Me and My Migraine

On By WendyIn Chronic Illness, Headaches, Migraines
TX360 nasal applicator for SPG blocks for headache disorders

I’m happy to say I was able to get into see my doctor on the 18th, I’m sorry to say I still have this migraine. I’m happy to say I have had some relief, I’m sorry to say it has been very short lived.

When I saw my doctor we started the SPG ( Sphenopalatine Ganglion) blocks. You can see the device in the photo above. When they first started doing these blocks the procedure was much more invasive, now I can do it by myself. I’ll show you:

First you get the anesthetic in the syringe
Then you put the device together and place it in your nose (note the long tube that is shown in the main photo is up in the device at this point, not up in my nose)
Fist you just let the plunger fall, that releases the little tubing, then you press the plunger end and that releases the medication, and that’s it. Then you repeat it on the other side.

For the sake of time and because I’m feeling mighty lazy and hurting, here’s a link to an article about how SPG blocks are supposed to work: Sphenopalatine Ganglion Blocks in Headache Disorders

To break this migraine flare that has been going on since April 20th, I am to do these blocks every day for 10 to 14 days. Today is day 9, I’ve had a few hours of relief, but that’s all. I feel that as soon as the anesthetic wears off the pain returns. Sometimes it is within a few minutes, sometimes I get an hour or two, but never longer than that. I had hoped that the time would build up and up as the treatment progressed, I’m losing that hope now. There have been times that the pain has been so severe that I have considered going back to the Emergency Department, but why? I know it would do no good.

This has become very hard to talk about. People ask me how I’m doing and I find myself lying. I don’t want to tell anyone that I’m still in so much pain. I don’t want to keep avoiding social activities. I’ve forced myself to do things, but I did have to excuse myself because I was getting too sick. I’m embarrassed. I know people do not understand. I know they are tired of hearing it. I’m tired of living it. I’m tired of saying it. I’m tired of hearing people say they are sorry. How long can they continue to feel bad for me. I don’t want pity. I know they can’t understand. If this is my new normal I will have to learn to live with it. I have to learn to push through it. To be able to say, “I’m fine” when people ask, and somehow mean it. I have to be able to put on the face and be okay with that. No one wants to be around someone who is consumed by pain all the time. How do I answer these questions? No I’m not better, but I’m okay…..some days, some days I’m not okay, but that’s okay too.

I can hear it….. It’s just a headache. Is she ever going to get better? Can’t she just take something? Why doesn’t she get a better doctor? She exaggerates. It can’t hurt THAT much. She’s ALWAYS sick. I’d do this or that if I were her….massage, integrative medicine, acupuncture, chiropractic, this or that supplement, this or that diet, this or that exercise, a certain pillow, essential oils, TMJ treatments….believe me I’ve tried so much my head spins from it all and I’m still considering more!!

Can you understand why I would lie about how I’m feeling? Why it’s getting so hard to talk about it? I am just so tired.

20 thoughts on “Me and My Migraine”

  1. oh Wendy………i want to do something for you, make it better, make people understand. i have no idea the hell you are going through…….but i live with daily headaches and people don’t get it, i guess they can’t unless they live inside our bodies. i am cheering for you, praying for you……..sending virtual gentle hugs. i hear your pain.

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    1. Oh my dear, you live with daily headaches and more, you understand. We may not have the same things, but we have similar challenges. We hear each other. Thank you for caring and cheering me on. Never forget, I’m in your corner too. xoxo

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    1. I want there to be words and actions that make you feel better and not be tired of all of it all. I want all of us to not be tired of all of it. So many wonderful people we’ve met and we’re all dealing with some sort of crap, we don’t need this extra stuff on top of everything we deal with on a daily basis.

      What I want is empathy taught to kids at a young age and reinforced as they get older so that when they meet people with an illness or disability, they don’t go down that road you described in the last couple of paragraphs. And something for adults too! Never too old to change while we can.

      We also need campaigns like they did with mental health and MADD where the message keeps being put out there about treating people better. Because you’re right. We don’t want pity.

      I feel a lot of times that we are ignored or cheeks are turned the other way, it is because people look at us and think it could happen to them if they don’t acknowledge it, if they look away, whatever scary disease will bypass them and affect someone else. Because that stuff always happens to other people.

      Well, didn’t know that would come out of me tonight. ¯_(ツ)_/¯

      Might have just made a blog post for myself. lol

      In the meantime, all we have are words to convey how we feel so, here goes. While I don’t know how you or others feel physically, mentally and emotionally, I so get the being tired of it all. Think we all do. So, will send my love to you and Stuart and here’s to better days and to sometimes feeling okay, or not, which is okay too.

      😘😘😘

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  3. Alyssa

    I am so sorry Wendy! Being in status migrainosus is absolutely miserable and something that no one can understand completely unless they experience it. I know how hard it is to be in that pain and know that the ER cannot do anything that helps. It is so much more than “just a headache,” it’s hell. I really hope things improve soon!

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  4. Oh, Wendy. So much of this, I can identify with, whether it be due to seeing my mum suffer from, often daily, migraines her whole life or due to my own experience of ‘never getting better’.
    Although I can’t say that I know how your feeling, I know you are in pain and that you are tired. I know from my mum, the struggle to get help with migraine and to find something that actually helps.
    I understand the feeling of needing to lie to other people about feeling better. It’s difficult for others to know what to say when there are some things that people do not get better from. I always feel like I’m letting people down when I tell them I am still dizzy, I am still half deaf, I am still dealing with ear pressure, I still can’t be around lots of noise, I still have tinnitus, etc etc. How can it be that I have accepted these things, but it is so difficult for others to accept them? I know people only ask because they care… But, there’s almost a feeling of guilt to admitting that things aren’t good.

    Wendy, you have many people reading your words and cheering you on. You will also have many people reading your words and taking comfort in the fact they are not alone in whatever health or life issues they may be dealing with.
    It is okay to not be okay.
    Love from Spain
    Your friend,
    Carly

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  5. I’m so sorry to read about your pain. I get migraines and it drives me crazy when people say “oh it’s just a headache”. Ugh!!! No, it is a whole body of misadventures and misery. I loathe the Excedrin migraine commercials. A caffeine headache isn’t even close!!

    I had a migraine a couple of weeks ago that lasted a day and it was bad. As in I just laid in my bed thinking “this is it, this is how I die”. Aside from my dramatics, I understand the pain and nausea. I wish I could take away your pain. You’re a brave and strong woman. lots of gentle hugs

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    1. It went on FB. I shared it there. I don’t know why it ways reblogged? I hope my sister reads this. Too many cooks in the kitchen, you know to do this, do that… like she hasn’t tried it all? Like you haven’t??? Bah! You have!!!

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  9. I’m glad you’ve seen the doc, but bloody hell, Wendy, you have it so incredibly rough with migraines. I’m glad you’ve started the SPG, and I think you’ve done a great job with the photos because I didn’t realise how this was administered. It made me chuckle that you clarified where the long tube was from the first photo – I’d be impressed if all of that fitted up your nose!
    So this really is just short term relief by the sound of it. Rather than, say getting to day 14 and benefits accruing so you’ll notice more difference then. I’m so sorry it’s not been more effective.

    Please hang in there. I wish there was something I could say or suggest.. you’ve tried a lot of things, but there are always other options, even if it takes a while to figure out what they are. It’s hard to talk about migraines because way too many specialists are idiots or ignorant asses; you don’t know what a person is feeling or just how damn bad something is to deal with unless you’ve experienced it yourself.
    Sending lots of hugs your way ♥
    Caz xxxx

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