Per Dr. Druey's suggestion, I am sharing my experience using medical cannabis to help with the terrible migraine side effects of IVIG. CBD hemp/products do nothing for me. Seems that THC cannabis must have a compound that helps. Strains with the dominant terpene “myrcene” are my personal preference. I am using cannabis now because I wasn’t experiencing this "hangover" feeling with infusions while on medical cannabis (for PTSD 2018-2019). Then I stopped because therapy helped me, but then the infusion side effects started. I was bed ridden for a day or two, sometimes 3, with a terrible migraine which induced nausea. This went on for over 2 years. I live in Maryland (US) where medical cannabis is available and I don't have to take drug tests for employment, so this may not be an option for you. I've almost tried everything besides steroids, which I understand is something that helps. I happened to be on steroids for a severe poison ivy allergic reaction during one of my infusions and I still had the "hangover". I lowered my dose to 1.5g/kg  shortly before Covid shutdown and I still had post-infusion misery. So I put two and two together, sort of speak. With cannabis my side effects went from a 10 to a 1. No more migraines. Just a slight sense of pressure in my head that comes and goes, but no pain. Still experience a little fatigue too, but that could just be the cannabis. I can function during the days after my infusion now though. Sure I'm a little "high", but that is much better than what I was experiencing.
 

For the past several months, cannabis is in my system during my infusions and for the 3 or sometimes week after. It is not something I use in case of a headache. I use cannabis as a preventative treatment, meaning I don't wait to feel the side effects of my infusions. My IVIG dosage is 2g/kg every 4 weeks and sometimes I do a post-infusion hydration with 500ml of fluid, depending on if I have time because ithe infusions take 4-5 hours. I'm not sure if the hydration does anything? It couldn't hurt, I guess? Ultimately, ya gotta do what's right for you. If you have any specific questions I'll be happy to answer the best I can.

- Kevin aka Dude

Kevin

I am very interested in learning more about what you are using for CBD hemp/products as I too struggle with post treatment migraines. I have tried CBD oil but have not found much relief from it. What exactly are you taking? 

Lisa 

Hi Lisa,

CBD hemp was something I tried because CBD is a compound that is in cannabis. Plus it's technically legal in the USA, and it doesn't involve registering with my state's Medical Marijuana Commision and paying $50 for a patient ID + $200 to get "certified". So in MD, if you're not a veteran because they get discounts, it costs $250 upfront before you can even purchase medical cannabis. Anyways, the CBD didn't help with my post-infusion migraines. So I thought, well it must be something about the THC, not CBD, in cannabis that somehow works. Now I am a registered cannabis patient. I've talked to my hematologist about it and he suggested that maybe it might open the blood vessels to relieve pressure from all of the IVIG/fluid. To answer your question about what I'm taking, I've vaped, smoked, tried concentrates like RSO, and have eaten "edibles". They've all worked. Everyone's preference and tolerance is different, so I don't think it's worth me telling you the exact amount I take/use and such. And because there's many strains of cannabis, and with different amounts of THC and CBD. Like I've said, I like strains with the dominant terpene "myrcene" because of it's sedative physical relief. I hope I've answered your question in some capacity.

You might consider getting 0.75 or 1 g/kg every two weeks, instead of 1.5 or 2 g/kg every four weeks. 

We have a number of patients who have done this splitting up to minimize some side effect or another.

My son has been on ivig since 2010. When he had his first episode.  He battled migraines since day 1 and we tried many treatments for it . Our conclusion to fix this problem was tapper slowly from the prednisone he takes, only during infusions. He would always just stop takimg them on day 2 when ivig was over on a fri . Monday, without fail came the migraine. We found startingnon day 1 with 3 mg of prednisone, 2nd day 2.5mg. and so on . Cutting back by .5mg was the answer . As long as he does that hes perfect . Misses one . Hes done for . We always thought it was ivig but it seems to be the prednisone 

It has been awhile since I first created this discussion. I want to follow up with my experiences in treating my post infusion pain with cannabis. First off, it's not 100% effective. In fact, my last infusion I started getting a headache after the first day of infusions. And post infusion, for lack of better words, sucked. But the cannabis did help me. I would not be able to get out of bed without it. I've also found that distillate vape does really not help. Good old flower smoking has had the best results for me. Edibles work for me too, but they take much longer to do their work because of how the body needs to digest and metabolize it. 
 

The only thing I think I haven't been able to try is being able to get my infusions every two weeks instead of four. I cannot do that because of my insurance. Wish I could at least try it...

"The only thing I think I haven't been able to try is being able to get my infusions every two weeks instead of four. I cannot do that because of my insurance."

This is the first I ever hear of this.  I don't see why you can't, because your insurance company should not care about whether you get your IVIG in one sitting or in two, since the cost to them is the same.

Have your anchor doctor get insurance pre-approval for one half-dose every 2 weeks rather than a full dose every 4 weeks.  If they deny it, ask Dr. Druey to provide a supportive letter that your doctor can forward to your insurance company.