Does anyone feel like there's something/things they have done to successfully avoid getting a headache after IV/IG? Sometimes I have it worse than other times and a couple times, no headache at all. I try to drink a lot, rest well, and avoid noisy or stressful situations. The times I didn't have a headache it also seemed like I went 7 hrs instead 5/6. It will be hard tomorrow thought because my new nurse forgot to schedule me and has me close to overbooked with someone else. ERRR. Oh well, we're only human!
unfortunately the headaches are actually irritation of the meninges (membrane around the brain) so they are not typical headaches which explains why most people find they can not find anything to counter the headache as OTC drugs wont touch it.
I've been told by my neurologist that anything stronger would take time to work itself into the body to have any effect and probably take longer to start working then the headaches last so basically its better to deal with the problem head on.
In addition the headaches are a random side effects some people will get them every time they have IVIg others will sometimes get them and some people will never get them.
Thank you for the info! Since I started home treatment I've been forgetting which pre-meds they give me in the hospital. Do you know which is best? My nurse said she thought maybe tylenol.
bill2503 said:
unfortunately the headaches are actually irritation of the meninges (membrane around the brain) so they are not typical headaches which explains why most people find they can not find anything to counter the headache as OTC drugs wont touch it.
I've been told by my neurologist that anything stronger would take time to work itself into the body to have any effect and probably take longer to start working then the headaches last so basically its better to deal with the problem head on.
In addition the headaches are a random side effects some people will get them every time they have IVIg others will sometimes get them and some people will never get them.
Rachel - If you need to infuse over 7 hours to ~hopefully~ avoid a headache; then the nurses should LISTEN to you and do it that way. I have to remind my nurses every time to infuse over 4 hours; they keep wanting to do 3. It gets tiring being your own patient advocate, but we have to be. Hope today did not bring a headache.
Thank you Cheryl! No headache so far. Usually comes the night of the second day and into the 3rd but I'll keep my fingers crossed. I might trying splitting it up into two days next time. Thanks for the support.
Cheryl Anna said:
Rachel - If you need to infuse over 7 hours to ~hopefully~ avoid a headache; then the nurses should LISTEN to you and do it that way. I have to remind my nurses every time to infuse over 4 hours; they keep wanting to do 3. It gets tiring being your own patient advocate, but we have to be. Hope today did not bring a headache.
Take tylen
Take Tylenol before each infusion, drink a lot of liquids, and have the nurse infuse slow.
Hi Rachel -
Slower infusion is the answer, but you may still get headaches. My neurologist and internist attack a headache aggressively so it doesn't get out of control. If it's severe they go straight for Vicodin, but usually the max dose of Tylenol works.
Best of luck with it!
Today is 2nd day after IVIG & I was smacked hard this AM - headache and nausea. Took a Vicodin & a Zofran & slept the morning away. The nurse told me to be proactive & take the Zofran for a few days; guess I should have last night. Motrin doesn't touch this headache for me.
I had IVIG about 2 weeks ago and after the 2nd day and into the 3rd I had a major headache. I took Tylenol and used a heat pad around the back of my neck which seemed to help, but it didn't take care of it completely as the headache lingered for about 3 days afterwards.
Stay strong
I've found the only thing that takes the headache away is Vicodin.
Last night I had a very high temperature, shivering, headache and a stuffy, but also running nose. I thought flu, but my daughter informed me the reaction to IVIG has varied over the years, from last infusion day, day after, 2 days after, 3 days and now 6 days after, and sometimes no symptoms at all, which has been the case over the last months. (took my eye off the ball)
Thinking it was flu I had, I took 2 sachets of Beechams cold and flu, blackcurrant , in a pint of hot water. Whithin 2 hours I was back to normal. It contains paracetamol, vitamin C and phenylephrine.
I think it is worth trying…it worked for me.
Regards
Happy
bill2503 said:
unfortunately the headaches are actually irritation of the meninges (membrane around the brain) so they are not typical headaches which explains why most people find they can not find anything to counter the headache as OTC drugs wont touch it.
I've been told by my neurologist that anything stronger would take time to work itself into the body to have any effect and probably take longer to start working then the headaches last so basically its better to deal with the problem head on.
In addition the headaches are a random side effects some people will get them every time they have IVIg others will sometimes get them and some people will never get them.
Hey I’ve had Ivig for the first time. Alittle over 8 months ago . The first day I was fine . Second day fine , third day I’ve had a headache just like you that was out of this world . Lasting around 73 hours . I’m currently getting the iv steroids which is 1g. Which still have me alittle out of it . But I rather this to avoid the headache’s. and to avoid the oral steroids which can cause weight gain … Will keep u updated on how it goes
Drink LOTS of water, before, during, and after your treatments. It really does help!!
I start drinking water two days before infusion day, and continuously during the infusion. I keep the infusion rate low and take about 7 hours total. Afterwards, I run a bag of saline which helps too. Anytime I’ve changed this,I’ve gotten a headache but if I stick to this it works pretty well. If I slack up on drinking water continuously during the infusion I get dizzy and lightheaded towards the end. A nurse told me that Ivig is like oil in your veins, so the more water you drink, the more it helps to move through your system. Good luck!
I've been taking Tylenol 4's ever since I've been on IVIG and it seems to work fine for me, of course I sleep more than usual, but oh well. Gary