Hi all

January last year I experienced the worst pain I have ever felt in my life, I went to my GP who mentioned cluster headache and first prescribed me with Codene, this had zero effect so I returned to him a few days later and was prescribed 50mg Indometacin 3xday, this sort of helped, when I run out of tablets I didn't go back to the GP and suffered with it, the  pain stopped about 2 month later.

I am also taking Simvastatin 20mg daily for high cholesterol, Lisinopril 20mg and Lercanidipine 10mg daily for hypertension.

Last week the pain has returned, and is incredibly intense, I went to my GP and was again prescribed Indometacin, that was Thursday last week, I don't feel that they have had any effect at all so went back to the GP.

Yesterday I visited my GP again He prescribed 2.5mg Frovatriptan (Migard) twice a day when needed, yesterday evening I took 11 at the start and its seems to have dispersed I do have  a slight headache feeling but not full blown as it has been.

Thing is he has only given me 6 and whilst yes it helped this time I cant keep going back for another prescription every 3 days, especially at £7.35 per time and looking at the info they come in boxes of 6 tablets, thats gonna get very very expensive and irritating having to keep going to the docs and chemists (had to tour 4 chemists before finding one that had this in stock)

This morning I woke with the feeling of a terrible hangover then about 11.30 the stabbing pain returned, I have taken another Migard straight away but it doesn't seem to have helped yet.

I can only assume the "hangover" was down to these new tablets as I certainly haven't had any alcohol to drink, guess I need to be returning back to the GP again, I did ask him yesterday if I could have my own parking space at the surgery as I seem to be always there lately.  :(

First, ask for oxygen at high flow rates. Go to the following link and read it all:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Once you tire of all the traditional treatments, go here:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Your GP won't be able to help you with this brand of treatment.

So many docs lack training & experience in treating complex headache disorders.

Suggest you make contact with your excellent support system to learn how to exercise your right, under your health care system, to get the attention of a specialist.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
====
These are pieces of several messages which give some clues on finding good care.

Message: "Dyno", Tenby, Wales, UK, Aug 9, '09:
[Bob-excludes Wales per Dyno]
looking at their website it looks like a better alternative  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Why not ask to see the top man in the country - Dr. Manjit Matharu at UCL. Under Patient Choice - look at the link below - you have the right to choose who you see.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

and this - copied from the OUCH(UK) website

Quote:

You can ask your GP to refer you to one of our hospitals for treatment
Central to the government’s healthcare policy is that patients should be given the opportunity to be more involved in making decisions about their healthcare. If you and your GP agree that you need to be referred to see a specialist, then you have a choice of at least four local hospitals or clinics. Since May 2006, that choice has been extended. You can now also choose to go to any Foundation Trust in the country, including UCLH. Whether you’re from Cornwall or Camden, as a patient you now have the right to choose UCLH. You can ask your GP to refer you to one of our hospitals for treatment.

[Source: UCL website]
===============================

City of London Migraine Clinic [and other types]  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Seen GP a few times since last post, pain is as bad as ever, had a bad few days, in reply to the oxygen when mentioned it to the GP he told me if I feel I need it then i should visit A&E, doubt thats gonna help as it takes hours to be seen at A&E, he finally gave me a referrel to a neuro consultant which I am so pleased that something has finally happened this appointment isnt until April though, going by last years episodes potentially it will have stopped by then, I left the GPs with nothing for the pain, today a letter came from the neurological consultant saying that as I  have only partiallly responded to triprans then they recommend a course of steroids starting at 60mg per day reducing by 5mg per day to nil to enable me to hopefully gain some relief before being reviewed at clinic in April.

So have been back to docs yet again and have been given Prednisolone 5mg
12 tablets to be taken on day 1
11 on day 2
10 on day 3 ....

I have been given 12 days worth, not quite sure what i am supposed to do after these 12 days are up.

Must say I dont like the look of the side effects of these things :(

Don't worry about side effects. That's a concern when taking for weeks/months; the idea of 10-days and off is to give immediate relief from attacks while, at the same time, starting to use a long term preventive med (which require some time to become effective.)

I hope you have been able to line up with a headache specialist. Far too many docs, even general neurologists, lack training/experience with complex headache disorders to handle us.

Sending along two lists of standard treatments for Cluster. If you don't get treated with some of them, then time to press the doc and show him this material.

See the PDF file below. And print out the entire article of the abstact.
====



Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
=====
And see,


A new (for me) site which is worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

---

The neuro is apparently a headache specialist who has done a lot of research so looking good hopefully.

Its a University teaching hospital too, so I do have hope :)

My wife seems to think I am getting really confused this past wekk, I am not so sure I dont think its so bad, although I am struggling to get my words out, its as if either my brain or my mouth is running too fast, and I just cant get wrds out and start stammering, is this likely to be linked, anyone else experienced this?

ICY wrote on Feb 18^th, 2011 at 3:14pm:

I just cant get wrds out and start stammering, is this likely to be linked, anyone else experienced this?

Yes, this is something my other half has noticed that I sometimes get just before a CH, especially when tired. She normally just tells me to get a Red Bull or points me in the direction of my O2.

Mike NZ wrote on Feb 18^th, 2011 at 8:18pm:

ICY wrote on Feb 18th, 2011 at 3:14pm: I just cant get wrds out and start stammering, is this likely to be linked, anyone else experienced this? Yes, this is something my other half has noticed that I sometimes get just before a CH, especially when tired. She normally just tells me to get a Red Bull or points me in the direction of my O2.

Thank god for that, it was worrying me a little.
Well day 1 of prednisolone took 60mg this morning and had 2 hours of pain but this went after 2 hours, whereas normally the pain just eases to a lower level but is there constant, I do have what i would call a mild regular headache nothing too bad, so its looking like they have produced a positive result, wonder if that will continue as the doses drop by 5mg per day, tomorrow will tell :)

But right now I am feeling quite good about myself :)

For me, prednisone at doses as low as 25-30 mg a day provide 100% relief from attacks. As Bob mentioned, it's traditionally used while you build up on an effective long term prevent, Verapamil, Lithium, Topomax etc.

For a really small percentage, a short blast of steroid will abort a cycle. Crossing my fingers you'll be one of them! ;)

Joe

Well think they partially worked, as said usually I have really bad pain for a couple of hours then a regular moderate headache much of the rest of the day.

Got heavy hit at 10am yesterday, wife went to the pharmacy for the pills and took the Prednisolone at 1030, it stopped at around 12ish, and I only had a mild headache for a few hours, then got another big hit at 3ish lasting about an hour and a half then went to moderate pain again and a heavy hit at around 10pm which lasted an hour.

So in summary yesterday I would say they helped out a bit as the period in between the major hits was improved to when I didn't have these pills, but I don't think they have produced a fantastic result.

I am only on these for a week and the neuro appt is on 7th April, once these taper off dont know if my GP will try anthing else, he wouldnt have given me these had the consultant not wrote and said that he wanted me on a short dose of steroids after receiving the referral, I have to see the GP again in just over a week to get a new sick note for work so will ask him what his plan is to treat me before seeing the neuro.

Hi mate,
It sounds like you need to get on the O2 as well!

Hang in there ICY

Respect

Gary

thanks  :)

things looking good , not hit yet today but feel its coming, its normally hit an hour ago :)

Well last 2 days have been amazing, first break I have had in the pain for a month, guess the Prednisolone really did work, it hasnt been completely pain free still had a few bouts but nowhere near as painful as before I started taking these, got 8 days supply left but they are dropping by 5mg per day so will see what happens towards the end of this course.

ICY,

I hate to say it, but the odds are the beast will return in 7 to 8 days.  You might want to have an oxygen kit at the ready by then and have asked your neurologist to try another preventative.

The beast tends to come back with a vengeance at the end of a pred taper.

Take care,

V/R, Batch

Batch wrote on Feb 23^rd, 2011 at 2:11pm:

The beast tends to come back with a vengeance at the end of a pred taper.

Test a rubber band.
It will help.
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

OMG

what an awful day, started at 5.30am and has hardly stopped since, without doubt the worse day since starting the pred, I am  down to 25mg now and today I feel as bad as I did before the course started.

Been bouts of 3ish hours with constant mild-moderate regular headache in between. The odd thing is that  it is on the right side today it has almost always been on the left up until now.

Got an appt with GP for when the Pred runs out, but he has said already that need to wait until see the neuro or go to A&E, he wasnt keen on writing me up for O2, my wife has said she will get the GP to contact the neuro to sort some pain relief in the meantime, lets home tuesdays appointment bring some good news and my GP has read up on it, he has been a fantastic GP this aside, it seems more a lack of understanding of this "£$^"% condition

Hey ICE,

Get in touch with the folks at the OUCH-UK Helpline on getting your O2 kit.  The number is 0 1646 651 979 and the link to their site is START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; They know how to navigate your NHS to get home oxygen therapy in short order.

Having CH without oxygen therapy as an abortive to stop the pain is like practicing bleeding without a transfusion.

Check your PM inbox.

Take care,

V/R, Batch

Quick update

Well the first neuro appointment FINALLY came around today, she did all sorts of stuff checking my reactions and reflexes, she didnt seems to show any concern so everything there must be fine :)

Sending me for a brain scan just waiting for letter to come through, she has also said she is writing to my GP to tell him to prescribe Verapamil sumatriptan injections.

I have been on Prednisolone for 6 weeks now dosage reducing 5mg per day, I didnt think they were working until i forgot to take them 1 day last week, jeez that day hit me :(
I am currently on 10mg which will prob end when get next lot of meds.

Havent got anywhere with O2 yet, she seemed to be hinting that to get oxygen therapy I should go to the hospital despite saying that O2 is the best thing? that aint gonna work as it takes half hour to get to the hospital, and I very much doubt that the second you walk into A&E they will say oh yes sir, come and have some oxygen now, I have experienced A&E depts here its usualy about an hour wait to see triange then up to 4 hours for treatment, my fatherinlaw had a stroke a few years ago and it was 4 hours before he was seen, so its not very likely that I will be seen plus I am getting them every 5 or so hours, I canty spend the rest of my days sat in A&E waiting for oxygen, I will wait to see how these new meds work, and if they dont then I am gonna start shouting and screaming until I get what I want, and if I need to stamp my feet while doing it then sobeit  :D

Verapamil can be an effective preventative, with dosage in the 240-960mg/day range. Some have found relief at lower levels. It will take a couple of weeks for the blood serum levels to rise so give it some time. The imitrex (sumatriptan)-are they pills or injectables? Most have found the pills are too slow acting and favor the epi-pen like injections. So you are off to a good start, but...get the O2 any way you can. It's by far and away the best abortive around. Blessings. lance

I can pick up the prescription tomorrow, its for 40mg Verapamil 3 times day when I asked about the sumatripan injections apparently it isnt on the prescription, so I need to see the Doc on Wednesday to sort it out :/

A dose of 120mg a day is a very low dose. Most people find the effective dose is around 360-480mg with some going as high as 1000mg.

The dose may work, but don't be surprised if you need to go higher to gain relief. Stepping up the dose should be done slowly as it can take 7-10 days for a dose level to become effective and do this in consultation with your doctors.

Ok thanks, he may be deliberatly starting me on low dose and raising it slowly, i dont honestly know until i see him on wednesday

Althoug I wish i knew why the sumatripan injections arent on the prescription, maybe he wants to talk to me first.

I am really scared about sticking a needle into myself, thats something I have never done, and tbh I dont know if I can do it

Not as bad as it sounds. Check out the instructions from the OUCH site.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Also, if you google Sub-Q injections, you should find some videos.

Don

Please don't take this wrong, but your Doctor obviously knows little about CH. In your own best interest, educate yourself about CH and treatments.

Take Batch's advice and contact OUCH/UK.

Don

the neurologist has written to my GP and it is from this letter that the Dr is prescribing the neuro here obviously doesnt do the prescribing herself which I find a little odd, will go to the GP in the morning and then contact OUCH when I get back, I am so confused at the moment.

ARGHHHHHHHHHHHHHHHHH

Finally got to see a doctor, unfortunately it was not my regular GP, and after today is not someone I will ever see again after they cancelled my appointment on Wednesday, I asked why the sumatripan was not on my prescription, his reply is he doesn't know why I have been advised to use Sumatripan on a regular basis he has given me 2 pre filled syringes of Sumatripan at 5mg and said maybe tablets would be better but not to be used regularly.

He said that Sumatripan shouldn't be used on a regular basis as its not safe for regular use and he cant understand why the neurologist has recommended using this, I told him that there are lots of people using this on a regular basis, he seems to find this unusual, and said there is no way can use this drug more than a few times a month, he was arguing with me saying both me and the neurologist were wrong, why is it so damned difficult to get simple treatments, its not only this but I have also been told by both a GP and a neurologist that O2 is opne of the best treatments but neither will prescribe it, the both tell me to go to the hospital which wouldnt work as it takes half hour to get to the hospital, there is then between a 2-4hour wait for treatment, the other issue is when I have CH I cant drive so how am I supposed to get to the hospital, none of them seem to understand how impractical going to the hospital is to get O2

The other thing he said when I said I have just started on Verapamil, was but that not used for CH thats for High blood pressure.

Rant over, time to go bounce my head off a wall, I don't need this on top of the actual CH's I am finding it hard enough to deal with this, time to ring OUCH NOW :(

Message left with OUCHuk to contact me as it was out of office hours, I have been to get a copy of the letter the neurologist sent the doc and it says


Quote:

Patient has developed CH, would advise that he be commenced on Verapamil, titrating the dose even up to 480mgs daily and sometimes even higher doses are needed. Furthermore, for the acute episodes I would advise Sumatripan subcutenous injections 6mgs, oxygen therapy is also an option

There is an OUCH meeting in Liverpool (not too far from you in Rochdale) on May 15th.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This will be a great way for you to meet up with other people from the area with CH and to find out who the best doctors are to see in your area to get the treatment you need.

It also sounds like the GP you saw is clueless with CH. It's amazing how he could think that they know more than the neurologist!

Unfortunatly I will be in Florida then, we fly out on the 12th May, I am shocked at what he said to me, firstly he didnt understand why I had been prescribed Verapamil as that is for BP I told him if it also used as a recognised treatment for CH, he then said that the Neurologist will only have meant to use the sumatriptan a maximum of a couple of times a month, when I told him this is not what the neurologist said he told me she was wrong  :o

I will make sure I never have to see him again, I am grown man @ 6ft & 17st and afraid of nothing but he had me reduced to tears yesterday, I really am struggling to cope.

I have been trying to find any evidence that it shouldn't be used on a regular basis and have come up with nothing, the neurologist letter says I should use sumatriptan when experiencing "acute attacks" now I experience acute attacks on a daily basis, he treat me as if I was a liar, the problem I have is my own GP is nice but I couldn't see him so had to see this clown, I don't want to go complaining to the PCT about the surgery just yet as I need to keep a fairly decent relationship with my GP especially as I am having to see him every few weeks at the moment I will give my own GP a chance first and see what he says.

I found this today which tells me the exact reason he wouldn't prescribe me the injections on a daily basis START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE the cost to the NHS.
The GP told me that the tablets would be better when I said they take too long to work he said thats not true at all, so yeah it is very clear that he either knows nothing about CH or doesn't believe in it, so thats now O2 and regular sumatriptan that my surgery has said no to, a clear case of denying treatment due to cost, they will have 1 more chance when I go to see my own GP next week, if I still get refused treatment I will be reporting them.

Apologies for the long winded rant  :-/

Hi ICY

Rant away. Going through things like this is what so many people face in order to get the effective treatment they need and deserve.

Instead of having it reduce you to tears, remember that you know you're right, as was the neurologist. All the research for many years has shown verapamil to be an excellent preventive for CHs. Yes, it was originally developed as a blood pressure drug but that doesn't mean that it can't prevent CHs, it just means that that GP is out of touch with current research.

Similarly from imitrex, you don't want to use it too often, but it should be fine for most people 1-2 times a day (especially if using the imitrex tip on the left to use less than 6ml). It can have side effects, like other triptans, so it isn't for everyone (including me) and it can cause rebounds, with some people linking it to longer cycles.

The tablets are not better as they take 20 minutes or so to be absorbed before they start to take effect. Anyone who has experienced a CH, either at first hand or witnessing it will know that 20 minutes is 20 minutes too long.