Nerve pain (including Trigeminal neuralgia) and dehydration

[InfoAddict]

I was diagnosed with Idiopathic Classic Trigeminal Neuralgia in January, by a neurologist. She disregarded that I shared with her that while 95% of my nerve pain was limited to areas of the Trigeminal nerve, about five percent of it was bilateral and some of it was in other parts of my body like spine, arms, hands, legs and feet. I believe that it was all triggered by a case of shingles w/o the rash, in October. It followed a period of extreme stress and may having a week of indulgence in all things that I had associated as bad for me: sugary stuff, caffeine, chocolate and alcohol. Chocolate had always lowered my immune system, but I thought I had to be around someone who was sick —so I was unconcerned. I was just rebelling against all the stress and life full of dietary restrictions that no one else seems to have.

Anyway, the neurologist dismissed the idea that my TN could have been initially triggered as a result of shingles because it was “so rare”. When I asked if it was impossible, she said “No, it is just so rare that I do not think it is connected”.

So then...

Why do I still get other nerve pain with the TN flares??????

Also, has anyone else found a connection between their TN, or other nerve pain and their levels of hydration? In the last three (which includes the first episode —with epic levels of pain), I found that the pain started to gradually subside and shortly after cease to occur when I started drinking a lot more water (even around the clock). I believe being dehydrated may be the trigger of my last two flares —maybe even the initial one too). I do not have any compressed nerves or tumours hence the use of the term idiopathic. I had to MRI’s they were both normal. Even when their is a compressed nerve, they don’t really know for sure how the pain is connected since their are people who have compressed nerves with no nerve pain.

I suspect from my own experience that dehydration impairs the quality of myelin (the protective coating on the nerves). Maybe this is why so many people who have surgeries to correct it, end up having repeated surgeries still without success.

My first response now when the nerve pain starts is to just start downing lots of water throughout the day, and night if necessary. I am especially careful then to avoid any diuretics. Many drugs/medications are diuretics. Caffeine and alcohol are diuretics. Sugar also acts as a diuretic. I cannot help but suspect that being chronically under hydrated is a trigger for for nerve pain.

Trigeminal Neuralgia, Postherpetic Neuralgia and dehydration are all more common over fifty years old.

I have always had an issue with forgetting to drink enough fluids. Maybe it just caught up to me as I was approaching fifty, because the body is just becoming less resilient then.

[newma7]

Thank you for your post, InfoAddict. I'm sure it will be helpful to many of us who suffer from the malady of some type of neuropathy.

I too am sometimes forgetful to drink enough water; and, when I do, I feel the effects of dehydration in various ways, but had not tied my neuropathy to it.

My main point in responding to your post is that it makes sense that the lack of sufficient water intake...daily, at the very least, contributes to our neuropathy symtoms. From here forward, I purpose to be more diligent to drink enough water every day.

Good luck!

[InfoAddict in reply to newma7]

Thank you, for your reply newma7!

[Ben_Eckhoff]

Thank you for your post as well. I came across this as I was searching this very same thing. I was diagnosed last July with trigeminal neuralgia and mine is not from any compressed nerve. I’m on my third flare and I’m starting to see a trend that usually comes after I have had a week or two of a relaxed diet with higher alcohol consumption and much lower water intake....This also usually involves much higher amounts of sugary coffee and diet pop

[InfoAddict]

The good thing is, those things are fairly easy to control.

[Ontariomom]

I was diagnosed when I was 12. Now 33 I have had countless flare-ups. The only medicate relief I've found was getting pregnant when pregnant my symptoms just stopped. It worked 3 times. As to dehydration, I was 17 and had a really bad flare-up I also cut my finger and got an infection. As a result, I had to receive antibiotics through IV. I went into remission for 3 years. When I discussed the possibility of dehydration triggering the flare-ups the doctor agreed it is very likely. She then stated that because no one has studied this she couldn't just prescribe an IV for relief from the pain. Yes I agree with you 100% it is triggered from dehydration

[InfoAddict in reply to Ontariomom]

I’m so sorry you have had to deal with such a horrible condition for so long , and starting at such a young age.

I have learned so much about the Trigeminal Neuralgia that I have been experiencing. I have learned that it is linked to histamine levels in my body (dehydration triggers the release of MORE histamine in the body). Stress also significantly increases the release of histamine. I am also fairly confident that my issues with histamine are related to Mast Cell Activation Syndrome; unfortunately this is not something that is easy to get properly tested for or diagnosed for in Canada. I only started to uncover all of these connections when I tried Claritin for my TN, after reading about it in a FB TN group. I was very surprised to discover that the Claritin actually made a significant reduction in not only my TN pain, but a number of symptoms which I had not previously connected with any degree of certainty (like burning/ stinging eyes).

Since learning about histamine and Mast Cell Activation Syndrome, I have changed so much about what I consider a healthy lifestyle. I have adopted a low histamine diet, take specific supplements to reduce histamine and support the mast cells. Of course, hydration is always a top priority.

So, in my case Trigeminal Neuralgia was not a primary condition, but a symptom triggered by something bigger and more complex. Now that I know it, I have basically empowered myself to control it, without drugs or surgeries etc. The changes I have made have provided relief of so many symptoms which drugs and surgeries would likely never have done. Also, because it was triggered by histamine —- a surgery would I Kelly have failed to stop the TN. Medications were not even a safe option for me, but would likely have added to the histamine problem making it worse.

For me the silliest part of this dark journey was that I never even realized that so many of my symptoms were linked to allergies or my immune system. I’m just grateful that I I was tenacious about finding answers.

I do not know if your TN is related to histamine or mast cells behaving badly, but the fact that you have made the uncommon association between your flares as I had, suggests it maybe something at least worth looking into.

[BungaMawas]

Hi - I just read your post. You are the first person I have read about who's condition exceptionally like my own. I too developed TN after a period of extreme stress followed by what may have been occular shingles (or some other very odd eye infection that did not respond to antibiotics). If it was occular shingles, it too was without a "rash" which in my case would be blisters on my cornea. And I too know that my attacks are much worse and more frequent when I let myself get dehydrated. For years, long before I developed TN, I found Claritin or similar made me feel hugely better even if I had no allergy symptoms - for me it is like a mild anti-depressant. Do you take antihistamines daily or just when you are having a bad spell, or ????

In researching my idiopathic TN, I read a piece by the spouse of someone with Cluster Headaches (a condition not unlike TN) and apparently chugging large quantities of water kept that person from developing attacks or could stop them if they developed.

Can you please tell me more about your diet ? I'm currently on a very strict version of a Keto diet - developed for epilepsy. This diet excludes all sugars and other carbs and I can't drink alcohol (it is one of my triggers), but I do drink limited amounts of tea. I am wondering if the Keto diet works because it excludes many things that might make me dehydrated and not because it reduces inflammation which is the premise of why it works.

I look forward to your reply !