Hi all. I am new here and from WV. I am Tara. I got a mind blowing headache in 2000. I was MRI-d, cat-scanned, and had all the other tests done. I was also dealing with a multiple sclerosis diagnosis so a lot was going on. They could not figure my headaches out. One neuro said it was a weird migraine, then a cluster headache, then maybe my MS, then she left the state and I was on my own. Then they stopped for about a year and a half.

Now they are back with a vengeance. The whole droopy eye, red eye, watery eye, ice pick through the eye, let me take a hammer and just break my head open headache.

Yeah, I read up on the headache. It all made sense. Except one thing. Mine never goes away. It lets up. But never goes away. In fact it lasts for months and months.

Then today I find this site and I start reading about a shadow. How long can a shadow last? Or more importantly, is there a place I can read up on shadows? I had never heard of them before.

I basically have a 24/7 headache where it spike at about 7 pm at night for a few hours and by spikes I mean it tries to kill me.

Thanks for any input and to all you fellow clusterheads... (((hugs))) for all you endure. Pain sucks and we none deserve it.

When you have had several medical issues it may be difficult to make a clear Dx of Cluster. There are a number of disorders which mimic Cluster but which are not headache disorders.

Without a skill headache doc it's going to be rough. If at all possible;

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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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See:

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Thanks. I have a great neuro. She is my MS doctor who is treating me at the moment. She has me on Topamax and Zomig. Am tapering up on the Topamax and just got the Zomig today.

My question is about the shadows.

What exactly are they?

What do they feel like?

How long do they last?

I am wondering if what I feel all the the time and this pain are shadows or something else.

Shadows are a   low/moderate headache which may effect us between major attacks. No special description. They maly stop when the Topamax takes effect.

I'm not predicting but good many folks here have dropped Top because of the mental confusion which is a side effect for a significant % of users. It certainly would not be a first choice. IF this develops just report it to the doc.

Suggest you print the PDF file, below, and use it as a tool to discuss options with doc.

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tarabunnyears wrote on Sep 8^th, 2014 at 3:57pm:

Thanks. I have a great neuro. She is my MS doctor who is treating me at the moment. She has me on Topamax and Zomig. Am tapering up on the Topamax and just got the Zomig today. My question is about the shadows. What exactly are they? Like Bob said, they are low grade cluster headaches. What do they feel like? They feel like a cluster headache but don't ramp up to a full scale attack. How long do they last? Anywhere from a few minutes to a few hours. I am wondering if what I feel all the the time and this pain are shadows or something else. It's not for me to say but a pain that lasts all day every day is something to discuss with your doctor.

For my shadows I down a shot of 5 Hour Energy drink and the shadow will disappear in about 10 minutes.
On the left side of your screen is a 'cluster quiz' button. Have you taken the quiz?

Hey Tara,

Welcome to CH.com.  You've come to the right place.  We know what you're going through with CH and the good news is it doesn't need to be that way...

You've got a double whammy with CH and MS...  The interesting news is both medical conditions are associated with a low 25(OH)D serum concentration (vitamin D3 deficiency), and the good news is both conditions respond very well to the anti-inflammatory regimen with at least 10,000 IU/day vitamin D3.

Ask your PCP or neurologist for the 25(OH)D lab test.  The odds are you are vitamin D3 deficient, i.e., a 25(OH)D serum concentration less than 30 ng/mL.

The normal reference range for the 25(OH)D lab test is 30 to 100 ng/mL and most CH'ers respond to the anti-inflammatory regimen with a cessation of their CH when they elevate their 25(OH)D serum concentration up around 80 ng/mL.

RRMS takes a bit higher 25(OH)D serum concentration between 80 and 130 ng/mL.  They conducted a very important study of RRMS patients taking escalating doses of vitamin D3 in six week increments up to 40,000 IU/day over a one year period.  All participants responded to this dosing schedule and there were no adverse events.

You can read the final report of this study at the following link:

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I have two very dear friends with RRMS.  Both responded to the anti-inflammatory regimen and are no longer taking any of the more invasive medications usually prescribed for RRMS...  They're both now leading very normal lives.

The "Go To" link with info on all the anti-inflammatory regimen supplements, doses, drug interactions and contraindications follows:

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The following table represents the latest list of anti-inflammatory regimen supplements and doses:

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I've found the following supplements shown by brand in the photo below are formulated with most of the supplements we need.  I buy them at Costco, but you should be able to find similar formulations at most Vitamin Shoppes, supermarkets, Wall-Mart or over the Internet at Amazon or iHerb:

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The vitamin B 50 is not shown.  You’ll need a 3-month course of vitamin B 50 to handle any deficiencies among the seven B vitamins.  Although the Super K with vitamin K2 complex isn't essential in preventing CH, it is needed to handle the increased serum calcium made available by taking vitamin D3 at the doses we take.

There are a growing number of studies finding the super K2 complex helps direct calcium away from soft tissues and arteries directing it instead to bones and teeth improving overall bone mineral density.

There are also a number of studies that have addressed the optimum ratio of calcium-magnesium supplements.  The general consensus is to keep these two supplements at a 1:1 ratio.  Many have found 400 mg/day sufficient.

Most CH'ers who have started this regimen in the last year and had their 25(OH)D results come back below 30 ng/mL, have used the accelerated vitamin D3 dosing schedule and found it got them pain free faster than taking the maintenance dose of vitamin D3 at 10,000 IU/day...  The accelerated vitamin D3 dosing schedule follows:

On day one, take the entire regimen with 10,000 IU/day vitamin D3 and two of the Omega-3 Fish Oil liquid softgel capsules along with one each of the remaining supplements the first day.

If there's no allergic reaction to these supplements (very rare), take 20,000 IU/day vitamin D3 for the next two weeks along with the rest of the regimen.

In addition, for the first two weeks take a 50,000 IU loading dose (ten of the 5,000 IU vitamin D3 softgels) once a week on top of the daily dose for two weeks.  The day of the loading dose you'll be taking a total of 70,000 IU vitamin D3.

After two weeks on the above vitamin D3 dosing schedule, stop taking the once a week loading dose and lower your daily vitamin D3 intake to 15,000 IU/day. Continue at this dose for another two weeks then lower the vitamin D3 intake to a maintenance dose of 10,000 IU/day.  At that point see your PCP for another lab test for 25(OH)D.

If you total the vitamin D3 doses you'll be taking 600,000 IU vitamin D3 over the 4 week period.  This should elevate your 25(OH)D serum concentration by 60 ng/mL, (150 nmol/L) above your starting level.  Assuming that starting level was less than 30 ng/mL, (75 nmol/L), your serum concentration should be around 85 ng/mL, (212 nmol/L).

If you're like most of the other CH'ers who start this regimen, you'll experience a favorable response within the first week to ten days.  Migraineurs sail through their usual cycle times with nary a twinge...

If you have questions please contact me at pete.batcheller@verizon.net or Skype me.  My Skype Name is pete_batcheller.

Again, the above regimen of over the counter nutrients (vitamins and minerals) is called the anti-inflammatory regimen.  You can read all about it along with more about the relationship between vitamin D3 and MS at the following links:

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Take care, please feel free to ask questions... and do keep us posted on your results after starting this regimen.

V/R, Batch.