my story, here is my question: What kind of bed do you recommend? Any advice would be great!