Anyone else? Trigeminal Neuralgia Fear!!!!

[Nini91]

Hey all,

I swear this Health Anxiety beast is no joke. I was bouncing around for a few months with the fears of ALS, MS, Parkinsons and MSA and I was recently able to get over it (sort of, mostly ALS Parkinsons and MSA), recently found out I have high cholesterol (I’m 26) and I’m not sure if it’s hereditary or because of my diet, I’m 160lbs and 5’ 6” so I don’t think I’m overweight lol. Since then I have been so worried about a stroke or heart attack as I have been suffering from an excess amount of heart palpitations mostly at night, but sometimes I get them throughout the day and sometimes they make me feel really weird, and a night just before I fall asleep I get this wave of numbness that effects my face (no drooping or anything, just very mild) and i wake up in a panic and run to the mirror to make sure I’m not having a stroke or a heart attack and it freaks me out. But recently with the numbness my MS fear has been creeping up on me again, even though I have had 2 neuros tell me I don’t have it and they even scheduled me to meet with the MS specialist on Dec 5th for peace of mind, but I read (yea I know) about some MS suffers getting Trigeminal Neuralgia, and this is a disease I’ve known about for a long time but just never had a fear of getting until now. I don’t even have any symptoms and I still freak out about having it. I have heard stories and actually watched a documentary about it on FB years back, which I am now really regretting that I watched it now, its so scary and excruciating that i don’t know if I would be able to handle it. I lost hours of sleep thinking a stabbing attack could happen anytime, out of the blue. Sometimes I think I’m being irrational because Trigeminal Neuralgia is rare on its own, and only 2% of MS suffers get it, but with my fear of having MS (with actual symptoms, but again I’m told I don’t have it.) opens up the fear of potentially having or getting Trigeminal Neuralgia. I’m not asking for a diagnosis just need to vent about this new fear....and I hope I’m not alone. This fear of this excruciating disease now has me up in arms all day, I really wish I could stop thinking about it.

[cattia]

Hi,
I have a friend who has this condition. She doesn't have MS, just the TN. She doesn't have health anxiety and she honestly doesn't let this affect her. When it first developed she had a hard time with it but it is now really well controlled with medication and she rarely has attacks, when she does the pain is controlled. She takes medication that you can use to treat epilepsy I think. She has been told that one day she will probably need surgery as hers is caused by two nerves compressing together and they will need to be separated but for the time being she's fine. She works full time, looks after her kids and has a really full and normal life.

[emmegee]

I think I commented on your other post about TN. I had it related to a tooth issue. The epilepsy meds really work!

[Nini91]

Thanks guys! Like I said I don’t have the condition or any symptoms of it, it’s just really scary to me. They call it the “suicide disease” and I’m like holy hell...I couldn’t even imagine!! But it’s good to know that it is manageable! Enmegee, do you currently still have TN or did it go away when your tooth issue was fixed?

[Josh1234]

I have it. Thank God it only flares up once every 5 years. It's by far the most heinous pain I've ever experienced. I normally have to be heavily sedated on narcotics for the duration of the episode, which for me is 5-7 days. It feels like youre being stabbed with an ice pick in your brain. Unless you've had it, I don't see why you'd fear it though. I fear it, cause I've had it.

[ServerError]

I imagine someone might fear it because it sounds utterly terrifying. I'm not saying they should. But that's probably why they would.

It sounds like absolute hell.

[Nini91]

My point exactly....it’s just a scary thing to think of, and with health anxiety the fear just bubbles, especially with my feeling like I have MS. Some suffers end up with the condition and the fear of ms brought up the fear of TN....not good. Just trying to tackle my anxiety first!

[ServerError]

It sounds like hell, but I don't fear it. I doubt it will ever happen to me, and if it does, I'll deal with it.

You know why I feel that way while you live in fear? Because my anxiety has been treated and I'm far more able to react rationally. Treat the anxiety and, eventually, you'll look back and wonder why you were sitting around worrying about something you don't have.

[cattia]

How did you treat your anxiety Servererror?

[ServerError]

More than happy to go into detail, but I will tell you now, there's no magic answer. I didn't do anything different to anyone else. I took meds, had therapy, and found a couple of books that resonated with me, and then I vowed to start living, no matter how I felt. That's it in a nutshell.

Take a look through my posting history. It might take a while, but it's all there, including a couple of blips I had to get through.

[cattia]

Thanks, one thing I have figured out is that there really is no magic answer. When I'm looking at self help books am Amazon and reading the reviews there are always people complaining that the books contains things they've heard before and that makes me realise that everyone is looking for some new or magic answer, but really it's more about consistently applying the tried and tested approaches that work. I loved the Claire Weeks book in my twenties and I recently found my old copy and it's still so useful today.

[ServerError]

Brilliant post, cattia. That sound you can hear is a nail being hit firmly on the head.

There will probably never be a singular "cure" for anxiety because anxiety will never be a single "thing" you can out your finger on and say that's what it is. We all know the common physical symptoms, and they can be medicated to an extent. But the reality is that true recovery is an ongoing journey of self-discovery and long-term change that comes with setbacks and bumps in the road and probably plenty of doubt along the way.

The closest things we have to a roadmap to recovery are CBT, the ideas of people like Claire Weekes and those who have built on it, and the ideas and principles contained within mindfulness. In my opinion, anyway. I guess anything that makes a person feel better can be said to "work".

[emmegee]

Thanks guys! Like I said I don’t have the condition or any symptoms of it, it’s just really scary to me. They call it the “suicide disease” and I’m like holy hell...I couldn’t even imagine!! But it’s good to know that it is manageable! Enmegee, do you currently still have TN or did it go away when your tooth issue was fixed?

Mine went away when the tooth issue was fixed. It is very painful but not as bad as labor IMO.

I also read the three worst "pains" a human can experience is trigeminal neuralgia, kidney stones, and labor.

The thing is... there are meds that are very effective now. One dose and I never felt it again, even before the tooth was fixed. I suspect before there were meds to control it it must have been named "the suicide disease".

[Nini91]

Mine went away when the tooth issue was fixed. It is very painful but not as bad as labor IMO.

I also read the three worst "pains" a human can experience is trigeminal neuralgia, kidney stones, and labor.

The thing is... there are meds that are very effective now. One dose and I never felt it again, even before the tooth was fixed. I suspect before there were meds to control it it must have been named "the suicide disease".

I’ve had two kids lol one natural and the other with meds, Labor was no damn joke!! Lol I appreciate you letting me know. I know that I need to tackle this anxiety, I have moments where I am completely fine and I’m like why in the world was I so worried and then I have moments where I’m like, “holy crap I have every disease in the book”. But I understand it’s a process! I can’t be disappointed when it sneaks up it just means I need to find better ways to cope and handle it.