Migraine

My vent or gripe is this. In November I had a hysterectomy and was dx post-op w/ a very rare cancer. No one knows how to treat it but it is indolent (slow growing). It has a 50% recurrance rate. Lucky me, huh?

Anyway, I have a difficult time making people understand that I will NOT consider any treatment that puts me at risk for increased migraines. I barely live right now. If they increase anymore I might as well throw in the towel.

People think a dx of cancer is THE worst thing that can happen. I have it and its not. I promise you it is not for me. Of course, I undrstand mine is slow growing but it still is not worse than the migraines.

The current one has been w/ me for over 4 weeks now. I have chronic daily headpain that does NOT get treated. I have to have neuro and/or GI symptoms to add to the increased headpain to call it a migraine and it has been w/ me in that form for 4 weeks now.

Thanks for listening

Survivor,
I am sorry you have having to go through so much at one time. It sounds as if you are having to chooe to treat one thing over another and yes, people don't understand that. Cancer is something real they can understand. Migraine disease isn't so tangible to most people. They would not understand that decision.

There are many people on this forum with multiple diseases who probably far better understand what you are going through. But do know you are in my thoughs and prays.

Cindy

What a horrible combination! I can understand your reluctance to make your migraines worse.

I've got chronic daily head pain, too. I have one or two relatively pain-free days a month. I'm seeing a new specialist, and we're adjusting my meds. She says that Lyrica is great for decreasing frequency.

I have had no experience that could make me possibly understand what you're going through. But try to air off what other people say. Your opinion is the only one that matters. And after all, the recurrence rate isn't 100%.

Gretchen in Mississippi

Hi Survivor,

First.. I am so sorry that you are going through such a rough time. Having migraines alone is hard enough, but to have to fight two diseases at one time can sometimes seem unsurmountable. But, I believe there is always Hope.

Even though I don't not know first hand about battling two disease, I do have many in my family that do. For example, I have a newphew, like you, whom had a rare form of cancer and migraines, he is a survivor. He fought and won. There are many on the board, who will probably chime in who have multiple diseases.

You have come to a great place to find information on different preventative that may work. I remember from your intro that you have had migraine since age 2 and have tried many different kinds. But, remember if one doesn't work another might. Also, there are supplements that may help.

Also, I think it is important that both your onocolgist and your Migraine specialist work together. If they are not working together. And if you are NOT getting treated for chronic headpain, then in my opinion, You may need a new doctor. There is a list of Migraine specialist on the website if you need it. (Other's may be able to give you the links, I not that computer savy yet)

Again, I know how frustrating this disease can be. Know that we are here to support you and know that there is Hope.


Dar

Hi Survivor!

My goodness! You've been through so much!!

Gretchen is exactly right--your doctors really DO need to work together to find the treatment that's best for you. What good is living life if you're so full of pain that you can't enjoy it?

Do you see a HA specialist? It may be important for you to find one--especially one who is open to working cooperatively with your oncologist. (We have a list of recommended specialists HERE.)

I sure hope you are able to find a med combo that will manage your head pain more effectively. You certainly deserve some pain-free time!!! You may also want to read our info on Status Migrainous. 4 weeks is DEFNINELY too long to have a migraine!!!

jenny

Hi Survivor -

I just wanted to add a hello. I hope the advice about getting your doctors working together helps. I agree with you on the quality of life issue - migraines do steal that, and we need to be able to live day to day. I hope you can get some relief from your current head pain. yu do need to break this migraine cycle!

I have chronic sinus infections, chronic fatigue, allergies, thyroid disease and irritable bowel syndrome along with the migraines. I'm not managing a major life threatening illness (except Migraine can be in rare cases), all of my illnesses are quality of life thieves. But I can relate - no medications that will increase the migraines! I can cope with a lot of other things better than that head pain!

- Megs

That's an excellent way of putting it, Megs. Pesky, beastly bandits!

quote:

Originally posted by nutmegan:

all of my illnesses are quality of life thieves.

- Megs

Survivor

I think I know just what you're getting at. Apart from cancers, a lot of the other icks we get aren't very predictable. There's no way to know how or when things might shake out. A lot of times, there is no end to things. And it's a lot harder when things aren't predictable in any way, which is a lot more frustrating, because it's harder to get a handle on. My heart certainly goes out to you.