My breakthru pain episodes

Archive Blogs (Read Only)
1

I haven’t posted in a while. I apologise for that, TN has been making my life a nightmare.

Twice in three days just now I had to phone for an ambulance, as a result of very severe, breakthrough pain from TN and both times they drove me to my local rural hospital. Previously, I’d had quite bad experiences there - with the Doctor on call telling me to go home and take an ibuprofen… Yeah, I wish…

This time, first time of the three days, was New Years eve - arrived at the ED just on midnight - Happy NY to me. The paramedics asked me if I took Oxycodone or Oxycontin, I take neither and said so. The pain level was a good 20 out of 10 at the least. I felt like screaming.

The Doctor at the hospital, who simply introduced himself as Kevin suggested a combination of Morphine and something I’d never heard of called Toradol. I don’t like what Morphine does to me, so said lets just try the Toradol. It is apparently a narcotic strength of Ibuprofen and is used for moderate to severe pain.

He injected it into the ‘muscle’ :slight_smile: on my arm and within minutes I was PAINFREE!! The injection burns, well feels like it burns. But I fell asleep shortly after. The second night there, January 2nd - had had to phone the paramedics at 3 am - different doctor at the hospital, but obviously he read the chart and didn’t even ask. He just injected the Toradol and again - PAINFREE!!

I cannot tell you how happy and how grateful this Toradol made me - all TN pain was gone and the pain disappeared within seconds.

Mind you, the hospital staff kept waking me up periodically to ask if I or they could phone someone to pick me up and take me home. The first night there - was New Years, and they were asking if someone could collect me at 2 am?? The second night I was there was the same, just was 4 am… I appreciate that, I was lying on a stretcher bed in their emergency ward. There are only 4 beds in their emergency department…

Toradol is a restricted drug. It is only available in hospitals, generally given by inj / iv. But for those breakthrough attacks it has made me free of TN for at least 8 hours. The TN was noticeable again after 6 hours, but only as a 1 or 2 out of 10. I really wish it’d stay that low too, but my TN has since been fluctuating wildly and here down under in Australia, it’s now 11:15 pm am my cheekbone has that stabbing sensation I’m coming to know only to well. I should try and get to sleep before it gets worse.

I wish Toradol was an answer - but it is NOT a prescription drug, as I mentioned is only available at the hospital - and is a very short term answer to. I’ve read up on it, and depending on the doctors use for it, is only between 2 - 5 days, it has massively potentially dangerous side effects and I’m not recommending or suggesting it as a definitive help for any of us in breakthrough pain as we all know different things work for different people - it may help others besides me, I don’t know - but for now it’s definitely a drug I wish to talk with my Neurologist about. I just wished to share my findings and double relief with anyone here who took the time to read my ‘blog post’.

For those that are curious - my daily meds are as follows: 400mg Tegretol, 800mg Tegretol XR (CR), 0.5mg to 2mg Xanax & 20mg Endep. The next are not related to my TN - 10mg Primolut & 20mg Lipitor.

I’m dropping the Endep. It was a med prescribed by my Neurologist, that I’d take with my evening dinner. My pains had been getting worse after increasing from 10mg to 20mg, and the timing of the breakthrough pain was coincidentally within hours of taking it. Even if I’d been in pain earlier prior to my dinner it’s just something I’m not taking the risk with any more. My Neuro will have to find something else for me to take.

Best wishes to everyone for 2009 and hello to the people I’ve not yet had the pleasure to meet here!

Kerry

2

Hello Kerry, I’m Margaret I joined this website a day or so ago. I had TN since June 2008. Like you I’ve been in and out of A&E over Christmas, because I’ve been climbing the walls screaming with pain. On 2nd Jan I had reflexology, and was shown how to get pain relief within 30 seconds to a minute… It works for me, with the stabbing in th ethe gums ,.hope it helps, don’t know how to work this site yet, so maybe you could pass the info to others. IIREALLY WANT TO HELP OTHERS GET SOME GOOD RELEIVE FROM THIS.

What I do is massage my BIG TOE (if people have pain on right side use right foot, if left use
left foot).
The part of the BIG TOE just below the bend (like the knuckle part on your fingers).
massage across there gently in circluar motion. Especially massage the left side just before the side of the BIG TOE (the right side if massaging left foot).
Give it a try, hope it helps you and others. Margaret

3

TO ALL ON TN SUFFERS ON THIS SITE
HAVE BEEN SHOWN HOW TO GAIN PAIN RELIEF WITHIN 30 TO 60 SECONDS.

I HAD REFLEXOLOGY ON 2ND JAN, AND HAD AN ATTACK AT THE TIME.
THE REFLEXOLOGIST MASSAGED PART OF MY BIG TOE AND THE PAIN STOPPED WITHIN 30 SECONDS.
SINCE THEN I’VE USED IT ALL THE TIME AND IT RELIEVES THE PAIN. DEPENDING ON HOW SEVERE IT IS, AND MINE IS VERY SEVERE IT CAN TAKE UP TO A MINUTE.
HERE’S WHAT I DO.
IF YOU HAVE STABBING PAINS IN GUMS LIKE I DO TRY THIS,
IF PAIN IS IN RIGHT SIDE USE RIGHT FOOT (IF LEFT SIDE USE LEFT FOOT).
MASSAGE THE BIG TOE BELOW THE JOINT (LIKE THE KNUCKLE ON YOUR FINGER)
ACROSS THAT SECTION, ESPECIALLY THE PART TO THE LEFT, JUST BEFORE THE SIDE OF THE BIG TOE, (IF LEFT FOOT, THE PART TO THE RIGHT). GENTLY MASSAGE IN CIRCULAR MOTION.
FOR ABOUT 1 MINTUE. I HOPE THIS GIVES SOME PEOPLE THE RELIEF THEY SO NEED.
GOOD LUCK TO ALL WHO TRY IT.
MARGARET

4

Thanks, Margaret. Can I recommend that you turn off caps-lock? Only because you have something valuable to say, but people tend to see ALL CAPS and think it’s spam.

5

Toradol is a great drug and it is prescription in Canada. I have been taking it for 4 years. Dr’s tried to take me off of it but it is the only breakthrouhg relief I get. It can have serious side effects but that is a chance I am willing to take. I also take 800mg or Topomax but lately it seems nothing works. I think surgery will be my next step but I am scared. The pain has been insane lately. I did have 10 months of drug free remission last year but thats the last relief I have had. Toradol was a lifesaver in the beginning but now I feel I am running out of options.

6

Thank you to everyone for writing replies to my post - I appreciate all of your input greatly!

Maeve, I agree totally. I went to see my Doctor yesterday because I thought there had been a mixup with my prescriptions, I’d asked for a refill script for, as Doctors office phoned me saying it was going to cost me $100.

Turned out, I’d still been written the script I’d asked for, however the Doctor decided she’d organise a script for me to have Toradol!! It is the Toradol that will cost me if I wish to take it.

But how can I refuse it? I’ve been given Toradol twice now after having paramedics take me hospital on two occasions in 3 days, and both times the relief was total and immediate!

But I did speak with my Doctor about my other meds, my concerns and told her I’ve stopped Endep completely. She’s also told me to stop the Lipitor for a fortnight too.

As for the Toradol - my GP says it’s all good and bad. Good, because every medical professional has told me, nothing can ever “stop” the pain of TN, only help you control it - where Toradol stopped the pain completely.

The Bad, because, well Toradol is first and foremost an anti-inflammatory. Like ibuprofen. So, that indicates that whatever is causing my TN, the attacks etc., is likely of a flammatory nature, that there is swelling occurring somewhere so my TN is possibly never likely to be a surgery candidate.

I keep an eye on my meds that I’m taking at any one time, side effects, co-intradictions, conflicts with foods or other drugs I’m taking on a website called drugs.com they have a members section called Mednotes which is absolutely fantastic for keeping records, you can make printouts for keeping in your purse or wallet of your medical conditions and medications etc., I would recommend it to all of us.

Thank you Maeve, here’s hoping 2009 will see our shared pains go away!!

Kerry xx

7

Hi Margaret, and welcome to this great site Ben and Scott set up for us. I am sorry that you have had to join our ranks, but I think you’ll find you’ll fit in very well. You’re a Saint for wanting to help others, especially so soon after learning you’ve got TN yourself!

I thank you for your very helpful advice, I’m still practising your suggestions, I don’t think I’m getting it just right yet though :slight_smile: but I’ll keep trying. I had some reflexology as part of a therapeutic massage session once. When she began working on my feet, I did feel great - she was aiming for the TN areas there too. But, after I left - it deteriorated very quickly into face pain once again.

I haven’t given up, I’m seeing my Dad’s old Doctor, an Indian Doctor about an hours drive who has several master’s degrees in medical acupuncture, laser light therapy etc and will begin a series of treatments with him also. I am hopeful, and will remain positive because - well, we simply have no choice other than to remain positive and - just try.

But again, welcome aboard our little club - I have to say the TN community is a group of the most warm, supportive people I’ve had the pleasure and gratitude to meet!

Kerry xx
PS: Best wishes for 2009

8

Allyson, Thank you! I’m glad to hear another person with TN has used Toradol so successfully, however much benefit, however long I can get it for, I am now more hopeful to hear of your success with it. I had never heard of it till just this week.

I am so Sorry though to hear that you have been getting so much pain recently again! But it must’ve been wonderful having had a 10 month vacation from this monster? Sounds great to me!! I haven’t had that much grace, not yet (hopefully I will someday). But then it comes back :frowning: I’m sorry.

Yes, I too am willing to risk side effects, I know they can be bad - but the same risks seem to apply for most of our medications. The risk must be taken, controlled risk application hey :slight_smile: but it is something I will try. Two uses of IV Toradol have not had anything but good effect so far, so hopefully, this won’t change for a while yet.

Best Wishes for 2009
Kerry xx

9

Hi Ro,

Thank you for my well wishes, I understand well the problems with getting meds that we can afford.

In Australia there’s been a massive boost to have everyone on private medical insurance. I am not. I am in the public system, but I am very thankful that many of my medications are covered under our Medicare system and I only have to pay cost on most of my meds.

I hope you can get meds to help you Ro! And that your Neurologist and Insurance company can get it together!!

Best wishes to you for 2009!! May it be pain free!!

Kerry xx

10

I’am scared for you too! My acupuncturist keeps gently suggesting yoga and meditation TOO!!! It’s the last thing I want to hear while I’m in agonizing pain. I just want someone to give me a pill to make it stop, then maybe I’ll discuss other options.
While vacationing in Mexico over Christmas I watched a program on the nervous system and how and why the human body transmits pain. It was fascinating and for the first time I understood why everyone is harping about Y and M . . .
Meditating lowers your heart rate and enables you still to HAVE pain but not ‘feel’ it.
They even had a guy receiving a root canal with out freezing! huh??
Apparently you can choose to think other thoughts to take you away from the obvious trauma you are going through, and in this state feel virtually no pain.
That how the chinese monks can walk on hot coals etc . . .
I know easy for me to write all this. When all I would want is a FAST solution!
If I wasn’t so lazy to get my ass to a class, I could then tell you how it feels :slight_smile:
The last two times my pain so over the top like 50 out of 10 , I went to my GP
daily until her secretary cancelled my appointment and said Dr. P cannot offer you any help
at this time, she will call you when she can.
THAT was the lowest point in my life ::((
I had to take things into my own hands . . . I showed up without an appointment to my neurologist’s office. He was off for the summer!!! and would be back in Sept . . . it was now June 29th
I sat in emerg waiting area and cried and cried . . . It was long weekend and I knew I’d be sitting there all weekend.
I went home.
( the story goes on and on . . . ) not tonight though

WHEW!

I hope you have found some peace, and moments of faith and good feelings :slight_smile:

miss a