Another sleepless night, sitting up at the computer shaking slightly and with loud ringing and dizziness on my left side. Well, I don’t think I helped myself any. I’m a moderate beer drinker but after the reaction to the flu shot I quit alcohol altogether – I just felt too sick to even want any. Last night I went to a movie and dinner with a friend and had one beer. It seems like it has made the tremors worse but I could be imagining it. I have “good” nights and bad nights; the night before last, for instance, I got nearly 8 hours of sleep but that’s rare. It seems like the symptoms vanish when I’m asleep or at least I don’t notice them. Do you think the alcohol made the condition notably worse or is it just coincidence and the normal ups and downs of my condition? I have had really bad nights without any alcohol but the tremors seemed to be abating (somewhat) recently but now they have come back.
The tinnitus is wearing me down with high pitched squealing in my left side and no way to get relief. It’s hard to explain but the noise is more inside my head than in my ears. When I put my fingers in my ears or put a headset on, my hearing seems perfectly normal but the squealing seems like it’s above my ears inside my head, not really coming from my ears or outside. I also have waves of dizziness that seem to be associated with the tinnitus, mainly on the left side (the flu shot side). The tremors and chills are worse on the left side too. I don’t lose my balance but I just feel sort of nauseous-dizzy in waves. Both the chills/tremors/paresthesia and the tinnitus started about 9 hours after the flu shot. They could have started sooner but I was asleep and noticed them when I awoke. Could demyelination occur so quickly and also cause the tinnitus so quickly? What is the mechanism for the tinnitus (arising so fast) and will it get better if I have demyelination and it can be treated? Decades ago I used to take a lot of aspirin when I had a cold and sometimes I noticed a type of temporary tinnitus but it was of a different caliber, more like roaring white noise, not high-pitched squealing.
My doctor said she ordered brain, c-spine and lower spine imaging. I don’t know why it would take two hours. Anyway, she said I could skip the lower spine for now and just take the two other scans separately. I must have complained so much she put “urgent” on the order but after three days radiology hasn’t called me back (I’ve called them twice) so I don’t know when I will get the scans with Thanksgiving coming up. She said that after I know the scan dates I should make an appointment with neurology. Of the three scans she ordered, which do you think is the most important?
Do you think the antibodies developed by the flu shot are attacking my body? It couldn’t have been those antibodies originally because I read it takes two weeks for them to develop, so I don’t know what in my immune system is and has been attacking my nerves. I wish there were something to make my immune system stop attacking me.

The saga continues. Friday my symptoms were really bad and I was genuinely scared so I emailed my doctor that I was shaking (from chills) and scared. I was hoping she would prescribe something but she told me to go to the ED. Well, not my preference but I went. I think the doctor thought I could get tested quickly there but as the ED doctor put it, “Your doctor didn’t know what else to do so she sent you here.” That’s about right… Anyway, our ED isn’t exactly fast so I spent a total of 8 hours there. I was shaking like a leaf the first 6 hours but after lying on the bed for a while under two warm blankets the shivering started to abate. The ED doctor brought in a neurologist, who did a clinical exam. I have now had 3 clinical exams since the flu shot, all of which were normal. We discussed a spinal tap but the two doctors (ED and neurologist) and I agreed that it wasn’t a good idea at this time. I begged them to give me anything so the ED doctor prescribed Ativan to help me sleep. I had told her that my symptoms were so bad I couldn’t sleep much anymore (true). I have now taken Ativan for 3 nights right before bedtime and it has indeed helped me sleep, though it doesn’t do anything for my symptoms – I think it just knocks me out.

My PCP emailed me and wanted to know what my temperature is during my chill attacks. On my first visit to her the nurse took it and the ED took it and both times it was about 97 so she has those records. I also took my own temperature at home during the initial chill attacks and it was 97. (She’s still hung up on my having an infection even though every test I’ve had has been normal.)

Anyway, I sent her three messages, two in response to her queries (what is your temperature, when are the MRI’s scheduled and do you want some Xanax) and an additional one. I have reproduced them below. I would particularly appreciate your comments regarding message #3. Her only response was to message #1, to which she said that she thinks I don’t have an infection.

Message 1 of 3. Most of my life my normal temperature has been 98.6. It seems to be decreasing somewhat as I age. I have been taking my temperature during the worst of the chills: it is always around 97. This morning I have had very mild “paresthesia” symptoms – I feel almost normal except that the tinnitus is bad - and it’s back up to 98. I was shaking like a leaf in the ED but after lying down under two warm blankets the chills started to subside. I didn’t put much significance in the 1 degree temperature drop during chills but who knows? Maybe my slightly lower body temperature enhances the chills? MRI’s scheduled for first week in December.

Message 2 of 3. The doctors gave me twenty 0.5 mg Ativan pills. I took one Friday night before bed and it helped me sleep. I took another Saturday night with the same effect. I wasn’t going to take any Sunday night but the symptoms (paresthesia & tinnitus) were so intense I couldn’t fall asleep so I finally gave up and took one at midnight. After that I slept well. Ativan does not affect my symptoms but the sleep seems beneficial.

Message 3 of 3. I spent 8 hours in ED Friday being very inactive. When I went there my symptoms were really bad – I was scared. On Saturday morning when I awoke, to my surprise it was like someone had turned a knob and dialed down the volume on all of my symptoms – both the tinnitus and the chills/tremors. The tinnitus was barely noticeable and the paresthesia was very mild – like today. That condition persisted most of Saturday but the symptoms started coming back again Saturday evening. (I worked out at the gym Saturday afternoon.) Sunday the symptoms were back much stronger again and today, while the chills/tremors are down, the tinnitus is back up. Very weird – Saturday the tinnitus was at a very low level for most of the day – hardly even noticeable.

The saga continues. Friday my symptoms were really bad and I was genuinely scared so I emailed my doctor that I was shaking (from chills) and scared. I was hoping she would prescribe something but she told me to go to the ED. Well, not my preference but I went. I think the doctor thought I could get tested quickly there but as the ED doctor put it, “Your doctor didn’t know what else to do so she sent you here.” That’s about right… Anyway, our ED isn’t exactly fast so I spent a total of 8 hours there. I was shaking like a leaf the first 6 hours but after lying on the bed for a while under two warm blankets the shivering started to abate. The ED doctor brought in a neurologist, who did a clinical exam. I have now had 3 clinical exams since the flu shot, all of which were normal. We discussed a spinal tap but the two doctors (ED and neurologist) and I agreed that it wasn’t a good idea at this time. I begged them to give me anything so the ED doctor prescribed Ativan to help me sleep. I had told her that my symptoms were so bad I couldn’t sleep much anymore (true). I have now taken Ativan for 3 nights right before bedtime and it has indeed helped me sleep, though it doesn’t do anything for my symptoms – I think it just knocks me out.

My PCP emailed me and wanted to know what my temperature is during my chill attacks. On my first visit to her the nurse took it and the ED took it and both times it was about 97 so she has those records. I also took my own temperature at home during the initial chill attacks and it was 97. (She’s still hung up on my having an infection even though every test I’ve had has been normal.)

Anyway, I sent her three messages, two in response to her queries (what is your temperature, when are the MRI’s scheduled and do you want some Xanax) and an additional one. I have reproduced them below. I would particularly appreciate your comments regarding message #3. Her only response was to message #1, to which she said that she thinks I don’t have an infection.

Message 1 of 3. Most of my life my normal temperature has been 98.6. It seems to be decreasing somewhat as I age. I have been taking my temperature during the worst of the chills: it is always around 97. This morning I have had very mild “paresthesia” symptoms – I feel almost normal except that the tinnitus is bad - and it’s back up to 98. I was shaking like a leaf in the ED but after lying down under two warm blankets the chills started to subside. I didn’t put much significance in the 1 degree temperature drop during chills but who knows? Maybe my slightly lower body temperature enhances the chills? MRI’s scheduled for first week in December.

Message 2 of 3. The doctors gave me twenty 0.5 mg Ativan pills. I took one Friday night before bed and it helped me sleep. I took another Saturday night with the same effect. I wasn’t going to take any Sunday night but the symptoms (paresthesia & tinnitus) were so intense I couldn’t fall asleep so I finally gave up and took one at midnight. After that I slept well. Ativan does not affect my symptoms but the sleep seems beneficial.

Message 3 of 3. I spent 8 hours in ED Friday being very inactive. When I went there my symptoms were really bad – I was scared. On Saturday morning when I awoke, to my surprise it was like someone had turned a knob and dialed down the volume on all of my symptoms – both the tinnitus and the chills/tremors. The tinnitus was barely noticeable and the paresthesia was very mild – like today. That condition persisted most of Saturday but the symptoms started coming back again Saturday evening. (I worked out at the gym Saturday afternoon.) Sunday the symptoms were back much stronger again and today, while the chills/tremors are down, the tinnitus is back up. Very weird – Saturday the tinnitus was at a very low level for most of the day – hardly even noticeable.