Jump to content
ClusterBusters
BluesFan85

Update on my story

Recommended Posts

Okay so I have basically been Chronic a little more then a year now but I've been able to handle the hits exceptionally well and the Verapamil seemed to be working even though I was only taking 100mg 2X/day.  I was getting just like 5 or 6's and they'd last for like 20 minutes or a little more and go away, I was always able to fight through them.  So the last months though I've been getting hit with the straight 10's you all know what I'm talking about.  They've been getting closer and closer together and longer in duration over those months to where I am now.  I can't sleep if I fall asleep I wake up within 30 minutes and have a bad shadow which I'm lucky doesn't become more.  This goes on for like almost 2 days and then I finally get like 6 hours of sleep, it's ridiculous.  Anyways I went to doctor yesterday and I'm upping my Verapamil to 180mg 2x/day and I'm getting the Zomig 5mg Nasal Spray, as long as my insurance covers it.  It covered the 100mg Verapamil so I should hope there's no problem with this stuff.  I also got a reference to go back to the Neurologist again.  Last time I saw him was like 8 years ago.  So I'm going back there in 2 weeks hopefully he'll know more then me for once.  Another thing is does anyone get disability for these?  I really want to work but there is just no way I can, no way.  Anyone know what my 1st steps for going about this would be?  I need some income I have nothing and I'm just getting really desperate so if anyone has any tips thanks.  Also I'm still thinking I'm to try and go the Mushroom route.  I used to trip on LSD and Shrooms a lot when I was younger and its funny thinking about it now the summers I did that a lot I didn't get cluster headaches.  I don't know why I never thought of that probably because there really wasn't a correlation between the 2 yet in the cluster headache world.  Anyway thanks to anyone reading this it feels good to just vent or let out what's going on with me.  If anyone wants to talk 1 on 1 or anything just send me a message.  Names Jacob I'm 31 and live right outside of Chicago IL

Share this post


Link to post
Share on other sites

There are people with CH who have obtained SSDI disability.  For most, it was a multi-appeal, multi-year process, but I gather that some got it pretty quickly.  No kind of headache is specifically covered by the SSDI guidelines.  The Budget Director of the Trump administration said just within the last few days that he'd like to see more people thrown off disability (the ones that "don't deserve it," of course).  You can get the basics here: https://www.ssa.gov/disabilityssi/   Lawyers who handle disability cases can't charge you, except for basic things like copying, unless you win your case.  In previous discussions of this here, some people have said handling your case yourself is the only way to go, and others have said they were glad they had a lawyer.  I remember one or two saying they were glad they had an experienced local lawyer who knew the judges who rule on these cases.  There are many big law firms that do mostly disability cases.  Since it's free to ask, you might consider calling some to see what they advise you.  I have figured that because of the payment situation, they might not want to take a case they don't feel confident of winning.  

  • Like 1

Share this post


Link to post
Share on other sites

Hi Jacob and welcome to the community!  We have several members here from Illinois including our illustrious leader who is from the Chicago area!  You should make plans to attend our annual clusterbusters conference in mid September which is being held in Chi Town this year if you possibly can......we had over 180 attendees last year in Austin and I hear we're on pace to surpass that number this year!!  Nothing like meeting a bunch of folks that know first hand what you're dealing with!!

Dallas Denny 

  • Like 2

Share this post


Link to post
Share on other sites

Hey Jacob,

Small suggestion. You are on the Extended Relief form of Verap it seems based on the twice a day dosing. It has been found that CHers do better with the old short acting version for some reason. You might try that.

Be aware that Verap lowers blood pressure. This can be a limiting factor for some patients.with normally low blood pressure. Just something to keep in mind. I could not go higher than 240/day. I took 80mg in the am, 80 around 8pm and the last 80 during the night as my hits are primarily nocturnal and I was going to be up. Worked better for me that way. Even at that low level, my resting bp after the 8pm dose was 80/60.

  • Like 1

Share this post


Link to post
Share on other sites

Hi Jacob, hate to hear the CH is still relentless for you, but glad to see you continue to get excellent advice here.

Many other headbangers have also reported looking back to when they had been recreationally tripping and realizing they'd been CH free during that time period. In your case, it seems it could be a positive indicator that busting could work for you. You'll want to be aware that triptans like Zomig are known busting "blockers" and should be avoided for 3 to 5 (depending on who you're talking to) days before busting.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×