Hi, my name is Mike and I am 44. From the age of 19 to 31 I suffered from cluster headaches. In 2008 I had what I considered to be a cluster headache cycle only it was a little different in that I did not have the runny nose and red eye that I had always had. In addition I felt pain above my rear upper teeth. The headaches ended after a few months.
A couple of months ago I started to get a similar cycle of headaches. They started above the rear teeth and would simultaneously be behind or around my right eye. The pain at first was bad but not cluster level but as time has gone by the intensity had increased.
About a month ago (one month into current attack) I started to have more than one attack in a day. Often I would have 5 or 6. It was so bad I went to the ER and was prescribed Tegrital. Tegrital initially took the edge off, but it was only after my new neurologist that I saw two weeks ago upped the dosage did I see results: from last Friday night until Tuesday night I was pain free - not even an inkling of pain. After the pain returned on Tuesday, I have found that I have had to take regular Tegrital doses as well as doses for when the pain occurs. If I take it quickly when the pain occurs I can mostly abort it; otherwise I have to endure it. I feel like if I could keep a better stable dose of Tegrital in my system, I might be able to prevent the pain. As it is, I am worried this is causing me to goto higher and higher doses. I hope this slows down.
As I described it, does this look like TN? My neurologist was non committal although he continued prescribing Tegrital. And the pain responds to Tegrital.
So how do you sufferers who have to go thru this every day get by it? How do you live regular lives and work etc? I have 2 Masters degrees and the time I missed from working due to my cluster headaches in the 1999s haunts me to today with respect to jobs. Hiring managers spot it immediately. I’ve been wo work for a long time. I don’t know how to fix it - and now this TN shows up.
I really need to know how you can get thru TN on a day by day basis with any semblance of a normal life. IMHO this is so much worse than cluster headaches. Clusters last 30mins per day and are gone. And after a few months they go away for a while. TN attacks can happen 5 or 6x in a row and they might not ever go away. I could gut out clusters bc I knew they would go away. These things can happen over and over. I feel like I’m constantly behind the Tegrital - taking it too late, after the pill has worn off enough to allow my pain to return.
I know there are many types of TN…does mine sound like it? I don’t have an obvious trigger like chewing or brushing the teeth…mine just happens.
I don’t know how I can go thru these battles again. I thought I won them in 2000 when I went to a pain mgmt dr and my life was given back to me. I feel like I am starting over again. Lets put it this way - If I were to win Saturdays $320miion powerball, I would not be able to enjoy it whatsoever.
And are there any TN success stories at all? It seems like all I read about are people who have tried everything including multiple surgeries and nothing has worked. Anybody out there who a success story. Who’s pain went away? Or who tried botox and it fixed them? Just curious.
Take care and thanks in advance for your help.