It is along story but since 1974 I suffered from regular 'seasonal' and other cluster headaches.  I did everything to try to cure them and alleviate them.  I went to a seminar in London for sufferers, saw a 'specialist' etc etc..  Life was a misery at times.

Some years ago I decided to take 75mg Asprin for the simple reason there was publicity saying it was a good thing to do for one's health.  Two or three years later I stopped due to a spell of adverse publicity as there was no real need for my taking Asprin and it was not prescribed or anything. 

Within 4 months I had a cluster headache session which until then I had decided I must have 'grown out of', not having had one for some time. 

Then I heard of a friend who had gone to her doctor about 'normal' headaches was told she had sticky blood and should take Asprin.  I had never heard of sticky blood and even now haven't looked it up but it dawned on me while thinking about that, that my lack of headaches co-incided with the couple of years or more of taking Asprin. 

I resumed daily Asprin.

So for the last three years or so I have been back on Asprin and had no more cluster headches since that one event when I had stopped Asprin.  No more methysergide! 

So from living in dread on and off for many years I am finally able to feel free of the debilitating killer discomfort.  Life is wonderful and normal.  It may be a fluke but something has changed my life and as far as I can tell, for me, it has been my daily 75mg Asprin.

I probably won't look on here again but I am so pleased that after so many years of intense suffering that something so simple seems to have worked for me and I felt it worth the mention.  If it is a fluke, so be it.

Glad to hear you're living a pain free life, Lord knows it's what everyone here is trying for. I'd love to hear a little more of your symptomology and treatment history. I've seen a lot of weird things suggested here that turned into mainline treatments, Mushrooms, Oxygen, Energy Drinks, Vitamins, I don't dismiss anything out of hand, but would certainly appreciate a little more in the way of details to give us a better idea of how this treatment worked.

Hoping your pain free period lasts a lifetime.

Joe

Hello,

Thank you for the interest in my post regarding Asprin.  I know it can help to learn a bit about how fellow suffers cope etc.  I don’t want to inflict my experiences of cluster headaches on anyone else but stimulated by the generous comment to my original post and that of Guiseppi I will add a synopsis of my saga for those who have the stamina to endure it.

So a bit of history.

I had a cartilage operation in 1974 and the recovery proposed then was to loaf about for six to seven weeks with my leg in a cocoon of cotton wool and bandaging.  I had it done in the summer hoping for a nice few weeks off work and it was under BUPA medical insurance so I had a private room.  I sunk a few cans of lager in the toilet cistern to chill and figured out how I would get to them while supposedly confined to the bed.  In the event I didn’t feel like them at all and when I got home reclining on a chaise longue I would get a pronounced desire to doze off and when I woke began to get this dreadful one sided headache that seemed to be connected with the side of my neck.  I had never had anything like it before.  I put it down to reclining with my chin on my chest.

As time went on I kept getting these batches of headaches over a period of weeks and tried to carry on regardless.  However visits to the doctor and a scan at the hospital gave no enlightenment as to what was wrong.  In fact on one visit to the doctor he told me, ‘It can’t be anything serious or you would be dead by now.’  No one mentioned cluster headaches.  I also found that I often felt extremely drowsy and desperate to doze off which then meant I would wake up and immediately get a bad head.  I remember struggling through a presentation at work about a specific computer program being proposed to me and trying to stay awake and also pretend I was normal when the pain hit and my left eye went reddish and wet etc.  You know how it is.  All you want to do is go away and hide and nurse yourself while writhing on the floor.

In, July 1985, I was driving along and switched on the radio.  I landed on programme called Medicine Today.  A Dr Clifford Rose was speaking and describing my symptoms exactly.  He said they were cluster headaches and spoke of work being done which didn’t really seem to offer much except maybe some palliative medication and it related to his article in the British Medical Journal, Vol 290, p1625

Right, well, I was pretty desperate for some of that so back to the doctor to tell him what was wrong with me.  He looked it up.  He prescribed methysergide or Deseril, which I have to say made an enormous difference except that being averse to medication I tended to try to struggle on rather than take it if I could, and by then it was too late.  I learnt to use it and I must say it worked for me.  Alternative things were recommended like Verapamil and other stuff but I really didn’t go for it and stuck with my Deseril.  I was referred to a specialist neurologist a couple of times, who seemed to have heard of cluster headaches, because there seems to be some protocol about the number of repeat prescriptions one could have before being checked out.  This checking out was only ever a face to face discussion.  ‘If it is working OK then carry on lad,’ sort of thing.

The trip I made to London in 1999 was a seminar for the unfortunates who had cluster headaches and was organized by ‘Migraine Action’, a body to which I subscribed at the time.  I was surprised how many sufferers were there, all grasping at straws I suppose.  Some medical guys, two doctors and a professor were speakers.  One or two afflicted gave an account of the terrible torment they suffered.  I tried to make the connection between the onset of my cluster headaches and my knee operation but it was summarily dismissed as totally inconsequential.  So I actually only learnt that there were others in a greater state of misery than I.  I am not sure what the three medical gentlemen got from it except that there are probably more out there than you think who suffer the death of thousand cuts at regular periods, although apart from that trip I have never met another fellow traveller. The fact is I never told anyone unless I had absolutely no choice outside the family, since I couldn’t hide it at home forever, as I felt it something I had to keep to myself.   Somehow I had to try to hide it.

Deseril was my source of prevention of pain. At the onset I often thought that I really can’t believe this is happening to me again.   I assumed I was set up like this for the rest of my life.  I could go into detail of all the false assumptions or otherwise, of what might cause an event to start and when they occurred etc., but everyone has their own personal painful experience to analyse and dwell on.  It is sufficient to know what cluster headaches mean as the sufferer knows intimately what their versions are like.   

As I mentioned above I kept reading in the papers about the health benefits of Asprin.  I have no health problems but I went to the doctor during the course of one of my six to eight weeks of headaches to get more Deseril prescribed and I had my blood pressure taken.  It was high.  Well I don’t have high blood pressure and refused a suggestion of medication for it, so it was agreed I would go back in a couple of weeks or so.  I went to Boots and bought a blood pressure kit and took a series of three readings several times a day until my next visit.  I provided an Excel spreadsheet analysis with a chart showing high, low, average, Uncle Tom Cobley and All, and he agreed I did not have high blood pressure.  On the infrequent visits I make to the health centre I provide a page of readings for them because they have accepted I suffer from white coat syndrome.  I don’t feel stressed but it does read higher at those visits.  (How many people are on medication they maybe didn't need due to one bad reading at the doctor’s.  Hardly statistically correct to base lifetime medication on one reading).

Anyway just in case, despite not having high blood pressure and seeing all the enthusiasm for people to take Asprin at that time, probably seven years or so ago now, I decided to make sure I didn’t have high blood pressure another time and take it.  (I don’t remember exactly when as I have reached a period in life where time flies exponentially),   Originally I was breaking a standard Asprin in half but then found out about the 75mg pills.

So a couple of years or so down the line there was one of those reversals of advice that happen all the time about anything consumable as articles in the newspaper spoke of the downside of Asprin and not taking it unless you really had it prescribed.  So I stopped, probably around the summertime.

I used to get CHs in ‘Spring’ and ‘Autumn’ usually without fail and the odd ones would fill in now and then.  I made no connection with Asprin at that point despite having gone a couple of years or so without any CH’s. Actually I wondered if I had grown out of them.  I mentioned to my wife they seemed to have stopped.  Fatal to do things like that!  Come November I was hit with a bout.  Deseril save me!

Some time later I was visiting a friend who told me of a mutual friend who is always ailing something who had been getting very bad heads.  She told me the doctor had said she had sticky blood.  I had never heard of this so driving home in the car I was thinking of sticky blood and wondering if there was such a thing.  Then I had my eureka moment.   I only got a headache spell after I stopped using Asprin and had been free of them while I was taking it regularly every morning with my toast and marmalade.

It was too much to hope, at that time, that it was no more than coincidence as I once went for just over a year without one for some unexplained reason earlier in my history.  So I have now been back on Asprin for about three years. So far so good.

I know I am not cured.  I suppose it is like being an alcoholic. You are never cured and will always be one.  As far I can tell it is Asprin that has helped me be normal as there is nothing else in my life that has changed enough to make a difference and there is at least some circumstantial evidence.  In fact whilst I never normally drink alcohol I am not averse to a lager again now if there is little else available and happily consume coffee where I had stopped that, as both these I had decided early on could stimulate the onset of agony.

I am not trying to suggest to anyone that I have found a cure, only that something has changed my life and as far as I can tell it is Asprin. 

There must be many sufferers out there who are prescribed Asprin for other reasons so it is clearly not a universal panacea.  But I am hopeful that I can carry on life like this whatever the reason and not get that dreaded pain. 

So I know how you feel if you suffer Cluster Headaches and I wish you well and hope you find a way to alleviate them forever.  Thank you for being interested enough to read my posts and now I again want to forget I ever suffered from cluster headaches.

Best wishes to all.

Hi Pennine,
No your not cured as their is no cure for CHs, but it seems
you've cottoned on to a preventative measure that works
for you, and I thankyou for sharing it with us. I was a
Spring/Autumn sufferer for 43yrs, but now CH free after
starting the vitamin D3 regime, you can find all the
information about it here, just in case the aspirin stop working for you. I wish you good luck and pain free days.

Cheers, Hoppy. 

I very much regret making the posts above. 

A few days after posting I started again!  OK so you told me so! 

The worst thing for me is that I now discover Deseril/methysergide, which has always worked brilliantly for me, is now withdrawn and unobtainable. 

I have just been prescribed Pizotifen by a local GP since a repeat prescription of Deseril failed, but am not very happy.  So it looks as though I will have to start the quest all over again to try to find something that works.   

Thank you Maz for your kind response.  I really thought I had 'grown out' of CH and had found a solution since I had gone so long with no CHs!   

Anyway I looked up Pizotifen and was unhappy to see what I had been prescribed.  Looking briefly at various comments about it, people seem to suffer significant weight gain. (significant in my eyes anyway).    I have no confidence that this particular GP has a clue about CH but there is someone in the practice who is more appropriate that I will see in due course.

In the meantime I have a enough Deseril to see me through this cycle as I always kept one batch in hand for the next time.  I also have some Verapamil I was once prescribed but never tried.  Since you reminded me of it I will give it a go instead of the Pizotifen.

Thank you again for responding.  Deseril was certainly a wonderful preventative for me with no adverse effects and I could have total confidence in it so it is a bit of a worry it has gone. 

I also saw this on the web.  Maybe it has already been mentioned on here.  I am not allowed to post the link so the rules say - gizmag.com/cluster-headache-ati-neurostimulator/33422/  But you will get it without the 'w's  I hope it becomes generally available if it works as well as suggested but I wonder why the handset needs to be so big.

maz wrote on Aug 29^th, 2014 at 5:30pm:


If you're episodic with well spaced but unpredictable cycles then the standard approach is to wait until you start a cycle, then to start a prednisione taper to act as a short term preventive and at the same time to start on the verapamil, which will become effective about the time the prednisione has tapered off. Then to stay on it until the end of the cycle before starting to taper off the verapamil.

For people who have predictable start dates to their cycles, e.g. every year at the start of March, then they can skip the prednisione and start on the verapamil a few weeks earlier so that it is at an effective level for the start of the cycle.

If someone has short frequent cycles or is chronic then the best option is often to just stay on the verapamil all year round.

With verapamil it typically takes 7-10 days to reach an effective level from starting it or changing doses, so don't change things more rapidly or you'll not be able to tell what is working. Plus it can impact the PR interval on an ECG, so get an ECG done every few months. If it is impacted then stopping the verapamil should sort it out, but you'll then need to jump to a different preventive.

Another option is using vitamin D3 which has worked wonderfully well for me and about 80% of people trying it.

I've been CH pain free for over 900 days using it and yesterday I returned my oxygen cylinders, although I've still got my sumatriptan injections (imitrex) which I use for my migraines so I've still got an abortive.

nolanance wrote on Aug 31^st, 2014 at 12:27pm:



Fortunately, IGNORANCE, even at this stunning level, IS curable...one simply needs to search "Bob Johnson/(verapamil)" as he has tirelessly provided the SCIENTIFIC...as opposed to 'anecdotal" evidence for the efficacy of verapamil in the treatment of CH......

I suspect a ch resident cowboy would have responded much more succinctly.... with 2 words...or is it 1? Same-same it is.

Best

Jon

Agree with Mike, reply 15.

Veap. has a long track record for effectiveness with Cluster and for safety.

Pennine wrote on Sep 6^th, 2014 at 3:29pm:


Most likely with a total dose of 120mg a day you'll not see much benefit, but it is possible that the dose was determined by your GP in view of your personal medical history.

However it is more likely that your GP doesn't have too great an understanding of how to treat CH. You really need to work with a headache specialist to get someone who has the skills and experience to treat CH correctly who can then give instructions to your GP on things like repeat prescriptions.

WOW

Hello again,

Just an update.
After a few years of no CHs I got confident I had grown out of them.  I was daft enough to stick my neck out on here to post on the subject only to have a recurrence shortly afterwards. 

However for some reason this recurrence was very short lived and never really got going. It lasted only two or three weeks and never really developed into the normal sequence of events.  My little stock of methysergide pills - Deseril - ensured a good night’s sleep.  Sad they are no longer available as taking one ensured I would be free with total confidence for at least 8 hours.  But this event was pretty sobering as for the greater part of my life I have endured CHs and had hoped to have put them behind me.

I decided, thanks to the helpful response from Pete Batcheller to give his regimen a bit of a go, although not in its entirety as I could not face taking such a range of pills.  Instead I have opted for the Vitamin D3 and Calcium with my usual cod-liver oil capsule and bit of aspirin.  So far so good.

As I came across my link to this forum while looking for something else in my bookmarks just now, I thought I would mention how things had gone so far.  So now I will forget all about CHs as I don’t want to tempt fate again.

I hope sufferers out there find suitable relief. Best wishes to all and thanks to those who helpfully responded.   The C word may not be in your dictionaries but one can always hope for a miracle. 

Just an update - I have gone another year cluster free.  The only things I take regularly are a 70mg Asprin pill, a 600mg Calcium and Vit D3 tablet and a codliver oil one.  Oh, and a daily couple of bananas but I don't rate them as helping.  I still think the Asprin is my best contributor but who knows?  Fingers crossed now!