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Jody
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A few questions...again
« on: Mar 23rd, 2006, 11:25am » |
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Here goes.... pegg has been helping me to deal with the headaches that I have unlill recently dealt with through stuborness, asprin, ice , cussing and what not, the med I took lasted about 5 days then I got one of the worst headaches I ve had in a long time, we aborted with imitrix, what I dont understand is what to do now, this is all new to me yet and I ve always been told its migraine or sinus or what not I listen to Pegg , and do understand some things but it is still confusing does this mean I take the med weekly? what? or for now keep experimenting?
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LeLimey
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Re: A few questions...again
« Reply #1 on: Mar 23rd, 2006, 11:30am » |
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Jody hi! Its nice to see you posting again.
In the past when you've had these episodes how long have they lasted? Depending on whether they last for weeks or months would depend on whether you are better off stcking to just using abortives (like imitrex) or using preventatives such as verapamil or alternatives as well. The reason for this is most prevents take a few weeks to kick in and so aren't worth starting if your cycles are relatively short. Also there is a school of thought that using them can lengthen your cycles so once again, if you have relatively short cycles you don't want to mess with it too much.
Let us know and we can help you by giving you more info on which to base your choices!
Oh.. and keep posting!
Helen
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nani
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Re: A few questions...again
« Reply #2 on: Mar 23rd, 2006, 11:38am » |
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Hi Jody. Which med did you use?
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vig
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Re: A few questions...again
« Reply #3 on: Mar 23rd, 2006, 12:02pm » |
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no matter what the 'rules' are...
YOU have to experiment and find out what works best for YOU!
We're all different and we all react differently to different medicines.
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sandie99
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Re: A few questions...again
« Reply #4 on: Mar 23rd, 2006, 12:32pm » |
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Jody,
I add something I wish my first neuro would have told me: it might take some time before you'll find the meds which work for your ch.
But you'll find the right meds and treatments. 
Best wishes & PFdays,
Sanna
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Jasmyn
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Re: A few questions...again
« Reply #5 on: Mar 23rd, 2006, 12:43pm » |
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Experiment with one type of med for at least 2 to 3 weeks if it is a preventative, some of them only start to kick in by then.
Good luck and glad to see you are posting. 
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Jazz
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Charlie
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Re: A few questions...again
« Reply #6 on: Mar 23rd, 2006, 1:05pm » |
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Good advice here.
While no one has mentioned it, I had good results with the beta-blocker: Inderal (Propranolol). I used it as an abortive and after a week or so, it slowed them down a bit until the end of the cycle. Not many here have had that kind of success with it but it might be worth a try.
Here is my technique as well:
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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Redd
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Re: A few questions...again
« Reply #7 on: Mar 23rd, 2006, 1:50pm » |
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The medicine Jody is talking about is that I had him try 15 RC seeds, and he cleared up for those 5 days.
He's chronic, with a worse period in spring, (as for most of us). He's never gone 5 days between hits in many years.
He had gotten hit nightly for 3 nights when I had him drink down the RC seed solution first thing in the AM before he had eaten anything.
Pegg
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LeLimey
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Re: A few questions...again
« Reply #8 on: Mar 23rd, 2006, 2:05pm » |
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Time for another dose don't you think Pegg?!
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MJ
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Re: A few questions...again
« Reply #9 on: Mar 23rd, 2006, 2:29pm » |
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on Mar 23rd, 2006, 11:25am, Jody wrote:| the med I took lasted about 5 days then I got one of the worst headaches I ve had in a long time, we aborted with imitrix, what I dont understand is what to do now, this is all new to me yet |
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Try the seeds last thing at night especially if you get hit hard during sleep.
After 5 days and they worked for that period without side effects try them again.
Dont know how imitrex and seeds mesh but I would use the seeds 3 or 4 instead of imitrex as an abort, "powdered" and sublingual. (soaked dry in mouth under tongue) works well for me within 10-20 minutes. You may need to have a buildup in your system first.
Many people myself as well had to have multiple doses. My last was allmost a month ago. Though my methods are different than suggested. I start with a 15 seed soak solution then I dose twice daily for 7-10 days at a time with 4-5 seeds sublinqual.
Read clusterbusters.com faqs for sure.
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Jonny
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Re: A few questions...again
« Reply #10 on: Mar 23rd, 2006, 4:42pm » |
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Have you been diagnosed?
Jody, has a doctor ever gave you any meds to try?
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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.
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Jody
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Re: A few questions...again
« Reply #11 on: Mar 23rd, 2006, 5:38pm » |
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no meds it has always been treated as allergy, sinus and migrains, have had a history of family docs and to be honesy dont much care for any of them since my last accident I basically have to be half dead to see one, what I guess I dont understand is what pegg gave me worked, but why the nasty activity again, it was like three times as bad as the everyday headaches, did I open a can of worms that was better off left alone, Now since the nasty one the other nite I have had three more????
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Jonny
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Re: A few questions...again
« Reply #12 on: Mar 23rd, 2006, 5:46pm » |
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on Mar 23rd, 2006, 5:38pm, Jody wrote:| to be honesy dont much care for any of them since my last accident I basically have to be half dead to see one |
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Oh well, I guess the pain aint that bad that you would seek a doc and meds to stop it.
Good luck to you my friend.
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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.
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Dragnlance
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Re: A few questions...again
« Reply #13 on: Mar 23rd, 2006, 5:46pm » |
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Start taking Kudzu, twice a day. It has reduced my hits, the intensity and the duration. I too am chronic, and believe me, Kudzu is a Godsend!!
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Redd
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Re: A few questions...again
« Reply #14 on: Mar 23rd, 2006, 6:04pm » |
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on Mar 23rd, 2006, 5:46pm, Jonny wrote:
Oh well, I guess the pain aint that bad that you would seek a doc and meds to stop it.
Good luck to you my friend. |
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I love you Brother....but I've been in the room when Jody gets hit. How many years did you go before you got a correct DX? How many here gave up trying to get one, and suffered for years?
I know I did...treated for sinus, allergies and migraine for many years...gave up on docs for 10 years.
Don't go here Jonny... I know you are trying to protect the family...one CHead to another....but I think I know another CHead when I see one.
Pegg
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Jody
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Re: A few questions...again
« Reply #15 on: Mar 23rd, 2006, 6:09pm » |
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I think you took that wrong, I have asked about the headaches, and have tried the things suggested but it has always been the same thing, sinus, allergies, and at one point they thought the accident that I was in had something to do with it, but what you dont understand the insurance I have is only good when I m at work or it is job related, it was never a choice of being in enough pain to see a doc, it has been being told time and time again that this is what we think this is what you are prescribed so I have learned to accept it and cope as best as I knew how excuse me for asking the questions I have
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Dragnlance
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Re: A few questions...again
« Reply #16 on: Mar 23rd, 2006, 6:14pm » |
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JODY!!
You keep asking!!!!! Dont stop!
that is what we are here for!
Ask anything you want. You are part of the family and we will do our best!
I dont know much about RC seeds, so cannot help you there, but trust me, Kudzu works wonders!
I too don't like going to docs because of all the mis-diags I have gotten. Do what I did tho, talk to people at the hospital that work there. Talk to the transcriptionists. Ask them who the best doc is, and who knows about headaches. No one knows better than they do.
Feel free to PM me if you wish!!
Lance
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medic1852
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Re: A few questions...again
« Reply #17 on: Mar 23rd, 2006, 6:19pm » |
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on Mar 23rd, 2006, 6:04pm, Redd715 wrote:
I love you Brother....but I've been in the room when Jody gets hit. How many years did you go before you got a correct DX? How many here gave up trying to get one, and suffered for years?
I know I did...treated for sinus, allergies and migraine for many years...gave up on docs for 10 years.
Don't go here Jonny... I know you are trying to protect the family...one CHead to another....but I think I know another CHead when I see one.
Pegg
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I agree..I wasnt DX until I met an OLD country doctor who is also a dentist...He spoted it right away, he said "you got horner syndrome...does one side of your nose run too...well hell son that is CH..You been taking the wrong meds..." Prior to that I had given up on seeing Doctors cause they all said it was sinusitis, allergies...stuffed cotton up my nose....injected me with Torodol...and did nothing...
Rodger
Now I will go to work....bye
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Jonny
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Re: A few questions...again
« Reply #18 on: Mar 23rd, 2006, 6:34pm » |
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on Mar 23rd, 2006, 6:04pm, Redd715 wrote:| Don't go here Jonny... I know you are trying to protect the family |
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I aint trying to do anything but get this dude to stand up and get help.
I dont need to protect when I know you are on that end, Babe.
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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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Redd
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Re: A few questions...again
« Reply #19 on: Mar 23rd, 2006, 6:41pm » |
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on Mar 23rd, 2006, 6:34pm, Jonny wrote:
I aint trying to do anything but get this dude to stand up and get help.
I dont need to protect when I know you are on that end, Babe.
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That's what he has ME for now dear....
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Jasmyn
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Re: A few questions...again
« Reply #20 on: Mar 24th, 2006, 2:51am » |
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Jonny, you and your reverse psychology 
Jody, it is OK to ask these questions and to have a holy and healthy fear for quacks. To go to some of them is like paying for the wind to blow.
Pegg will recognise the symptoms and if you are on something now that is not going to cost you your arm and leg, then use it for a while. If you see it doesn't work, try something else until you find the correct treatment for you.
When you run out of alternative options, with no success, then... unfortunately you'll have to see a doc(that knows about CH!) to get prescribed the other conventional meds. We depend on these docs for our prescriptions and most of the time we do the prescribing. The only difference is this neuro/doc has the licence to prescribe to the pharmacist, where we don't.
It is a sorry state of affairs where we have to spend thousands to get diagnosed, in the hope that we hit upon the medical professional that knows his CH, just to go through the most expensive tests, that shows up absolutely nothing, just to get a prescription on exactly what you told him in the first place
I have been diagnosed 7 years ago, it was good to know eventually(after 8 years of doubting my sanity) what was the word for this condition. Last year my cycle didn't want to break and I had to travel very far to go and see a neuro, that I first had to do my homework on, to establish if he has any CH knowledge.
The previous neuro of 7 years ago left the country, so my file could not be retrieved and to prove my status as a CHer, I had to go through every available expensive test again that showed nothing wrong with me. All this just to get a prescription to up my dosage of the meds I've been on for many years.
There must come a time when things will change in the medical community and every doc becomes educated on CH and stop wasting our money and keeping us in pain.
This is where this site and its communal knowledge, rate to me personally, higher than the opinion/diagnosis of any GP/neuro.
This was my disgruntled 2 cents, so beat me with a stick! I have CH so sticks don't scare me
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Jazz
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Dragnlance
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Re: A few questions...again
« Reply #21 on: Mar 24th, 2006, 8:51am » |
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Quote:| There must come a time when things will change in the medical community and every doc becomes educated on CH and stop wasting our money and keeping us in pain |
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Hey Jas, You know as well as I do, that will never happen. What we call a waste of money, is the doctor's yearly salary. Do you REALLY think they are there to correct a problem so you won't have to come back????
I DON'T THINK SO!
A doctor's business is called a Practice for 2 reasons, one, they don't really know, so they have to keep practicing, two, they can play dumb and blame it on not enough practice...
Lance
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Jody
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Re: A few questions...again
« Reply #22 on: Mar 24th, 2006, 1:39pm » |
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Since I have met Pegg, I have also talked with my mom who has been a nurse and official family care giver since I can remember, she has taken a look at the history that I have and I think she has seriously concidered that there is things wrong with the statements by the family doc and she is going to help me get the records I need to find out what meds they have had me on because there was alot of things tried and she is also checking into alternative insurance so I will be able to afford the medical expences I have to say thanks for answering some of the questions I have ,and the input also......Jody
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