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tammystryin
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New to this process and feeling and not liking it
 
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My first posting
« on: Dec 17th, 2003, 11:09pm » |
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Hello to everyone.
This is my first posting. I don't know where to begin but let's say after a year and 3 months, I have had to diagnoses myself. MRI's, CAT scans, Spinnal Tap, Tegretol (which didn't work and made me 'stupid' (counldn't handle it), and the list goes on. By this time last year when it all began (September 2002) I had enough hospital braclets to use as a chain garland for the Christmas tree!
Talk about scary!! Intially I thought I was having a stroke, or something of the sort. The neurologogist has been no help at all. I was apparetnly the wrong sex (being female) and the wrong age and not european. 
Oh well. So I started keeping a diary and have asked to be referred back or to another doctor.
That first incident like felt like I had struck the right side of my head on the corner of a table! Ka-Pow! My vision went blurry and and my face went numb (all right side) The feeling went away only 3 days after (numdness and blurred vision). But the Ka-Pow's kept coming on. Long story short, stress sets them off and any sort of sinus blockage. I loose a lot of weight during the really bad episodes, because I have to keep moving. I'm too afraid to stop, thinking that if I do then it's the end. The chriopractor has helped and of course tons of water (which also helps with the weight loss 
I'm not seasonal like my supervisor is (he just hates May and June). Mine are more . . . ? . . . ? Geez, how would you describe it? There are times when I know it is going to happen then there are times when I jump right out of my seat during a meeting and start hopping around. They think I'm nuts!
Thanks to this site, I don't feel so alone and left wondering what's going on with me. If anything, with keeping in close touch with my family doctor and updating him at least, along with this site and other research sites, I feel better now.
Thanks everyone.
Tammy
p.s. Sorry for the spelling and grammar errors I don't see and 'spell check or grammar check buttons' Oops.
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athos
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Re: My first posting
« Reply #1 on: Dec 17th, 2003, 11:18pm » |
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welcome.... there is a wealth of info here... and any questions you have just ask and anyone of us will be happy to answer..
athos
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Linda_Howell
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Re: My first posting
« Reply #2 on: Dec 17th, 2003, 11:30pm » |
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Tammy,
I had to diagnose myself also. Jeez it was real hard. I picked up a medical book. Dr.s don't seem to know how to do that.
However, I have never in 17 years felt numbness or blurred vision.
Have you taken the cluster quiz or read about the cluster traits to the left of where you are reading this now?
I urge you to do so. Good luck to you, and if you have cluster headaches, I welcome you here and wish you didn't HAVE to find us.
LindaH
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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BlueMeanie
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Welcome Tammy.
Check out the meds info. You have to tell the doc what you want to try. Most people start out trying everything under the sun, then realize all that time they could have had O2, Imitrex & others which seem to be the abortive med of choice.
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Mac
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Re: My first posting
« Reply #4 on: Dec 17th, 2003, 11:41pm » |
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Hi Tammy,welcome aboard.
You'll get lots of support and good advice here.People who know where your coming from.Lot's of Canucks here too  Lots of stuff on the site to check as well.Read.
Glen
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Callico
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Re: My first posting
« Reply #5 on: Dec 18th, 2003, 4:32am » |
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Welcome to the madhouse! I'm with the others on reading the material available to the left side of the screen. Take the quiz, and then get as much info as you possibly can. Print out what you think is important and take it withyou to your Dr. A lot of times you will have to help educate them as most have never heard of
CH, let alone seen it.
One thing you mentioned gives me reason to question CH. You said your Chiropractor helps, and that most of us have found to be of no value whatever with CH. Mind you, I am not saying you don't have it, just wondering,
Give us a little more info on how often you get the attacks, how long they last, what meds you have tried and the effects, if any, etc. We want to help if we can.
Wishing you PFDANs
Jerry
BTW, don't worry about spell check or grammar check. Most of us wouldn't know the difference. 
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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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BarbaraD
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Re: My first posting
« Reply #6 on: Dec 18th, 2003, 4:40am » |
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Hey, you talking about MY spelling - I keep telling you I writes Southern...
My vision also gets blurry when I'm getting hit. I'm numb anyhow from the surgery I had, so don't remember that from before the surgery.
Welcome to Clusterville. Sorry you gotta be here, but there's the best info on CH here that you (or your doc) will find.
If your neuro doesn't do it YOUR WAY - get a new one. Most of us have been through several before we found one that "would" help.
Stick around and read everything on this site.
hugs BD
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Charlie
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Re: My first posting
« Reply #7 on: Dec 18th, 2003, 4:47am » |
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Welcome and if you stick around, I guarantee you'll find good ideas and learn of some ways to cope with this horror. Your description sounds like so many.
Here are two links. The first being something to show your friends and employers. It will help them understand that this has nothing to do with what they think of as a "headache." It's definitley worth copying:
http://www.ouch-uk.org/ch/note_colleagues.cfm
This one is to a technique that was very helpful to me:
http://www.netsync.net/users/charlies/
Let us know how you're doing.
Charlie
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hootchdom
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Re: My first posting
« Reply #8 on: Dec 18th, 2003, 4:56am » |
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Tammy,
Welcome aboard, you will find lots of support, lots of advice and lots of information. Read and read, search and search. The archives are a wealth of information if you want to take the time. One thing I have found is no two peoples symptoms are exactly alike or at least let me say we don’t all describe what we go through the same way. I to sometimes get blurred vision. I don’t think it is as much from the “cluster headache” itself as it is from my temporal artery pounding for almost twenty four hours a day. My doc says its not to uncommon. I also think a lot of us suffer from other head discomfort while not going through the cluster headache which seems to scramble with everything and sometimes confuses things.
Hang in there, use us, abuse us, enjoy us and become part of us.
Hootchdom
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Turts
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Re: My first posting
« Reply #9 on: Dec 18th, 2003, 5:57am » |
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Hey Tammy,
Youse dont hav ta wurry bout no spellin nor grammer. Aslong as u can spell O2 and H2O ya on ya way to sum releif
Turts
Oh yeah, if yas can read check out the buttins totha left.
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'I'm very brave generally,' he went on in a low voice: 'only today I happen to have a headache.' (Lewis Carroll)
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Paigelle
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Hey Tammy! Welcome to our little patch of heaven or hell depends on how much pain we are in! I understand your boss hating May and June. I despise November and part of December. I also despise Drs who think just because we are women we can't suffer from CH. Lord knows there are enough of us here to prove the medical society wrong. Good luck and read everything.
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ZAIRA
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Re: My first posting
« Reply #11 on: Dec 18th, 2003, 8:19am » |
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A very warm WELCOME to the site and MB.
I’m sorry that you suffer from this shit. 
But you will find help and advice and support here…… to keep you sane.....
Keep posting, Zaira
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Love yourself, Love others, Love often, Forever!
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pubgirl
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Hello Tammy
Just welcome 
Wendy
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thomas
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Welcome aboard Tammy, sorry you have to be here.
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jadedgazer
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This isn't life threatening, just life altering
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Re: My first posting
« Reply #14 on: Dec 18th, 2003, 8:53am » |
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Welcome Tammy,
Sorry you had to find this place, but you will find that there is a ton of information and even more support to be found here.
I also get some blurred vision and some numbness during an attack. The numbness is more like having insulation in my face though. My neuro said it wasn't the "norm" but then nothing about CH is normal.
Hang in there and read, read, read...go back to your doctors armed with knowledge so that you can help them treat you properly.
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Jackie S.
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Hirvimaki
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Re: My first posting
« Reply #15 on: Dec 18th, 2003, 9:05am » |
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Welcome, Tammy.
I won't repeat what has been said above, but read, read, read...
Hirvimaki
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"What makes us discontented with our condition is the absurdly exaggerated idea we have of the happiness of others."
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BlueMeanie
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on Dec 18th, 2003, 4:32am, Callico_Kid wrote:| BTW, don't worry about spell check or grammar check. Most of us wouldn't know the difference. |
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LMAO. Maybee wee ned to get DJ to gives us a speelinng checkker.
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| « Last Edit: Dec 18th, 2003, 10:34am by YOSIMITE » |
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Killroy 2.0
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Re: My first posting
« Reply #17 on: Dec 18th, 2003, 2:23pm » |
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Welcome.
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maggie_may
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Re: My first posting
« Reply #18 on: Dec 18th, 2003, 2:52pm » |
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Welcome to the board, Tammy!
So sorry you have to be here, but glad you found us. There's lots of people here to support you and help if you've got questions regarding anything about CH.
You're one of the luckier (  ) who've found a diagnosis sooner rather than later. I went close to 9 years before being property diagnosed, and I know there are several others who have gone lots longer than that. You might want to talk to your DR about o2 and imitrex. It seems to help lots of people around here, and it helps me too. I don't get the numbness, but I do get the fuzzy vision along with dizziness.
welcome again, and wishing you pfdans,
maggie
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rgeneseo
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Re: My first posting
« Reply #19 on: Dec 18th, 2003, 4:00pm » |
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Hi Tammy- This is my first too. Wonderful former boss gave me this computer for xmas! I have basilar and trigeminal autonomic migraines. First time the basilar hit 4 years ago scared the bejesus ago. Driving to work on the xway and my vision went double. Started doing it every day an hour after I got, lasted an hour, then went away. Blamed meds I was taking for other health problems. Then one day, it hit so seriously I thought I was having a stroke. I turned the car around and had to crawl up my steps to call an ambulance. Of course, it was over in an hour. Then, he headache hit. As far as "compassionate?" doctors and women??? I think they all consider migraines a hysterical female complaint that would remedy itself if we all just stopped watching soap operas and involve ourselves more in making home more comfortable for him. If you don't like your doctor, go to another one! Check with the National Headache Foundation (800) 843-2256 - or better yet, join for $20. They send me all kinds of info the minute I ask, including lists of doctors in my area who concentrate on nothing but migraines. I have applied for Soc Sec because mine are so severe that I lose my balance, fall over, pass out (from the basilar migraines) and the trigeminal autonomic (our little cluster headaches) are so bad that they have that affect on my nervous system (pulse down to 50, etc.) The cluster headaches didn't start until about a year ago until I passed out on the sidewalk standing next to the Dist. Admin. Tacky? Happened twice more and he finally caught on that there might be something wrong. Smart man for a goverment employee. (Yes, I'm a state worker). I stopped working in July.
Take heart. You're not alone. Tell your doctor to hit the bricks if you're not happy with him. YOUR paying HIM.[color=Black][/color]I have a wonderful doctor who calls me back within a half an hour when I leave a message with his service. From reading some of your other messages, sounds like we're not alone in our struggle. I'll watch for name.
Robin in Rochester
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jonny
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on Dec 18th, 2003, 4:00pm, rgeneseo wrote:| Hi Tammy- This is my first too. I have basilar and trigeminal autonomic migraines. |
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pubgirl
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Robin in Rochester
Sorry to be so nosy but I am a bit confused about what you have been diagnosed with. I understand BAMs, but as far as I understand it Trigeminal Autonomic headache (or Cephalgia) is the name of a group of primary headaches known as TACs of which CH is one type(Paroxysmal hemicrania and SUNCT being the other two)
I have actually never read of anything called 'Trigeminal Autonomic migraine' before.
It isn't a diagnosis just to say you have 'a TAC' as they are all different and are treated differently also the main treatment for aborting CH for example (Triptans) can be dangerous for a BAM sufferer.
Are you saying that you get BAM AND clusters? (there is a guy in the UK who gets both so I know this is possible)
Sorry to be so intrusive, but you will only really get true help here if your TAC is Clusters.
Wendy
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| « Last Edit: Dec 18th, 2003, 7:35pm by pubgirl » |
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