MJ, thank you for asking.
I was hoping for input on the fevers when I asked the question back in August, but it turned into a "Your husband is a junkie" thread.
Well, he's detoxed now and on nothing other than the ibuprofen he takes at the onset of a fever attack and protonix. So it isn't technically serotonin syndrome - though at this point, his new neuro isn't ruling out that his hypothalamus is totally dysfunctioning and causing something like that.
I'd still be interested to know about others - but it's damn hard to stick the thermometer in someone's ear when they can't stop moving in the thick of the throes of an attack. But this is different, because he heats up and sweats with a cluster attack - but not like this.
And the data indicate they're not related (we knew it anyway). He can get an attack during one of the fevers, and he can get an attack and then have a fever start, but he has most attacks without this fever event. He usually ends up with an attack at some point during a fever event, but that's just because he has so many attacks every day, and the fever events take about 3 hours round trip (up to 5), and he averages 7 cluster attacks a day.
And while the time he has these things is all over the place, they are "clumping" in late afternoon or early, early AM. He actually managed to have a cluster attack AND one of these fever events at the first visit to the new Neuro at Montefiore. Doc spent three hours with him. He would have sent him to the emergency room, but we already had MRIs and various bloodwork (including aerobic and anaerobic cultures that had "percolated" for six weeks) done.
It usually starts with him shivering and almost always, as he heats up, he starts really shaking uncontrollably. He feels freezing to the touch at first though sweat is pouring off of him. By now, his fever is usually 101- 102- something. It ratchets up by a degree about every 20 minutes. It usually peaks at around 103.8 or 103.9, though as you can see, it does spike up into the 104s pretty frequently. By then he's heating up the whole house and feels burning hot to the touch. When it passes that, it shoots to 107 - we've never measured it inbetween (except on the way down), and we take his temp every 5 - 10 minutes, so those last spikes are very quick when they happen.
When he starts shaking, even though he shouldn't, I let him wrap a blanket around himself and make him take some ibuprofen. But I get cool towels on his forehead, head (he shaved his head hoping it would help dispel the heat), and back of neck. I have to change them almost as soon as I put them on because he heats them up so quick. Docs have said not to use ice. The 102 - spike up - cool back down to 102 usually takes 1 to 1 1/2 hours. Within 3 hours (on average) he's usually back down to 96-something. His baseline temp averages 97.4.
The first time this happened we didn't take his temp. It was a year ago, and I posted about it here. We suspected serotonin syndrome. But it seemed to be an isolated event. Then this last August, it started happening pretty regularly. It'll go for 3 - 4 days, then nothing for a few days. Then fever one day, then nothing for two days. It's just all over the place. In August, he was no longer under the care of a neuro, (his last one gave up and referred him to pain management). His GP did what he could to figure out the cause, but to no avail. I don't know why it didn't occur to us to see an Infectious Disease doc, but at that time, Gary was more focused on getting off the narcotics (which he did in Sep). Saw a new neuro who said he didn't know how to treat Gary, but was willing to co-ordinate with experts and his GP, and referred him to Montefiore.
He's been on standard antibiotics in pretty high doses, but that didn't affect the fevers.
We're not happy with the ID doc he's been seeing. He's got a new one on the 26th. In the meantime, Montefiore neuro wants a high resolution MRI (MRI in Sep showed nothing, but was only 0.3 tesla - standard for an open MRI). He went just this last Thurs for the high res MRI, but they kept him waiting for an hour and he was in a cluster attack by the time they called him. It's been rescheduled for this Wed - the first appointment.
In the meantime, in the past two weeks the fever events have changed, in that now sometimes, not every time, his extremities (fingers, toes and nose) turn white and are FREEZING cold. So far, all they've done is give him (another) EKG and an EEG, but nothing abnormal shows up. He's had numerous blood workups done, and his bodily functions examined, and nothing shows up.
Phil pointed out it sounds like it could be meningitis. But if it's bacterial, the only symptom he presents is the fevers, and his blood work didn't show elevated levels of c-reactive protein, so my guess is that's why the GP or the first ID doc didn't do a spinal to check. Plus I assume the swelling of the menenges (sp?) would show up on even a 0.3 tesla MRI. ?? He did have viral meningitis as a kid, and we've mentioned this on every form he's filled out.
Sorry for the long answer.
Laurie
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