My Story – A trip to the Hospital – Migraine Awareness Month

On By WendyIn Chronic Illness, Headaches, Migraines

We all have our story, this weekend I added to mine.

I’d like to give you a little bit of background on my headache story. Two months before I turned eleven I had my first period, and my first migraine. It was labled a “menstrual headache” and I was told most girls got them. On my 11th birthday we were going to the lake to go swimming and I was hit with a nagging headache, this headache never went away. I was labeled with allergies and sinus headaches. These labels stuck for many, many years. Now my migraines have progressed to the chronic level, I have a migraine over 20 days a month, and it seems they are becoming intractable. The medications I used to use are not longer working, and I’ve tried many alternative treatments. My daily headache is never below a 3. I also have cluster headaches that normally show themselves in the Spring and Fall, but sometimes more often. I haven’t found any treatments for the daily or cluster headaches. Most days I haven’t given up hope, but I must admit that some days I feel like I can’t go on. That is my history in a nutshell, now for the story of the weekend.

Today is the 54th day of a running migraine. There has been no relief. The pain has been variable anywhere from a 6 to a 10+ (there have been times the pain has been greater than I could imagine).. No medication has helped to relive my symptoms which include much more than pain. When most people think of a migraine they only think of the pain, but it is so much more than that, I experience numbness on the right side of my face, sometimes traveling down my arm, my face sometimes droops, my vision blurs and will double and dim to the point I can’t see, I have extreme light sensitivity, and sensitivity to smells and sounds,, I experience dizziness and vertigo that varies in intensity, and extreme nausea….these are just a sample of the added symptoms that I can experience during at migraine, others can experience different symptoms. Migraines are so much more than a headache they can even occur without any pain at all.

At present my neurologist is out the the country. I messaged her office last week and told them my situation and they suggested I go the the Emergency Department to get a “Migraine Cocktail” and some hydration. I voiced my concern about the torture that an emergency department can put me through, the bright lights, the smells, the noise, the wait….but I was assured if I called and reserved a time to come in I wouldn’t have to wait long. We did call and set up a time of 4:30pm on Thursday, I arrived 10 minutes early and was triaged right away, then I waited SIX hours before I was seen. I realize I was low on the triage list, and they had a number of emergencies but sitting there in extreme pain was absolute torture. I almost went home. I had a seizure in the waiting room and no one paid any attention. I do have to put in there that we were in a quiet waiting room with dim lights because of my light sensitivity, but after they were informed, a tech came and took my vitals, but no one else came. I decided it was time to leave. Stuart went to tell them we were leaving and at that time they realized how long we had been waiting, and they got me to the top of the list.

After I was taken to a room I was surrounded by extremely nice nurses and doctors immediately. They made a plan and had medication going within just less than an hour. The doctor told me they had to start on the first cocktail, but he didn’t think it would work on me, because he had a feeling I was a tough case. He said after that they would do a second cocktail and if that didn’t work they would admit me and there were all kinds of things they could do then. Neither of the first two cocktails worked, although the second one did help me sleep. I was admitted, after many hours of waiting for a room

I was started on a new cocktail that was very much like one that I had in the ED, but they wanted to add Imitrex (sumatriptan), I refused this medication because it causes me to have tachycardia. I soon saw the neurologist and he put me on a cocktail of DHE, Toradol, Depakote, and Magnesium every 8 hours for 24 hours. He then told me that if it did not work he could do no more and I would be sent home to suffer there instead of suffering in the hospital.

The cocktail knocked it down to a moderate level, until they stopped it. After they stopped it a new nurse came on duty who had a scent that triggered me. My migraine shot up and I was terribly sick. It did not come down, and I was sent home “to suffer”.

Today I woke up in intense pain that continued to build, within an hour it was so excruciating it was beyond what I could imagine a migraine could be. I was not sure if the pain would diminish. If it hadn’t I would not have been able to carry on. I had to admit my thoughts have gone there, but migraine can kill. All I can hear in my head is, “You can SUFFER at home”

My doctor is the only headache specialist in this area. According to the American Headache Society currently only 416 specialist are certified by the United Council for Neurologic Subspecialties (UCNS) to treat an estimated 36 million migraine sufferers over age 12 in the United States. I’m lucky to be able to see one, but when she is unavailable it is very difficult. She will be back in the office on the 12th, however she has jury duty the first week of July, I don’t have an appointment until July 26th. The doctor I saw in the hospital said he was going to talk to her office to see if he could get me an appointment earlier. I doubt that will happen.

There is a headache clinic at the Mayo Clinic in Phoenix. If my doctor can’t help me I’m considering going to the clinic for an evaluation It is 110 miles away. Does anyone have thoughts on this? I’ve heard some conflicting results from friends about their experiences with Mayo, I’d like to know if anyone has any thoughts.

This is Migraine Awareness month therefore, I’ll leave you with a few more facts about migraine.

  • Migraine is the 6th most disabling illness in the world
  • Migraine often runs in families.
  • Migraine is often misdiagnosed as tension or sinus headaches.
  • Migraine also affects children.
  • Pain does not have to be present during a migraine.
  • More than 4 million adults experience chronic migraine with over 15 migraines per month.

If you know someone with migraine, be gentle, try to understand, Sometimes it can change you. It can steal your life. It doesn’t mean they don’t want to spend time with you, often it means they can’t. They still love you. Love them.

28 thoughts on “My Story – A trip to the Hospital – Migraine Awareness Month”

  1. blindzanygirl

    Wendy, my friend, this makes heartbreaking reading. I do not suffer from migraine, but I understand the effect that perfume can have upon you. My heart broke for you when I read that. We are unable to get heloers in our home because none of the “Caring” companies will tell their staff not to wear perfume. If they tried to find a girl who woukd agree not to wear perfume, even by making us her first call, then putting her perfume on in her car upin leaving us. No girl woukd agree to it, and we are left without Carers. Mi cannot imagine the terruble pain of your migraines, and do realise thenother symptoms that go with it. My sister has migraines but nowhere near as bad as yours, but she too gets those horrible accompanying symptoms. Steangely, I myself become nauseated at smells, and often simply the smell of cooking can make me feel extremely nauseous. I do understand about the smell thing.

    How awful, We dy, that there are no drugs that work for you. I understand your not wanting to go on at times. I am so very sorry that you are going through all of this. I am sending yiu many gentle hugs and much love ❤️❤️❤️

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  3. Rita McGregor

    I feel so badly for you. My chronic pain is not even in your neighborhood.
    Growing up in Minnesota the Mayo Clinic in Rochester is the holy grail here for anything that can’t be easily dealt with or diagnosed. The girl I grew up next door to had a brain tumor that was causing her extreme pain, migraines, and dizziness. She was told it was inoperable because of placement and sent her to Mayo to see if they could do anything for her. They did a new laser treatment over many visits that gradually shrunk the tumor down as much as they could safely. She had no brain damage, but had dizzy spells for a few years. The tumor shrunk away the rest of the way and her dizziness gradually disappeared. Without May Clinic she would have died–painfully. So, I am a fan of Mayo Clinic. 🙂

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  4. I am so sorry you are having to deal with this. Pain takes away pleasure. Eats at the soul. Crushes the spirit. That you have survived shows the warrior princess in you.
    As to the Mayo. I don’t know anyone who has been there, but I do go to their website for information. Also, they now include complimentary and alternate/alternative therapies in their practices.
    The trip would be hell, I am sure, but you have descended into a Hades of pain and other symptoms.
    Sending you good thoughts for healing, and good thoughts to give you strength.
    Gentle hugs, dear one.

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  5. 54 days of migraine? Oh Wendy, my heart really does go out to you. That is relentless hell. I get migraines 3-4 days a week on average, but not 54 days without any respite. You’ve raised some really good points, especially how migraines aren’t just pain, there’s a lot more to them usually for most of us. You certainly get a lot to contend with with yours. Going to the emergency department with a migraine is no joke. When I’ve been because of problems with my stoma I’ve had a migraine at the same time on a few occasions and the noise and bright lights especially are absolute torture. It’s so frustrating your neurologist is out of the country. Though maybe she would have also said go to emergency, too. I can’t believe you have a seizure while you were waiting and nobody paid any attention. That’s so awful. I’m glad you had some nice doctors and nurses when you were eventually seen.

    I use Sumatriptan and find it generally quite effective; I’m sorry you can’t use it because of it causing tachycardia. It seems so crazy to get to the point of having several cocktails of drugs, finding nothing is enough and just being sent home. No oxygen therapy offered? Not that it would necessarily have done any good either. I just wish there was more that could be done when you’re so desperately in need of some relief from all of this. I’m in the UK so I can’t offer any thoughts on the Mayo clinic. 110 miles is a long ass trip but desperate times, desperate measures.. there’s a part of me that says it’s worth trying because otherwise you’ll never know. In the mean time I’ll keep my fingers crossed an earlier appointment is, by some miracle, possible with your doctor when she returns that doesn’t coincide with her jury duty because waiting until the end of July is just ridiculous. I wish I could do something to help.. Sending my very best wishes & lots of hugs your way  ♥

    Caz xxxx

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    1. Hi Caz, I’m sorry it has taken me so long to reply to your lovely comment. You always help me feel, not quite so alone, as I have really been feeling. I’ll try and address some of the things you said. About the seizure, in all fairness, we were in a waiting room that was off from everyone because it was darker so no one actually saw it, but when Stuart told a tech, it seemed that he couldn’t find anyone to actually come and do anything. I felt like it was like…oh she’s had one before so no worries.

      About triptans, even when they were working, I could only have them for 10 days a month, not just because of medication overuse headache, they can really mess up your heart if you take them too often. I would have taken them every day if I could have. 🙂
      No oxygen, that only works for clusters, and I’m just in a migraine flare. Thank gods, I can’t imagine having a cluster non stop for this long. I will have clusters day after day for about a week but each one last a few minutes, I cannot wrap my head around having that kind of pain for longer than that. That pain is much different than migraine pain. It is piercing, like an icepick driving behind my eye in in my temple, my eye waters and my nose runs, and sometimes my face droops and I get all flushed. I can’t stop moving from the pain and I’ve actually banged my head on the wall trying to stop it. It is SO different from my migraines. I know you know. But anyway, pure O2 works great for clusters, but does nothing for migraine.

      I got in to see my doctor on Tuesday!! I have things to talk about. I will post about it, hopefully today, knowing me I’ll start today and finish tomorrow. but I got started on the SPG Block, and I’ve had some relief, not a whole day, but a few hours! So I’ll be putting Mayo on hold for a while.
      Just knowing you wish you could help helps.
      always my best to you with many hugs.
      Wen xo

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  7. Goodness! That is awful, my heart goes out to you… Isn’t 11 very young to begin having migraines? I had mine begin at 16 when I had to work under bright strip lights and it worsened whilst working on a stand in an enclosed exhibition hall. I noticed part of the cocktail that worked contained magnesium. I’m recently bathing with Dead Sea salts which are calming and apparently very good for you.

    Sorry you go through this Wendy. I hope you are having a better day today (((hugs))) xox

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    2. Hello Faith! I finally got in to see my doctor and I’m doing a bit better, I’m having a few hours a day free now, it should be getting better and better with the SPG block treatment over the next 2 weeks. Yay!!
      From what I’ve been reading 11 isn’t really all that young, according the the Migraine Research Foundation nearly half of all migraine sufferers had their first attack before age 12. Wow. Mine started shortly after I started my period, which started 2 months before I turned 11. They got much worse the next year when my parents separated (they got back together, but that year was hell on our family)
      None of the cocktails on the hospital completely worked, darn it! They gave me magnesium pretty much the whole time I was in there. I do use magnesium as a soak, but I don’t soak near enough. I love doing it, but I hate cleaning the tub. haha

      Thank you for caring my friend. I miss your writing. I miss your little fur babies too. HUG xoxo

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      1. Hello Wendy, I’m not blogging regularly still and I apologise for not having replied sooner…I didn’t even know I had comments. Thank you 🙂 And thank you for your compliments too. I think about writing almost every day I just don’t have that confidence at the moment.

        I bought some magnesium salts and try rubbing them when just flakes into my hands and wrists or soak some in the sink and use with a cloth (because I can’t get out of the bath anymore; maybe, if I push it the council will fit me a special bath? The occupational therapists visited a few years back but I still have problems trying to not fall while showering and cannot get up with the hip as it is). After being in contact with the magnesium I get a little uplift in mood and feel happily sleepy! Did you get these side effects?

        How is your SPG block treatment going? I hope and pray you are feeling much better.

        Thank you for being a friend. Love and best wishes to you (and your darling family) xoxo

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  8. I just (TODAY) heard an incredible doctor on an on-line conference. He described and treats people with the kind of symptoms you’ve experienced. He doesn’t take new patients but said that there is a new organization that has a list of clinicians who are integrative/functional medicine specialists and I noticed there were several listed in Phoenix. They take a look at the whole picture. I was really impressed with what he said.

    https://iseai.org/ . International Society for Environmentally Acquired Illness

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    1. Hi Judy! Thank you so much for thinking of me and sending me this information. I looked up the ISEAI and the president has a practice here in Tucson. I looked at everything on their site and her site and it looks like they dealing with illnesses that are caused by mold. I don’t think I have a mold issue. We had our house in Durham tested for everything when I started getting so sick, and we have been as chemical and scent free as possible for many years. I saw a functional doctor in Charlotte, and they did a lot of blood work that showed nothing. They wanted me to go on a LOT of supplements, but I felt like it was all about the money since the lab tests didn’t show reasons for them.
      Was the doctor you saw on the conference focused on what mold causes?
      I’d like to know what he said.

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  9. Hello Wendy, I’m Jayne, a newbie to this blogging show and also writing about chronic pain at SeeJayneRun.com. I hate it when people tell me that they know how I feel, but sweetheart, I really do think I know how you feel. I, coincidentally, was diagnosed with migraine at the Mayo Clinic in Rochester when I was just 14. This was a long time ago and the drug they prescribed for me was actually pulled from the market some years ago. I learned to manage the migraines and they finally disappeared by my early twenties. But at age 39, I took a bad spill and for 10 years I had debilitating chronic headaches that would last for months, then a few days respite, and then start all over again. I felt as though I had an ice pick lodged in my eyeball. Any movement was shattering. No migraine medication would work. I would lie in bed for weeks on end in a cool darkened room, feeling as though my life was over. I would finally get release, do the simplest thing and trigger another headache, starting the whole cycle over again. Finally, after 10 long years, I was finally diagnosed with occipital neuralgia and am able to manage the headaches now with steroid injections every 6-12 months. Of course, what I am telling you doesn’t give you one bit of relief. But I tell you this because you are not alone. I understand the misery. I understand the lost days that merge into weeks and then years. I understand the agony of the constant piercing, stabbing, pounding, sickening pain that will just not go away for a moment to give you some kind of relief. Although my visit to Mayo was over 30 years ago, I have had many family members and friends visit in recent years and they have all felt as though they made the right decision. I would urge you to make the trip. It will be agony but there will be a chance for release. I would love to keep in touch with you and I pray that this terrible journey of pain eases. Please feel free to visit me any time if you’d like to chat. I DO feel your pain.

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    1. Hi Jayne, I just found your comment in my Spam file! I’m so glad I happened to look in there, something I rarely do, I don’t know why I looked today…fate 🙂
      I’m so sorry you have had to deal with so much pain, I hate that. I’m glad they found the cause, and you are getting some relief now, but it’s so hard isn’t it? My heart goes out to you.
      I’m about to write a follow up post because I did get in to see my doctor this week and started the SPG Block treatment, I am getting some relief, hours so far, not days, but I have left the darkness. 🙂
      If this doesn’t work, and I feel like we just keep spinning our wheels here I will take that trip to Mayo. I don’t think 110 miles is far at all in the grand scheme of things.
      Thank you for coming by for a visit, sharing your story, and reassuring me that I’m not alone. It has been hard lately.
      wendy

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      1. Wendy, I’m so happy you found me in your Spam file and so relieved you are getting SOME relief from this monstrous headache! I have never had an SPG block but know that it can be an effective pain modality. My fingers are crossed that the hours turn into days and then into weeks. My very best wishes to you! I hope we can keep in touch!

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    1. Thank you Jayne, I saw your post, I was on my phone and couldn’t comment, but I read it! You are a dear to come and check on me. I did read this on the day you sent it and it meant a lot to me. You are so sweet. I didn’t answer right away because I just feel so bad that things aren’t better. I’m having a hard time. I finally got a post up about it, I wanted it to be a good post, but it’s full of negativity I’m afraid. Well I hope it doesn’t seem like that, it’s just how it is. I’m frustrated that’s all. Thank you again. you are a dear. xo

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      1. Mo worries Wendy!! CRAP that you aren’t getting more relief! Of course you must be having a hard time and feeling extraordinarily frustrated. Who wouldn’t in these circumstances?? I hear you Wendy. Loud and clear. I read your new post and do not think it’s full of negativity. It’s the facts, simply stated, without self pity. Hang on, dear. I’m always around for a chat. 3>

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