every little helps
I'm struggling to get fit to control the nafld and reduce my hypertension but the beast doesn't help any advice would be appreciated
I would also be very interested in answers on this thread as exercise is a trigger for me, but I've been putting weight on
This is a subject very close to my heart (literally!). I got into serious running about 5 years ago just before my 50th and the last cluster bout I had in 2013 severely impacted on this.
Same is happening now with current bout. The running brings on attacks on a 9/10 probability scale so I've massively reduced the running for obvious reasons.
Also the running performance has dropped off the scale. I used to comfortably race 10km events at 6 min 45 to 7 min mile pace. I can't get anywhere near that now and that's possibly the Verapamil affecting things. This morning after 5kms I was just completly shattered and the headache that followed was the final insult.
When I'm in cycle I am always tired, not just from the impact of nightime attacks but also a general lethargy. I also go through periods when my appetite seems limitless so the bit above about weight gain is relevant for me.
But in conclusion - exercise defintely brings on the attacks for me.
Generally speaking the 'Beast' does not like exercise, particularly anything that raises your body temp and heart rate. You may be better off doing gentle exercise for example, walking, yoga, pilates. I did the London 10k three times for OUCH, but I walked it every time, doing training for three months prior to the event by starting with short walks and building to the full distance. The only time I suffered an attack during the event was shortly after the finish one year when it was very, very hot and i think it was the environmental temperature that set my attack off.
glad to read this thread (apologies to all sufferers) as I felt really abnormal and unco-operative.
I like to walk, to garden and mend my car... BUT after 5 to 20minutes (depending on exertion and weather) I have to "recover" for anything from a couple of hours to a couple of days.
After the "supermarket run" (15min drive, 40min slow shopping, 15min return) I am "out of it" on full meds+ for 2 days or more.
In 30yrs, of this, I am now 19stone with a 4foot waist (yes I mean 48inches).... I'd love to lose it but it goes up a half to a stone on each meds change... the dietician gave me a strict diet and my weight increased, her diet was 1600 calories.. my "blowout" only comes to 1300cals and 800/ 900 normally
if anyone finds an answer......
Just thought I’d ‘butt in’ as this is an interesting discussion and I have thought about this issue many many times over the years.
I have been a chronic for over twenty years and around 11 years ago I got into road cycling fairly seriously. Apart from a short period off Verapamil and on Topiramate a few years ago, I never noticed any relationship between my attacks and exercise. That being said, I have had the odd attack during long bike rides, but I’m fairly sure that was due to dehydration (hot days, not drinking enough etc.). Whilst out on the bike I generally felt/feel safe from attacks. When I was on Topiramate, exercise was a ‘cast iron’ guaranteed trigger. Before I realised that, I once had to pull over at the side of the road with a Kip 9-10, a third of a way through an organised cycle sportive ride with around 600 riders. I felt a right plonker sat rocking at the side of the road with hundreds of riders passing by asking if I was alright! Had to be rescued by the organisers about an hour into the attack, who brought out my portable oxygen tank which was duly emptied on the way back to my car (it had little effect!). I did feel sorry for the poor fellow who recused me. I sure he thought I was going to pass out or die in the van back to the HQ. Luckily, I had my Imigran in the glove box and got rid of it, after around two and a half hours of fun and games!
Anyhow, I subsequently found out that Topiramate causes serious dehydration, and I personally believe this was the cause of my newly developed exercise induced attacks (at the time). As soon as I got back on Verapamil, things went back to normal. Now, I have often wondered if dehydration is the reason for exercise induced attacks with sufferers, and not the exercise itself. I say this because I am a salt lover. I cover my food in salt, and even put it on sandwiches (I know, I know, it’s supposed to be bad for you, but to be fair, it’s just an assumption by the medical community, there’s no actual evidence that it does any harm in reasonable amounts). I’m of the opinion that because I consume quite a high amount of salt, I subsequently retain plenty of water in my body, and therefore never suffer from dehydration when I exercise. Of course, I could be completely wrong, but given that I have only had headaches on the bike when dehydrated (e.g. I’ve had a few attacks after riding up mountains in France in 38C heat and running out of water half way up), maybe there’s something in it.
So my point is this. Perhaps, being fully hydrated may help people who suffer from attacks during exercise. Now I’m not suggesting that anyone starts covering their food in salt! There are other ways to keep hydrated of course. But the hydration issue may be worth thinking about, instead of the exercise itself. After all, a brisk walk can sometimes abort an attack, and let’s not forget the good old water method for aborting!!! It screams ‘dehydration’ to me, but to be fair, our physiology is all different and I may just be lucky with exercise.
With all that being said, I’m pleased to say I consider myself ‘almost’ in remission after 20-odd years of being chronic. After a horrendous deterioration in my clusters a few years ago (after being taken off Verapamil), I decided I had nothing to lose, and made the decision to try one of the ‘alternative’ treatments! Since then, I’ve not touched the oxygen or Imigran for around 16 months and now and just get the odd shadow/reminder once every few weeks. Got my Verapamil down to 60mg a day as well (I dare not come off fully it after last time), which also means that I am able cycle up steep hills much faster, which is nice!
Anyhow, I hope this waffle if of use for someone!
P.S. I wrote this reply over a week ago (on MS Word) but for some reason I was unable to post. Tried again today and no probs. Just wanted to add something to the point about salt and hydration. A friend sent me the link below to an article that was in a paper today about salt. I already knew a lot of the facts in the article, but it’s nice to hear it from an expert! It may be of interest to some.
I have been running long distances for most of my adult life. With the onset of Epsidic Cluster Headaches I found running did trigger them during my cycle. They came on about 15 minutes after I had finished my run. As Val says it was the heat that caused them to come out of thier hideaway
Similarily after the gym I might sometimes go in the sauna but again after about 15 mins the CH started.
Conversley during my Cluster cycle non heat generating exercise can help. I can ski all day without an attack and a brisk walk during an attack will help it go.
I hope you are well.
Interesting comments. As I mentioned in my post, apart from when I was on Topiramate, the only time I generally got hit on the bike was on hotter days and towards the end of a ride or indeed just after. I don't think anything you have observed from your own experiences contrdicts my own observations. After all, heat speeds up dehydration and when we become dehydrated our blood viscosity increases. Perhaps it's the increase in blood viscosity that is the problem? Maybe when you went skiing, the dehyration effects of this exercise were less and you generally consumed more fluids (I certainly drink more when I'm on holiday)??? A sauna will certainly speed up dehydration.
What I can say is that even during my worst times, when I was getting hit 8-12 times a day (and through the night) and on high doses of Verapamil, exercise was never a trigger, unless it was hot and/or I failed to drink properly. There have also been plenty of times when I have exercised in the heat, often for hours, and not had a problem. So my assuption is that for me, dehydration is/was the issue and not the exercise. Perhaps there is a tipping point with dehydration and blood viscosity that triggers an attack?
I'm no doctor or expert of course and I could be completely wrong. I'm just thinking out loud!
I forgot to add that my 'relatively' high salt consuption will keep me more hydrated than the avarage person. Therefore, there is significantly less chance of me becoming dehydrated when I exercise. It could explain why I have been able to get away with exercise for so long.
I do find the salt information interesting. I have allways been low salt, not deliberately so, but I have no taste for it really.
Given that I am Epsidic, when I am out of cycle I am fine with long distance running, I drink a fair bit of water, when I am in a bout then I get the attack with the same fluid intake. So what is different. If dehydration is the factor then I would need to drink significantly more during the run to counter it. It might suggest I am not drinking enough in or out of cycle.
On skiing I am fortunate enough to ski most of the winter and it has become effortless thus no extra hydration required. Although there is less Oxygen at altitude I put the lack of attacks down to increased Oxygen intake due to being outside 7 hours a day and not breathing recycled air. I have the same theory about a brisk walk of 2 to 3 miles.
I have never taken preventatives so I can't comment on the impact of exercise. I have found recently that avoiding Sumatriptan and just using really full lungfulls of Ultra High Flow Oxygen has reduced the length of my bouts significantly. Unfortunately when you travel Sumatriptan is difficult to avoid.
Temperature versus dehydration? I love a wallow in a hot bath to relieve my back problem, unfortunately this triggers an attack when I am in a cluster period.
Is this due to temperature rise or dehydration due to sweating? I do not know.
personally I have to say that neither heat nor dehydration causes my CCH..... but both increase the severity and almost certainly trigger a full migraine ON TOP of the CCH.
I find that the amount of exertion has little impact, whether a little weeding or laying on my back under the car and taking it "sensibly"
I am always very hydrated (1/2 to 1ltr water per hour) and do use salt these days, after many years without.... these are due to medication for my migraine (as opposed to CCh) which cause constant thirst and a problem absorbing sodium.. the latter being partly offset by using effervescent cocodomol instead of pills...... I will point out that cocodomol doesn't help CCH but does take the edge off my main type of migraine (indomethacin also helps a different form of migraine but not CCH)
I'd love to be able to do things in the garden as it's now an unruly jungle full of birds, wood mice and ferral cats (they don't bother either birds or mice but will always pounce on dreamies) and I'd love to go for walks again... I had to stop after walking a mile each way to the chemist and back, I thought it took about a leisurely hour but my distraught wife assures me it was closer to 3 hrs.
I'd like to add something more to this discussion, I am convinced that adrenaline has a role in triggering CH. When I have to do a presentation, or sit an examination, or have an interview, anything that makes the adrenaline run, once that situation is over, and the adrenaline stops running within an hour I get an attack. As the hypothalamus is known to be very active during CH attacks, and the hypothalamus controls not only the autonomic system but also governs the release of hormones from the glands in the body, this may be why the stop/start of adrenaline could trigger an attack. My own theory, but it has been absolute for me since I became chronic.
Adding to Val's post... I used to report that I felt mildly eurphoric before an attack when I first used to get them back in the '90s, which suggests the release serotonin perhaps.
Since 2000, my CH history has been dominated by multiple bouts of shadowing that usually don't lead to full attacks. The bouts are almost guaranteed to begin in the run up to a holiday or other travel plans. I'm quite highly strung and travel is probably my favourite thing. It's fair to say that I can barely control my excitement when my next snowboarding trip or summer holiday is coming. I don't believe it's stress or fear (as I used to). I think it's an overload of serotonin.
My worst CH bouts were between 1992 and 1999, during which time I wasn't interested in exercise and I smoked heavily. I stopped smoking in 1999 and started cycling, swimming and using the gym the following year. I've often wondered whether this change in lifestyle disrupted my bouts.
During the shadowing bouts I mentioned, cycling actually seems to help reduce the background pain. It never triggered anything. However, at the moment, after many years off, I think I'm in a CH bout again. I'm having awful shadows and what do seem to be attacks, but the attacks haven't been worse than a 1 or 2. I cycled 40 miles last saturday and I believe an attack started towards the end of the ride (again, very mild which is why I'm a bit unsure). I also think that my gym session yesterday lunch triggered and afternoon of shadows and a mild attack.
Welcome back Joe, see you found you way here.
I also find that elevated body temperature will set me off. I used to be a size 10 doing regular high impact aerobics, but gave up because after every session I was getting attacks. However, I am going to start doing a mix of pilates and yoga to get some gentle exercise, but not so my body temp elevates. I also did four London 10ks, and an hour or so after finishing, I got an attack. So I learned my lesson. We sort of have to cut our suit according to the cloth we have!
Hi Val, yes I'm here!
I'm going to try a gentle-pace bike ride tomorrow morning. Cycling is a pretty big deal for me. I'm a part-time mechanic with a book of 50+ regular clients for a start so not being able to ride would be upsetting.
Something I noticed as a teenager, which I've noticed this time is that my attacks seem to start when I'm looking down at something. It was reading my tablet on the train last week. This week it's happened making a sandwich and this morning it was working on something on the kitchen table while standing up.
Not being scary, but I'd get that checked out both with an optician and your neuro, just in case. It could be you have a migraine variant AND CH, but as always i can't say I'm not a doctor!
sorry this is a sort of negative post.
I'm going to ask to get referred back to either QS or somebody more local. I'm in Chelmsford now if anybody wants to make any recommendations. I guess when you look at my headache history, it's pretty bonkers.
As I said, triggering attacks by peering downwards at something was one of the first things I reported back when I was 18 and had my first bout, which was enough for my GP to treat me for sinusitus. I remember an attack beginning while I was sifting through records in a shop. I've seen opticians many times since then and nothing sinister has every shown up.
At QS they believed I had migrainous biology. I wouldn't say I get proper migraines (based on what migraine sufferers like my mum tell me) but I have weaker, migraine-type headaches on the l/h side of my head (the non-CH side) that can last all day, every day for most of the week. They tend to come in clusters-of-a-sort too, come to think of it. I'll go many weeks - sometimes months - without them and then they'll come back and linger around for a while. They're not like CH attacks. A headache will normally be there on waking and will waver for most of the day, worsening and easing. It can develop during the day as well. I used to associate them with late nights and hangovers, but I can get them any time these days and they've worsened over the years. I've also believed lack of sleep was a culprit but I've had them after getting plenty of sleep and have also had plenty of days where I've had very little sleep and not had them. Interestingly, I've only had one of these headaches during my latest bout of shadows, and that was very weak. It's as if they can't happen together.
By the way, I also get aura and have done since I was a teenager, but it never leads to a migraine. It can affect both sides (pixellated vision in both eyes) and generally happens 2 or 3 times a year at most. I headache can follow, but it'll be mild.
This current bout of activity remains a bout of shadows. Nonetheless, it is the worst I can remember. The shadows themselves have become almost intolerable at times, but they are not attacks. I've had no night-time attacks but I've had disrupted sleep. I've had 5-6 "phantom attacks" that start like the attacks of old and build up quite quickly but then fade and never really get going. However, the feeling that I'm in an attack lingers for hours (5 yesterday). It'll get worse at times and better at others. It's hard to tell when it truly ends and the shadows take over again.
I'm off on holiday on Monday. A holiday can often break the cycle, and I pray it does, but I'm going to insist on getting referred to a neuro anyway.
I'll PM you.
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