from fatigue to the headache
AnonymousApril 1, 2009 at 2:25 pm
If you read my other post about this weird inability to do much b/c I felt like someone poured cement down my throat, you’d know that I thought I was feeling better today. Late this morning I started having a headache on the right side of my head near the temple…in the middle of my head above my ear.
It’s not a constant headache but rather a fast come and go pain. Like a squeeze and let go in my brain or something. OH and it HURTS. It happens several times a minute…
My eye hurts when it does it, too. The pain on my right side is increasing…from the elbow down.
Any thoughts ?
AnonymousApril 1, 2009 at 3:43 pm
Are you prone to migraines?
Look in the mirror and smile – do both sides go up? If not and this is not related to your disease as it is with me – then call 911 and let them decide if it’s a stroke. It’s hard to say without seeing you but you should definately check for signs of stroke before dismissing it as a side effect.
Most likely it’s that dreaded IVIg headache which can sometimes make you feel like someone hit you with a shovel and/or drilled holes in your head and poured acid inside and a thousand other analogies I think of when the pain gets horrible. If you are certain you are not having a stroke then take pain pills, drink more water, get out of the sunlight into a darker room and sit down and let your metabolism slow down a bit. If you feel better after doing these things then it sounds like either a migraine or that IVIg headache. I never had migraines before I got CIDP but I’ve had a couple now. They feel different from the meningitis (IVIg induced) headache so I can tell the difference. Mostly I get headaches from the IVIg though as side effects vary depending on the batch and a thousand other things. Remember side effects can come on at any time – headaches do not happen the day of infusion for me – usually several days later and/or after I do a lot or it’s a bright day. Same with the flu like symptoms – it isn’t always the day of infusion or the day after – sometimes its delayed a few days. And also I didn’t have any side effects from IVIg for the first six months, they came on later to varying degrees. This is a complicated disease and most of the treatments aren’t simple either. That’s why I encourage people to keep a journal of symptoms to you can come to recognize what is disease, what is treatment, and what is something new.
Hang in there dear – it may take a little while to get your IVIg schedule and dose down but hopefully you will be able to breeze through with minimal side effects. And when it gets really bad – just think of the alternative. Remember that spectacular spill you had earlier this year? 😉
AnonymousApril 1, 2009 at 6:58 pm
To your doc about this?
That phone call is cheap, and if your throat is acting this way it’s time for tests? I realize this isn’t what you want to hear, BUT…. Best to be safe than sorry.
Besides, calling on a Thursday is far better than on a Friday afternoon? Well, you know what I mean.
Gotta ask? How soon were the headaches from infusions? If 4-5 days, definitely call. All kinds of things could be going on.
Let us know how you are holding on there… no one wants to spend half a day in the ER! Only to be ‘referred’ to your neuro for an appt later!
Hope and relief soon!
AnonymousApril 1, 2009 at 7:53 pm
I would go immediately to the hospital if it is affecting only the one side it could be a stroke or an aneurysm.
When I was told at the hospital that they didn’t know what was wrong with me but not to worry it’s not a stroke because it’s affecting both sides.
I had a co-worker die because of headaches and problem with her eyes. She was waiting for her appointment to get her eyes checked the following week but she died before that. Don’t want to scare you but this is very serious don’t wait. It’s better to be safe then sorry.
AnonymousApril 2, 2009 at 8:01 am
Sorry if I led anyone to believe I am having a stroke. I know that’s not the case.
Last evening, I went to Connor’s baseball practice and I was fine the whole time. After getting home and showering, it started again. It’s a squeezing, not constant, almost like an ice cream headache. It comes and goes about every three to six minutes.
Today so far I have been awake for an hour and a half and it’s only happened once. I am calling my dr as soon as they open just to let him know about it b/c it IS strange.
I would have to say that I dont think it’s the IVIG headache b/c I’ve had that before, too. I was down big time with that …on the couch with a bottle of pain pills and a whole lot of tears.
I’ll keep you posted…but thanks so much for worrying…I dont think there’s a need to tho.
have a great thursday everyone…Sue, good luck today.
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