Hi all! 

{Basically I've a few things I was wanting to discuss but I'm about KIP4 right now as I'm typing this, and I can't work out in which order to ask them or whether to use separate threads for each, and to be honest, a lot of this stuff I just want to see written down so that I can unravel it all for myself before trying to relay the relevant bits to my GP, so I'm just going to try to talk about my situation and maybe ask questions as I go or at the end if that's ok? OK...}

About Me

I'm 40 years old now and had my first attack when I was 19, although I didn't know at the time or indeed for many years that it was CH.  I had my CH confirmation about 8 years ago iirc.

At first they were regularly in Autumn each year, but the periods of remission have been gradually getting longer.  My latest remission was 3 years, give or take.

Sumatriptan or A Fistful Of Doses

Since my confirmation, I've been marvelling at the wonders of Sumatriptan injection packs for aborting attacks but I always found it difficult to only take 2 injections in a 24 hour period while getting 3 or 4 attacks in that same space of time.

Towards the end of my last bout, it was a fight I was losing regularly.  I'm ashamed to say I ended up taking 3 or 4 injections per day for probably about the last week of the main peak of that bout.

Thank Crunchy It's Remission Time

To anybody considering doing something similar, I'd recommend NOT to.  By the end of my bout, the veins on the side of my head felt (and sounded) crunchy to the touch.  Yes, crunchy.  I can't say for certain that this was caused by overdosing myself with Sumatriptan, or if it were to do with pressing too hard with my hand-on-face-pressure-points-and-head-veins hand position that I'd decided was the most relieving for me (or a combination of the two), but I found it "a bit scary" and my GP seemed utterly horrified that I'd been taking so much, so I told myself I wouldn't do anything so stupid again.

{owwww, I'm up to about KIP6 or 7 while typing this now}

Scans

After that bout ended, I was eager to try Verapamil as a preventative so I had my heart scans, which showed a block somewhere (can't remember exactly... "left anterior somethingorother block" or something) but it was deemed by a doctor at the hospital that I would be OK going on Verapamil for my CH when the next bout arrived.

{OW dammit gotta take The Beast for a walk}

{OK, cold wet tea-towel draped around my neck like a mini-scarf, a bit of a pace around the cold kitchen tiles and a few mouthfuls of coffee and I'm back to KIP6 ish}

Where was I...?

Verapamil

So, three years pass, in which time the crunchy veins had gradually gone back to normal via a long interim stage of "hmm, they still feel really weird - I hope I haven't permanently damaged myself".

{OK it's passing... down to KIP3/4}

I had been expecting a remission of about 2 years, but after 3 years I'd only ever had sporadic twinges of the trigeminal nerve region that were so short and far between that I passed them off as being "probably a bit of meat stuck between my back teeth or something".  {ooh remind me to talk about my back teeth later if I forget to delete this line}

I was starting to think things like "maybe it's gone for good", "maybe it was never CH in the first place", "maybe it was all in your mind".

Stress and citalopramibility: possibly important info but also maybe not

In 2015 I'd been very stressed out at work, to the extent that on a few occasions I felt like I was sweating acid out of the pores in my face and forehead.

In early Demember 2015, I had a nervous breakdown that has kept me off work ever since with depression, general anxiety and social anxiety.  I was prescribed sertraline at first, which gave me chronic heartburn, and was later moved onto citalopram, which has been much easier to ingest.

{I mention this because I can't say for sure whether the next part is CH-related, citalopram-related, both or neither.}

Heat Of The Night

From not long after moving onto Citalopram (I think that's about the timescale, anyway - my mind is foggy on this detail right now) I started having trouble moderating my body temperature in my sleep.  I'd wake up multiple times per night, every night, either so hot that my whole body and the bed were drenched in sweat, or freezing cold and shivering because I was lying in a sweat-soaked bed that had then cooled right down to refrigeration temperatures.

I don't ever recall having had this problem before; in the past, whenever I was too hot I'd generally just stick a leg out from under the covers in my sleep and not even wake up, but for whatever reason, this year I've seemingly lost this ability.

Alarm clock

On May 5th this year at 4am, I woke up with an alarm clock headache at about KIP7 out of the blue, no warning.  This was followed the same day with KIP4 "twinges" and Kip3 "slight twinges" at 2pm and 9pm respectively.

Then for the next three days, nothing.

The Coming Of Shadows

The shadows then started.  One every three or four days at first, and very minor.

Gradually over the course of the month they got more frequent and more painful, making me more and more convinced it was the start of my new bout, but I was still drinking up to a bottle of red wine (my CH "litmus paper" of choice) every night without triggering a proper attack.

Doctor, Doctor, Can't You See I'm Burning, Burning?

By early June, the attacks ("mild" as they still were, peaking at around KIP6/7) were frequent enough that I visited my GP to get some Verapamil and stock up on Sumatriptan.

I hadn't re-read-up on Verapamil since my previous bout, so I had no idea at that point what dosage to expect, and was blindly assuming the doctor would give me the right amount. 

He had taken my pulse/blood pressure and exclaimed something about them being "spectacular" or "wonderful" or some other such superlative that lifted my spirits somewhat, and checked my previous heart scans (following my concern about the aforementioned somethingorother block they'd found three years prior) before agreeing that I should be OK on verapamil and writing me the prescription.

Week 1 of Verapamil

So, on the 16th June, I started taking Verapamil.

By the 20th of June, I was up to 2 attacks per day, peaking at around KIP7 or 8, and I could no longer drink wine without triggering an attack.  I consider this to be the "proper" start of my pain period.

By the 23rd June, I was up to four attacks per day, still around the same pain levels. 

Info Freako

At this point I started looking for info online about Verapamil, specifically how long it should take for it to start working, and the dosages other people were on for CH.

"Should start working after about a week" the info said.  I had been taking it for a week and my attacks were still getting more frequent, albeit still only making it to KIP 7 or 8.

I then found the results of a CH trial in which the patients had required 200mg-1000mg to prevent their attacks.

I checked the box for my Verapamil dosage.  120mg.  Right.

Double Or Nothing

I hadn't noticed any side-effects at all in the week I'd been taking them, so I took it upon myself to double my dosage to 240mg - marginally higher than the lowest dose in the scientific paper I'd read.  Within 4 days of the "double dose", my attacks seemed slightly easier to handle; within a week they were becoming less frequent and much less painful, peaking at about KIP5 or 6 and occurring only twice per day.

I was ecstatic.  For the first time in my adult life I was having a pain period in which I wasn't going to reach KIP9 or KIP10 at all!  It was like all my Christmases and birthdays rolled into one!

I re-uncorked a bottle of the "litmus" wine that I'd first begun drinking but then recorked on the night my "proper" pain period had started and poured myself a glass to celebrate.  Nope, that still triggers it.  KIP6-7.  Cork back in bottle again.  Injection.  Sleep.

Doctor Doctor, Gimme The Pills, I Got A Bad Case Of Loving Verapamil

Thursday 1st July (last Thursday), I was running out of Verapamil due to having been taking 240mg for about 9 days after the initial week on 120mg, so I arranged a phone appointment with my GP, in which I relayed my scientific approach to redosaging myself with the medication he had prescribed me, explained how the double dose was reducing the attacks, humbly asked if it was OK that I'd done this, and requested a new prescription at 360mg per day.

Astonishingly, the doctor praised my approach, explained that he'd given me the 120mg at first to test for adverse reactions, stated that he "likes patients like me" while cheerfully bemoaning that "it's like Jeremy Kyle in here at times, with patients complaining they can't take certain medications because of the slightest side-effects" and agreed to the 360mg dosage I'd suggested (on condition that I drop into the doctor's office for a quick blood pressure test that I could administer myself).  I wondered whether he remembered my request to change from Sertraline to Citalopram six months ago due to the indigestion or if this were just a humorous coincidence.

Following the call I took a third Verapamil pill, making my intake for the day 360mg as per my new precription, and finishing off the existing box of 120mg pills.

I Want To Ride My Bicycle

I went to bed that night with the best intentions for the following day.  I was going to wake up, have breakfast, cycle to the doctor's, do my blood pressure test, go to the pharmacist across the road where my prescriptions get sent automatically, collect my medication and cycle home.

I woke up the next morning (Friday) with a KIP3-5, which wasn't bad enough to warrant an injection, so I figured I'd cool off, wait it out and then do my tasks when it was gone.

Sure enough, it started disappearing, just as the rain started falling heavily outside.

It didn't feel like the rain would last long, so I decided to wait for it to pass before heading out on my bike, reluctant to spend £10 on taxi fares.

Two hours later, the rain has gone, but I'm back up to a KIP4 and rising rapidly.  Cooling off isn't working; this one's a biggy. 

When it reached KIP7 I gave up and took an injection, collapsed on the sofa and fell asleep, before waking up at 3pm to a new KIP5-6.  I could tell that this one wasn't going to go away either so I took another injection and collapsed on the sofa again.

My girlfriend could never make to the pharmacy in time after she finished work that day so it was decided that she'd drive me there on Saturday morning.

We checked the pharmacy's opening times.  Closed on Saturdays.  I'd missed my chance and would have to go the whole weekend with no Verapamil at all. 

Without A Paddle or For A Few Doses More

With no Verapamil, over the course of the weekend The Beast unleashed his full fury upon me. 

I was determined to not take much Sumatriptan this time around and risk "crunchy vein syndrome" again.

I sat through an unmedicated full-length KIP9 from around 10am-11am on Saturday morning rather than take a third injection within 24 hours. 

It was the first KIP9 my girlfriend had ever witnessed me having.  She was so upset at how much pain I was going though that she was in tears as she supplied me with fresh cold, wet tea-towels to replace the warm ones I was handing back to her every few minutes.

When I was hit with a rapidly increasing KIP6 a few hours later (before I had yet recovered from the KIP9), I had to relent.  I just didn't have the willpower to not abort it.  I broke my rule and took a third injection within 24 hours of each other.

From there the weekend went downhill, with two more attacks on Saturday and six on Sunday leaving a pile of empty Sumatriptan pens that was way too big for such a short time period.

Monday started the same way and it looked like I was going to be screwed for getting to the pharmacy again. 

At around 9:30am I was attempting to email the pharmacy to ask them to deliver my medication but failing to find an address that worked, and emailing my therapist to postpone my appointment I was supposed to have this week until after my pain period was over, while nursing a KIP6-7 attack that I was determined I wasn't going to abort with an injection, when I heard something flop through the letterbox.

Then something else.

Then something else.

Then something else.

Then something else.

"Wtf is going on?"

Then something else.

Then something else.

"This is surely the pharmacy - delivering my stuff without me asking them..."

By the time I got to the door, there was an ankle-high pile of boxes of sumatriptan, verapamil and citalopram. 

I opened the door and it was my girlfriend!!!!  She'd pre-empted my plight and had somehow managed to fit into her schedule "collect and deliver Phil's meds" between "drop off son at school" and "go to work", a schedule slot that is so small it doesn't exist on most days! 

I can't even begin to put into words how I felt at that moment but suffice to say the hug I gave her was the biggest, tightest, most genuinely heartfelt hug I'd ever given her in the whole relationship, and probably to anyone in my whole life other than my parents as a child.

I took 360mg immediately.

About an hour later; attack; injection; another 120mg Verapamil; sleep. 

Two or three hours later, awake; attack; recover; internet; attack; another 240mg Verapamil; injection; sleep.

Awake; attack; recover; eat; internet; attack; injection; sleep.

It was a new personal record for attacks in a day.  Woo! 

I was losing track of what day it was, but figuring I was sleeping so many times per day that my body probably thought it was midweek already and "could probably do with more Verapamil than the 360mg for the first few days to get myself back on track".  My mind wasn't exactly running on all cylinders at this point.

I worked out later that I'd ended up gobbling 1080mg in that first 24 hours.

Bodyquake

Tuesday 10am, girlfriend had taken a day off and was due to arrive at my house, when the big one hit.  The pain levels were increasing so quickly that I knew what was coming...

In anticipation of her imminent arrival, I opened the front door a few inches so that my girlfriend could just walk straight in, and I made my way to the kitchen for the soothing cold tiles, tea-towels, fridge-freezer and ice cubes.

By the time I reached the freezer I was already KIP9.  I opened the fridge and freezer doors and knelt down in the cold air, unable to touch my face or head with my bare hands because they felt like they burned my skin. 

I wrapped up a polythene bag of ice cubes in a wet teatowel and tried to apply it to my head, face and neck, but the ice cubes were too lumpy - my face and head felt like a giant bruise that I couldn't bear to touch even gently.  Still I kept trying every few seconds to see if anything had changed yet, but the pain continued to build.

The air from the freezer was too cold for me to sit too close - the cold air hurting my mouth after a while as I was breathing it in - but I found a "perfect" position at around door-width distance, where I could get the benefit of the cool air on my naked upper-body while still being able to breathe without adding to the pain of the attack.  "This will have to do.  This is where I'm staying for the rest of this one."

As the attack cycled between KIP10 and KIP9 for the next 15-minutes-to-an-eternity, I howled loudly, repeatedly and incomprehensibly through gritted teeth, with the wails only punctuated by the regular rhythm of my full-body convulsions accompanying the pain peaks "Uu-uu-uu-uu-uu-uu-uu-uu-uu-uu-uu-uhhhrrr", "UU-UU-UU-UU-UU-UU-UU-UHHHRRR" with streams of expletives following in the moments of marginal relief allowed by the momentary lulls into the relative remission of KIP9, hurled initially in denial, then furious defiance, then desperation, then through tears of morbid anguish until the inevitable collapse into surrender as my emotional state cycled through the five stages of grief in textbook order.

At that moment, I heard the front door open and someone step inside.

"Helloooo?" was the tentative call of my girlfriend's voice as the door closed again.

A feeble "uu-uu-uu-uu-uu-uu-uuhhrr" was my reply; a barely audible stuttered howl, as loud and comprehensible a call for help as I could manage.

Relief; she heard it; she's heading this way.

For at least five minutes I couldn't do anything to acknowledge her presence in the room as the 10-9 cycle of pain levels continued, until eventually a brief KIP7 dip allowed me time to get my breathing back to normal for long enough to say "hello" in a comically cordial manner that made her utter a short laugh through obvious tears.

I reached out into space with my "spare" right hand in search of hers, which quickly embraced mine and held it firmly yet delicately in a paradoxical act of silent communication and mutual understanding.

The moment was all-too-fleeting, and as the pain cycled back up towards KIP8 she indicated that she had fresh cold tea-towels for me as I forced myself back up from the recovery position and onto my knees.

I nodded my approval, shook my head as she tried to take the one from my left hand, pressed against my face and head, and bent my head forward to allow her to take the one that hung over my neck.

"Wow, this tea-towel is so HOT!" I heard, just before the icy cold wetness of the fresh one arrived on my neck.

I contemplated this for a moment before relinquishing control of the hot tea-towel in my left hand, now featuring a dry patch in the shape of a handprint and to my suprise containing an empty polythene ice bag.

Before I could finish thinking "Where did all the ice go?" my left hand felt the refreshing touch of another fresh tea-towel, just in time to begin soothing my face as the pain escalated back beyond "able to think about something other than the pain" levels once more.

The waves of pain continued to cycle up and down through KIPs 7-10 as I cycled through rocking, swearing,  crying, collapsing, writhing on the cold tiles, and getting back up to my knees again a few more times, before an extended moment of relief allowed me to briefly lay my head on the warm legs beside me.  It was starting to relent.  There would be more peaks but the worst was behind me.

As the next wave tore me back onto the cold floor tiles and I lay there on my side, shaking, convulsing and pressing the cold tea-towel firmly to my head and face, I felt a new unexpected pressure on the outside of the "good" side of my head; something was trying to lift my head from the floor but it wasn't hands.

"What's going on?" I managed.

"I'm trying to give you a cushion" she giggled in reply, her coy mirth in reference to a running joke that she'd be a hopeless nurse because when she tries to help someone hurt, injured or ill, she causes more pain inadvertently by mindlessly prodding the affected area with only noble and caring intentions.

A few waves later and I was able to finally lean into her chest and allow her arms around me, one cradling my head against her warm body as I continued to cry, shake and convulse.

After a short while of blissful embrace in that position, I felt the strangest sensation on the outside of the "bad side" of my head; something warm on my ear inside the tea-towel, moving; moving towards my ear-hole; feels like skin; that's her finger; where's it going?  It's now actually in my ear!


I manage to dribble out the sentence "Do you know your finger is actually in my ear?" before bursting out into a fit of hysterical laughter, in which she quickly joined me as she pulled her hand away in embarrassed realisation that it wasn't my neck she was touching. 

After laughing for longer and harder than I thought possible at such a point in an attack, I thought I heard her say something about it having distracted me, before we both continued our fits of laughter once more.

After a moment, now crying with laughter, I managed to raise my rear end towards her, offering her a new cavity that she might feel inclined to stick a finger in next, in order to distract me further.

More fits of laughter, and the attack finally seeming to be feeling more manageable, I fell into her arms once more, exhausted, shaking from head to toe and grinning from ear to ear.

The rest of Tuesday was a breeze in comparison, although the full-body shakes continued all day.  When they were still there at bedtime, I figured it couldn't hurt to take a 2mg Diazepam that I had left over from just after my breakdown in December, and lay down on the sofa under a blanket in front of the TV.

I awoke this morning thinking I'd had my first full night of uninterrupted sleep in weeks.  I checked the time.  7am.  "I had slept for 9 hours?  No way!  Awesome!"

As I stood up to make myself a coffee and some breakfast, I spotted a cluster of objects on the floor beside my feet.

An expended Sumatriptan injection pen from a freshly-opened box.

---------------


Questions for anyone that made it this far:


#1 What dosage of Verapamil are other people here taking?
#2 Has anybody else here had any unwanted side effects due to taking more than the recommended dose of Sumatriptan?
#3 Do other people get the shakes after a bad attack?
#4 Does anyone else have any experience with being unable to control their body temperature in their sleep, possibly in the months preceding a CH bout?
#5 Did you like my post?

I've been writing this post for about 10 hours.  It's food time and my girlfriend is getting restless as she's been here a while now and I've been doing this.  I'll come back with more questions tomorrow, probably.

Thanks for reading!

Hi all, and thanks for all the kind words.  That was meant to be a short post with a few questions in it, but I ended up getting carried away. 

It means so much to me to be able to talk to people about this stuff, so from the bottom of my heart, thanks for all your replies.

OK.. Vitamin D3 deficiency - very likely indeed - I don't eat much in the way of fruit or veg (unless wine counts), and my mental illnesses keep me in the house a lot with the curtains closed, meaning the sun isn't giving me any Vitamin D either (if that's how it works; I don't really know).   

I know nothing about nutrition at all.  I have to admit that when I look at the info in Batch's post, my head starts to spin at all the UI/Day and 25(OHP)Mu/ml figures and cofactory anomols etc., and I consider myself a science enthusiast! (I always was better at physics than I was at biology or chemistry.  )   

From what I can gather, the general gist is that I need supplements from somewhere (widely available?) and some way of testing my levels of D3 (doctor?)?

I'm going to need to speak to my doctor pretty soon anyway as I'm nearly out of Sumatriptan pens, so I'll have a chat with him about D3 while I have his ear.

I requested O2 a few bouts ago and was told "no, you're a smoker".  When I saw my GP at the beginning of this bout regarding Verapamil, he first asked me if I'd tried O2, and when I mentioned I'd been denied it for being a smoker he confirmed "ah yes, because you'll explode".

The good news from my end is that it looks like the verapamil is starting to work again.  That one attack I had yesterday while writing that post was the only one I had all day, and I've just had about 10 hours of sleep before waking up with only a KIP3 that has begun fading since drinking some water, unwrapping myself from the duvet in which I was cocooned, coming downstairs and making myself a coffee while letting out some body temperature through my feet into the cold kitchen floor tiles.

I'm feeling much more rested and less weak today and my shakes are nowhere near as bad as they were yesterday.

I'm already euphoric at the effect Verapamil has had on my bout, so to hear that I might be able to take vitamin supplements rather than heart medication to defeat The Beast is like, I don't know, being given a surprise birthday cake, then cutting into it to discover the keys to a new car are hidden inside, or something.   

Thanks again for all your help everyone!

Sincere warm regards to all,

Phil

Hi Phil,

You will get all you the Vitamins you need from Iherb.com.

I had prescribed O2 when I was a smoker. Just promise your GP that you won't light up when the gas is on. If he wants a copy of the appropriate script, I'll send one to you.

Again, I say.....D3, D3, D3.

You have nothing to lose but your headache!!!!

Peter.

Mike NZ wrote
As long as you don't smoke when using D3 or just after you should be fine. Similarly don't go near an open flame, e.g. a gas cooker or gas fire.


I think Mike means 02 here, not D3.

Your doctor is talking a load of rubbish regarding the 02.  I'm a smoker and I haven't exploded yet.  As long as you keep the 02 away from any naked flame and don't smoke for 10 minutes afterwards you won't combust.  02 will not cause a fire, but it will feed one that's already alight.

I use 02 upstairs, and smoke downstairs.  If your doctor was right no one would ever have 02 at home (and thousands do) because you wouldn't even be able to light your oven.

Ask him again, and keep on at him till he gives in. It's the first line of treatment.

maz wrote on Jul 8^th, 2016 at 3:29am:


Er, ooops, yes, I meant O2.