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

[pen]

Just pondering. We have 270+ members here. So, according to a very revered neuro here in the UK. 1 in 50 of us has MOH.
So 5 of us have MOH.
I just wondered how many think they have it?
So which 5 of us is it???

If it is a lot more than we are not a representative group.
Or is he wrong??

Just pondering.

[HeelerLady]

I know it's not me. I don't take enough or often enough (been gritting teeth and bearing it lately).

So from the classic childhood sayings: Not It!!

[pen]

I dont think its me either. But by the comments on here over time.
It would appear to be more than 5 of us...
so who is kidding who??

[LG]

not it!

[milo]

Oh...pick me..pick me! Wait a minute.....nope...it's not me....at least, not in my opinion.

[Paradox]

Nope, not me. I went on a three month "drug holiday". No OTC, no nothing. Just three months of hellish headaches with no relief.

I've always felt MOH was over-rated.

[Brent]

Ten days without any pain meds here.

[HeelerLady]

That's GREAT Brent!!!! So happy things seem to be settling for you.

[pen]

Nope, not me. I went on a three month "drug holiday". No OTC, no nothing. Just three months of hellish headaches with no relief.

I've always felt MOH was over-rated.

I am having so many migraines and am taking more medication. Cant help but wonder....
But I do get runs of no med and in this neuro's statement he says....

The over used med can even make the pain worse....
thats a new on on me....

I just wish they would be more specific.
Some people have gone through Hell to get off the medication only to find, well as above.....

But one in fifty.....I cant decide if that is a huge threat or not.
What say you??

P

[LG]

If I ever thought meds were making me worse instead of better for even just a second, even if it wasn't true MOH and it was making my migraines more severe I would gladly take the risk of stopping the narcotics/barbituates to see if that was the cause of the increase in pain. Migraines are all about trial and error over and over again. It is the nature of the beast unfortunately. I hate it, but it is the true fact of this disease. In order to make anything better and find answers you must take the good with the bad and make sacrifices in your treatment, even if the outcome may not be desireable. Once you stop taking the medication and possibly find that your migraines are not medication-related, you will feel a significant weight off your shoulders. That's my point of view on it. Hope it helps

[lesherb]

I've had MOH, years ago. It's awful.

I don't have it now.

[pen]

[quote]

I've had MOH, years ago. It's awful.

I don't have it now.[/quote

How did you know you had it?
Why dont you have it now?
You got off the med, but what are you doing differently please?

Now do you count a yes or a no, given no one else has yet been counted.

Hmm

[lesherb]

Well, my MOH was from using Fioricet and Fioricet with codeine (Fiorinal is Butalbital which is a barbituate and the "cet" is Tylenol or acetaminophen). I was taken off of that and put on a preventative (antidepressant) and no pain meds. This was back in 2001.

I was "cured" of the MOH pain but still suffered from frequent migraine attacks. I ended up quitting my job and was hired 3 months later. Two years later, I quit that job and haven't worked since.

I am on continuous pain medication now. I take short acting in the daytime and long acting at night.

The symptoms of MOH (for me) were sudden onset of pain at about the same time every day. The pain was different from migraine as it was bilateral instead of on one side. It also felt very different. I don't know if I can describe it. It was more of a physical pain sensation as if my head had been hurt physically. My migraine episodic pain feels more like an imaginary place. Gosh, that sounds strange but it's the best description I can come up with.

I guess I am screwing up your survey. I am a former MOH sufferer. Just ignore me if my info is too confusing. I won't mind.

£eslie

[pen]

NO you are not screwing it up at all. Thank
Thank you for explaining.
You must have been through a lot.

There is a method in my madness.
I would like to post the rest of what this neuro said, but not sure if I am allowed.
Could paraphrase it I guess.

You knowing you had it and being able to describe it actually helps.
I think for now, hoping more might comment, maybe after the week end, I shall count you as number one.

I am only sorry that despite all, you are still having to medicate so much. this disease really is deserving of more attention and help than we get.

I have been given a suggestion to take NSAIDS in largish doses to stop the migraines coming at night.
See what mr Neuro says on Monday supposing I make it.
Thanks again.

[Anna]

I find this topic very confusing. All my "headaches" are migraine- you know, one sided, photophobia, phonophobia, osmophobia etc. All of 'em. And what I read about MOH is that those feel different somehow- as Leslie described what she went through. But my migraines are 24/7 except when I medicate. So, what's that about? Some of my doctors tell me it's MOH- and they're convinced that's what it is. But mine started to be daily when I was taking almost no meds due to being pregnant. That was 25 years ago and they are worse now, but still daily. So, do I have it or not? I don't know. (I have tried stopping meds and I become so ill that I end up either taking what I have or going to the ER).

[lesherb]

Well, for one, I'd stop standing on my head if I was you -------->>>>>

LOL

If I had any medical authority, I would tell you that what you described so far does NOT sound like MOH to me. That, along with $3 might get you a Venti at Starbucks

[pen]

[quote]

Well, for one, I'd stop standing on my head if I was you -------->>>>>

LOL

Ha!!!. My thoughts as well Lesley....Great minds and all that...

I dont have known experience of MOH, but I agree, Anna has a lot of "phobia" stuff ,but not sounding like MOH from what this neuro has said.

Lets see if we can get some more feedback from other posters...hope so, need a bigger sample.

[Anna]

Okay, okay- you know, I rarely stand on my head anymore- and not if my head's pounding!!!

And they're not phobias, Pen! (oh, wait, I guess they are... ) I SHOULD have said, light sensitivity, sound sensitivity, and stuff can really stink.

Maybe I'll change the picture????

[Paradox]

Pen,

I'll try stir the mud a bit.

If I take my full quota of narcotics on a bad day, I will wake up in the middle of the night with a headache.

But, it is not a migraine. Is is just as Leslie described. It is all over my head, instead of just on the right side. It's a dull steady ache rather than throbbing and stabbing. If I go back to sleep it is gone when I wake up.

When I have one I think to myself "Oh, this is what a MOH is". Don't know if I'm right or wrong though.

[Mule Kick]

Pen,

Maybe you need five catagories of responses, instead of just yes or no?

For example:

1. Definately experience MOH, currently.
2. Might (but not sure) experience MOH, currently.
3. Might (but not sure) have experienced MOH in the past, but not now.
4. Definately have expeienced MOH in the past, but not now.
5. Have never experienced MOH, either currently or in the past.

**********

About six years ago, I was perscribed generic, liquid - since I can not swallow pills, Ibuprofen for pains other than migraine (Cervical Spondylosis, for one). Dosing instructions were, "Take 4 - 6 teaspoonfuls by mouth three times daily". (This is equivalent to 400 to 600 mg three times daily.) I never took more than the amount that I was perscribed.

After having been on it for awhile, I began to notice that, about one hour before my next dose was due, I was getting a headache that was subtly (hard to pinpoint exactly how) different from a migraine. After taking the dose the headache would gradualy disapate, until about an hour before the next dose, when it would return. I surmised that this was rebound / MOH from what I had read on the old Ronda's forum.

After I got permission from my PCP to discontinue taking the Ibuprofen (which was not effective in the least at reducing my neck pain, even slightly), the MOH eventually went away as all of the Ibuprofen cleared my body.

Therefore I know that I have had MOH in the past, but I do not have it currently.

Also, I am one of the minority on here with only sporadic migraines (attacks usually last 3 days, only a couple of times have they lasted 4 days). Some weeks I do not have any; rarely I will have two migs in one week. I usually have a week, to a week and a half, or 2 to 2½ weeks between attacks, but rarely 2½ to 3 weeks or more, frequency varies unpredictably.

[Senna]

I am affraid that these figures are quite meanigless since they are just a hearsay, rather then a scientific reaserch facts, and therefore cannot be treated seriously. Perhaps you have an access to the relevant reserch data? If so, can we please access the source.

Many doctors like to wave such figures about just to confuse the patient (often when they ask too many uncomforatble questions).

Also, the way the question is being asked here will not answer MOH frequency question sufficiently, since statistically speaking there are not enough numbers, to make it a valid result.

Given the additional fact that most people with MOH either do not know that they suffer from MOH, or are in denial about the whole issue, I do not think that we willl learn anything useful in terms of the issue of MOH frequency in such a poll.

[pen]

Im sorry Senna you seem to have totally missed the point. I need it to be anecdotal.
And there are no figures. Just comments.

Question isnt asked in any particular way.
Anyone can say as much or as little as they like.
Not looking to learn anything, nor looking for science.
Just trying to see if we as real people go anywhere near the statistics.

Not vague comment from a neuro, this man is much revered and this is from a presentation to many, not just verbal to one person. I will ask if I can post the info, but it is hardly worth it......about one line is all.

So what is your personal comment please?
You are entitled to your opinion, there is nothing to agree nor disagree about. Just misunderstanding I guess.
Question is just yes or no for the purpose of 2% figure given by him. Comments are nice too, especially for those of us that might be wondering sometimes. So far I dont have anything as described myself.

[AuntieBubbs]

Wow.
And that's why i stay out of these threads - every time I'm slightly tempted to see what all the fuss is about, as in this thread, a slight differing of opinion isn't tolerated. Such a shame.

I didn't think Senna was being negative, just thorough in requesting information. I also tend to agree with Senna. Of course, I'm also a supporter of OTC meds, and of taking whatever meds you need to, whenever you need to.

[Senna]

Thank You AB, you are so right that no difference of opinion is tolearetd here, however well meant.
This is not social forum (where "societies of mutual admiration" serves some purpose ) but this is a forum created for dealing with a serious medical condition, therefore we must bear in mind that unless we all contribute in a constructive, sometimes controversial way we will never learn anything, new or useful from each other. But like you I often have questions which I am affraid to ask, or querries to raise.

Pen, you ask "dont spoil my fun".
I am sorry, but in the light of the importance of this issue I cannot quite see this as little "fun". And unless you are prepared to name that "revered neuro" so we can look into the claim, I cannot treat your/his comments with any seriousness. As he revelead these "facts" at the public presentetion, this is hardly a confidential information so I cannot see why you cannot tell us.

BTW I do not see any point in disclosing any personal information until you treat it seriously.
I've read your thread in order to learn something from it, and I was dissapointed, this is why I sounded annoyed - sorry you did not like my response.

[theresae]

i have to say i find these posts confusing and i come away non the wiser, i have no idea whether i have rebound headaches, and neither do any doctors really, they all chop and change their minds depending on their experenice and sympathies towards migrainers, but thats just my opinion, i read one book, or newspaper report and it says anyone who takes otc counter even for a couple of weeks are at risk of rebound, some reports say once you have had rebound to avoid the drug forever otherwise your body is inclined to go straight back into rebound,

i find it quite depressing to be honest,

i have only ever got migraines, always on the right handside with all the sensitivities to light noise smell and nausea, etc, some days they are a scale 8 other days a scale 2/3 but always with the same symptoms always on the right never on the left or all around my head

i have gone through times of takin triptans every 2/3 days for months on end, then not take them for months same with otc and 9 years later i am still baffled by this talk of rebound and i feel quite insulted (by the medial professions) suggestion that it is our fault somehow for using the damn pain relief that they provided us with in the first place,

no offence intended to anyone who has posted on this, just my rant for the day, as yet another family occasion has been tainted by a migraine,

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