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(Message started by: svelletta on Jul 2nd, 2003, 8:58am)

Title: DHE Treatments
Post by svelletta on Jul 2nd, 2003, 8:58am
F irst posted to this board 6-17-03.  First....THANKS for all of the responses.   As I stated, my husband has had chronic clusters for about 4 years.  June 23 he was admitted to hosp. and received I.V. treatments of DHE (Dihydroergotamine), Magnesium, Depakon, and Reglan(anti-nausea for the side effects of DHE)  He had only minor side effects (leg cramps) and has had no headaches in over 2 weeks.  He was sent home on Lithium, Depakote, and Meltonin at bedtime.  Has experienced some side effects from meds, but they seem to be decreasing with time.  He seems to sleep much better, probably a combination of the meds and most definitely the absence of headaches.  
    As is the case with many of you, he had tried EVERYTHING!!!!!!  We live in OKC and he had been to family physcians, ENT's, Neurologist, you name it .  The Dr. that is treating him now is Dr. Stuart Black w/ the Dallas Headache Assoc.  He is the only Dr. who has said "we will not give up until we find a resolution for you"  He is very well versed in the area of all types of headaches and has communications with other physcians (who also specialize in headaches) accross the country.  He is trying this course of treatment and states that if not effective after a period of time, he will try a different approach, and is open to consulting with other physcians to find a resolution.  
  While being on the "drugs" is not the best, it is a blessing compared to the agony I have seen my husband endure over the years.  
    Sorry for this to be so long, but if there is someone out there who is not aware and can be helped, then it served the purpose.  Dr. Black is supposed to be the "guru" in this field.  He seems to be very well known  and respected in his field.  He is 3 hours from us, but it was well worth the drive!!!    
   Thanks for listening.......I believe there is hope out there for CH patients.......The miracle would be a CURE.

Title: Re: DHE Treatments
Post by juvy on Jul 2nd, 2003, 9:03am
Svelletta,

Meltonin at bedtime would explain why he's sleeping so well.  It's a natural sleeping herb derived from tomatoes.

I hope you find something that helps soon.  i wish you all the best.

Cheers,
Juvy

Title: Re: DHE Treatments
Post by NotH20 on Jul 2nd, 2003, 9:47am
Svelletta - I'm a DHE believer   ;D  I was put in the hospital for 6 days on the IV drip and I believe it stopped my last cycle of CH's in January, 2002.  So far I've been pain free for a year and a half!   :o

Hope your hubby continues to get the sleep and relief...

Mia

Title: Re: DHE Treatments
Post by svelletta on Jul 2nd, 2003, 10:42am
Mia.......that's certainly promising news.  Wish you continued luck.  It's really ironic, but my father suffered from these same headaches around 1960.  He was hospitalized for 6 MONTHS (home on weekends) and received injections of DHE.  He had the headaches for 8 years, almost daily.  After treatment with DHE injections he NEVER had them again.  I am praying for the same type of response for my husband.

Title: Re: DHE Treatments
Post by don on Jul 2nd, 2003, 12:22pm
My last cycle lasted almost 9 months. Day and night, no let up.

My neuro finally said fuck this, whacked me with morphine so I couldn't escape and drive home, and thru me in the hospital for two days.

IV drip of DHE and benadryll. Been out of cycle ever since.

Fuckin neuro scares me sometimes. Took me hostage he did!

Title: Re: DHE Treatments
Post by NotH20 on Jul 2nd, 2003, 12:35pm
I'm keeping my fingers crossed - my next cycle should run closer to the fall so we'll so how it goes.  I just know that I've have MANY vials of the DHE at home so I'm good to go in case the cycle starts....

1960?  I have no clue this medication has been around that long.

Now Don - don't complain - being a hostage in this particular situation was a blessing!

Mia

Title: Re: DHE Treatments
Post by don on Jul 2nd, 2003, 4:32pm
No doubt Mia.

Word of caution. I tried the self injections of DHE and it had no affect. Had to do it steady IV drip for success.

Had a couple of scraps with the beast but havent experianced a full cycle in almost 2 years.

Title: Re: DHE Treatments
Post by BonnieW on Jul 2nd, 2003, 5:56pm
We use DHE injections at home as a last resort - and they almost always work for Warren.  I hate to have to inject him, but if the CH is out of control and the oxygen is not working, the DHE seems to always help within just a few minutes.  Not sure what the dose is, I have to break open small glass ampule, and then pull the solution up into the syringe, get air out and poke.  

Title: Re: DHE Treatments
Post by Marc on Jul 2nd, 2003, 7:30pm
Bonnie,

Has Warren tried DHE nasal spray?  I haven't yet, but I just got some samples so I'm sure I will very soon.

Marc

Title: Re: DHE Treatments
Post by Bonnie on Jul 2nd, 2003, 10:10pm
We just recently heard about DHE nasal spray.  He did try Migranal nasal spray a few years ago - not a great success.  We will check out the DHE spray with the doctor the next time he is there.  Sure would be easier that using that scary syringe!

Title: Re: DHE Treatments
Post by NotH20 on Jul 3rd, 2003, 10:16am
Don - the only positive sign for me is that after I was discharged from the hospital I had 3 ch's and the DHE injections worked for me fine at that point.  Could be due to the DHE that was still in my body - but who the heck knows when it comes to the Beast.

I've got my ammo loaded and ready for the SOB to try to come back for a visit!   >:(

Mia



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