Canagirl,

Valium/Diazepam is a benzodiazepine used to treat Anxiety.

I can say with certainty that you are wrong in your assertion that your fellow Members are calm and normal. I can assure you that those of us who suffer chronic, severe pain - no matter what the cause - rage internally or externally, break down, upset Loved Ones with short words, cry at the pain and injustice, suffer bouts of inconsolable depression and pray to the Deity of choice for it to all go away.

As to medication, I wholeheartedly agree with en bloc that you should only add one new med at a time. That way you know what works, you find side effects and contra-indications.

You are new to all of this, and it is frightening to have one's life changed so radically and painfully, but eventually you WILL find the answers and the relief.

You have found the wonderful members of this Forum for support and advice. I have benefitted from being here more than from any Therapy sessions I have attended. Keep Posting, keep searching for answers.

Dave.

I saw a psychologist when my symptoms started. She was very specialized and dealt with chronic pain patients. We did talk about all aspects of my life and she had lots of different modalities to teach me to deal with the stress of having chronic pain.

A therapist might not be work for you right this minute because you are having acute onset of symptoms and just need some pain relief. Once you get your symptoms under control, a good pain therapist would help you get your emotional state balanced and help you move through this terrible experience. I highly recommend this. Meditation at the end of the day seems to help me a lot.

Still losing it. I can't do this anymore. I still feel alone. It seems like nobody else has this as widespread as I do and as constant as I do. I don't even know what to write anymore, but feel like I still need responses from eberyone to see if there's someone like me.
This is too hard. I can't imagine living for another year like this. I need research to hurry up and start making stem cell trials available to everyone who wants ot. Not just certain types of neuropathy. We know the risks just give it a shot and see what happens

Hi English Dave,
Just for more information, Valium/Diazepam is also commonly prescribed as a muscle relaxer. I use it occasionally for musclespasms and it helps me get some rest. Thank you for your words above, I totally agree. Hope Canagirl can find some relief for her pain.

Canagirl,

I had no intention of detailing my own issues here, but your asking makes me feel you are reaching for a kindred comparison where it comes to pain, so maybe this will help. I will try to be brief.

I have been on this journey for 25 years, although the seeds (and mental conditions) were sown much earlier. At the end of my 4-weekly Infusion cycle, between meds I am at a 9. Fully loaded, a 4-5. When the TN or Cluster Headaches hit - off the Chart 15 or more.

In 1990 I had a 3rd MVA which crushed the vertebrae in my neck. The first two damaged upper and lower spine. This one triggered an escalation of Neurological Hypersensitivity (allodynia) in my legs, arms, neck and back which has gotten progressively more severe. The faintest touch hurts, clothes "burn", I cannot even have a sheet over me at night - and this is the North of England. Recently I have found that Solvent Neurotoxicity from the '80s may also be playing a part in my deterioration.

Compressed spinal cord in my neck means I feel as though I have been stabbed through the bone in my arms. Weakness/numbness from lower spine left side.

Chronic Neuropathic Facial Pain with TN feels like whole left side of face and head is being shocked through sharp needles. Chronic Cluster
Headaches - with meds still strike 3-4 times a week for up to 2 hours. Feels like a white hot railroad spike driven into brain behind left eye. Makes me desperate to punch my fist through my eye, rip my brain out and smash it against the wall.

Other physical and mental conditions and issues.

How do I cope? A lot of meds that have been added to as my musculoskeletal, neurological, arthritic and Cluster Headache conditions have increased:
Lidocaine Infusions
Oral Ketamine
Morphine
Tramadol
Arcoxia
Topiramate

I also meditate, daily if I can. Since I found this Forum 4 months ago my mood and outlook has improved as I have a worthwhile distraction from being trapped at home by these, and other, conditions.

Above all else, you do become hardened and 'used to' the pain. It is not nice, it is draining, but at the moment you are in a position where diagnosis and treatments ARE likely, even if it takes a while.

I know you keep hearing it, but try to relax - stress and anxiety increases physical pain. Meditate, count, breathe, think "puppies and kittens", anything…

Know that you are not alone.

Dave.

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