Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        Cluster Headache Help and Support >> Cluster Headache Specific >> Been in remission for 4 years
        
(Message started by: Patrick_A on Jul 3rd, 2007, 5:19pm)
Title: Been in remission for 4 years
Post by Patrick_A on Jul 3rd, 2007, 5:19pm
Hello everyone,
                       I wanted to come here and remind people how important it is to Pay Attention. I suffered from these CH's for 28 years. I discovered this site in 1997. I read about all of the treatments that people had tried. I read about the more popular and successful treatments and still didn't try these until my last cycle (2003) I finally went to my neurologist and demanded the Prednisone taper with heavy doses (960mg's) of Verapamil. Within 1 week I no longer was getting the CH's. I followed the treatment to completion and I am hear to state: I am CH free for 4 years now!
I know and understand that this treatment doesn't work for all. BUT.......if you don't try, you can never succeed. If you haven't tried this treatment, Please, Please, Please DO IT NOW!!!

Ya'll take care,
                     Patrick_A
Title: Re: Been in remission for 4 years
Post by thomas on Jul 3rd, 2007, 5:21pm
Glad you're pf and have been for so long.  I tried the pred and verap treatment, didn't work for me.  But I am having pretty good luck right now myself. ;)
Title: Re: Been in remission for 4 years
Post by MR_FLOOR on Jul 3rd, 2007, 5:28pm
Wow 4 years thats a good remission.Hope it lasts forever.




Dave
Title: Re: Been in remission for 4 years
Post by Patrick_A on Jul 3rd, 2007, 5:28pm
Thats great Thomas,I am truly happy for ya. But the message is for all those who never try anything at all other than Trex. There are successful treatments, but you have to try them to be successful!  :)

Patrick_A
Title: Re: Been in remission for 4 years
Post by Juliet on Jul 3rd, 2007, 8:10pm
Hi, I have been in remission for nearly four years now also (still touching wood!), after suffering for 26 years. The verapamil / prednisone worked for me too, with Imigran pills during an attack.

Something I really wanted to share though is about alcohol, I presume that others sufferers are affected by alcohol?.  For years medics gave me methadone injections to try and abort attacks (not that they worked).  I just want to warn everyone to AVOID the ALCOHOL SWABS they give you first, including when having blood tests.  It took years for me to realise that they were prolonging the attacks (up to 55 hours on one horrid occasion**).  When I told the neurologist I was seeing about the alcohol swab connection she was amazed that it hadn't occurred to her too.
With my CH history I was given the hope that as I approached menopause that the clusters may cease, and with the 4 year remission it now seems could be true.
For any female readers still suffering, I hope that is the case for you too!.

** Read a response, and yes, 4 different neurologists over the 26 years confirmed the CH history.  Family wanted me hospitalised as I was passing in and out of consciousness probably from overdoing the imigran which wasn't working anyway. I couldn't face the hospital system. Instead of several bouts during the night they just rolled into one hell ride day and night, hence I wanted to warn others about the dangers of alcohol swabs!.
Title: Re: Been in remission for 4 years
Post by Jonny on Jul 3rd, 2007, 8:20pm
Where have you been for four years?

The HA's back?
Title: Re: Been in remission for 4 years
Post by UN solved on Jul 3rd, 2007, 8:33pm
Glad to hear that you got some success Patrick ! Hope it last for a long time!

Juliet, alcohol swabs and CH ?? omg ...  ::)
A '55' hour cluster attack ?? omg   ::) .. Ridiculous !! There's NO WAY you have CH if you think a hit lasts that long !!   ::)  I don't think anyone could survive through a 55 hour hit !!   ::) ::) ::) ::) ::) ::) ::) ::) ::) ::) ::)

Juliet - you said your 'clusters' stopped w/ menopause ?  You mean your MIGRAINES stopped !! It wasn't clusters dear !!

It's getting DEEP in here !!

Goodluck people !! ( Some of you are going to need it! )

UNsolved (  ::) )
Title: Re: Been in remission for 4 years
Post by Lotus on Jul 3rd, 2007, 10:10pm

on 07/03/07 at 20:10:57, Juliet wrote:
Hi, I have been in remission for nearly four years now also (still touching wood!), after suffering for 26 years. The verapamil / prednisone worked for me too, with Imigran pills during an attack.

Something I really wanted to share though is about alcohol, I presume that others sufferers are affected by alcohol?.  For years medics gave me methadone injections to try and abort attacks (not that they worked).  I just want to warn everyone to AVOID the ALCOHOL SWABS they give you first, including when having blood tests.  It took years for me to realise that they were prolonging the attacks (up to 55 hours on one horrid occasion**).  When I told the neurologist I was seeing about the alcohol swab connection she was amazed that it hadn't occurred to her too.
With my CH history I was given the hope that as I approached menopause that the clusters may cease, and with the 4 year remission it now seems could be true.
For any female readers still suffering, I hope that is the case for you too!.

** Read a response, and yes, 4 different neurologists over the 26 years confirmed the CH history.  Family wanted me hospitalised as I was passing in and out of consciousness probably from overdoing the imigran which wasn't working anyway. I couldn't face the hospital system. Instead of several bouts during the night they just rolled into one hell ride day and night, hence I wanted to warn others about the dangers of alcohol swabs!.



Hello Juliet,

I am sorry you have had 26 years of headaches but what you have posted are not accurate for CH.

1- Imigran doesnt work for CH, it takes too long.

2- I was trained in New Zealand and graduated from Auckland Medical School and worked for 2 years in Auckland, Greenlane and Middlemore Hospitals, I know the system there: they dont prescribe Imigran pills for CH, the only treatment approved in New Zealand for CH is Imigran injections as per the Pharmaceutical Authority. Imigran pill is only authorised for migraines.

3- Medics dont give anyone methadone injections for headaches. In fact they dont give you anything at all they only take you to the hospital. The hospital doctors dont give methadone injections for headaches either, no matter what kind. They may give morphine and pethidine but never methadone. Legally they are not allowed to give methadone for headaches.

4- You have seen 4 neurologists who confirmed diagnosis of CH for 26 years and no one prescribed you imigran injections or oxygen ? Would you be able to share the names of those neurologists? I do know most of the specialists in Auckland, many of them were my teachers. I would like to know which 4 are so incompetent !

5- CH attacks dont last 55 hours. Even back to back ones dont last that long or you would , literally. be dead. Do you know that during a CH attack your blood vessels in your brain swell up to 20 times their normal sizes and the trigeminal nerve is physically being squashed by this? For that to have lasted 55 hrs your blood vessels would have burst, you would have died from the brain haemorrhage and your nerves would be permanently damaged.

6- Menopause does not often bring along a reduction of CH. In fact it has been noted to bring on the onset of CH in some women. Please take a look at the statistics, its not that uncommon for women to start CH later in life, in their 40s and 50s, presumably coinciding with their menopause. This is in contrast with CH in men, where it is more common for them to start in their younger years.

7- Your suggestion that alcohol swab can prolong or trigger a CH attack is totally unsound both medically and scientifically. Alcohol consumed orally is absorbed into the bloodstream and acts as a vasodilator, hence triggering and worsening CH. The alcohol from the swab is only topically on your skin, it has no contact with your blood and therefore can not affect blood vessels in any way, shape or form. To say that a neurologist agrees with you on this is totally unbelievable. Would you be able to share the name this neurologist too ? There are not that many lady neurologists in Auckland, there is a good chance that I might know her personally ???

8- Lastly I am rather concerned about your "passing in and outs" during a CH attack. This is not typical of CH at all. If this is due to "overdoing the imigran" then its even more alarming. If the verapamil and prednisone worked so well for you why would you need to
"overdue " imigran pills ? Furthermore I have not heard of imigran pills causing a person to "pass in and out of conciousness" ever !

All in all, I dont know what type of headaches you had but they sure dont sound like CH to me. As Unsolved suggested they are more likely to be some form of migraines. You can have migraines that come in cluster but they are most definitely not clusterheadaches. The two are very different !

I am glad that you are in remission now but if your headaches ever return I hope that you will go to a good neurologist who will get the diagnosis right and the correct treatments for you. PM me if you like and I can give you a recommendation for a good neurologist in Auckland who is experienced with headaches.

Best wishes


Annette
Title: Re: Been in remission for 4 years
Post by Patrick_A on Jul 3rd, 2007, 10:32pm

on 07/03/07 at 20:20:31, Jonny wrote:
Where have you been for four years?

The HA's back?


Hey bro, No, No CH's in 4 years. I just come back and touch bases from time to time.
Have a good day!  ;)

Patrick
Title: Re: Been in remission for 4 years
Post by BlueMeanie on Jul 3rd, 2007, 10:55pm
Hi Patrick,

Glad to hear you've had such great success and hope it stays that way. I understand your willingness to share your success with the Verapamil and Prednisone treatment and know, for some, it can stop CH attacks through a cycle. But I don't believe that treatment is what is allowing you to be PF for 4 years. Its' luck of the draw, the Beast is tricky like that sometimes.
Title: Re: Been in remission for 4 years
Post by Patrick_A on Jul 3rd, 2007, 11:01pm
I am sorry Blue, But I don't believe that. As soon as started the Prednisone and Verapamil my CH's totally went away and never came back.
I never said it works for all, but there is so much information on this site and so many great people willing to share their sucesses that surely someone will have the treatment for you.

Patrick  :)
Title: Re: Been in remission for 4 years
Post by BlueMeanie on Jul 3rd, 2007, 11:07pm
You could be right Patrick, but I've never did Prednisone and only tried Verapimil close to 20 years ago. Since finding Trex, I've never did any other meds and its' now been over 3 years PF for me. ;;D

Anyhow, glad your PF. That's all that matters.
Title: Re: Been in remission for 4 years
Post by Kris_in_SJ on Jul 4th, 2007, 3:21pm
Hi Patrick,

I'm happy for your long remission.  I'm entering year 4 of a remission myself.   I also do the Pred/Verapamil treatment - every 5 years when my cycle hits.  Yes, it works to knock back the clusters within a short time, though I shadow off and on for the 10 to 12 weeks of my cycle.  Then several months of weaning off the Verap.

However - it's certainly not a permanent treatment.  It's just the form of treatment that works best for me when a cycle hits.  The Beast still comes calling every 5 years.  Here's wishing for more years of remission for you.

Hugs,

Kris
Title: Re: Been in remission for 4 years
Post by horsegirl on Jul 5th, 2007, 10:09am
damb, i was sure hoping about the menapause thing.but i do the verap,and pred to realy helps,i think my ha are gone and im tapering off the verap but i was planning on being done tappering in a week,or so whats this several months? am i doing it wrong.i better look up the post on getting off verap
Title: Re: Been in remission for 4 years
Post by horsegirl on Jul 5th, 2007, 10:16am
oh and hey,alcohal awabs,silly girl,thats realy reaching,and i thought i was always analizing to much on triggers,
Title: Re: Been in remission for 4 years
Post by Lenny on Jul 5th, 2007, 10:47am
That's great that you have been 4 years PF (and still counting). As for myself,i never had such luck (but i would get a break from the beast while taking it,but as soon as i was done with the treatmant the beast would always make up for my breif vacation).If i recall correctley and it depended on the which doc was treating me at the time,it was anywhere from 5-10 day's(i dont know about others out there)my memory has been very foggy the past couple of years.Alot of people say it comes with age,i dont buy that (i wonder if its from all the meds and the c.h.) if you think about it each and every time that we get a visit from the beast(dont you think that is some type of trauma to the head)??Especially getting hit over and over day in and day out(have they done any kind of study on this?) my doc told me that it's the age thing (IMHO)i think thats bullshit(then again who am i to disagree with the doc)just a patient :o.....PFDAN to all Lenny
Title: Re: Been in remission for 4 years
Post by Kris_in_SJ on Jul 5th, 2007, 3:05pm
With regard to tapering off Verapamil, Horsegirl ...

It seems I only had a real problem last cycle.  I decreased by 120 mg every week, but it took forever to get below 240mg/day without shadowing.  Took a total of 5 months to stop totally.  Some people here (myself included) believe that Verapamil and other prevents can actually lengthen your cycle.  On the other hand - I couldn't survive a cycle without it.

And, no, menopause won't make them go away.  Trust me on that.

PF Wishes,

Kris
Title: Re: Been in remission for 4 years
Post by diti on Jul 5th, 2007, 3:07pm
Done the Prednisone and Verapamil thing 5 years ago. Thought the BASTARD was gone for good until about 8 weeks ago now he is back with a vengeance. At least this time around I found this web side. It really helps a lot having all the info and other people’s experiences to learn from.
Hope he will never come back for you. And lots of PF time for all the others.

Diets ;)


Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1!
YaBB © 2000-2003. All Rights Reserved.