Hey everyone! I've been reading this website for about a year now. I'm always looking for ideas to treat my CH's. They started about 5years ago and progressively have gotten worse over the years. I didn't know what was wrong with me and why this was happening. I just started seeing a neurologist this year! I know it's crazy that I lived in pain for so long and didn't see a doctor. But like I said they weren't as painful in the beginning. I've tried a lot of meds and the only one that seems to work is imitrex. And I've learned the hard way that you can't take it every day because then it starts causing headaches. I find that taking a 100mg imitrex pill an hour before bed actually prevents my headaches all night!! But like I said I can't take them every day bc they are hard to get all the time and cause more headaches with long term use. I have tried an occipital nerve block procedure in June and I was actually pain free!!! It worked and I thought I had found my solution!! I'm in a cycle currently so I went to get the ONB procedure again and it didn't work  >:( I've tried Verapmil, vitamins and my neurologist just recently suggested taking 9mg of melatonin a night. It hasn't worked. I've tried the fish oil and Vitamin D regiman before and it made my headaches worse so I quit taking it. These headaches are horrible and every solution I try doesn't seem to work. I'm grateful that the ONB did work the one time for me and I was CH free for almost 6months! I'm going to try to take the fish oil and Vitamin D regimen again. Maybe I didn't give it a chance. I'm so desperate to find a solution and to live pain free. Tonight is the first night for the vitamin regimen so I'll see how that goes. Does anyone know how long it takes to typically work? I know everyone's body works differently but maybe a estimated time frame?? I will appreciate any advice given. Thank you   

Hi KitCat and welcome,
About the vitamin D3 regime, I started to take it in the
middle of a cycle, it didn't work in fact it made things
ten times worse, but I persisted, and carried on taking
it when my cycle had finished, that was two years ago,
and been pain free ever since. On the Melatonin this
can take a few weeks to kick in. Folk find 5-15mg
taken two hours before bed works the best.

Hoppy.

Hi KitCat,
Have you tried oxygen. It's a great abortive IF it's used properly. You MUST have a flow of at least 15 litres per minute (more is better), and a non-rebreather mask. You can use it as often as you like, unlike imitrex. But it has to be used  as above or it won't work.

Ask for some imitrex auto injections instead of the pills.They work much faster and far better. I use the 02 when I'm at home and save the injections for when I'm out. They are expensive, or you may have insurance issues on quantity, so try to stockpile a few between cycles so you are well prepared, and it helps to spread the cost.
Maz.

Having been reading here for a year you've been exposed to several recurring bits of advice that need your attention:

1. Neurologists are often a poor source of help with Cluster because their training/experience with complex headache disorder is so limited. Reading into you comments leaves me wondering about your guy.

If at all possible, work with a headache 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 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.
=====================================================================
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. Jumping around with different treatments doesn't give any single one the time to see if it's effective. You need a doc who starts one approach and then adjusts dosing over time to see the results. Significant variation in dosing and combinations of meds is not uncommon and so patience is essential.

3. Self-diagnosis and self-treatment isn't cool. Mixing the doc's Rs with vit D, etc. onlly confuses the pictures since you won't know which program is effecive, should there be improvement.

4. Imitex pills are the least effective form of this med for Cluster.

5. What you read here is often useful and helpful but NOT a substitute for a doc skilled in headache.

Thank you everyone for your responses!! Much appreciated!! Since the vitamin regemin my headaches have been a lot worse and during odd times instead of my regular night hours. I'm taking 3,000mg of fish oil and 10,000 bui of D3. Should I wait to start taking it after my cycle? It's been really bad since I started it! I also haven't tried oxygen yet. My doctor wants to
Try that next. I do use the imitrex nasal sprays when I feel a bad one starting. But I do take 100mg imitrex tablet before I go to bed and it seems to work but I hate taking medicine all the time lol! I would rather take the vitamins. So I'm not sure if I should continue taking them or just wait until my cycle is over. I'm in the 5th week and my cycles usually last any where from 4-8 weeks. Then I get them every 5-6months. Any suggestions about what I should do as far as continuing the vitamins??

It appears that you have not seen a SKILLED doc either for a diagnosis or treatment. Just not wise! to try and diagnose and treat yourself. WE are not in a position to diagnose you!
----
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.
=====================================================================
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.
======================