My now 13year old son has suffered from severe headache with no relief for about 18 months. Possibly following an infection (he suffered from Pandas as well - no longer). No explanation, no remedy. We will absolutely try this. Thank you som much for your detailed description.
Swedish mom
I responded to you over the summer and the post does not seem to be up here. So, now, with a few months of Amitriptyline under my belt I'll report my progress.
My headaches: chronic (more than 15 days) now down to 7. I used to experience pain daily, even if not a full-blown migraine. Now, I have mostly pain free days except for the headache days.
Drugs I am on: Amitriptyline 30 mg, topomax 150 mg, back to back Lutera (bc pills) to halt my period (half pill in am and pm) with a .1 vivelle dot patch 2x per week to even out estrogen, sertraline between 25 and 50 mg daily, Botox for migraines. Zomig 5 mg pill as abortive (which I often take after Zofran so it works). Zomig spray of I need something fast, or I've eaten (works best for me on empty stomach. I also take magnesium and butterbur each day.
What I have tried: nortriptyline, a beta blocker, more topomax, and anti convulsive. Relax, imatrex, sumitriptan, frova, dhe (migranol). IV treatments. Steroids to halt multi-day headaches.
Summary: the combo of amitriptyline and Botox for migraines has worked the best for me. Prior to that, stopping my period put the biggest dent in my migraine pain cycle. I suspect that my cortisol level was faced by confronting some demons I had been sweeping under the rug, thought I had accepted, but we're really putting my hand over the red button all the time. I do 't know about yours, but my body has a way of saying, "Um, yeah, this is not working for me."
All of this was run by a neuro at Mayo and the only thing he would change is as follows:
1. No real evidence that being on two preventatives works. So, staying on Topomax okay - but I could consider pulling off of that eventually.
2. Amitriptyline can go up to 60mg - if I need to up the ante.
3. I could get an injectable abortive drug (at that time Iw as getting a lot of IV treatments) - like DHE - if I need to up the ante.
That's it. So feel your pain. I've had to be very aggressive in finding a solution. Mine came on very fast and very strong.
Make sure you are taking the amitriptyline at the right time, best @ 1/2 hour before going to bed & most important is to get at least 8 hours of sleep. Not enough sleep while taking this med. will be the cause of your headaches. Increasing the dosage at the right rate is very important.& sounds to me that by now you should be @ 50ml. If you aren't taking it at bed time could very likely be the cause of the increased heart rate. I am talking from experience & need to take another med. for my chronic migraines.
Our 8 yr old daughter came down with a virus/ flu like illness (possibly even Lyme) back in March /2013. She developed chronic 24/7 head pain at the onset of this illness that intensified at night. Nothing would touch it. We often slept in our clothes thinking we would be heading back to the ER for an IV of toradol and compazine (which only worked to put her out and pain returned when IV wore off). Long story short we have taken her to cincinatti children's hospital (#3 pediatric neuro hospital in US). They determined she was suffering from "new persistent daily headaches" which are often triggered by a virus or flu like illness. She had been having severe chronic head pain for 7 months!!
She was put on an experimental protocol developed by Dr Hershey there at Cincinnati in which she was to ramp up amitriptyline very slowly over many weeks . She started at 5 mg and went up by 5 every 2 weeks until she reached the therapeutic level of 30 mg for her. We followed this to the letter for many weeks and became discouraged as we got to 15, then 20 and no response...but then, about 2 weeks into the 20 mg dose we noticed she would have periods throughout the day with no pain!! Then, several days later she went ALL day without head pain which was the first time in 7 months!! It was like a light switch! It took several months but we are SO grateful for her relief! Apparently you must stay on the drug consistently at a "therapeutic" level for an extended period of time to achieve results. In our case she has now been headache free for about 6 weeks after reaching close to her therapeutic level. I hope this helps someone.
I have been suffering from cluster headaches since September 5 and they have progressively gotten worse they come everyday about 8 times a day lasting only 30-50 minutes but absolutely excruciating. I recently went to the doctor and she prescribed me sumatriptan 5% nasal spray with one spray in the nasal side where the headaches are and with in 5 minutes they are gone..and oh my god it works I have taken up to 20 % solution and it keeps them gone all day the only problem is my insurance company will only pay for 6 individual sprays tubes a month. I have gone online and found the Canadian pharmacy where u don't need a prescription to buy the sumatriptan at 20%solution a 16 day pack which is 156$ but so very worth it. It keeps the headaches from coming. To all who have not tried I urge you to talk to your doctor because before it I attempted suicide twice because of the pain being so unbearable. I can say the only side effect I have gotten is an upset stomach and I will take that any day over the headaches.
How are you doing now? My headaches sound exactly like yours. I wake up with them and they progressively get worse through out the day. Sometimes the pain is like a pressurized vice grip, sometimes it is a burning pain. I have a history of Migraine but these are not Migraine. My neurologist thinks they are rebound headaches from taking too much Advil and sudafed for my sinuses, which I also have trouble with. I tried 10mg of Amiitriptyline for 4 weeks but asked to be taken off of it due to not seeing any improvement and gaining weight. I was hungry all of the time. He then put me on Topamax, which is not helping. In fact, my headaches have gotten worse. I have worked my way up to the maintence dose of 50mg twice a day within the past week and do not care for the side effects that I am experiencing (moodiness, dizziness, fogginess and inability to focus) but my phone calls to my neurologist do not get returned. (Time for a new doctor!). I have a consult with an ENT next week to get his opinion to see if my sinuses are playing a role in these headaches. I would love to know how you are doing now!