rough couple years

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rough couple years

Post  joeyd123 on Wed Sep 17, 2014 7:12 pm

I am new to this forum and would like to talk with people who can understand my pain when it comes to migraines. I dont even know where to begin i have had "headaches" my whole life since i was 9 years old. It wasn't until 2012 when the worst years of my life started I was diagnosed with Chronic Migraines in august of 2012 i had a migraine last 5 straight days with no relief. I wanted to go to the hospital so bad i could cry but i know they will just help this one time for $1000+ and send me on my way. I have tried countless prescriptions gone to Neurologists in the first year i was diagnosed i was prescribed 17 different prescriptions and not one helped even a little bit. The only thing that helps was the Anti nausea which only prevents me puking my brains out when i get one which seems more often then not. I have gone to Acupuncture, Chiropractors had blood tests to see if my metabolic rates were alright. I tried going glutton free and sugar free foods for months to see if my blood sugar was to high. did food allergy tests, I tried anxiety meds tried doing stress programs. Im running out of options and i don't know what to do anymore i had to drop out of college got fired from my job. I get roughly 15-27 migraines every month. Some months are worse then others. Who wants to hire someone who gets a migraine 4-5 days a week. I feel like i should be on disability but i don't even know what that really even insists of. Its got so bad i can physically feel a migraine coming because my back of my neck to my temples and behind my ears to the top of my skull pulsates so vigorously i could almost faint. I have also tried smoking marijuana which helps at times but when it wares off its makes it 10x worse also don't like how it makes me feel. i don't mean to rant on i just have run out of options and my family is almost starting to doubt the severity of my migraines. Its been a very stress full time i would appreciate anyones feedback or personal situations that might have helped there migraines/headaches.

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Re: rough couple years

Post  Mini on Thu Sep 18, 2014 5:07 am

I am so sorry about your suffering. What you describe sounds very familiar to many of us. You are definitely not alone in the way you feel and in the way you have been treated by the medical profession.

You have obviously not been helped so far, but this does not mean that there us no more help available for you.

I am terribly sorry I am having an extremely busy day today so I cannot stay too long. But I have some questions and suggestions for you.

I thing the most helpful things you can do is to read as many posts here, on this forum, because people here tried just about everything and they have many useful suggestions.

One of the things you can try is to go to search and look for: triggers.
Any thread on triggers will be helpful. Also: rebounds.

I found that if you want to break up the never ending cycle of M (migraine) you can ask you doctor for a short
course of prednisolone (this is corticosteroid) five day course is safe, provided you do not do it too often. This always works.

Only see neuro who specialises in M (not all of them know much about it). Then ask if you can have a occipital nerve injection. This also helps many of us.

One important note:
Can you please, break your text because most of us cannot read one block of text, in this way you get a better response.



This is very important
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Re: rough couple years

Post  Seaine on Thu Sep 18, 2014 6:26 am

YEs it sounds like you have tried a lot but don't despair because you haven't tried everything yet and there are always more meds being developed.

Two basic things you should try:

1.  Try getting a triptan such as Imitrex to take when you get a migraine.  In your post I am not sure if you said this.  It's not a preventative but it's a lifesaver for many of us who the preventatives don't work for.

2.  I know you said you tried gluten and sugar free.  One thing you can try instead, is FOOD COLORING free - there is no allergy test for this you just have to eliminate it from your diet.  Some people such as myself have found that artificial food colors, such as red #40 and yellow #5 and the others, cause the migraines to be unbearable.  I was astounded at the reduced level of pain and symptoms when I cut out food coloring.  No more nausea with my migraines, much less light and sound sensitivity, FAR REDUCED pain level, my rescue medicine works much better!  In addition I also used to suffer from IBS, which turns out was caused by food coloring, and emotional mood swings.  Long story short, it is definitely worth a try for you.  I get 25-30 migraines per month so you and I are on a similar level as far as that.

You may wonder what kinds of foods to look for, check every ingredient list until you know what contains it.  Don't forget to check any medicines you may be taking for food coloring - if they are not working anyways you may consider discontinuing them after asking your doctor.  But first cut it out from all foods and drinks and you may see a difference in how much you can function.

There are also many other things on this forum which I had never heard of before coming here so look around when you get the chance.
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Re: rough couple years

Post  ConcordGrape on Fri Sep 19, 2014 8:01 pm

Ditto what others have said--read the forums here and you will find a wealth of information.

Small tricks will give you some relief. I like putting a small dab of tiger balm on my head in between my eyebrows, on my temples, and the bones behind my ear for a little relief. This works better than a cold cloth sometimes. There is a thread on here about wasabi powder, if you dare... (I haven't)

One thing that helped me when my headaches were at their worst, was changing my attitude to focus on the times when I didn't have pain, or when the pain wasn't so bad. How many seconds, minutes, hours of relief did you get in a day? Write it down, and keep a calendar. It adds up! As hard as it is, really try to not think about all that you are "missing" because of headaches--this is a never ending downward spiral, that I think just perpetuates the migraine cycle.

Re: Disability
I have not applied for disability but I seriously considered it after I lost my job due to migraine. Depending on how old you are, you will need a certain number of credits to qualify (meaning you need to have earned some income). This amount is not high for the average person, but if you have been struggling to work because of headaches, you might find the numbers more intimidating. If you do decide to apply, I strongly encourage you to find a lawyer to help you. Your state should have attorneys available. Most people do not receive disability benefits the first time they apply, but having an attorney help you through the process increases your chances greatly.
Other than that, just make sure you have all the documentation you need: all your doctor's paperwork documenting your condition, exact dates of what medication you took and when, treatments you've tried, lab tests, EVERYTHING. If you think you have everything, give them MORE. Migraine is not "technically" a disability by the US Gov't, so you have to prove it is just a disabling as say, epilepsy.

Another wealth of information is the Chronic Migraine Awareness Facebook group. This is where I found out a lot of this disability information, and they regularly post FAQ about migraine from members.
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Re: rough couple years

Post  Seaine on Sat Sep 20, 2014 4:30 am

Yes disability may be an option for you and that reminds me - My sister just got a certain type of disability. I think it may be a new thing under Obamacare. But basically she turned 26 so she had to stop being on my dad's insurance, but she can't work due to fibromyalgia and other health issues. She got a doctor to sign some sort of disability form and send it in, and the insurance company put her back on my dad's insurance. So I don't think she gets disability money or anything like that, but she now has health insurance again without having to pay extra for it.
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Re: rough couple years

Post  joeyd123 on Sat Sep 20, 2014 6:43 am

Thanks for all the reply's i appreciate all the positive feedback. and I have tried triptan and Imitrex neither worked for me. I had a doctors visit yesterday on friday i have had the same Migraine since Monday night no matter how much i sleep or the water i drink it will not go away.
Im 25 years old so soon i will be off my parents insurance at the end of this year. I had a doctors visit yesterday and I was prescribed 2 more prescriptions last night Beta Blocker cant think of its name who makes up these names? I mentioned the Injection to my doctor and he didn't think it would help either he said those were great 5-10+ years ago but with technology now a days it does the same as as most modernized prescriptions do.
My next step if these pills i take don't work is the botox injections. I really hope it doesn't come to that, I have heard nightmare stories from people who get the botox for migraine's. Im willing to just about do or take anything so i don't feel this headaches/migraines. I envy people who don't get migraines. I would rather have a broken bone or a severe burn then these migraines.

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Re: rough couple years

Post  lorente on Sat Sep 20, 2014 7:55 am

I'm so sorry you're suffering. We have all gone through what you're going through, so if you read the posts on this board, I'm sure you'll find more things to try.

Migraines are not just food-related. Mine are also triggered by thunderstorms and change in barometric pressure; lack of sleep; flashing lights...please search "triggers" on this board to learn about them.

I am currently using the Cefaly headband (search on "Cefaly." I've posted on this before.), and it works better than any medication or other treatment I've had (and I'm 63 and have had migraines most of my life). Acupuncture also helped me, but it had to be ongoing treatment to keep working, and my insurance doesn't cover it anymore. The other thing that helped me when I was your age was to go off birth control pills (if you're on them. OTOH, when I hit menopause, it helped to add hormones.)

Best of luck to you.


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Re: rough couple years

Post  Mini on Sat Sep 20, 2014 12:19 pm

I am sorry, I am not sure how up to date your doctor is (is he a neurologist who specialises in migraine?) but he does not seem to understand the nature of the condition. The direct localised injection of lidocaine and steroid  right into the occipital nerve region at the bottom of your scull, is not the same as the prescritions medicine taken  internally. I (and some other people here) had few of them over the last few years and found them very helpful. Of course there is never guarantee, as we all react differently.

IN any case if he said that there are there are the same prescription which have the same effect why didn't he give you any? The main benefit of the injection is that it does not cause the  severe side effects that the same medicines would give you if taken orally.


It might be a good idea whilst you are still on your parents insurance to change your doctor, and find someone who is true M specialist. Do some serious internet search, find out what is avaialable, and do not worry about change, many of us had to try more then one doctor, until we found someone who knew what they were doing.

It seem that this doctor does not have up to date specialised knowledge to help you. Beta blockers are preventatives and take ages to kick in, before you will even know if they work for you, or not.

They did nothing for me exept make me sleepy and r=tired all the time. I am now on Gabapentin (another preventative) and find this helpful, my M are no more as intensive or frequent.
You have to keep trying.

Sadly there is no cure for M but  there are many ways to deal with it step, by little step. It is all a question of management, rather then getting rid of the problem once and for all. But you get improvement in quality of life the more you try, the more you know about it.

Read about triggers - this is a huge problem for most of us. The list is endless.

We have been through what you are going through, so each one of us, wishes you that you will find some relief soon. But you need to take charge and fight for it. It is surprising how many doctors know so little about the condition. even when they pretend that they do. So, do not put up with second best.
It will get better, Eventually.
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