New Daily Persistent Headache Support Group

Hi all,

I am in hospital and soon to start, if I decide to go ahead with it, an 8-day lidocaine infusion. The side effects sound pretty awful and the neurologist is pretty non-committal as to the possibility of success. Anyone any good news on this one?

Thanks

Bill

My daughter tried it last December, but she only made it to the fifth day because of nausea, vomiting, and dizziness. Her autonomic system went haywire.

Are you in Philly doing this?

I wish you the best with it. I heard some great success stories from the nurses. I really hope it helps you, Bill.

Thanks. I don't really know whether to go through with it. The neurologist does not seem confident that it will help and its ten days in hospital. Will see I guess. Thanks again for the good wishes.

Bill

I have tried lidocaine and ketamine and also lidocaine on it's own. Unfortunately neither helped, making my headache worse within 8-12 hours. Everyone is very different though and I know some people have found it beneficial. Enbee in this support group has also had both infusions with some benefit. I am sure she will comment on this post when she has time.

I have not tried this and have not heard of a great rate of success with this or any treatment. But if it was offered to me, I would do it. Everyone reacts differently. I'd probably consider a more benign or short lasting infusion treatment first though. I haven't been offered the chance for any infusions, in patient treatment, etc. I would want to know if the side effects got too bad, how long after they unplugged it would they start to subside. Often they can predict side effects such as nausea and give you something before they even start the treatment (and continue the medication) to try to knock it out before it starts.

If you have any medication preferences for nausea, be sure to let them know (for example, I know I react badly to Reglan, so I wouldn't let them give me that). Good luck! Even if this doesn't work, at least its something you have tried. Actually, if a doctor was confident that it (or anything else) would help, I wouldn't be confident in them. Responses to treatments are unpredictable. However, the continued quest keeps me going. Best wishes.

I have done a straight lidocaine infusion (8 days) and one mixed with ketamine (13 days). Both times I got some benefit, even if it was only short term. Prior to each infusion I'd been having 10/10 pain for weeks on end so even getting that pain level broken up a bit was useful.

With the straight lidocaine I had a slight reduction in pain (probably down to about a 7/10) and with the ketamine combo I was pain free for a period of day or so. Both times my pain came back but it wasn't as bad as before I started the infusion.

With the lidocaine I didn't have too many bad side effects, mostly some dizziness but nothing too severe. The only real issue was that I had some absence seizures which were attributed to the infusion. It only happened during the infusion and once the day after when I was at home and it was a bit scary but apparently not dangerous. My neuro wasn't concerned about them but I did find it a little off-putting. I was on a heap of meds at the time though so it could have been a bad med interaction or something. It's never happened since.

Otherwise the only real issue is that it is pretty boring being in hospital for that long. It's certainly worth trying though if you need to give something a go.

Happy to answer any questions you have.

I had a Lidocaine infusion done last year february, during the whole procedure, I didn't feel any relief, in fact, there were days that my pain got worse. The side effets weent too bad, like enbee, I felt dizzy, my nausea wasn't too bad, but I was taking zofran at the time anyway. The funny thing was, after finishing the treatment, and going home, I THEN started to feel some relief! I got about a week's worth of relief out of it, I went down to a 3,4/10. My neuro had me continue with the drug mexiletine, which is a lidocaine derivetive, in the hope that I will continue to have that good relief, but alas, that did not happen, after one week of good luck, I was back up to my high levels of pain again. I feel it was worth it though, I got to do things in that week that I hadn't in my whole time before. I would do it over again if I was given the chance. Good luck to you!

As far as infusions go, the only two that have helped my NDPH and migraine are methylprednisolone and DHE. Both involve a five day hospital stay, but it was worth it at the time.

Many thanks for all the advice and comments. I am due to start tomorrow but am yet to decide whether to do so. My headache is quite low on the pain scale in recent weeks (typical NDPH tightness, pressure, bilteral pain). The neuro and the nurses have been emphasizing the possible psychiatric side effects, including paranoia, agitation and hallucinations, which sound pretty frightening. Another possible side-effect is tinnitus. As I already have this (and it drives me mad!!), I am concerned that the infusion could make things worse. The neuro said there is a 30-50% chance of some positive outcome. Anyway, thanks again to you all.

Bill

HI Bill,

did you decide to go ahead with the infusion? If so, how is it going?