Author |
Topic: Clusterhead or Cluster****ed ? (Read 313 times) |
|
jeff405
New Board Newbie
I love YaBB 1G - SP1!
Posts: 2
|
 |
Clusterhead or Cluster****ed ?
« on: Feb 22nd, 2005, 7:26pm » |
 Quote  Modify
|
I have had headaches in different forms and intensity for most of my life. Now 34, I remember the first very bad headache I got when I was about 10 or 11.
For the past 5 or 6 years I have been experiencing a different type of headache or maybe its just the same but more intense.
What brought me here was a search for a possible solution or answers or even a little more insite as to what is going on as I just had an "attack" on Sunday afternoon and then again yesterday afternoon.
I would say over the last couple years, I've only had this happen maybe 6 or 7 times but man, I don't care to ever have it happen again.
The first real bad headache I had was about 2 years ago. It was the first time I experienced spotty vision, numbness in the fingers of my left hand, the inability to speak clearly. I thought I was having a stroke, but I didn't know what a stroke felt like. About 10 minutes after the spotty vision started, I had a sharp pain which felt like someone shoving a glowing red needle into my right temple by way of my right eye socket and this never let up nor did I have the throbbing pain of a normal headache, it was constant steady pain and almost unbearable.
With a cold washcloth over my eyes, complete darkness and no sound, I could manage to get to sleep. 5 or 6 hours of sleep seems to do the trick.
I have read that some of you can't, but since I have irregular sleep habits, I don't have a problem staying asleep once I get there.
Wanting to follow through with what happened, I went to a Dr. to see what was going on.
I was given some pretty general tests, even some that probably didn't really apply but I was willing to blame anything and accept any solution.
Some questions about my heart came up, they were examined and evaluated but ended up being ok. Blood tests revealed everything was within the norm.
I had a CT scan as well as a sleep apnia study, which was suggested after I mentioned concerns about my sleep habits and that I sleep so soundly that I've been told that I breathe irregularly. The study produced results that indicate I might have some apnia episodes while sleeping, but nothing to be that concerned about as I don't have a lot of the troublesome characteristics of someone who does suffer from full blown apnia.
I was then sent to a ear, nose and throat specialist who seemed to know a little about migraines and cluster headaches.
He prescibed Imitrex and Propranolol (as a preventative). The imitrex I was instructed, to take at the first sign of a headache setting in (usually the spotty vision) which I tried on numerous occasions.
It didn't do a thing !! I had better results from taking a double dose of Tylenol3 w/ Codeine that my dentist prescribed. At least it would slow things down enough for me to get to sleep.
Since the time I went to the Dr. 2 years ago, I have probably had about 10 headaches in the severe category. I have gone back to the Dr. a couple times where they have given me different things to try.
Right now, they have me trying Relpax (eletriptan HBr) 40mg, which also seems to do absolutely nothing. I'm trying to get ahold of my Dentist now because I'm out of Tylenol3's.
This is the first time I've ever had this happen back to back. Normally, I will have one and then I'm good for at least a week, sometimes months. Its really hard to say. They come on strong and there is no way to forcast it.
I've heard and read that everyone has a trigger and its up to me to find out what triggers mine and stay away from it. I have my ideas, but in my trial and error phases, I'd really like to find something that helps as the one I had yesterday had me begging to be put out of my misery. I was asked what I wanted, and I do recall asking for a loaded gun.
I don't know about the rest of you, but after your headache or the day after your headache. Do you have what I refer to as a "tender brain" ?
If I cough, bend over or make sudden movement with my head, I have a shooting pain in the area targeted by the headache. My vision also isn't 100%. Not sure if this is normal, but its what I am experiencing now as I have after every other headache of this intensity.
With a slight cold, its another miserable day but not near as bad as yesterday.
At any point Sunday or Yesterday afternoon when I was trying to get comfortable, writhing in pain, I would have taken anything that made me feel better or just knocked me out.
Are there any over the counter knockout medications, household concoctions or should I just try running head first into a brick wall next time ?
Thank you..
|
|
 IP Logged |
|
|
|
Filbert
New Board Veteran
"Gravy-pure gravy and don't forget it."
Gender: 
Posts: 241
|
|
Re: Clusterhead or Cluster****ed ?
« Reply #1 on: Feb 22nd, 2005, 8:51pm » |
Quote Modify
|
Jeff welcome to the board and sorry you're suffering at the present time. It does seem from what you have described that it is more likely that you suffer from migraine rather than CH. Virtually every CH sufferer finds it impossible to lie down during an attack.
Your priority should be to try and get a diagnosis from your GP or a neuro. Still, take the quiz on the left and that should give you a better idea about whether it could be CH or not.
All the best Filbert.
|
|
IP Logged |
|
|
|
Kris_in_SJ
New Board Hall of Famer
There's no place like home.
Gender: 
Posts: 1539
|
|
Re: Clusterhead or Cluster****ed ?
« Reply #2 on: Feb 22nd, 2005, 9:02pm » |
Quote Modify
|
Hi Jeff,
So sorry you're suffering!
My first suggestion would be to take the cluster quiz over to the left of this board. From what you've described so far, what you have sounds more like migraines than clusters. Also read the medical info to the left - it gives a very accurate description of cluster headaches.
Most cluster sufferers don't have difficulty with weakness, numbness in extremities, or problems with vision (unless our contacts are out). We just have severe, unrelenting, suicidal pain behind one eye/temple area that usually lasts less than 2-3 hours max.
If you don't pass the cluster quiz, you can be sure there are support boards better suited for you.
First and foremost ... get a diagnosis from a good neurologist. Keep a headache diary and take it with you.
Best Wishes,
Kris
|
|
IP Logged |
I'm a small woman in small town being chased by a VERY BIG BEAST!
|
|
|
jeff405
New Board Newbie
I love YaBB 1G - SP1!
Posts: 2
|
|
Re: Clusterhead or Cluster****ed ?
« Reply #3 on: Feb 22nd, 2005, 11:20pm » |
Quote Modify
|
Thats where I'm stumped.. it seems that I have a lot of CH symptoms but I don't "quite" match the criteria, but the ones that don't quite fit must mean I'm a migraine sufferer.
I've been to the Dr. about a dozen times in the past 2 years. Their solutions have been what I have been taking, and they aren't working. Since then though, I've gotten a divorce and I no longer have insurance that was previously furnished by my Wife's employer. The BCBS insurance was nice for that, but it won't be if I want to have a Dr. dig deeper than whats already been done.
At this point, I'm thinking its probably more up to what I can do for myself than what a Dr. can prescribe for me.
Of the 16 questions, 9 were answered with a "Yes" and some of the "No's" were answered that way because they don't quite apply.
eg:
#1) Do your headaches normally last LESS THAN 15 minutes?
Never
#2) Do your headaches normally last MORE THAN 4 hours?
No - Always more than 3, but I'm not sure because I usually make it to sleep and have always slept for more than 6 hours after falling asleep (with help from medication)
- So I answered Yes
#3) Do your headaches normally switch sides from day to day or during a headache?
No Always on the right side, behind my right eye.
#4) When you have a headache, do you normally seek a quiet, dark place?
This one kind of stumped me when I got to the bottom and read the "Evaluation".
Questions 1-8 are not normally associated with cluster headaches. If you answered "Yes" to a few of these questions, you probably don't suffer from cluster headaches.
So a correct assumption would be that by answering Yes to this one would indicate that I "probably" don't suffer from CH - Or, that a CH sufferer would NOT usually seek a quiet dark place ?
#5) When you have a headache, do you normally want to be around other people?
No
#6) When you have a headache, can you normally lay down and be motionless?
I don't have a choice, I have to lay down as I can't do anything else. Standing up seems to make the pain worse. Laying down isn't easy either as I would rather be banging my head against a wall, but its all that I can do.. pretty much useless. I don't lay down as If I'm tired, I tend to lay there for anywhere from an hour to 3 hours trying to get a position most comfortable while holding a wet washcloth over my eyes.
#7) When you have a headache, can you normally go to sleep to make it go away?
I have to go to sleep to make it go away, there is no other way that I know of.
# When you have a headache, do you normally experience nausea?
Yes, but not always
#9) Are your headaches always on the same side of your head?
Yes, always
#10) Do your headaches normally wake you up from a sound sleep?
As I mentioned in my first post. I sleep so soundly, I don't know that anything can wake me up once I'm sleeping. It was the reason for my sleep apnia study.
Which was odd.. they hook you up with about 30 wires stuck to different parts of your body, put you in a small strange room and tell you to sleep normal.. yeah right.
There are days that I wake up with the same feelings I had today, as described in my first post.. "tender brain" where I have some soreness or pain in an area behind my right eye of I move suddenly or cough. I would suspect that this may have been the result of a headache while I was asleep.
#11) Do your headaches normally occur at the same time of the year and same times each day?
No - Any time of year, any time of day (but more often in spring and fall)
#12) Do you normally experience a stuffy nostril on the same side of the face as the pain?
Yesterday, I could breath fine.. 30 minutes later I was plugged up like I had jammed a cotex up each nostril.
#13) Do you normally experience a "droopy" eyelid on the same side of the face as the pain?
Not sure, as when its in full force.. I can't open either of my eyes as the light intensifies the pain it seems. I would rather keep them squeezed shut to avoid any light getting in. I don't notice if one is droopy.
#14) Do you normally go from totally pain free to totally debilitated in 5-10 minutes?
Yes, usually within 10-15 minutes of vision problems the pain is unbearable. The longer I try to see or accomplish a task, the worse it will get.
#15) Do you normally go from totally debilitated to totally pain free in 5-10 minutes?
I don't really know, as the only way I have "Ever" been able to deal with this happening is to sleep it off.
Its not like I can lay down and go to sleep right away.
Yesterday for example, the pain behind my right eye was so intense that I thought it better to lay down than to try and walk or stand up which is almost impossible when opening your eyes makes it more painful.
I laid there for close to 3 hours in agony before I finally managed to go to sleep with the help of some medication.
#16) When you have a headache, do you walk, pace, bash your head, thrash, scream?
Until I pass out, yes.
If my description is more of a migrain sufferer, then perhaps I posted in the wrong forum.
I'm sorry..
|
|
IP Logged |
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender:
Posts: 1796
|
|
Re: Clusterhead or Cluster****ed ?
« Reply #4 on: Feb 23rd, 2005, 8:09am » |
Quote Modify
|
Your history is so complex that I think it's not good trying to work out a diagnosis/treatment by yourself. While the absence of insurance will be a problem, consider looking around for a headache clinic/specialist--docs who have experience with headache. (Many neurologists don't have the skill needed.)
Look in OUCH for a section with recommended docs and tell us where you live: Someone might have a lead for you.
|
|
IP Logged |
Bob Johnson
|
|
|
JJA
New Board Old Timer
Gender:
Posts: 279
|
|
Re: Clusterhead or Cluster****ed ?
« Reply #5 on: Feb 23rd, 2005, 8:36am » |
Quote Modify
|
on Feb 22nd, 2005, 11:20pm, jeff405 wrote:| I don't know that anything can wake me up once I'm sleeping. |
|
I do...a cluster headache. I wouldn't wake up if a train went through my bedroom, but I can't sleep through a cluster. I think it could wake someone out of a coma.
Don't get hung up on the "seeking a dark place" thing. It's meant to catch migraineurs (that's a usual behavior during migraines), but it applies to some CHers too. I seek a dark quiet place when I have a CH because EVERYTHING bothers me...light, sound, a song stuck in my head. Mostly I seek privacy.
Some of your answers sound like CH, but for the most part you don't fit (my opinion). You're not a text book case, that's for sure. I'm not chasing you away. Stick around and ask questions.
I hope you get some answers.
Jesse
|
|
IP Logged |
Is it illegal because it's dangerous or is it dangerous because it's illegal? Our drug laws are ruining lives.
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender:
Posts: 1796
|
|
Re: Clusterhead or Cluster****ed ?
« Reply #7 on: Feb 23rd, 2005, 9:43am » |
Quote Modify
|
Ref. your insurance problems:
------------------- WWW.HEALTHINSURANCEINFO.NET Provided by Georgetown University. "Consumer Guide for Getting and Keeping Health Insurance." State by state guide to protections around health insurance.
POTENTIAL SOURCES OF INFORMATION AND ASSISTANCE IF YOU HAVE LOST COVERAGE BECAUSE OF LOSS OF EMPLOYER COVERAGE.
Because obtaining coverage for preexisting conditions (CH) is usually difficult, impossible, and/or expensive, searching a variety of sources is often required. This is not a comprehensive list of sources but a few suggestioins copied from the Prostate Problems Mailing List (10/31/01).
1. Group coverage may be obtained through professional associations, school alumni associations, or fraternal organizations.
2. National Association for Socially Responsible Organizations, a nonprofit cooperative based in Wasington, D.C.. The group doesn't sell health insurance but it provides referrals to other groups which might be able to help find coverage. Phone, 800/638-8113; info@nasro-co-op.com
3. Working Today, an advocacy and service group representing all types of independent workers. 212/366-6066; working1@tiac.net www.workingtoday.org.
4. Women, Inc. a Los Angeles based membership group for female entrepreneurs. 800/930-3993; womeninc@aol.com www.womeninc.com.
5. The Health Insurance Portability and Accountability Act of 1966 (HIPAA) requires insurance companies to "convert" group health plans to an individual plan which covers the preexisting conditions which was covered when the person was in a group plan. The person must have used the COBRA benefit before using HIPAA. (You may have to call your state insurance office to get information/contacts.)
6. States often have risk pool programs which allow limited coverage for preexisting problems. You might start by looking at the Georgetown University web site mentioned above and/or calling your state insurance office.
|
|
IP Logged |
Bob Johnson
|
|
|
BobG
New Board Hall of Famer
Gender:
Posts: 5747
|
|
Re: Clusterhead or Cluster****ed ?
« Reply #8 on: Feb 23rd, 2005, 12:59pm » |
Quote Modify
|
This only my opinion and I'm not a doctor.
Because of your answers to questions 6, 7 & 10 I don't think you have cluster headaches.
I do not know what is causing your pain but hope you find relief soon.
|
|
IP Logged |
Stay stressed. Never relax. Never sleep. Ever.
|
|
|
Margi
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
Gender:
Posts: 3757
|
|
Re: Clusterhead or Cluster****ed ?
« Reply #9 on: Feb 23rd, 2005, 1:12pm » |
Quote Modify
|
Agree with you Bob. Jeff, from your answers (and I'm not a doctor either, but I AM a migrainer), I'd say you have classic migraine with aura. I go through exactly what you do (except I don't bang my head) - but I have to lay down, I can't stand light, and sleep is the only thing that will make it go away. My husband is a clusterhead and these things do not apply to him.
Ask your doctor about oxygen (as prescribed for clusterheads). It does help us migrainers as well if you get on it during the aura phase (vision disturbance).
And, last - get down on your knees right now and thank God that you are not having clusters. You know that pain you're having now? Cluster is WAY worse. 
Hope you find some relief, Jeff
|
|
IP Logged |
http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
|
|
|
lionsound
CH.com Alumnus
New Board Hall of Famer
breathe
Gender:
Posts: 2021
|
|
Re: Clusterhead or Cluster****ed ?
« Reply #10 on: Feb 23rd, 2005, 10:05pm » |
Quote Modify
|
Hey Jeff,
I think the most important thing you can do here is write down in a headache journal about your headaches and get to a neuro for a good diagnosis. I was told for years I had migraines and once one of my HA was witnessed in the ER it was clear I had CH( I had never even heard of them before that). I also have migraine and ice picks. I hope that you aren't as gifted as I am, but I think you've got a lot going on and honestly, sometimes it's hard to tell when they get all tangled up together.
I know you don't have insurance, and I hate to see you suffer. have you ever gone to the ER when your head hurts? Maybe you can get some appropriate meds to try from there or at a clinic or something. At least they would have oxygen. The oxygen , as Margi said, can help with migraines and CH...I use it for both.
May you be Pain Free,
lionsound
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss