Aa
Help with severe headache after IVIG!
Hi,
I just started Gammunex- C on Wednesday for Lyme disease and CVID. I had tried one previous dose of Gammaguard in April but since I had such a severe headache my doctor had wanted me to go to an infusion clinic instead of doing home infusions. While waiting for insurance to cover the infusion nursing the prior authorization for the Gammaguard ran out. Since my doctor was having a hard time getting any IVIG approved he tried for multiple brands and I noticed I had approval still for Gammunex-C.
I get my meds from CVS specialty pharmacy and since I have a port the nurse, pharmacist and nurse manager all agreed that I should be doing 10% Gammaguard once a month at a dose of 20 grams for 2 hours and 45 minutes.
My home health nurse came and started the infusion. After about an hour I started feeling like I was going to black out. I was shaky, dizzy and week. My nurse stopped the infusion put everything in the fridge and said she would come back in two days to restart. I went to bed and woke up feeling fine. When my nurse came back she restarted the infusion. I finished in about an hour with no problems.
The next morning I woke up feeling like someone was repeatedly hitting me in the head with an axe. I tried to just deal with it but by nighttime my eyes were glued shut, I was vomiting profusely and screaming in pain. The hospital gave me steroids, fluids, Toradol, Benadryl and Reglan. It took about two days for the headache to go away.
I told my doc this and they agreed I needed to be in an infusion center. Since I didn't think my insurance would approve this my doctor said I could do it in the office for the time being. The nurse told me that I needed to be properly hydrated and to take some meds beforehand.
On Wednesday I woke up before the infusion and took some Tylenol. I had been drinking extra water( probably not as much as I could have)and they gave me 500 Mls of Saline. I took 5mls of Benadryl. I am taking a lot of pain meds and was worried about side effects. I was supposed to do two bottles of Gammunex-C. Each bottle was 10% and my doctor had planned to do each bottle for two hours. Since my pump was programmed wrong we had to use a regular roller clamp IV. It ended up taking four hours for one 10% bottle.
During the infusion I got terrible waves of fatigue but that's about all that happened. About an hour after I had finished I began getting the headache. I have severe sinusitis and constant migraines so I get pretty bad daily migraines. This felt a little worse than my normal migraines. I take Relpax and Propranolol daily for the pain. It is definitely helping but after a few hours the IVIG headache comes right back. I definitely have an increase in all my usual symptoms and one minute I feel fine than the next I feel like I'm about to die.
I'm okay with everything side effect wise except the killer headaches. When will this go away? If anyone could advise me of anything I need to do or could have done differently I would greatly appreciate it. I was thinking of asking my doctor for a Decadron shot before my next infusion but because of the Lyme I am really really nervous about it. Thank you so much for reading and sorry about the long post.
Diane
I just started Gammunex- C on Wednesday for Lyme disease and CVID. I had tried one previous dose of Gammaguard in April but since I had such a severe headache my doctor had wanted me to go to an infusion clinic instead of doing home infusions. While waiting for insurance to cover the infusion nursing the prior authorization for the Gammaguard ran out. Since my doctor was having a hard time getting any IVIG approved he tried for multiple brands and I noticed I had approval still for Gammunex-C.
I get my meds from CVS specialty pharmacy and since I have a port the nurse, pharmacist and nurse manager all agreed that I should be doing 10% Gammaguard once a month at a dose of 20 grams for 2 hours and 45 minutes.
My home health nurse came and started the infusion. After about an hour I started feeling like I was going to black out. I was shaky, dizzy and week. My nurse stopped the infusion put everything in the fridge and said she would come back in two days to restart. I went to bed and woke up feeling fine. When my nurse came back she restarted the infusion. I finished in about an hour with no problems.
The next morning I woke up feeling like someone was repeatedly hitting me in the head with an axe. I tried to just deal with it but by nighttime my eyes were glued shut, I was vomiting profusely and screaming in pain. The hospital gave me steroids, fluids, Toradol, Benadryl and Reglan. It took about two days for the headache to go away.
I told my doc this and they agreed I needed to be in an infusion center. Since I didn't think my insurance would approve this my doctor said I could do it in the office for the time being. The nurse told me that I needed to be properly hydrated and to take some meds beforehand.
On Wednesday I woke up before the infusion and took some Tylenol. I had been drinking extra water( probably not as much as I could have)and they gave me 500 Mls of Saline. I took 5mls of Benadryl. I am taking a lot of pain meds and was worried about side effects. I was supposed to do two bottles of Gammunex-C. Each bottle was 10% and my doctor had planned to do each bottle for two hours. Since my pump was programmed wrong we had to use a regular roller clamp IV. It ended up taking four hours for one 10% bottle.
During the infusion I got terrible waves of fatigue but that's about all that happened. About an hour after I had finished I began getting the headache. I have severe sinusitis and constant migraines so I get pretty bad daily migraines. This felt a little worse than my normal migraines. I take Relpax and Propranolol daily for the pain. It is definitely helping but after a few hours the IVIG headache comes right back. I definitely have an increase in all my usual symptoms and one minute I feel fine than the next I feel like I'm about to die.
I'm okay with everything side effect wise except the killer headaches. When will this go away? If anyone could advise me of anything I need to do or could have done differently I would greatly appreciate it. I was thinking of asking my doctor for a Decadron shot before my next infusion but because of the Lyme I am really really nervous about it. Thank you so much for reading and sorry about the long post.
Diane
Have an Answer?
You are reading content posted in the Autoimmune Disorders Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
