Migraines AND Cluster Headaches...

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Migraines AND Cluster Headaches...

Post  metalchick73 on Tue Jun 10, 2014 3:25 am

Hello all, newbie here... First of all, does anyone have migraines and cluster headaches together? I was diagnosed with chronic daily migraines seven years ago, and cluster headaches a little over two years ago. I've tried every medicine out there (just about, anyway..) including triptans, antidepressants, blood pressure medication, opiates, herbals such as melatonin and magnesium, you name it... nothing helps! And to beat it all, the one that everyone seems to talk about that might help, Imitrex, I'm allergic to!! I'm currently taking Topamax 100 mg, 2 tablets twice daily; but still no relief! I haven't been able to work in over three years because they (migraines) have become so severe that they cause me to faint/pass out from the pain and I'm a liability to any employer. I filed for disability, but trying to get disability for "headaches" is near to impossible and I've already been denied three times, the last one being a hearing. I'm at my wits end! Because I have been unemployed for the past three years, I haven't been able to go to a neurologist, but now I finally have a chance to go to the Vanderbilt Neurosciences Clinic in Nashville. It's about an hour drive from me, but I'm desperate and willing to try anything. My only problem is that I have been to SO many neurologists in the past seven years, I don't have much faith in them any more. I've had all the tests: CT, MRI, MRA, even a spinal tap and all came back inconclusive. My depression has worsened over the past year to the point that I think about killing myself constantly. I do see a therapist for the depression, but I know without getting some kind of help for the headaches, the depression won't be allieviated. Does anyone have any words of wisdom or advice? Maybe something that has helped them?
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metalchick73

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Re: migraines and cluster headaches

Post  micheletroyer on Tue Jun 10, 2014 5:20 am

I have not had a cluster headache, but I understand that they are very painful, and have seen some videos on TV with grown men banging their heads on the floor in agony.  Have you tried oxygen therapy?  I have used this successfully to diminish the pain of migraines, and have heard it is effective for cluster headaches as well.

Currently, I am being treated with Botox, with somewhat promising results; the intensity of my headaches has gone down, even though I haven't had any pain free days.

I also struggled with Disability.  I used Binder and Binder as my advocates, and had my disability approved after about 2 months.  Maybe this would be an option for you.  They do all the paperwork, including the initial application, based on your medical records and letters from your docs.

Please, please, please do not give up on life.  It's good that you are seeing a therapist, and depression can be a real bitch.  I've been there, and still struggle with feeling worthless because I am not working.

I hope something in this post can give you something to hang on to, and that Vanderbilt can offer you something new that works.

Hugs if they are welcome,
Michele
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Re: Migraines AND Cluster Headaches...

Post  Seaine on Tue Jun 10, 2014 10:38 am

Have you tried any diet changes? Some of us have found help by cutting out certain ingredients such as artificial food dyes, MSG, foods high in tannins, or even low carb diets. Search through the forums and you will find tons of topics on it. Even if it's just a small decrease in the headaches it can make a big difference in your life.
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Migraines AND Cluster Headaches...

Post  metalchick73 on Tue Jun 10, 2014 1:34 pm

Thanks to everyone for your responses!

Micheletroyer: No, I have not been able to try oxygen therapy as it is so expensive and without working it is an expense that I just cannot afford. I've also wanted to try Botox, but none of the neurologist I have seen in the past were keen on the idea. I hired a law firm to fight for my disability for me and still have been turned down. I'm now in the process where they appeal the judges' decision, thinking that the judge did not look at all of the evidence. I want to fire those lawyers because I don't think they've done a good job and haven't been as thorough as they should have been and just re-file for disability. Before, the depression was no where as bad as it is now and I think that could help my case, but I'm stuck until this decision is made (I think). Thank you for your advice, and hugs are always welcome!

Seaine: I've noticed a few foods that trigger migraines, but have not really delved deep into it. I stay away from foods high in MSG (I still mourn the loss of my beloved Chinese food!) and I've noticed that some foods (not all) that have artificial food dyes, such as red hot dogs will send me into another attack. What are Tannins though? I've never heard of them...

I'm trying to be hopeful about my appointment with Vanderbilt this Friday. Last night I had one of the worst cluster headaches yet, and yes... I was banging my head against our front door, which is steel. In those moments, all I can think about is making the pain stop any way I can. Those are the moments when suicidal thoughts and feelings are at the highest, but somehow I have found the strength to not go through with it. All I want is to be normal again. Is that too much to ask for???
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Re: Migraines AND Cluster Headaches...

Post  Mini on Tue Jun 10, 2014 2:14 pm

I am sorry you are suffering from both migraine and cluster headaches, one would be quite enough to deal with.
Cluster headaches require quite different treatment from migraines, sadly some things that work for migraine will not work for clusters, just make sure that the Dr you see is familiar with both kinds. I hope you get some support, right answers and help with your pain.
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Re: Migraines AND Cluster Headaches...

Post  Seaine on Wed Jun 11, 2014 5:50 am

A note on the artificial dyes: my reaction to them is delayed by 10-20 hours, so I didn't realize how much pain they were causing me until I quit them all cold turkey. When you feel it the next day you often don't think of that food you ate at lunch the day before.
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Re: Migraines AND Cluster Headaches...

Post  Platypus on Wed Jun 11, 2014 3:29 pm

Hi Metalchick,

I STRONGLY suggest that you make an account here:
https://www.clusterheadaches.com
and introduce yourself and your story. Those folks will get you on the path to getting relief from your clusters. If you have clusters, high flow oxygen is your abortive -- PERIOD. You are suffering needlessly if you are not using it. You can use welder's oxygen in place of medical oxygen, IT IS EXACTLY THE SAME, it is 100% safe, and it is MUCH cheaper. All the instructions can be found at the link I posted.

Have you tried Verapamil as a preventative? That's the best as far as prescription preventatives for cluster. But head over to the cluster forum and start getting educated because those folks know a TON about dealing w/ clusters.

Another option to consider is neurostimulation. The newer 4-lead technique has been very successful for both migraine and cluster. There is a fb group here:
https://www.facebook.com/groups/232392623486874/

As far as Disability goes -- it's not like it used to be. It is entirely possible to get SSDI/SSI for headache disorders now. With your comorbid depression you should have no problem. The key is you absolutely MUST have doctor's statements saying you cannot work. That cannot be fudged even slightly. If you have that and lost at the hearing level, you just got a shit judge and I'm very sorry to say will need to start over. If you have statements from both a neurologist and a psychiatrist saying you can't work due to headaches and depression respectively, you should not have a problem next time through.

Best of luck with everything!

Platy
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