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        New Message Board Archives >> Medications, Treatments, Therapies 2003 >> Now 3 cases OK with paroxetine
        
(Message started by: Riccardo on Nov 27^th, 2002, 5:17am)

Title: Now 3 cases OK with paroxetine
Post by Riccardo on Nov 27^th, 2002, 5:17am

I would add an experience (here in Italy) about the cycle breaking of CH. I would be very happy if you tell me your thoughts about it.

I agree with you, seems impossible, but I hope that Riccardo cannot be confused with a snake-oil vendor, or a complete moron.... ;D
I am pain free from 4 days!!!!! at the start of cycle!!!

This suggestion cames from a GP in Italy, is not my own idea.

We made a trial (not a regular one, obviously....between patients):

3 patients:
1 37 y.o. /10 years of CH, episodic, male- no other meds
1 49 y.o. /24 years of CH, episodic, male- 480 mg/die Verapamil (for the record.... I am this one.......)
1 40 y.o. /14 years of CH, episodic, male- no other meds

Timing: start of cycle (but one did also the trial last year in the middle, with the same results)

Medicine:
20 mg/day of........... Seroxat (paroxetine, in US the brand name may be seroxatin) /// Caution! NOT PROZAC!!! has a different molecula!///

Effects:
After the first day (ONE PILL!!!) the cycle has been breaken down! All the three patients have not had an attack in 5 days (3 patients) and 2 months, until the end of cycle (3rd patient, last year). This seems weird to me first, but is the pure truth.

This is what I call the SEROTONIN SHOCK. A dose of an antidepressant that "block and move" huge quantity of serotonin in different ways than the usual.

E.G.: the classical tricyclic antidepressants block primarily the uptake of norepinephrine and also, to varying degrees, the uptake of 5-HT. The paroxetine is, on the other side, the most potent inhibitor of 5-HT uptake, This can cause a SEROTONIN SHOCK that break the cycle.

I'm not a doctor, nor I want to be a professional, but 24 years of CH give a bit of knowledge..:-)

What I want to say is that we three (the patients in trial) haven't had only ONE attack after the FIRST pill of seroxat! And we experience the "shadows" anyway (may be more than the usual and distributed randomly in the 24 hours, like the tricyclics do, but NO PAIN!!!)

Please, don't ignore this post. If you want to try, it costs nothing (just a box of seroxatin) and you can try it for 2 or 3 days. If it functions, it does in this time. You don't experience the real effects of seroxatin, because it, for depression, start to work in one week.

Please, ask your doctor!

Title: Re: Now 3 cases OK with paroxetine
Post by Bob P on Nov 27^th, 2002, 6:27am

In the US, the trade name is Paxil.

Anyone else taking Paxil and skipping cycles or not, breaking clusters or not?

Glad to hear you're not hurting my friend.

Title: Re: Now 3 cases OK with paroxetine
Post by Riccardo on Nov 27^th, 2002, 6:32am

Thanks Bob.
And yes, I don't believe to this.... but I'm completely pain free. Yes I have many shadows but.... who cares?

Seems impossible that a pill, a simple, normal, "usual" pill can do this, but 3 people!

I hope that someone of you will try it.

Title: Re: Now 3 cases OK with paroxetine
Post by JanB on Nov 27^th, 2002, 7:01am

I'm not sure if this is along the same line as Riccardo's post but I will post anyway.................

I was due for a round of CH starting in March this year. I've had CH for 34 years now and my cycles have gone from about every 6 months (started about 12 years old) to about every 2 years now.

I always believed they had something to do with serotonin levels so this time I thought I would try something different. I had been reading about 5-HTP so in March when they were supposed to begin I started taking one 50mg capsule before bedtime. I noticed I was sleeping better and the CH didn't start until May. I kept taking it and noticed that most of this cycle was pretty manageable for me.

Usually when I'm in a cycle I have about 4-6 weeks that I am terribly depressed and not sleeping more than an hour at a time during the night. That period for me seemed to be shortened to about 2 weeks in October and I didn't seem to be so depressed throughout my cycle this time. Plus I had a whole month off in August when I didn't have CH which is unusual for me.

The Oxygen worked much better for me this time and I was able to cut the Imitrex down to 1/3 of an injection at a time, which was great because my Insurance company decided to limit my supply of Imitrex this time.

I'm not sure if it was the 5-HTP or not but I didn't use any other meds because I haven't had much luck with preventatives over the years. I do know I felt better and was able to deal with this cycle better.

My cycle is winding down now so I will be Ok for another couple years but I think I will try the same thing next time and see how it goes.

I thought 5-HTP was discussed on the board a long time ago and didn't know if this was along the same line or not.

Title: Re: Now 3 cases OK with paroxetine
Post by Bob P on Nov 27^th, 2002, 9:18am

Now that's confusing!

You get hit about every 2 years.
Your cycle didn't start until May,
was shortened to 2 weeks in October,
and you didn't have any CH in August.

Huh?

Title: Re: Now 3 cases OK with paroxetine
Post by JanB on Nov 27^th, 2002, 9:59am

No, sorry that was so confusing.........I do get hit about every two years. My last cycle started in May of this year (about 2 months behind schedule) and has lasted since then. I didn't have any in August, they started up again in September. I usually have a 4- 6 week period within the cycle where they are terrible. (Don't leave the house) This time it was shortened to about a 2 week period in October. The rest of the time I have been able to do pretty well with Imitrex and Oxygen. My previous cycle before this one lasted a year but I think this one is winding down and it's been about 7 months.
Also the depression wasn't nearly as bad this time for me.

Title: Re: Now 3 cases OK with paroxetine
Post by eyes_afire on Nov 27^th, 2002, 10:11am

I have tried treating cluster headaches with Paxil. This experience is going to be kinda hard to believe. I'm very reluctant to talk about it here (which is why I never have before). Keep in mind that not all drugs react the same way with everyone.

I was initially misdiagnosed with migraine and sent to a psychiatrist. Tried nortryptaline, serzone and zoloft with no effect. Then the psychiatrist puts me on Paxil. After a slight time delay the cluster headaches went away. So the psychiatrist is like: there ya go, Paxil works. So I continued taking it year round (also to help with a sleeping abnormality... but that's an entirely different fiasco). Wrong. Probably the cycle was going to end anyway, but of course at the time I didn't know about cluster headaches. So when next cycle comes around... CRUSH as per usual. Paxil was having no effect.

So as recently as July 2001 I decided to discontinue the Paxil. I was in for quite a shock. I developed a physical dependence to Paxil. I know this is hard to believe but this happens to a small percentage of users (GSK was recently ordered to remove from thier advertisements that Paxil 'is not habit-forming'. There are lawsuits against GSK). I tried tapering twice, but I couldn't do it without experiencing the symptoms of dependence. So I did an internet search.... and found there are others like me who ended up dependent to Paxil. My doctors would not acknowledge that such a thing could happen... therefore I did something kinda risky. Cold-turkey. Since tapering produced the same dependence symptoms and doctors did not want to hear me, I decided to do it my own way, which was cold-turkey.

Here are the symptoms of dependence I experienced. I am not saying this to scare people, but this was my experience. The total withdrawl lasted approximately 4 weeks (some people are not as lucky):

1. Extreme constant dizziness. Finally by the third week this started to subside. Walking was a challenge. I had to be driven to work when I could go. Lucky for me that work was rather accomodating. It felt like hell. Dizziness that never ends. 4 weeks is a long time to be constantly dizzy.

2. An unreal feeling. I can't explain this. Also fatigue.

3. Electric zaps in head. These were most bothersome during the first 2 weeks. Zap, zap, zap a couple of times per minute. It made sleeping difficult.

4. Problems sleeping. It absolutely wrecked my sleeping cycle. Couldn't sleep during the first week.

By week number 2 the withdrawl got really bad for a couple of days. My friend (who was keeping an eye on me) was very close to having me hospitalized. For a couple of nights I developed uncontrollable shakes, nausea, and mental confusion. Then a night of projectile vomiting, vomiting like never before (the bathroom was a disaster). And for the first time ever, I was physically unable to call in sick to work. I tried making it to the phone 3 times, but each time I never made it and woke up in a different place on the path to the phone.

Finally, after 4 weeks I felt normal. 4 weeks of hell. Why am I telling y'all this? I don't know ???. I guess I'm concerned. I'm not trying to scare anyone. Most people don't have this experience with Paxil... but I'm not the only one who has experienced this. If you ever want to stop taking Paxil: Taper off of it. What I did was dangerous. However if you find you are experiencing some of these symptoms EVEN WHILE TAPERING, know that you will be in for a rough ride. I experienced withdrawal symptoms even during my first 2 tapering attempts. That's when I did a search, realized I was bad-fucked, and decided to just go cold-turkey.

I will never, ever, touch Paxil ever again. (hmmm... never say never, but it didn't help my CH... so... NEVER)

Title: Re: Now 3 cases OK with paroxetine
Post by Drk^Angel on Nov 27^th, 2002, 2:27pm

The injunction against labeling Paxil as non habit forming has been lifted by the court, because according to FDA rules (a drug is only considered habit forming when the effects of the drug are such that a psychological dependence is possible), Paxil isn't habit forming. The FDA and GSK have admitted that Paxil may cause physical dependence, but according to the FDA, all drugs have the ability to cause physical dependence, and therefore pharmaceuticals are not required to disclose if their meds may cause physical dependence.

PFDAN......................................... Drk^Angel

Title: Re: Now 3 cases OK with paroxetine
Post by eyes_afire on Nov 27^th, 2002, 4:32pm

Thanks for the update Drk Angel. You are correct, the ruling has been revised. GSK has agreed to CEASE making the following 2 claims:

"may cause mild, usually temporary, side effects in some individuals"

"Paxil has been studied both in short term and long term use and is not associated with dependence or addiction"

There is a difference between the terms addicition and dependence. (Somebody correct me if I'm wrong) Addiction (and also 'habit-forming') is the more properly used term when dependence upon a substance also involves psychological rewards or behavioral 'drug-seeking'.

I will reiterate: What happened to me will probably not happen to most other users. I only provide this info as the fair warning (that I wish I had) of what can happen. The assumed reason why Paxil is more likely than other SSRIs to cause this problem is due to it's shorter half-life in the body.

For more info about the major points of complaint against Paxil, follow this link. There are also numerous personal stories of the effects of Paxil (click on 'View Current Signatures').

http://www.petitiononline.com/oky71/

My main beef and bitterness >:( >:( >:( that has resulted from this (and this is only MY bitterness, I don't expect everyone to empathize with my experiences):

1. I went to many uneducated 'doctors' (including 4 specialists) who were not only unable to properly diagnose cluster headaches, but also unable to properly diagnose migraines. I even went to one neurologist who suggested that I stop taking Paxil WITHOUT tapering. (I fired him >:()

2. The psychiatrist (who shall for now remain nameless), put me on a medication, without informing me of the potential for the HORRIBLE physical dependence, based upon a misdiagnosis >:( >:( >:(.

3. (This 3rd point is more visceral and emotional, based upon my personal experience with both substances, not based upon logic, so I'm not going to defend what I'm about to say...) Why psilocybin is a schedule I controlled substance but yet Paxil is readily prescribeable (is that a word?) is beyond my comprehension. I'm NOT saying that Paxil should be a controlled substance. I'm saying that the scheduling of substances is not entirely due to the government wanting to protect people.

Moral of the story?: Get a good neuro knowledgeable about cluster headaches. Don't settle for a misdiagnosis. Don't take cluster drugs for migraines and don't take migraine drugs for clusters (uh... unless they overlap). Know your drugs (whether they be legal or illegal, don't rely on everyone else for protection).

I'm sorry if I upset or scared anyone. This topic is an emotional one for me because of the hell I went through. This does not happen to most Paxil users.

Title: Re: Now 3 cases OK with paroxetine
Post by Drk^Angel on Nov 27^th, 2002, 5:51pm

There's a very good reason why you and many others were not warned of the dependence factors... When it came out, Paxil was meant to be a wonder drug, and wonder drugs cannot be bad, so anything that doesn't sound good is conveniently buried. They're not intentionally trying to harm patients. It's just that everyone wants the wonder drugs to succeed. They make the drug as perfect as they can, with as few other effects as possible, then they compare all other effects to placebo, list it in the small print, or in cases like dependency, leave it out all together, because the FDA claims all drugs carry a risk for dependency. The good news is, Paxil CR may give most people the good effects of the drug, and help limit the bad effects, but that remains to be seen.

PFDAN................................... Drk^Angel

Title: Re: Now 3 cases OK with paroxetine
Post by Riccardo on Nov 28^th, 2002, 12:46am

Hey, hey...wait.... ;D

I didn't say that a long cure with Paxil is the solution. Never said. I know perfectly that is a not too good drug!

The effect, in our cases, comes after 1 or 2 days we take it (I know seems impossible....). The "standard" effects of Paxil as antidepressant, and the dependance, comes after 7 days.

Just try it for 3, 4 days. If the shock doesn't happens.... OK quit Paxil.

Ciao friends

Title: Re: Now 3 cases OK with paroxetine
Post by dannyboy on Nov 29^th, 2002, 8:56am

The Holy Lizard speaks...

Title: Re: Now 3 cases OK with paroxetine
Post by eyes_afire on Dec 1^st, 2002, 9:40am

Riccardo, sorry if I got a little carried-away with your topic here ;D . Perhaps I misunderstood a little bit. It sounds like you're trying to do what some of us try with the shrooms: 'shock' the serotonin system into working properly. I hope it works for you. I don't think I could ever get myself to eat Paxil again, but please let us know if this helps.

Title: Re: Now 3 cases OK with paroxetine
Post by Riccardo on Dec 1^st, 2002, 1:20pm

No probs, eyes,
I understand perfectly that a med that has a bad effect can "upset" the victim.

At this point (7 days) I'm tapering to 10 mg/day to Paxil. No side effects..... but two KIP 7 attacks...... this seems to demonstrate that it is the responsible of my "good time". I will continue at 10 mg if the attacks remains in this boundary, otherwise I will return to 20 mg.

And yes, I think that the Serotonin shock of shrooms is very near to the Paxil.

Let's hope.....
Ciao

Title: Re: Now 3 cases OK with paroxetine
Post by lrobb98 on Dec 1^st, 2002, 9:44pm

Antidepressants do occasionally help clusters(even good old Elavil, or amitryptylline). However, unfortunately they usually do not, or wear out very quickly. L.Robbins M.D. http://www.headachedrugs.com

Title: Re: Now 3 cases OK with paroxetine
Post by Riccardo on Dec 2^nd, 2002, 12:41am

Lrobb, you, and Doc Robbins, are talking about tricyclics antidepressants.

Paxil works only (and heavily) on the 5HT receptors of serotonin. Is very different.

Title: Re: Now 3 cases OK with paroxetine
Post by Bob P on Dec 2^nd, 2002, 2:01pm

Psst, Riccardo, lrobb is Dr. Robbins (Lawrence Robbins = lrobb).

Title: Re: Now 3 cases OK with paroxetine
Post by Riccardo on Dec 3^rd, 2002, 1:21am

OOOOPPPPSSSS!
Now I have to start to call me PRRR! (PenteneRo RiccaRdo....) ;D

These nicks made me a bit confused.... may be the Paxil.... ;D

Anyway, I talked about the "shocking" effect of Paxil, not its "normal" and wanted effects. Moreover, it has had good effects with me with the first assumption, and this means that's not the usual antidepressant effect.
I think (like another wrote here) that "MY" Paxil effect can be compared with the shrooms therapy.

Thanks Bob..... and ciao Lawrence

Your PRRR..... ;D

Title: Re: Now 3 cases OK with paroxetine
Post by Riccardo on Dec 6^th, 2002, 1:57am

Just an update...

3rd week in cycle, tapered Verapamil to 360 mg and Paxil to 5 mg (practically nothing...)

In the last 4 days just ONEattack UNDER KIP 7.

Happy for me and for the cure
Ciao friends

Title: Re: Now 3 cases OK with paroxetine
Post by ZAIRA on Dec 6^th, 2002, 6:01am

YYYYEEEEEEAAAAAAAAAAA...

I am happy for you...my PINE TRUNK ;D...

Love,

Zaira

:-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-* :-*

Title: Re: Now 3 cases OK with paroxetine
Post by eyes_afire on Dec 6^th, 2002, 5:41pm

Wow Riccardo, that's interesting. I hope you continue to have success with your treatment. Keep on giving us some updates periodically.

Title: Re: Now 3 cases OK with paroxetine
Post by Riccardo on Dec 10^th, 2002, 11:23am

update....

Now I'm on 360 mg Verapamil, ZERO Paxil.

Only ONE attack in the last 7 days!!!!

Still shadowing, but only shadowing..!!!!
YIPPEEEE!!!!!

Title: Re: Now 3 cases OK with paroxetine
Post by Riccardo on Dec 16^th, 2002, 1:31am

Fourth week update:

I have tapered to zero Seroxat last week! Still on 360 mg of Verapamil
I have an attack ...KIP 7... EVERY week!!!!
(I usually got 4 attacks during the night and one in the afternoon, all at KIP 10)

The friend of mine that is doing the same cure, is at one attack per day, (and used in 4 weeks four Imigran boxes!) He is used to have 6 attacks per day, all KIP 10.

I think that was a good try (I could cope with it for the 3 months to the end of cycle..... and .... may be..... all the life long :-) )

Ciao friends

Title: Re: Now 3 cases OK with paroxetine
Post by pinksharkmark on Jan 1^st, 2003, 9:44pm

Riccardo, this is very interesting. I wonder if it really is due to the sudden shock to the serotonergic system? It makes me wonder if it would work better if, instead of doing it every day, a clusterhead was to take it for a single day or two days, then stop completely, wait a week, then take it for a day or two, etc. thus presenting a series of new "shocks" to the system. Taking it for only a day or two might not be long enough for any dependency problems to develop in the week-long "cold turkey" periods between doses. A physician should be able to say for sure.

I'm not suggesting YOU try it if you have your Beast under control now with verapamil... "if it ain't broke don't fix it"... it's just a thought that came to me based on some reports from those who have taken psilocybin on the same once-a-week schedule.

pinky

Title: Re: Now 3 cases OK with paroxetine
Post by Karla on Jan 2^nd, 2003, 9:05am

Ricardo, I am so happy to hear that you are having some sucess and pain free days! This is wonderful news. Also wanted to warn people as long as Eyes brought it up. Effexor, an antidepressent, will have withdrawl symptoms as well. If you search the internet you will find many victims with the same story as the paxil users. My dr. never warned me either and I am stuck on effexor because I can't make it through the withdrawls. Just wanted to warn people since drs. do like to try antidepressents for ch.