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Topic: Wow, I am not alone after all! (Read 414 times) |
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addison
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Wow, I am not alone after all!
« on: Apr 28th, 2006, 4:27am » |
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Hi,
This is my first time with CH.com. I have been reading testimonials and other lit. all night long, and have literally been moved to tears. Your words are mine, your experiences are mine, your agony is mine. God bless you all! You are in my prayers as I know what suffering you go through. I am so thankful that I have found you--I have been alone with this for 10 years. No one has ever understood my pain.
I have been going through my current cycle of CH for about a month. They are worse this year than ever. I recently made my first visit to the ER for a cluster. The pain was demonic, it lasted for hours, and I was at the point where I believed if I did not get help I would not survive. My 3AM ER visit became a 1 1/2 day stint in ICU. I had overdosed on Excedrin. I have no idea how much I took that night, I was in such terrible pain. I was made to drink charcoal and a med to stop and reverse the damage I had done to my liver. At the time, I did not even care about the od, only getting help with the pain. I have since tossed the Excedrin, I have a prescription painkiller and new meds (which are not helping).
My doctor was well aware of my excessive use of Excedrin, she even knew that I chewed them. Apparently she was not too concerned until my od. I have used Excedrin in this manner for the 10 years that I have had clusters. I have always been concerned, but no one seemed to take me seriously. That has been the most frustrating thing about CH--no one, not even my doctors, can understand such pain.
Anyone who self-medicates needs to stop and get help. You have to make your doctors listen--I was never forceful enough. I am a single mom, I have so much to live for, and until this cycle of clusters and my Excedrin od, I had no idea I was gambling with my life. This horrible experience changed the course of my clusters forever. I have not felt well since I got out of the hospital, possibly due to the new meds, but who knows. I am just trying to learn more, take better care of myself and heal emotionally and physically from an agonizing cylce of clusters. My search for greater understanding has led me to you, and for that I am thankful.
God bless you all!
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LeLimey
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Re: Wow, I am not alone after all!
« Reply #1 on: Apr 28th, 2006, 4:37am » |
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Hi Addison
Welcome, I'm sorry you have had to come and find us but I'm very glad you did.
We've probably all done the OTC meds step and like you, we've all found we can eat our own bodyweight in them and they won't work!
The reason is they act on pain in a different way to that which is needed for CH.
In a hit the blood vessels in your brain expand by up to ten times their normal size which is what causes the excruciating pain (VERY potted version!) What we need are drugs which will constrict these blood vessels and thus reduce the pain. The normal abortives for CH are triptans, mainly imitrex and zomig, and Oxygen.
You need to be aware that with triptans the constricting effect is felt throughout your body, not just your head so if you have any heart issues you may not be able to use these. O2 also constricts blood vessels but does only work on your noggin (another technical term!) so is kinder to your body and every bit as effective in my experience.
How long do your cycles usually last and how often do they come?
There is alot of help we can offer but if you can gve us a bit more info and also tell us what you've just been prescribed we have a base to start from.
Looking forward to hearing more from you!
Helen
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BobG
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Re: Wow, I am not alone after all!
« Reply #2 on: Apr 28th, 2006, 4:51am » |
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Hello addison. Welcome to the board. We have a bunch of Lady Texans here (and a few that the word lady is a little questionable). But, God bless all of them.
Good advice from Helen. Please stay away from the pain killers. They'll only make things worse. You didn't say what the new meds are, abortives or preventatives?, verapamil?, imitrex?, maxalt?, prednizone?.
Please let us know. Someone is here almost all the time to help you get through.
Look under the buttons on the left side of your screen, especially the 'oxygen info'.
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Guiseppi
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Re: Wow, I am not alone after all!
« Reply #3 on: Apr 28th, 2006, 10:44am » |
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I used to chew aspirin like candy too! The feeling of grinding them on the teeth that were on the same side of the headache seemed to bring a little relief. When Jonny showed me the pictur of the trimegial nerve....(I'm sure that's badly mis spelled)...the teeth thing made a lot more sense.
What's already written is important to know. They don't have any one pill that'll make the hurt go away. And it seems everyone responds a little differently. When I go on cycle I take prednisone for about 10 days while I'm also taking lithium. After 10 days I wean offf the prednisone and stay on the lithium. This blocks about 80% of the headaches. For the ones that break through I take oral cafergot and breathe pure oxygen. I occassionally use imitrex injectables but only if I'm caught away from my oxygen.
You'll find everyone has a slightly different twist on what works for them, hope you find relief and welcome to our house!
Guiseppi
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addison
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Re: Wow, I am not alone after all!
« Reply #4 on: Apr 28th, 2006, 10:52am » |
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Hi Helen,
Thank you so much for the information. You would be surprised at how ignorant I am about clusters, even after suffering from them for 10 years.
I get mine once a year, usually in the late spring or early summer. A blessing for me, as I have been a teacher the past 10 years, and am now in grad school full time. They came on early this year. They typically last 6 weeks to 2 months--another blessing I see after reading other testimonials!
I have a nuero for the first time and was so excited to finally be with a "head doctor." My last doctor was internal medicine, he saved me, and I worship the man. He had encouraged me to get in with a nuero for some time, but I hated to leave him. I am now in a new city, so I had no choice. My new doctor put me on prednisone first. I had been taking it for two weeks before my visit to the ER. Following the hospital visit she gave me another 30 day "weaning dose," 60 mg/5days down to 10 mg 5 days. After a little more than a week following the hospital visit I called her, told her that prednisone was not working, was wreaking havoc on my body, and that I was going to wean off early. She agreed, so my last prednisone was taken maybe three days ago. She also has me on 40 mg of Varapamil/day. I have a scrip for phenergan, to help with nausea/vomiting, but I do not take this. Lastly, she prescribed Lortab for pain, 150 pills at 10mg/500mg. These have helped so much.
I called my dr. a couple of days ago and asked if I could try oxygen. She told me to pick up the prescription today. I hear that O2 is very expensive, so I will be calling around to see what I can find. That is it.
Since going off the prednisone, and no longer taking excedrin, I feel a little better with each passing day. I still have long, excruciating clusters nightly, but Lortab helps and I am careful about the amount I take--The most was 3 lortab over a 3 hour period. I take them in 1/2 doses at a time over the length of the cluster. I would prefer to take as few meds as possible, they make me feel so yucky. I just want to have a normal life. The weather is so beautiful, but I cannot muster the energy to get out unless I have to. I am too young to feel so old! I'm afraid that I might have damaged my health permanently. Much of feeling bad probably has a lot to do with the depression I go through when I am in a cycle of clusters. I want to treat my clusters correctly and safely. I just want to feel good again.
Thank you so much for your response. I look forward to learning more from you, and about you. God bless you!
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LeLimey
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Re: Wow, I am not alone after all!
« Reply #5 on: Apr 28th, 2006, 11:06am » |
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Hello again Addison!
We were all ignorant about CH when we came here, what I've learned I've learned here, from others and from sharing our experiences and you will too. Knowledge is power and knowing that whilst it hurts like nothing on earth, it won't kill you is actually a real boost.
Pred is usually used as a taper whilst you ramp up on a preventative such as verapamil. The trouble with pred is it will block CH but you can only take it for a short time and when you stop.. wallop.. back it comes. The idea of using it while you build up on verap is that it holds the beast at bay while you are waiting for the verap to kick in.
Verapamil is a med for high BP and one of the important things to know with it is that you must both increase AND decrease the dose slowly, its not an overnight thing okay?! You should also have an ECG on commencing verap and at every increase of dosage. The majority of people find it takes around 480mg to start being effective but there are people who get by on a lower dose and also a vastly higher dose.. you have to find what level works for you yourself as we are all quite different in that respect.
O2 is brilliant, its my first choice every time and I can't tell you how good it is.. you'll see! It does need to be at a high flow rate to be effective (usually 15LPM although some can tweak that) and it does need to be with a NON rebreather mask. I use a clustermasx (www.clustermasx.com) and I can abort a hit in as little as 5-7 minutes. Its just literally changed my life and you'll have to forgive me (and everyone else here!) evangelising about it!
I'm not familiar with Lortab, we quite often have different drug names here in the UK to the ones you use but someone will be along in a bit to advise you further on that.
You might want to read up about melatonin for relief at nights and given that you aren't a "meds" person you might like to read up about kudzu on the meds board and other alternative treatments at www.clusterbusters.com
We will help you all we can, what ever route you take to defeating your beast you can be assured that we'll help and support you all the way 
Ask all the questions you like here or on the ch specific and meds boards and feel free to come and join in the giggles, silliness and squabbling on the general board. This is a family, you're now a member so listen to Aunte Helen and join the fun!
You're going to like it here
Helen
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Linda_Howell
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Re: Wow, I am not alone after all!
« Reply #6 on: Apr 28th, 2006, 12:54pm » |
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Addison, if I may add something here. ??
Oxygen is NOT expensive. When you start looking around at what the drugs we take cost...02 is the cheapest and safest way to abort an attack.
Let us know if you need help in finding how to get it. Having a prescription is the hardest part, as some Dr.s are reluctant to give it to their patients due to complete lack of education on the subject. 
You already have that so you're 1/2 way there.
Your comment about how this site brought tears to your eyes and how you thought you were alone in this...is very familiar. After typing CLUSTER HEADACHES in a search engine and coming up with this site most of us sat in front of our monitors and cryed like babies. 
You are with family now.
Linda
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Ghost
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Re: Wow, I am not alone after all!
« Reply #7 on: Apr 28th, 2006, 4:51pm » |
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Hey there Addison welcome to the zoo.
Seriously though listen good to these people here they are on top of it all. Best brain trust money can buy and its free! Hope you feel relief soon and stay strong.
Mike
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***WARNING*** Oxygen will rust your pipes!
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RichardN
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Re: Wow, I am not alone after all!
« Reply #8 on: Apr 29th, 2006, 12:28am » |
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Hi Addison and Welcome Home
I too teared up when my wife found this board 2/02.
Didn't do the Exedrin, but I was downing 8-10 Goodies Powders a day . . . thought they were working as most would go away within 20-30 min. Doc had me on Vioxx and then Attenelol (sp?) . . . . they just kept getting worse and more frequent.
Here I found a "name-for-the-pain" and the info/tools to battle the beast.
Make sure you get a 15 lpm regulator and a non-rebreather mask (the one with the bag). I can't take triptans (like Imitrex) due to arterie blockage and high cholesterol . . . so 02 is my only abortive . . . can kill him in minutes if used early-on in the attack. Night hits take longer as he has a better hold on you before you wake.
Verapamil worked for me also. Didn't have my first PF day til I hit 240 mg (had 3 attacks that night, but had the 02 to kill them). Got as high as 360 mg. Has already been mentioned above . . . many take considerably more and often in combination with other drugs.
Water X 3 . . . see link to left. I am convinced this has been beneficial to me . . . and many others.
You have much to read and many questions to ask . . . . fire away. There's more CH info here than you'll find anywhere and a great bunch of foks who truly know your pain. You're not alone anymore.
Be Safe, PFDANs
Richard
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alchemy
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Re: Wow, I am not alone after all!
« Reply #9 on: Apr 29th, 2006, 1:07am » |
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hey addison, welcome to our family. your not alone anymore. take the advise you've been given and read all you can.
jim
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Richr8
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Re: Wow, I am not alone after all!
« Reply #10 on: May 1st, 2006, 12:05pm » |
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Welcome Addison, I'm glad to hear I'm not the only one who cried when they found this place, and it only gets better. I just thought I would add my two cents to all of the great advice you have gotten so far.
on Apr 28th, 2006, 10:52am, addison wrote:My new doctor put me on prednisone first. I had been taking it for two weeks before my visit to the ER. Following the hospital visit she gave me another 30 day "weaning dose," 60 mg/5days down to 10 mg 5 days.[/b]
Prednisone is the magic bullet for me. 60mgs at 5-10 days has broken my cycle in the last three years. During that time I ramp up to 480mg od Verapamil, then it's lust a matter of weaning off the pred. and recovering my physical and mental health. The pred. does take quite a toll usually accompanied by a large dose of sleep deprivation.
I called my dr. a couple of days ago and asked if I could try oxygen. She told me to pick up the prescription today. I hear that O2 is very expensive, so I will be calling around to see what I can find. That is it.
Oxygen is my primary abortive. At the right flow rate (15 lpm+) and with the right mask ( non-rebreather, clustermask) it can be a real lifesaver. Put all of your energy to getting this set-up as soon as possible.
I am too young to feel so old! I'm afraid that I might have damaged my health permanently. Much of feeling bad probably has a lot to do with the depression I go through when I am in a cycle of clusters
One thing nice about clusters is that they will put you through hell from a pain standpoint, but will leave you in great condition to suffer again next year. Of course, long bouts with prednisone are not recommended, but you can certainly receovr from the effects of short term use. I anm going to look into some of the alternative solutions discussed on this site for my cycle next year in an attmept to get away from the prednisone permanently |
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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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tanner
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Re: Wow, I am not alone after all!
« Reply #11 on: May 1st, 2006, 5:17pm » |
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Hey Addison, welcome aboard. I won't add anything to the excellent advice you have gotten already except to say in reference to BobG's mention of the Texas ladies you might find that a little occasional good old fashioned sucking up is probably a good idea 
..ahem.... the same might be true of the Canadian girls 
you know that way you have north and south covered...tim
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Charlie
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Re: Wow, I am not alone after all!
« Reply #12 on: May 1st, 2006, 7:27pm » |
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Welcome to the fold Addison but sorry you have to deal with this horror.
Lots of good advice here and some fun as well.
I was a mess when I first read the guest book. I had no idea that there are so many of us.
Here is something that worked for me:
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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Drew_Va
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Re: Wow, I am not alone after all!
« Reply #13 on: May 4th, 2006, 9:31pm » |
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Addison,
As a newbie here also I know exactly how you felt when you found this place. I have been spending a great deal of time surfing here both at home and from work (there goes my productivity) becuase it is comforting to read and share thoughts with those who KNOW what we go through. God Bless you and yours and just keep on fighting the good fight!
Drew
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| « Last Edit: May 4th, 2006, 9:32pm by Drew_Va » |
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