I hurt and I'm freaking out - I'm sorry, this post is a downer and what I have to say is scaring me

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#1

I had a decent day, few zaps here and there - so gladly postponed my dentist and then got a hair cut instead…

At about 7:30pm I started with what felt like I’d had a blow to the top back & right hand side of my head. Nasty feeling. Within 15 minutes, this was totally mirrored on the back left hand side.

30 minutes after this - now sitting almost unable to move from pain that felt like I’d been hit with a steel pipe over my head. Now, it continued to spread… This spread now ringed my head like a compressing steel band that was being screwed tighter and tighter.

The final stage - well, the stage I’m at now anyways - I’m hoping it can’t get worse… I can’t think properly, I think my dog can type faster than I am now. The pain circumnavigates my skull 360 degrees. It radiates across my forehead and then follows the nerve lines down my face, from my temples right through to my lower jaw, lips, nose and jawline… My cheeks feel as bad as the invisible lump on the back of my head and neck that still feel like I’d been knocked by this also invisible steel bar.

Just so you know, I do get TN bilaterally, but I’m worried and not sure if this is still a TN thing…

I don’t feel good. It feels like I’m being squeezed like a pumpkin ripe for bursting my head open and this is scaring me.

IS THIS TN STILL?? I haven’t had any zaps since after lunch. It’s now after 1 am. My whole head wants to explode. The pain sensation is not changing, just getting more and more painful. thank goodness for spell check. If I typed like this at school my teacher would rap my knuckles adn kick me out of class.

After my last ER trip, last Saturday night - Dr Hatton wrote to my GP saing please arrange OP CT head & c-spine to rule out SOL.

I’m considering the ER again. But my mobile phone is still charging, it was nearly flat. And it needs about 30 minutes to get a half charge. I’m walking into door-jams and walls and my feet are dragging. Also, that it’s after the middle of the night, I’m worried and would have to drive myself to the city hospital - a one hour drive with a window that won’t close on a winters night with a howling wind outside.

When this started - right at the beginning, I took gaba, xanax, oxycontin. No help, after that it all just got worse… Someone have any helpful advice?

I’d appreciate it. I’ll sit here as long as I can. Then I’ll try and get some winter gear on. If I have to go to ER, then I have to go. Is this right? Should I drive myself?

Thank you friends ~ Ko xx

PS: I feel like I’m a wasted drunk with a major hangover trying to write this down. Except I only have had a glass of chocolate flavored milk … My brother teases me for my “addiction” to chocolate milk - it’s called “Quik”. Comes in strawbertty & banana too. But Choc’s my fave…

#2

Dear Ko,

I hope you feel better soon.

Jo X x

#3

Ko Ko… You are in my thoughts and prayers.
Hugs, Judy

#4

Hey Ro & Jo,

I really want to thank both of you for helping me out during our last chat - I’m much better tonight - it’s now 11:10 pm and I’ve been home about 12 hours.

Judy, thank you for your thoughts & prayers. Last night they were needed and I believe they were answered. I am grateful!

The paramedics and hospital staff were great - and thanks to the Gold Coast Hospital for putting what they call a ‘protocol’ in place, that meant this trip in, the Toradol that has provided me the best relief, is now an automatic treatment when they admit me because of the TN. I was taking straight into the ER and given a bed and about 3 blankets, and a nurse was there to admit the Toradol within 5 minutes.

I have never before had an attack like that. It was the worst night of my life so far last night. The lovely paramedic, I think I’ve met him before :), was concerned, he didn’t know how to help me on the road to the hospital – an hours drive for me, but they got me there in less than 45 minutes. I felt I was on the verge of passing out but my body betrayed that desire – and praying desperately that someone would just put me in a coma or something :frowning: I must have said that out loud :slight_smile: the Ambo said he could understand and appreciate that. So, I said to him maybe oxygen would help, but that I can’t use the face mask as it just blows cold air on my cheeks and would make things worse. I asked him instead for the tuby thing that plug in your nose. He held up the thingamy and said this thing? I actually laughed. He is a good man. He had no way of helping me before getting to the ER, as there’s nothing that he had that could dent the agony I suffered. So he just talked with me. He did notice however, that along & under the lower jaw area, there was visibly obvious inflammation where that part of the pain was. So, then we talked about anything else but what was going on and he tried to make me smile, he used to be in the Army and was a paratrooper. I liked him and he said he’d say goodnight before he left the hospital, but I think I had passed out as I did not see him again.
I was kept in through the night in their emergency room and checked on regularly. First up there, my BP kept climbing – but it didn’t reach the danger zone so they weren’t overly concerned. My Heart rate however kept switching between healthy and oh what do they call it? Is it Tachycardic? I don’t remember. So, they kept me on monitors all night and by morning my BP dropped considerably and my heart rate returned to normal resting levels and so they then decided to go through all the Neuro testing, that was done twice and early this morning they sent me in for the CT scan that they’d previously wanted my own GP to arrange. Thankfully the CT was clear.

After they medicated me in the ER after my arrival, I just kept falling asleep; all I had to was close my eyes. Unfortunately, as we know - ER’s aren’t a good place to sleep as someone’s constantly checking on you. But waking myself from sleep each time, I was forgetting where I was and my brain was just so fuzzy. But the attack didn’t repeat while I was there. Thank goodness for small mercies and large mercies. Though I did and still have some balance issues and my body feels as weak as a newborn after that much pain. Through the dozing & waking in my bed there I felt at times like I was hallucinating. This morning I mentioned this to the Doctor who came to tell me the good news about the CT scan. She did not say a word about what I just said about the hallucinating part – and then I worried they might think I’d gone crazy…

They had no further explanation for what happened. They just treat your symptoms, make sure you’re stable and pretty much send you on your way. The ER doctors & a Neurologist discussed me between themselves but didn’t share their thoughts. They just kept confirming I had an appointment soon with my Neuro. I’m more looking forward to getting that first appointment at the pain clinic. I’m so hoping that they’re going to be a large part of my answer. I hope I’m not setting myself up for further disappointment.

One sweet thing when my Mom drove me home today. My Dogs :slight_smile: oh, the singing and carolling voices when they saw me coming towards the door – that I was again, home at last! They’ve shadowed me all day and smothering me with their concern. People who say that Dogs cannot experience emotion – are all idiots. My Dogs love me and I love them in return. I couldn’t live without them.

It’s now a day later. I’m still unable to walk and balance myself properly without walking into door frames and walls in my own house. I’m dropping things… The fatigue is dragging me down and I think I should try and sleep in case the mild – moderate pains I’m getting tonight are warning signs, I’m just hoping they’re more like aftershocks.

Again, I appreciate all your words of help, comfort, reassurance and advice, maybe more than you know! I so wish that we lived closer together to give each other this kind of comfort when we need it the most. I feel very blessed that you were online – just at the time I needed your help the most! My Angels must really love me, to guide me to sit at my computer while I was in the worst pain of my life – and there you were! Touch wood, so far tonight’s pain is manageable and sticking at 5 or less out of the 10. Medication is useless.
I’m Sorry that I write so much. I think I write this much because I need to unburden, and I know that here are the only people that understand me. But at the same time, I’m sorry to lay so much of my concerns on all of you. End of this stage of my Journal.

Thank you for all your understanding.

Love Ko xx

#5

Hi Ko,
I’m so glad you are feeling better. It was a worrying time. Its good news to hear that the hospital have a protocol in place should this happen again. Though of course lets hope such a severe attack will never happen again.
As Ro says, rest up and take things easy the next few days. Something like that will take time to recover from. And don’t ever worry about writing too much. If that works for you write on I say!

Love and hugs,

Jo X x

#6

Ko…so happy to hear that you are home and doing better. you had us all worried girl… Get yourself some rest. hugs, Judy

#7

Hey Ro,

Sorry, I guess I was still zoned out from my “exertions” of the previous couple of days - but I did rest up, as much as possible, and more than I thought. When Mum dropped me home after being discharged from the hospital, I went to sleep about midday. When I woke up it was just before 7pm. So, pretty good nap. It’s just been hard sleeping since then again. Because after that I was getting smaller attacks, I’d try and rest and go to sleep on my “good” side, then I’d wake up with pain on “both” sides, so then no longer having a “good” side to sleep on makes further sleep impossible.

Until last night, I didn’t have a good sleep in the days between, but it’s only Saturday. I am at my Mothers house, slept here last night. Yesterday morning I had another bad attack like the one I had on Wednesday, except this time it was all Left sided.

I was online and having a great chat with Jo yesterday (around 6 am Friday morning for me) when this next attack began, within minutes it had reached grandeur status. I was going to drive myself to the country hospital when the pain breached the “I can drive myself” part, so I followed Jo’s advice and called a neighbor. Luckily my friend who lives next door it turns out she leaves late for work on Fridays, and by the time she was ready to drive me we decided to wait for the GP to open in town and so drove their instead, as his office was minutes away as opposed to the hospital, and I had more chance of getting the Toradol from the GP than that hospital.

By the time I’m waiting in the GP’s office, I’d gotten into that much agony I was literally bawling my eyes out. It was so embarrassing. It was also the last ampoule of my own Toradol stash too.

Unfortunately, within half an hour of my friend Lisa dropping me home - the attack resumed in full. One aspect of the pain had stayed on my upper cheekbone regardless of the injection and this is what I believe, retriggered the rest of my face.

I phoned the hospital, told me to get to hospital ED. I wasn’t able to drive and did not want to have to phone the Ambo “again”, just less than two days after the last time… I phoned my Neuro’s office and they said there wasn’t anything they could do for me now, to call the chronic pain clinic that I haven’t even had my first appointment with yet. So I phoned them, in tears still here and they couldn’t help me as on Friday, the only person on staff there then was the administrator I was speaking with. He informed me after I cried my eyes out over the phone that when they convened on Monday that they would discuss my case. But only after I mentioned I’d already met with their boss Dr Espinet in the hospital some weeks previously. This shocked the administrator as he says they are an outpatient only facility. Anyway, progressively my stories keep getting longer.

So, Friday - stuck for answers Mum decided she’d come and pick me up and take me to Gold Coast hospital herself, or back to her place if my pain subsided before we got here. So, to her place we went. My pains came and went through the afternoon including pain in my neck. Mum fashioned a lovely heat bag for me out of a pair of bed socks, rice and oats :slight_smile: clever lady is Mum and I’ve been wearing a bed sock now for about 12 hours, less microwaving time :slight_smile: Very fashionable!! I might look into making these myself and if they can be made to look like “just a scarf” then they could be worn everywhere.

Anyways, I slept on her lounge suite - it makes you drowsy just sitting on it, it’s far too comfortable for a sofa I say. Mum has to knit while she watches tv from it or she’ll fall asleep herself. My Dogs had their beds here and slept around me through the night, till I awoke around 7 am this morning. I had slept for 9 hours again last night! I’ve always slept well on Mum’s sofa! Today, I am (touch wood) pain free!

Thanks Ro, sorry for the misunderstanding! I promise to try and continue getting all the sleep my body can take. Often my problem is just that - bilateral TN means I have facial triggers on both sides of my face and ON means that I’ve triggers on the back of my head and neck. Sleep is sometimes a struggle. It’s no wonder I’m now an insomniac! But you get that. I’m feeling good right now and wanting to take advantage of that!

Love ~ Ko xx

#8

i need help!, im sitting here in tears with the same thing going on! i literally feel drunk like i can’t walk, hold my head up or even lift my hands. the pain comes and goes and for the most part to me is tolerable ( saying i’ve had much worse!) i don’t know what to do accept icepacs when i can deal with it! and sleep. unfortunetly i have no doctors we just moved here back in april 2 weeks after diagnosis. had a clear MRI with just confirmation of TN. im on 300mg of epitol (carbamzapine) morning and night. i have gone to the ER but all they give me is Tylenol 3 i tell them the only thing that works is pergocet & oxicodone but they wont give it to me because i don’t had a doctor to monitor them. being that they are a controlled substance. so going to ER unless extreme is pointless. i asked them for a referral to a neurologist and they had to search because they didn’t have one! my mouth about drooped! I have no insurance & husband has no job, filed for Tenncare and denied because i wasn’t pregnant. WHAT DO I DO???

#9

Hi Melissa,

I so know how you’re feeling right now and I am so Sorry that you are going through this now also. I live in Australia so our medical system is different to yours making it hard for me to give you appropriate advice right now.

On a basic level, ice packs don’t work for me, I have to use heat packs - and that’s ironic because in zones where the pain gets the worst, even paramedics can see swelling in those areas of my face. I’ve had no more than maybe 3 hours sleep each night for almost a week now and it’s driving me mad. Every time I wake up I’m in pain and reducing the pain to get to sleep takes too much time and then it’s hard to sleep for the pain.

I’m currently taking Oxicodone 5mg and it doesn’t do much to help me out, but if I take 2 of them & with it an Ibuprofen 400mg it helps a little more.

What chance do you have of finding yourself a Doctor to register with, so you’re at least able to say to the ER you’ve got one and so they’ll then give you the meds that work for you? When I’ve been into the ER, they give me an injection of Ketorelac (Toradol), an intra muscular injection they inject into what I have of muscle in my upper arm… That used to give me relief of up to 8 hours, but now I get half that.

Toradol is only a temporary relief, and can only be used for a maximum of 5 consecutive days, as over use can cause severe damage to your kidneys and abdomen as it is basically an anti-inflammatory - but also, just cause it works great for me does not mean it would work for you.

I hope someone else here familiar with the US medical system etc is able to give you better advice Melissa, all I can say - is try and find yourself a GP or a PCP nearby your home - at the least all they need do is monitor you, blood tests and refill prescriptions.

I’m praying that both our pain will diminish and we get the relief we need! Take care of yourself and don’t be afraid to call the ER for further help if things get worse.

Kerry xx

PS: Sorry, I feel useless that I can’t help you enough Melissa as honestly, I’m still sitting in the same boat you are - just with different circumstances. But I’m wishing you well with all my heart!

Ko xx

#10

last night was a bad night. i woke up and could not move my hands and arm when i did or when the fan blew air on then it felt like needles pricking me. my husband wanted to go to the ER but it was only e few hours from taking my morning meds with ibuprofen 800mg so i took them early, then it started to go to my toes (the needle feeling) but then the medicine must have kicked in cuz i fell asleep. didn’t sleep to long but slept. know I’m just very stiff.