Alicia Clusterhead

Thanks for the responses guys, it's so different hearing from people who know what you are going through! The good news is that she did agree to send a referral to the headache clinic where hopefully I will be seen by a headache specialist. I still worry that I will hear the same thing there as I did today, but hopefully I will have better luck. Honestly, this site has been such a blessing, especially since I think the Vitamin D is working and this isn't information you can easily find researching Clusters on the internet.

I wanted to get some advice and opinions from you guys on this site. I went to a neurology specialist today and I wasn't all that impressed with the advice I received. First of all, she told me that she doesn't believe that I fit the profile for cluster headaches based on what is written on my file (I have no idea what the previous doctors have written about me as they usually don't share that information). I described them as intense headaches located behind my left eye with a quick onset(usually within seconds to minutes) that peak and last approximately 30-45min. Now, (I didn't used to) I have lingering headaches(shadows) that can last anywhere from 12-24hrs. The peak is so intense that I can't sit still and I can't talk, usually only whimper or groan. I can get upwards of 8 attacks in a day for a period of 1-3 months before they go away in remission. This remission period can last anywhere from 1-2 years. The pain is so severe it feels like a hot poker is being stabbed into brain through my eye and I have never felt anything as painful. Still, the neurologist believes that this is a type of migraine, not cluster. She wants me to stop oxygen and the Imitrex, telling me that I will probably have a stroke and may have already caused scarring in my brain. These treatments are the only thing that work during an acute attack. I am on the Vitamin D regime which I believe is working as I haven't had a cluster since my Prednisone treatment stopped. The thing is, she wants me to stop the Vit D treatment as well. I'm terrified guys. I'm afraid that she will prevent me from being able to get the injectable Imitrex with this diagnosis change and I probably will no longer be able to get the oxygen. Hopefully My cycle for this year is over so I wont have to worry about it for a while, but I am feeling really discouraged. She recommends that I start an antidepressant called Amitriptyline which is apparently affective for Migraine prevention. She also said during my next "migraine" I should drive to the ER (as if I can take myself anywhere when I'm having an attack" explain my symptoms (as if I can talk) and get migraine cocktail IV to abort the headache. Sorry for the long rant, I just needed to vent. Let me know what you guys think, does this sound more like a migraine than the clusters you guys get?

I am a little nervous of the effects of hypercalcemia. I know that many people here haven't had an issue with that so far, but I wanted to see what would happen if I took the daily recommended amount per clusterheads of 10,000 IU. I'm not too worried about the loading dose as the prednisone is working as a pause, so I'm not rushing to interrupt the headaches while the D3 starts to work (if I'm understanding this correctly)...I'm also having a hard time giving up dairy which is causing some hesitancy( worth it if it stops clusters, but if I can keep cheese in my life while keeping the headaches out, there's a golden solution I'm looking for). I might do a multivitamin next, but I'm taking some other supplements that I probably shouldn't go too overboard with such as a B-complex which does wonders on my energy levels.

This has been suggested to me a couple times, but my blood pressure tends to run on the low side (96-116/60-68). Enough so that some days if I stand up too fast I collapse. I really don't want that to become even more problematic.

So I am currently taking vitamin D3 (I thought I had been taking 10,000 IU but just found out it was only 5,000IU...oops) as well as 400mg Magnesium, just started on the Omega 3 fish oil, feverfew, and Riboflavin. I will see if I can get my labs drawn in Neurology on my appointment on the 25th to see where I am at to know how I need to adjust.

I have the oxygen, thank goodness! It definitely works, but I have been struggling with slap backs. After my first round of prednisone I had been getting hit pretty intensely with the headaches. After doing oxygen treatment for 15min on 15L with a non-rebreather within 30min I got a slap back. I then did twice the time on the O2 and within an hour the same thing happened. After the Imitrex it was 2 hours until the slap back where I just rode it out (excruciatingly) because I felt like it would keep happening if I tried to use treatment. I am now on the second round of prednisone and dreading the coming off it and am trying to prepare in advance. I am taking a high dose of Vit D3 everyday 10,000 IU I believe, but I won't know how effective this is until I am off the Prednisone. I am reluctant to do the psychedelic treatment because I am a nurse. I worked so hard for that license, and more importantly I would be completely devastated if this condition took that away from me as well if I were caught using them.

I recently ordered Head-Q by Health Concerns (a mix of anti-inflammatory herbal supplements)in anticipation of rebounds after my prednisone course ends. I read some reviews from people with both migraines and clusters that gave good reviews. Unfortunately, it won't arrive until the end of the month. I was curious if anyone else on here has tried it and what their results were.