It was worst when I was running at the gym....it was so bad that I had to stop and was hunched over in pain!
I have continued feeling this pain on and off randomly and get sharp stabbing pains of this too, that make me jump and wince.
All I can think of is that my stomach muscles are now pushing against the battery & wires and making them move.
I really need to see my consultant but I have been contacting his NHS secretary since the beginning of December, via phone calls and email, but haven't had a response. I am supposed to see him in the new year, as he said when I saw him at the start of November. This time is truly urgent and I need a plan of action to help me physically and mentally.
Currently I am stuck. Stuck in the same place I have been many times, over and over, but with work being less understanding or caring and with me more frustrated than ever before! I need to get on with my life, and manage whatever it is I can. I know family is more important than a job but I want to have that opportunity!
Today I have turned off my stimulator to see how I am without it. Mike, the St Jude's rep, suggested this back in November when he saw that I was generally down about it all. Well, all I know is that the stim definitely does something! Today I have exhausted, pressure in the back of my head and far more dizzy.
At least I know it has been worth it for a little relief. I just need more relief to be able to believe I can control the worse pain better and therefore function when I need to. I also need this added abdomen pain and battery flipping issue to stop!
When will this all end!!??
Thus all sounds so distressing. You are very brave to continue working yet staying home with the pain might be more depressing. I look forward to reading how you resolve this x situation.
ReplyDeleteThank you. I don't feel very brave and am sure the stress has massive impact on my ON.
ReplyDeleteI am pretty good at keeping busy and finding a purpose to life, so no doubt I would be less depressed at home!
Dear unluckygal,
ReplyDeleteMy name is Kevin and I live in Chicago. I have occipital neuralgia starting very mild in 2004 but becoming disabling in 2010, causing me to leave a career that I loved as a Director of Research & Development for a large electronic communications company.I have recently found your blog, but I am only at August of 2014 in my reading. However, I jumped ahead to this most recent entry to see how you were doing. Not so good, I see. I had frightening symptoms very similar to yours', but have been able to get them somewhat under control. I have had over 100 needle-based procedures since 2004 (most having been done since 2010.
You sound so desperate, and as I have been there, I wanted to make a quick suggestion that has been very effective for me. Twice each week I take 30 mg of prednisone (three 10 mg tablets, also very cheap, < $10). Anywhere from 8 to 24 hours later my pain is cut in half for about 24 - 36 hours. It is a powerful anti-inflammatory, and presumably reduces inflammation around the C2 & C3 nerve ganglion, bringing pretty remarkable relief, at least for me. Knowing that I have this source of relief available is very calming for my outlook on life. And there is flexibility regarding the days that I take it, which allows me to time it to be "good" for important events. I would think you could take it on Sunday to get you good for Monday/Tuesday at school, and Wednesday to get you through the rest of the school week.
You will need to see a rheumatologist to get a script written. Most medical professionals have a knee-jerk reaction about taking prednisone on an ongoing basis, and recommend against it. And you will read all kinds of warnings about it, but my Rheumatologist tells me that 60 mg per week is very low dose and he has had rheumatoit arthritis patients on it for decades without issue at this dose. You'l need to get a bone "dexiscan" when you begin taking it to establish a bone density benchmark that is repeated every two years. I have been on it for 3 years with zero change in bone density. If you are interested in discussing this offline by email I'm sure that we can find a way to exchange emails. Empathetically Yours, Kevin
Thanks Kevin. I really appreciate all your thoughts and advise. Nice of you to take the time to fill me in on your own situation and I am sorry you have had to leave your job previously.
DeleteAs I am awaiting surgery for the implant to be replaced and therefore it should work as intended, I will wait and give that a chance first. However, if I need to know more in the future, I appreciate that you would be willing to explain more about the Prednisone medication.
I hope things are still good for you. Take care.
I am so pleased my blog has taken your interest. Enjoy.