Cluster headache: Talking with my son on the #rare diseases day

On the #rare diseases day, during the upcoming conversation, Xabi tells us not only what a Cluster headache feels like but also:

1.- How a Cluster headache is diagnosed.

2.-How to live through adolescence suffering Cluster headaches.

3.-Cluster headache treatment.

4.-Oxygen for Cluster headaches, etc

 XABI´s story CLUSTER HEADACHE: Xabi

ELENE:  When Xabi walks down the street, people, no doubt, think ”What does that young kid know about life”. Nevertheless, of pain he´sbecome a master because it´s said that the intensity of the pain of his illness is the highest bearable pain one can feel  just before losing consciousness. It´s also called suicidal pain . Xabier suffers from Cluster headaches.  Since when, Xabi?

XABIER: Since I was 13, more o less. I´m 25 now so I´d say about 12 years.

ELENE: Tell us how your first headaches began to manifest?

XABIER: Well, let´s see; the first headaches were short and very intense. They could have been about ten o 30 second long   and they were very intense but they disappeared almost as soon as they came.

ELENE: You told me that was when you were 13, right? You were in middle school by then. What happened was that the pain began to modify and the spells became longer and longer…

XABIER: That´s it!  As time passed the pain began to intensify  and lasted  longer . They got worse and worse.

ELENE: In fact what they thought was a “Horton” in the beginning, turned out to be a “Sunt”

XABIER: Yes, among other diagnostics, a Sunt.

ELENE;  Well, according to what we´ve been told, every time we´ve consulted a doctor about this, eh…, Cluster headaches and migraines  are hard to diagnose because a lot depends on how long they last and their  intensity. Isn´t it right?

XABIER: And where the pain is exactly.

ELENE: O.K. And where does it hurt you Xabier?

XABIER: My pain  is mainly on the right hemisphere of my head, forehead ,just behind my right eye..It´s a pain characteristic of Cluster headaches, especially when the pain is located right behind the eyes.

ELENE: And does your eye water?

XABIER: Yes, my eyes water, my nose gets runny, I become congested, my eye gets red…Yes, yes, it´s a process….

ELENE: Let´s go back to your student days, because when a 13 year old boy tells his mum, who in this case is me, that his head aches …, well we just think it´s growing pains, from adolescence, or pre- adolescence…So do the doctors !  And as his pain intensifies and modifies, both his school and social life become affected. What happened to you, Xabi?

XABIER:  Well, it´s hard to believe that a 14-15 year old adolescent is absent from school so often…without a serious illness, without a mortal sickness or a very complicated operation. Let´s say that in the beginning, the tutors, professors and all concerned, although they want to believe you , they find it hard because there are specific moments in which you feel very, very bad and suddenly you are alright again .As it doesn´t manifest itself continuously, it is hard to believe .It´s always complicated  to be believed during adolescence when all the professors think you are trying to dodge work, get out of class or anything.

ELENE: Exactly. I have been witness to that for a long time now. How many excuse notes have we taken to the school and nevertheless, we were told he´d have to complete a certain amount of lecture hours by law. How long can a Cluster headache last?

XABIER: Ooww, about two hours. In my case the maximum duration has been three hours.CLUSTER HEADACHE: XABI

ELENE: You started by having seasonal episodes of Cluster headaches. I mean, you had periods in which you experience Cluster headaches and period in which you didn´t. They were mainly in the Fall and Spring.

Right now you are in a chronic state but going back a little to your school years, we are going to stress just how difficult it was to combine the school experience with an ailment such as this.

XABIER: No doubt!

ELENE: Like Xabier said and as I already said at the beginning, it´s hard to believe that a person you see right now full of health, in a matter of minutes can be on the verge of what if you don´t  get an injection or a resort to oxygen?

XABIER: On the verge of… on the verge of…well an in unbearable pain.

ELENE: I only say we are talking about Cluster headaches in a very natural way. Almost colloquial among the two of us…

XABIER: But I think it should be like that! I mean, everyone who has a pathology, no matter how grave it may be or even if it´s something ridiculously minor compared to others, it´s  important that he airs it out, speaking about it in a natural way, that it is very present and nothing to be hidden away. Because I think that until you accept the fact that your life is the way it is, you don´t begin to learn to live.

ELENE: Let´s get to the point of your life 4 or 5 years ago. Xabi began experiencing chronic Cluster headaches. Besides I think it was due to a partial recovery he had after an unorthodox medication treatment he received while in Venezuela. Tell us a little about that, Xabi!  ……because when a person has an ailment of this nature, they will go to any extreme…

XABIER: Well, uh, about Venezuela?

ELENE: Yes, you don´t have to go into detail, but I do want you to tell me about that partial recovery after having given up all hope.

XABIER: No, well I went to Venezuela where I discovered this Doctor who gave me a remedy. He told me that he had a “cure all” treatment, not only for my pathology.  He told me it was made by him …and that it was injected into people with different pathologies or any other problem. The strange thing about the entire matter is that when you ask him about the ingredients in his treatment, he´d tell you only that it´s his secret formula and that well, either you trust him or you don´t.

When you get to this point you …,I have got to say, … you are pretty desperate to agree to try something like this. Obviously you don´t just put yourself into the hands of the first mad man you may run into.

ELENE:  And… Wait a minute!  …because you were desperate, Xabi!

Just so that Xabi could go to Venezuela, we had to fill a suitcase with 40 boxes of intravenous Sumacriptan accompanied by a certified fly clearance giving him permission to fly with it. And at that time he was suffering  daily  Cluster headaches with flare-ups every few hours.

XABIER: Every four hours.

ELENE: So you got there really….

XABIER: Terribly!

ELENE: Desperate.

XABIER: Yes, every four hours; I was in pain all the time. Yes well, I was very desperate, got there, found this contact and said to myself: “ I really don´t have anything to lose!”. The Doctor explained that I would notice the change within three days, not a day more, not a day less and believe it or not that´s just what happened! I remember he injected me several times both in the head and my back and I remember that on the third day afterwards, the headaches began diminishing from every four hours to every seven days! It was an authentic miracle! It was an incredible moment!

ELENE: Do you remember what you wrote on the back of the photo of a beach  you sent us ?  What was it? What did you write?

XABIER: Well, here from Gemini, Cluster headaches. Yes, yes, on a Caribbean island, yes.

ELENE:  And when Xabi returned…

XABIER: … they came back, after a few months.

ELENE: What happens when you have experienced the absence of pain and that pain returns?

XABIER: Yes, I think it´s the worst moment of all. I was probably… I don´t want to say profoundly depressed… but yes, very affected. I had to go on a psychiatric treatment as well as psychiatric medication.

ELENE: Do you agree, Xabi? Because by the time Xabi is prescribed the intravenous  Sumatriptan, we had already been seen by several doctors and the fact is that when he is given the injections they tell him he can get rid of the pains within 5 minutes and that shocks us because  I confess I ´ve  gotten to a point where I have offered a bottle of alcohol to my son sot that he would go into a coma as we didn´t know what to do to stop the pain.

XABIER: Any neurologist would say that was the worst thing you could have done.

ELENE: I know, but what I want to say is that it´s a condition in which the victim on the one hand and the environment on the other hand, both reach a moment of desperation.

So, we´ve already got the Sumatriptan, we are back from Venezuela…Xabi had been offered other possibilities…

XABIER: Surgical Intervention.

ELENE: Exactly! And I think that somehow it was that turn that caused you to make that  decision .

XABIER: Yes, I think so. It was a change. Well, as I said before, there comes a time when either you continue going passively along or you take charge of the situation yourself.

ELENE: Yes, we skipped a part where Xabier even tried Acupuncture.

XABIER: That´s right.

ELENE: And I think that, in some respects it was very good. It´s true that the Cluster headaches didn´t disappear but it did help your state of …emotion…..

XABIER: …….get much better!

ELENE:…Yes.

XABIER: Yes, undoubtedly.

ELENE: Effectively. When you go to face the first operation

which is the bilateral, occipital neuroestimulator.

XABIER: Yes.

ELENE: bilateral, occipital, the external…. We see the need of a psychiatrist. Let´s see, from a mother´s point of view, because we waited so long to get to the point of intervention and later we had to think about the consequences because it doesn´t always work. Then it was clear to me that you would need support, in case things went well and you could rejoin the work force because you had been without working for 4 years  and always subjected to pain.

XABIER: Yes.

ELENE: Or to accept that things, after having made that decision, weren´t going as well as you had thought. What happened, Xabi?

XABIER: Well, nothing gets fixed in a matter of a day and even less if it´s something as serious as my condition is. So, when you, at last,  make such a big decision, and have that stimulator inserted because it´s the only choice  or one of the few choices you are given…, of course you face the fear of “what if it doesn´t work?”  Besides, the surgery part is nothing hard but on the contrary,  the postoperative period is rather uncomfortable, unpleasant….So if you add the negative part of the post operative to the fact that your pains haven´t been reduced or at least they don´t leave instantly, You feel worse than before having the stimulator in you. Then you say to yourself:” I tried and now my back is hurting, headaches are still there, some other things are wrong and you see it in a very negative way… you sink deeper into the pit… There are obviously other solutions to be found  but as the situation doesn´t change in a heartbeat, …you sink into the pit.

ELENE: You need to be very patient, don´t you?

XABIER: In deed. Both myself and my circle.  Because….in the end we all do what we want within the limits of what we can, with our lives. It´s alright to a certain point, to let others decide for you but what is really important is to be around people who understands you, who try not to judge you , who don´t look at you as a regular patient neither as a handicap. People who know about you two facets; there are days when you are 100% and others that they can´t count on you. That affects mostly my family , my girlfriend, my work mates…

ELENE: In fact, I think that Xabi´s circle became aware of what suffering from Cluster headaches was during that operation. Firstly, because  they didn´t talk about it much on the news, secondly because it was a  discretely treated issue at home and I don´t think  this high discretion is good because people don´t understand  how  he can feel perfect at one moment, besides he can be a very funny guy, and he can feel awful five minutes later..That´s what Cluster headaches are like! We already talked about the psychiatrist.  Xabi, have you at anytime been offered either psychological or psychiatric support by the doctors?

XABIER: Well, yes. Not every doctor but my specialist advised me to visit a psychiatrist and that´s what I did, actually.

ELENE: I think it´s fundamentally important that a person who suffers from so much pain….

XABIER: Undoubtedly.

ELENE: … needs help.

XABIER: Undoubtedly.

ELENE: It hasn´t been said yet that Xabier´s day doesn´t finish when he goes to bed . What happens when you go to bed, Xabi?

XABIER: I personally suffer much more from Cluster headaches at night time.  They wake me up so …I even have to get over the fear of going to bed. It reminds me of Freddie Kruger´s movies,…”Nightmare on Elm Street”  where people were afraid to go to sleep because Kruger might come. That was my case precisely. In the beginning, I had to get over the fear of getting into bed because the pain wakes me very often. Besides you wake up with a level of pain you wouldn´t have experienced if you had not gone to sleep, because it can be diminished with the use of both Sumatriptan and Oxygen.

ELENE: Now that you have mentioned the oxygen. Xabier gets the Oxygen thanks to the Association.

XABIER: Well, I had tried  Oxygen before; that´s true.  They had already prescribed it to me a few years ago but because there is so much ignorance regarding that theme… They sent me the Oxygen and I tried it. The problem is it wasn´t prescribed to me as it should have been.

ELENE:  Explain to us the application of Oxygen for Cluster headaches.

XABIER: First, it has got to be a high grade flowing oxygen. It has to be a standard oxygen tank; the condensed cans are no good. It´s  an oxygen tank that emits 12/15 liters per minute and with a closed oxygen mask or with a reservoir, the ones with the bag to breathe pure oxygen. Then , it is crucial that  you take long, steady breaths; inhale very deeply during 10 seconds, then exhale at the same rate. Don´t breathe as you normally would. And yes, this is all thanks to the Association.

ELENE: The Cluster headaches Association helps. Let´s go back to the oxygen use because there are a lot of questions about it. Then you inhale very deeply for 10 seconds…

XABIER: Yes, very hard and as deeply  as I can.

ELENE: And you also expel the air quickly or very slowly?

XABIER: Slowly, slowly…

ELENE: That´s why it takes 15 minutes?

XABIER: Yes, that´s right. I can´t exceed 15 or 20 minutes. They say that breathing pure oxygen for more than 15 minutes at the time is not good for you. Then I usually stop for 5 or10 minutes and if I notice a new flare up, I hook up again.

ELENE: The problem with Sumatriptan is that it causes a rebound effect and they can´t be injecting themselves anytime they want. It is only a resource. With oxygen, the problem is you can use it and abort the Cluster headache but it may be back within 30 minutes.

XABIER: I sometimes delay it.

ELENE: Of Course. This is the other battle of the patients with Cluster headaches whose origin has got to be investigated in order to obtain something specific which would help them achieve quality living.  Nowadays, fortunately Xabi can work but there are people who evidently are trying to claim incapacity to work.

XABIER: AS a matter of fact there has been a case of incapacity but the thing is, I don´t know if it was in Spain or Latin America but I know someone got it. And it is a good first step. Not for me, but I understand it´s good for a lot of others.

ELENE:  We´ve spoken about the ignorance which abounds regarding this illness and yet another battle is for somebody to create a help protocol for Cluster headache patients  because you have experienced going to the emergency room at hospital and they didn´t know how to attend you.

XABIER: Yes, of course, as a habit. For anyone suffering from Cluster headaches, this is the habit. You get to the hospital or clinic in that crucial moment with your eyes watering, half of your face burning and on top of it all, you have to explain exactly what you need, exactly how it should  be  administered and still you are faced with protests. Because many times you get there, you are administered oxygen but not in the proper manner so it is useless.  Then, precisely in that moment, at the apex of your pain, everything is rather unpleasant.

ELENE: Or they want to keep you. They kept you once  in order for you to rest in a darkend room and this has nothing to do with migraines.

XABIER: Absolutely not.

ELENE: Xabi never had any problem with food he did follow a diet.

XABIER: Yes , I did.

ELENE: And actually the only thing that affects you is certain types of alcohol, isn´t that right?

XABIER: Yes, low percentage alcohol beverages, beer, wine, champaign. I can´t drink them. They give me an automatic Cluster headache. I haven´t got any problem with the rest.

ELENE:  Xabi, when you are go into crisis with a Cluster headache, what do you expect from the people around you? It´s important to stress….

XABIER:  OH God! Poor things!  You have to ask my girlfriend; poor child!  Well…. What can I say?  They can´t do much. I understand that it must be hard for those who live it from the outside because they can´t do much. Then they experience the impotence of not being able to do anything to help.

ELENE: Is there any more advice you can give to people like yourself  or their circle?

XABIER: To begin with, I have to thank people in my own circle, like my family, my girlfriend as well as my work mates because without such an circle as mine, I´d not be able to live. My advice is to go right ahead; to trust in your loved ones and those closest to you as I have been lucky enough to have done, and if they are not judgmental  and offer their help, they will progress for sure.

ELENE: And now, to wrap it all up, Xabier, let´s see. They recently  operated on you to change your battery ; they also changed your wiring. The former battery depleted itself in a year and half but now with this rechargeable belt, we can predict that the battery will last…

XABIER: Mmmh! …9 years or so.

ELENE: 8 or 9 years but you continue having Cluster headaches daily.

XABIER: Yes, yes…

ELENE: What´s the next alternative  just in case your situation should become worse.

XABIER: Cut my head off! …No!

ELENE: Before that…

XABIER: No, the next step is the following operation,  a profound stimulation. They perform the same on Parkinson syndrome  patients and it consists in entering and stimulating a part of the brain because what I have now is on the outer fringe. Well listen, you can´t get any worse.

ELENE: I hope we don´t have to go to that extreme; that some investigators or someone will be able to find something which will alleviate the tremendous pain these people suffer.

XABIER: Very well.

 

 

 

 

 

 

 

 

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