Hello to all,
         Haven't posted for a few weeks and I'm feeling the need for some help again. Over 5 mo in this damn cycle and I've run into some other medical issues since my last post.
         I've been on Verapamil 200 mg since April 8. I finally felt some change after about 14 days,, a baby step but I'll take anything at this point. The daily head pressure seemed to break, 2 good days then 1 bad, 3 good days and then 2  bad. Funny I should call that progress but to me it was  . Still have slight eye droop and pytosis(small pupil) and still have nerve burn in my head, comes and goes, but still on a daily basis. Didn't think these symptoms were bad enough to fill my oxygen script and was so hopeful it was almost over. Today I spent the day getting my Oxygen ordered, It's coming tomorrow. That's the good news. I sure wish now I had done this sooner.
       My dilemma is this. Had to have more blood work since starting the Verapamil. Apparently the blood pressure meds I've been on only since Jan. which I swear was caused from the prednisone dose have messed up my kidneys and I'm Anemic now as well.  OMG!!!  And I thought I was being soooo careful about what I was taking for this damn "thing" in my head  . 
        What have I learned from this? I cannot take pharmaceuticals and I definitively don't want to be a guinea pig to drug companies. Bring on the Oxygen! Out of pocket expense or not. Of course Insurance will cover it 100% after I meet my deductible.  That shouldn't take too long the rate I'm going. Damn!
         I'm still a newbie and still have alot to learn.
Right now I'm feeling angry, scared and I want to cry again, all at the same time. Damn!         

Thanks for listening guys/ gals.

Donna Mae

Prednisone. Yep that stuff can be seriously dangerous. Sorry to hear about all the lousy trials and tribulations you continue to have. 

What Joe said about clusterbusters. To think that it's non toxic and we've seen some CHers get some astounding relief.

(Apologies to the regulars here, because here I go again with my umpteenth insertion of the Newsweek article link) Donna Mae, if you haven't seen this yet, I figure you might want to give it a serious look:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Hi Guys, Me again! Not having any luck with O2. The beast is building strength again since last weekend, 6/5. Had to leave my job on tuesday it got so bad.  Had a real rough week thru the weekend, k5 & k6 for hours at a time. Called my Neuro Mon a.m. 6/14 and got an app to see him that day. So I'm back on Pred taper, only 6 days though and he changed my Verapamil meds. Day 3 on pred taper and have had some head pain/ burn a few too many times today. Not sleeping again.  6 months now for me in this damn cycle. I'm so tired of this.  I'm so tired of hearing family , friends and co-workers asking "How are you today?" and I have to tell them, "The same, still in this cycle, heads killing me". Thought I was almost there and then Slam! He's back and telling me he's not done with me yet!  I'm really getting scared he's not ever going to leave. He's moved in to stay.
      My neuro thinks I need to go to a pain clinic. Anyone else gone that route? I have no clue. What can they do? I sure don't want to be taking any more drugs. There killing me. High BP, Anemia, Kidney issues! I was perfectly healthy 6 mo ago. WTF! Sorry bout that! Been using those 4 letter words alot lately and I'm really a lady who doesn't ever swear!
       I just needed to vent tonight guys. Thanks for being here. Just knowing I'm not the only one dealing with this crap and the only one who feels there going nuts. You all know!

Crying Again!

Donna Mae

Thanks Don for responding. I have the rebreather mask with a bag. I have the o2ptmask sold here by lifegas. I've tried it several times. Used 3/4 of my M tank already. Thought It was helping a couple times. Gave me some relief for an hour or two. Then I got nothing from the treatment next 3 tries. I've read the oxygen link over and over. I guess I don't know what you mean by hyperventilating. Please someone explain to me what that means.

Donna Mae

Hi Donna Mae.  I bet you know what I am going to say and I bet you won't do it.  You are a classic case of failed pharmaceuticals.  I second what the Bejeeber and others have said about checking the clusterbuster website.

The RC seeds are easy to get and successful for many.  Breaking your cycle would be harder, but possible, and avoiding it next time much easier. 

If you read your post, take away the perceived stigma of "illegal drugs!", you are a classic case for trying  psychoactive plants and fungus.

Just my .00002cents.  Don't hate me for jamming this one a little harder than normal , love me for caring and trying to help

--The Shaggy

Hi Guys!
        I made it through the day at work today. Had a few tough episodes but was able to escape and work thru them. Tomorrow I'm in charge, bosses are away and I'm dropping down another 20mg of pred. and it has me very nervous. I just hope and pray I can make it thru the day again.
        Thank you all so much for all your advice, I knew I wasn't doing the O2 correctly, just inhaling and exhaling at a normal pace. I have 15 lpm reg. and will check into ordering a higher flow rate reg. tonite.
         Guess I need to talk to Batch again for more details and tips proper delivery of treatment. Please Keep your fingers and toes crossed and I'll take any prayers too. I have to get off these drugs.
          And thanks Shaggy, not offended at all by your advice, it's my husband that seriously will have a much bigger problem with the alternatives than me. It will be my last resort. He will just have to deal with it.
          You are all so very kind and caring. I'm so thankful I found this site and all of you.
           I'll keep you informed how I'm making out.

Donna Mae

I hear what you are saying Donna Mae.  You're not the first to have a spouse that doesn't want their mate to try the alternatives. 

For me, having never done "drugs" before and never plannning on doing them it was still an easy decision.  I got a lot of info from friends and the busters and did my best to do it safely.  My friends who had done a lot of drugs thought I was just using it as an excuse to do some shrooms dude, you know cause you could just take some aspirin for your headache, right?

My non-drug taking friends were a little freaked out.  But everyone who knows me, knows I don't do recreational drugs so most were willing to listen.  I sent a few articles around to emphasize my point and now we have a great video by Bob that has been making the circuit here.

When I really sat down and described the pain and the frequency to people, everyone, even my mom, is happy that I am finding relief.   Who wouldn't be?  And they can be very effective with small doses.  Doses that do not create any kind of psychoactive events.

I am definitely not saying 'you should', but no one knows the pain except us.  And if the pharmacueticals are destroying you, there are better, gentler options.

mean face guy wards off evil cluster headaches!

--Shaggy

You can find bigger regulators on Ebay from time to time but I bought mine from the following.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or , a 25lpm for my E-tank, model# HCS8725M for about $35, made in China.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or , for any size tank and any flow up to 60lpm, for $162, you can get one for around $140, and made in the USA, also are made to order. Very high quality.

Lifegas has one for either tank that goes to 25lpm with a Demand valve fitting, (just the fitting not the Demand) for about $285.

Good luck, Don

You're welcome Donna Mae,
Pete helped me big time and still is. I ordered my first Flotec in '08 and it took 6 days to arrive. Just got one for my E tanks 3 months ago and took a little longer, they were bringing up a new system.

They are a great help for me, I went from aborting 60% to more like 98%. Hard to believe but true. Of course CH still sucks.

Don

Hey DonnaMae. Pray you're sleepin' right now, but when you wake up, am also prayin' you have a pf day and night! As to clusterbusting, should you get an appointment with the clinic, bring it up. I did. I was surprised by the lack of judgment and the support I got from my family. One of the recommendations is to have a close supporter on hand while busting....sounded right but I needed to have their understanding first. Good luck and let us know what happens. lance