Pain daily and getting nearly constant - no relief .. I'm scared

It is now the 11th of January here. It’s 6:20 am. I am very scared. I live alone and my TN this year is getting worse and worse on a daily basis.

I spent the turn of the New Year in the ED. Two days later I was back again.

Since then I’ve had attacks nearly daily, and have lost count of how many times this monster has attacked me.

Nine out of the past 11 days, I’m getting very bad attacks. They’re lasting several hours at a time.

The ED gave me an anti-inflammatory that “worked” it took all the pain away, but after it wore off, the pain crept back in again.

The ED told me this “Toradol” wasn’t available outside the hospital. My GP has since provided a script for both the tablets and ampoules. In the last 30 hours, I’ve had to take 6 of the 10mg oral tablets. Along with 100mg Tegretol, 200mg Tegretol XR & a 0.5 Xanax every 4.5 hours. The relief may last 2 hours, but then it comes back with intensifying pain.

I don’t know what to do with the ampoules. They’re encased in solid glass, I don’t have any needles and even if I did, I cannot for the life of me, imagine sticking a needle in myself, in my upper arm… So they sit in the fridge…

If I phone the paramedics, they won’t just use my inj, they still have to take me to hospital.

I’m scared because it’s never been this bad before. I feel like the attacks now will not go away, the are much more painful than ever before and …

Yesterday, the pain attacks came and went to way past double even triple my bearable levels and when I took my meds, delayed reactions as usual from them, but the attacks were back within 2 hours, giving me only a half hour of relief here and there. Relief as in, the pain would drop back below a 10. Maybe to 8/10.

I knew last night would be bad - it was. I managed to doze off by 2 am and was woken at 4:05 am. This time, BOTH sides of my face were in tortuous agony. I took the pills and by 5:30 am the pain went back to a 2. I still couldn’t sleep. It’s 6:35 am now. The pain is returning. It’s a 10/10 now and climbing!!!

It has still returned on both sides of my face. This should be impossible - everyone (medically) and striking back, say this is not possible, it’s only 1 side at a time.

Putting up with one side is bad enough. My face is in that much pain now, my neck glands have swollen up in response to pain in my face, while swollen they are painful. This serves only to make the pain in my face twice as bad…

I am now feeling pain in not only my face, but my neck & breastbone, so I am even more petrified now that something else is happening to me. I cannot touch even briefly, any part of my face! That spikes the pain level. Please help me!

I don’t know what to do. Should I phone the paramedics again??

Thanks for reading ~ Kerry

Hi Kerry,

Yes phone them now. You can’t be expected to carry on with so much pain.

Explain about the ampoules, they can probably give you one straight away and monitor you on the way to the hospital.

Lots of Love,

Jo X x

Kerry…yes please get some help. A body cannot take pain like that for long. You should insist that you be in the hospital with an IV of something and medical supervision until this pain is controlled.I did it last year when I was in constant pain for 4 days and I’m ever so glad I did. Your body simply cannot handle constant excruciating pain for a long perioud of time.
Get some help Kerry. Much love and prayers, Judy

Hang in there Kerry. I didn’t see this until much later in the day. I hope you went to the Emergency Dept. My thoughts and prayers are with you.

Kimberley

Firstly, thank you so very much to you all - Jo, Judy, Maeve, Ro and Kimberley!

It’s been a horrible time and I’m still very angry now. The ambulance was quick, and beat my sister here by mere minutes, I phoned her after I called the ambulance emergency line - she may as well have driven me. She lives 1 block away from me, but I did wake her from a Sunday morning sleep-in. It was the first time she’s seen me in such pain. Bit of a shock for her, but I’m glad I have another family member who understands.

The ambulance was the most bumpy vehicle I’ve ever been in, every bump in the road was another spike of pain in my face… And the paramedic kept trying to talk to me the whole time, nearly learnt the mans life story. This new paramedic didn’t know the “code” to get in the emergency door, so I had to walk in the public entrance after getting an ambulance ride there. The pain being on both sides at once and more than excruciating was getting to be more than I could bear and I felt like screaming, yet even trying to talk was just awful.

My resting pulse rate is around 76, and my TN pulse rate was 99 - they did this again twice and then asked me to go and sit in the waiting room. Geez, the last two times I went in (middle of the night) I was put straight in the ED in a treatment cubicle and immediately administered Toradol which had helped me at the time straight away…

My sister helped me walk to the public seating area as today, no such luck - I was later seen by an intern Doctor there, who because the pain had been such a long duration, immediately told me that was not what TN was, so he insisted I do not have TN. My Diagnosis has been confirmed by a GP, 2 x Neurologists and 1 Neurosurgeon… I got angry and started correcting him, not the best move - but I had now been waiting so long for treatment in this pain state and then he went to examine / touch my face, and I reeled backwards so quickly I nearly hit the back of my head on the wall behind me! And I wasn’t even wearing my glasses, couldn’t as the arms of my glasses were sitting on a trigger point… But I’m glad I could see him coming :slight_smile:

Twice I had to wait as he went over my meds and insisted that I was there for dizziness and not pain… I had told them I was light-headed from pain, I did not tell them I was dizzy. Even my Sister told them I was there for pain from the TN… Daft buggers, all of them!

This Doctor, would you believe, still not offering any treatment - told me I should take up Yoga and Meditation!!!

So, two hours after I arrived at both mine and my Sisters repeated insistence, they finally “supposedly” gave me the Toradol. He did not want to treat me. I did recognise him as the Doctor I first saw at this hospital 25 April, 2008. That day he’d sent me home with no treatment too, telling me to take an over the counter ibuprofen and get some sleep… I will be writing a letter, after I get my GP to access my records from this hospital… I see her tomorrow!!

Sorry for this outburst - I am hurting and very angry. Because whatever they gave me is having only a partial effect and because my glands both sides of my neck are still swollen and hurting I know the attack will resume this afternoon or tonight. It is now 2:15 pm.

My Sister drove me home and stayed with me for more than three hours. My Mum will come by this afternoon and stay with me overnight, so if needs be - she can drive me to the City hospital instead if things do begin to deteriorate again.

As the pain I’m feeling hasn’t gone completely away, so I would like to find out exactly what they gave me, as I did not get the benefit today as I did the previous two times and I think I was not given what I asked for because I made this stupid dunce of a Doctor angry - he knew nothing about TN. And in my anger I corrected him :wink: oh well, I was in pain and he was simply very stupid! I was very nearly swearing at him out loud, I simply resorted to doing this in my mind and making rude gestures when he left the room :slight_smile:

I still have pain in the glands, both sides of my neck. The more I talk the more my face hurts. The upper part of my cheek bones still radiates a pain that’s around a 5/10. I will not return to that hospital if I can ever help it.

I hope this makes some kind of sense - I don’t feel that I am - but I hope you can understand it.

Thank you again, all of you! It makes me feel much better reading your thoughts and comments - reassuring to speak with others who can offer ideas and personal experiences that greatly help me!!

Wishing us all well and pain free times!!

Best Wishes and Thanks ~ Kerry xx

Kerry, I know exactly what you are saying, however I have been very stubborn about going to the hospital with pain. I have been very lucky and I have had great Doctor’s. I just spent 3 months in Pennsylvania and just could not take another minute of the cold, it was controlling my life. Once the pain sets in there is no getting rid of it until it wants to leave!! I have found that staying away from garlic and onions will help. I am very careful as to what I eat and I pay attention to every thing I do, eat or drink to see if it triggers my T.N., it has been somewhat helpful. As for the pain meds I do not see that they do me any good at all. They actually seem to intenseify my pain. Keep your chin up and try not to be alone so much. Wanda

MSG gives me migraines. might have other affects. definitely worth checking out.

To begin I guess from Ro mentioning about Heart rate. I consider my HR would have been higher had I not for the previous 12 hours prior to hospital treatment, been taking Xanax as well as my other meds. My Neuro prescribed it to assist in the reduction of over zealous nerve firing, but it is predominantly an anti-anxiety / anti-panic attack medication. I would imagine one of it’s effects would have been to “calm” my heart rate too. I’ll try it next time without the pacifying assistance of Xanax and see if that increases my HR :slight_smile: An experiment only - to me a higher HR
is of no consequence… I just wanted the pain gone.

Though, admittedly I think the Xanax helps when I have an attack. Last night when I had another attack at home, all I took to combat it was a 0.5mg Xanax + 10mg Torodal tablets. I did not take the Tegretol or any other of my meds. An hour later, the pain vanished - thankfully, as it was 3 am by then and I was exhausted as I’ve not been getting any sleep lately.

I have a very high pain tolerance. I’ve been living with pain since my early teens in multiple forms, but nothing is compared to the pain that TN gives us. In saying that, I’ve been living with TN pain now for around 14 years - and never, never has the pain been more excruciating, or attack for such a long period in one session. It has now gotten to the point that I only wish to black out, and feel my body on the verge of doing so - but my body betrays me and I stay conscious. To stay at this high level of pain continuously, and for the TN to keep adding spikes of different kinds of pain on top of it, for it to then activate on BOTH sides together…

Wanda, Hi! :slight_smile: I don’t like going to the hospital any more than the next person. I’ve resisted the urge for a very long time, many years, but lately after monster attacks lasting at least 12 hours of pain as this has been lately, my resistance generally caves in… :slight_smile:

As for diet, I live in the country, I don’t eat take away or pre-processed foods. All my meals and other food are cooked and prepared by me or by family members from scratch - fresh produce, fresh meat etc and I check spices and herbs for MSG on purchasing. It’s law for them to declare MSG ingredients on any food packaging here in Australia due to it’s negative health effects on many people, especially asthmatics.

Food triggers, do become an issue for me - in respect to chewing as a trigger. I stay away from food products that are tough to chew, for sure. I eat a lot of beef mince and chicken with occasional lamb. The chicken can be cooked so tender it melts in your mouth. Basting chicken with lemon juice is a sure fire way to keep it nice and tender.

But I agree, people should be very careful about what is in their food. I know many people who due to busy lifestyles prefer to purchase the pre-prepared foods, including my brother quite often - and I agree their convenience is fantastic, especially when you don’t want to, or feel like cooking. It’s just not me. I prefer to cook 2 meals on a Sunday night that will keep me fed for most of the week.

I remain positive and will continue to do so as much as is humanly possible. As for being alone - well, I live alone … And in a rural community. I have one remaining friend, that’s where you learn who your true friends are is when you get sick with something like this… My mother stays over 1 night a week and my Sister - well, she and her family just moved in a block away just over a month ago. So I have family nearby, my Mum and Brother live 45 minutes away.

I saw my GP yesterday, for my regular blood tests. She suggested that I bring the ampoules of Toradol into her office. If by chance I suffer a major attack during the working hours of the working week, the paramedics can drive me to and from her office to get the injection. Without my even having to get out of the ambulance.

It’s 3:20 pm and I have to go out now. My Dogs are running out of food supplies and I have to buy my remaining friend a birthday card.

Thank you to all of you - I apologise if my tone is off, I have been having spikes of pain come and go all day today and had a ‘moderate’ attack last night. I say moderate because though excruciating - it went away by itself after a Xanax and Toradol and I then slept for 10 hours. So I actually feel quite irritable because of all this pain just coming and going. It wrecks my day. (wry humour)

Cheers and Best Wishes to all!

Kerry xx

Hello Kerry, I’m Margaret Harrison, had TN since last June, I had reflexology a couple of weeks ago, and was shown how to stop the pain when it starts, if it’s jabbing pains inthe gum.
On the front of your big toe just below the joint , just to the ,left before the dide of the toe, massage in circular motion, for about 30 seconds to a minture, it should stop the pain, and givce you some relief. Good luck with it.