Hi, I'm a 29-year-old female. I started taking Ambien in November 2010. I began having blurry vision, tunnel vision, nausea, pressure in my head, and pain behind my left eye. I had MRIs, CT scans, saw a neurologist and an optometrist. The optometrist advised me to discontinue ambien because the blurry vision could be a side effect from it. The neurologist started me on Frova, which took the pressure feeling away. I discontinued ambien and the nauseous blurry vision went away and I was left with the pain behind my left eye. I still have mild blurry vision, which the optometrist told me I have astigmatism and I got glasses. The neurologist started me on Medrol dose pack, which finally took the pain away from my left eye. A couple months later it came back...$1000s of dollars later, I still have the pain behind my left eye. I believe that the side effects from the ambien are the reason I was diagnosed with migraine headaches and never cluster headaches. I was going to see an ophthomologist or an ENT for sinus problems, but thankfully I found cluster headaches! I will get tension in my shoulder that goes into my neck and back of head. The only thing that helps a little bit for that is when my husband puts his elbow in a knot beside my shoulderblade, but that hurts as well. That pain is better than the pain going up my neck and into my head. I never understood how the pain could disappear and then come back.... thank God I have finally figured it out. My question now is... should I go back to the neurologist or should I self treat? I have been to the point that I have wanted to blow my brains out or rip my eyeball out. Some days are better than others. So happy to finally know what it is and know that it is not a tumor that was missed or anything else like that. Looking forward to learning from everyone and would love to hear your advice! :D

Your best bet is to find a headache specialist neurologist. Garden variety neuros know very little about headache types, it's very much a specialty practice. Interview the neuros office, find out if they are currently treating anyone with CH. Make sure they are aware oxygen should be your FIRST LINE abortive treatment. If they know about high flow oxygen, they are probably up to date on CH.

It sure sounds like CH to me, the pressure, the knot on the shoulder, (very common), but there are other headache types that can mimic CH so the headache specialist neuro is still your best bet.

Welcome to the board, glad you found our crazy little community.

Joe

NO! self-treatment, please. As your experience suggests, this is not your ordinary aspirin headache. Joe is right: this is a complex area of medicine in which many docs have little effective training/experience. If at all possible, find a specialist.
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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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE 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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There are many condtions which mimic Cluster and it's important to sort the wheat-from-the-chaff. But start by learning some basics.
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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Explore: the OUCH site, left buttons, and.....


A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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Any doc you finally see should be working from this range of meds in treating you. Print the PDF file, below.
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As you begin to grasp the complexity of what you are experiencing many questions will come to mind. Keep us informed and ask, ask. Finally (for today <bg>),

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
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.

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Hi Excrucee,
 

ExcruciatingOrbit wrote on Sep 23^rd, 2011 at 11:52pm:

My question now is... should I go back to the neurologist or should I self treat?

My take on this is that yep you should see a headache specialist to confirm your self diagnosis, then in large part you should actually self treat, or at least take full charge of your own treatment plan. Trust a doctor's treatment plan about half as far as you can throw that doctor.

An O2 prescription would be mighty nifty, and I can't guarantee you I would turn down drugs such as imitrex injections if I was in the throes of a bad episode, but personally after 30+ years of episodic CH I'm currently finding the non toxic preventative treatments to be more effective, and so are many others.

My current holy trinity:

1) High flow 100% O2 for aborts.

2) The D3 regimen for prevention

3) The cluster busters approach for prevention.

Here's some D3 for CH info:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

And some clusterbusters info:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Yes, do find a good headache specialist. In the meantime, take the CH quiz at the left, along with its results, with you to whatever visit you obtain. Also, keep a headache diary. Include things like when the pain hit, describe the character of the pain, its locale, the time it began and ended, anything you can describe as a precursor, and anything you took or did to lessen the pain and how effective it was. Chances are this would be a first step anyway with a headache specialist so beginning now could be a time saver for you. Blessings. lance