I'm so glad you have found some relief and thanks for letting me know how you are doing. If Indo works that well for you then this would suggest HC even if that's not the whole story. I had to pay to see the best headache specialist as I was too ill to go on the 2 year waiting list. It was the best money I have ever spent. I also have to pay for the botox treatment, as not available on NHS here, which I can only describe as being a miracle. I have virtually no pain most of the time. (Financially, I had no choice as it was either pay or give up work) I also still need Pregabalin as the botox does not seem to work so well without it. I saw many specialists and neurologists who basically had no idea what was wrong. The usual story thinking I was a loony tune but due to my own research and some help from Red on this site, I managed to work out what was wrong. No other specialist I had seen had ever seen anyone with HC so will not know how to treat it. HC has symptoms that are a mixture of ATN, migraine & cluster headaches and can appear to be more than one condition. I would suspect that the specialist you are seeing or GP has never seen anyone with HC either. There are other drugs available that work well for HC so it may be worth looking into that if botox is not an option.
I have Hemicrania Continua which has symptoms of ATN & cluster headaches with a continuous background headache with severe exacerbations. It completely responds to Indomethacin so if this is what you have all symptoms caused by the HC will go in a few days. Problem is, Indo is very harsh on the stomach so cant really be taken long term. I have to have very high doses to control my HC so I wont tolerate it for long. I have Botox now, which is really helping and I don't need to take the Indo so much. I also take Lyrica which had stopped working but combined with Botox is also helping. I actually get no pain days now which is amazing after 8 years of constant pain. You need to see a headache specialist as your situation seems very complex, I hope you get some answers soon. Unfortunately, it is still very difficult to get a proper diagnosis for these conditions and the answer it to do your own research which you have done. I only got diagnosed after doing my own research and telling my GP what I had.
I understand. One of the most difficult problems with TN and headaches is dealing with the doctors. My wife had chronic classic migraines for 40 years. As the headaches finally left, the ATN started. She says that ATN pain is much worse than a classic migraine. She has had MVD, gamma knife, facial injections, and radiofrequency stimulation 3X, all to no help.
She takes Baclofen and Lyrica but the Lyrica makes her dizzy and drunk so she can't function and have a life. She taught school for 28 years but finally took early retirement for the headaches. Now she can't drive or even cook. She can't cook or clean house. She can't chew or it will flare up the ATN pain She survives on 2-3 insure per day and eats bananas.
She was going to have a new brain procedure for the ATN at Emory Hosp. in Atlanta but the doctor said she was too depressed and nervous to have the surgery. We are still trying to figure out what to do next.
I called Mayo Clinic in Jacksonville yesterday but they said they are not taking anymore appointments for neurology because they are too backlogged.
She has also tried acupuncture and cervical Chiropractic.
A chiropractor in Alabama has written an entire textbook about how upper cervical adjustment cures TN. I actually know a person with TN that swears by the procedure bur her chiro is in Merreitta, Ga.
I would put off getting MVD as long as possible because it really is rough and it don't help many people.
Please pray for everyone with TN because it reall is awfull!!!!!
I too am scheduled for surgery soon. Oct 14th. I've had two failed mvds and one failed gamma knife so my surgeon is going to go in, separate the nerve fibers and snip the ones that are causing me problems. I will probably be numb in some spots, although he said some people don't even get numb and they have no idea why. He should be able to get me off all of my meds which are Lao messing with my nervous system big time. I can't wait to be done with it all. The stress of waiting is causing me a horrible migraine and tn episode though.
HCal wrote exactly what I was going to write. Before being diagnosed with TN I couldn't understand why my migraine medication was not helping with my pain anymore. Once I was diagnosed it made sense. My TN and my migraines trigger each other and if misery loves company then I would say TN loves to trigger headache in people who have problems with headaches of any kind.