IVIG headache

No, if it appears 3 days later it is highly unlikely related to the IVIG. IVIG headache from my husband’s discription is like a tight band around his head and stiffness in the neck and shoulders usually. And much worst than a normal headache concerning pain intensity.
Laurel

we ALWAYS get our headaches 3-4 days post treatment. Not in the mood to start a thread, but neuro suggested topomax. I feel there are too many sideaffects, although he says not at low dose for headaches. It also says not for children! Topomax is a preentative for headaches, keeps them from happening, but I wonder if that is true if it is ivig induced ie aseptic meningitis. Immitrex or treximet also are options, I am going to ask about them instead, as they are used when the headache is present. Meaning you use as needed as opposed to topomax 2 times a day. Maybe if he wasn’t a kid, I would think differently?

Back to the headache topic you started, our treatment headaches can start 3-4 days post and LAST for up to 4 days. That has actually been our most debilitating part of the stupid cidp. The ivig does wonders, but it is wreaking havoc on us.

Symptoms of these headaches include, neck shoulder stiffness, as well as entire spine. Very nauseated sometimes accompanied with vommiting. Occasionally a low grade fever. Severe light sensitivity and the necessity to lie still in complete darkness. This could last up to 4 days.

In those days when I had IVIG 2 days per month I sometimes got the headaches up to two weeks later. During the 5, or so, months I had IVIG 3 days every 3 weeks I sometimes got the headache up to 2.5 weeks later. Sometimes the headache, while low level, lasts for a week.

Any proof it’s the IVIG? Nope, how could I prove that?

In the years when I didn’t get IVIG I usually didn’t get headaches.

When I drink enough water during and between IVIG treatment events and, I mean every day, day after day, I don’t get headaches.

yes the headache can start quite a few days after IVIG.

That is why I always medicate with Tylenol and Benadryl for at least 2-3 days AFTER IVIG seems to help a lot.

Also staying well hydrated makes a big difference as well.

Rhonda

Yes running it at 100 instead of 300 should make a hgue difference.

Some people have to go even slower.

I am glad your headache didn’t last as long.

Cheers,
Rhonda

I too was concerned about Emily taking the Motrin with IVIG knowing the risks of liver issues. Emily’s neuro pointed out that taking Motrin for 2 days a week will not cause liver damage. The liver damage comes from continual long term use (YEARS of taking it every single day around the clock) or from an over dose. He also noted it’s better to take the Motrin than to deal with the possibility of a reaction (the headaches).

I’m glad you did better this time.

Kelly

won’t speed up infusions to over 275-280! Just because of that possible reaction. I can attest that IF it’s under the 275-280 rate? Everythings’ fine.
My own aseptic meningitis was due to both a bad batch [in a hospital setting] AND an upping of the rate to over 290.
The headache was soo bad? Driving alone home was a true adventure! The rest of that week was sheer head pain.
Kelly I agree too, that at times? Better the devils you know that those you don’t want! These are choices we all have to make each month and it’s all to get well and get by!
Good luck and heart to all who go thru this all. If someone had asked us a decade ago? IF this could happen? Our reactions would have been incredulous. And, at times, we still are. At the enorminity of what all we face every day to do, is that simple ‘Just getting by!’ So simple, yet complicated!
Heart and good things to all!

Yes I do get headaches the days after. A lot of drinking and panadol xtra (Paracetamol and coffeini) helps

Agree with Catherina.. I would also suggest the same. I think headache is very common after IVIG but it goes away at a later date.. i mean it is not a permanent feature.

Had my IVIG last week and upon coming home in the evening a terrible headache started which has not left me since (came home saturday and it’s sunday evening now). Also, they had some ‘findings’ after the neural conduction test and decided to put me on prezolon and neurontin. I hate the salt and sugar free. Can I use fructose and Lo Salt in stead??

My daughter gets migraine headaches 3 days after like clock work. WE have tried everything and nothing has worked except she started taking prednisone 15.mg on that day and that has helped a little. We have tried slowing down rate and benadryl and hydration and nothing helps. She also gets fever and neck pain. Same for both Gammaguard and Gammunex. Trying to get sub-q approved to no avail.

Just posted this under ivig reactions:
I, too experienced terrible headaches. After 3 months with unrelenting headaches/naseau/vomiting – and a 25 pound weight loss, neurologist changed brand from Gamenex to Gamagard. I get weekly infusions and get infused at a starting rate of 50 and only recently (after 8 months) moved to 55, then 60 rate. I receive 25 grams now, down from 30 grams. Benadryl before during and after infusion; benadryl at night until day 4 post ivig (or until the inflamation in lymph nodes goes down). Tylenol for post ivig malaise and aches. Migraine meds (now FROVA) at night after infusion, typically one or two tablets within 24 hours of infusion. I also get severe neck pain and lower back pain.

Headaches are now manageable. Push back hard if you are experiencing headaches – call your pharmacy to get their input; consult with your GP for moral support. Let your neurologist know you are not satisfied. When I put my findings in writing to my neurologist, with a copy to my GP and pharmacy (ivig supplier) I finally got some action. Hope this helps.

My husband is the one with CIDP. He usually gest a headache if the infusion is too fast which for him is above 120. His neurologist also has him taking Benadryl one hour before the infusion starts to help with side effects.

Just now recovering from a 36-hour long killer headache that started a bit more than 24 hours after my last infusion. Came complete with nausea, aches, low-grade fever. I often feel a little flu-ish after a treatment, but not like this! I have been so fortunate to date with IVIG. But I really don’t want to go through that again.

Meningitis is inflammation of the thin tissue that surrounds the brain and spinal cord, called the meninges. There are several types of meningitis.

ah, ha, a Eureka moment of my own. I just returned from a doctors’ visit up yonder in Minnesota.

My recall of what they told me goes like this-

Me: I get headaches.
Them: Do you take NSAIDs?

Me: Yes.
Them. Beware, you may build up both an addiction and a lessening of effectiveness. Try not to take them everyday.
Them: Hydrate. You have to hydrate. Drink more water.

Me: OK, What about the headache?
Them: Where is it located?
Me: Everywhere.

The specialist: It is very common for the IVIG to cause inflammation of the meninges. Drink more water.