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Topic: New and at my witts end (Read 338 times) |
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She-ra_mommy
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New and at my witts end
« on: May 9th, 2006, 10:50pm » |
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I had my first ch in 04 after my father passed away and after 6 weeks and 50 mg of nortitripolene it went away. the thid March I was slammed again this year it was stronger and harder. I have it it for 8 weeks. I have been on 100mg nortitripolenn mirginal nose spray for mirgrains. Was on medrol pack. I was also on some pain meds but could only be on it for seven day because of the risk of stroke.
I have gotten no relief.
I went to the nuruologist she said Cluster mirgrians.
I feel like someone has taken a bat to the left side of my face several times a day. My face is numb, ican't rember thing, my speech is slured.I have a headache all day it will grow and thencalm to manageable. Ialso have dizzy spells and fallen a couple times.
I am fursturated , my husband is frustrated. My pain never goes below a 3 out of 10. today It has been around 10 all day.
If I go to the Dr. they will just put me on more meds nothing work. I swear I am going to take a hammer to my head . the mirganal works for about 1/2 hour.
Hot showers don't work NOthing works!
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pfunk
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Re: New and at my witts end
« Reply #1 on: May 9th, 2006, 11:02pm » |
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Hello. Sorry and glad that you have had to find our family. Stick around , read up and ask questions. And really listen to the answers there are so many of us here who have gone through, if not the same than similar things to what you are experiencing. We are all here to help and none of us will steer you wrong. Ther is someone around here that can/will give you the advice you need. Have you tried oxygen? It really has worked wonders for many of us. Stick around, we'll start to grow on ya. Much luv and pain free wishes.
Patrick
P.S. Check out the med. board for other options to speak with your doc about.
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She-ra_mommy
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Re: New and at my witts end
« Reply #2 on: May 9th, 2006, 11:16pm » |
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I have not tried oxogen. The dr. has not suggested it. I was read that some say Imetrx shot works is the the same as the pill. I had bad chest pains with the pill.
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Richr8
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Re: New and at my witts end
« Reply #3 on: May 9th, 2006, 11:20pm » |
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Welcome She-Ra,
I don'rt see where you have tried any typical CH remedies or meds. Please research the information on this link and share with your Neuro if necessary:
http://www.brightok.net/~mnjday/chtherapy.pdf
Also, I can't say enough about Oxygen for aborting individual attacks as Patrick says.
Read all that you can and ccome back with any questions you may have.
You do not have to be alone with this condition. All of us here know exactly what you are going through and are very willing to help.
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pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
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alchemy
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Re: New and at my witts end
« Reply #4 on: May 9th, 2006, 11:20pm » |
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the shot works alot faster than the pill.
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pfunk
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Re: New and at my witts end
« Reply #5 on: May 9th, 2006, 11:25pm » |
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Definitely, the shot works faster. I don't know anything about the chest pains but it mat be something to ask the docs about. Preventatives as well as abortive meds may also decrease the number and intensity of your hits. Keep us posted.  
Patrick
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tanner
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Re: New and at my witts end
« Reply #6 on: May 9th, 2006, 11:28pm » |
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HI, I am sorry to hear about the pain you are going through!
It sounds to me like you are just at the beginning stage of figuring out what is wrong with you and what you can do about it.
You have come to the right place to do that. You positively need to educate yourself using all of the resources here and you will probably need to educate your doc as well. I have had to enlighten or leave several.
Please stick around and check out all the other more specific parts of this site, but be sure to come back here to keep us up to date. There is more help and love around this place than you can possibly imagine. Especially when we get into long off topic threads that have nothing to do with the headaches. I can't speak for everyone else but i often get caught up in the political or controversial discussions as a way to remind me that I have a life beyond this freaking beast!
....welcome home.....tim
oh and btw, you can check your wit at the door 
yuo have entered the nitwit zone
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I AM THE MASTER OF MY MIND, MY BODY, AND MY EMOTIONS...
it's just my head that sucks...http://www.centerforlit.com/
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She-ra_mommy
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Re: New and at my witts end
« Reply #7 on: May 9th, 2006, 11:48pm » |
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I think my Nurologist is treating it as a migrain and not Ch.
I forgot to mention I am also a diabetic so steriod are not a good option for me. I also have had a bad reaction to Imitrex. My next appt at the nuro is may 25. My dh wants to take me to the hospital. I am fighting going I don't know what they will do to me. But on the kip scale I am 10. I don't know what to do? any suggestions?
[flash=200,200][/flash]
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cekelle
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Re: New and at my witts end
« Reply #8 on: May 9th, 2006, 11:59pm » |
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Hi! Wecome and sorry for your CH's. Try the Oxygen, it does help some of us. Be sure to ask for 15 liters per minute on the regulator. They may think you are insane for asking for that amount. but 10-20 minutes with the O2 flowing at that rate can be a lifesaver. Also, the Imitrex injections help some of us too. I am on them now and they are a relief. For me the headache will get worse before it gets better typically within 1 minute of the shot, but when it does work it only takes about 10-15 minutes and then I am feeling "normal". You must however take the shot when you first feel like there may be a headache coming on. Don't wait for it to ramp up and get worse or by the time you give yourself the shot the CH may be about over anyway, but if it's bad enough go ahead and take the shot. If it works it's better than nothing. Hope I've been of some help. Tell your husband to hang in there. My wife gets these too and she's had them for at least 8 years (maybe longer). So having 2 of us under one roof is quite a feat. Have him browse the site too. There is also a supporters corner for family members of sufferers if he has any questions.
Sending pain free vibes your way!
Chris
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BlueMeanie
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Re: New and at my witts end
« Reply #9 on: May 10th, 2006, 12:54am » |
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on May 9th, 2006, 10:50pm, She-ra_mommy wrote:I feel like someone has taken a bat to the left side of my face several times a day.
My face is numb,
i can't rember thing,
my speech is slured.
I have a headache all day
I also have dizzy spells
and fallen a couple times. |
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I feel for you, as CH's are close to the worst pain around. What you're describing doesn't sound like atypical CH symptoms though. I don't want to scare you, but have you had an MRI and/or other tests to rule out anything else that may be wrong ?
Most people with CH's don't fall down, get dizzy, etc. as you describe.
Hope you get things worked out. Good luck.
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sandie99
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Re: New and at my witts end
« Reply #10 on: May 10th, 2006, 2:34am » |
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I'm so sorry that you're hurting... 
Before you go see your neuro later this month, do read a lot info about medications and treatments. Oxygen, imitrex, verapamil, kutzu are just few which have helped people in here. There are no docs in here, just people who have tried and failed, tried and succeeded in here. You will find treatment, which will work with your pain, I'm sure out it!
(With my last cycle the only med I took was can of red bull with ice s soon as the hit begun. Worked with me quickly: I went from terrorising pain to pain free within 5 minutes. Doesn't work for everyone, but I was amazed that it helped me.)
Now, when you do to your neuro, asking for that MRI is not a bad thing at all. I had that done and it was a relief to know that all I have is "just" ch.
What comes to support, advice and place to vent, this is it. You can always come here and let us know how you feel. The lot in here will understand and help you only in the way other ch sufferers and their supporters can.
Let us know how things progress, okay?
Best wishes & PF time,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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chewy
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Re: New and at my witts end
« Reply #11 on: May 10th, 2006, 2:39am » |
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If your neurologist hasn't suggested an MRI with the symptoms you present then I would find a new Doc.
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Paul98
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Re: New and at my witts end
« Reply #12 on: May 10th, 2006, 5:58am » |
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I agree with Chewy. Ask your Doc. for a MRI to rule out other causes. Your symptoms are not typical of CH. Memory loss, slurred speach and dizziness should be enough for your Doc. to schedule an MRI. If he balks, get a new Doc.
In the meantime, read up on this site and welcome aboard. Sorry you are having such a rough time.
-P.
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vig
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Re: New and at my witts end
« Reply #13 on: May 10th, 2006, 8:21am » |
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I agree with Blue and CHewy...
get to another doctor, it could be CH, but there's several flags in your list that don't line up....
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rickyshot
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Re: New and at my witts end
« Reply #14 on: May 10th, 2006, 8:29am » |
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HI. I have been a complicated and I mean really complicated migraneur and CH for 22 years. You absolutely need testing to rule out any other causes for your symptoms besides migraines. I have had all the symptoms you are having and more. I have been hospitalized two times for a week and countless emergency visits with just the migraines alone due to complications. I don't want to scare you but many people with complicated migraines are at high risk for stroke. In fact three years ago I had a TIA (trans ischemic attack or mini stroke) from all the spasms in my head after days of migraine with slurred speech paralysis for five days. I have recovered and take baby aspirin daily along with my other meds.
As for the clusters read up the info here. They are of a different nature but the pain very intense. I found out about oxygen here and went to a new neuro. I printed out the info and pic and got hooked up. A lifesaver.
Unfortunately for me no meds has ever worked and I have been through the gamut over 20 years. The only two things that sort of work for me is oxygen and steroids. Steroids are about 3 times a year for a two week period with taper when I got really bad and headed for disability.
Shit just talking about this is depressing me
From Ricky with the cracked head which affected her life in a big way.
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BarbaraD
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Re: New and at my witts end
« Reply #15 on: May 10th, 2006, 9:48am » |
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And then on the other hand, the dizzyness and the other stuff could be side effects of the meds. Either way - you need to check with your doc and have a MRI and find out what side effects the meds have.
Hugs BD
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What don't kill ya, Makes ya stonger!
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aprilbee
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Re: New and at my witts end
« Reply #16 on: May 10th, 2006, 10:16am » |
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I agree w/the others, you definitely need an MRI to rule out more serious conditions...Hope you find the relief you need very soon...
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Charlie
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Re: New and at my witts end
« Reply #17 on: May 10th, 2006, 5:09pm » |
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Sorry you are in such pain. Pay attention to these people. They know what they are doing. You might try this technique in any case:
Dr. Wright’s Circulatory Technique:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.
I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.
Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.
This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.
Charlie
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Jonny
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Re: New and at my witts end
« Reply #18 on: May 10th, 2006, 5:11pm » |
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Typing with a "10" must be a bitch, eh?
I couldnt do it 
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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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She-ra_mommy
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I have asked for an MRI
« Reply #19 on: May 10th, 2006, 5:19pm » |
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she tells me when you come in we will talk about, I did have an MRI 2 years ago.
I am going thru my general praticiner for a second opion referal.
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thomas
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Re: New and at my witts end
« Reply #20 on: May 10th, 2006, 5:23pm » |
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on May 10th, 2006, 5:11pm, Jonny wrote:Typing with a "10" must be a bitch, eh?
I couldnt do it |
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I usually break shit, myself. And I'm way to blind to type at that point.
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Religion and sex are powerplays. Manipulate the people for the money they pay. Selling skin, selling God, the numbers look the same on their credit cards. Triptans cause rebounds. Learn it, believe it, live it. I use triptans as the absolute LAST RESORT when treating my CH.
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rickyshot
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Re: New and at my witts end
« Reply #21 on: May 11th, 2006, 8:55am » |
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The highest I ever had was an 8 IMO and I ran around the house breaking dishes and was rolling on the floor. Perception is a strange thing. She is obviously uncontrolled and her pain feels like a 10 to her.
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unsolved1
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Re: New and at my witts end
« Reply #22 on: May 11th, 2006, 8:58am » |
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on May 10th, 2006, 5:11pm, Jonny wrote:Typing with a "10" must be a bitch, eh?
I couldnt do it |
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I'm usually having a little one-on-one conversation with GOD right about now. lol
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She-ra_mommy
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Re: New and at my witts end
« Reply #23 on: May 11th, 2006, 7:16pm » |
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oh i have ben talking to God a lot. I don't like to trow thinks and stuff It freaks my Husband out! He knows it's bad when I don't want any of the cats around me and I get nasty with them. If I start swearing dh really freaks. I'm the type of person when I am in pain leave me alone and stay out of my way. the last time I threw something it heat a wall and bounced back and hit me in the head. and when I hit things I usualy hurt myself I broke a finger and really bruised my head. 
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