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Non-stop 24/7 "migraine" headache for 4 years. New development

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MrKrabs
MrKrabs

Hello my name is Dylan. I'm 18, and have been suffering from a constant "migraine like cluster-headache" for the last 4 years. It all started when I got sick with the H1N1. I was assumed to have the H1N1 based on my symptoms, although a test was never done, and I was prescribed tamiflu. I went through months of constant fevers and colds as well as bronchitis. Throughout it all I had bad headaches, but nothing I'd remark as abnormal given my health at the time, they were just "bad headaches".

3 months into the H1N1 flu I went to watch the movie Avatar in 3D with my family. At this time I still had a bad daily headache but it was manageable with ibuprofein/tylenol. When I got home from the movie my head was absolutely killing me and so I went to my room, applied ice, took tylenol nothing helped. The pain kept climbing and I ended up screaming in pain into my pillow and was in agony. I'm not one to show pain, but it was like nothing I had ever experienced. I'm not sure if it was right after that, or in the coming month, but at some point the headache was always there and always at a high pain level. It NEVER went away, and never has once gone away in the past 4 years. The pain back then was all around my head, everywhere, I couldnt pinpoint where it was when asked because it simply hurt everywhere.

Fast forward to 3-5 months ago, I started noticing that the pain had centralized around my temples. The level of pain has not gone down, and I'm not even to sure when this change occured, but I was now sure that most of the pain was emenating from my temples.

Fast Forward to a few weeks ago. I have now noticed that the pain, while being in my temples, also seems to reside along my upper cheek bones. And having these bones massaged seems to aleviate the pain for a short while. I have also noticed I clench my teeth a lot. I have started wearing a sleepright dental guard at night, and have found that I wake up in less pain, though this could be placebo. I say this because my pain usually starts off low in the morning and rises as the day progresses.

So what I'm asking your advice on: Is this new develpmont of the pain residing in my upper cheek bones/temples possibly mean there is a solution to curing my migraines?

Now, I have never once thought this migraine would be curable, simply because it never felt that way. I have had a CT-scan, MRI, and X-rays a few years back, however they never found anything out of the ordinary. However now that much of my pain has moved into my upper cheek bones I wonder if there is a possibilty of it being something else thats causing these migraines.

My neuroligist check me for signs of TMJ a few months back when I mentioned about my temples, but found no signs of it. I also don't have clicking of my jaw or lock jaw, or much discomfot in my jaw to begin with. I still have my wisdom teeth in, and my parents are scheduling to have them removed, however I don't believe this is the cause either through internet research (gums not inflamed/hurting, no signs of wisdom teeth emerging, and the type of pain.) I looked into Trigeminal Neurolagia, but the type of pain and attacks didnt match.

Symptoms of this "migraine like cluster headache":

- I get a migraine aura when the pain spikes. Light sensitivity increases, sounds become distant and my motor function becomes impaired. I also seem to have "blue field entoptic phenomenon", as I see stars in the sky all the time, this started a year or so ago, but is probably unrelated.

- Pain starts off low in the morning (generally), and rises as the day progresses.

- Pain increases a lot from Motion Sickness and loud noise. If left untreated will turn into a full blown migraine attack.

- Alchohal/caffeine/cannabis have been used for pain relief. I used to rely solely on cannabis, however, it started creating rebound headaches so I have moved to rely on caffeine and alchohal.

- Impaired memory. While the use of cannabis may also have affected my memory, I feel a lot of the loss is on account of the daily pain I put up with.

Anyway, this is just the tip of the iceberg, there are many things not covered (hard to believe with that writeup, I know lol). This post is a novel as it is, so I think I'll cut it off there razz. The line in bold is the question, does anybody have any ideas as to what this new develpmont could mean? Thank you for your time, I apoligize for the length of the writeup, and understand it could be hard on some people's heads.

Attached is a little diagram I annotated with the new pain areas I'm referring to. Blue= specific point, red= ecompassing pain.

2 likes, 20 replies

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  • MrKrabs
    MrKrabs

    Posted

    One thing I've missed, this migraine has seriously reduced my quality of life, and has affected my schooling in such a way that I'll be 21 before I graduate, and I have always been a straight A student. The constant pain, while not comparable to others migraine attacks, is still quite significant. Because the pain never goes away, I have never gotten reprieve from it, and still struggle to cope with it as a part of my life. I have botox injected into my head every 3 months to reduce my daily migraine pain. When I delay the botox injections the pain spikes tremendously and the number of migraine attacks I have increases ten fold. So botox has been an effective treatment for me so far, but it has never left me pain free.
    • A303101
      A303101 MrKrabs

      Posted

       I think it'd pain is mi grating and mouth guard would be a help I'm sure... i think i may have to try botox..

        have u told ur doc. U smoke weed i never have.. and maybe u need to eat we'd not smoke it that may help....

       finding a typ of massage oil will help. I like pro-massage.   Its warming.. bio freeze and pepperment don't work for me...

    • christophe90489
      christophe90489 MrKrabs

      Posted

      Hi Please see my post to polly62 which I talk of another treatment 

      Regards

      Chris

    • Alex482
      Alex482 MrKrabs

      Posted

      Hi,

      I have the same thing you're going through, expect I got it from two bad concussions. You're the first person I have come across who knows firsthand what it's like to deal with the constant headache. I got my first concussion four years ago and since that day I had the 24/7 headache. I just recovered from another concussion I got in September. Since the second concussion, I have been struggling with my memory and differentiating between what's real and what's not. I have forgotten my entire senior year of high school and some parts of college. Some days I feel like I am going crazy. I lost some many memories that I am scared for my future.

      I truly hope you're doing alright. It is so nice to know that someone else understands how I feel, athough I am really sorry that you are going through this. If possible, I would really enjoy talking to you. Good luck with everything.

  • bbmoe
    bbmoe MrKrabs

    Posted

    Hi, MrKrabs.  My son developed non-stop headaches when he was 13-1/2.  We thought they were migraines, and they did have migraine characteristics.  We also have a family history of migranes (I have a letter dated 1862 from my very young great-grandfather saying that he was still missing school because of headaches).  Differing from your experience, however, he occasionally had a respite of a few weeks, but the episodes were so long that we ended up home-schooling him for some time.  

    Please look into a nerve block.  This can be administered by an anaesthesiologist.  When you've had chronic pain like this, it takes on a life of its own, and won't resolve itself, even when the "cause" has long gone.  This is true of any kind of chronic pain, not just headaches.  A nerve block for your headache will be administered by injection in a nerve that runs from the spine over the top of your head and terminates over your eye socket, unless the neurologist (pain doc) determines that another nerve would be a better target.  The injection consists of novacaine or some other fast acting med, and cortisone.  This is an extremely safe injection: it is administered into the nerve sheath and stays there.  It doesn't migrate, and it isn't a systemic medication.  The novacaine is fast-acting, the cortisone (anti-inflammatory) is long-acting and these injections are not needed frequently- my son only needed three at longer intervals and he has been completely free of headache since the last.  He is now 24, and his last injection was when he was 18.  They do not permanently dull the nerve, and the injection at the site (back of the neck) does not impede movement or function, although some swelling at the site may occur temporarily.

    Bear in mind: your headache may have a hormonal component.  Nearly all boys who have headaches in their teen years outgrow them by the time they begin to shave.  The problem with chronic headaches, though, is as I said, they've now created a pain pathway that needs to be completely disrupted.

    My experience is in the U.S., and our healthcare system is different than yours, so I don't know if you'll be able to get a pain doc and so on.  In the mean time, I am praying for you and please know that I understand what you're going through. You sound like a very resilient young man, and it's a wonder that you are able to write so dispassionately about your suffering.  Please extend my warm regards to your parents as well.  They are very worried and distressed, I'm sure.

    • MrKrabs
      MrKrabs bbmoe

      Posted

      Thank you bbmoe for the informative post and the kind words. I am happy to hear that your son has had success in beating them, it gives me more hope. I will look into the nerve block, I have heard about it before, but I had no idea the results could be so significant. Most sources say it only lasts 3 months, not unlike my Botox injections, but if its worked that well for him it may be an avenue worth taking. More than likely the treatment won't be covered, thanks to our amazing free healthcare, but its still worth trying. One crazy thing that's helped lately for temporary pain relief is dimenhydrenate, or more recognizable as Dramamine/travel tabs. I can't recommend it though, as results may vary, just an interesting finding I've stumbled upon, I'll look into the nerve block. Do you know which kind of block he had done, I know of ooccipital and trigeminal? Thank you very much again for your posting.
    • bbmoe
      bbmoe MrKrabs

      Posted

      I had to look it up, but it was definitely occipital.  Botox was also suggested as an alternative.  As for it's persisitence, the effects of the block are temporary but *cumulative.*  The point is, that it may be 6 weeks or less before you need the next one, then 2 months, then 4, etc.  We were discouraged at first because the doc said that he would feel relief w/in 15 minutes if it was going to work at all.  He felt no relief until the next morning, so we left the office thinking that it was another failed treatment.  So don't be discouraged!  

      The side effects are minimal because it isn't a systemic shot.  The trigeminal block looks a bit more daunting, as the needle has to go through the mouth, but if you've had your wisdom teeth out, this will be old hat.  By the way, were you put completely under for that extraction?  What effect did the procedure have on your headaches, if any?

      In any case, it's up to the pain doc to figure out if you need an occipital or a trigeminal, but considering your symptoms, I wonder which it is (could be both!)

      By the way, tomorrow is the feast day of St. Teresa of Avila, a great saint (Doctor of the Church!) who is also the patron of headache suffers.  We will both be praying for you~  God bless.

    • bbmoe
      bbmoe

      Posted

      Sorry- St. Teresa's day is 10/15.
  • samantha78199
    samantha78199 MrKrabs

    Posted

    Dear MrKrabs, 

    My name is Samantha, I'm turning 15 soon, and unfortunately I also experience similar problems.  Unlike you though, I have had 24/7 headaches ALL MY LIFE and I have never had H1N1.  In my life, that same dizziness, nausea, lightheadedness, and migraines, have always been there. Thishas affected me a lot.   Some mornings I cannot get to school because I can't get out of bed without falling to the ground again.  My headaches can become more intense by loud noises or moving too quickly, which hasn't helped me so far in high school.  I also have to go to the Nurses office a lot for icepacks, (which seem to help my headaches).  I have officially been excused from all school pep assemblies because I pass out when there are many SEPARATE noises at the same time.  This is due to my ADHD because I attempt to focus on every voice, causing an "overload" and I pass out.  Another way I pass out is when I get bloody noses, (I get a lot of those too).  

    Impaired memory:  This is another problem I have and it causes me to forget to eat, and I pass out again.

    I face many of the same problems you do, having many of the same symptoms you described with a few "BONUSES" included also.  The reason I wrote this is because I wanted to let you know that you are not alone.  

    *Fortunate news: As I am dragged through the twists and turns of this headache in my life, I get more and more used to it.  Now, it's just there, a "companion" that gives me experiences that help me learn things I never would have without it.  I was afraid of it, but now I embrace it.

    *Unfotunate news:  I will most likely live the rest of my life like this.  But, I hope for you, it doesn't.

  • bob33118
    bob33118 MrKrabs

    Posted

    Hey MrKrabs, I doubt you still check this forum, but I was wondering if you have made any progress. Ever since I suffered a concussion 4 years ago (at least I think it started here) I have had non-stop headaches. It too is concentrated around the temples, and too say it has decreased the quality of life has been an understatement. I can honestly say that I 100% understand what you are going through sad. Anyways,  if you have made any progress or found coping mechanisms please let me know. These headaches are a real b****, especially because NOBODY understands.

    -Josh

    • pauline40041
      pauline40041 bob33118

      Posted

      Hi Bob,

      I have just found this site and have been reading everyones notes.

      I will keep this as short as I can.

      I started with headaches 9 years ago just out of the blue. I had all the xrays ct's mri scans possible and they found nothing, except, that I had a fushion in one of my neck vertebrae's.  Over the years I have had alsorts of medication.  I have now got my migraines under control. They are trigered by my neck, I cannot lift anything heavy and if I sleep in a bad position i get the headache's.  Mine start in the early hours of the morning and i only have them one week of the month. I now take Almotriptan, 2 at night and tramadol if needed on top.  after taking my tablets I know my headache will go in about an hour. It has taken nearly nine years to get to this point from every day 24/7, i can live my life to the full and not worry about.

      Hope this might help other people

    • bob33118
      bob33118 pauline40041

      Posted

      Hey Pauline.. I am glad to hear that you got yours under control, it gives me a little bit of hope. I am only 15, do you think your cause could still be possible? Also, who did you see that decided that you needed a spinal fusion? Thanks, Josh
    • pauline40041
      pauline40041 bob33118

      Posted

      Hi Josh,

      Forgive me if I am being a bit thick, but I don't understand what you mean when you said "is my cause still possible".  Also, a fusion is when two vertebraes are stuck together, mine have been like this since I was born.  Over the years they have rubbed together and are now grating because they are warn out.  So if I have any pressure against my spine I get my headaches, so I have to be careful.  I hope this has helped you

    • bob33118
      bob33118 pauline40041

      Posted

      No problem, I assumed that since you started having headaches 9 years ago, you must be older than me, and I didn't know if your whole vertabrae/fusion problem could still be possible for me being relatively young.. I just don't know alot about it. lol
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