Feeling Isolated

Anyone ever feel misunderstood? My co-workers seem to think I'm going to recover from this nerve disorder. They can't understand ATN is a chronic condition and isn't 100% curable. Of course I want to be cured. Who here doesn't?

I'm exhausted from the Trileptal and Lamictal. I'm drinking 3-4 cups of coffee a day just to try to stay awake. I read that caffeine can irritate the nerves but my only other option is to be a zombie all day.

I'm going to see a chiropractor on Monday to talk about Upper Cervical Adjustments. Has anyone tried this? Wondering if it has potential to help.

Has anyone here tried Ketmine cream? I'm thinking about asking my doctor about that one. I can't imagine adding more pills. I feel like my mind and body have aged 10 years in the past 6 months.

I sincerely hope all of the others out there are staying hopeful and having some relief today.

Please send some positive energy my way today if you're so inclined. I'll send some back to you too.

Thanks,

Megan

Suggest you run searches on "chiropractor" and "ketamine" in the search window at top right. But to answer your basic questions, quite a number of people here and elsewhere have tried a NUCCA Chiropractor. Results seem to be quite mixed. Some folks report getting better pain management, a few indicate long periods of total relief. The majority indicate no lasting effect and a relative few report increases in their facial pain. It's a trial and observe process.

Ketamine is a powerful anesthetic agent. Depending on where you are in the world, it may not be available over the counter in medically useful concentrations. Again, results are variable between individuals and even in the same individual over time.

You asked for positive energy. The flower here is my version of same. I run a Facebook page called "Spots of Light", and I try to include one of these in every newsletter we send out.


Regards, Red

Megan, yes I've tried an upper cervical chiropractor and it does help. You do have to keep going back and there are ways to sit and stand that keep you in 'balance'. Good luck to you.

Megan, I completely understand. I think or better yet know people are clueless about this. Frankly, I guess I am also. I am still working for the right answer I guess like everyone else is. I also am sooooo tired of feeling bad and tired. Just this last week, I have hired a personal trainer. Not because I feel any better but just to see if I can feel better. At least she has me moving I guess because I have not wanted to excerise in a least a year. I am feeling determined to figure this out or die trying. LOL! Anyway, hang in there.

Megan, like you I feel that others don’t completely understand this condition. It is difficult for others to comprehend that this is permanent chronic pain. People have said “there has to be a cure” or the “body will heal itself”. I especially felt isolated and completely afraid immediately following my diagnosis. I couldn’t deal with the fact that I have to live out my life with this horrific incurable pain. For about 2 years I have been taking 600mg of Tegretol daily. This helps to take the edge off some of the pain but unfortunately not nearly enough. I do manage to carry on with life and most of my activities but I have a constant awareness of the pain. Most people who interact with me have no idea that I am hurting 24/7
I think it is good that you write here as you will benefit from significant knowledge and experience. I haven’t tried the upper cervical adjustments but I am encouraged to try it because of you and what Red described as mixed results which could be positive. I would like to see if it would help. I do have a cream that includes Ketamine that provides temporary relief. My nerve pain is inside the jaw bone which is hard to reach. I think the cream may provide you with some relief even if it is short lived. As you know even temporary relief is welcome when you are hurting all of the time. Thank you for writing and throwing out ideas that’s can be helpful to you and others. I send you an abundance of positive thoughts and energy.

Hi Megan. I know its sooo hard. I try to stay so busy all the time But in my quiet moments… On constant meds… Yes. I feel it. Im in constant pain and it greatly impacts my moods and social life. I have tried almost it all. I spent 3k on NUCCA but it did not work for me at all. Stay strong.

Megan, sorry your co-workers are still with the mind set of always being able to fix the underlying pathology. Really has to change. Hope is on the way with TN awareness. Perhaps some TN jewelry and propaganda surrounding you will condition someone.
I can comment on Ketamine for ATN. I have a 10% Ketamine gel made at a compound pharmacy, prescribed by my Pain doc. It works well, I use it for flare ups and for sleeping on a pillow. Also helps with my ON when I put it across my occipital muscles. It helps my constant scalp pain as well. but it is only a part of my pain weapon arsenal.
My other most important med. is Botox. I get 30-40 injections on my scalp, temples, above ears ( to wear my glasses), forehead, top of head, Occipital block, and in the masseter muscle for the ATN side. I have TN on the other side. I have had to find a cocktail of many things to combat complex issues. Most recent addition has been a transnasal spheniodpalentine ganglion block. It was so successful I now have the medication to use at home. As for Energy- that's a balancing act for sure. I am sure you have found overdoing to cause days of repercussions. So getting plenty of stress free sleep is key. Vitamin B complex has been a good energy boost instead of caffeine. Also green tea vs. coffee seems to be better for me. I do not get satisfactory relief from the traditional medications, but do use some as needed. Such as baclofen, and tramadol. But mostly herbs and vitamins. Can not comment on Upper cervical, but I do get good results from my chiro. Sending hope to you, Hugs ~Tree

Thank you, everyone, for the support and understanding. It's immensely reassuring to have others understand this pain when the vast majority don't see it, understand it and minimize it or believe I'm making it up.

Great suggestions on things to consider. I'm going to keep searching for my arsenal and come up with a combination that works. My goal for 2015 is to be able to wear my hair down again and let it touch my face, even if only for a couple of hours.

There is a 15 minute award winning documentary on youtube called the Suicide Disease, Frances Shavers. It explains our disease and follows a woman who was a successful professional and choef of staff of Notre Dame. I ask people to watch it. Amd when they do, their whole perspective changes.



I never understood chronic pain until I had this. No one can truly get it… But they can become better educated and informed.

As for pain management… I am still working on it. Unfortunately my chiropractic visits for fibro have been put on hold. I had an adjustment shortly after my pain began and the adjustment increased my TN pain unbearably.

Megan, I'm so sorry about your pain. I too have TN and this is year 15. I just wanted to die for over 10 years because of the pain. No one had an explanation. I am doing so well now. I take Clonopin, Neurontin and Tramadol and if things get real bad I have a narcotic that I can take called Dilaudad. Please don't suffer. Ketamine definitely helps especially if you use it twice a day like clockwork.

Best wishes, you are not alone,

julz

The only thing that matters is what YOU think. Think positive and don't let your colleagues make you feel bad. I have a lot of people who see me right now and think I'm healed. I don't complain (so how would they know) and I take a narcotic before I have to go out to eat, talk, etc. A member of Women Divers Hall of Fame I am often called ot speak. I think the meds are working. Remember 15 years and I live by "What you think of me is none of my business". This is for your own self esteem. People can be so hurtful. If I can help you please let me know. I'm home most of the time taking it easy and then I spend about 5 months traveling around the world. Without my meds I'd have to stay home and in bed on ice.

Hi Megan! Sending positive energy your way!
Yes, I feel misunderstood all the time. It’s a frustrating road but we all need to keep fighting and educating our friends and family.
I’ve had cervical adjustments, they didn’t work for me. I also had my atlas (plate at top of spine) adjusted and though it didn’t help with the ATN pain it did help my body feel balanced/stable.
I’ve also tried Cranial Sacral Therapy, again, didn’t have any pain reduction. Was a very interesting treatment, but I’m open to try anything.
My Neuro doesn’t recommended I use any creams, so I can’t comment on Ketmine.

Keep us posted on your Chiro appointment!
Best of luck
~Erica