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Topic: Medication Two-Step - Around we Go (Read 345 times) |
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kimh
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Medication Two-Step - Around we Go
« on: Jul 30th, 2004, 9:36am » |
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I have been in cycle a little over two weeks now. Finally got insurance and could afford to go to the doc. Had appt Wednesday with new Internist.
She was very nice. Asked me what neuro had me on last cycle and prescribed same. Neuro is in Manhattan and i'm seeing him Aug 7.
Current script: 300 mg Neurontin 3x day for preventative
maxalt mlt10 dissolving pill for abortive
*NOTE - Brought oxygen info with me - she balked at writing script for that - told me better off (for insurance purposes?) having neuro write it. She was NOT motivated at all to write a script for oxygen!
Wednesday evening around 5pm the intense attack hits on schedule. I popped a maxalt mlt10 (this happened while standing in the pharmacy - pharmacist gave me one right there). Maxalt worked and attack was successfully aborted.
Wednesday nite: took 6mg Melatonin - no attacks, slept through nite.
Thursday - around 5am wakened with a hit - pop the maxalt, swig some coffee - attack is already in full swing - abortive ineffective. Attack reaches kip 9, lasts an hour.
Thursday 3:00 pm - take 300mg neurontin as prescribed by doc to "clobber" the bad 5pm hit...
As the afternoon progresses hard shadows for which i apply ice to my neck and left side of face and head with little relief. Shadows increase and hits start coming. Back to back relentless. Maxalt completely ineffective (took one in afternoon and one in evening) Attacks subside back down to hard shadows and continue throughout evening - finally subsided at around 10pm. Afraid to take the melatonin now. Afraid to take anything to tell you the truth...
I am concerned as to why that happened. Was it the meds? Is it just the cycle ramping? Historically i hit a peak where the headaches go "haywire" but usually longer into my cycle. I'm stumped.
**NOTE** Also spoke to neurologist in Manhattan over telephone. He was NOT INTERESTED in the oxygen either!!!!!!!!!!!!!!!!!Very dismissive. Pissing me AWF! 
I have a feeling that if i want to get that oxygen i'm gonna have to go cybil on the doc....and i am not up for the confrontation shit.
What i would appreciate is any feedback from you guys about the attacks going out of control like that so perfectly in sinc with taking meds. Prior to Wednesday I was getting morning afternoon hits at manageable levels with one severe hit at 5pm. After the meds, KABLAM!
This has happened to me b4 in the past and is why i am so freaking leary of meds....i keep trying to tell myself to be patient and do what doc says blahblahblah, but whenever i do, it seems i end up in more pain than started with.
Has anyone here experienced worsening cycles directly following starting the meds....????
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| « Last Edit: Jul 30th, 2004, 9:40am by kimh » |
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Samantha_Smith
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Re: Medication Two-Step - Around we Go
« Reply #1 on: Jul 30th, 2004, 11:42am » |
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It might be the cycle itself beginning to ramp up shorter into th cycle. Cycles can change in nature over time. But you may be right in saying the meds caused the CH to worsen. Its the chicken and egg theory.
How about Imitrex injections and a Prednisone taper with Veraprimil as a preventative because it sounds like those other meds you're on right now aren't working too well? Imitrex, Prednisone and Veraprimil is a fairly common and effective combo around here. Can you find another neuro/GP who would be willing to try O2?
If you're leary of meds get off of them all together--that's a legit choice also.
Hope all works out. PFDAN's Samantha
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Roxy
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Re: Medication Two-Step - Around we Go
« Reply #2 on: Jul 30th, 2004, 12:41pm » |
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kim,
I don't know anything about episodic cycles, I can only tell you about my experiences. Most meds seem to ramp my head up, melatonin sends me into a dimension I have never known. Maxalt might as well be a placebo, won't even kill a hangover.
Is there anyway you could get access to welding 02? Sometimes the 02 can work in conjuction with the meds.
My family doctor won't prescribe 02, but your neuro shouldn't even hesitate at writing the script. Is there anyway you can get into another neuro?
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kimh
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Re: Medication Two-Step - Around we Go
« Reply #3 on: Jul 30th, 2004, 1:09pm » |
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Appreciate the replies.
To date, oxygen prescribed as per this site is pretty much the only option i have not tried. I am going to pursue it until i HAVE it and see how it works for me.
Did not take meds today. Did not take the melatonin last nite. I FINALLY am down to mild shadows accompanied by a stiff/sore ganglion.
There are no easy answers, i know. Are the symptoms directly related to the meds. After 30 years FUCK IF I KNOW 
Kim - taking it one day at a time.
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FZfan
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Re: Medication Two-Step - Around we Go
« Reply #4 on: Jul 30th, 2004, 1:39pm » |
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Any neuro, or doctor for that matter, that hesitates or refuses to write scripts for o2 is demonstrating their lack of knowledge relative to this disease. Either discard that doctor and get a new one, or visit the local welding shop and begin treating yourself.
kimh, your story sounds somewhat similar to mine in that I tried all kinds of meds over the years and they always seemed to be ineffective or make things worse. Once I started using o2 properly, I became convinced that I didn't need any meds at all, just o2 to abort the attacks.
That's how well o2 works for me. I realize it doesn't work as well for some, but for a doctor to not even try it to see if it will be effective seems just unconscionable to me.
Maybe they are afraid it will work so well for you, that you will no longer need their services.
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kimh
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Re: Medication Two-Step - Around we Go
« Reply #5 on: Jul 30th, 2004, 2:48pm » |
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Thursday was a day that "will go down in infamy" so to speak....and as always with clusters, an ongoing personal education-through-experience. I was in no condition to be "firm" with any doc yesterday. Just in way too much pain and trying desperately to hold myself from completely going over the edge.
Today, it's better. It ain't over till it's over, but i am feeling better and stronger both physically and emotionally.
Decision: No more neurontin. No more melatonin. No more dicking around with "preventative" meds. I'm calling neuro and TELLING him (politely but firmly) that unless he is willing to help me obtain oxygen as originally requested, i no longer need his services.
Now that i've got that cleared up just one more thing i want to add:
My experiences with preventative medications reflects my experiences ALONE and is in no way intended to sway others in one direction or another. It's just me - one person- sharing my own experiences. 
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| « Last Edit: Jul 30th, 2004, 2:49pm by kimh » |
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Superpain
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Re: Medication Two-Step - Around we Go
« Reply #6 on: Jul 30th, 2004, 2:53pm » |
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Good decision regarding the O2 and the neuro.
For about $200 you could have O2 today from the welding shop...
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Chris
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kimh
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Re: Medication Two-Step - Around we Go
« Reply #7 on: Jul 30th, 2004, 3:00pm » |
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Superpain,
I know. Thing is.............i'm poor
If I keep getting the run-around, i might break down and borrow the money for weldors.
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Superpain
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Re: Medication Two-Step - Around we Go
« Reply #8 on: Jul 30th, 2004, 3:06pm » |
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on Jul 30th, 2004, 3:00pm, kimh wrote:Superpain,
I know. Thing is.............i'm poor
If I keep getting the run-around, i might break down and borrow the money for weldors.
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Do what ever you have to do... It's worth it!
Some places lease tanks too. The $200 figure includes buying everything.
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Chris
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Samantha_Smith
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Re: Medication Two-Step - Around we Go
« Reply #9 on: Jul 30th, 2004, 5:08pm » |
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Kim--
Do you have a friend or know someone who owns/works at an auto body repair shop--they often times have (welding) O2..... Just trying to brain storm up ideas to get you cheap O2 incase the neuro doesn't work out or come to his senses. Hang in there. Keep us posted. Samantha
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IndianaJohn
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Re: Medication Two-Step - Around we Go
« Reply #10 on: Jul 30th, 2004, 5:52pm » |
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Best of luck Kim.
I know that some tanks come in various sizes. It might be worth at least phone call to a compressed gas supply company to see what they can supply at what cost. I think the expensive part is the regulator which you may be able to shop around for. They should be in the phone book.
praying for ya!
John
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Did my brains fall out or is this headache over?
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kimh
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Re: Medication Two-Step - Around we Go
« Reply #11 on: Jul 30th, 2004, 6:35pm » |
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This thread is not one day old yet, and the oxygen posts are younger than that...
Within hours (if that) a clusterbud was at my door with full tank and a brand new mask.
I am sitting here still taking in the magnitude of that. I am crying. 25 years alone. Three years ago when I first discovered ch.com i had never ever laid eyes on another sole even remotely familiar with cluster headaches. Three years ago i formed friendships that have only deepened over time. In the last weeks, i've met Eric who lives up the road from me and who is also battling the beast. I met a brother who will be in my heart forever...
Two weeks ago i began for the umpteenth time my personal journey into hell. Out of that hellhole came an incredible blessing.
Thank you everyone for being here. Thank you my friends who are a lifelong part of me.
Thank you Eric, words seem pale on the outside. Inside...that's the incredible celebration.
I read a post today about Struggle....We are all that butterfly.
Lotsa love
ole stinky
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| « Last Edit: Jul 30th, 2004, 6:35pm by kimh » |
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Superpain
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Re: Medication Two-Step - Around we Go
« Reply #12 on: Jul 30th, 2004, 7:38pm » |
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Kick ass...
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Chris
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Redd
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Re: Medication Two-Step - Around we Go
« Reply #13 on: Jul 30th, 2004, 8:13pm » |
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Ummm
Have I told anyone recently....I Love This Family!!!!
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E-Double
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Re: Medication Two-Step - Around we Go
« Reply #14 on: Jul 31st, 2004, 12:25am » |
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on Jul 30th, 2004, 6:35pm, kimh wrote: In the last weeks, i've met Eric who lives up the road from me and who is also battling the beast. I met a brother who will be in my heart forever...
Thank you everyone for being here. Thank you my friends who are a lifelong part of me.
Thank you Eric, words seem pale on the outside. Inside...that's the incredible celebration.
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My pleasure sister!!! and you too are emblazened on my heart!
Now go suck down some sweet O2!!!
I hope it works for ya. Keep trying and don't hesitate to call
Hugs,
Eric
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FZfan
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Re: Medication Two-Step - Around we Go
« Reply #15 on: Jul 31st, 2004, 9:37am » |
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OUTSTANDING!! I really hope it works for you. Please let us know.
Quite often it seems we help each other much more than the so-called medical community.
For any newbies reading this post let this be a lesson - do NOT be shy about posting your treatment problems here.
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kimh
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Update
« Reply #16 on: Aug 2nd, 2004, 11:54am » |
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Spoke to neuro today. We actually had a real life "discussion". He listened to what i had to say. He is willing to work with me on the o2 (the ONE thing i was trying to get from the start).
New script: Verapimil (gotta go pik it up at pharmacy). The dose is on the small side because i have a history of low blood pressure. 120 mg pills (extended release), take 1, see how works, etc. Work up to three x day if no side effects.
Relieved to be able to get that o2!
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| « Last Edit: Aug 2nd, 2004, 4:46pm by kimh » |
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E-Double
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Re: Medication Two-Step - Around we Go
« Reply #17 on: Aug 2nd, 2004, 1:18pm » |
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Quote:| Relieved to be able to get that o2! |
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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