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So I think I found something that helps... (Read 8807 times)

Ungweliante

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So I think I found something that helps...
Oct 10^th, 2008 at 3:21am

Hello everyone!

Several times before I've said that I don't get any respite from anything else than steroids. Not oxygen, not triptans, not RC seeds, not magnesium and so on. I've also been suffering from these headaches for a year now, so there's the official chronic status.

Last weekend I had a ongoing headache for two days, so I finally decided to try a NSAID to cure it, 600mg of ibuprofen. It sure took the pain away but also morphed the CH. I've been getting two hits per day for weeks now, one in around midnight and one in midday. That evening or the night I didn't get hit at all, but rather got an early morning hit, what I haven't had for weeks. Nevertheless, I wrote it off as a coincidence.

What followed that day at work was a very bad hit, one that had me scraping the surface on the chair with my nails, hyperventilating and wailing. Somewhat scared of that experience, I had to gather several days of courage to try the NSAID again. The CH had indeed morphed, and now I got three times, once just before bed, the next day in the night at 3 am and so on. It was as if the beast was annoyed and confused.

Yesterday I hadn't had an attack before it was definitely bedtime. If that happens, I'm basically sure to get hit a couple of hours after falling asleep. I decided it was a good time to try the NSAID again and took one. No attack as of yet.

Of course this could all be a coincidence, but I don't think it is. A bit less than year ago I was eating indomethacin, another NSAID, for months and that was a very easy period for me. Afterwards it stopped working and I also stopped taking to get rid of the medication overuse headaches, which the daily use of NSAIDs sadly leads to.

Also I think it's clinically very interesting. I've tried opiates for the pain and they haven't helped - the pain is so intensive. Yet a simple NSAID makes the attack not come! There has to be some other mechanism than reducing pain at work here - the steroids and NSAIDs both reduce inflammation, for example. That's something that the opiates won't do.

Does this mean that I don't have CH? Maybe. I don't know. Chronic paroxysmal hemicrania perhaps? Statistically, I get far too few attacks and they don't last long enough. But we all know how at least CH defies falling into any sort of easily definable parameters.

- Best regards and PFDAN for everyone,
Rosa

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: So I think I found something that helps... Reply #1 - Oct 10^th, 2008 at 9:34am Sounds like you got a headache. Potter
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Ungweliante CH.com Veteran Offline Happiness comes from personal choice \o/ Posts: 169 Helsinki, Finland Gender:	Re: So I think I found something that helps... Reply #2 - Oct 11^th, 2008 at 12:37pm Potter, what did you mean by that..?
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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: So I think I found something that helps... Reply #3 - Oct 11^th, 2008 at 2:49pm Ungweliante wrote on Oct 11^th, 2008 at 12:37pm: Potter, what did you mean by that..? Whatever you want it to mean. Potter
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on my knees Ex Member	Re: So I think I found something that helps... Reply #4 - Oct 11^th, 2008 at 8:28pm just be cause we have ch doesn't mean we are immune to tension or migraine ha's my two cents worth
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Batch

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Re: So I think I found something that helps...
Reply #5 - Oct 17^th, 2008 at 12:45am

Using NSAIDs like Ibuprofen on cluster headaches can have unintended consequences. When I was still an episodic cluster headache sufferer, I confused a headache at the onset of an annual cluster headache season for a garden-variety headache... As I was out of imitrex and oxygen, I took two Ibuprofen tablets thinking it was no big deal either way... Early season attacks were usually mild and short lasting… If it was a cluster headache, it would end soon, and if it was just a regular headache, the Ibuprofen should work.

I pushed fluids and took two more Ibuprofen less than two hours later when the first two didn't work to relieve the pain I now assumed was not a cluster headache as the pain was on both sides. Later that night when I still couldn’t get to sleep, I took another two. Early the next morning, I felt like I was having a terrible hangover so I pushed more fluids and took two more Ibuprofen tablets… By ten that morning I had taken at least a two-day dose of Ibuprofen in less than 12 hours and was on my knees with pain so Joyce drove me to NIH...

They asked if this was a cluster headache and I recall telling them, "No. It’s hammering on both sides of my head from the front of my face, ear to ear, and from the top of my head down the back of my neck...” They sent me down to radiology with a STAT order for an MRI. As I was walking back to the National Eye Clinic following the MRI, a team of 5 doctors tackled me, tossed me on a gurney, and wheeled me back into radiology where they performed a fluoroscopy-guided lumbar tap.

If you're wondering why I received all the attention, the answer is simple. The MRI indicated severely inflamed meningies… like in meningitis… and it would not look good if a volunteer clinical study subject taking part in a new experimental treatment for an eye condition croaked while at our Nation's most prestigious Federal Medical Facility... Cultures of the LP tap failed to confirm any bacterial infection, but it was clearly a form of meningitis. Some of the brightest minds at NIH worked on me for nearly two days and after a battery of tests and questions came up with the diagnosis of Ibuprofen-Induced Aseptic Meningitis...

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Be careful using NSAIDs on cluster headaches.

V/R, Batch

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Ungweliante

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Re: So I think I found something that helps...
Reply #6 - Oct 17^th, 2008 at 2:03am

I'm sure it's not a tension headache or a migraine.

To reiterate, I have most of the classic CH symptoms. The pain is completely unilateral, on the right side of the head usually centered to the temple region. It's so bad that opiates don't help and they're considered one of the strongest painkillers there are. The attacks vary in how bad they are, but usually leave me unable to do much anything during them. I also get the Horner's syndrome - droopy right eyelid, stuffy right side of the nose, sometimes redness in the right eye. The attacks last 45-60 minutes, of which the peak pain phase is 20-30 minutes, and I get them 2-3 times per day. At my worse times I've got them as much as 6 times per day.

I wrote my post mainly to share my thought and brainstorm the mechanism of the headache. I have long thought that cluster headaches might actually be a sort of umbrella term to similar headache syndromes, which produce similar symptoms. Some of them respond to a certain group of medicines, while others might respond to something else or nothing (yet). However, that might be better analysed in another post.

Batch, I'm definitely going to be careful with ibuprofen. Basically I nowadays try to take as little drugs as possible. I'm not taking any kinds of preventive drugs anymore, nor do I use any kinds of abortives. However, I would, if those would provide a significant relief and not have too many significant side-effects. Using too many drugs, medication overuse headache is the common conclusion, and I find it a lot easier to be in a lot of pain around 30 minutes twice a day than being in pain constantly. When I weaned off the steroids, that was exactly what happened, and it was very difficult.

- Best regards and PFDAN,
Rosa

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Guiseppi

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Re: So I think I found something that helps...
Reply #7 - Oct 17^th, 2008 at 3:27am

I agree with you, in about 50 years, even all of us with CH are going to be broken into sub categories. There's so much about the brain they still seem to be guessing about. How else to explain how what stops my CH, won't touch yours? Why oxygen will stop mine on a dime but barely have an effect on someone elses? Why lithium is such an effective prevent for many, but worthless for others?

I worry when I see posts like yours come under attack, I'm afraid it will inhibit others who want to share things that are different from the mainstream.

Good luck going med free. many on the board choose to go that route, I tip my hat to you. I'm lucky in that after all these years, lithium and oxygen are still holding the line for me. Hang in there.

Guiseppi

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wayne mc

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Re: So I think I found something that helps...
Reply #8 - Oct 17^th, 2008 at 4:55am

Gday again

Noticed you mentioned Morphine didnt work, a couple of months ago I ended up in hospital with what I now no to be kidney stones (man dont they hurt) and they gave me morphine .
It didnt do a thing (dammm)
They told me somepeople dont respone to it (damm again)

I was out of cycle at the time.

regards
wayne

If I knew I would live this long, I would of looked after myself better!

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Kilowatt3 CH.com Old Timer Offline 1952 Jag Posts: 300 Lake Charles, Louisiana - USA Gender:	Re: So I think I found something that helps... Reply #9 - Oct 17^th, 2008 at 8:24am Guiseppi wrote on Oct 17^th, 2008 at 3:27am: I worry when I see posts like yours come under attack, I'm afraid it will inhibit others who want to share things that are different from the mainstream. Guiseppi Amen, Brother -- AMEN! Regards, Jim
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shelticon2

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Re: So I think I found something that helps...
Reply #10 - Oct 18^th, 2008 at 4:05pm

Ungweliante wrote on Oct 17^th, 2008 at 2:03am:

I wrote my post mainly to share my thought and brainstorm the mechanism of the headache. I have long thought that cluster headaches might actually be a sort of umbrella term to similar headache syndromes, which produce similar symptoms. Some of them respond to a certain group of medicines, while others might respond to something else or nothing (yet). However, that might be better analysed in another post.

I like your thinking. In a previous post I used the analogy:

Bumps, bruises and broken bones can be caused by a car accident or a fall off of the roof. Same symptoms, different cause.

I bring this up because I do believe that they are different causes and we will be divided up into different groups. I just hope that it does not take 50 years.

What I believe we wil find is that each group responds to different treatment. Once we find our group,we will have found our treatment.

This is why it is SO important that we all approach this with an open mind, and not insist that there is one and only one treatment. As some on this board do. ( yes, I speak of some of the O2 pushers out there)
It is also important that, if we find something that seems to work, we don't proclaim it a miracle cure until we've proven it over time. ( please share your discovery, but make known the details)

The survey here, and other places, are important tools used to gather data that will us find our group and thus our treatment or maybe even cure.

PFDs to All

jim

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Ungweliante

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Re: So I think I found something that helps...
Reply #11 - Oct 25^th, 2008 at 3:19am

I tried it again.

I took 15mg of meloxicam, a somewhat powerful NSAID for chronic users, just before bedtime. No nightly hit. The night before this I got hit at 6 am and before that at 3 am. I guess it could again be a coincidence, the CH frequency morphing or something, but I don't know...

On top of that, I found that alcohol doesn't seem to have any effect on me - apart from getting me drunk, of course Cheesy

I've tried drinking cider, rum, tequila, etc. No wine yet, but well...the other stuff at least hasn't caused any hits.

Being so, I'm increasingly convinced that some kind of closed inflammatory system is taking place. Only meds with an effect on the inflammation help. No help from oxygen or triptans, no hits from alcohol speaks against having a regular CH, although I guess it could still be that as well.

I'm going to take this up with a private neurologist I'm seeing in the beginning of the next month. She is specialized in pain management and CH, and is also apparently regarded as Finland's one of top three CH doctors. We'll see how it goes. If she doesn't have any answers, I'm going to see a private sector ENT as well - preferably specializing in facial inflammation.

- Best regards and PFDAN,
Rosa

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: So I think I found something that helps... Reply #12 - Oct 25^th, 2008 at 3:40am Wishing you the best of luck Rosa. When you finally find the routine that works, the feeling of the power over the beast is incredible!!!! Guiseppi
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Ungweliante CH.com Veteran Offline Happiness comes from personal choice \o/ Posts: 169 Helsinki, Finland Gender:	Re: So I think I found something that helps... Reply #13 - Oct 25^th, 2008 at 3:56am Thank you Guiseppi
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ClusterChuck

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Re: So I think I found something that helps...
Reply #14 - Oct 25^th, 2008 at 7:29am

shelticon2 wrote on Oct 18^th, 2008 at 4:05pm:

This is why it is SO important that we all approach this with an open mind, and not insist that there is one and only one treatment. As some on this board do. ( yes, I speak of some of the O2 pushers out there)

I don't think any of the "oxygen pushers" (and I guess I am one) have a closed mind to treatment, nor do we feel there is "one and only" treatment.

Some of the stupid treatments (like attaching banana peels to your head) we are closed minded to, but otherwise we are fairly open. We are also rather closed minded to quack cures, like chiropractic cures, as we know that they don't work for clusters. Chiropractic methods work for SOME things, but not clusters, and we get rather put out when people come on here spewing that they DO work. It gives false hope to newbies, and just takes their money.

Many of us "oxygen pushers" have been on the site for a long time, and seen discussions on some of these "cures", or tried them ourselves, so maybe we do get a little testy when someone brings one up.

We have become "oxygen pushers" because it is SO effective, for SO many sufferers, that is cheap, and has almost no side effects.

We have become "oxygen pushers" because without it, we would not be able to live any sort of "normal" life. Possibly no life at all, because we may have gone the ultimate cure: suicide!

We have become "oxygen pushers" because we hate to see someone suffering, when such a safe, cheap, and effective method works for so many.

We have become "oxygen pushers" because we want to get the word out to any new comers, that have never heard of it.

SO ... That is why I have become an "oxygen pusher" and I am damn glad I am. I know I have helped many with my information. I hope to continue to help with any information, or answers to questions about oxygen.

Chuck, the open minded "oxygen pusher"

CAUTION: Do NOT smoke when using or around oxygen. Oxygen can permeate your clothing or bedding. Wait, before lighting cigarette or flame.

Keep fire extinguisher available, and charged.

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E-Double

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Re: So I think I found something that helps...
Reply #15 - Oct 25^th, 2008 at 7:59am

good luck regardless and know that i am a firm believer in 2 things here..."pain is pain" so respect eachother and not using capital letters as you can see.

if you are finding that using NSAID is preventing and aborting attacks it may be that you have a different but similar headache type like PH as you mentioned whether it is diagnosed incorrectly or it surfaced and you have both as some do.

many docs will use high dose of NSAID to rule out other headache types prior to giving difinitive CH dx.

i have a few headache types running through the noggin...here comes the warning with NSAID...though it did nothing for clusters, high doses of indomethacin killed my idiopathic stabbing headache HOWEVER coming off of it gave the most bonecrushing rebound headache one could wish for....i dare compare the level of pain though different to clusters that hospitalized me.

anyway, wish you well on your quest and try oxygen Wink

I can't believe that I have to bang my Head against this wall again. But the blows they have just a little more Space in-between them. Gonna take a breath and try again.

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thebbz

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Re: So I think I found something that helps...
Reply #16 - Oct 26^th, 2008 at 2:41am

Quote:

I don't think any of the "oxygen pushers" (and I guess I am one) have a closed mind to treatment, nor do we feel there is "one and only" treatment.

Thank you Chuck.
all the best
thebb
NSAIDS are not a treatment for CH
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Ungweliante

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Re: So I think I found something that helps...
Reply #17 - Oct 26^th, 2008 at 7:20am

Well, I don't know what I have, but the 15mg of meloxicam had me 31 hours without an attack. I took it 8 hours after an attack and usually I get one every 12 hours. Nothing but the steroids have previously managed to keep me that long without an attack, and then I have had to take additional doses.

Meloxicam has a long half-life, around 20 hours. AFAIK it's designed to work against gout and arthritis. Prednisolone has a half-life of around 2-3 hours, but is probably more efficient against inflammation, even though meloxicam is a NSAID which specifically targets inflammation. The steroids are potent stuff.

During my 31 hours of respite, I didn't even have any shadows. I think that's quite great! However, I won't start taking them all the time. It definitely feels good, though, to know that there's something probably less dangerous than the steroids which I can use to stay without the attacks.

- Best regards and PFDAN,
Rosa

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sandie99

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Re: So I think I found something that helps...
Reply #18 - Oct 26^th, 2008 at 9:07am

Rosa,

I'm happy for you! PF time is always PF time and I'm so glad to hear that you didn't have even shadows. That is absolutely fantastic!

Are you seeing the neuro at the very same place? I'm just curious if she is the same neuro I saw back in 2004, and she was a good one.

All the best & more PF time,

Sanna

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BarbaraD

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Re: So I think I found something that helps...
Reply #19 - Oct 26^th, 2008 at 1:34pm

Rosa, Glad you found something to get you PF. Hope you DX is not Clusters.

And as another O2 Pusher out here.... I DO keep an open mind to other treatments and hope for a cause and cure some day, but as of TODAY, O2 has been a lifeline for about 70% of us here and we will continue to PUSH it and hope it will give others the relief it has brought to our painfilled lives.

For those of us who've been with other Cluster sufferers (in person) and watched them go thru hits and watched what O2 can do, Hell yes, we push it because we KNOW what it can do.

I'm not only a PUSHER - I'm a USER and proud.

If we get a little testy don't be surprised. Most of us here treasure our O2 and want everyone to know about it. And I'd suggest a little "open-mindedness" to that.

Hugs BD

What don't kill ya, Makes ya stronger!

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Ungweliante

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Re: So I think I found something that helps...
Reply #20 - Oct 29^th, 2008 at 7:09am

Thank you for the well wishes, everyone

Somewhat unfortunately, I think the condition might already be getting a bit worse day by day again. On the first day after meloxicam, I didn't have even shadows. One day after that, some very mild feelings on the CH (for the lack of a better term) side. Now, I woke up feeling like when an attack is developing - this sort of feeling of slight pain and building up pressure - but it never did.

Also, just now at work I had a definite feeling of pain and pressure on the CH side - it lasted for around 30 minutes. A very normal attack length for me. It was nothing like an attack, though...but rather what I would call a shadow.

I keep thinking of stuff which might have exacerbated the condition. I had a coffee this morning - sometimes the caffeine seems to affect the pain by making it worse or easier. Might be just in my mind, though. And I also have been staying up late and drinking a bit every day (alcoholic Rosa Wink

). Whether that has anything to do with the attacks or not, it's really difficult to say.

I think soon I'm going to stay away from the meloxicam for a while and see how it affects the CH (again, for the lack of a better term).

And yeah...I hope the diagnosis is not CH either, mostly because there is no cure for it yet. I keep hoping for the cluster-like headache caused by some kind of a curable / treatable condition.

- Best regards and PFDAN,
Rosa

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ninja mom CH.com Alumnus Offline Posts: 586 Gender:	Re: So I think I found something that helps... Reply #21 - Oct 30^th, 2008 at 1:53am Rosa, Although I am not a doctor, nor do I play one on TV, I would suggest you be aware of your sleep habits...same bedtime, same wake time-no matter the day. Also, since alcohol is an almost universal trigger I would forego that nightly drink. Just my humble opinion, PFDAN kathy
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Ungweliante

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Re: So I think I found something that helps...
Reply #22 - Oct 31^st, 2008 at 8:51am

Two more painfree days! Cheesy

Maybe the worse period was just natural fluctuation in the underlying condition. Anyways, so far this meloxicam has totally changed my life. I don't have to count time from one attack to another anymore. I don't even think about them very much anymore

And I had some red wine last night - Red wine, can you imagine? - and I didn't get even a slight headache Smiley

Anyways, I look forward to the 4th day with interest. I'm meeting the new neuro then. We'll see what she says.

- Best regards and PFDAN,
Rosa

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Rolomatic

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Re: So I think I found something that helps...
Reply #23 - Oct 31^st, 2008 at 9:50am

I am a O2 pusher.

The problem as I see it is that the doctors don’t push it enough or as in my case they don’t give adequate instruction on how to use it properly for the relief of CH attacks.

My neurologist prescribed O2 the day he diagnosed me but it didn’t work at all well for me because I was not given the proper non-rebreather mask and the 15 LPM regulator supplied by my O2 supplier was grossly insufficient at delivering enough flow for CH attack relief.

I feel that the pushers (I am one in this school of thought) are just trying to make sure that the new CH sufferers complaining that O2 doesn’t work for them are educated on the effective use of the pain reliving gas that has helped so many of us chronic CH sufferers put the pistol back in its case as Chuck has eluded to in his post.

In this age of modern medicine so many think there has to be a pill for every condition.
I surly wish this were the case but it is a pipe dream to expect it to be true.

NSAID’s will destroy your organs, Prednisone will eat your bones, BP meds have SE’s,
And if you can not stand the dopomax and other epileptic drugs, O2 is still safe.

I only know of three O2 deaths in my life time and most of us won’t be getting in a space capsule any time soon.

As a chronic daily sufferer, I would be in a dark room screaming for 2 hours a day without the O2 and lithium. The episodic suffers are usually the ones who give up on the O2 therapy because they don’t want to dedicate themselves to using it properly or give up because their cycle is almost over.

Rolo the O2 pusher! Wink

Edit to add; O2 is the only treatment you can get over the counter. The welding supplier counter!

« Last Edit: Oct 31^st, 2008 at 10:07am by N/A »

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Guiseppi CH.com Moderator CH.com Alumnus Offline San Diego to Florida 05-16-2011 Posts: 12063 SAN DIEGO, CALIFORNIA USA Gender:	Re: So I think I found something that helps... Reply #24 - Oct 31^st, 2008 at 5:00pm RED FREAKING WINE!!!! Wow, red wine with no hit is a GUARANTEE my cycle has stopped. I don't dare to a vinegarette dressing on cycle! Great news Rosa, why doncha wait about 5 years before your next cycle, I've found long remissions to be just fine! Guiseppi
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