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On going migraine for 5 months. I'm Desperate

Hi,

New here, I'm a perfectly healthy 23 year old male who's been suffering with a persistent migraine for 5 MONTHS, yes that's 20 WEEKS. The pain is always there, 24/7.

Me and my doctors have tried every kind of headache medication possible.... OTC painkillers, naproxen, antidepressants (amitriptyline and nortrIptyline), migraine tablets (pizotifen and sumatriptan) beta blockers (propranolol) etc.

Lifestyle changes such as relaxation exercises, deep tissue massages. Alternative treatment from other specialists like a chiropractor, osteopath and even a bloody hypnotist.... nothing is working!

My symptoms are out of control and are different every day which makes pain management impossible. Just to list a few:

- All over head pain, mostly on right side, pressure and tightness
- Tension headache
- Sinus pain, sometimes gets so bad I feel like I'm struggling to breathe
- Stiff neck and frequent muscle contraction spasms
- Jaw aches and tooth aches
- Pain behind and around eyes and temples, ranging from burning to sharp stabbing
- Light sensitivity particularly against white surfaces
- Visual disturbances (flashing sparkly lights)

The pain is widespread, but it's always there, every single day I am in agony. I feel lost and very depressed, it's ruining my life.

I have experienced migraines before, but very sporadically and have never really been much of a problem (thankfully, until now), I would get one once every 2 or 3 years which lasted no longer than 48 hours. However this one began as usual with aura, then relapsed into this chronic state of pain I'm currently in.

My doctors seem to think it's migraine with tension headache, and they've now referred me to a neurologist who I'm expected to see early next year. But I'm left puzzled due to the fact that migraine headaches don't typically last for months of end. I'm aware of chronic migraine, from what I understand is a series of individual migraine attacks which occur almost everyday? However, I have had ONE migraine which isn't letting up. I need to stress this point because my condition seems quite unique compared with other people, which makes things all the more worrying.

I will be happy to share more details, any ideas of what's going on?

  1. I'm so sorry this is going on. It's good that you are seeking the treatment of further specialists. I hope they can find some answers for you. You mentioned some of the preventatives you have tried. By chance, have you tried botox? You talked about jaw/tooth pain, which made me think of TMJ issues and grinding at night. A visit to your dentist could get you more information on that, as they can figure out if you grind by looking at your teeth. They can fit you with a splint that you wear at night that will help alleviate some of the grinding (although I still try to grind even with mine.) Botox helps me to grind less, I feel like, and alleviates some of my jaw pain in those weeks when it's fresh.

    You also mentioned light sensitivity. Have you checked the lights/screens in your house to make sure they are as friendly as possible to someone who is light sensitive? One of my neuro-opthamologists recommends only incandescent bulbs for people who are photophobic as they emit the least amount of flicker. In terms of screens, I haven't found a good work-around for TV/video games/movies, so I had to give those up. For computers, they have a wide variety of screens for light sensitivity, including filters you can attach over the screen you already have, LED screens where you can turn down the blue, and for extremely light sensitive people who cannot tolerate any light or flicker, an e-ink screen made by Dasung called Paperlike.

    Chronic migraine can look like separte attacks, but it can also during bad periods look like one long attack. My neurologist likes to describe it by saying whatever happened in your brain the week before affects what will happen this week. So if you had constant migraines last week, your brain is pissed off and super sensitized to everything... very prone to falling back into that pattern. It's important to break out of the pattern. (Which always super frustrates me when she saysthat to me and I'm in the middle of a months-long attack.)

    -Did anything happen prior to this attack coming on? Car accident? Hit your head? Anything even months before? Has your doctor done any testing/imaging?

    -Have you checked out information on migraine elimination diets to see if what you are eating every day could contain migraine triggers? When I first randomly got sick like you (and my onset was very much like yours--sudden and day after day of migraines), I didn't realize the foods I had always eaten were now something my changed body was oversensitized to.

    -Another thing you might ask your neurologist about is infusions. You can get a bunch of different things in an infusion, so you'd have to talk to your doctor, but for some people they are another option for stopping migraines that don't stop the usual way.

    1. I get a combo of cluster and migraines. I want to drive a spike into my temple . I get up to 5 per day for 3 to 4 months straight. Tried all kinds of meds . Some didn't work at all sone works but only for a short time. I had a bitox injection in the back of my head. It didn't work and I had a migraine by the time I got back to my car. The only thing that worked that my neurologist used as a last resort was oxygen. See if ur doc will prescribe an oxygen tank and I hope it helps you as well as it heloed me. It worked within 10 min every time. Good luck. These suck and aren't fun. It passes me off when people think migraines are just bad headaches. They gave no idea and wouldn't say that if they ever had one before. Huge difference.

    2. Chelle2169,
      Thank you for sharing this information on cluster headaches. I don't have them, but I have heard that oxygen is an excellent therapy for them.
      ~ Peggy (Migraine.com team)

  2. I understand your feelings I have had a constant Migraine for Years & have tried nearly everything even Botox so now I know it can get very depressing because the Pain never goes away, I take Vicodin, Soma & Xanax, Vicodin helps with the pain, Soma helps with the neck stiffness & pain & the Xanax helps with the Anxiety. None of these make all the pain go totally away but the help!! Good Luck 7 Semper Fidelis!!!

    1. Yup, infusion is an IV drip. They can give you all sorts of different meds that your brain may respond to if it didn't respond to first line migraine meds like triptans. Infusion is not the first thing one does for migraine, but it's super helpful if you can't get rid of them by triptans and other easier means. They have helped end some of my months-long migraines.

      Alcohol is a very common/potent migraine trigger. Not sure what one eats at a British barbeque, but virtually every food we commonly eat at a US barbeque except maybe corn would be a trigger for me. I might suggest looking over Kerrie Smyre's migraine elimination diet list and see if there are foods on there you are eating?

      https://migraine.com/blog/elimination-diet-foods-to-eat-foods-to-avoid/

      One thing to consider is that you may have been able to eat a food your entire life, but it can become a trigger. And, I know this list looks super scary and restrictive, but if you've had a five month headache and nothing else is working, it might be worth it to try sticking to a restricted diet for a month and see if that changes your headache pattern.

      And (I know this is hard) if you can't pin down anything that happened right around that time, you might need to start looking for what is happening day after day that is continuing to re-trigger you. Even if you did eat something that day, it's probably not what is making you sick five months later. Have they done an MRI or lumbar puncture or anything to rule out other causes that could explain sudden onset? (mine was sudden onset and wound up being a CSF leak, but it took them three years to order the test that caught it). I would suggest requesting all standard testing to rule everything out. I would also examine my lifestyle, eating, environment, everything, for things that could be irritating my brain. Be very observant about when you feel better, when you feel worse.

      Caffeine is a problem for a lot of people with migraine. Your brain super loves it because it shrinks your blood vessels while you're on it, but then the moment it wears off, you go into withdrawal, which in anyone with a migraine brain can equal insta-migraine. My neurologist recommends no more than one small caffeinated beverage per day. I can't even tolerate that fluctuation, so I drink peppermint tea.

      1. It was about three months before I went to the ER.
        I also had a CAT scan prior to the spinal tap. Plus many blood tests which showed nothing.
        The Dr said my meningitis was caused by a sinus infection left untreated in addition to an untreated UTI. Sounds odd, I know. That’s one thing that was never completed-a urine test.
        If all else fails, get a spinal tap. The neurologist kinda laughed when he said it would give me a headache. Good luck to you !

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