I don’t know what to do. I’m 17 and have had a migraine that has not ended for 3 years. I’ve tried everything. I’ve tried a number of preventatives, rescues, and anti depressants. I’ve done acupuncture and biofeedback. I’ve gone to dozens of doctors. If had three rounds of Botox. I have gone to the emergency room and had cocktails and steroids and DHE. I don’t know what to do. I am actively seeking help from a number of doctors currently. I need help.
Thank you for reaching out and being part of the Migraine.com discussion forum. We’re happy you’ve found us.
I am sorry you are having such a difficult time, I understand how frustrating that it.I’m going to give you a lot of information, take your time reading it and let me know if you have questions.
Try not to lose hope as there are over 100 medications that can be used to treat migraine disease. Something to keep in mind when we start new medications is that it can take up to 90 days before we see an improvement in our migraine frequency and severity. Also during this time potential side effects may lessen. This can be frustrating because we just want the pain to end. The thing is if we don’t give each medication a fair trial, we’ll never know which medication would have been the one to work. Does that make sense? Here is information on migraine prevention medications; https://migraine.com/blog/migraine-preventives-start/.
I’m happy to hear you are seeking out help from other doctors, but I did want to mention doctors. The thing is neurologists may be find doctors but have a hard time being experts in one area because they treat so many disorders such as stroke, epilepsy, multiple sclerosis, Parkinson’s and others. Migraine/headache experts are true experts and are board certified in headache medicine which is different than being certified in neurology. These expert doctors mostly treat migraine disease and headache disorders. When you get a minute take a look at this article about how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/
I’d also like to mention medication overuse headache or moh which was formerly called rebound. Moh can occur if we take pain medications and/or migraine medications, whether they are over-the-counter or prescription more than two to three days a week. If we are in an moh cycle our migraine attacks will be more difficult to treat and we can end up in a daily cycle of endless pain that too is hard to break. We have a number of articles on moh you can read here; https://migraine.com/?s=moh&submit=Go.
I’m not sure I’m on the right forum for this, but I was trying to find one on “bad experience with Botox” and couldn’t find one.
Anyway, I have posted on here before to add to some conversations, but now I’m asking for some answers or if anyone experienced what I am currently going through.
I had Botox for migraines exactly one month ago yesterday by a Board Certified neurologist who specializes in migraines and stroke. A side note: I’ve had Botox 3 other times in 20 yrs. for migraine and TMJ by doctors and they didn’t work. I also had no side effects except that my eyebrows droop and get the “Spock look” for 2 1/2 months until it wears off. UGH! This time we tried all kinds of preventative meds that didn’t work and finally got accepted by insurance to pay for the Botox treatment. I had the FDA protocol of 31 injections. He took it easy over the forehead due to my typical eyebrow droop so he stayed away from the direct eye area and concentrated mostly upper forehead.
First week, there was barely any change. I muddled along for nearly 3 weeks and then the proverbial “you-know-what” hit the fan! I got the migraines from hell that my Imitrex barely touched. Pain meds didn’t work – nothing! For 5 days I suffered. I had my husband take me to the ER, but it was a 4 hr. wait so we went home at my suggestion. I called the neurologist. office. He refused to give me ANY pain meds – just a 6 day Medrol dosepak for prednisone. I was in tears. Started to take it and I did get relief for 2 days. Now, I’m at the end of that taper and I feel like I have the FLU! I HAD the flu in December and every joint in my body ached – the runs, ear pain, etc. NOW, I have it all over again. Minus the cough and typical “real” flu symptoms. I feels SO bad. Now, it’s been 10 days and I’m at the 4 week mark. What is happening? I just know I’m experiencing a reaction to the Botox! First time EVER! I hear of people getting this all over the internet, but they had 100 units – 60 units, etc. That is bizarre to me! I had the regulation 31 units for migraine. This migraine neurologist is NOT sympathetic at all. I am SO MAD at this guy. His bedside manner is horrible – you can’t tell him anything, i.e. info from world-famous doctors on this subject that have written papers on migraine. He just doesn’t want to hear it. What am I to do? I want to never go back to him again due to the lack of empathy to my severe pain last week. Any suggestions?
I’m so sorry you are having such a difficult time – that sounds frustrating. First let me say you don’t have to go back to him, not all doctors are created equal so to speak. Is this doctor certified in headache medicine, which is different than being certified in neurology? If you feel this doctor isn’t listening to you and/or taking your concerns seriously, it’s OK to find one who will. If you haven’t seen this information on how to find a true migraine expert here you go; https://migraine.com/blog/really-find-headache-specialist/. And this information on how these doctors are different; http://migraine.com/blog/how-are-migraine-specialists-different/.
I have heard stories from other patients who have had less than optimal experiences with Botox. Unfortunately I believe it’s a waiting game while the medication works it’s way through of your system. This link will lead you to many conversations regarding Botox both good and bad. https://migraine.com/topic/botox/
I do hope you are feeling better soon, will you keep me posted?