Have not meant for it to seem like I disappeared after everyone here was so gracious to welcome me and share their advice and experiences to a newcomer.  I am grateful for the things I am learning from this website and the discussion forum.  The pain has just been relentless for days at a time and when I do have a pain free day it takes every bit of energy I can muster just to recover from the previous days of pain. 

Today is a good day and for that I am grateful.  It was just yesterday that I was feeling like I had hit the wall and could not deal with life anymore.  Amazing to me how quickly things can change.

On Monday I saw my primary care doctor again.  He seemed a bit surprised that the local neurologist he had referred me to sent me right back to him for my follow up care.  I asked him if he could please refer me to neurologist who specialized in dealing with headaches.  I suggested that surely there was a Kaiser doctor somewhere within Southern California who specialized in this field.  He didn't seem to know but he did write the request.  I now have an appointment Friday morning with a different neurologist but I do not know if he specializes in headaches or knows anything about cluster headaches. 

I am continuing to slowly increase the dosage of Verapamil and Melatonin.  One night I will wake up 3 or 4 times with hits and this will happen several nights in a row leaving me with a shadow that lasts all day long.  The oxygen does stop the pain from the hits that wake me up at night but it does not seem to help relieve the shadows.  Then miraculously the pain is just gone!  I might get one night with no hits and a day with no shadow and then it seems to be back with a vengeance.  I just never know what to expect.  The lack of sleep and dealing with this pain can be overwhelming when it goes on for days at a time.

Just wanted to check in and let you know I am still reading and attempting to learn all that I can.  So far I have not found a doctor who is the least bit interested in any of the information on clusters that I have printed for their reading pleasure. 

veecee

Sadly, your experience is a common one. There are no CH telethons, no 3 day walks for a CH cure, no celebrities coming forward with CH, and after all, It's Just a Headache! ;)

Continue to read of others experiences and learn what's worked for them. On verapamil, some go as high as 960 mg a day to get relief. Some have had to combine verapamil with lithium to get relief. Have you added the PH regimen to your diet? It's helped many lessen the number and level of  their attacks. Calcium Citrate with Vitamin D, Zinc and Magnesium, washed down with lemonade, up to 4X a day. Alters your arterial PH making you less succeptible to attacks.

Hang in there.

Joe

veecee wrote on Dec 1^st, 2010 at 12:23pm:

I am continuing to slowly increase the dosage of Verapamil ...

Be consistent and routine taking it.  If needed around 360mg a day, missed interval doses will have consequences in 12 to 24 hours.  At doses higher than 480mg/day, hits will again happen in 24 to 48 hours.  An approximate experience.

Veecee--

I have been having a similar experience to yours--I am taking verap, melatonin and benadryl (or dramamine) at night and had 2 painfree nights only to be hit with 3 headaches last night.  All I can say is this whole cycle the weather is in charge!  Every single night it rains I get hit hard with headaches!  I have never noticed a correlation with the weather but then again my last couple of cycles have been in the summer with mostly good weather.  Do you notice any patterns like that with the weather or is it just me?  Sorry if I am rambling--pretty sleep deprived today.  Good luck to you!

[font=Arial][/font]
I'm keen to try the PH option, does homemade lemonade mean just lemon-juice and water or is sugar included? I wouldn't think so but would like to know for sure.

Thanks all. :)

As Batch explained it, it's the citric acid component, the sugar would be optional for taste only.

Joe

[font=Arial][/font]
Thanks Joe,

We've been trying this and so far so good. Hubby's only had one in a week and he was able to get that early enough and abort it with a red bull and a peanut slab.
This is wonderful as he had 9 in 36 hours previously, the oxgen didn't work and the Imigran injections only lasted for a couple of hours.

So we're following batch's recommendations and just having lemon juice in water with the vitamins mentioned.
We also did additional reading on the PH diet and are including more alkaline foods and trying to reduce acid forming foods.
Interestingly, it appears some baking soda in water and hour before an acid rich meal - can reduce the effects. And also, alcohol is one of the highest acid things we can consume.  It seems to make a lot of sense.

Another thing we noticed was that the pharmacy gave my hubby a different brand of Lithium - yep....2 weeks before the recent more frequent than ever attacks....thank goodness he's back on the Priadel and that along with Batch's research seems to be working so far..... time will tell - but as you all know - anything is worth a try.

We hope you all have a wonderful and CH free Christmas. XX [smiley=hug.gif]