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Topic: Greetings from a new guy (Read 236 times) |
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Lopaka
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Greetings from a new guy
« on: Nov 15th, 2006, 8:01am » |
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Hello, my name is Rob from Phx, AZ. So lets begin... I have experienced these weird headaches since was 18. I'm now 23 and still getting them. What I seem to notice is that I get them when I stressed more then normal. It's always the same location, right side over the eyebrow and in extreme cases it feels like someone is sticking a knife in my eye from the inside. They have always last about an hour and as I grew older I could start setting my watch to when they would happen. Around March this year the pain reoccurred everyday and got to the point that I wanted to take a drill to my head. So I finally decided to go to the Doc about it. After being jerked around and a couple weeks of waiting, I finally got to a neurologist who said I was suffering from "cluster migraines."  I guess it's not quite a migraine nor a cluster. From what I understand the reasoning behind his diagnosis was that the fact on extreme cases I do experience nausea. Also I used to be able to lay down, close my eyes, and just concentrate really hard on heavy breathing to the point that the pain was almost non existent. I guess that makes it not a full blown cluster headache. So he had me take topiramate (Topamax) for about a month. By the end of the month my symptoms where down to once a week for 15 minutes. 2 week after I was off the pills the symptoms where gone. Doc said the pill may have worked or I was just at the end of the cycle.
Anyways there was the story now for a couple questions. In the past month, The pain has come back; not to the "bash my head into a wall" point like before, but I'm at the "cry like a baby" point.
I began doing some more research and found this site, but also found this other reference.
http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp? requestURI=/healthatoz/Atoz/ency/cluster_headache.jsp
This reference states, "Some cluster headaches may be an allergic response triggered by food or environmental substances......."
Now last month I just so happen to move from north phoenix to south phoenix (next to all these farms). Could the new location been an additional trigger?
Also in this article, it says as an alternative treatment to try "vitamin C and the bioflavonoids quercetin and bromelain."
Vitamin C I understand.
Bioflavonoids quercetin and bromelain I understand not so much.
This leads to question 2. Has anyone tried this method or a similar method or is this bogus?
Question 2 part b. If this is a plausible way to relief is there adverse effects to blood clotting? (if known) Unfortunately, I'm also a hemophiliac. 
Final question. On the forum here, I have seen a couple references to red bull being used. How well does that work?
Well, that enough typing. Have a good day y'all
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marlinsfan
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Re: Greetings from a new guy
« Reply #1 on: Nov 15th, 2006, 8:33am » |
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Welcome to the nuthouse, Rob....
Many of us believe that CH is caused by a malformation of the hypothalamus, so in my opinion, location makes no difference. I've lived all over the world, in different climates and altitues, and my CH has not changed. But that's just me, we're all different.
I have not heard of a treatment with Vitamin C. Red bull works well for many of us if we drink it early when the headache starts. It's an abortive, as opposed to Dopeymax which is a preventative. Red bull contains Caffeine and Taurine, both of which work well for many. I prefer teh Starbucks double shot espresso & cream in a can. A bit sweet, but works just as well for me.
PF wishes.
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pattik
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Re: Greetings from a new guy
« Reply #2 on: Nov 15th, 2006, 8:43am » |
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Welcome Rob. There are a lot of things that can trigger CH, especially if you are episodic and in a cycle. A typical symptom which occurs simultaneously with the headaches is nasal congestion. That could lead someone to believe that allergies are envolved. But the latest thinking is that the hypothalamus is the culprit. You could also have more than one type of headache going on. Many of the links (to the left) can be helpful, including the cluster quiz. The OUCH site has tons of valuable information on CH. So read as much as you can, and feel free to ask questions here.
patk
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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George_J
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Re: Greetings from a new guy
« Reply #3 on: Nov 15th, 2006, 10:20am » |
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Welcome, Rob.
I doubt that an allergic reaction to something in the environment has much to do with your experience. I've never been able to pinpoint my attacks to any specific allergen. I agree with Patti that the nasal congestion on the affected side may lead one to conclude that allergies have something to do with it, but it's a typical side effect with cluster headache, along with sweating and tearing of the eye on the affected side.
"Cluster migraine" is an older term often used for typical CH, so your doctor may have used this term in your DX, without meaning that you have something other than classic CH. The fact that you experience nausea does not rule out classic CH--I've seen recent studies sited here that say that up to 40 percent of CH patients experience nausea to some degree. I do not, but that's neither here nor there.
I cannot speak to your experience with Topomax, since I have not used it. I'll defer to others in this regard.
Being able to lie down while dealing with a headache is not typical of cluster headache--however, if you're talking about a fairly minor attack, I suppose it is possible. Typically, when under a heavy attack, the reaction is restlessness, pacing, and even headbanging and thrashing around.
As far as the vitamins go, I doubt that they will help much. There is some indication that clusterheads are deficient in magnesium and melatonin. Supplementing these may help to some extent. Melatonin, specifically, if taken 1/2 hour to 2 hours before bedtime may reduce the number of nighttime attacks. That has been the experience of many of us, including me. The usual dose is 6-12 mg. You may need to experiment to find the dosage that works for you. Try it for a while--it may take some time to take effect. Please check with your doctor before doing so, since this may be complicated by your hemophilia. I do not know.
Explore all the links to the left, paying particular attention to the oxygen info--oxygen, properly administered, has been a potent abortive for a great many of us, and has improved the quality of many lives.
It's very interesting that you mention that you are hemopheliac--I've speculated here a couple of times that the fact that I am heterozygous for Factor V Leiden may have something to do with things--Factor V Leiden is (crudely) somewhat the opposite of hemophilia, since the blood clots more quickly than normal. Your experience seems to indicate to me that this speculation may have no merit, and that clotting factors have no relation to CH. Interesting.
Again, welcome--pull up a chair, and join the conversation. There are several other members here from AZ--I'll be surprised if you don't hear from some of them as well.
Best wishes,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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Guiseppi
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Re: Greetings from a new guy
« Reply #4 on: Nov 15th, 2006, 10:28am » |
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And yet another shameless plug for the San Diego meet and Greet in San Diego............check out the Meetings and Gatherings Links down below and take a look at The San Diego Meet and Greet in January. It's a weekend at a hotel where we hang out by the pool and talk. You will learn more about CH in a weekend then most doctors will ever know. PM me if you have any more questions but if you can spare a wekend it's an awesome learning experience. Okay Joe is done with his shameless plug, returning the thread to its rightful owners!!!
Guiseppi
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Bob_Johnson
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Re: Greetings from a new guy
« Reply #5 on: Nov 15th, 2006, 10:53am » |
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Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)
http://www.brightok.net/~mnjday/chtherapy.pdf
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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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swimchica623
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Re: Greetings from a new guy
« Reply #6 on: Nov 15th, 2006, 11:20am » |
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Welcome! See my newbie post, just below yours. I just found this site umm yesterday haha. We have pretty similar stories. I thought I had regular migraines that I was a sissy about...no one talked about crying and screaming and writhing in pain and trying to bash their head in with their migraines. I just went to a new neurologist by my college, the one at home wasn't very good (long story) and he diagnosed me with vascular headaches that are a hybrid of cluster headaches and migraines, maybe that is what your doctor was talking about? He drew a spectrum of vascular headaches with the intensity of the pain, of course there are other symptoms that go along with them too, with tension headaches at one end and clusters at the other, migraines in the middle, and put a dash between the clusters and migraines and said that's what you have. Lucky me, I get symptoms of both clusters and migraines. I explained it a little bit in my own post if you want to read that one. I'm on Topamax too...having good effects with it, not too many side effects I think cuz we are increasing it very slowly, about 25mg every 1-2 weeks. I just started 75mg last night. I'm on Relpax too.
Feel free to ask me any questions, I'm new at this too but we sound pretty similar...lionsound responded to my post she gets the hybrid monster too so she will be very helpful to you too as well I bet. 
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BB
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Re: Greetings from a new guy
« Reply #7 on: Nov 16th, 2006, 5:21pm » |
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Hi Rob,
My husband who has CH has migraine before the CH started, so during cycle, he sometimes would get a migraine attack on top of the CH. However, he said that the pain felt different. The pain of CH is very intense, piercing, drilling and located only on one side of the head and behind the eye ( his left ), he doesnt get the nausea or aura with it and he could never lie down with them. When the pain of CH gets bad he collapses onto the floor or bed but then would roll or writhe or thrash. On the other hand, the pain of a migraine is more widespread, slow building and often throbbing, he often gets the aura ( light flashes ) and severe nausea with them. The intensity of a migraine pain to him is nowhere near the one of CH.
It would help if you keep a detailed diary of all the headaches you get, when, how long does it lasts, the characteristics etc . First it may help you distinguish which is which, secondly it will help your specialist with a more accurate diagnosis.
Take care and painfree wishes to you.
Annette
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