Migraines everyday, all day, for 9 months. Help!!

Becky-Louise, I recently read your post and am in need of some answers myself on behalf of my wife who also is going through the exact same experience as you are. I truly feel for you. I have a couple of questions. Do you have any thyroid issues as my wife is suffering from Hoshimoto's Thyroid disease. She had half of her thyroid gland removed several years prior to this continuous migraine. She has always had issues with headaches but until late last year through now, nothing like this. I don't have a complete list of her medications but I do recognize a few you have been asked to take. I was recently with her at a neurologist

Becky-Louise, I recently read your post and am in need of some answers myself on behalf of my wife who also is going through the exact same experience as you are. I truly feel for you. I have a couple of questions. Do you have any thyroid issues as my wife is suffering from Hoshimoto's Thyroid disease. She had half of her thyroid gland removed several years prior to this continuous migraine. She has always had issues with headaches but until late last year through now, nothing like this. I don't have a complete list of her medications but I do recognize a few you have been asked to take. I was recently with her at a neurologist and he too wanted to check her spinal fluid which she decided against until they exhausted other treatment options ie. preventative medicines. Have you had any relief and if so could you share with me please. My wife is so low I am very worried about her.

Hi,

I have not read through all of the replies to see if anyone else mentioned this, but I had horrendous migraines following a head injury. My doctor tried me on topamax and I hated it, too.  The only two things that helped me were Zonegran (anti-seizure medication) and Imitrex (Sumatriptan). Best of luck, hun. I know that must be absolutely horrible. You may want to try some peppermint essential oil. It won't make it go away but it might dull it slightly. 

I know exactly what you're saying. I am 36 and started having migraines right after my daughter was born was I 20. I have been on so many meds to prevent migraines, to treat migraines and nothing is helping. I have been through 2 neurologist now about to start seeing a third. Tired of being in pain from the migraines every single day, being woken in the middle of the night with them, being unable to lay down because it makes the pain worse, unable to lay on my left side cuz it increases the pain. My vision was good until I was 25 and then I had to start wearing glasses. A colloid cyst was found on one of my MRI'S but neurosurgeon said the cyst and migraines are not related. When the pain is so bad that I have to go the hospital they treat me like I'm just seeking attention when really I would rather not be there, I just don't want to be in pain anymore. With each migraine more and more of my memory goes. I too am very depressed from this constent pain, it gets so bad and overwhelming that I want to just stab myself in the head just to get the pain to stop. 

I see the new neurologist at Tufts Medical Center at the end of September. It's a long month away but at least I know I have something to be hopeful for.

Hi, I just signed up to the website so that I could reply to this, after searching desperately on the internet for support.

Im 18, and have had migraines every day for over a year now, every single day, as bad as it can get. I have tried amitryptiliine, propranolol, candersarten, topiramate (never again!), pregabalin, two lots of botox, and countless triptans.

I really empathise with your situation, it is impossible to maintain a happy, independent life with the constant pain, nausea and restrictions on daily activity. My current neurologist recognises that at the moment it is getting worse rather than better, so I often feel quite hopeless.

partly I just wanted to post to say to everyone that there is someone else out here who gets it, and thats why I needed to hear from you as well. It would be great to hear from you how its going, if only so I dont feel like Im sending this out into a silent impersonal nethersphere of technology.

love and support to anyone who might find this message, even if noone replies

Just read an article today on using pure oxygen to get rid of headaches/migraines.

Also alot of people use their cpap machines (oxygen) to get rid of headaches.

It does not stop the source of the headache but might give some relief. Might try it in the dr's office and if it helps get the dr to prescribe oxygen

You are NOT over-reacting. The MRI's, Lumbar and other tests say your doctors may be taking you somewhat seriously. They just are there to treat what they can and often don't give the sense they really understand how bad this is.

I feel for you! I had this for 4 months straight. Your experience sounds crushing. But It CAN and should get better. I was diagnosed with Chronic Cluster type migraine during that time, FYI. 

Try injectable Imitrex (used most when I had that 4 month bout every day similar to what you describe) IF you can safely take that. When nothing works at all it is sometimes the only thing that does. Chronic Cluster Migraineurs say don't waste time with Triptan pills during these episodes as nothing will likely work. The injections are quite expensive (even with insurance) and the springload injector isn't pleasant but your pain might really be better. I'd gladly pay twice the price during those times! The spot on your outer thigh between muscles is by far most comfortable and freeze the site for a minute or two. I learned this from other migraineurs. 

Don't give up it WILL get better. Keep at your doctors and try more treatments including getting approved for Botox for Migraine. Again, not fun (37 shots scalp anbbut after 3 treatments I have seen some relief and many others do too. 

How long were you on Topomax? Nortriptalyne has a better side effect profile than Amitriptalyne. Has anyone suggested Verapramil? Given what you are dealing with I think it sounds as if you may trule have to find a prophylactic or combo of them to deal with this. A lot of us do. You are not alone at all.

The last thing you probably feel like is exercise but if you can do cardio or even long walks or swimming very regularly, you may start to see real relief. The data is better than many pills over time. Also, the more pills the more Rebound headaches which are proven to feed the cycle you are in and even create a Chronic situation.

There's a clinical trial of a treatment which holds great promise called Calcitonin Gene-Related Peptide. You sound like you might be a candidate so check if possible.

Have you tried Fiorinal with codeine and-as one poster mentioned, an anti-anxiety drug (clonazapam may be safer and is long acting but there are many other choices)? Many migraineurs find an assist from such meds in combination with an overall approach.

I'll be praying for and thiking of you. I hope you have and get much support as you deserve it.

 

Hi Becky. I recently turned 16 and I've been suffering with chronic migraines for nearly three years now. Last year, they were so frequent that I was simply missing out on too much school and had to be privately tutored to maintain my education. They had gotten a lot better, I'm going to a new school now but they've come back. I've had a migraine for 7 days now, unable to leave my bed at all. We've tried tons of medication but the strongest I've ever taken, left me with a muscle spasm so we're weary to take any steroids or other strong ones. Of course, over the counter medication does not help. I've seen a neurologi, had various tests done such as a MRI and CAT scan, no alarming results were shown. I also suffer from depression too because these migraines have started to ruin my life. I'm still trying to be positive as I know I'm not alone. Hang in there! <3>

Check your vitamin D levels.  In northern europe we get too little sun.  Vitamin D is essential for helping calcium into the bones and for many other things.  If your bones are suffering it can cause migraines.  I am trying this at the moment because I had terrible migraines and then tests showed I had very bad osteoporosis. The vitamin D test showed critical low levels of vitamin D.  Hope this helps those migraine sufferers.  Doctors who haven't experienced it just don't understand how it can destroy your daily life.   Another thing is, it IS very important to eat healthy and stay off sugars and unhealthy fats (fried stuff). The body copes better.

Hi Becky-Louise

I came across your letter and just felt the need to reply. Have you had any success yet with any treatments?

I also suffered from heavy migraines for about 8 years. It is something you can not really explain to anyone if you do not get it yourself. After seeing many doctors that only referred me to the next with more medication that just damaged my body further, I came across a nutritionist. She put me on a full body detox for 30 days, cleansing my liver etc. Also I could not take in any sugar,gluten or cow's milk during that time and had to change my eating habits completely. Supplements were also added. Within 2 weeks, my migraines were completely gone. My body started healing itself, due to it functioning better.

It just totally changed my mindset regarding medication. I was also at my wits end and nobody could help me and now I am painfree and healthy.

I really hope this helps and it's worth giving it a go if you maybe haven't gone down that route...

Hi,Becky... I've had Migrains for 28 years I have tried everything and anything, right now I'm about to try cervical radiofrequency, and I'm also gonna try B12 liquid. Once a day ..tried botox ..what a joke.. And had a hysterectomy, and lots of medication. I am so tired of living this way ,feel like no one understands, I am 50 now. I have done nothing with my life cause this Migraine took my life.

Hi there, I feel for you, it's the most miserable and debilitating condition.

I decided to come off all medication - the latest was nortriptaline (similar to amitryptiline). I take zolmitriplan when I migraine starts which generally works. I have gone from chronic migraines 4-5 times a week to fewer recently. I bought a titanium double magnetic bracelet which I am certain has really helped the amount and intensity of my migraines. There is also a device which I'm thinking about getting should things change. The article my mum found is 

http://www.dailymail.co.uk/health/article-3257738/Woman-spent-12-000-trying-treat-migraines-finally-gets-relief-electronic-HEADBAND.html

I feel much better coming off the medication and to be honest there is no point if you're still suffering. My consultant wrote to my doctor saying he was delighted I am only having 2-3 migraines a week - at that point I have to question if he has ever suffered a migraine. Wishing you all the best. 

Hello, I know this was over a year ago but I want to know if your headache ever went away? I am currently in the same position you are/were in. If they did go away was there anything that worked for you? 

I am freaking out because I cant live my life like this. Its been over 3 months for me and I cant take it anymore. My doctor sent me to a Neurologist and he perscribed me with amitriptyline and it doesn't seem to be working.