I'm so glad to have found this group!
My situation is a bit off. I actually had never heard of TN until a few weeks ago. My twin sister told me that she believes she has TN Type 1 and has had it for at least 6 months (she thinks from some serious dental work she had done on the left side of her face). She hasn't gone to a doctor to get an official diagnosis yet (I'm trying to convince her but she very anti-doctors and prefers the holistic approach) but the symptoms match what she's been going through to a T. Since she prefers the holistic approach, she started taking cell salts and she says it really helps her with the pain. That with a few dietary changes and avoiding crunchy foods and saturated fats and she has been doing much better (at least until last week when I last heard from her).
For myself, I think I might have TN Type 2. About 3 weeks ago, I started having some aching in my sinuses on the left side of my face, near the back of my cheekbone, down to the ear and upper jaw and sometimes in the lower jaw too. It wasn't the sharp stabbing pain that many people with TN describe but more of a throbbing ache that was definitely persistent though not excruciating. I took ibuprofen (Advil) every 5-6 hours, which did help with the pain. I thought it might be related to migraines, as I've been dealing with migraine headaches since I was in college, though I didn't have any headaches now. After 5 days when it didn't go away, I thought it might be a sinus infection so I went to see a doctor (a big deal for me, as I don't like doctors either and haven't been to one in 2 years). He diagnosed me with seasonal allergies (which is a bit odd, since I've never had them before and I don't have the usual symptoms such as watery eyes and sneezing) and gave me a prescription for nasal spray and antibiotics, though he said I should take the antibiotics unless I felt very bad (like a fever). The nasal spray helped the first day but after that it didn't really help. I've continued to take Advil and it does help with the pain but it hasn't gone away. In the last few days, it seems to have gotten worse so that now I do get periods of stabbing pain that last quite a while. Last night I woke up at 4 a.m. with the stabbing pain and took an Advil. It didn't go away until a few hours later.
Unfortunately, I'm right now in the process of changing my health insurance and looking at some possibilities for a new PCP so it's going to be a while until I can go to the doctor for a diagnosis. I don't want to go back to the doctor I went to before (basically chosen out of the provider list for my insurance, as there is no one around here who can recommend a doctor), since I don't think he took it very seriously. I'm going to try the cell salts that my sister recommended to see if that helps as well as make some dietary changes to see if that helps also.
I've been doing research and I know that the options are medications and surgery. I really really really do not want to do surgery and I'd rather not be on meds if I can help it, which is why I'm exploring holistic options. I still don't know for sure if I have TN but it's hard for me to believe that this persistent pain is just allergies.
Hopefully I can get some support here for myself and also for my sister.
I'd offer my two-bits for whatever little they're worth. This is based on 19 years of reading medical literature as a technically trained layman, and interacting with literally thousands of people who are dealing with chronic neurological face pain. My wife is one of them.
First, I'd say that it's unusual for Advil or any of the over-the-counter anti-inflammatory meds to have any effect on neuralgia pain, at all. Even the opioid meds frequently don't. The pain levels and patterns that you initially describe do seem to match up fairly well with sinus issues or allergies. If your pain levels continue to escalate, then it would seem smarter to overcome your resistance to seeing a medical specialist, and get referral to a neurologist who regularly treats chronic face pain. The Doctors tab in the menu above might give you a start on finding somebody recommended by other members of this site.
Second, I must voice my reservations about so-called "holistic" medicine. There is an awful amount of hype circulating under that label. A doctor whom I have reason to trust from long acquaintance once remarked that every time he hears the word, he checks his wallet because somebody seems to be speaking a deeply strange version of medical science.
From what I've read over the years, dietary changes probably don't hurt anyone unless they're seriously purging the bloodstream or lower GI tract. But whether "cell salts" actually help anybody more than an outright placebo (inert pill), I've never seen demonstrated in medical trials. Something might indeed be out there, but I haven't seen it and I candidly disbelieve that the science in such things is at all well established. Maybe that isn't important to your sister. But if her pain continues to develop, then she may need to seek out a knowledgeable neurologist to get accurate counsel and assistance.
I wish you both well.
I appreciate your response. I'll admit that I did have resistance to seeing a doctor but I'm not fooling around with my face pain and it's on the list to go see one as soon as I change PCPs.
I understand your skepticism with alternative medicine, but I personally believe in it and have found it to be useful. Maybe it's a placebo effect, but whatever it is, if it helps and it's less about popping pills or having surgery, then I'm all for it. I was also skeptical when my sister told me about the cell salts but it's a reality that she has had no TN pain since she started taking them. Others have found them helpful. I started taking them last night and so far they have really been helpful in reducing the pain. So it's hard to dismiss that kind of personal experience, though I get that it won't work for everyone.
And BTW, I read on another board that there was one person who said he was taking Advil (though in higher doses than I am taking it) and it is the only thing that helps him. So I don't think we can automatically discredit what will or will not work even if it doesn't help most people. It's just another reason why treatment for any condition is individual :-). Having said that, I started with the cell salts because the Advil stopped working for me, so that says something.
I mentioned the general performance of Advil for two reasons, Tam. The most important is that you don't want to exceed maximum recommended daily dose, because this over the counter med can cause gastric distress in some people. The lesser reason is that if it works, many neurologists would tend to look for some secondary issue other than TN in your medical profile.
I suspect many TN patients may have a similar attitude toward alternative medicine. I've talked with many who have tried chiropractic adjustment or acupuncture or Vitamin B-12 or low-inflammation diets. The general trend seems to be that such measures help some folks and not others, for reasons that aren't usually clear. Anything in this range of techniques can be over-done, and it's wise to have oversight by a well trained neurologist when using such techniques. But whatever works for you is a plus. Your experience is your experience. We can't always generalize to other patients, of course. But the site owners emphasize patients helping other patients by sharing their personal outcomes.
I've always found the term alternative medicine to be vaguely amusing, and the term holistic to be the solution for many diseases, why should that be a problem? Sure some practitioners may exploit it for financial benefit but the overall premise is not unreasonable, private medics don't exploit for financial reasons? Your potential builder? It's everywhere. Alternative medicine to what? The GP who gives you blood pressure pills, and reduces you blood pressure, well done but has he addressed the original cause, no, otherwise you wouldn't need the pills. Big pharma has made proper medicine the alternative, and such we have a whole western population in denial as the cause for their illness. A quick fix, blame taken away, we'll take it. Let's cover the symptoms. This unfortunately is perpetuated through money, ie where is the evidence base? Who are the only institutions who can afford it along with their advertising money? They get to perpetuate the myth, real medicine then in the psyche of the population takes a back burner. We're arrogant enough to think when we can make a pill in the lab to cover symptoms, we have beaten nature who built us, are we really that stupid? Alternative medicine, Red, is the medicine, but also open to financial abuse.
Moth, I think you may have intended the idea that "alternative" medicine is still medicine, and if so I would agree. Any foreign compound or procedure introduced to the human body for the purpose of healing or strengthening health, is by definition "medicine" if it has any effect at all.
Your experience and mine of so-called "holistic" medicine are probably somewhat different. Over the years I've talked to a lot of people who found no benefit from practitioners who emphasized the term "holistic". That said, any influence which prompts patients and doctors to examine the total health picture rather than simply slices of it, is probably a plus. From reading and observation, I've noted that effective GPs and Internists often manage to do quite well in this larger framework, even if they make referrals to specialists when they are unable to definitively figure out what is going on for a patient.
Your point on blood pressure also serves to illustrate a third point: ultimate "causes" for observed medical issues are sometimes not fully known. This is certainly the case with a large proportion of patients in whom blood pressure is elevated. A doctor who is willing to acknowledge that he or she "doesn't know", can be a real treasure if it leads them not to over-treat people with medicines that have side effects. A lot of conditions can have imprecise or unknown causes (TN rather often is that way). So it seems quite appropriate for doctors to try different therapies and observe whether symptoms improve, at least part of the time.
I agree with what you have said, but I do find it a shame medics look to the action of drugs without considering a patients lifestyle ( on the whole).Disease has a manifestation potentially over years, and hence a patients expectation for a change in life style to act on their symptoms 'over night' is often unreasonable. I do accept that control of symptoms to be of benefit, but a consideration towards both symptoms and lifestyle would be the magic mix, but is often ignored. As for foreign compound, why does it have to mean foreign in the context of health, proper diet/ health care is far from foreign and is often lacking, I would believe optimisation of diet and hence everything that nourishes a dysfunctional cell of prime importance, be it cell salts or otherwise.
Good morning friends,
I will add my 2 cents here on a most basic level. I garden organically, use no chemicals on my yard anywhere, buy organic produce when I can’t grow my own and I general live my life in a way that allows me minimal exposure to toxins. But when the pain of TN struck me I ran full speed to a doctor and was very willing to take whatever medication I needed to for getting pain relief. This was done with a great amount of sadness on my part as it went against all I strived to be but it was necessary to get relief. I am thankful that medication, with all it’s toxins and potions, can me some relief.