Hello, My name is Kathleen. I found this group back in 2007 when I was diagnosed with clusters. I have since lost track of many things thanks to the blasted ha's but have found my way back once more. This seems to be the one place I know I can come and read posts that are similar to circumstances I find myself in and even more importantly find wonderful posts from some of you who are pf and living life again  :D My story isn't as optimistic as some but I hold out hope that one day it will be better. Well, better came about 1230 this morning and lasted for 8 hours  ;D I have lost so much ... my family, my job, the ability to go out ... I have been chronic since 2008 and they just dont let up. At least 1/2 of my time is spent with the monster to one degree or another and twice a year i spend 6-8 weeks with constant, vicious hits. Oxygen was the first thing I tried and it had no affect at all. Actually, I have been on most meds that are commonly used but the only thing I can say is that best/worst thing was lithium which made me a bit tired but would cause me to sleep for 18 hours at a time. At least I got some sleep :) I no longer take the lithium or the verapamil and all pain meds the dr had me on, which only made me sick, I quit taking; it didn't help anyway. I am not one to post much, and the reason I am today is bc I have been hit constantly since the last of April with only a day last week and a few hours here and there pf. As many of you know that means no sleep. The worst pain is that my oldest dau called me and tried not show the pain but I guess she could hear it in my voice and she hung up on me. She told me the next day that I was "out of it" and I said, "no, I was totally IN it wishing I were out of it". I don't like hospitals bc there isnt much they can do for you, but sometimes it gets so bad, I am so sick, I break down and have to go. I have one sweet dau, who hates to take me but does, bless her heart and she sits with me for a few hours and brings me home, sick tummy gone, and head pain still going. The other two kids don't even know I have been, they don't know what their sister, a young 21 yr old, gives up and does, bc they are unwilling to help. The first time I came to this site I remember a post from a 17 yr old young lady whose father suffered. What an amazing person with so much compassion not only for her own family but for others as well. I also made a friend who had many words of encouragement I will never forget. Thank you Joe! You are all so wonderful and courageous and I thank you for letting me share a part of you with me and a part of me with you.

K: Sorry to have to read your story but glad you are back with us!

Do you have access to a headache specialist. When we hit these blind alleys it a sign that finding new, fresh, sklled help is in order.
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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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If there is any question in your mind that your diagnosing doc (who called it Cluster) is not experienced/sharp, then consider:


Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
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Print the PDF file, below, and use a a tool to discuss optons with any doc you see.
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But my first concern is be very clear that Cluster is the dog in the fight.

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The diagnosing/treating neurologist I was seeing was very good but has retired. I am now under the care of my primary doctor as no other neurologist has been willing to take me on stating that they are unable to help me. The only neurologist willing to see me said there is no such thing as cluster ha's and need to be placed in a hospital and removed from all medication or move to california and let one of the clinics there treat me. Needless to say I never entered his place of business again. I see 3 doctors, all agree they are clusters accompanied by migraines which I have had for 17 yrs. Sometimes the clusters trigger the migraines, what a thrill that ride is, lol. There is no denying the difference between them. I remain on topamax, maxalt fiorinal and neurotin. I've read many posts about the vitamin regime ppl are taking and am very interested and hopeful that it may be helpful. I love gardening and started one this year but am having a bit of trouble keeping up now that it is getting warmer. I am enjoying some strawberries early in the a.m. tho :)

Hi Kat
May I ask how your oxygen was administered when you tried it. Most doctors don't have a clue ( as you have sadly found out) and they prescribe it wrongly. Most will  prescribe about 8 litres per minute with a nose canula which is fine for resperatory problems, but not for us.

You must have a minimum of 15 litres per minute, preferably 25, and a non rebreather mask. If you get either of those wrong , then it won't work. Give it another go using this method (if you haven't already) and you may well find it makes a huge difference.

Also, have you tried imitrex auto injections. It comes in tablet form too which is next to useless as it takes too long to get into your system, and nasal spray which I believe is a little better, but for most of us the injections are like a miracle and will abort a big one in about 5-7 minutes..

Read up on the vitamin D3 regime. It's been brilliant for over 80% of those who have tried it.

So sorry you have unsympathetic kids. Direct them to this site and they may learn a few valuable lessons. As for your youngest daughter, treasure her. We all need our supporters more than we know. Direct her here too, to the supporters board and while she supports you we will support her.
Maz.

Thank you Maz, I have told her of the sight but will tell her you are waiting for her to enlist haha. In answer to the oxygen question, my dr prescribed 25 litres with non rebreather mask which is what I was on. He was very insistent and determined to get medicare to pay for it and after a few letters, low and behold, they came through and I had my oxygen delivered. Unfortunately, it didn't stop the clusters or slow them up any.  Water and ice are two of my best friends :) 

Have you considered you may not have CH, but one of the many other conditions which mimic it. They all bring the same pain but have different causes, and as such respond to different meds, and what works for some won't touch the others. Have you tried the imitrex injections yet?

It really is important that you see a headache specialist to determin what you have in order for it to be treated correctly. Maybe that is why all the normal CH meds have not worked for you. You could have paroxysmal hemicrania, hemicrania continua, SUNCT, or trigeminal neuralgia. The treatment for them is totally different from CH. Also you should get a scan, just to rule out anything more sinister. It's better to be safe than sorry.
Maz

I have had a number of MRI's and CAT's and it was determined by my neurologist that they were indeed clusters. I was seeing a pain management dr at the time and was being treated for migraines and had been for a number of years and they kept getting worse and worse until he finally sent me to the neurologist. Tweaking of lithium and verapamil helped to lessen the severity for a while. I take one day at a time and sometimes its one breathe at a time. I took the time to look into the list you posted. Thank you.

While I assume you've tried these, I didn't see any mention of Imitrex injections or Migranal nasal spray, both of which are effective against CHs and migraines. They are abortives, not preventatives, but a good abortive can be such a blessing. lance

Hey Kat,

See one of your three doctors and ask for the lab test for 25(OH)D.  That's the serum level metabolite of vitamin D3 that's used to measure its status...  The normal reference range for 25(OH)D is 30 to 100 ng/mL...  As a CH'er you need to maintain a target 25(OH)D serum concentration around 80 ng/mL...  Odds are you are deficient...

If the wait is too long for this lab test, pick up the following supplements at Costco and get started...  The Mature Mult is formulated with most of the vitamin D3 cofactors but lacks sufficient magnesium and vitamin K2 complex.

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

The supplements and doses follow:

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

You can get the lab test later.

Take care,

V/R, Batch