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Topic: I'm new here, and I want your opinion. (Read 440 times) |
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Entra
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I'm new here, and I want your opinion.
« on: Sep 29th, 2006, 1:38pm » |
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Hey everyone. I just came to this site today (out of necessity, really) and have really found this site to be informative and somewhat comforting. This is my first post, and I want to know what you guys think about my situation.
I am now 22 years old. I had my first "event" when I was 12 years old. I woke up with a headache on the left side of my head. It started out bad, but not horrible and I tried to go to back sleep. It built and built on itself, and eventually I found myself screaming. My parents ran into my room to find me rolling around on the floor, pressing my temples as hard as I could. They took me to the ER, but by the time I got there the headache passed and I was ok, just EXTREMELY tired.
Since then, about every year around November/October, I have what we called an "episode" that lasted about a week and a half, where I had severe headaches that lasted about 45 minutes starting anywhere between 6am to 8am, sometimes waking me up, somtimes happening at school/work.
During these episodes, I have immense amounts of pain, like nothing I've ever felt before, however I've not had alot of painful experiences, no broken bones/surgeries or anything of that sort, so nothing to really compare to. I sweat alot, my pupil on the left side (the side of my headaches) dilates, I usually become very pale (but that's probably because when I feel it coming on, I become terrified.) And then the pain begins to climb, resulting in a strong, steady pain sticking at what I would call "level 7" with icepicks taking it to "level 8-10." I'm not a hundred percent sure why, but I always mash my temples as hard as I can while I'm having these episodes, but I do know if I let go, the pain will double in intensity. I scream, I thrash, I roll around, I curse god, I cry. I have a distinct feeling before I have these headaches. In that very spot where the headache lives (in the front of my temple, close to my eye) there is a twinge of pain... then "shadows". Very hard for me to describe, but undeniable in nature.
I have never been diagnosed, however on the few times I went to the ER when I was younger, I heard the phrase "Cluster Headache" stated. My mother is a family practice P. A. She believed 100% that I was experiencing cluster headaches and did her best to help me. Everything from starting out with giving me Ibuprofen (didn't help) to going up to strong narcotics like Opiates (these helped alot if I took them at the first twinge, because I would fall asleep.) However, due to the insurance plan we were on with her hospital, I was unable to get true professional help.
I went to college at 18, and that was a hard 4 years, had 4 cycles... and noone to help. Now I live with my fiance who hasn't seen an episode yet, and doesn't really understand at all what it's like. In fact, she compares it to migraines / sinus headaches, which makes me furious. However, I had a twinge this morning.. but unlike my normal first headaches. It was just a minor headache by comparison, but it was VERY distinguishable in nature. Even now I'm terrified of what tomorrow morning will bring.
I luckily just got on an insurance plan with my work that will allow me to see a doctor about this soon, and I am anxious as hell about it. I want it to come sooner.
I am wondering if what I have experienced half of my life is a Cluster Headache. It seems like it to me, but like I said, I haven't had a professional opinion. I would also like to know if there is anything that I could do that would lessen the headache, take the edge off, that you guys have found out without the use of medicine/oxygen.
Thanks.
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JeffB
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Re: I'm new here, and I want your opinion.
« Reply #1 on: Sep 29th, 2006, 1:56pm » |
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Take the Clusterheadache quiz to the left.
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" It's been my experience that people who have no vices have very little virtues."
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Entra
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Re: I'm new here, and I want your opinion.
« Reply #2 on: Sep 29th, 2006, 2:02pm » |
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I did... yes to 9-16, no to all of 1-8 except I do seek a dark and quiet place... that's due to the fact that I don't want people to see me in my episode... and also I do have sensitivity to light when I'm having one. I get the feeling that that's unusual for a cluster headache, but that's definitely a big symptom for me.
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Bob_Johnson
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Re: I'm new here, and I want your opinion.
« Reply #3 on: Sep 29th, 2006, 3:32pm » |
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Indeed, there is a great deal you can do. Suggest you print this article and share with your mother. She needs some guidance as much as you do.
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
Then I'd get one of these books. The first one would be more to your mother's liking and she could appreciate it but it's not one which a bright layman can not understand.
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.
Then, explore the buttons on the left of this page. All this will get you up and running on learning how to get on top of CH.
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Karla
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Re: I'm new here, and I want your opinion.
« Reply #4 on: Sep 29th, 2006, 5:13pm » |
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It sure has alot of symptoms of ch. Oxygen and verapamil are your best bets. You can try melatonin around 9-12mg of it at bedtime. If the verapamil doesn't work try lithium together with the verapamil (960mg). Lots of time when it doesn't work alone it does miricles when combined with lithium. Also you can try lithium alone 900mg. You may want to do a predisone taper if you have short cycles.
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Karla
suffer chronic ch
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Jonny
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Re: I'm new here, and I want your opinion.
« Reply #5 on: Sep 29th, 2006, 9:50pm » |
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Get diagnosed, we are not doctors.....but what you say sounds like clusters.
I hope not for your sake!!!!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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Callico
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Re: I'm new here, and I want your opinion.
« Reply #6 on: Sep 29th, 2006, 11:24pm » |
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You sound like you are one of us, but as Jonny said we are not Drs. The quiz merely give a good indicator. If it is CH I would stay away from narcotics and opiates in particular. The only reason they have given any relief at all is that they put you to sleep. There are a lot of other things that work for CH to allow a semblence of normality (I am not sure what that is  ). Oxygen works well for a lot of us if used correctly. (see the button on the left) Red Bull works for me IF I can get to it quickly enough at the first sign of an attack. You have to slam it quickly. If you drink it normally it will not work.
Your symptoms have been around enough years that I doubt seriously there is any danger of a tumor or anything of that nature, but you need to have an MRI to be absolutely certain.
Glad you found us. Please feel free to ask questions. You will find someone who can help most of the time.
jc
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"When He acts on the left, I cannot behold Him; He turns on the right I cannot see Him. But He knows the way that I take; when He has tried me I shall come forth as gold." Job23:9,10
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BlueMeanie
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Re: I'm new here, and I want your opinion.
« Reply #7 on: Sep 29th, 2006, 11:35pm » |
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Sorry to say, it sounds like Clusters. There is hardly anything that will stop a Cluster except abortive meds and 02. You should definately consider seeing a Neurologist and get some treatment. All the other stuff you'll find here takes the edge off some, but Triptans and possibly prevents will save you if it's Clusters. Read all the medical info here on the site and print out pertinent stuff to take with you, as some Neuros do not know how to correctly treat Clusters being it is so rare.
Good Luck to You.
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George_J
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Re: I'm new here, and I want your opinion.
« Reply #8 on: Sep 30th, 2006, 12:58am » |
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It does indeed sound like cluster headache, but again, I'm not a doctor. As the others have said, you really need a firm diagnosis.
That said, may I say that CH truly sucks? I understand completely how you feel.
Since your cycles seem to be quite short, I really wonder whether some of the standard medications that take some time to kick in will be of much assistance. Prednisone, perhaps, but normally verapomil takes a week or longer to take effect.
I strongly suggest that when you see your doctor, you print out some of the information available on the left side of your screen, particularly the "oxygen info". It may well be that with oxygen as an abortive and perhaps some other abortives such as maxalt or imitrex injection, you may not need a preventive at all. There's some anecdotal evidence here that verapomil, for one, may lengthen the time that a cycle is in place. I'd hate to see you end up with a cycle any longer than the one you have--you are very fortunate to have one that is normally so short.
Again, I must stress that I am not a doctor. Just my personal opinion, based on what you've mentioned.
By the way, I started at 13 years of age. It seems to be quite common for some of us to start at adolescence. At your age, I was cycling twice a year for six to eight weeks each time. May/June and October/November. Sounds as if you could be a seasonal episodic as well.
Welcome.
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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MJ
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Re: I'm new here, and I want your opinion.
« Reply #9 on: Sep 30th, 2006, 1:22am » |
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Entra read through the pages and you will find many non rx medicinal ways to trim the edges of an attack.
Theres a few natural herbal formulas some use.
Kudzu, melotonin, caffeine, taurine to magnify the effects of these, LSA, caffeine energy drinks for stimulants.
Nani come out wherever you are. Shes the kudzu queen.
Others use repetitive excersize during the onset of a hit.
Many use ice or heat.
Someone have the link to floridians web site?
There are many things to try.
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MJ
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