Not trying to be a 'downer' here or to 'bash' any meds at all, but I wanted to make sure others that use DHE-45 fully understand that this IS a very powerful medication and the list of side effects on reputable sites are REAL and can be life threatening.

Despite my username, I currently use DHE-45 IM injections (1mg twice per day) in hopes of preventing cluster attacks. This often works (but is NOT recommended for long term use) as this can (and with long term use probably will) lead to Coronary Artery Spasm's, Fibrous Thickening of the Heart Valves, Angina (chest pain), Constriction of Blood Vessels of the Extremities, Abnormal Heart Rhythm, and possibly 'cardiac events' or heart attacks.

I post this because I may be at the end of another rope (my DHE-45 life line is about to be cut) as long term use of this has caused 40-50% blockage of my heart and use of DHE is now causing severe chest, neck, and jaw pain, along with tingling and BURNING of my fingertips, palms, and shoulder blades. (It's SQUEEZING my heart until it is in spasms)

I know we all "....Gotta do what we gotta do..." when dealing with cluster headaches, but please be careful & at least be aware of the meds you take and their possible side effects. Don't just take my word for it, look it up, research it, and get to really know about the meds you take ... whatever they may be.

Good Luck

I4B

If you take DHE-45, please research it. You can start here... START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Damn I4B...I'm sorry you find yourself in this squeeze...literally. Sending positive vibes your way hoping you can find another avenue of treatment. Here's a link to a thread about "ketamine" one of the upcoming "when all else has failed" meds":

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This is a treatment Bob Johnson pitches now and then, it's cheap, might also be worth looking into:

Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------


Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Joe

So sorry to hear that you are going through all this.  Hope you will be on the mend soon for your heart and ch.

Thanks (Joe [linda?] & Karla) for trying to be helpful but I'm a former patient of Dr. Todd Rozen (when he was at MHNI) and I've already tried Zyprexa back in 2003 or 2004 and it just PO'd 'The BEAST', attacks became more frequent and much more severe quickly.

In my case, the time for using vasoconstrictors (DHE, Triptans, etc) are going to come to an end and a whole new era of suffering shall begin.   :(       

I4B

Imitrex4Breakfast wrote on Nov 6^th, 2013 at 3:54am:

Thanks (Joe [linda?] & Karla) for trying to be helpful but I'm a former patient of Dr. Todd Rozen (when he was at MHNI) and I've already tried Zyprexa back in 2003 or 2004 and it just PO'd 'The BEAST', attacks became more frequent and much more severe quickly. In my case, the time for using vasoconstrictors (DHE, Triptans, etc) are going to come to an end and a whole new era of suffering shall begin.   :(        I4B

Don't like the sound of that. :-/

Joe

Sorry to hear that you're dealing with all that you are, I4B. This is what bothers me sometimes more than the pain about this affliction...

It just really irks my ass that Clusterheads are misunderstood, generally rarely empathized with, and often written off as the pharmaceutical companies see little financial benefit in researching and developing anything SPECIFICALLY designed to help with Cluster Headaches. Instead, we're left with a bunch of borrowed drugs that may or may not help, but more likely will do more harm than good in the long run... because they were never designed and intended to be used for CH, period.

Meanwhile, doctors, drug companies, and even the general public seem to chalk it up to being "all in our heads." After all, "it's just a headache. How bad can it really be?" I mean, no, we're not dying from this. But, the hand-me-down drugs are killing us along with the stress of such a misunderstood and PAINFUL affliction, leaving us with nothing but fear and helplessness.

Irks my ass.

Truly hope you find relief, my friend!

Anthony

More news about DHE and side effects that I am currently having. Hours after an IM injection of DHE-45 (1mg), my stomach began to cramp, within a few minutes, my stomach began to bloat, then I rushed into the bathroom and had a very, very bloody stool. (Nasty, I know. sorry). I saw a GI specialist in the hospital, had all the tests, and the results are: THE DHE-45 IS ALSO DESTROYING MY LOWER INTESTINES AND COLON. Almost the same thing going on in my GI tract as is in my heart. The DHE is constricting down so hard on it, it's causing it to spasm, loose the oxygen and blood, and is killing the soft tissue. Scopes and biopsies were performed TWICE and the surgeon says with 100% confidence that it is the DHE causing internal permanent and irreversible damage  :( . He also says that I should find a replacement med for the DHE asap AND he also knows about myself and CLUSTERS, so he apologizes to me for not being able to recommend a replacement. He said I'm "...Stuck between a rock and a hard place".  Today was my 5th time seeing this doctor in the past 12 month, but only the 1st time of getting all the results. Before he just led me to believe that I had a large internal hemorrhoid (Even though I knew that was NOT causing this AMOUNT OF BLOOD loss 

In conclusion: After heavy use of DHE, it is squeezing down on my internal organs & arteries hard enough to damage, scar, and kill them.

I sure hope you're having a better time than I've been having recently. THIS SUCKS (the life right out of me) !!

I4B  (NEEDS A NEW DRUG AND NEEDS IT QUICK!)

PS> Again, they say that CLUSTERS WON'T KILL YOU ---> I STRONGLY DISAGREE !!

I4B,

Man, I feel for you. It's bad enough dealing with the beast itself, but you're catching it from all angles!

I'm sure you've probably posted on the subject somewhere, but have you already tried the D3 regimen and had no positive results? Did you have the 25(OH)D tests, and if so, what were the results? Were you already in the therapeutic range and still getting hit? I can't say for sure whether or not definitively that the D3 is the reason for the break I'm getting right now, but I'm hoping it is since I'm working on a 4th PF day today. I'm currently waiting on my 25(OH)D test to get here so I can find out where I am, myself.

What about "busting?" I didn't want to resort to "busting," but here recently I was seriously considering that "alternative." It certainly sounds like, if it worked for you, it would be safer than the DHE.

I wish I could offer more than I can. As I said, the beast is enough to drag a man (or woman) through the dirt and then some. What you're dealing with is downright ridiculous, and I still blame the money-grubbing pharma companies that could care less about developing anything specifically for clusters and even remotely "safe" for us to continuously use!

PF wishes, bud! Hang in there.

I4B - Thanks for the history, and the warning.  As someone who uses Migranal Nasal Spray regularly as a preventative (although now re-thinking!) - I'm curious how long you've been taking the injections twice a day.  I've been pretty regular on it for a while now (nasal) - but it's actually stopped working, so I think I have to switch it up and get on a regimen again (Verap, etc)

Before now, I thought I was managing the attacks 'ok' with rotating between DHE-45 IM injections daily (for about 4 years), then when the attacks starting to break thru anyways, I'd get Solumedrol injections at the ER and that would give me a small break before restarting the DHE-45. After doing that a few times, I'd go into the hospital for IV Histamine infusions (about every 8-10 weeks) which usually worked (stopped & prevented) for several weeks, then the process would slowly start all over again, needing 1 DHE injection every other day, then daily, then twice a day .... and back to the beginning. It's been a nasty circle, but I'm chronic and did whatever I thought I had to do. I've been doing this looping cycle to try to prevent as many attacks as possible for several years. The histamine has failed and the DHE and now IMITREX TOO is killing me (Coronary artery spasms and START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE).
Going to Chicago to seek help, then Michigan if necessary. Louisville said NO for me to try the VNS.

I didn't think I'd need to try to D3 ... but I do have all the info and WILL be doing that to see if it helps. My D levels were low last time checked and I take 50,000 units of D3 once a week (for months with no change in cluster routine). Now I'm desperate and wish I wouldn't have waiting so long to try this.

I did try busting (years ago) but I screwed up the 'protocol' by not fully detoxing from the cluster drugs mentioned. I only dosed once too and was right back to using the same ole meds. It's hard to NOT use an injection to STOP THE MADNESS when it's sitting there so close and I'm screaming my head off again. I also need to give this a REAL CHANCE. The ONLY way I'll be able to successfully detox and give this a fair shot is to get away WITHOUT THE MEDS and 'scream it out' before (and probably after) busting again. (Not to mention I need to get more medicine to try this too, which is not so easy around here. I don't know ANYONE who has a clue about where to obtain this. I've been asking for awhile now)

Heading to Chicago and now back to using Imitrex4Breakfast (lunch & dinner too) even know it's killing me too ... hoping it's a little bit safer than the DHE is and I can make it until I find something else to STOP and preferable PREVENT the attacks. I need to go to BFE with only busting meds and scream it out for 10 days or so. It's almost 'do or die' time.

I4B

Hey bro,

How you been holding up? Any success finding some relief and/or something that works aside from the DHE or Trex? D3 regimen? I know you were going through some rough times with the DHE's side effects from prolonged use, if I remember correctly.

I've been off of the board quite a bit lately as I've finally been enjoying weeks (nearly a month) of relief. No visits from that evil S.O.B. And, both my sanity and my pocket are grateful, that's for sure.

Anyway, just wanted to see how you're holding up, man.