Hi!
I am wondering if anyone has had the horror that is Trigeminal Neuralgia! I have only just begun my IVIG infusions 5 weeks ago and am suffering through this unbearable pain...Is it possible to have a flare when the infusions are just beginning? Any suggestions on how to address this pain?
Thank you in advance for your support...It's nice not doing this alone
May I have a bit more information, please?
The trigeminal neuralgia has affected the right side of my face presenting with unbearable pain trough my teeth gums, cheek & palette. I have had numbness and tingling for years, however the severe pain has been with me for the past 3 weeks. I am wondering if this misery represents nerve regeneration or if it is possible for the infusions to cause a flare up.
I have had 2 really bad bouts with it. Once in the hospital 4 years ago and the explosive pain encompassed my entire head. The doctor said it was not cidp. Then the next day he said after researching, it is rare occurrence, but happens. I was given mega doses of naproxen which worked. The pain lasted maybe 12 hours but felt like forever. The second time was a few months ago. It was mostly left side. I went for emergency dental visit. I thought for sure it was a problem with a tooth because it presented differently than the first time. It was mainly on my left side and after some time went to my right. The pain didn't subside with naproxen, but it did help some. The dentist couldn't find any problem with my teeth. That time lasted 2 days. I can't image 3 weeks. I don't think it is related to ivig infusions, at least for me. If you haven't tried a naproxen type medicine for it yet, I would ask your doctor to be safe. It's worth a try. I hope you get relief very soon.
Thank you so much for your input! I am almost afraid to say this, however, today I have been pain free!! I have never experienced the intensity of pain that this has delivered...Lots of Advil & Tylenol and meditating to keep calm. Do you have muscle spasms in your legs with the CIDP?
mabes said:
I have had 2 really bad bouts with it. Once in the hospital 4 years ago and the explosive pain encompassed my entire head. The doctor said it was not cidp. Then the next day he said after researching, it is rare occurrence, but happens. I was given mega doses of naproxen which worked. The pain lasted maybe 12 hours but felt like forever. The second time was a few months ago. It was mostly left side. I went for emergency dental visit. I thought for sure it was a problem with a tooth because it presented differently than the first time. It was mainly on my left side and after some time went to my right. The pain didn't subside with naproxen, but it did help some. The dentist couldn't find any problem with my teeth. That time lasted 2 days. I can't image 3 weeks. I don't think it is related to ivig infusions, at least for me. If you haven't tried a naproxen type medicine for it yet, I would ask your doctor to be safe. It's worth a try. I hope you get relief very soon.
Yes I did have cramping but not so much since the cidp has gotten into control. Now when I have mild cramping I take potassium or magnesium which help. Bananas help believe it or not. I am so glad you are feeling better. The head pain was the worst pain I ever had and I hope that neither of us experience that again.
I just feel soooo happy that the pain has stopped for now!...The neuro explained that when nerves are sick that they irritate the muscles...I can be found walking on cold floors during the night...I will take that over the other pain any time!
mabes said:
Yes I did have cramping but not so much since the cidp has gotten into control. Now when I have mild cramping I take potassium or magnesium which help. Bananas help believe it or not. I am so glad you are feeling better. The head pain was the worst pain I ever had and I hope that neither of us experience that again.