Migraine

Well, I was beginning to think I was the only person who suffered with migraines longer than the typically quoted "..up to 72 hours." I've suffered migraines since I was a child and over the past years they have progress to lasting weeks. The one I have now is on week 4. Regrettably the IV DHE therapy didn't work.

This time I needed to reach out and find others like me as well as start to reeducate myself on this disease. I'm beginning to learn things I had forgotten and things I just didn't know. I've bought some books "The Headache Prevention Cookbook,"Living Well With Migraine Disease and Headaches..." started accupunture, doing research, and found you all. I'm not alone. That alone has been a help.

I've been through a lot of preventative medications that haven't worked. But I'm learning there are still a lot out there. The wealth of information you have here is incredible.

Hi Sherri -

Welcome! I was very happy to find all the info here when I joined, too. I did lots of research 4 1/2 years ago when my migraines first got bad, and Teri Robert hadn't published her book yet, and all this wonderful stuff wasn't here yet! i was thrilled to find it when I resumed my research a few months ago. Anyway, a big welcome to you. Ask any questions you've got and folks will be along to answer.

For those long-lasting migraines, be sure you read about Status Migrainous so you know when to get emergency intervention!

See you around the forum!

- Megs

Hi, Sherry, welcome to the forum. We're glad you found us. No, you are certainly not alone.

Keep trying to get that migraine broken. It's important. If the DHE didn't work, does your doctor or the ER have something else up their sleeve to try?

If you have any questions, ask away.

Sherri

Welcome-
You've found the best site on the net, at least in my opinion. I too have suffered from migraines lasting longer than 72 hours but not status migrainous. I had daily migraines that several neurologists diagnosed as "rebound" and kept putting me into status and then not responding to the emergency. I have been in status for up to 14 days at least 10 times. I finally found a doc who, after 2 back to back hospitalizations diagnosed primary daily migraine and began to treat with daily zomig nasal spray (not a really happy solution--you can imagine getting that preauthorized by insurance) not to mention that I kinda worried about how all that might affect my heart. But I decided I'd rather die of a heart attack than be disabled by the miserable daily headaches so I accepted the treatment.

Meanwhile I kept reading, researching, etc. Then I had a hip replacement (which I had needed for at least 5 years, but had refused to do because I thought I would have to quit horseback riding), and the daily headaches stopped!!!!! Now I have one every 7-14 days, which are never severe, although they usually last 48 to 72 hours.

Since I read Terri's book, I don't see the crazy neurologist anymore either. I fired him and 2 other docs since then. I'm doing SUPER with an educated, sympathetic internist.

The point is--this is the place to learn. It may take you a while to find the answer, but there's an answer out there. Try not to get discouraged, and on your down days just come to the site--there's someone who'll cheer you up, promise!

Tracie

Hi Sherri,

Welcome to the forum, we're glad you found us.

Breaking your current Migraine cycle is very important, a call to your doctor is in order. Has he ever used steroids to break a Migraine before? That may be something to consider.

Clearly, your preventive plan is not working, so let's see what we can do to help you with that. It may feel like you have tried so many different preventives, but with over 100 medications used to treat Migraine disease, there are many options left. So try not to lose hope.Migraine Preventive Medications - Too Many Options To Give Up!

How about seeing a Migraine specialist? We have a patient recommended list you can see HERE. This doctor is an expert in Migraine disease and headache disorders.

We look forward to hearing more from you.

Hi Sherrie!

Welcome to the forum and to our forum family. As Nancy said above, it's crucial that you break this migraine- I wish you the best in working with your doctor to find something that Will break the cycle.

When you DO get to feeling better, here's another book for you to read- Teri Robert's book. It really is a great tool for understanding the disease that we all suffer from, and provides real life examples of how people handled situations that are common to migraineurs. Here's a description of her book and a link to a review of the book for you.


"Living Well With Migraine Disease and Headaches" - Review
Review of "Living Well With Migraine Disease and Headaches" by Teri Robert. From definitions of types of Migraines and headaches to commonly used medications in the treatment of Migraines and headache diseases, to self-advocacy and dealing with family issues, this book has it all.


My copy of this book is covered in highlighter, pen marks and other notes in the margin. I can't say how much I learned- and I'd read loads of migraine and headache books before attacking Teri's. It was in a class of its own!

Again, welcome, and I hope your migraine is aborted really really soon.

Hi Sherri, just wanted to add my welcome to the pile. Let us know if you have any other questions, and do let us know what your doctor says.

quote:

Originally posted by nutmegan:
For those long-lasting migraines, be sure you read about Status Migrainous so you know when to get emergency intervention!

Thank you so much. This is something that I had not known about. I have spots showing on MRI and wondered if it was from letting them go. My doctor has never mentioned going to the hospital after long hours at the maximum pain. And when I'm like that, I'm single and alone, I just curl up and hide. I feel too sick to deal with the emergency room. Lately I've become far more concerned about the way I'm "feeling." You've given me something to think about and look into. Thanks

quote:

Originally posted by tracieB:

Try not to get discouraged, and on your down days just come to the site--there's someone who'll cheer you up, promise!

Thanks I think that is the one thing I need more than anything else right now. My "dark days" have been lasting longer and I think hearing from the people who actually understand will be a big help.

quote:

Originally posted by Nancy Bonk:
Hi Sherri,

Welcome to the forum, we're glad you found us.

Breaking your current Migraine cycle is very important, a call to your doctor is in order. Has he ever used steroids to break a Migraine before? That may be something to consider.

Oh the doctor has been seen me and talked to me. Steriods is one of the steps used before using the DHE. It didn't work.

quote:

Clearly, your preventive plan is not working, so let's see what we can do to help you with that. It may feel like you have tried so many different preventives, but with over 100 medications used to treat Migraine disease, there are many options left. So try not to lose hope.Migraine Preventive Medications - Too Many Options To Give Up!

This list is great. I've taken so many of these medications some didn't work, some have worked for a while then stopped, but obviously there are many more to go. But, it's time for a new doctor first. When he says he can't do any more for me and I see a list like this then I know he needs to go!

quote:

How about seeing a Migraine specialist? We have a patient recommended list you can see HERE. This doctor is an expert in Migraine disease and headache disorders.

My current nuero specializes in migraines but... anyhow I am in the process of being setup for John Hopkins Migraine specialist. Hoping they are of some help.

quote:

Originally posted by JamieHOST:
When you DO get to feeling better, here's another book for you to read- Teri Robert's book. .....

"Living Well With Migraine Disease and Headaches" - Review
Review of "Living Well With Migraine Disease and Headaches" by Teri Robert. From definitions of types of Migraines and headaches to commonly used medications in the treatment of Migraines and headache diseases, to self-advocacy and dealing with family issues, this book has it all.
Again, welcome, and I hope your migraine is aborted really really soon.

That is the book I got. I'm really looking forward to getting started reading it. You all are so wonderful with your responses and help. I am so glad I found this site!

Hi Sherri, a few more articles for you to take a look at.
Is Migraine a Progressive Brain Disease?

Headache or Migraine Emergency: ER or Urgent Care?

IV Treatment of Refractory Migraines

Preventive, Abortive and Rescue Medications - What's the Difference?

Anatomy of a Migraine

Ok, hopefully that doesn't overwhelm you but I wanted to be sure to cover my bases! Take a look at that and let us know if you have any questions!

Some hugs for you in the meantime - we are definitely here for you and do understand your pain!

Hi Sherry!

Welcome to the family!

So I'm reading through your posts and I have a question. I see that you've been in for DHE for this current migraine, but are you continuing to take abortives or OTC (over the counter) medication for the pain?

I'm asking because of the 72 hour rule and also because it may also be Medication Overuse Headache, MOH, or Rebound headache, as they used to call it. It's when you take too much of what usually helps you get rid of the pain, acutally can, yep you guess it, give you a headache.

I had this once, and it was very painfull. At first I thought it was a migraine, but then I realized it was not. Check out the article and see if that may fit you?

I'm just guessing here at this point, but I really want to see you pain free!! This migraine you've got needs to break - NOW!

Welcome again!

I hope you are doing well. Please keep us posted.

Hi Sherri, welcome to the forum

quote:

Originally posted by EileenHOST:
Hi Sherry!

Welcome to the family!

So I'm reading through your posts and I have a question. I see that you've been in for DHE for this current migraine, but are you continuing to take abortives or OTC (over the counter) medication for the pain?

During treatment (twice daily 5 days this round), either prednisone or the IV DHE I absolutely take no medications, abortive or OTC. The DHE will provide relief following a treatment, then it will return after a few hours. My previous treatments broke it on day 3. This time, by day 4 I actually thought the cycle was broken. About 18 hours later it hit me hard. I had one more treatment at that point and the DHE round was complete. My neuro and I have thoroughly ruled out rebound, this time. This is not to say that I haven't been down that road at times. It can be quite difficult to endure constant pain and abide by the "no more than 2-3 days" of medication in a week. this headache has lasted so long with long periods of severity that I must admit I'm finding it difficult to not take meds. In order to function at times it seems like the only way, and I know all it is doing is masking the pain. I'm taking vicodin now. I've not ever wanted to do that except on rare occasions.

I've been reading more about the rebound to make sure I don't mess things up before getting to John Hopkins by being in a rebound cycle. But from what I am reading rebound doesn't exhibit the typical migraine pain. My migraines are in a very specific area/vessel, usually. Personally I wish they could just take it out, yes I know that wouldn'nt really work or resolve the issue, sooooo much more goes on physically and mentally in the phases of migraine.

I thank you for keeping it in mind though. I am watching out for it.