Wow. I am so sorry for ur pain. 25 years... U r strong. I was looking for a kindred spirit, thank u. I was sad to hear the allodynia gets worse. I already burn on every inch without anything touchin me, but when I get rubbed it's worse and lasts. I was really hoping this would be one thing that improved iver time. I was going to start aqua therapy this week in the hopes of reducing this, but if it worked I'm sure u would have done it.

Canagirl,

My position is extreme - I am carrying a physically battered, poisoned, broken down body, yet still I get 50% relief. My physical pain accounts for probably half of my issues, extreme as it is, yet I still survive the days - with a lot of help. If it comes to this, one has to live within new limitations.

Try aquatherapy. It may work for you, there is nothing like that near me and I have many other issues which curtail my ability to try outside, or physical, Therapies. When I was more physically able - near the start - I had 9 years of undiagnosed Cluster Headache attacks (up to 8 a day) as I assumed they were part and parcel of my TN, and didn't mention them specifically to any Doctor.

Try anything that you think will help that meets medical approval. I do not advocate Quack or "cure-all" remedies. Perhaps even a Psychologist versed in treating Chronic Pain sufferers would help you find strength and coping mechanisms.

Dave.

Add: Strong??? I aim to be positive here on the Forums as NT gives me more than anyone knows, but my Depression - caused by a combination of Issues and Depressive Disorder - is as dark as a black hole.
D.

Canagirl,

So many wise words here already. Just wanted you to know that I really feel for you right now and know from experience how hard and frightening it is when something is terribly wrong and you can't get answers. I know sometimes it is hard to hang on. For a while my motto was from one of the sailors in Master and Commander, he had "Hold Fast" tattooed on his fingers in such a way that you could read it when he was holding onto the rigging during a storm. I actually wrote that on my hands before my huge nerve surgery. Hospital staff thought it hilarious, but it got me through many a stormy time. "HOLD FAST" Canagirl. It can take a while to get answers, to get the right meds, to find the right doctors. There is despair, yes. Visit it when you need, cry and yell and gnash your teeth but DO NOT GIVE IN and stay there.

I second starting neurontin at 100 3x a day, especially if you are little. Studies show it works synergistically with nortriptyline and people get better relief from both together. I will say though that if you have been worsening since starting nortriptyline maybe take less. It does ramp some people up and can oddly cause tingling in some. I took only 25mg as my highest dose, but I am pretty small. Also keep in mind it can take 4-6 weeks for some of these meds to reach maximum effect eve though there is often relief before that.
I also second the benefit of a therapist experienced with pain and chronic illness. Mine did hypnosis and EMDR which I found immensely helpful as it approaches the work in a different way. Also try getting in the water, everyone is different and it may work for you. Try to stay calm, breathe deeply and be kind to yourself. The panic makes your nervous system more overactive - I can say this from having been there!

I hope your appointment goes well. I am sending Healing Love,
Littlepaw

I'm so sorry to read about all this from the OP as well as EnglishDave.

For both of you: for pain I use kratom. It's legal here in the US in all but I think 3 states and readily available from online vendors. Please PM me if you want more info. It's a natural substance, the leaves from a plant crushed and made into a powder. I would certainly recommend it over Vicodin or the other pharm opiods for pain and general well being. I cannot comment on any of the other meds for PN.

For Dave: I'm a clusterhead too, have been all my adult life but thankfully recently it's gone away, I hope for good but you never know. **You mention in your list of meds Topiramate. Very helpful for me although it puts me in a fog. Shall I assume you've tried oxygen therapy? It's a godsend. There's also a mega-vitamin regimen which has helped many people. Details on the forum. And please PM me if I can help.

I can understand that ur body gets used to the pain. I hate the first 30 min or so after I wake up, it's excruciating . But after that my body just becomes one big blob of pain instead of many injury sites screaming for AT&T
Attention. It's a little scary though bc my bidy goes onto this weird numb mode where I feel likey whole body is one big and
Swollen numb lump, but I'm not swollen and not numb. Of I put new pressure on myself I can feel it but if my hand is sitting on my arm for a few seconds I can no longer feel it's there unless I move it i

Hey Balanchine,

I am SO happy for you that you are in a period of - hopefully permanent - Clusters remission. I have been saddled with Chronic attacks so the Topiramate is helping at the moment, although I have just had to up dosage after 60-odd days of relentless pain again. I have a short list of meds at my GP's, culminating in Lithium to work through, put together by the ONLY good Neuro I have ever seen. I saw him for TN and Neuropathic Facial Pain and had a Cluster Attack in his office. Easy dx then?!

I recently went back to see a (different) Neuro after years of avoidance. One of my hopes was for Oxygen Treatment. I got no answers to anything I needed. Never going back.

As for kratom, like most meds and natural substances it is abused. Here it is overwhelmingly sold as a "legal high" at the moment, even though there are numerous strains developed for treatments. But because there is a reported death caused solely by the toxic build-up of mitragynine and 7 hydromitragynine from heavy recreational kratom use, it is on the cards that it will become illegal - as it is in Thailand and Australia.

Of course, the medicinal benefits are swept under the carpet. Far more people have died from abuse of prescription and OTC meds. If I were young again (and not so conservative, without the underlying health problems of heart/diabetes…), I would probably have chosen something like this over mixing pain killers with dangerous amounts of alcohol and marijuana. This was my strategy when trying to cope with "simple" spine injuries and Anxiety.

Dave.

Add: While the above is caused by the attitude of the stupid re: kratom as a legal high HERE, I found a huge amount of information from the US regarding different strains for pain relief and anxiety etc.