Hello everyone, Im looking forward to being part of this family. I have been experiencing episodes of clusters for 18 years,diagnosed at 15. My worst nightmare has started again about a month ago.
I was doing well until a doctor strongly suggested I start taking zoloft for depression. I should have known better but was hoping everything would be ok and the clusters wouldnt start again.She told me they wouldnt. Well they sure did and my verepamil is not working, neither is the prednisone or the acupuncture I have been getting. My new neurologist is clueless and will not prescribe me oxygen which I know will help ALLOT. She referred me to 2 headache centers that do not even exist. I am going to a new doctor this Tuesday and I hope I will get better treatment. It infuriates me when doctors dont understand or even care to.
I am really struggling this time. I am a new single mother, my son is almost one and I really cant seem to keep it together for him. That is what hurts the most. I am so angry at myself for taking that zoloft.
Its 1:30 am and I am terrified to sleep. The thing that baffles me the most is I still wake up in disbelief that it is going to happen. When I feel that shadow I still think or wish that its not a cluster, but it always is. This time around I am having 4-5 attacks a day, mostly during day time when Im not sleeping. they are not time predictable at all either.
Has anyone had experience with an onset triggered with anti-depressents?
Thanks for listening to misery and I am grateful to be part of a group of people who truly understand.

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Your doc experience is all too common here. We strongly suggest finding a specialist:

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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No material in my files re. anti-depressants triggering a cycle

Might print out the PDF file, below, and use it to discuss treatment options with any doc you see.

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Finding an experienced headache specialist neuro, who is familiar with CH, can be a daunting battle. Your next best bet is one who is open minded enough to consider the info you bring them. Print out the oxygen info link and bring the supporting info to your doc. It's written in "doctor language" with the supporting info they're more comfortable with.

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

What dose were you on with the verapamil? We tend to use it at higher doses then the docs are used to, with some going as high as 960 mg a day to get relief. Consider working with your doc on the dosing before giving up on it. Some have found success combining lithium and verapamil, when neither worked on its own.

Have you tried melatonin? An OTC sleep aid, start with 9 mg about 30 minutes before bedtime. many can avoid the night time wake up hits this way. Give it a few days, you may have to adjust the dosing up or down.

Glad you found us, hang in there. :-/

Joe

Welcome aboard Elle,

Read the links provided and best of luck, we've all been there, and for the most part... Continue to be...

Almost 20 years... and I'm still kickin'...... ;)

All the best,

Baer

Hi Elle!

Welcome!! You have come to the right place! I am also a mother of a young one and I understand the extra that adds on to you!!

Check out Batch's vitamin regimen by searching the board and let me know if you can't find it. Get your vitamin D checked asap to see if it is low. I am waiting for my results now even though my cycle has ended. Coincidence? I am not sure, but hopefully I will know soon and this regimen will prevent the next cycle.

Wishing you PF days soon!!!!

Hi Elle and welcome.
I always encourage people to get their own O2 equipment. It is not as expensive as you might expect. After getting caught several times in my early years... moving, finding a good doctor, insurance companies that balked at providing it, etc. I just couldn't see another way to avoid it. I have always been glad I made the investment. I personally can't imagine having to suffer through my CH without O2... although I did for many years.
About the anti-depressants... I personally have not noticed them making a difference (on my depression either). I have heard of verapamil (and prednisone) stop working, the beast has changed things up on me several times.
Stay strong.