Hello,
You don't know how happy I am to have found you.
I was diagnosed with migraines several years ago, but of late I was experiencing this devastatingly horrific pain that I could not fully understand because it was ten times stronger than my worst migraines.
Since last week I now know that I suffer from both chronic daily migraines and cluster headaches.
This is not the double life I was intending to have (migraines by day, cluster headaches by night, or the other way around) ;)
They are both out of control and consequently so is my life.
In the midst of all this, I am trying not to lose my place as a university student, and frankly I do not know how I can do so.
I have my exams coming in less than 4 weeks and with both migraines and cluster headaches crushing me day in and day out I have not studied as I should have.
Even this message is being dictated but not written by me.
I feel like a failure.
All of my tutors think I am a failure.
They think what I have could be cured with will power, one cup of coffee and 2 paracetamol tablets (this is what I am frequently told).
I guess I registered myself here because I am in desperate need of moral support.
I am lucky enough to have family that believes me when I say that the pain is debilitating.
But the rest of the world does not and I no longer know how to deal with it.
Tomorrow exhausted from several attacks I will have to go and see one of my tutors and admit that I am far from being prepared for the exams.
I know perfectly well what he will be thinking of me. I feel very tired and alone.
I hope some of you can show me that I am not as alone as I feel.
Thank you.

Hi Veronica and welcome,
For now pop into your local chemist and get some Imigran
50mg tablets. And, at the first sign of an attack take one
with a really strong cup of coffee this should help until you
get a proper diagnosis from a nuero. Their is a web site
in the UK called Ouchuk maybe give them a call and they will put you on the right path, 01646 651 979.

Good luck, Hoppy.

Hi Veronica, welcome to the site sorry you had to find it.  Ready for some good news?  You are not alone.  There are others all over the world that are dealing with exactly the same issues you are.  Many of them are here on this website.  You do not have to ever fight this battle alone, every time you get a headache we are all right there with you in spirit.  Ready for more good news?  There are treatments for what you have and some are very good and can give you LOADS of pain free time.  I was on the very real brink of suicide when I found this miraculous site and it's sister site clusterbusters.com.  After 1 visit (1 VISIT) I was able to make changes that gave me almost 7 years of pain free time, I'll say that again 7 YEARS OF PAIN FREE TIME!!  You are stronger than you may think and even though our condition is brutaly debilitating many many people have found ways to manage it and have taken back their lives and are living rich fulfilling lives not dictated by headaches.  Other's will be along to give you lots of particulars but know that everything (Degree's, Marriage, Family) is possible and nothing is out of your reach.  Take care and good luck to you, sending loads of pain free wishes your way.  :)   -Jason

Hi Veronica
Have you actually been diagnosed by a neurologist.That should be your first step as there are other conditions which mimic the symptoms of clusters and you need to rule out anything sinister (more sinister than clusters that is).

If you have been diagnosed already then ask your doctor for sumatriptan auto injections. They will abort the most severe cluster in less than 10 minutes. I never leave home without 2 in my bag. I always take 2  because I had an occasion when the device jammed. You can only use 2 per day though, so I save them just for when I go out. They are my new best friend. There are pills and nasal spray too. I have never had the spray, but I can tell you that the pills take too long to get into your system to be of much help. The auto injections are expensive so doctors often avoid prescribing them. Don't be fobbed off. And it's wise to stockpile a few when you don't need them as most chemists don't keep them in stock and will have to order them in.

At home,I have oxygen (again, ask your doctor to arrange it) which will also abort in 10 - 15 minutes if you get on it fast enough. But, THIS IS IMPORTANT, it must be used correctly or it won't work. You need a flow rate of at least 15 litres per minute or more, with a non rebreather mask. When the pain wakes me up I can usually be asleep again in half an hour. And because it's not a drug you can use it as often as you need to.

There are preventative meds which work well too. Verapamil seems to be every ones favourite, but there are many others. Ask your doctor to do a bit of research. Your tutors could do the same.

Last but not least, you are not alone. We are always here to listen, and believe me we know only too well what you go through. I swear this site has saved my sanity.

Hope my suggestions have helped a bit. If you can get it sorted quickly you may still have time to catch up on your studies.

Good luck and let us know how you get on.
Maz.

Welcome to the place where people really understand what it is like to have CH all too well.

It is perfectly possible to be "lucky" enough to get migraines and another headache type like CH (I'm also lucky like that). What you describe sounds very much like the symptoms of CHs, however there are multiple other causes that can give the same symptoms, which is why we always strongly suggest that you work with a headache specialist to get a definitive and accurate diagnosis. We find that GPs and even many neurologists just do not have the skills or experience in this area.

Getting a good preventive to cut down how many CHs you get is important along with a good abortive, just like you no doubt have with migraines. You'll find that there is a significant degree of overlap with some of the medications used.

Have you got preventives for your migraines and abortives too? If not, make sure you get some for this too.

Once you've got your preventive and abortives in place you'll find that you can minimise the impact of CH which will help with university. However 4 weeks is a short time period to get everything in place before the exams, plus the time you'll need to spend preparing.

First off, make sure that your university department is provided with proof of your medical status with a letter from your doctor. Get this in place before the exams take place. Also document all your migraines and "CH"s so you can show their impact.

I wish will power, coffee and some pain killers would be all you need for migraine or CH as per your tutor's wishes, perhaps you could point them at published medical research papers showing the impact of CH?

Also explain to your doctor about the urgency in getting your "CH" addressed. One possible option that can help you in the short term is using a prednisione taper which can often block all CH for a week or so, but don't use it much longer than that or it can result in serious side effects. But the short term preventive action could be enough to get you through some exams.

One thing you do have here is a load of people who really do understand what it is like to get some pretty severe headaches and the impact they can have. So you're no longer alone, but part of an extended family we have here.

Hello, I cannot thank you all enough for your wonderfully supportive messages.
I was almost moved to tears by them.

Yes, I was seen by a headache specialist last week and officially diagnosed with cluster headaches.
I have had them for about 4 years but my neurologists - and yes, there were 3 of them (this is the beginning of a bad joke or how many neurologists do you need to diagnose a cluster headache) - my neurologist always shrugged with indifference whenever I mentioned I had 2 different types of migraine and this was puzzling me.
I am still waiting for the specialist's letter to reach my GP to be able to start a real treatment but I know that the headache specialist advised zolmitriptan nasal spray (I had serious side effects with Imigran) and oxygen if that fails.
Until now, I have been taking an alarmingly high dosage of propranolol as a migraine prophylactic, but, of course, my specialist says we need a prophylactic that works for both migraine and cluster headache.
She initially suggested topiramate, but I was too afraid of the severe cognitive impairment induced by it.
So, she prescribed what se argues is a promising new drug, candesartan.
However when I got home I checked the medical trials done to check its efficacy for cluster headaches and I was not particularly impressed by what I saw.

As any of you heard about candesartan for cluster headaches?

My headache specialist firmly believes that in principal, if not in evidence, botox injections might also help.
Is she mistaken?
The sense I get is that she wants to try cutting edge treatments to see if they work, even if the evidence is still limited or non-existent.

Thank you so much for all your help.
If I am the first here trying candesartan you may all see me as your guinea pig.

Have you tried Verapamil with a Prednisone taper dose.
This is the preferred treatment when dealing with CH's.
Maybe talk with your GP about it.

Hoppy.

It is far from uncommon for it to take several years and several neurologists before getting a definitive and correct diagnosis of CH.

I'd ask your GP about having both oxygen and zolmitriptan. You can use oxygen as often as you like, so great for when at night when you say you get most of your CHs, then using the zolmitriptan for when out and about during the day when it isn't as easy to lug oxygen around. It is also better to have multiple methods of aborting CHs available so that if one fails, runs out, etc. then you can still abort a CH.

Having both migraine and CH will complicate things as far as finding an effective preventive. Propanolol works pretty well for migraines but it isn't a mainstream CH preventive and it obviously has limited preventive functionality for you since you're already taking it at a high dose and still getting CHs, although you don't know how many you might be getting if you didn't take it.

Topiramate (Topomax) has a mixed following here, with some doing well on it and others either finding it didn't work well or the cognitive effects were too significant (it is often called dopeymax).

For candesartan I found very limited data via Google Scholar (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) with a recent trial finding that although it gave better results than a placebo they were not statistically significant.

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Cephalalgia September 2013 vol. 33 no. 12 1026-1034 - Randomised trial on episodic cluster headache with an angiotensin II receptor blocker


Quote:

Results The number of cluster headache attacks (primary efficacy variable) during the three-week treatment period was reduced from 14.3 ± 9.2 attacks in week 1 to 5.6 ± 7.0 attacks in week 3 (−61%) in the candesartan group and from 16.8 ± 14.1 attacks in week 1 to 10.5 ± 11.3 attacks in week 3 (−38%) in the placebo group. The difference between the candesartan and placebo group was not significant with the pre-planned non-parametric ranking test, but a post-hoc exact Poisson test, which takes into account the temporal properties of the data, revealed a significant result (p < 0.0001). Conclusions This was a negative trial. Post-hoc statistics suitable to describe the temporal changes in cluster headache indicate that conduction of future larger studies may be justified.

Searching on the forums here the only mention of candesartan is from people quoting scientific papers, with no reports of people using it.

For migraine prevention there are multiple results, e.g. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE, where trials have indicated a positive result.

Was there any reason given as to why you can't use two different preventives, one that works well for migraine, e.g. propanolol, and one that works well for CH, e.g. verapamil?

I'd also strongly consider using vitamin D3 as a CH preventive. It has positive results for over 80% of people who have tried it here and I've gone over 2 years CH pain free using it. Although it doesn't help with my migraines given a choice of CH and migraines or just migraines I'm more than happy to not have the CHs.

Botox has some positive results in migraine prevention, with at least one person here finding that it helped them, however scientific results from trials with CH show little in the way of positive results:

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Treatment of headache with botulinum toxin A—a review according to evidence-based medicine criteria - Cephalalgia Volume 22, Issue 9, pages 699–710, November 2002


Quote:

The aim of this review is to evaluate the studies available from reference systems and published congress contributions on the prophylactic treatment of idiopathic and cervicogenic headache with botulinum toxin A, and to classify these studies according to evidence-based medicine (EBM) criteria. The studies were analysed with respect to the study design, the number of patients enrolled, the efficacy parameters, and the significance of results. We used the following classification of EBM. I: randomized, controlled study with sufficient number of patients; II: well-designed, controlled study (or randomized, controlled study with insufficient number of patients, no exact diagnosis, missing data of botulinum toxin A dose); III: well-designed, descriptive study; IV: case reports, opinions of experts. For tension-type headache, two studies were found with negative evidence of I with respect to the primary endpoint. There are about as many positive as negative studies with evidence of II or III. For the therapy of migraine, one study with both negative and positive evidence of I, one in part positive study of II, and three positive studies classified as III are available. Two studies on cervicogenic headache with evidence of II and III are contradictory. In addition, we found several positive case reports. For patients with cluster headache, there are positive and negative case reports. We found one positive case report for the treatment of chronic paroxysmal hemicrania. As a result of this analysis, we consider no sufficient positive evidence for a general treatment of idiopathic and cervicogenic headaches with botulinum toxin A to date. Further studies are needed for a definite evaluation of subgroups with benefit from such treatment.

Working out the motives of your headache specialist is not simple as they will have a fully detailed medical history, test results plus training and experience that we simply do not have. They are the experts at the medical side, we're just experts about what we've found works for us.

It is possible that they are trying out new, exciting options, however if I was you, especially with your exams just around the corner, I'd be looking for things that are tried and tested with positive results. Then perhaps later trying out other options.

Hello.
I waited 15 long years to be diagnosed with migraines. Thus, in comparison, 4 years does not seem too long. As far as neurologists and headache specialists go, I have seen the good, the bad and the funny. From the one who got up, took a seat next to the friend accompanying me and just gazed into her eyes to the one who argued he could diagnose any condition by just looking at a person from afar, I have seen it all.
I was very impressed by my current headache specialist. She is highly qualified and profoundly devoted to a lifelong learning process. She listened to me carefully and was respectful of my concerns. She was up-to-date with all research and very enthusiastic about the latest developments.
Neurologists have two sources of knowledge: the medical trials/articles and the anecdotal evidence they collect from other neurologists. In the case of my neurologist, she was relying on the latter for the choice of Candesartan. Yes, the formal evidence is dubious, but, according to her, she was heartened by what some of her colleagues say.
Unfortunately, the protocol demands that three months must elapse between appointments, so I will have to try Candesartan and in three months, if it has not worked, seek an alternative.
My GPs are very supportive and I am fond of them , but they did not know what rizotriptan, for instance, was, so I cannot expect any real treatment options from them. They actually admitted to be struggling with my migraines. If migraines are much more common than CH and still the knowledge of them eludes my GPs, then I do not know how they will cope with CH. Once the letter from my headache specialist reaches them, I will know.  :-/
I have been taking 240mg of Propranolol SR. Albeit the research suggests that it is not effective for migraines beyond that dose, my GP did increase it to 320mg. It was cataclysmic. From fainting spells to shortage of breath, I had it all. I felt a bit like a Victorian debutant after a few too many waltzes.
Thank you so much, Hoppy and Mike NZ for your advices and guidance. In my next appointment (in July, sadly), I will take them with me.

VeronicaUK,

Please do talk with the University. Many years ago, I had a cluster cycle during university, which was poorly diagnosed and even more poorly treated. I was on meds for much if the year which made me loopy and interfered with classes significantly. Long story short...I never finished Uni. I deeply regret today being confused and embarrassed about the condition and not advocating more strongly for myself. There are letters on this site (link?) that you can hand to people that explain CH for what it is, as much more than the headaches that people are used to.

Best wishes for pain free days and nights

Speaking purely from a personal perspective, the trick is to isolate each headache type and treat it on its own - separate from other headache types.

Same goes for individual headaches. Work out which one it is and attack it accordingly.

As if CH isn't bad enough, another headache on top can really spoil your day.

You're never alone at ch.com,

Brian down under.

Hello, PeterB and Aussie Brian, thank you for your replies and support.
Actually, Peter B, I think I am in for a challenge, in regard to my university.
Today I was due to had an early appointment with one of my tutors but had to cancel it due to a very eventful night (more CH attacks than hours of sleep).
As a consequence he is now disdainful of me and unwilling to reschedule the appointment.
Luckily I do have a wonderful family and they have encouraged me not to obsess about the matter.
however, I am still blaming myself for not attending the meeting and feeling quite disappointed with my shortcomings.
Any suggestions about how to be reconciled with myself and my tutor?
Thanks,
V.

Work with your excellent support group:
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They can advise you how, under your health care system, you can move directly to a headache specialty clinic, by-passing local medical resources.