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void
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Is it dangerous?
« on: Mar 29th, 2006, 5:31pm » |
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Hi,
I am pretty sure I have clusterheadaches. The symptoms fit like a glove - I laughed when I read them in recognition.
I had the headaches for like a year and a half when I was in my 20s. Then they went away - slowly they kept coming more and more seldom until one day they were gone. Before they resided I was seriously considering suicide, dropping out of school .. whatever. My grade average dropped immensely, and I was close to not getting any grades cause I wasnt in school.
Anyways, I was at the doctors, but they really didnt know what was going on. Migraine, tension headaches... I remember one person actually mentioning clusterheadaches. Anyway, whatever they said it didn't help me at all. I could stuff however much painkillers in my mouth, it didnt matter. I started being afraid of going to sleep. Still, I was untreated. No medicines or anything. Just wait it out.
Anyways, as I said - they went away. Then I think maybe 6 years went by without anything. Then I had the headaches for a week or so. I started panicking, telling my GF about the earlier episode cause I recognised it so well. I had gotten a job, and despite my grades everything was going well career wise. Now I found myself terrified of ending up in the same situation again.
I tried everything, painkillers, massage, excersice, orgasms.. whatever. I did however not go to the doctor. You really need to have a heartattack to get any help from a doctor in sweden, .. if you dont know a good one.
I realised that running helped me "manage" the attacks.. So basically, somewhere around 2300-0200 when the attack came. I strapped on my shoes and started running.
It felt as it decreased the length of the spell at first, but as the days wore on the intensity increased and the help I derived was getting smaller. Still, I kept running, because psychologically I was doing something to help my situation. Then after 2-3 weeks.. I guess it was.. maybe 4 weeks, it went away, much like the last time.
Now, 1.5 week ago the headaches started up again. It might be 3-4 years since the last bout. Now I have a really nice job, but it is very very demanding, and I am not in a position to have any personal problems whatsoever - then Im out. The headaches are increasing in intensity, I am afraid of sleeping. I have slept maybe 3-4 hours tops the nights since it started - I still go to work and so on.
Oddly, I am not very tired when the evenings come. I just wait for the hit.
This time around my gf and me live together - and now she is worried, just as me. She isn't quite as cynical about the healthcare system as I am, so she has pushed me to
try to get some help. So I started researching on the web, found what is in sweden called "Hortons disease" - it fits so perfect I want to break the skull of every doctor Ive ever seen about this problem.
I always get them during the nights.
It starts at the eye, quickly and then expands.
It hurts like hell and goes down in the teeth.
My eye leaks, my nostril stuffed. My eye gets a bit red.
I cant lie down, I pace. It comes 1-2 times a night, very regularly. Then it just disappears, sometimes there is something like a "residual ache"... I didnt see that in any symptoms, but I get it.. it doesnt really hurt, or it does a little, its more like a good reminder that I had a headache.
This "residual ache" can last all through the day, until
the next night with the next episode. I dont know if that disqualifies me from having hortons, but thats the way it is.
Okay, so that is where I am now.
Hello everybody, I am a noob in these matters.
I am 32 years old, btw. GF and house and kids.
I three questions:
a. Is it dangerous? I mean is the attacks, treated or untreated dangerous to your health? Does something get worse, permanently?
b. All these pills you are eating. Are they bad for you? Is it the type of pills that you take to live despite having bad effects? If I get help and its pills, will I be one of those that cant focus, cant remember, cant think, cant get an erection - but hey- it doesnt hurt?
c. In short - is it possible to live a normal life if it doesnt go away? I know I "managed" before, but I was a student and I did not have a lot of "adult pressure" on me. I also had not treatment. And I really didnt enjoy it. It was tough. Sure I am older and tougher now, but this thing aint easy to handle.
best regards everybody.
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| « Last Edit: Mar 29th, 2006, 5:48pm by void » |
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Linda_Howell
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Hearing is one thing. Listening is another.
  
 
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Re: Is it dangerous?
« Reply #1 on: Mar 29th, 2006, 5:56pm » |
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1. No. Painful as hell, but they do no harm even though you would think it should.
2. That depends on what drugs you are taking to prevent or abort and how much.
3. Yes. There are a lot of people here, myself included who are chronic. And chronic for 20, 30 yrs. and still have a life. We measure the content of of our life between hits, not during them.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Kris_in_SJ
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Re: Is it dangerous?
« Reply #2 on: Mar 29th, 2006, 7:45pm » |
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Hi Void,
Welcome to the clusterhead "zoo." Sure sounds like you''ve got what we've got. I myself, go 3-5 years between episodes, but man! What episodes!
You MUST .... repeat, MUST find a doctor who will work with you on this.
Clusters won't kill you, though there are many times many of us wish for death during a particularly hard bout.
Read all you can, print it out and take it to a competent physician. Start with this link. It saved me last time around.
http://www.brightok.net/~mnjday/chtherapy.pdf
The medical information in the link to the left is also extremely helpful. There are very effective treatments out there that will help you find living with this terrible syndrome helpful, if not downright life-saving.
Hugs,
Kris
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Guiseppi
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Re: Is it dangerous?
« Reply #3 on: Mar 29th, 2006, 9:24pm » |
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Take the above advice, print out the info and take it to your doc. Let your gf read the supporters corner. 25 years ago my poor wife was convinced she was gonna lose me to some horrible brain tumor. She's finallly accepted the fact she's stuck with this head aching old fart into old age. Remember that even though she doesn't have the pain, it's a damned scary thing to witness!! Hope you find some relief soon.
Guiseppi
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RichardN
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Re: Is it dangerous?
« Reply #4 on: Mar 30th, 2006, 12:22am » |
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Welcome to Clusterville
Make sure you copy in information included in the above link about oxygen to abort an attack . . . take it to your doc . . . get a script and try it. Works for 60-70% of us. I can kill the beast in minutes if used early-on in the attack.
You have much reading and many questions to ask . . . .fire away. Everyone here understands your pain and there's more CH info here than you'll find anywhere.
Welcome Home,
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Bob_Johnson
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Re: Is it dangerous?
« Reply #5 on: Mar 30th, 2006, 7:23am » |
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The link in another reply will take you to an article written by one of the better headache docs in the U.S. It really represents the "standard of care" at this time.
Overcoming your cynicism about Swedish medicine will be the only way to have access to the best treatments. Untreated cluster will not lead to permanent harm but can trigger the development of anxiety/depression responses which can complicate your busy life.
In the link article, look for comments on melatonin and olanzapine. Both are drugs in pill form. If you can get melatonin without a prescription, you might try that one first. The second is an affective abortive of cluster for some of us, works quickly, and about the most effective abortive in pill form now available. Obvious advantages to use when at work, etc. Consider one of these books:
MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book...."
HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Bob Johnson
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burnt-toast
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Re: Is it dangerous?
« Reply #6 on: Mar 30th, 2006, 10:01am » |
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on Mar 29th, 2006, 5:31pm, void wrote:Hi,
I am pretty sure I have clusterheadaches. The symptoms fit like a glove - I laughed when I read them in recognition.
I three questions:
a. Is it dangerous? I mean is the attacks, treated or untreated dangerous to your health? Does something get worse, permanently?
b. All these pills you are eating. Are they bad for you? Is it the type of pills that you take to live despite having bad effects? If I get help and its pills, will I be one of those that cant focus, cant remember, cant think, cant get an erection - but hey- it doesnt hurt?
c. In short - is it possible to live a normal life if it doesnt go away? I know I "managed" before, but I was a student and I did not have a lot of "adult pressure" on me. I also had not treatment. And I really didnt enjoy it. It was tough. Sure I am older and tougher now, but this thing aint easy to handle.
best regards everybody.
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a. Technically CH itself is not life threatening but left untreated sleep deprivation, and mental/physical fatigue can lead to physiological problems. Horner's Syndrome - is probably the most common issue during on-cycles.
b. Many of the drugs we take are not highly user friendly. But for many, myself included, taking them under a doctors care and using them appropriately is our only means of keeping this nightmare in check. Know what you are taking, track the effectiveness of meds./discontinue any thing that isn't working and stay away from anything that you find too too dangerous. I like to post the follwing links that provide good information for researching prescriptions.
http://www.nlm.nih.gov/medlineplus/druginformation.html
http://www.drugs.com/
c. many of us lead normal lives - it's not easy at times but maintaining a good attitude, finding treatment(s) that help and having good support helps. Believe it or not - in time we learn how to cope and/or work around this disorder.
It appears that you may be suffering from CH however if you haven't already done so - you should see a Neurologist and endure the testing needed to rule out physical causes for your headaches. Maintaining a good headache journal will help you work/communicate effectively with doctors.
Best wishes on your journey,
Tom
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void
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Re: Is it dangerous?
« Reply #7 on: Mar 30th, 2006, 11:22am » |
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Thanks for all your answers! I appreciate it alot. 
I will take most of your advice to heart. However, I will wait another week or two before going to the doctor. If it goes away and stay away for 3-5 years again - then its okay I guess. I mean 2-3 weeks of pain I can manage on pure will.
Last time it was very brief - lasted 2-3 weeks - 3 years ago.
What is scary is if I end up as it was the first time. Then I had them for more than a year and a halft I know I wont be able to cope workwise with that.
It is good to hear that it isnt harmful - despite the psychological effects. The first time around I got a depression, which also was unmedicated for a few years. I dont know if I just got depressed or if it was related to the clusterheadaches.
Then I got Zoloft from a doctor and things were better. I stopped quite quickly with it and I still have depressive tendencies, but I think I keep it in check - or at least manage.
I have started reading more about this now. I see references to elevated serotonine levels during bouts. Have I interpreted it correctly. (Medical english is not my strong point. ) Is there a relation between depression, clusters and serotonine levels? I mean in that the serotonine levels can affect both depressions and ch?
That Zoloft could have a positive effect on CH as well as
the depression?
My girlfriend always says I have no sleeping rythm whatsoever? I always attributed it to me learning to be scared of sleeping during the first bout. Now I wonder if it is the other way around? This disturbance in hypothalamus can govern your sleep ?
This disturbance of the hypothalamus - does it affect other areas of your life/body? Is there so to say other problems that you get as a "freebie"?
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floridian
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Although most doctors consider cluster headaches to be benign, between 60% and 80% of us have sleep apnea, which can be life threatening. Coagulation disorders are also more common, and may be linked with other circulation and heart issues.
Many people live with CH for decades and decades. The headaches themselves don't seem to be a killer, but could be a marker for increased risk of various diseases. Depression, anxiety disorder and OCD also seem to be more common among clusterheads, maybe due to serotonin problems.
So thorough physical exams are even more important for clusterheads, as is adjusting lifestyle factors. Endure the headaches, work towards health.
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| « Last Edit: Mar 31st, 2006, 5:21pm by floridian » |
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chewy
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When I'm in cycle it is very dangerous to anyone trying to hand me a warm towel of tells me to be "one with the pain". It was also dangerous to the windshield of my old Chevy Vega.
Other than that the only danger I know of is from self inflicted injury.
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| « Last Edit: Apr 3rd, 2006, 6:17am by chewy » |
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seasonalboomer
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If I think hard enough maybe it'll go away.....
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Re: Is it dangerous?
« Reply #10 on: Apr 3rd, 2006, 7:35am » |
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I understand your urge to see if they just go away this time in the timeframe you are hoping for. I would suggest you reconsider based on the following rationale. You may, after reading through some of the materials on the website, recognize some easy tools that you can prepare yourself with for:
1.) if the cycle goes away but comes back again one day you will have necessary prescriptions "in-hand" so that you can avoid, or manage the next cluster cycle more effectively from the start.
2.) if the cycle takes a little longer than you are hoping. You might find having some of the tools to help you manage, help you manage through a longer cycle. Getting some Oxygen with a non-rebreather mask 10-15 liters per minute flow rate would allow you to start getting some sleep at night and then manage those other demands of your life better for the rest of your cycle. A doctor can write a prescription (hoprefully this is true in Sweden as well) and yuou could have Oxygen at your home tomorrow. This one tool alone helps many of us make it through a cycle where hits last less than 15 minutes and we can get back to sleep.
As you state in your first post. Managing Cluster Headache is a challenge but the they are manageable and people still live their lives fully. It takes a little work. Don't procastinate yourself into having to endure more pain than you need to.
Scott
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seasonal boomer
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chewy
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Quote:Don't procastinate yourself into having to endure more pain than you need to.
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That statement should be carved in stone, encased in glass and gold, and placed at the front door of the Cluster Headache Hall of Fame.
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