Just a note of interest regarding migraines. When my neuro diagnosised me last moth with having occipital neuralgia he asked if i suffered from migraines. Migraines are often a very strong indicator of ON he said. He said that he will regularily give his migraine patients a regime of ON steroid blocks to reduce the migraine triggers. Apparently his patients have great results with this. I have been getting the steroid blocks as well to ease my neck pain and found they work well for that too. Just a thought for you Maur.
Thanks, PLS, for your headache info; it sounds like it's pretty much under control, but on the PTSD I would like to comment. Many people have a hard time understanding the concept of psychotherapy, of basically "paying someone to listen to you speak", and I must admit I used to be in that category, but I think it works on the same principal as having a long private chat with a good friend, in that having the opportunity to SPEAK your pain, and having someone actually HEAR you, can be very healing. I think a lot of times it's not about drugs or medicines, it's not about medical recommendations and procedures, but it's about speaking your pain, have a good old cry ( several, releasing the pent up emotions), and just knowing that SOMEBODY has heard you. I think you should give yourself this opportunity with anyone you trust, even if it's a psychologist, and see if that makes you feel better, calmer inside. Personally, I spoke with family members and friends, and I WROTE my pain, in stupid poems and stuff which no one is ever going to see, and over time that really, really helped me. If you want to give it a go but don't have someone you want to unburden on, then you're welcome to add me on here and inbox me privately. All the best.
PLS said:
Hi Maur, I've tried to talk to someone on what I went through but they just didn't understand. I just have to get over it on my own I guess. Finding this forum as helped though. As for my migraines, there isn't anything consistent about them except they always start with pain in the back of my neck by my incision. I don't think I've ever woken up with one unless I had one when I went to sleep but they can start in the morning. I've gone to the pain clinic at the local University Hospital. They took me off some medication and started me on a preventative (propranolol). I have a lot less of them now and when I do get them, they aren't as bad for the most part. I can still get really bad ones occasionally but that is more like 3-4 a year rather than 3-4 a month like I used to get.
Maur said:
PLS, You are NOT alone, believe me! The thing with this PTSD (I never asked for or took any treatment for it) is that it takes TIME to feel better, and you might find eventually you feel better for a long time and then it might hit you again for a while, but gradually less and less. I found that no one in my life really understood it, so it can be really difficult. They're think you're all better and good to go, but your brain is still remembering. Time is key, I think.Now, the migraines you mention, do you normally get them on waking up in the mornings, or do they set in later in the day? Can you say more precisely where they're located and what they feel like? Also, if properly diagnosed, what meds do you take for them?
PLS said:I'm new to this forum and I have never met anyone with TN. I've never been able to talk to anyone that understood what I went through before. It has been almost 11 years. You would think I could calmly talk about this but I'm crying just reading your response Maur let alone typing my response. My TN started September 2002 a couple of weeks after I had my son. By April of 2003, I was in so much pain it was either have the surgery or die. Those where my only options. I literally could not live with the pain any more. Almost anything is worth it for the pain to be low enough that I get to live to see my son grow up. The worst thing I have from the surgery is migraines (I didn't have them before my surgery). But if a migraine gets really bad, I can go to the ER and they can stop them. That wasn't the case with TN. I was pumped full of morphine but it didn't touch the pain. Life isn't always a bed roses now but at the end of the day, I get to see my son become a snarly pre-teen (okay, he is already there no become about it). You wouldn't think I would enjoy that but I almost missed all of it. It is the best thing in the world to watch my son grow up.
Maur said:Hi PLS, I'm really glad you mentioned the PTSD thing, that's EXACTLY how I felt after 7 years of agony and then suddenly pain free after my first MVD. It's worth mentioning because I was totally unprepared for it, and it might help others. I found that learning to cope with life after TN was a slow process and you go through all sorts of stages, from pure gratitude, to doubts that you ever had TN in the first place, to fear of doing anything in case you set it off again, to amazement that you survived it, to anger and grief at the pain you suffered and the time you lost, the whole gamut of PTSD, and your feelings do tend to see-saw a lot, and few people seem to talk about that.
I also think it's great that you've highlighted that while you still have pain post surgery, for you it's so much more bearable than pre-surgery. Some people unfortunately do not emerge from surgery completely pain-free, and whilst we tend to hear almost nothing from the pain-free ones who tend to get on with their lives quickly, we hear more from those still in pain, and I think it's important that you have put your pain in perspective. It's an important beacon of hope for others contemplating surgery, even though some might not be so lucky. Thanks for sharing!
PLS said:I was worried I was being too depressing. Glad it was helpful rather than depressing :-)
Even when I'm having a really bad migraine, it isn't a drop in the bucket to how much pain I was in before. Before I had my surgery, I hadn't been able to brush my teeth in two months. The last time I tried, I ended up in the hospital for a week just trying to get the pain under control. Just writing about this is making me cry. My friends keep telling me I have PTSD from TN. I hope you get used to how things are with you now. It isn't that I don't have pain but it is so much less that I've gotten used to it and just ignore it. I could have never done that before the surgery.
Delia Osuna-Orozco said:PLS: its so comforting to read your words...and to know there is hope..11 years amazing, I sometimes feel so down and depressed, always thinking if this awful thing is coming back....but hearing from people like you gives me hope...thank you!! Hod bless you.....
Hi Patty, thanks, that's very helpful. I sometimes get a lot of neck pain as well as the headaches.
All the best.
Patty said:
Just a note of interest regarding migraines. When my neuro diagnosised me last moth with having occipital neuralgia he asked if i suffered from migraines. Migraines are often a very strong indicator of ON he said. He said that he will regularily give his migraine patients a regime of ON steroid blocks to reduce the migraine triggers. Apparently his patients have great results with this. I have been getting the steroid blocks as well to ease my neck pain and found they work well for that too. Just a thought for you Maur.