Hello all

Let me introduce myself. My name is Lars and I live in Seattle, Wa. I am 64 years old and am experiencing my second bout of cluster headaches. About 7 years ago, I was diagnosed with Horner’s syndrome and along with this came severe headaches involving my left eye. While in some cases it is possible to diagnose a cause, in mine, there was not. Working with a neurologist using Depakote  and then Lithium, they finally went away (just in time too as the Lithium gave me a tremor that was unwanted). I thought that that was that and had no inkling that they could reappear.

To bring you up to the present, my wife and I took a trip to  Vietnam in January and while there I began experiencing headaches behind my eyes every time I coughed during the time that I had a cold. The cold went away but the headaches remained. They continued at a low level til my return to Seattle in February.  As they had gone on for several weeks and I feared some tropical disease, I scheduled an appointment with my PCP. The night before the appointment I was awakened at 2:30am with a headache that was 6-7 on the scale around my left eye. This went on for about 2 hours. My PCP was very concerned and ordered an immediate MRI which was negative for other possibly more serious sources for the pain. These headaches have continued tho the times of onset have varied, sometimes to 4:00am and sometimes to 6:00am. During the last 3 weeks I have traveled for  work to the east  coast so some of that could be due to the time zone change. Sometimes the  attacked now has lasted 4hrs.

I am so glad to have found this website for the information and support that is offered. About 8 days ago I started the Vitamin D-3 regimen and it seemed to be helping until I flew home. Boy was that a set back. Last night was the first one in 4 nights w/o being awakened at 2:00am with a level 7 headache. Hope springs eternal. It is interesting that this time the way it has occurred is so different. While the overwhelming pain is around the left  eye, it has also occurred behind and around the right eye, the right eye brow, the right temple, the left  temple, the jaw, the left side of the face, and often bilaterally in the frontal area of my head.

Tomorrow I see both my PCP and the neurologist I saw last time. I will seek to get the blood test for my D-3 levels and hope that  tonight continues the trend if  one can call it that from last night. I will continue to check this site and use it to seek and give support. Thanks all

So if I understand correctly, you don't yet have a diagnosis of CHs? It's important to have a knowledgable doc on our side, especially since most neuros have no experience whatsoever with CH patients. Some of what you describe is germane but some of it is unusual to CHs. For example, the pain radiating along the trigeminal nerve from jaw to temple is common, but the bilateral nature is not. CHs tend (tend to be ipsilateral. Anway, the pain is real and I pray you have a good doc who is experienced in head pain and its relief. Let us know what you discover. God bless. lance

There are two sufferer recommended docs in the Seattle area, docs other CH'ers have used who are familiar with CH and how to treat it:

Seattle:
Dr. Sheena K. Aurora
Swedish Headache Center

Dr. Sylvia Lucas
Neurology Headache and Multiple Sclerosis Clinic at UWMC

If your doc is not familiar with current treatments on CH these might be an option. Wishing you some pain free time soon.

Joe

Note that Sheena Aurora is now at Stanford Medical Center...and Swedish has closed down (essentially) the the Headache part of Pain and Headache Clinic.

I have transferred to Dr Lily Jung Henson of Swedish at their Issaquah campus...quite remarkable Doc...and I highly recommend.

Note also it's really tough to get a timely appt at the UW clinic

Best,

Jon

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
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Onset of a new Cluster picture at you age changes the picture somewhat. Late onset may signal one of a number of disorders which mimic Cluster but which are not true headache disorders.

The diagnostic task in such situations demands a doc with deep knowledge and skills in headache, something often/usually lacking in primary care docs and general neurologists.

If at all possible, find a headache specialist.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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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And print out the following and drop on any doc you see. If he can't at least appreciate the potential, time to move on. If he's curious, might be a good sign for you.
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Link to: cluster-LIKE headache.
Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Thank you all for your thoughts and ideas. I am pursuing my neurologist, Dr. Rappaport as he successfully eliminated the last bouts of headaches that were very much like what is going on right now. I recognize that there are aspects of how this began that are atypical and I will follow up with Dr. Rappaport with a discussion of his thoughts as to possible alternatives and his experience in treating atypical cluster headaches. I do like the continuity of being treated by someone that has experience with me and with whom I have a connection

I particularly appreciated the provision of a couple of names of Docs with expertise with headache in Seattle. Given the lead time I believe I'll schedule an initial meeting. I want to keep my options open. The act of just putting this down, helps clarify what I want and need to do.

I continue to pour water thru my body and to do the Vitamin regimen. It is now day 8 and though the airline flight from DC.  to Seattle, triggered severe headaches at 2:30am for 3 days (kip 6-7), things seemed to be settling down. The last 2 night were the first ones since I'm back that allowed me a full nights sleep. Part of the problem is that I don't want to go to bed at night for fear of how I will be awakened. Today was one long bout of bursts at (level 4-5) that tho not frequent, went on for 8 hours. This is disheartening.

I have a question as to others experiences with CHs. Do your headaches come and go quickly. For example, mine come in a matter of 1-2 seconds and then subside in the same period of time. Sometimes they will start from a Kip 5-6 and go to an 8,  and other times it will start from a level 0-1 and go to a 2 or 3. The worst headaches are ones that  start at 5 and go to 8 and then back to 5 and continue this for 15 minutes to an 1 hour. My reference is post-op pain on my knee where the first  night I missed my dose of Oxycodone. That was a 10 and thank god I have not experienced that with this. The rest of the pattern for me is that there have been 1-2 of these each day and the rest of the day it stays at level 1 with excursions to 2-3 maybe 3-5x/hour.

My doc has started me on Indomethacin to try and break the cycle. He wanted to include Lithium but in using it last time it produced tremors that we would like to avoid. I also have allergies other possible medications. Finally he was very supportive of the vitamin regimen and order a blood level so we'll see what is what with that.

Bob, you mentioned some other disorders that mimic CHs and it seemed that you intended to include a link but I don't see it. Could you or someone else help me out with that information? I will include this in my conversation with him.

Thanks again all

Lars

Hey Lars,

Welcome aboard CH.com.  You've come to the right place.  I live across the sound from you on the Kitsap peninsula between Bremerton and Silverdale so am only an hour and 20 minutes away by ferry or drive through Tacoma from Seattle... 

I've sent you a PM so we can make contact.  I'm the guy who started the traffic on the use of vitamin D3 as a CH preventative in December of 2010.  It really works for 80% of the CH'ers who try it... and we're learning why it doesn't work for the other 20% along with solutions there as well.

Take care and please give me a ring.

V/R, Batch

Quote:

Do your headaches come and go quickly. For example, mine come in a matter of 1-2 seconds and then subside in the same period of time.

Lars, this is one of the typical signs of a CH. They do come and go quite quickly, but the amount of time they spend hanging around when they do come can vary a lot. Our goal is to seek the fastest abort time we can achieve. Using high flow O2 along with a chugged energy drink, I have acheived a 3-5 minute abort time nearly every time. blessings. lance

I have noticed that people refer to experiencing shadows and I'm not sure what a shadow refers to. Is it short transient spikes of pain that zings in and is gone? That is part of what I experience throughout the day with the intensity being mild and other times incredibly painful. Just curious as to what is meant by shadows.

Lars

Lars, I get those zings too. Some may call them shadows but I don't. For me, a shadow is a low level (1-2) CH that resists being aborted. It persists like a dull throb. Those zingers are reminders to me that the beast is just waiting to play. Whatever they are called, they hurt. blessings. lance