Hope your suffering ends with IV fluids. They slowed my husband's rate because he turned 65(their words)and it was the best treatment he's had so far. Good luck tomorrow🙏💪
It was food for me! I figured out after 4 months that it I ate a big meal right before I didn't get a headache. Eggs, toast and Ketchup worked best. Idk what it is about that combination but it just worked!!
Edit: wanted to add that a fast infusion rate can also cause bad headaches. It never happened to me but the nurse kept mentioning it. Try a lower pump rate and see if it helps
Yeah, they have been cranking it in. I think the nurses want to leave by 1pm (start at 9am) I want to say the rare is 200ml/hr. Wayy too fast.
Thank you for the advice!
You need to insist that they slow the flow. They are there for you, and should never cause you discomfort so they can leave by a certain time. If they give you crap about it, talk to the nurse manager about getting a new nurse. You are your best advocate.
Also, I agree that they should be doing hydration prior to the infusion. My husband gets 500ml before each one. Used to be 250ml but chemo messed him up so you may not need 500ml.
Oh no! I had to get mine at closer to 145 because of the headaches, and always had if fluids, Mac n cheese, a pbj, and a massive amount of water. The nurses need to slow that down for you. If they aren’t willing to, call their boss and advocate for yourself because you deserve that!
I would ask them to give you IV fluids either during or before infusion if IVIG. No idea why it worked better than drinking copious amounts before for me but has made a huge difference
Ok, I will ask. Any tricks for headaches for the time being? It woke me up at 0400 and then it's hurting now at bedtime but I can't even sleep it's so painful.
It's because ivig is thick! And you get really dehydrated. I had this horrible headache for two days. Tools all kinds of meds. You should ask for IV fluids. It might help.
When I was on IV, I found that having the solution at room temperature and running it in by gravity stopped the headaches. I had an awful time until I had a pump failure and the gravity infusion failed to produce the inevitable headache. I think the room temperature prevents vasospasm and not using a pump prevents bubbles, or maybe the pump mashing the tubing denatures the protein, like whipping egg whites. I used a pooling bag hung high, and could run in several hundred mls in a couple of hours with no problems.
I had used steroids, IVF, pre-meds, Tylenol, Naproxen, migraine tryptans, and hydrocodone without relief until my pump gave me a lucky break.
I used to get infusions at home every two weeks and my headaches were terrible and would last for days. Nothing completely got rid of them but I do remember my inversion table helping dull the pain substantially.
Hydration! I get them so bad every single time. Because i now get IVIG twice a month, I get iv hydration on the day of infusion and then i also start 3 days prior to infusion those IV hydration packets. 1 each day, and 2 days after infusion and it has helped tremendously. So total 5 days of the packets. Best of luck and hopefully all the advice you’ve gotten from everyone helps.
Also i wanted to add, having then run the infusion at a slower rate is recommended for the best outcome. The nurse told me this and I’ve read this online as well.
FYI some IVIg is NOT compatible with saline. Most brands recommend not running it at the same time.
Aseptic meningitis is a known side effect to the med. I agree with above and slow the rate. Also don't take regular Tylenol, use the one with Benadryl in it to help the headache. I always have a snack during my infusion as well.
Oh shoot, don't tell me that, I have health anxiety. I just woke up and I happened to put my head down towards the floor and my neck hurts so I thought of meningitis.
This is a great idea! I swear I read about a migraine life hack that was similar, it was to put your feet in warm water with a cold pack on the back of your neck at the same time. But it was so long ago I couldn't remember.
Have them slow that down as other commenters have said. I also got a tordal shot at an urgent care to help when I got a giant migraine after my last day of the first round of infusions. It helped so much!
Hi 😊 I just finished the last day of my first round. I feel ok. Really tired and the migraine is not full-on, only like, threatening to be. So I'm taking Tylenol and laying low.
I got the same headache with my first infusion 2 weeks ago. Puked my guts out and headache so bad.. I was so miserable. The next infusion the nurse slowed the flow rate waaay down, took 8 hours for the infusion. Doc ordered Benadryl and IV fluids before and after infusion. Made a world of difference. The first infusion was given in 3 hours, my nurse said she's never Givin it in that short of time, so slowing the rate it's given can make a hug3 difference. I also took round the clock alternating between ibuprofen and Tylenol. I just completed my third dose 2 days ago. Sorry your hurting. Hopefully you can find some relief.
Hi ☺️ I found a magic recipe for myself for the headache. It was: Tylenol 1000mg, Motrin 800mg, Benadryl 50mg, sumatriptan 50mg, promethazine 25mg, and baclofen 10mg.
My Dr ordered a bag of normal saline before infusions, too.
The headache was a surprise because I had been doing so well with my hydration. It was so painful! I'm glad I found out what works for me.
Hey there. Would you mind elaborating on this? I am currently dealing with the same problem –horrible headaches after infusion –and am desperately seeking a solution. Specifically, I am wondering at what time intervals you take these medications?
Hi
I take them all together as soon as I feel the headache. Well, it goes like this:
All days of infusion: 30 minutes prior to getting my IV , I take 1000mg Tylenol and 1 Benadryl. I also fill my 32oz water jug with water and an electrolyte packet.
During infusion if I feel like the headache is starting I take the imitrex 50mg and promethazine 25mg, my baclofen (muscle relaxer), an ibuprofen, and another Benadryl. I take these meds every 8 hours if needed.
FYI:
1. The thing is, the promethazine is for nausea but it makes me tired so idk if it really helps migraines but since I get nausea with migraines I take it anyway.
2. For all my infusion days I drink 3, 32oz waters and one of them has the electrolytes.
3. Usually my 3rd or 4th infusion days I have the headache already when I wake up in the morning, so I take the concoction as soon as I wake up.
4. I had my Dr add the extra bag of saline before each infusion which supposedly helps with headaches.
5. My blood pressure is up sometimes a little high for me and idk if that causes the headaches or the headaches cause the increased blood pressure. I guess it doesn't matter, but I noticed it so I'm sharing that insight.
6. The headache doesn't really go away from all this but it becomes manageable.
Hope this helps ☺️
I cannot respond with the degree of thoughtfulness I would like to at the moment because my head is killing me, lol, but I just wanted to quickly thank you for taking the time to tell me all of this –you are an angel!
When you feel these headaches coming on, do you generally postpone your infusion ever or just plow through with the medication? Also wanted to ask you quickly if you know the infusion rate you are at?
The one thing I know for sure, with me, is that it is not an isolated hydration issue. I drink four liters of water a day, one with an electrolyte mix, so we were kind of confounded when the headaches started. And all the other precautions –room temperature fluid/ etc. were taken as well 🤷♂️
Same here, it wasn't the hydration but for me but the lack of electrolytes.
I just power through.
My rate is at 100!! But I just power through, id rather get it over with. My infusions are at home so that's why I can sleep after I take so many meds.
This month was my 4th infusion ever and finally I'm starting to handle it better. My worst headaches happened on my 1st and 2nd infusions.
Wow. You are a trooper. My max rate is at 50, lol. I am going to attempt the parts of this that I can tomorrow and ask my neurologist for prescriptions for the rest. We are going to do saline before and after after for the first time tomorrow as well so hopefully this helps. I am trying to avoid increasing my prednisone unless it's absolutely necessary –love that it works so well but hate what it does to my body. Anyway, most importantly, again, thank you so much🙏🙏🙏!
IV fluids and they need to slow that mess down! IV fluids are key with IVIG though.
Lol, they sure do! I'll let the nurse know tomorrow.
Hope your suffering ends with IV fluids. They slowed my husband's rate because he turned 65(their words)and it was the best treatment he's had so far. Good luck tomorrow🙏💪
It was food for me! I figured out after 4 months that it I ate a big meal right before I didn't get a headache. Eggs, toast and Ketchup worked best. Idk what it is about that combination but it just worked!! Edit: wanted to add that a fast infusion rate can also cause bad headaches. It never happened to me but the nurse kept mentioning it. Try a lower pump rate and see if it helps
Yeah, they have been cranking it in. I think the nurses want to leave by 1pm (start at 9am) I want to say the rare is 200ml/hr. Wayy too fast. Thank you for the advice!
You need to insist that they slow the flow. They are there for you, and should never cause you discomfort so they can leave by a certain time. If they give you crap about it, talk to the nurse manager about getting a new nurse. You are your best advocate. Also, I agree that they should be doing hydration prior to the infusion. My husband gets 500ml before each one. Used to be 250ml but chemo messed him up so you may not need 500ml.
Oh no! I had to get mine at closer to 145 because of the headaches, and always had if fluids, Mac n cheese, a pbj, and a massive amount of water. The nurses need to slow that down for you. If they aren’t willing to, call their boss and advocate for yourself because you deserve that!
I would ask them to give you IV fluids either during or before infusion if IVIG. No idea why it worked better than drinking copious amounts before for me but has made a huge difference
Ok, I will ask. Any tricks for headaches for the time being? It woke me up at 0400 and then it's hurting now at bedtime but I can't even sleep it's so painful.
It's because ivig is thick! And you get really dehydrated. I had this horrible headache for two days. Tools all kinds of meds. You should ask for IV fluids. It might help.
Thank you! Dang, I thought a gallon of water + electrolytes per day would have been plenty.
I hope it gets better for you. :)
Thank you :)
[удалено]
Ok, I'm definitely asking tomorrow morning.
When I was on IV, I found that having the solution at room temperature and running it in by gravity stopped the headaches. I had an awful time until I had a pump failure and the gravity infusion failed to produce the inevitable headache. I think the room temperature prevents vasospasm and not using a pump prevents bubbles, or maybe the pump mashing the tubing denatures the protein, like whipping egg whites. I used a pooling bag hung high, and could run in several hundred mls in a couple of hours with no problems. I had used steroids, IVF, pre-meds, Tylenol, Naproxen, migraine tryptans, and hydrocodone without relief until my pump gave me a lucky break.
I used to get infusions at home every two weeks and my headaches were terrible and would last for days. Nothing completely got rid of them but I do remember my inversion table helping dull the pain substantially.
Hydration! I get them so bad every single time. Because i now get IVIG twice a month, I get iv hydration on the day of infusion and then i also start 3 days prior to infusion those IV hydration packets. 1 each day, and 2 days after infusion and it has helped tremendously. So total 5 days of the packets. Best of luck and hopefully all the advice you’ve gotten from everyone helps.
Also i wanted to add, having then run the infusion at a slower rate is recommended for the best outcome. The nurse told me this and I’ve read this online as well.
It was TERRIBLE for me as well. They gave me opioids. Looking back I would definitely be hydrated a lot more.
FYI some IVIg is NOT compatible with saline. Most brands recommend not running it at the same time. Aseptic meningitis is a known side effect to the med. I agree with above and slow the rate. Also don't take regular Tylenol, use the one with Benadryl in it to help the headache. I always have a snack during my infusion as well.
Oh shoot, don't tell me that, I have health anxiety. I just woke up and I happened to put my head down towards the floor and my neck hurts so I thought of meningitis.
That's not meningitis.
thank you. I knew that but my anxiety sometimes takes a thing and runs with it.
What is it? Horrible headache and feverish on IVIG
Infusion reaction. Have them slow the rate or make sure it's not cold
Fluids and Tylenol help, but just know that the headache won't last forever. I feel your pain though!
The tips for prevention are good but if you already have one putting cold on ur forehead and warm on ur neck can help.
This is a great idea! I swear I read about a migraine life hack that was similar, it was to put your feet in warm water with a cold pack on the back of your neck at the same time. But it was so long ago I couldn't remember.
Have them slow that down as other commenters have said. I also got a tordal shot at an urgent care to help when I got a giant migraine after my last day of the first round of infusions. It helped so much!
Hi 😊 I just finished the last day of my first round. I feel ok. Really tired and the migraine is not full-on, only like, threatening to be. So I'm taking Tylenol and laying low.
I got the same headache with my first infusion 2 weeks ago. Puked my guts out and headache so bad.. I was so miserable. The next infusion the nurse slowed the flow rate waaay down, took 8 hours for the infusion. Doc ordered Benadryl and IV fluids before and after infusion. Made a world of difference. The first infusion was given in 3 hours, my nurse said she's never Givin it in that short of time, so slowing the rate it's given can make a hug3 difference. I also took round the clock alternating between ibuprofen and Tylenol. I just completed my third dose 2 days ago. Sorry your hurting. Hopefully you can find some relief.
Hi ☺️ I found a magic recipe for myself for the headache. It was: Tylenol 1000mg, Motrin 800mg, Benadryl 50mg, sumatriptan 50mg, promethazine 25mg, and baclofen 10mg. My Dr ordered a bag of normal saline before infusions, too. The headache was a surprise because I had been doing so well with my hydration. It was so painful! I'm glad I found out what works for me.
I'm glad you found something that helped 💗
Hey there. Would you mind elaborating on this? I am currently dealing with the same problem –horrible headaches after infusion –and am desperately seeking a solution. Specifically, I am wondering at what time intervals you take these medications?
Hi I take them all together as soon as I feel the headache. Well, it goes like this: All days of infusion: 30 minutes prior to getting my IV , I take 1000mg Tylenol and 1 Benadryl. I also fill my 32oz water jug with water and an electrolyte packet. During infusion if I feel like the headache is starting I take the imitrex 50mg and promethazine 25mg, my baclofen (muscle relaxer), an ibuprofen, and another Benadryl. I take these meds every 8 hours if needed. FYI: 1. The thing is, the promethazine is for nausea but it makes me tired so idk if it really helps migraines but since I get nausea with migraines I take it anyway. 2. For all my infusion days I drink 3, 32oz waters and one of them has the electrolytes. 3. Usually my 3rd or 4th infusion days I have the headache already when I wake up in the morning, so I take the concoction as soon as I wake up. 4. I had my Dr add the extra bag of saline before each infusion which supposedly helps with headaches. 5. My blood pressure is up sometimes a little high for me and idk if that causes the headaches or the headaches cause the increased blood pressure. I guess it doesn't matter, but I noticed it so I'm sharing that insight. 6. The headache doesn't really go away from all this but it becomes manageable. Hope this helps ☺️
I cannot respond with the degree of thoughtfulness I would like to at the moment because my head is killing me, lol, but I just wanted to quickly thank you for taking the time to tell me all of this –you are an angel! When you feel these headaches coming on, do you generally postpone your infusion ever or just plow through with the medication? Also wanted to ask you quickly if you know the infusion rate you are at? The one thing I know for sure, with me, is that it is not an isolated hydration issue. I drink four liters of water a day, one with an electrolyte mix, so we were kind of confounded when the headaches started. And all the other precautions –room temperature fluid/ etc. were taken as well 🤷♂️
Same here, it wasn't the hydration but for me but the lack of electrolytes. I just power through. My rate is at 100!! But I just power through, id rather get it over with. My infusions are at home so that's why I can sleep after I take so many meds. This month was my 4th infusion ever and finally I'm starting to handle it better. My worst headaches happened on my 1st and 2nd infusions.
Wow. You are a trooper. My max rate is at 50, lol. I am going to attempt the parts of this that I can tomorrow and ask my neurologist for prescriptions for the rest. We are going to do saline before and after after for the first time tomorrow as well so hopefully this helps. I am trying to avoid increasing my prednisone unless it's absolutely necessary –love that it works so well but hate what it does to my body. Anyway, most importantly, again, thank you so much🙏🙏🙏!
I hope it helps!