Posts posted by HazBaz
Any experience of scuba diving with clusters?
Does it trigger attacks? Is it safe with CH?
Works for me. Lessens frequency, duration and intensity, at relatively low doses compared to some.
I take 80mg IR 3x daily and 240 ER 1x daily when in cluster. So 580 total a day.
Terrible constipation and other 'normal' headaches are side effects. At higher doses my heart doesn't cope too well, so regular ECG monitoring is a must at dose change.
I also still get hit. At least once or twice a day. They are just less unbearable and relatively easy to abort with O2 it seems.
15 hours ago, simplescapes said:
Some of my questions are:
1. Does anyone get aura before CH?
I do not. But my symptoms shift about and change between cluster periods. I developed photophobia during attacks in my last two clusters.
2. Does anyone have excruciating calf pain during CH?
No. But could be stress induced muscle cramps?
3. So far Sept 17- APRIL 18 I was affected by _______???? Haven’t had any headache since but have started feeling fatigue and a little dizzy- does anyone have warning signs to when remission period ends?
Are the headaches waking you up at night? I feel exhausted because my sleep gets horrendously disrupted during clusters. Fatigue and dizziness could be due to losing sleep.
4. Some additional details saw dentist to rule out infection in upper teeth (ruling out teeth is a step in the right direction), had massive attack after drinking beer last summer (alcohol is a headache trigger for many, incl. me.), i rock and moan during attacks (yup... rocking, moaning, clutching head, pacing, banging head on wall), have tried doing crazy strenuous outdoor tasks (exercise can bring on attacks... but can also abort them...) attempting to do something “more painful?” (don' self harm, it doesn't help, and gives you more injuries to worry about), thought about putting my head in a snow bank? Last winter because I can’t seem to push/get the cold packs close enough/cold enough (I rub tiger balm on the temple of the affected side, takes your mind off the searing pain a little). Saw eye dr after attack from pushing cold pack too hard on eye-thought I injured eye ( ). Can’t stand hot baths- hot weather (yeah... climate, weather and seasonal changes can be a trigger), avoid anything I perceive as might be dialting. Even though I haven’t had the pain for over 6 months (be grateful for small mercies. As an episodic sufferer, my heart goes out to chronic sufferers. If it is CH, episodic is the one you 'want') now, I feel anxious not having concrete dx and when will this come back. I have never had headaches in my life! I’ve been prescribed nasal sumatriptan and triptan pills (comes on a like a freight train) at first thought pills were causing pain, then I realized no they weren’t working and it was the headache (nasal and pill form often doesn't work as CH comes on too fast. Injections are the way to go if it is CH. Although, they can cause 'snapbacks', medicine induced CHs.). Tried indomyccin just got bad stomachache. Very distressing thing to first expierence especially in the beginning (Yes. Its horrible. I thought I was going to die for a while, in the beginning. Brain tumour, stroke, whatever...)- I thought I had Lyme dx or stroke and then they found the benign brain tumor (is there such a thing as 'benign brain tumours'?!) which neuro did not even address at appt (that's weird... did they make you a follow up to discuss it?), I brought it up before he walked up and he pretty much acted like I was talking about a zit on someone’s face. I worked in the OR as a surg tech with some of these A holes so it really wasn’t surprising. So I appreciate anyone’s insight and thanks for the vent (the pressure builds up in us all. I'm certain this community helps to save lives and sanity. You've come to the right place to talk about CH.).
On 1/15/2018 at 2:21 PM, Roadie said:
Shadows can mean several things to me. Yes - it's the feeling that an attack is coming on, but often it doesn't. These can last for a few minutes or simply just be sudden bursts of CH pain.
It can also be the feeling that you've been hit with a low level attack - one that isn't bad enough to treat. I get these a lot at the moment. It feels like an attack is starting but then it levels off and never really gets going. The feeling can linger for hours - sometimes even the whole day.
After an attack, I'll get constant "reminders" of the attack, as if my body is suppressing the attack but it's trying to push through again. I call these 'post-attack' shadows.
Lastly, and most bothersome to me, are the bouts of constant pains I get. I've had lots of these bouts. Some days I'll just get repeated nasal blocking on my right side accompanied with sore/burning pain that worsens with each cycle of blockage. I'll get days where I simply have a continuous burning/piercing pain behind my eye. I'll get days where I have the nagging ache in my head that I get with CH attacks but never serious enough to be a real attack. Throughout the whole cycle, I'll be in constant fear that attacks are just about to start but this has actually only ever happened once or twice. These bouts of shadows usually don't result in full-blown CH attacks. I recently spoke to another CH sufferer in the UK who recognised these symptoms in himself.
Amen Roadie. Another U.K. sufferer here who experiences all of the above.
I had 4 teeth removed (including 2 wisdom teeth) because of misdiagnosis of CH as tooth rot. My CH started before that, and I’d had no dental work on that side before that point. Seen more dentists in my life than any other healthcare professional. Got a checkup this afternoon actually!
I take 1000mg of paracetamol and 400mg of ibuprofen to take the edge off shadows... not sure if it works or not. As FunTimes says, a strong cup of coffee does well.
19 hours ago, jon019 said:
Hi Haz...clubhouse is open...we kinda wish you weren't here so soon
Wow... its great in here... love the decor! shame I can't have a drink.
...didja stop the verapamil after the previous cycle ended? what dosage? what form: IR or ER?
Yes. I tapered my dose down from 320mg IR and 240 ER a day, to nothing over about 3 weeks and the cycle had ended. I'm trying to limit long spells on the verap. as I was on it for 6 years solid (without a need), and my ECGs were going a bit wonky. Needed to start getting off it ASAP.
...It's unusual for verap to work by itself quickly (depending on yur definition of quickly) w/o a Prednisone or Medrol taper...but could be. makes me wonder if that cycle was almost over on its own and you got good timing...
Hmmmm... it usually works pretty fast for me... within 5-7 days i'm seeing a reduction in frequency and intensity. Never had steroids or 'medrol'(?) Not even sure what that second one is... usually just been ok with verap.
...do you have a "typical" cycle length?
4-8 weeks - once the cycle is under control maybe 1-2 attacks every few days. It has been 8 a day in the past. But its hard to recall, as I've just had a 2.5 yr gap. This is my 2nd cycle this year. Just had a very stressful 4 weeks doing my masters thesis. Stress isn't usually a trigger... but i'm older and I was very stressed... I usually just try to forget the last cluster cycle for obvious reasons. I used to keep a diary. But that fell off a bit.
...I'd go for the D3...good for ya anyway...
Been looking at the D3 regimin. Looks good, but I need to scrape together £65 to make it worthwhile... I supposed you can't put a price on health and being pain free/reduced...
...how about OXYGEN?...it really is the primary and most accepted initial treatment for CH...
Yes. I have a tank. I under use it, as its been kept downstairs in the cellar... its set up right, but i've never aborted an attack using it. Its often too late by the time I start. Its now right next to the bed, because i've had an awful few days in terms of sleep/night time attacks. So i'll give it another go. Once it works, i'll be hooked and never stop using it!
When I stopped smoking weed (heavily) aged 25 due to anxiety, my CHs started that same year. Took years to be properly diagnosed.
Stopping smoking tobacco 2.5 yrs ago has lessened the frequency/pain of the cycles. Well, until this week...
Everyone is different... with some common shared triggers/experiences. Whatever works is worth working with.
Last cluster was in March/April. Nice little 3 weeker. Brought under control quite fast with verapamil.
Got another one. Started about 5 days ago. Brutal. Awful awful shadows... almost feel like full blown attacks. Almost...
Odd, because i'm usually an Autumn and Spring kind of guy!
Getting me some of that sumatriptan tomorrow. Looks like a new form of injector... although could be the older style. Comes in a smaller box than the Sun Pharma epi-pen ones.
Back on the vit d. Maybe its time I started busting...
Anyway... its 3:40am here. Not sure i'm going to get any sleep with this sheet going on. Ah well. Its the life we lead.
Ta. 'Nice' to be back again so soon.
back on 240mg ER verapamil plus 80mg in the morning. 20000ug vit D.
No naps, alcohol, chocolate, processed meat, refuelling the car, woodwork, painting, going back to sleep after waking. For how long, I don’t know.
any new treatments, salves, chants etc that I should know about?
long time absentee. 2.5 yrs cluster free. Off verapamil for 18 mo. Just changed doctors and was bragging about being CH free for so long...
hit me like a ton of bricks just before the snow hit in the U.K. a few weeks back. Hello Spring Time!
after a remission you forget just how painful your CH is. I would say I’m happy to be back.... maybe I’m just happy to have the support network I’ve relied on several times still be here, and with the same (and lots of new!) faces.
heres to you all! HazBaz.
Yup. Thunderstorms set me off a treat. I am at ONE with the skies!
I had a nap the other day = fine. Today= brutal headache after about an hour.
Took the micky. Paid for it. Although I think my cluster is winding down. Come on summer proper... Hurry UP!
It's Great for hangovers
;D. Yup. And pretty good to keep you going through a heavy sesh as well. Not that id ever do anything like that. :
Oh... And this is just to tide me over until my fruit cakes are ready... As I'm in cluster now, and verapamil is only just keeping the flipping flippers at bay.
No napping, alcohol, chocolate, cheese, filling the car with fuel, processed meats and seemingly, exercise also. Not had that trigger before, but OK!
Yeah. Probs. I want to order a bulk pack, so would like advice on syringe size/needle gauge from anyone who knows about splitting doses, or has insulin dependent diabetes even.
It's a minefield of huge, nasty looking syringes and long, deep, thick needles out there... I would want something comparable in length to the auto-pen, so I don't go too deep and hit an artery or anything. Plus, the shorter and finer the better. Long needles are FREAK-EE. Can't even look when having blood work done... Wuss.
So many good teeth. So much waste. So much money. So little help!
Can anyone recommend an appropriate syringe size/needle gauge for splitting the 6mg auto-pens of imitrex?
The needles must be comparable in size to the AInj. ones, but possibly a little finer to make the whole process less horrible.
I'd love to ask my doctor for dronabinol just to see what he says...
Sativex is what we have in the UK. And it's licensed only for use with MS patients. Pretty sure its tightly controlled and restricted, and unlikely to be available for anything else...
But we'll see. I might ask just for fun. . Or ask my neuro (who specialises in MS) next time I see him.
Summer 2012 I attempted to quit smoking (whatever number attempt that was). It was the summer I was properly diagnosed with CH.
I thought the nicotine patches I was using were the cause of my 6-8 attacks a day. And brutal ones at that.
But, last time I tried to quit using patches in cycle, nothing.
It's all very hit and miss.
Hmmmmm. It's not that bad... Yet. Hopefully it stays that way.
But my heart goes out to your friend CHS... I'm experiencing NOTHING close to that and it's very unpleasant.
Thanks for the sentiment!
New symptons! YAY!
Getting A LOT of trigeminal activity at the moment. Stabbing pains mostly on my cluster side. Makes it worse if and when I touch my face....
The clusters themselves are back under control. Verapamil to thank for that. And not drinking. Typical when the sun is absolutely stunning in the UK this week!
Does any one else suffer from trigeminal neuralgia during clusters? And if so, how do you mediate it/reduce its effects?
You just need a good GP. The GP you have is either not informed/lying about not being able to prescribe O2.
Bottom link in the OUCH FAQs: https://ouchuk.org/faq#n84
Mine didn't even know he could prescribe O2, until I showed him the info from CB/OUCH that said he could.
It was rapid from HOOF sent off to O2 delivery for me. No more than 5 days. I know that's ages when in pain, but once you have it, depending on supplier, you should be able to get refilled tanks within 12/24 hours. Just keep an eye on the gauge and preempt needing to order.
Some GPs are strangely resistant. Probably a cost/risk/benefit thing. But some are very understanding.
Once you have a 'scrip ask to be assessed by an O2 nurse and get the GP to refer you to an oxygen clinic. Then you can ask the nurse for ambulatory cylinders to carry with you in the car/work.
Keep pressing the GP. Go as often as possible and inform them that your quality of life is minimal. Keep asking for O2. Provide as much info. as you can (some docs know very little about cluster headaches). Good luck. You'll get it eventually.
in General Board
Been a long time. I am currently 4 years in to a cluster free period! My longest in 12 years. Last episode was in 2018. Touch the woodiest wood that ever did wood.
Been struggling with my mental health though. And the doc has suggested propranolol for anxiety.
My question is, will the sporadic dosing of 10mg of propranolol only when needed, possibly trigger off my CH?
Any word on this?