Why doesn't anyone listen?

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#1

I started experiencing a "different" type of headache last week. Saw my PCP and was put on predisone. My temporal artery is pulsating out when I lay down and now sit up and that's where the pain is. It's on my TN side which is already numb from surgery and gamma knife. I recently had a steroid block 2 1/2 weeks ago. I have had TN 1 and 2 now for 20+ years and never been to the ER. I had to go Sunday, but still, no one listened. They said it was my TN. i've had cluster headaches, you name it. It's not like this. I saw a doctor yesterday who spent maybe 8 minutes with me and again, didn't listen when I said, it's not neuralgia. I finally asked if they could do a CTA to see if something is wrong. This doesn't make sense. I'm trying to work but it's extremely hard. I would be home but don't have alot of time since I started the job in June. I fell this morning, just lost balance, felt weird. My husband drove me in but I wish I just had someone, besides him, that listened to me that was a doctor. I'm concerned because I don't know what this is. Anyone at all know? I was told it couldn't be temporal arteritis because of my age. Well, at 14, I was told I had TN and back then, it was unheard of.

Thanks for your ear.

Rachel

#2

Rachel,

I'm so sorry people haven't been listening to you. Did you get an answer that was satisfactory? If not, have you considered going to a different hospital?

Beth

#3

I have yet to hear about my CTA. I just really don't know what to do. My neuralgia has returned with a vengeance and my next block isn't for another month. I'm sleeping 3 hours a night from double pain from it and the throbbing artery. i just don't understand what's wrong. To top it off, I've paid $400 in two months for meds and have a $200 deductible but when they called in one of my meds it was over $100 that I have to pay because the company said they only take out small portions towards the deductible. I'm so strapped financially already. Just at my wits end with pain.

#4

That's awful. I'd be concerned enough about the bulging artery to go elsewhere, though. Seriously. Although, have you done any searches here on bulging arteries to see if others have experienced it? Also, have you considered surgery?

Beth

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#5

I went to one doctor here at the hospital I work at. He doesn't seemed concerned. My CTA came back normal. But no one can tell me why it's doing this and why the pain. All points to temporal artertitis which they say I don't have. I had the TN surgery when I was 16. I had a bad car accident at 14. I had gamma knife in 2014 that helped but now causes burning of my face and one of the nerves is still active from the branch so I get shocks, etc. But this pain on top of it is just so hard to bare and work. I started a lower stressed job in June so I've exhausted my sick time already almost from the past several weeks. I have tremors. I have a toddler and am married so my husband helps but I can't keep going with this type of pain. And, my new neurologist doesn't listen, he gives me one word answers but they have ALL of my records from 14 years ago. So, I don't know how to find someone that treats this or have to start over.

#6

My latest flare up I had the bulging vein also and it was a very scary ordeal. I feel your grief. I got clay cold packs from the Dollar store and kept rotating them on and off, trying to do anything to make sure to do what I could to keep that artery from being flared up. Dealing with that and everything else that comes with a TA event is no fun. I hope you get some answers soon. I'd like to say the doctor helped me, gave me some magical medicine, but It just ran it's course. I'm so sorry. But I'm here. I'm having a good week and hoping for a good tomorrow.

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#7

I have changed hospitals now. I met with the neurosurgeon that did my surgery as a teen on Monday. He wants to run tests and seems concerned about my pain and the artery. I'm usually one who can get through anything but even last night, my hair felt like it was shocking me. Everything is too frayed that anything sets it off, just laying down does. He doesn't know how I'm working, I don't either. Mainly, I need the money and benefits. My husband is driving me because I can't right now, just too much pain. I just don't know where to look for a new neurologist since so many do not treat TN unless it's underlying MS. And, I don't have MS. The artery to me, is scary, it pushes out, affects my physician and is very painful on it's on. But I'm told it's swelling and could be either wrapped around the nerve or vice versa. Thank you for listening. I have my husband but he feels powerless and I just needed someone to vent to because I haven't been pain free for a while. I'm not depressed, just the pain makes depression hit.

Rachel

#8

I feel your pain, Rachel, both literally and figuratively. I started Trileptal a week and a half ago. It wasn’t touching the pain, but I wanted to give it time to start working. This morning I woke up with a petechial rash on my hand. I’ve just about run out of meds to try, and I still have pain.

The sad part is that I don’t have health insurance right now, so surgery isn’t an option. I feel like I don’t have many options at all at this point. I will see a new pain doctor in a few weeks in Portland, and I have an appointment at Tufts to see a facial pain neurologist the last of the month (I’m hedging my bets by making two appointments). I figure if the one in Portland is good, I can cancel the Tufts one, but if not, I have a second option. But all of this is out of pocket. Even if I can’t pay everything at once, I’ve accrued enough bills that the monthly nut is becoming overwhelming.

So, I use ice a lot (I go to sleep with it on my ear/jaw, and I wear it on the bad days … wear it all day, in fact. On those horrible days, I take Vicodin and baclofen. But my neurologist refuses to give me more Vicodin because studies show it doesn’t help. I’m here to tell you that if I use it on an occasional basis, it helps. Ugh. I sleep when I’m on it, so I have non-days, when the meds keep me sedated, but that beats the severe pain.

I’m sorry I’m venting. I just feel overwhelmed sometimes with this horrible disease.

Beth

#9

Skippy,
I’m so glad you changed hospitals and that your previous Neurosurgeon is concerned enough to run tests, etc. I hope it’s something else, something that is more acute than chronic and something that can be fixed.

Was your TN type 1 up until now? I only ask because when I first got TN (18 years ago), I kept describing it as a “weird headache,” because it started in that branch behind my eyes (as opposed to the 3rd branch in the upper and lower teeth and jaw area) and unfortunately it sounds like you might be developing TN 2 or ATN, in addition to your TN 1, in the first or second branch.

Obviously, I’m not a doctor and I really hope I’m wrong, but your description of a “different headache,” caught my eye and I thought I’d weigh in, even though it’s NOT what you’d want to hear.

Good luck! Both types of TN really stink, but having both together is really overwhelming. I hope that’s not the case here!! If it is, I hope you find some relief soon. I also hope you find the resources you need, both out there in the physical world, and here on this site!

Best Wishes,
~Christy

#10

So sorry for your experience. I learned from my husband if a doctor isn’t listening or helping then fire them. They work for you not the other way around. It can be overwhelming trying to find someone but worth it in the end.

#11

Hey Skippy
How are you now?
My facial neuralgia(still don’t know what)started around the same time you first posted and I only recently found this site.I am so hoping for good news for you.

#12

Christy,

It was Type 1 up until gamma knife that apparently went terribly wrong and set off Type 2 so I have both. I’m not better. I’m now on disability at age 42. I mean, I never would have thought it would be so bad that I couldn’t do just normal things, bathe my son for one. I’m still in constant pain unless I’m asleep so I take a ton of pills some that mask symptoms like pins/needles and I sleep 3-4 hours during the day and am sick for a total of 6 hours from the meds getting back out of my system. I wish I could just have a second MVD which I was told it was impossible. But again, I’m still looking into other neurosurgeons. I’ve found one in Atlanta that I’m sending my information to this week after seeing my neurologist. My neurologist put me on the pain doc’s shoulders. Love being dumped around. The pain doc even says there’s nothing left to try. I’ve done very strong narcotics but I have adverse reactions so they don’t help. Thank you for reaching out to me. :slight_smile: I’m still here, still going.

#13

I wish I could say better but I’m not. I’m at home now on disability at 42. I never would have thought that. I keep hanging in there even when it’s at its worst. I almost just gave up last year but hung on for my son (he’s 5). I couldn’t leave him without a mom even though he’s got a great dad and I have a great husband. My husband gets it. That’s about all who do. I was dumped to a pain doc after my neurologist said he still needed to see me but the pain doc is who I must get my prescriptions through. Weird thing is, I’m not on narcotics. Lord knows they’ve tried them but I always have adverse reactions to them. But I guess the best news is, I’m still here, and take life minute to minute on worse days and keep my focus on the day that I’ll wake up and the pain is gone. Thank you for reaching out to me.

#14

Beth,

I hope you’re doing better. Nothing pain wise has changed with me. I have bad and worse days. But I’m still going. Day to day, minute to minute on some days.
Thank you for reaching out. I do hope they can help you. Baclofen never helped me. Zanaflex has been my lifesaver at least for the spasms in my face.
Take care and thank you for reaching out to me.

#15

Haven’t heard of clay cold packs? I have four ice packs that I rotate through the day and night. Thank you for reaching out to me. Not much as changed. Pain is violent as it usually is around this time.
Rachel

#16

Hi Skippy
I am putting peppermint essential oil along my jawline and it brings the pain down a bit.I had tried it mixed in a carrier oil but it did nothing that way and in desperation tried it straight .
Geranium oil is supposed to help type one.Both these essentially oils are relatively cheap and smell nice so maybe you can give them a try.
I am getting a new oil called panaway this week and will let you know how that is.
Doctors are running scared now and I am on such a roller coaster with one saying one thing and getting bounced to another one and then new stuff(unrelated) showing up in tests.
Wishing you health and happiness and a chance to really enjoy your little one.

1 Like
#17

Beth —

You can find medical journal publications about how vicodin DOES help with TN2. I don’t know what kind of relationship you have with your doc, would he/she be open to you showing up with studies to prove him/her wrong? My nuero gives me vicodin for TN2 flares without hesitation. Here’s a link to one such article: https://paindoctor.com/conditions/trigeminal-neuralgia… I used it as a support med in combination with daily meds and so on and I believe that’s important as well, as front line treatment straight pain meds are basically proven not to work but they can work as part of a support system/care plan. I can’t say enough about the lidocaine patch, either. I started using it about 8 months ago and it’s changed my life for the better.

#18

I can’t find the article you posted. I’ve tried nearly every strong narcotic and none work or they effect my heart. Vicodin especially scares the crap out of me because it caused my mom to have a massive heart attack at age 49 and she died in my arms.

#19

Yes, Azurelle, that link is giving me a 404 Not Found.

Seenie

#20

Here you go (I also fixed it in the previous posts):