How bad is your migraine?

How much does it impact on your life.
On another forum it was spoken as 100% housebound.
That is almost my situation. Day after day I sit on this couch.
I cannot go out, and dont feel like seeing people.
Although most cant be bothered with me anymore it seems, I lost a lot of friends due to migraine.

So I am not 100%. I am probably 85%.
I get about for about an hour at a time...locally, maybe once a week.
It had been twice.

How much life have you lost due to migraine?

I think mine would be as bad as yours Pen if it wasn't for my abortives that work. I get them 2-4 times a week but can abort them at least 95% of the time so my life isn't affected much other than still worrying about the ones that do sneak in. When I do get one, it is bad--in bed, no light, no TV, no reading, nothing. Even getting to the ER is sometimes too hard.

I so envy you (do I call you Ann?). If I had as much joy with abortives as you do I think we would be in the same place.

I am hoping, as there are new drugs coming out, one of them might do for me what yours does for you...

Sure wish you could try my Migranol. i almost panic if I'm running low. I don't think there is a chance of MOH either. My doctor doesn't seem concerned. You can call me anything you want. I'm not incognito. I'm just waiting for someone else at work to find this website.

Linda, no one else at work can find this website....do you want them to?
You need to tell me and I will invite them. It is private for now, and no one gets in unless I say so.....just for now. I am still learning here...

I wish I could try it too, but when I asked, I was told no...BUT they are coming out with one later this year as an asthma type inhaler which is the same drug...Here's hoping...

Right now...it's sort of like I'm holding my breath waiting for the shoe to drop.

I went from almost completely housebound for 6 months to having a mild one once a week.

When I do get one, I'm really not in any shape to be out in public. I have gabapentin for pain, compazine for nausea, maxalt and fioricet (as my last resort). I almost can't be on the phone with one either, such fog and s/e drive me nuts.

I hate to admit this, but I'm afraid to leave my work laptop at work. I'm still afraid of getting a humdinger and not being able to do things as I need to at home. I know this is a bit illogical as I can look at my journal and tell that I'm likely to be fine...migraines I think have loosened a few screws.

I feel the same everyday Heeler Lady. I always leave work with the intention that I may not make it the next day even though I have rarely missed work.

Pen just call me Linda then. I don't want people to know I am chatting during work, even though everybody does it. That's all. Same with Facebook. It is funny that even though just about everyone at work is on it, none of us are"friends".

Whatever is best for you Linda....

I don't know if my approach is correct and maybe one day I'll pay for it but I try to live my life as if migraine did not exist.
This means that wherever I am and whatever I'm doing I don't think twice to use my cafergot and abort migraine.
Some people think that I'm crazy to use cafergot 2/3 times a week and that I should at least go home and have rest when I take it.
Instead, I continue to work, to travel, to prepare dinner, to iron, to shop.

Maybe a more wait&rest approach would help me to reduce drugs but life is only one and I don't want to miss things....

I dont know much about Cafergot Antonella, but I applaud your attitude.
YOu may have migraine but it isnt having you....

Keep doing what works for you.
You are right, this is NOT a rehearsal....

P

Ditto Antonella!!! Exactly what I do. It is my miracle drug, and you are the only other one I know that uses it and the only one I know that is as migraine-free as me. Pen - Cafergot is Migranol. I also think exactly like you as far as life is too short to miss ANYTHING. If I have to take this drug rest of my life, at least I have a life. I work with one of the best cardiologists in the world and he didn't hesitate to recommend that. Also, my own doctor isn't worried about over using it either. I use it about the same as Antonella. The drug has been around forever, and I can't understand why more people don't use it. I'm actually using it under the brand name Migranol, but I guess it is pretty much the same thing, but of course costs more because it is a "new" drug. They probably added just enough of something to patten it for money and to single it out for migraine only.

Linda, does your cardiologist have anything to say about Triptans at all?
I never hear anything.....

We are supposed to be getting this new inhaler this year.
It has DHE 45 and is called Levadex....

have a look, its supposed to be even better because it gets into the system quicker.

I will be hoping to try it...

That's it Pen!! Same thing. And it does work instantly if taken soon enough. Same medicine, different name.

No, cardiologist never even brought triptans up. This guy is brilliant. He gets grants in the hundreds of millions and honest to a "T".

Caffergot isn't available in many countries anymore. I am surprised you guys are still able to get you hands on it. I used to take it before the launch of the triptans ages ago. I found it had far fewer side effects then the triptans. The caffeine in it also tends to keep you going (i.e. you can continue to work) whereas triptans completely knock me out for the entire day.

A few years ago my Austrian GP gave me a version of Dihydroergotamine to be inhaled through the nose. Also worked great and fast.

Still here in the UK doctors push triptans all the way.

P.

That is almost criminal if you ask me. In the US they tote it as a new migriane drug under the name Migranol. It works instantly 95% of the time inhaled. I think thousands are missing out on a good life. I know I wouldn't have a decent life without it.

Linda,

Is Migranol inhaled through the nose or mouth?

P.

Well it is coming later this year I am told. Will try to find link.
Its apparently safer (?) and faster acting because of the asthma type inhaler.

So could you ask him about Triptans....they keep mentioning hearts and triptans, and it aint in the line of hearts and flowers....

You are funny. I will ask him.

Thanks. And here is the link from our Migraine Action...

[You must be registered and logged in to see this link.]

What amazes me is that this has been around for decades. I don't know about the nasal and inhaler forms of it, but the doctor said they used to give it to women after childbirth. This is so great for you Pen. Finally, you may get some relief. On Rhonda's Antonella was the only other one besides me that took it regularly and one of the few on the board happy with our medication.
I know with the nasal form it goes straight to your head so the results are quick. The inhaler may work the same.

Well the suggestion is the new rota-haler type things will work even quicker and is safer (not sure from what).

Just because it gets put out there doesn't mean we will get to use it.
They will probably find all kinds of reasons not to prescribe it right away.
I can speak more freely here without getting shouted down, but the NHS has many strengths.....speed is not one of them..

Pen,

We do not know what is going on behind the scenes.
I am sure pharma companies are merciless blood hounds when it comes to pushing their own products. We also don't know to what degree they are incentivizing GPs to prescribe certain drugs.

I know a doc in Germany who flits around from one medical conference to the next. Barely a week goes by when he is not flying off to some exotic destination for a "conference". From Abu Dhabi, via South Africa to Hong Kong .... you get my drift.

I think it boils down to being more assertive with your doctors and insist on certain drugs being prescribed. I shall make use of my patient rights and insinst on being prescribed the the inhaler once it is out.

Love

P.

Yes,
I use cafergot as abortive.
Here in Italy you can find ergotamine either as CAFERGOT brand (needs a prescription) and as VIRDEX (local product, OTC - yes, OTC!!!!)
So, I don't even need a prescription to find ergotamine.

6 Cafergot suppositories cost 2.5 Euros (4 USD, less than 2 GBP)
5 Virdex suppositories cost 8 Euros (10 USD, less than 7 GBP)

The time I have to spend in my GP waiting room for a receipt is not worth the saving, so I normally buy Virdex.

Virdex still works 100% of the time. One single suppository is normally enough but in some case (5% of the attacks) it might be necessary to use 2 suppositories. When it happens, it's not due to migraine itself but to bowls absorbtion issues.

On the other hand, here in Italy nasal sprays are no longer available. My pharmacist told me that they were withdrawn because there was no use by patients. I tried them many years ago and, in fact, they did nothing.

Ciao