Hello from Canada, where it's snowy and white here

[Patricia]

My name is Patricia and in 2006 I was diagnosed with Multiple Sclerosis then years later I was Diagnosed with a chronic pain condition that makes my face hurt all the time.

I live in Canada and they had Diagnosed me with first trigeminal neuralgia, then trigeminal neuropathy now there saying currently it is atypical trigeminal neuralgia it’s hard and rare condition to Diagnose and now I am awaiting this month to go to my appointment for my next MRI this month one because of my Multiple Sclerosis but then to see what eles can be done for my TN or if it has worsened.

overwhelmed I have been on Carbamazepine, Oxcarbazepine, Condeine for years and I mit as well spit it out because it does not help in anyway shape or form but I am still on it for now. I started taking Indomethacin and that helped at first. Started that in feb of this year but on low does because they don’t want to keep me on it because it is very dangerous, but I only take when I need it and it works when it wants too. Then I was given Gabapentin and I will not use it at all, the bottle is still sitting on my shelf. It may work and be good for others but I do not trust this medication. So when I get my MRI and then result then they will find me something eles but for now it’s this.

I love spending time with my cats, watching old turner classic movies and cooking.

Good day,

[ModSupport]

Hey Patricia,
I too have had the ‘joy’ of trying to navigate through multiple diagnosis (or pseudo diagnosis ie 'It could be ‘X’ or it could be ‘Y’…) and trialled on all sorts of medications, but without any great success. Each and every dr has had their own theories and diagnosis, everything from the generic ‘nerve pain’ to a psychological issue and everything in between. Then, years later they found a genuine cause, they found something growing in my brain, so they operated. ‘All fixed’ I was told, only it wasn’t ‘all fixed’ at all. I tried to tell the medicos it wasn’t all fixed but because there was a psych diagnosis from years before it gave the medicos a fall back position ‘We think it maybe stress related…’ Well, no wonder I’m stressed… I have a confirmed diagnosis and yet they turn to stress as a cause/answer… OMG.

With ‘Multiple Sclerosis’, the name itself tells us that the symptoms are not set, ‘Multiple…’.
In very layman’s terms, if you consider nerves similar to electrical cabling and the insulation around the cabling as the myelin sheath. MS is a breaking down of that nerve sheath, the insulator. If that exposed cabling/nerve comes in contact with another nerve then you can have ‘multiple’ misfiring and ‘multiple’ symptoms anywhere in the body.

TN has been one of my many diagnosis and for me, it was just another label to add to the list. Personally, for me, the TN diagnosis was one of those ‘pseudo diagnosis’. They ruled out any other cause/effect, so, ‘It must be TN…’ I had a neurologist who told me he knew exactly how to treat it all and I received multiple injections of Botox in my face, neck and shoulders. When these treatments were not successful the neuro became rather frustrated (as if I wasn’t) and returned to the psych diagnosis. They tried all sorts of meds. I was on uppers and downers and substances that simply mess with the mind something terrible. But no answers. I’ve had 6 neurosurgeries and yet they still seem to like find any other cause for my on going symptoms. It’s gotten to the point where I’ve pretty much given up on getting any direct answer, so now, for me, it’s just a case of ‘management’. Pain management, symptom management, medication management, activity management etc. etc. and it can be a HUGE juggling act trying to manage it all.

This is NOT an easy journey, we know that because we live it too, so come talk to us.
Merl from the Modsupport Team

[Pat4]

Hi Patricia
I’m so sorry that you are going through this . I know how you feel. I have had intermittent TN since in my 20s and I’m now retired. Thankfully I’ve had long remission periods.
I’ve been trying to track my triggers and stress is the biggest one followed by several nights of poor sleep. Dental problems also trigger it. My first jab of Astra Zeneca also led to several weeks of whole body neuralgia. I developed shingles two months after the second jab but as I was highly stressed over a matter, I can’t directly connect the shingles with the jab.

But what I’m trying to say is that in my case, stress is definitely a factor with neuralgia and I have to intentionally breathe and relax.

The excruciating shingles could have lasted months but I was able to get over it in two weeks as I followed the advice of Dr Eric Berg whom I found on You Tube.

The post was simply called How to Get Rid of Shingles Pain Fast.
His advice was not to massage the site of the pain but to massage the mirror image to the pain on your body .

The relief was almost immediate. As the pain receded and moved I followed the mirror image on the opposite side of my body. As the pain returned I repeated the massage.
The intervals between the return of the pain lessened and I was able to reduce my cocodomal painkillers. After 3 days I only took them once a day .

I am forever grateful to Dr Berg.

I realise though that I must learn to recognise stress and deal with it. My variety of methods are as follows:
1.I repeat mantras in my head. E.g.
“Breathe” : in( count 4) hold ( count 2) out ( count 6);
“Shoulders down- relax- breathe”
“ Not today, Hosay!- Breathe”.

2. I get on my mini trampoline, rebounder , find a rebounding video on you tube and try to follow the instructor.

3. I put on a sleep inducing app ( I have Headspace) and fall asleep. I release all the muscles in my body one at a time . I’ve had best results when I start with my face rather than toes. Release the frown, cheeks, let the jaw go slack, neck shoulders … I work my way down to my toes.

4. If all else fails I get into bed after taking the painkillers and moan . Believe me, moaning aloud is self comforting and sleep comes. Sleep is a great reset and gives me some respite .

I hope that there is some small thing from my experience that might help you. Being aware of stress is vital . Best of luck for a pain- free life.

[Medica]

I am so sorry you have been through this
It’s so very frustrating when Clinicians fall back on saying the cause is psychological .
I was a physician when my pain journey began.
The pain began in one part of my body. Multiple sites later it became most problematic in my Face.

The most accurate diagnosis for me based on Facial sites affected was Glossopharyngeal Neuropathy . Unfortunately most Doctors just know the name and Code for Trigeminal Neuralgia and its easier for them to type that in than look for a Dx code they do not know.

I agree with you totally on Neurontin —like diagnosing TN instead of GPN Docs will often prescribe that inappropriately because it prevents them from having the stigma of being an Opiate prescriber on their record.

There has been discussion among Clinicians about inapprpriate Neurontin use for all types of Chronic pain but some docs love an easy answer and ignore the side effects warnings . ( See The AFP article from December 2019 about un-intended consequences of its use )

I was on the max. dose of Neurontin for several years and became dysarthric. A later re-trial made me seriously depressed ,

BUT–Its important to note that for many people IT is a God-send . Just not for me .

Multiple seizure meds were tried with serious side effects . So finally I went to a pain clinic and was placed on opiates . They have been a blessing (and given me some quality of Life ) . I hope you can find someone to treat you with something stronger than Codeine IF that is what you need.

Codeine is not an appropriate opiate for severe Chronic Pain in my opinion. Extended release Opiates MAY be a better choice for some people. Many Pain Docs are Anesthesiologists and that is all they do … as opposed to the Neurologist who does Pain treatment as just part of their practice.They may be more willing to look at your Opiate options.

I hope you can find one who will help .

I am going to state a few things about Opiates here since I am suggesting you may need something stronger than Codeine. ------Of course to be on opiates YOU need to know yourself . Have you ever had a problem with inappropriate addictive substance use ?
Do many Family members have issues with addiction ?

Regarding Opiate use in addictive personalities --In one part of my career I was a certified Addiction Medicine Specialist — there are times even addicts need opiates.

I had an In-patient addict who was HIV positive and having a terrible Shingles outbreak . We gave him opiates because he needed them for pain relief but then had to get him off and back into treatment .

But that was an acute situations.

Its use in Addictive personalities is a sticky wicket for Chronic pain,look at the Deaths that lead to the Oxycontin issues in the US. I am NOT advocating the use of Opiates in people who have known issues, Positive Family History for addiction etc,

Another issue to bring up with Opiates is the more you take the more you need. Many Pain clinics handle this by switching people around to different meds and adjusting the starting dose of the new med to see what min. dose will work.

Opiates can be a blessing and not a curse if you have the right physiology and physician in charge

Of course Opiates alone are not the answer . I use topical creams ( lidocaine ). nasal sprays ( including Tetracaine ). Tylenol , Vitamins and so on

One of the most important treatments over a ten year period were V2V3 numbing injections in my face. They were so important–I could not have made it without them.

Bottom Line is I hope you will find a Pain Clinic that will look at all your options for treatment. If Codeine did not help perhaps someone trained in Pain Medicine should look at other meds in that arena along with other medications and treatments .

.

[jason_s]

Hi Patricia, as daft as it sounds I buy these off Amazon Natrol Vitami B12 5000mcg Fast Dissolve (100) Strawberry 100 Tablets and these have helped with the meds I take for Ms and TN. I hope you get some reprieve.x

[Notafraid]

What about friends? Do you have at least one good friend to socialize with? I have to spend a great deal of time in my home because of chronic pain. I miss having a good friend to spend time doing things like watching a movie with. I’m not a “downer”, just retired and married. I guess it’s the married part that hampers me and friendship development. My also retired and older, aging husband creates a bit of a hampering situation for me. He and I share very little in common. He certainly is no friend like a good girlfriend can be.