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Topic: Looking for Advise (Read 355 times) |
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paul
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Looking for Advise
« on: Aug 1st, 2004, 11:58pm » |
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I just happened to stumble across this site late last night after suffering a few weeks of headaches. I am going to see my doctor to validate my self-diagnoses, but jeez, when I read the symptoms and took the quiz, I was floored with how similar these are to my circumstances: male, mid-30’s, almost always brought on by alcohol – even a half of a glass of beer, can’t lay down, teary eye and stuffed up nose on the same side as my headache, gone in 60 mins or so, always at night but ‘shadowed’ during the day, no particular sensitivity to light/noise, no relief from sleep, etc… I have seen two doctors about this and now a neurologist (all in San Francisco – home to some of the best specialists in the world) and so far none have even mentioned a cluster headache. I showed the site to my wife and she was also shocked as how symptomatic I appear and we were both so relieved to see that I may not be alone in this (although also horrified at the thought that this may continue).
I am about 30 days into my second cluster. My first was about 5 years ago (also in the Summer, I believe). It lasted for a few weeks and only seemed to come on when I drank alcohol. I also had an ear infection at the time and so I assumed that the two were connected. In fact, the headaches disappeared completely as soon as I took antibiotics to clear up the ear infection.
Just curiously, has anyone correlated bacterial infections with headaches? I came across some holistic medicine web site that claimed that some 19% of migraine sufferers actually had a bacterial infection of some kind and that the headaches cleared up with antibiotics. I feel fine this time, but the connection between the antibiotics last time and the end of the headaches seems very clear.
Anyhow, does anyone know of a good neurologist or headache specialist in San Francisco?
Also, I have had periods of headaches during the day that were proceeded by a strange and horrifying state of befuddlement and confusion. My vision would get jerky and I would sometime have tunnel-vision and I would have a hard time remembering the names of my friends or family and could barely dial the telephone. This state of mind would go on for about 30 minutes or so and then I would have a bad headache, that felt similar to the cluster headache, but would happen during the day and without alcohol. When I told my doctor about this, he said it was a classic migraine ‘aura’ but in researching ‘aura’, there is almost no mention of confusion or befuddlement. In fact, my current neurologist said that that was asymptomatic and ordered an MRI, which I had done on Friday (I’ll see my Doctor on this next Friday to discuss).
Anyhow, I know how you all feel and it is nice to see that I am not alone. Sorry about the long letter but this is the first time I felt like I was talking to someone that had the slightest clue what I was going through.
Thank you for the excellent resource!
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Superpain
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Re: Looking for Advise
« Reply #1 on: Aug 2nd, 2004, 3:58am » |
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Look up migraine associated vertigo...
My wife has it, and it fucks her up. Although she usually doesn't experience the migraine with it, it incapacitates her for 20 minutes or more sometimes.
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Chris
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Re: Looking for Advise
« Reply #2 on: Aug 2nd, 2004, 4:08am » |
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on Aug 1st, 2004, 11:58pm, paul wrote:I am going to see my doctor to validate my self-diagnoses
GET A CORRECT DIAGNOSIS. HAVE THE TESTS DONE (MRI's and other stuff). A successful treatment plan depends on a correct diagnosis.
Just curiously, has anyone correlated bacterial infections with headaches?
NO. Not cluster headaches.
some 19% of migraine sufferers actually had a bacterial infection of some kind and that the headaches cleared up with antibiotics.
This is a site about clusterheadaches & not migraines. Antibiotics will do nothing for clusterheadaches. 
Anyhow, does anyone know of a good neurologist or headache specialist in San Francisco?
See OUCH for recommended doctors in the US & elsewhere
--> http://www.clusterheadaches.org/doctors.htm <--
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floridian
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Quote:| Just curiously, has anyone correlated bacterial infections with headaches? |
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Head injuries and sinus infections are more common in cluster heads than in the general population. I believe it could be an aggravating factor - it helps flip some of the switches that ultimately produce clusters. No guarantee that treating a sinus infection will help with clusters - once they start, they can re-occur regardless of your nasal integrity. But if you do have a sinus problem, why not take care of it? There are other factors involved - genetic, biochemical, circadian. But histamine is one of the over-produced chemicals in cluster headaches. Could be that a sinus condition up-regulates the histamine production or makes the cells more likely to dump their histamine bombs.
It takes an average of 3 doctors and 6-8 years to get diagnosed. Your experience is consitent with those numbers. This group and OUCH are working to help educate doctors and the general public about clusters. The sooner a proper diagnosis occurs, the sooner that appropriated treatment can be started.
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| « Last Edit: Aug 2nd, 2004, 4:30pm by floridian » |
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Diane_W.
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Re: Looking for Advise
« Reply #4 on: Aug 3rd, 2004, 12:10pm » |
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Hi
In the 28 yrs I've had CH, I have tried antibiotics and sometimes they have stopped a cycle, I think its because at the same time I had a sinus infection. For many years I resisted the diagnoses of CH because antibiotics did work, but not always. I'm in a cycle now that is just kicking my butt!
As for the confusion and "tunnel vision" I have had something similar and my nuero called it an "ocular migraine" I saw pinwheel like shapes in my vision and could not remember common names of things, this lasted about 30 mins, thankfully I have only had 3 of those.
I feel for you.
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EvertBoer
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Re: Looking for Advise
« Reply #5 on: Aug 4th, 2004, 9:11pm » |
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I had a bad ear infection right before I started clusters. I associated my clusters with the ear infection for years (thinking I had swimmer's ear, etc.). I was 19 at the time in 1968. I also had to self-diagnose and pretty much fit all the symptoms. If oxygen helps, then it's probably clusters since oxygen doesn't do anything for my regular migraines (I get those also, including throwing up, etc., but they're nothing compared to the clusters). I'm 55 now, and have 3-5 year remissions between episodes (something to look forward to...remission periods often increase with age). I rarely use any preventatives, since none I tried ever seemed to do much. Over the years the episodes change, but waking up in the middle of the night multiple times, hasn't. About all I use is some melatonin for preventatives. At night I use oxygen (finally bought the equipment), but after each abort, it usually comes back in an hour or so at peak cycle. I use the 1/2 imitrex injections if I get hit more than 3 times at night, and will use the injections during the day (I only get them during the day at the peak of the cycle) if I'm working. I have also become very sensitive when sleeping and will wake up immediately when the symptom first appears, before the pain starts, and at that point oxygen works within 10 minutes or so. My last episode lasted 7 months (the longer the remission with me, the longer the episode), but was able to abort every single one with either oxygen or imitrex...sometimes both. But it is very apparent that everyone and their cycles are different. I don't remember ever getting any when I was doing LSD, mushrooms, etc. But while in a cycle, I can't touch alcohol at all, and if I smoke a little weed, I will get hit as soon as I start coming down so I avoid it also. I have a great neurologist who also suffers from CH.
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lionsound
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Re: Looking for Advise
« Reply #6 on: Aug 5th, 2004, 8:16am » |
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I get the ear infection thing too.I get migraines and clusters. And the confused state your talking about I usually get before a migraine. My speech gets disfluent and i can't think straight and I am very uncoordinated. Sometimes it comes days before or with out any pain at all and it can last for a few days.
Both types of headaches come at the some time for me. I guess it's a migraine thing because it occurs all by itself sometimes.
However, while I'm IN either headache, my wrenched brain..... I can be a b*tch to deal with.
Good luck with the MRI(as many here, mine showed nothing) and the doc on friday.
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judyw
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Re: Looking for Advise
« Reply #7 on: Aug 5th, 2004, 8:48am » |
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Sounds like you have done the first step in the MRI...hope the test comes back normal...What you are experiencing with the ears does not sound abnormal to me...I started as a child and now chronic...over the years I have experienced many different scenarios...One in my late twenties was solely in my right ear...Nothing was found wrong with my ear, but I spent several weeks dizzy, confused. and walking like a drunk...even walked into the side of a moving car in the parking lot, thankfully...I still get pain in my ear just before being hit at times...has even flipflopped to the left side on occasion...143
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