Migraines Suck

On By WendyIn Chronic Illness, Invisable Illness, Migraines

Warning: this post may contain whining, feeling sorry for myself, and just plain complaining, but most of it is simply the way things are right now….it sucks, I accept that, but no I don’t like it and I wish it were different.

The last two weeks I have experienced some of the worst symptoms I can recall in many years. I woke up one day a couple of weeks ago now, feeling pain creeping up the left side of my head, it felt like my brain was hurting, inside my skull, my brain was being squeezed. It started on the left side and crept up over my head until it covered my whole brain, I could not help but cry out. I woke Stuart and he could only hold me. The intense feeling of motion, the pressure in my skull, the extreme nausea…it was horrible. Finally it eased to the point that I was able to simply pass out. Then it came back! This happened three more times. I decided sleep was not going to help, so I got up. It continued to happen throughout the day, no matter how much medication I took. Nothing worked. That was the beginning of my walk deeper into hell.

I’ve barely been out of the dark, the light sensitivity has been more intense than I’ve ever experienced it. Often I have not been able to get out of the dark at all. For days on end I couldn’t look at my phone or computer. I’ve been having the feeling of intense movement all day, with visual vertigo on and off. My vision will tilt, double, and is constantly blurry. For 2 solid days I could not focus enough to see much of anything, I just sat in my chair curled up in a ball, with sun glasses on, a towel on my head to further help block out light, an ice pack on top of that, staring at the TV watching shows that I’d seen over and over, just so I knew what was going on, since I couldn’t really focus enough to read the captions and often couldn’t even see what was going on at all. It’s bad enough to be in severe pain and dizzy, but to be forced to have nothing to distract you from that is torture. I tried to meditate, I tried to make up stories in my head, I tried to think of nice places, nothing worked. I was trapped sitting in a chair with my pain, confusion, and vertigo with nothing to help relieve it. I knew at that moment, if I had to live like this forever, I wanted to die.

I continue to fight this. My baseline headache never gets below a 5 now (I have daily headache all the time that normally hovers around a 3 or a 4). Every day the pain gets to at least an 8 for a few hours, and will spike to a 10 on and off. I continue to have all the other symptoms, sometimes they are worse than others, but they are always there. The nasal spray (Zomig) she gave me to try did not work. It’s kind of obvious that triptans have stopped working for some reason. I believe my head has gone crazy because it has gotten no relief. Normally I do get some relief from triptans, so the nerves have some time to reset, a little at least. (my 10 precious days a month when I can take meds gave me a few hours) Now there has been no relief so the nerves are constantly firing and just going crazy. My neurological and vestibular system are on over drive, what is triggering me this much, I have no idea, all I know is that my head is a mess, and I’m miserable.

Now my doctor is out of the country until June 12th, and she has jury duty the first week of July, so she had to reschedule my appointment to July 26th. I admit when I heard this I had a complete break down. I sobbed and sobbed, which of course caused more pain…ugh. But them I thought, I’ve lived with this for so long, a couple more months will not kill me, and I can go to the ER if I absolutely have to. I must admit though, I’m afraid to go to the ER, they treat migraine patients like drug seekers or fakers, the bright lights and noise there is torture, the stress of waiting hours….it makes me worse before they make it better. It’s so scary.

The good news is, her office did get the sphenopaltine ganglion block approved, so I will be getting that when I see her. It’s very interesting, she will actually be teaching me how to do it so I can do it at home. They are also working to get the Migranal approved, it is the Dihydroergotamine (DHE) in nasal spray. I have DHE injectables at home. I haven’t used it because you can’t use it in the same day that you use a triptan, and I had gone over the amount of days I can take meds for the month. When I’ve had intractable migraines in the past, not with the extreme symptoms I’ve been having lately, my previous doctor prescribed a DHE protocol of having 3 shots a day for 3 days to try to knock it out. We are going to start that today. Hopefully I’ll get some relief.

This has taken me two days to write and I’m sure it doesn’t read quite right because my brain is mush, and I know there are things I’ve left out, but I really tried. I even put in a couple of links. Woot!



20 thoughts on “Migraines Suck”

  1. Having to ‘like’ this post sucks too. Damn, Lady! I just ache for you! So sorry you are in such pain. I know this sounds like a broken record but do whatever you need to get through this! This increased flare of your migraines WILL end! It will, just hang on. Get that blocker, wonderful news! The post read just fine. So glad you checked in. If I could carry your pain for even one day, I’d do it so you’d get a little peace. So sorry, Wen. 💜

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  2. Christina

    Oh Wendy, my heart is breaking for you. This is so horrible and I feel useless because I know there’s nothing I can do to help ease your suffering. I’m so sorry that this is happening to you, friend. I hope a miracle comes your way soon. I want this torture to stop for you.

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  3. Rita McGregor

    That sounds absolutely horrible! I know when I am having a really bad time of it and can only watch something for distraction I watch shows I don’t have to focus on, too! Things I have seen before or a simple series where I already know all the characters and they don’t have anything fast moving or complicated or something like unusual houses or decorating shows. You really do need the distraction so it must have been awful not to even have that! I hope they can sort something out for you soon. Emergency rooms are the pits even without a migraine.

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      1. I’ve had 3 DHE shots so far. I did get out for a while today but totally over did it now I’m paying in pain.
        You are such a dear.
        Feeling my hugs. Love to you my dear

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  4. Mark Kent

    i get migraines very badly .nothing helps .nausea few times Vomiting BUT when i have Vomited
    PAIN INSTANTLY GOES .i, have long list health issues ..me. Anxiety ..ibs. i take part in a lot
    lot research
    my blog.http;//mark-kent.webs.com

    people never see the every day effects there views/judgements are very Snotty Nosed

    mark

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    1. Mark, I’m so sorry you have to deal with migraines too, on top of everything else.
      I get very nauseous with my migraines, but I don’t vomit, I know a lot who do.
      I have a few other things going on too, I think most of us migraine people have something. Some more than others. I read some of your blog, you have more than your fair share.
      Best to you.
      Wendy

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  6. Going into hospital with a migraine is hideous, those lights and the stuffiness is practically intolerable, so I can see why you’d want to avoid it. That and how invisible things like this can be easily fobbed off as you say with seeming like a drug seeker or faker.

    I’m so sorry you’re having such a rough time, it sounds like a pretty intense flare. It made me wonder about cluster headaches, rather than migraine. I had those for the first time last year and it lasted for weeks, and it was an utter nightmare. I get regular migraines but those were, well, different.. any chance it could be that do you think? Apparently for clusters they tend to treat with oxygen therapy which is why I ask, just incase that’s something to consider. I didn’t get anything, just had to eat through packets of Sumatriptan.

    I’m glad the sphenopaltine ganglion block has ben approved, but you’ve got a long wait for to see your doctor, is there anyone else you could try in the meantime perhaps? Really do hope the DHE spray can help, even if just a little, as it sounds like you’ve been in hell. Sending lots of hugs your way, Wendy  ♥
    Caz xxxx

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    1. I can always hear how much you care and understand in your comments Caz, you are such a dear.

      I do get clusters, I actually had a bad one yesterday! My clusters hit hard, sudden, out of the blue, and attack my eye and temple. My eye waters and I can’t keep still because of the pain. It is definitely different than a migraine. I’m lucky that they don’t last as long as a migraine (normally between 5 and 30 mins, but when the pain is at that level 30 mins is an eternity), but they do come in clusters, so if I had one yesterday, I’ll probably have one today. It is summer…June to be exact…so it’s cluster time for me. In NC I had oxygen at home, so it was wonderful. I was having clusters a few days the first week of every month, but for the past few months I haven’t been. Thank heavens! From all the research I’ve done and from what my doctor tells me Sumatriptan (or any triptan) won’t help a cluster, if you are in a cluster flare and a migraine flare at the same time it may be helping the migraines, but it’s not treating the cluster. High levels of Oxygen can help, and DHE shots can help, that’s the only 2 things I’ve used and I have only found the oxygen to really help well, it can knock it out FAST! I hope you never have to experience another cluster.

      When this first hit I thought it was an Intracranial Hypertension headache, but it didn’t get better when I got up, or when I increased my medication. The pressure feeling on my brain felt a lot like it, but not quite. When I have that it feels like my brain is literally being squeezed, and it kind of is, but when you sit up the fluid drains down and the pressure is relieved, this didn’t happen, and the the pain wasn’t quite right.
      I have way too many kinds of headaches!!

      Can’t say that the DHE shots this weekend really helped. I had a little respite on Saturday for a few hours, but I’m pretty sick now.
      I’ll try and post about it. A little gratitude and maybe a bit more whining.

      love and hugs xo

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  7. Oh so so sorry you are in such pain. I hope something happens soon to give you some relief.
    There was an ER in one of the cities where I lived in Canada to that had a “dark quiet room” with comfortable chairs for folks with migraines, children with certain health issues, people getting certain infusions etc. I often had to wait a long time to be treated, but at least I was off in a room where there was little sound and almost no light. What a difference that made. I don’t suppose there is an ER in your city with that feature? I think it should be mandatory.
    Sending healing thoughts, gentle hugs.

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    1. Oh wow, I’ve never seen an ER with that feature, I can’t imagine. I’m lucky in a way, I can take off my CIs and have quiet, the light would be an issue but I could shelter myself from it somewhat, the absolute worst is the smells! Scents are my number one trigger, so waiting rooms can be quite challenging even on good days.
      I’m still envious on your waiting room

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      1. And, Canada has a lot of “no scents” spaces, too. Federal, provincial offices, libraries, doctor’s offices, and hospitals.
        For some reason, Canada gets cutting edge of things like that.
        Scent is one of my headache triggers, and certain ones will trigger a migraine. Like whatever Whole Foods is now cleaning their bathroom with. I literally got a migraine in there! Whole Foods, of all places! Ah, Amazonia, go figure.

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  8. I’m so sorry to hear about your pain and symptoms! You poor thing. Ugh migraines. They’re the worst.

    Do you think the flare-up has anything to do with Emgality? Just a thought I had.

    hugs I hope you feel better soon.

    -Kelly

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    1. Kelly, I too had that thought, but according to my doctor, no it’s not the cause, especially since it didn’t start the fist month. But boy this sure is all happening at once huh? Thank you for caring. hugs to you. xo

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