Re: MOH some possibly new information. See end of thread. P6

[AuntieBubbs]

Senna, I could sense your frustration, disappointment, etc. I could tell that's where you were coming from, not from an attempt to attack anyone. I felt bad for you that you were immediately jumped on as if you were. Was kind of confused by the comment about "spoiling" someone's "fun" when the topic was introduced, and then treated in subsequent posts, very seriously.

Not that it matters, but I don't get rebound headaches. Never have.

But I disagree with you about this not being a social forum - I believe it's both. Alot of us don't get to socialize much and this forum fits that need as well. But no harm, no foul, right?

Theresae - BTW, love the Avatar - I felt the same way for ages about triptans and OTC. I'd go for days taking 2 or 3 triptans and/or advil, then for days not needing anything, and wonder what the heck was wrong with me. I'm now at the point where I just don't care. If I need it, I take it - though because of cost reasons, I am trying not to take as many triptans (merely because I can't afford to take them unless I'm absolutely sure I need to, as I can't afford, financially, to fill the script as often as I need to).

I get too frustrated by passive agressiveness, so now that I've given my input, for what it's worth, I'm over and out. GL to those of you trying to decipher the importance of rebound headaches.

[Brenda]

My neuro tried to tell me that I had MOH from the Nubain my GP was giving me. What I have to me at least seems like regular migraines. The light, sound, smell sensitivities, one sided throbbing pain. I've been trying not to use as much of it, and I've been out for almost a week. I don't see any difference whatsoever. I'm not saying MOH doesn't exist, but sometimes I think it is just easier for a doctor to put that label on it than it is to find a treatment that actually works. I think they just don't know what else to do, so we get the "blame" for it.

[Senna]

Good luck with your neuro tomorrow, Pen.
Is it the revered one, by any chance?
If so, you better ask your eminent neuro about all these facts and figures.
You mention the "1 in 50 of us" to us time and time again, why don't you ask him how he arrived at these figures?

And, sorry no, you have not cleared up this issue and such statistics without source, lack credibility.

AB, yes you are quite right it is a also a social forum.
MY fault for not explaining myself better. Yes, definitely is great as a social forum, what I was trying to say is that this is mainly medical, not a social matter that was being discussed and whilst we have lots of fun discussing other subject, this was a matter which troubles greatly many people therefore a serious issue and this how I, and many others read it.

Senna

[AuntieBubbs]

Brenda, excellent point. I think you're right, doctors may be quick to slap the label of rebound, or MOH, when something else may be going on.

Senna, with all due respect, you should probably back off the sarcasm. Just a suggestion.

[Senna]

Yes, you are right AB.
I just got annoyed by the patronising tone implying no sense of humour, unless you are English (statement which was later edited) and calling neuro revered as if he was a precher, which sounded a little pretentious. My head is not so good today (I also have a cold), so I get easily irritated.
But no more sarcasm, I promise.
.
Senna

[AuntieBubbs]

Ah, I see. Well, in that case, I don't blame you for being annoyed, though the OP should be very careful about making comments like that. I doubt they'd be found humorous if made against the British.
I didn't realize this was intended to be a humorous thread. Perhaps it should be on the other side of the forum.

[moominamy]

I too would love to know where this figure comes from. There are various clinical papers that quote various figures, but to make sense of the figure you need to look at what the researchers were counting or discounting and what the population studied was etc etc.

Also, statistics like this are never really going to translate directly to forum members. We are not typical migraineurs on the whole. In fact most of us would probably be excluded from many of these clinical trials for fear of biasing the research negatively!!! I have been turned down for many trials for this exact reason.

But whatever the figure I think it's really pretty irrelevant if one's migraines are getting worse and MOH is suspected. Just because something is supposedly rare (and 1 in 50 migraneurs, if that's what it is, isn't all that rare when you consider the vast numbers with migraine) it doesn't mean it isn't happening. And still the only way to find out if one has MOH is to cut out the meds entirely and see what happens. All the speculation, justification and equivocation in the world aren't going to tell you if it's MOH or not. Nor are the many varied opinions of neuros, drs or forum members, including me .

Pen, you've been asking about MOH in many ways for around 3+ years. The ONLY way you'll ever know for sure is to stop all the meds for a reasonable length of time. It's as simple as that.

Like Auntie Bubbs I feel I have to stop posting on these threads too. I have limited energy. I've really tried to help Pen, and I hope in some ways I have, but this just isn't getting either of us anywhere. I wish you all the good health in the world and offer all the support I can in other ways, but I just don't think I can contribute anything I haven't already said regarding these and other issues that have come up many times before.

Your friend (and hoping to stay that way)

Amy

[Senna]

Amy, well said! Specially the point you make about MOH:
"The ONLY way you'll ever know for sure is to stop all the meds for a reasonable length of time. It's as simple as that." Absolutley.
IT is the only way.

And BTW stopping something for few days, whilst taking all sorts of other medication will tell you nothing either, so this is why it is best done under medical supervision in hospital.
I cannot imagine why Pen will not want to try this, since she is so preoccupied with the subject.
Such treatment is definitely available in UK and is supportet by many eminent neurologists who are interested in the MOH issues.

I have a feeling that Pen is perhaps still searching for answers that will confirmt her point of view, rather then reality of the situation.

I think we definitelyl wish her well, and perhaps one day she might even do something about it, if the issue of MOH worries her so much.
Senna

[pen]

Ok, thats it. I have to leave now. I wish I hadnt logged on before I went, not cheered me up at all.
Cant you see, it wasnt research it wasnt statistics it was just my curiosity and NO Amy it wasn't even for me.
It has been months since I really posted on here after the last time, and I guess I wont bother again.
If some of you disagree with the premise or dont have the energy. Its not like everyone has to answer every post on here.....why bother.

WHY do you post? My parents always told me if you cant say something nice...
It was all going fine until Senna posted then B who swore never to post on any of my threads again had to add in and Amy???
You?? As we have actually spoken I am surprised you even bothered, I know your situation, appreciate your help and wish you had stayed away from this thread cos now I feel very uncomfortable.

It wasnt "serious research" nor was it flippant. I just was given the figure from someone else who is concerned, was telling my husband and thought it might be interesting to just see if this group came anywhere near.....
I sent Senna a PM because she misunderstood my comment about not getting my English sense of humour...egged on by B of course. It didnt mean anything other than its my humour.....if anyone else thought otherwise, please say so and you have my unreserved apology.

So that is that. I wont be back on this. This forum is great, but I dont come on here for agro. Healthy disagreement sure, but why would we want to raise our stress levels doing that either. I wasnt being controversial, I was, as I said...just pondering...
Nothing more, nothing less.

I will likely regret this later, but I needed the catharsis of response. But I have to go, I have to go with an upset stomach and a bad head, but unfortunately I logged on to check the traffic and saw I had update on here....I SO WISH I hadnt looked....Thanks guys...Leave it all to you for now.

[moominamy]

Pen, no-one wants you to leave the forum.

I hope you get to reread my post when feeling less tetchy about it as I really do wish you well and hope we can still talk about other issues. I'm not jumping in with Senna and AB either. This is something I have realised I needed to say as it was making me avoid the forum and posting here generally. I regret picking this thread to do this on, really not a good move on my part and I apologise for that.

Take care

Amy

[estre004]

No for me. I don't think I take enough for it though. I do know that if I was taking something and it was helping my migraines I wouldn't care if I got MOH or not as long as I felt better than on no medication.

[estre004]

P.S. I just read all of the other posts after posting mine.

Pen - Don't leave.

To those who are annoyed - There are many posts on this forum that do not interest me because they do not pertain to me so I simply do not read them. I agree that if you do not have something nice to say, don't say it. You can still voice your opinion. You have to realize that when writing vs. talking you can sound entirely different to the receiver than you meant to be. Don't attack the person, attack the subject if you want.

The way I read the post was that we keep hearing about MOH, but how many people actually have it to warrant so much attention. If only 1 in 50 actually get this, then it goes to show that most likely you don't have it. I think Pen wanted to know if she would get 1 "yes" answer or 40 to put her situation in perspective. Whoever said the only way to find out is to just quit medication is absolutely right but that is a huge thing to do if you honestly do not think that is the problem. With only 1 in 50 actually getting MOH, it most likely Pen does not have it. If she got 30 or 40 Yes's it would warrant giving up medication a try.

So there. that is my opinion.

[Johnfd]

Oh please.

Don't fall out over this. Heaven knows our lives are tough enough as it is.

If Pen has a thing about MOH, and I can't say I'd noticed this before, let her explore it. The rest of you can get involved if you choose. You don't have to. Be adult about it. Pen contributes positively to the rest of the life of the forum and shouldn't be made to feel so uncomfortable.

So Pen, Stay around. You do have a point. MOH comes up time and time again as an alternative to chronic migraine or as a (mis)diagnosis and was applied to me because I had used over the counter meds in my desperation. This was despite the attacks clearly being migraines and nothing else. I continue to be warned about MOH whenever I see anyone new and there is always an air of disbeleif when I tell them the low level of pain relief I use. It seems that, whatever I say, the first question is "is it MOH"?

So to answer the original question "No. I've not had MOH"

[Ivy]

English is not my first language, so my interpretation may be wrong and I apologize for that.

When I read Pen's original post, I took it as a funny way to joke about silly statistics that don't even know what migraine means.

I think that her question was hyronical and wanted to reinforce the fact that it's annoying to hear that genuine migraineurs are only drugs abusers. So, maybe, she just expected to have all together a virtual laugh on statistics and did not really expected that anyone would take it too seriously and answer: YES, I BELONG TO MOH SUFFERERS.

I hope that she comes back, I'd miss her...

[Paradox]

I'm trying to keep my temper down right now so will not say much of what I would like too.

I hear much about MOH, so like Pen was interested in hearing anecdotal information from those on the forum who have experienced it.

I did not realize I had to present relevant research data, and scientific research fact when I posted on the forum. I want to find out from the forum what fellow migraneurs experience, not what clinicians and statisticians have to say.

It is etiquette on this forum NOT to mention Doctors names specifically.

It is also common etiquette in the real world not to bully with sarcasm.

[LizzieB]

To the last few posters . . . hear hear . My shoulders have dropped down 6 inches since reading them.

Thanks for the breath of fresh air

Liz

(I sent you a PM earlier Pen)

[tecky]

Just wanted to get my 2 cents in, whatever it's worth.

I think we all "wonder" about various issues on migraine, and this forum is our chance to hear from others who actually deal with them, have a very wide array of symptoms and have tried every known possible treatment. We can choose to answer or not.

I don't want anyone to leave or feel bullied or unappreciated. Everyone has a perspective, and it's valuable to the rest of us. I very much appreciate hearing many sides of the issues--whether it's proven or not (excluding the trolls, however). Who knows, it just may help one of us! Wouldn't that be a blessing?! Wouldn't something that helps even just one of us be a positive outcome?

I also think that some of us can be irritable when we're migraining, and sometimes we need to double-check our responses, as well as our perceptions, to ensure it isn't misinterpreted because of our irritability (I know I get irritable, anyway, if no one else does). My husband just usually tells me my migraine must be escalating--that's my cue I'm getting irritable (and he's almost always right).

Please, please no one leave. I appreciate each and every one of you so much. Even if I don't comment, I get benefits from all posts. If nothing else, it's comforting to hear someone else is struggling in one way or another.

Becky

[dailyha-rose]

are you guys talking about medication overuse headache? i have had multiple neuros. and i feel you always have to educate them and their nurses. it always seems that is the first reason that they think i have chronic daily headaches. so i bring it up gently but right away. no otc and i only have amerge and anaproxen to ward off the big m. just recently got stadol again. told to only use 3 (X) month. had my husband lock it in a cabinet. this way i protect myself from any suspicions. luckily i can go to my pc for dilaudid and anti-nauseant IMs also 3(X) but if they are closed i go to urgent care clinic - first thing i mention is it is not rebounds from med. when i had a root canal the dentist said "you are a migraine patient so you must have lots of pain meds" thank goodness he believed me when i said no, and gave me some pain meds for the sore gums. seems everyone thinks we overuse.
rose

[estre004]

If we are overusing, part of the problem is the multiple meds they push on us when usually there is only one or two of them that actually work. The ones that usually work are hard core ones that raise suspicions. I think the only way for them to get it is to have a migraine themself.

[theresae]

in previous threads this subject usually provokes quite robust answers and i do wonder why, is it because somewhere in the back of all migraineurs minds they wonder if there is an element of truth to the rebound theory, but to admit it means that we may have to face a life without much pain relief at all, and then where the hell does a person go from there,

i for one do have concerns that i may have rebound or that i have created a situation where an occasional migraine has turned into a weekley event because i reached for the pain meds and triptans so freely in the early days, i took triptans whenever i felt even a twinge of a M coming on to begin with, after being told by a gp that there was no risk at all of rebound by triptans, (that was 9 years ago)

you know that saying 'you've hit a raw nerve' when someone mentions something and the other person flares up straight away,

this is absolutely not a criticism of anyone here, it is just somethng that i feel may explain how the topic of rebound gets so heated, everytime.

[pen]

in previous threads this subject usually provokes quite robust answers and i do wonder why, is it because somewhere in the back of all migraineurs minds they wonder if there is an element of truth to the rebound theory, but to admit it means that we may have to face a life without much pain relief at all, and then where the hell does a person go from there,
i for one do have concerns that i may have rebound or that i have created a situation where an occasional migraine has turned into a weekley event because i reached for the pain meds and triptans so freely in the early days, i took triptans whenever i felt even a twinge of a M coming on to begin with, after being told by a gp that there was no risk at all of rebound by triptans, (that was 9 years ago) you know that saying 'you've hit a raw nerve' when someone mentions something and the other person flares up straight away, this is absolutely not a criticism of anyone here, it is just somethng that i feel may explain how the topic of rebound gets so heated, everytime.

Hi Theresa. You have a point you know. It does seem to spark people off. And it could be for the reasons you gave.
I have been accused of going over old ground with this, when actually I didnt post from a personal point of view at all.
But I do admit I have posted about it before. Forgive me I didnt know there was a limit....especially if one is still searching.
And no one is ever obliged to post on any topic they dont care for, or have no interest in......are they??

However, I was chatting to a FB friend who is very concerned about it. Then another friend gave us details of the figures given by this neuro in a presentation. Now 1 in 50 is also 2%......AND this is the figure most often mentioned in England.....
Now it is not my data and No I dont know how they come by this. Presumably they all imput their MOH patients into a database and count them?

I posted out of sheer curiosity to see what anecdotal feedback we as a membership of over 200 could impart.
Wasnt meant to be flippant, but was as I said, just me pondering. Now it was and is a very innocent posting that has started a lot of trouble which I was left feeling very uncomfortable about.
And why is that....do they all hate me......is the subject banned...wish someone would have told me....
No, I think it might be more in the vein you suggest Theresa.

And therefore, IF and I say IF we as the sufferers don't bear out those figures, perhaps we could avoid some of the guilt and stress we bear because of it. Especially those of us that just cant survive without our medication. There are many more reasons for chronic migraine than MOH.

If on the other hand we number far more, then there is much work to be done and they need to get on with it.
I imagine most of us have at some time wondered if we have it. But when I first got migraines, as you said Theresa, it wasnt heard of and I am still being told by my GP that Triptans dont rebound....

Despite the deviation from the intent, I have enjoyed the comments (well most of them) and have no regrets about posting it.
You make an interesting point Theresa, thank you.

[pen]

Sorry meant to post this earlier, as my post has been under scrutiny for the vagueness of the figure.
I have found that the 1 in 50 actually is quoted by the neruo and comes from BASH (British association for the study of headache.) It is NOT where I originally got the figure from, but might be where he got it from.
The article can be read here: http://www.patient.co.uk/health/Headache-Medication-Induced.htm
perchance anyone might want to read it. I am not trying to prove anything, but I have been pushed for a source.
It concurs with the most popular figure given of 2%.
I do hope that helps and it means the neuros name is not given here which is against forum ethics.

Night all.

[Johnfd]

Hi Pen,

What I think is interesting is that the article appears to refer to 1 in 50 people in general as having MOH at some point in their life and not migraine sufferers in particular. For me, that's very relevant. My personal experience was that strong efforts were made to link the transformation of my migraine to chronic migraine, several years back, to overuse/misuse of medication. In fact it was quoted to me that medication overuse was "a common cause of transformed migraine". You would think common meant more than 2%.

The piece also doesn't describe what form a medication overuse headache takes. If you have migraines and you take the medication for this will your MOH take the form of more migraines? My understanding (I'm sure I've read this elsewhere) is that the answer is actually no. It hints at this saying, "often described as 'oppressive' and tends to be worse first thing in the morning, or after exercise. It may be a constant 'dull' headache with spells when it gets worse".

There seems to be obvious sense in the MOH argument and I try to use as little pain medication as possible, which is not hard as nothing much works. However, I think that the knowledge of migraine and headaches generally is so confused and confusing that we are fed the truth and the possible truth and the untrue in fairly equal amounts. The confusion also means that what information there is gets misused. Hey Ho!

John. Having a good day. Hope you are too!

[jeselle]

Dear Pen,

I am suprised that your Doctor (GP/or neurologist) is saying that triptans don't cause rebound.

In everything that I have read, it says that any specific class of drug taken more than 2-3 times a week can cause rebound, triptans included.

Even NSAID-which were aluded to before as maybe not being quite so suceptible-but yes, these to, in the literature, are subject to causing rebound.

Now, you may not believe the literature. That is another matter.

I myself, have been in a position where I ended up with MOH 3 different times. During these times my migraines had become more frequent and I had taken more rescue drugs and it became a vicious cycle. My neuro put me on a medication holiday for 2 weeks (yes, very difficult to go drug free-no fun at all-would not wish it on anyone) and the number of migraines I had decreased afterward.

Because of this experience I only take my triptan 2 times a week and my anti-inflammatory 3 x's a week. No more. I don't want to fall into MOH again. I know how bad it is.

[theresae]

hi jeselle, i think our gp's etc in the UK are now talking about rebound, and lay the blame firmly at our feet when ever it is mentioned, but going back say 5/6 years ago the gp's that i saw, over a period of time all said the same that triptans didnt cause rebound only otc meds and stronger pain relief on prescription, (at that time i was only using triptans nothing else as nothing else helped) so i went away feeling free to take them whenever i felt i needed them, it was around that time also that the migraine trust in the UK starting talking about 6 being the max number of triptans that a person should take in a month, otherwise they were putting themselves at risk of rebound, i believe they still say no more than 6 now,

this is all very well, but i am so frustrated, because where do any of us go from there, ok so six is the magic number but now what, that has only got me until the end of week 2 of the month sometimes, and everytime you ask the gp's just shrug their shoulders!, which is why i am now on two preventatives.

Again i would like to say this is not a critcisium of anyone it is just me havin a moan, it is the one topic that frustrates me the most really,

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