migraines that last over 60 days?

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migraines that last over 60 days?

Post  natalie west on Fri Feb 05, 2010 5:34 pm

I have just been diagnosed as having a complicated migraine. Basically I have had a migraine now for 67 days confirmed by MRI's, and ocular studies. It gets so bad I have complete neurological shutdowns, including losing the ability to walk, talk, and my eye muscles completely stop functioning. I have been hospitalized from 3 days to a week, and am currently on a regimine of about 13 different medications to "control" the migraines. Leaving me, however; to deal with the brutal side effects of these preventative drugs. Have any of you ever had this type of migraine, or heard of anyone who has? I feel so alone, and I don't think they are ever going to go away. I just one 1 pain free day!
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Re: migraines that last over 60 days?

Post  Rachel328 on Fri Feb 05, 2010 6:07 pm

Welcome.

You are in the right place. We all have different migraines and symptoms and medications, but we're all migraneurs. I personally have had a migraine for five and a half months. I didn't know that could happen until it happened to me. I don't have the same neurological sysmptoms as you, but I know the type of pain you are in.

13 meds? Wow. I hope they are helping. I hope you and your doctor have a plan.

I recently switched doctors and medicines. I can feel a change. But that's just my story. Feel free to share more of yours. This is a safe place.

Rachel

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Re: migraines that last over 60 days?

Post  tecky on Fri Feb 05, 2010 6:13 pm

Oh, Natalie, I'm sorry you're suffering so. I don't have complicated migraine but have chronic migraine, so I understand the unending pain.

Please know we understand and are here to support you. Keep trying to find something to help. There has to be something out there for each of us--it's just that we have to find it. Keep up the hope and hang in there.

Becky I love you
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M that last over 60 days

Post  rileyoday on Fri Feb 05, 2010 9:10 pm

I beleive your M is the worst I have read about... I have read about many preventives and treatments,

I see not everyone will have the same results ... I hope yours is found soon. I ask how could you be on so many things at the same time you will not know which one is working if you do feel better.?

Did you just start having M ?

I have had 4-5 M a week for 6 years and three months ago I saw a new DR. for the first time he wrote me a new script and I have only had 2 M in three months. I hope you have relief soon.

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Re: migraines that last over 60 days?

Post  Stillhurtin on Fri Feb 05, 2010 9:32 pm

Natalie,
I wish I had some helpful advice for you. The only thing I can offer is that you have secured one CRUCIAL part of living through this terrible disease... A strong support system! The people on this forum are extremely understanding and knowledgeable, but above all, we GET IT. When you feel like doctors, family, employers, friends, co-workers....all kind of pretend to understand and sympathize but your frustrated cuz they don't reeeeaaaallly get it...... Come here!!!

We may not be able to offer a miracle cure ( cuz if there was one we wouldn't be here ) BUT we will listen and understand and share.

I hope you have a trusting relationship w your doctor, bc 13 meds is a lot. I know I get freaked out when my doc thinks about adding a third or fourth. And sometimes the side effects can be worse than the ailment they are used for!!!

Wishing you well!!!
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Re: migraines that last over 60 days?

Post  HeelerLady on Fri Feb 05, 2010 9:50 pm

Natalie,

You are not alone. I have had a migraine every day since some time in June 2009 - not to the severity that you experience but it definitely isn't pleasant. My doctor has a term for the condition but I'll be darned if I can remember what it is right now. Right now it is day by day - some days good, some bad. The good days I function pretty well - it's just an irritant, more pressure and not so much pain. The bad days...well we all know what bad days are like. The drugs...well everyone responds differently to them. I'm currently on plan C, probably will be going to plan D as A - C haven't worked out so well. One thing I will say is if you feel worse on a medication, call your doctor. I've done this as the medication shouldn't be worse than the M. Also, if you notice something strange, call you doctor. I had started getting double vision and thought it was just my symptoms changing and wanted to check with the nurse to see if she had suggestions on coping with that lovely development. Long story short - my M meds were interacting with each other, making my symptoms worse, and I couldn't see a darn thing.

I am a little surprised they have you on 13 drugs. But then again, there is probably a mix of things and not just preventatives. Usually you can't mix a lot of the preventatives - some don't play nice with each other and can make things worse. I know after my first appointment I walked out with enough medications to feel like a walking pharmacy. Yes I carry them around but most I only use rarely.

Just know you are so not alone and there are others that share your pain and would love a pain free day. I work with someone that used to be chronic and hers got resolved. Her comment - it's freedom, not to have to deal with the pain or wait for the next one to descend. It's out there, hang in there!

Becky
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Re: migraines that last over 60 days?

Post  Kate on Sat Feb 06, 2010 9:48 pm

I had a non stop really bad migraine for 6 months straight. I couldn`t sleep because it hurt so bad. The only relief I had was for 1 day because I had a shot of demerol.I was able to sleep after that but of course when the drug wore off, I was back in major pain again. That 6 month cycle finally broke.Before that I was getting a 1-2 month major migraine. Now it`s at least one month and the cycle will break.

In between it`s mostly non-stop but not necessarly a major one. I know how miserable it is. I wish there was an answer.

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Re: migraines that last over 60 days?

Post  estre004 on Mon Feb 08, 2010 10:57 am

I'm sure you have tried some breakthrough drugs. I agree with whoever said that how are you going to know what works if you are taking 13 medications. Even for those of us taking a few, it is complicated as to what is actually working. I would question your doctor about this. Best of luck. Let us know how you are doing.

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RE: Migraine that won't go away

Post  natalie west on Wed Feb 10, 2010 6:23 pm

It is alarming at the amount of medication that I am on, and so far it all seems to be effective on one level. Here is what I take:
Depicote
Verpamil
Vicodin as needed
Percecet as needed
Fentanyl patches
Levothyroxine for thyroid? not sure why on this one
Ambien so i can sleep
Topamax
Zyprexa
Prednisone which i hate but when i go off of it my optic nerves swell up and i loose muscle control in my eyes
lorazipam for panic attacks,
and we just dropped two on monday. so there is my medication lists

I talk to my doctor about my meds alot, and we have tried many combinations of things, and so far they have intensified with the change in dosage or landed me back in the hospital. Minor changes sometimes create major results. I am getting a new MRI this week. I am hopeful that it will give me some new answers but so far I am stumped.

The truth is my Doctor has told me that I am a challenge for him. He has been very good in contacting collegues in his field, and they have not been able to give him any advice or answers. The most unfortunate part is that I have to take meds to lessen the side effects of some that help the M. For example the Verapamil helps the most but it makes me hallucinate, and go practically insane, so i have to take the Zyprexa to stop the insanity. I am so swollen from the Prednisone, and most of my friends and aquaintences tell me I look like I have cancer. The Depicote is causing my hair to fall out as well. I am also suffering from the redistribution of fat from the prednisone, so i have the hunch back and the belly swelling. I look more like i am pregnant now than when i had my children. So all the time i am trying to manage this headache, and all these other physical symptoms I am trying to raise my 15 month old and my 10 year old. It is very hard. Some days I just cannot do it, my Mom and husband have saved me so many times. I am glad to know that I am not alone, although I hate to hear that so many people have so many stories about chronic pain and adversity. It doesn't seem fair that there is no one way to help people who suffer so badly. I want to thank all of you for sharing your stories with me. It has been very encouraging that i will get help, and they will get managed.
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Re: migraines that last over 60 days?

Post  estre004 on Thu Feb 11, 2010 8:33 am

Question - did these migraines get this bad after you were already on these medications or did they start before the medications?

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