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On going migraine for 5 months. I'm Desperate

  • By JMB94

    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?

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  • By GardensatNight

    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.

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    • By JMB94

      Hi GardensatNight

      Thanks for your reply. I haven’t received Botox but I’ve heard it’s commonly used to treat chronic migraines with a decent success rate, perhaps my neurologist will suggest trying it.

      TMJ did occur to me as my jaw is very stiff with lots of clicking/popping on the right side underneath my ear, however I did have a dentist appointment in October and they said everything looked fine with no evidence of grinding. I even bought a mouth guard and slept with one for a few nights but this didn’t provide any relief.

      Nothing of note happened before the attack, no head injuries or anything. I think it may have been aggravated by alcohol, though. I recall the day of having the migraine was before attending a barbecue, which involved a lot of drinking. I got pretty drunk that evening, I’ve always wondered if that’s what causing the long duration here.

      So you’re saying I could be suffering from numerous migraine attacks every day without even realizing it? Or just the one which my brain still hasn’t recovered from?

      I can’t think of anything in my diet which could have triggered this. I have a relatively healthy and varied diet, and have been able to tolerate pretty much all kinds of food my entire life. I don’t recall having anything unusual to eat the day migraine struck. I do drink a lot of tea (I’m British lol) which contains caffeine, if that helps?

      I may suggest infusion to my neurologist when the time comes, isn’t that basically like being put on IV drip? Not sure what the success rate is, and how many people with migraine receive this kind of treatment

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    • By dtrefz

      My migraines started when I was 22 and I too had/have tried every medication under the sun. At one point my headaches got like yours, and I ended up having to drop my college classes and just lay in bed all day in pain. I had an EEG an EKG, etc. and nothing. Finally, my dad took me to the ER and I had a spinal tap that found viral meningitis. I was put on massive amounts of antibiotics and within days, the headache was gone. If you continue on with the symptoms you describe, it may be worth the ER trip.

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    • By JMB94

      Hi dtrefz,

      Good to hear you made a full recovery. Funny that none of those tests could find anything! May I ask, how long did your headaches persist before going to an ER?

      I wonder if there is any way of requesting a lumber puncture/spinal tap, because I actually went to A&E a couple of weeks ago, I couldn’t bare the pain anymore. They checked my blood pressure which was fine then sent me to a GP who told me I had tension and migraine headache. She prescribed me some beta blockers which as of yet are doing nothing. Maybe the neurologist will request a spinal tap is performed.

      I’d never really considered meningitis before but it sounds plausible, I understand that bacterial one is life threatening but the viral one is less severe. I’ve already had a CT scan which came back clear and had two blood tests in August, the first one reported slightly high amount of a specific blood produced in the liver to fight infection (it was only very slightly high i must stress) the second came back clear so my doctor ruled out any infection.

      It’s worth noting that I had shingles about 9 months before my headache began, could it possibly be related to this?

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    • By GardensatNight

      The spinal tap was actually what caught my underlying condition too (mine was a CSF leak rather than menningitis, and my MRIs and CTs had all been clear, my blood pressure was fine, etc). They didn’t do it until I had been sick for three years (you should NOT wait three years… we requested it the moment we heard about it), and only after my husband and I specifically requested it be performed because one of his coworkers had one and it caught what was wrong with her after 8 years of misdiagnosis. So, it’s worth talking to your doctor about if nothing else is turning anything up. One thing you might try is taking all your pillows away for a few hours and lying completely flat. Does your headache improve at all even if it doesn’t go away? When you change from lying completely flat (one flat pillow or less) to standing do you notice a spike/change in headache?

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    • By JMB94

      If I’m sat or lying in one position without moving it feels like all the muscles in my head/neck/face becomes irritated and start contracting uncontrollably, it feels uncomfortable which is why I’m often quite restless. I even get involuntary movements which is very puzzling. When I move from said position, all of the previous symptoms stop, but I feel somewhat dizzy like I have vertigo.

      That’s interesting, I think the next time I visit my doctor I may mention the possibility of having a spinal tap performed.

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  • By JR

    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!!!

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  • By GardensatNight

    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.

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  • By dtrefz

    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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  • By JMB94

    Hi all,

    Would just like to update you all. 8 months on and I’m still suffering unfortunately however I bring some hope. I went to see a neurologist about a month ago who diagnosed me with chronic migraines, and decided prescribe me an anti-seizure medication called Topiramate AKA Topamax.

    Now, I have done a lot of research into this type of drug and I’ve read very mixed results with some describing it as a miracle drug, others saying they couldn’t bare being on it with completely intolerable side effects. So far I’ve been on them for 4 weeks gradually increasing my dose from 25mg up to 100mg.

    I have to say, I have seen some improvement, it actually seems to be making a dent. My headaches have been considerably less severe, but I’m still blinded daylight (photophobia) and aura 24/7, so it doesn’t seem to be having any effect there yet.

    It feels like the migraine is still very much alive and kicking but has been somewhat numbed by the Topriamate. Has anyone else tried this medication? What’s your experiences?

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  • By Marilena

    Hello from Romania. I wanted to say that I have the same problem as you., but for more than one year. I went to 10 doctors and they are confused. I had some positive results with Elavil (amitriptyline), maybe you should talk to your doctor about it. It is an antidepressant.. who I found is blocking the pain receptors. I read a study about Tension headache in British Medical Journal and it seems it is working. Now I am using it the third time. First time when I used it, the headache was almost gone, then, after I stopped it the headaches reaperead. Now I am using it the third time and I had to increase the dose from 25 mg to 50. Hope it will help you!

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  • By Nomadsoul

    Hey,

    So I just got diagnosed with the same thing. At first my doc thought it was Trigeminal Neuralgia but my Neuro is sure it’s chronic migraine. I’ve been in constant level 8 pain for about 5 solid months now and it hasn’t stopped. The summer heat wave was extemely difficult to deal with but being on Topiramate (up to 100mg 3x a day) has made it manageable although it’s not enough. I’m finding that double strength CBD has been a godsend (little bottles of 500mg) as it works amazingly on neuropathic pain and now i’m being put on Amitriptiline as well which i’m not happy about. I’m so sick of side effects and i’m having a really hard time with it all. I work 12 hr days in film in an office so this is very hard on me. Being on the Topiramate has been great because I find I don’t have the Photophobia that comes with the migraines i’ve had for over 12 years now. I’m still in shock as i’ve never heard of what I call the “Everlasting Migraine” before like this. It’s so nice to know that someone else has this because I have never heard of this before, not that I wish this upon ANYONE. How are you doing so far>?

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  • By shirinimani1234

    Hey
    I’m a 17 year old girl. Normally healthy. I have a bowel disorder. For the past 5 months, early May I’ve had a headache. Sometime’s they are so painful and piercing. I feel sick sometimes from my headaches or just miserable. I feel it around my eyes, back of the head or just anywhere on the head you can think of. My doctor told me to take Tylenol and Advil or naproxen and it barely works. I take too many pills that a teenager should be for a headache. He thought it was a stress headache or tension. Now he’s trying to refer to me to a head specialist, whenever that will be. It’s really hard to concentrate sometimes or work even. Anyone know what I can do in the mean time so I’m not in so much pain?

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