Ive been on prednisone for 3 months, im on 30mg, and I will be doing a very slow taper.  Im also on vitamin D3, Verapramil, Melatonin,  Zomig, and I now have oxygen, which I have not used yet....  I have two questions:

I have not been having a very good response to any of my current treatments.

1) I asked my neurologist, if I was your mother, what would you recommend?  He said nerve block and lithium.  Lithium?  Scares the hell out of me.  Any one have any thoughts on lithium?

2)  I call it "in between" pain.  I actually havent had a cluster headache since saturday, but I get a lot of "in between" facial pain like behind my eyebrow or cheek bone, or forehead on and off throughout the day.  Some call these shadows?  I dont know what to think of these either...

My husband took the 'cluster cocktail' of lithium and verapamil for years, in very high dosages.  As I recall he needed blood work from time to time to check the lithium levels.  He had no problems with the combination but everyone is different.

He also used oxygen therapy....important to have high flow regulator and proper mask. 

I can't comment on the nerve block as he never had one. 

Good luck and I'm sure others will be along to answer you questions in better detail.

Jackie

Hi
The shadows are normal. I think we all  have them to some degree. Personally I'm grateful for them. As you say, tolerable, and if that's as bad as it gets, well, that's fine by me. I'll take the shadows any day.  :)

I 100 % agree with you on the shawdows.  They are tolerable, very, as opposed to what I could be going through.  I never knew what they were called until I started going through this website and seeing people talk about them, and have a "name" for them.  I think a lot of my head pains are also just stressed induced and tension and anxiety.  Im going on 3 months with this cycle and its turning me into quite the emotional wreck.  Ughhhhhh, im just tired.

I was on 900mg of lithium for aprox. a year before it quit working for me.  I had no problems while on it and felt actually quite good while on it.  Don't be afraid.  It is an old drug and the drs are very familiar with the potential serious side effects and monitor your blood levels and you for signs of trouble.  I never had trouble with it and highly recomend it.

They could be rebound headaches, caused by the meds
your taking.

Hoppy.

Alynn - nobody talked about triggers and you yourself said nothing about that. So, I got to say that: look for your triggers. Finding them will not necessarily end the cycle, but it might.

<If my bird will let me type for a second or two...>

I recently read that Lithium can mess with your thyroid causing thyroid issues you may not have had before.  Do lots of research and discuss thoroughly with your doctor.

<had to stop typing several times for bird lol>

<Edited to add>
Article:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I used lithium as my primary prevent for over 20 years....while working as a deputy sheriff. At 900-1200 mg a day, it would block up to 90% of my attacks. If I didn't tell you I was on it you'd never know. My doc did the thyroid function tests every couple years, I never had any issues.

You pee a lot the first couple of weeks, you get a little lethargy but nothing a cup of coffee won't kick.

I only stopped taking it cuz the Vitamin D-3 has stopped my clusters cold for the last 3 years.

Joe

I honestly feel like I dont have any triggers.  I havent had a drop of alcohol, becasue I know that could cause them, I dont smoke, I exercise daily, trying to eat healthy, taking all the vitamins and prescribed meds, this attack is just taking longer to go away than expected.

I will give Lithium a thought, maybe, only if I get more desperate, which may be soon.  But I do have underactive thyroid so I know that I will have to be careful. 

My goal is to use my O2 and Zomig, along with my Vit D and Verapramil and get off this prednisone and hope and pray the cycle ends soon.  Although my doctor wants me to stay on the prednisone for another couple months, he said ultimatly the tapering is up to me.  Ughhh.

My CH sessions started about 7 years ago, the first CH's came everyday around 6:00 pm and would last typically about 15 min, that session only lasted for 1 month and went away for the next 5 years. The next session started in the fall and lasted for almost 5 months with 1-5 CH's per day lasting from 5 min to 30 min, GOD AWFUL!! I tried nerve blocks, meds, acupuncture, nothing helped. My last session started about 2 months ago with 1 headache around 5-6 pm. I heard about an Orthospinologist who had done treatments for Ch and I went to him (Dr. Ken Humber, Waleska, Ga.), he did an adjustment to my Atlas in my neck and I have been CH free for the last month and a half. I resumed normal lifestyle habits and so far nothing has triggered the CH back. Hope this might help somebody like it did me.

Alynn - I REALLY think you should try consulting another doctor for a second opinion. Taking prednisone for so long may not be very healthy. As a matter of fact, it's not better than taking lithium as far as I know. And if varapamil doesn't do the job there are half a dozen other preventatives, which are far less dangerous than a long steroid treatment.

Also, make sure you consult Batch about the application of the D3 regimen (try the "123 PF days.." post).

I totally agree with Shooky about the dangers of long term prednisione use. It can result in damage to joints and bones. Someone posted here about needing two hip replacements whilst still young (think it was in their 30s).

High doses of steroids for a long time can be really bad for you.
This has been my experience with lithium: nausea, vomiting, blackouts, poor memory, concentration issues.
I'm probably super sensitive to this drug, and yo ushouldn't let that stop you from trying it because a lot of people have a lot of success with it for cluster but it didn't work for me