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Topic: Can't get a Neuro Appt (Read 339 times) |
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ami-manning
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Can't get a Neuro Appt
« on: Jan 19th, 2005, 10:16am » |
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I was on here about a year ago when I was having clusters severely. I since went through a dry period and now they are back with a vengeance. It's only been about a week and I'm trying to push through work, etc. I cannot get a neuro appt to save my life -- not anything within a month's timeframe. I have no drugs and my regular doctor will no longer prescribe narcotics at all due to my cluster diagnosis. I ordered xanax online and it's not gotten here yet. I need something to get me through the day. I'm in pain -- but at times, I feel like the "foggy" feeling is worse than the pain -- I can't remember things, I can't focus, I want to only look down, head feels "heavy" -- I get depressed b/c I can't remember what it's like to feel normal. tHere are about two hours every morning where there's no pain -- but it seems to keep coming back at around 8:30 or 9am since last Thursday. Any suggestions? I am feeling so down and at a low point. I don't think any of my friends or family understand -- and that contributes to this feeling of isolation. I don't want to tell people at work -- b/c again -- they don't get it either. I feel as if people think I make this stuff up or something. It's a very lonely place to be right now -- and in pain on top of that. - Ami
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ami manning
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nani
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Re: Can't get a Neuro Appt
« Reply #1 on: Jan 19th, 2005, 11:57am » |
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Hi Ami...welcome. Narcotics aren't used to treat clusters. Look around the boards here for preventative and abortive med recommendations. I use verapamil, lithium and Neurontin as prevents and since I can't use the triptan drugs (like Imitrex) I can only use oxygen to abort headaches. A GP can prescribe those meds.
Pain free wishes to you, nani
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| « Last Edit: Jan 19th, 2005, 12:09pm by nani » |
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ami-manning
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Re: Can't get a Neuro Appt
« Reply #2 on: Jan 19th, 2005, 2:11pm » |
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Thanks for your message. I understand that narcotics are not used for Clusters. I've had them now for over three years. However, the meds I was put on each time did not work or I suffered horrid side effects. And now, finding myself here again - and unable to get an appt inside of a month -- I have no other options for pain. Just trying to get by. -- But thanks -- I've been on neurontin -- didn't work -- topamax -- immitrex -- all the migraine meds - none worked.
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ami manning
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nani
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Re: Can't get a Neuro Appt
« Reply #3 on: Jan 19th, 2005, 2:16pm » |
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Have you tried verapamil and lithium? How about oxygen to abort? All that info is on the boards here...look it over and talk to your GP.
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Langa
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Re: Can't get a Neuro Appt
« Reply #4 on: Jan 19th, 2005, 2:20pm » |
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If you want to try the oxygen to see if it aborts your ha's, try the welders oxygen (no script needed). AT least until you can get to see your doc.
Good luck
Langa
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ami-manning
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Re: Can't get a Neuro Appt
« Reply #5 on: Jan 19th, 2005, 2:22pm » |
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No on Lithium. I tried Verapimil -- didn't work. And no on oxygen. I guess my problem is I need to just try and get into another neuro -- since mine can't see me for a month -- so I can at least get on something. I pretty much get the routine of drugs and trial and error.. but I'm frustrated b/c I can't get into a doctor. And I'm in pain. I'm sorry if I sound like I'm whining -- I'm just in a painful cycle of frustration.. didn't mean to sound ingrateeful at all. I very much am.
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ami manning
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ami-manning
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Re: Can't get a Neuro Appt
« Reply #6 on: Jan 19th, 2005, 2:23pm » |
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how do you get that oxygen? and is it costly?
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ami manning
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nani
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Re: Can't get a Neuro Appt
« Reply #7 on: Jan 19th, 2005, 2:26pm » |
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No, I understand. It's very frustrating. I'm not sure what else a neuro could offer, at first at least. There are other, more radical treatment options like the Histimine Drip, DHE treatment and even occipital nerve block. There is also the "alternative" treatment. My guess is a neuro would want to keep trying the "typical" meds first. I hope you get some answers. Pain free wishes, nani
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ami-manning
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Re: Can't get a Neuro Appt
« Reply #8 on: Jan 19th, 2005, 2:33pm » |
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hey -- thanks for your insight. much appreciated. i'll just grin and bear it until i can get back in to the doc 
-Ami
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ami manning
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nani
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Re: Can't get a Neuro Appt
« Reply #9 on: Jan 19th, 2005, 2:40pm » |
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Nobody says you have to grin...unfortunately...you do have to bear it. nani
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lionsound
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Re: Can't get a Neuro Appt
« Reply #10 on: Jan 19th, 2005, 10:53pm » |
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Ami,
I'm so sorry you are in so much pain and I understand your lonliness. 
I have a few suggestions for you to try...
first for yourself: have you tried puttiing ice on your head while in pain?That sometimes helps me. It doen't make it go away,but makes me feel better. Or going from a hot to a cold shower?
and second about the doc: ask the places you are calling to put you an a cancellation list. Don't be afraid to be aggressive! You are important! Call your primary doc and explain that you need to be seen by him/her so that they can SEE and LISTEN in person to what you need. And when you speak to a neuro office explain clearly how you are feeling. Write it down before you go and bring it with you to either place. Better yet, print out your posts and this thread. They'll get the idea quick.
Please be well and let us know how you are doing,
lionsound
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Bob_Johnson
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Re: Can't get a Neuro Appt
« Reply #11 on: Jan 20th, 2005, 11:09am » |
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Print this out and take to either the neuro's or your primary care doc's office. Ask for sample bottle. You will know with 1-2 doses whether it works for you. If yes, then you have bought some time until you see the neuro.
----------------------
1: Headache 2001 Sep;41( :813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
------------------------------------------------------------------------ --------
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Bob Johnson
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mrbonecrusher
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Re: Can't get a Neuro Appt
« Reply #12 on: Jan 22nd, 2005, 2:21am » |
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In a real tight spot myself Dr wise. When it gets bad I've found a couple of good hard smacks to my head helps. Luckily my HA are mostly on the RH side and I'm RH. That way the full whack gets planted. The meds the Drs push are almost as bad as the HA. Zonegran is making me feel like I'm 21 again and as hot tempered as I was back then it ain't a good thing. Good luck with the HA.
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Mike in Idaho
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RichardN
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Re: Can't get a Neuro Appt
« Reply #13 on: Jan 22nd, 2005, 2:50am » |
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How often do you get hit?
If they are regular enough, and tends to hit you arround the same time everyday (if during the day, and not night hits), I'd be tempted to copy the 02 info, plus the mayo info re CH, go to your neuro and ask to speak to his nurse . . . . request a script for the 02 and give her the info to show him . . . and be willing to wait. My bet is that if you get hit in the waiting room, they're not going to send you away because you don't have an appointment . . . . not with other patients observing.
And . . . . he/she can SEE why waiting weeks is out of the question.
My 
Richard
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BarbaraD
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Re: Can't get a Neuro Appt
« Reply #14 on: Jan 24th, 2005, 5:57am » |
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Another way is to get your primary doc to put you in the hospital and call in your neuro as a consultant. That cuts thru the red tape.
Or go to ER and tell them you need a neuro consult for Clusters.
DHE treatment can be given in the ER -- that usually works. But you actually need several treatments to break a cycle.
having a headache in the neuro's office is a sure fire way of getting attention IMMEDIATELY.
Good luck....
Hugs BD
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