Hi Brew,

It is amazing what a good night's rest will do ...!  I am interested in your thoughts on having the sansert compounded in a local pharmacy -- do you really think insurance will pay for it?? Never thought of that - next MD appt is 3/3 and I intend on exploring this issue and connecting with her Boston contacts on "busting"...

AND in the meantime I am going to gather as much info as possible on all the alternative treatments suggested on clusterbusters but I need to take the time to sort it all out and clearly focus on what is available.

Take care and please continue to share any thought or comment as you never know which one will truly alter the path of another.

Dawn

I can only speak from personal experience, but for the couple of years I took it, my insurance paid for it. Since it is a compounded substance, it was in the highest copayment category, but I think it cost me $30/month (my plan at the time was $5/10/30, or something like that). If I had paid retail, it would have been far more than that.

Okay, here's an ugly update; woke up this AM with excrutiating pain in lower right back radiating into right hip and abdomen; chills fever and excessive vomiting -- thought maybe appendicitis did not know; thought I needed an ambulance as I could not even walk from bed to bathroom -- went to ER with husband - not appendicitis - told to stop the methergine (cold turkey) and sent home with some discussion to call MD and maybe "a stone"...

Finally around 3:00 this afteroon vomitting stopped, pain stopped BUT had gross hematuria --- all typical signs of passing a stone as I am told by the on-call Neuro that I called at my MD office

Well what now, is it the drugs (methergine/verapmil/excedrin) or just a common "stone' or what ...

like dealing with the clusters is not enough...

any thoughts?? anyone else ever have this side effect or experience?

All I can is Oh my God..........................read your posts and abstracts and all I can say is -- please do not let it be any of those things --

I have been tested, MRIed, CatScaned, blood work, ekgs etc over the years to check and double check for other diseases and it always came back to typical cluster headache disease..

My problem has always always been that with almost every drug given to me I have experience severe side effects some of course more serious than others but in my 20s and 30s I was inpatient every other month for something as the high dosages used to prevent clusters just wrecked havoc on my body chemistry.

My current routine (only on for 30 days) is the first time ever for methergine and adding in the small dose of verapmil --

apparently not working - clusters not controlled and now this "kidney stone" .. mind you I have no idea if one is related to the other but I have never had this happen before and with my bad history of drugs/side effects I do predict it is one of the drugs or the entire combo..

of course the older I get the more likely I am to develop any one of the cardio/vascular/ diseases as I am a smoker and excessive users of excedrin-migraine............

You know I want to get to the bottom of it and I know my MD will but the process, the tests, the time necessary and needed to figure it out -- all of this and still work -- are u kidding -- more than likely I will lose my job and then my house (won't be able to keep up with the mortgage...)

Sounds dramatic I know -- but my experiences have taught me that medical issues and treatment can easily cause these snowball effects............

I am going to get the Sansert compouned (or try) as suggested by Brew and when I am back feeling good and in more control of the clusters, I am going to put everything else on hold and find some natural alternatives..

Today was God-awful and I am really worried that it is something more serious (kidney failure or serious cardio disease)...

As one of the replies stated in your post -- "there are definitely worse diagnoses than clusterheadaches"

Thanks for the information -- I absolutely do intend on discussing all of this with MD and have already emailed her!

Dawn

Brew you are right; absolutely right -- I WILL stay positive and try not to let my mind wander over to all the negative what-ifs!!

Thanks for the reminder.
Dawn

I missed your call, however the conversation would have been similar to the above. Scary Brew! More information is all you need, and headbanger buddies.
the bb
offers still there

4 years ago I finally found the doctor that understood what we all go through. Zahid Akram is a neurologist in Hermitage Pennsylvania that has literally saved my life. I have suffered with this menace for 25+ years and was refered to him by my family doctor.  My therapy only when the beast arises is verapamil and prednisone with a script for Zomig nasal spray. Until the first 2 meds bust the cycle the Zomig allows me to sleep through the night. I know this does not work for some of you but it does for me at least for now but we all know that the "devil" never will release his grip on you. But the last 2 episodes in 4 years have been eliminated with this therapy I know when I can stop the verapamil just by the way I feel.  This episode and the last one took about 6 weeks to totally abort and I was PF for 2 years until about a month and a half ago. In therapy now and have been PF for 5 nights and days. Prednisone makes me eat like a horse but I'll put up with a little weight gain to be PF.
I love talking to this doctor and  he enjoys listening to me and sharing the stories of some of you on here. He knows my knowledge of this beast is more than most doctors know about it.  By the way the Zomig works for me in about 2 mins after onset. My only problem with it is the insurance company feels you only need 6 doses a month (idiots) I wish the CEO's of the drug companies and insurance companies suffered with these headaches they would be giving the medicine away if they did.
Just putting this out there for all may you all have PF days and nights!!!

Guiseppi wrote on Feb 14^th, 2011 at 11:01pm:

Well Joe you are right I will stockpile when out of cycle had the last batch for 2 years. Right now I am on 2 verapamil in morning and 2 in the evening 125 mg each I get some shadows but those are nothing. I posted on here a couple of years ago that I accidentally found a way to abort the attacks at night. One night while at my wits end with the pain I took off out my back door running around my yard after I stopped and was breathing heavy and my heart pounding the pain went away. This works for me its just a temporary abortive as the pain will come back in a few hours but I would run in between attacks sometimes 6 times a night until I found Zomig.  My doctor recently gave me a sample of imitrex nitrogen injection. no needle works kind of like an epi-pen just push it against your side and the nitrogen blasts it in your system pain went away in about a minute. I guess I am one of the fortunate ones on here that I have found relief for now. I wish my therapy worked for everyone that suffers from these bastiches. PF nights and days to ya