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Cluster Headache Help and Support >> Cluster Headache Specific >> Persistent shadows
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Message started by retrovertigo on Jul 17th, 2016 at 10:37pm

Title: Persistent shadows
Post by retrovertigo on Jul 17th, 2016 at 10:37pm
It seems like every time I make headway on beating this it throws me a curveball.

My cycle mostly did it's normal thing. O2 and busting made my last two cycles a relative breeze. Did the same this year along with vit D3 and increased water intake. Cycle was largely uneventful. Avoided any really bad hits. Lack of sleep always hurts and shadows were worse than most cycles (now running nearly two years between.) Used Imi 4 times and consumed many monsters.

Cycle seemed to be done, but after several PF days shadows returned. And got worse. And worse. Thats where I am now. Nearly a week straight of a really bad "normal" headache. I've never had anything like this.

I will be going to my PCP tomorrow to talk about possible explanations. I have other symptoms of something wrong; muscle fatigue, sleeplessness, confusion, shakes, sweats and gastrointestinal unrest. These were starting during the cycle but I didn't pay attention or passed it off to missing so much sleep. Also none of the symptoms other than the headache are overwhelming and I have no fever.

I am concerned I might have Lyme that helped set off the cycle. But maybe this is just the new way my cycle is running it's course. Before I started the bust/O2 regimen my cycles had been getting longer. If not for those things I would almost expect to still be in high cycle.

Sorry if this has been discussed elsewhere. I searched the board and couldn't find anything. People here have certainly been the best resource for info.


Title: Re: Persistent shadows
Post by thierry on Jul 18th, 2016 at 6:04am
Hi retrovertigo,
sorry to hear that the shadows are at you.
You could try taking loading doses of D3.
It usually works for me. You could take 50000iu D3/day for 5 days -as well as all the co-factors-.

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All the best

Title: Re: Persistent shadows
Post by retrovertigo on Jul 18th, 2016 at 7:16am
I was trying to follow the advice here on vit3 but after 5 days of loading my stomach was churning like a butter mill and I had severe diarrhea. The Vit3 was only change to diet so I stopped. But now I am suspicious I have something else going on.

Title: Re: Persistent shadows
Post by Peter510 on Jul 18th, 2016 at 8:16am
Hi there.

Read through the second part of the attached. It gives you a couple of options on loading doses.

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Come back with questions.

Regards,

Peter.

Title: Re: Persistent shadows
Post by Bob Johnson on Jul 18th, 2016 at 1:59pm
Please, let's start agan and get a bit organized.

1. Does your doc have any experience/taining with headache disorders? Mos GP lack either and this is a far more complex area of medicine than many doc and paients appeciate. Consider fincing an specialist.
====
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 Login or RegisterEND 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 Login or RegisterEND 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 Login or RegisterEND 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.
=====================================================================
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.
=========================

2. Has your doc ever given you this combinaton: one med to kill attacks rapidlyl; 2. a different med which you take for some time which works to prevent attacks.

This approach is differnt from using D3. If you want to try D3 it's important that you understand the whole progamand use it as ouutlined here. Folks will steer you the the infro you need, if you are inerested. BUT--you use one program at a time. Trying one approach and parts of another won't help and, if you get some relief, you won't know which approach is doiong the job. Sing one song at a time...

Title: Re: Persistent shadows
Post by Hoppy on Jul 18th, 2016 at 4:36pm
Hi retro, depending on what Magnesium you are taking will be the culprit for the runs too the loo, their are more gentle versions you can buy.

Shoot Batch a PM, he's the guru on the vitamin D regimen.

Hoppy

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