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I'm afraid to eat now. (Read 697 times)
vaphRobert
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I'm afraid to eat now.
Aug 1st, 2012 at 8:04am
 
I've had these for 29 years now.  I have been on Verapamil for about 15 years.  Cant take triptans.  Five years ago I went from episodic to chronic.  Been having 5's and 6's since then several times a day.  End of June this year they started getting really bad again.  tens daily.  No relief until one ER gave me Dihydroergotamine.  It ended the CH within seconds.  Went to my normal ER a few days later for another ten that wouldnt go away(the Veteran's hospital) and they don't feel safe giving me that stuff.  No idea why but it's like I'm back in a cycle from hell now.  I hope this ends and isn't what my life is going to be from now on.  Has anyone else gone chronic then experienced a cycle?  Did you then go back to episodic? 
Worst part is I'm afraid to eat now.  I know some triggers but triggers change even in a cycle.  If I eat anything and get an attack within about four hours I wont eat anything like that again.  I'm now out of things I feel safe eating for fear of laying in bed screaming for three hours.  Now I also fear hunger is going to cause them.  Opiods make them worse and the jury is still out on if Fioricet is doing anything.  I'd at least like something to calm me down but have no idea what might do that without increasing the pain. Ran out of Verapamil 3 days ago.  Last two days have been hell.  Was never convinced the Verapamil helped but now am.  Any advice on food??I am weak from hunger.   
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Bob Johnson
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Re: I'm afraid to eat now.
Reply #1 - Aug 1st, 2012 at 8:21am
 
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
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Essential that you get yourself to a headache specialist! The ER routine is one of the worst places to get the systematic treatment plan you need. Any narcotic based treatment not only is not the most effective but induces long term use problems--and we must be on meds which can be used for years.

Assume you can get a referral from the VA but if this isn't so....

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.


2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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Chronic Cluster takes some special skills to manage, making the need for a skilled doc important. As you see, this is not a simple disorder.
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This is hardly the whole picture but a quick summary.
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Curr Treat Options Neurol. 2011 Feb;13(1):56-70.
MANAGEMENT OF CHRONIC CLUSTER HEADACHE.
Leone M, Franzini A, Proietti Cecchini A, Mea E, Broggi G, Bussone G.
SourcePain Neuromodulation Unit, Department of Neurology, Headache Center, Carlo Besta Neurological Institute Foundation, Via Celoria 11, 20133, Milano, Italy, leone@istituto-besta.it.

Abstract
OPINION STATEMENT: Primary cluster headache (CH) is an excruciatingly severe pain condition. Several pharmacologic agents are available to treat chronic CH, but few double-blind, randomized clinical trials have been conducted on these agents in recent years, and the quality of the evidence supporting their use is often low, particularly for preventive agents. We recommend sumatriptan or oxygen to abort ongoing headaches; the evidence available to support their use is good (Class I). Ergotamine also appears to be an effective abortive agent, on the basis of experience rather than trials. We consider verapamil and lithium to be first-line preventives for chronic CH, although the trial evidence is at best Class II. Steroids are clearly the most effective and quick-acting preventive agents for chronic CH, but long-term steroid use carries a risk of several severe adverse effects. We therefore recommend steroids only if verapamil, lithium, and other preventive agents are ineffective. In rare cases, patients experience multiple daily cluster headaches for years and are also refractory to all medications. These patients almost always develop severe adverse effects from chronic steroid use. Such patients should be considered for neurostimulation. Occipital nerve stimulation is the newest and least invasive neurostimulation technique and should be tried first; the evidence supporting its use is encouraging. Hypothalamic stimulation is more invasive and can be performed only in specialist neurosurgical centers. Published experience suggests that about 60% of patients with chronic CH obtain long-term benefit with hypothalamic stimulation.

PMID:21107766[PubMed]
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Bob Johnson
 
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wimsey1
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Re: I'm afraid to eat now.
Reply #2 - Aug 1st, 2012 at 9:00am
 
There's so much going on in your post it's hard to know where to begin. Do you have a headache specialist you see, or are you just working through an ER? Who prescribed your verapamil and in what doses? DHE is a great abortive. You can get it in 3 ways: IV at the hospital, self injectable and nasal spray (Migranal). I have the spray. Also, yes, chronics can have cycles. I am chronic and have been for many years and still experience high chronic cycles and low chronic cycles. Give us some more info. God bless. lance
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