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Diary of a Migraine~ From the Head it Inhabited: Part 2

A few months ago I was admitted to the hospital for 10 days with Chronic Intractable Migraine. The goal was NOT to get my pain level to zero, as that does not happen with me, I am NEVER without migraine pain. It was simply to get me back down to “functioning” which is about a 6 or 7 on the pain-o-meter… My hope is that others may recognize some issues and be able to talk to their doctors about how things can be done differently.

Hospital stay

April 9th-17th 2018

We thought, “WOW! This is going to be great!” No waiting for 12 hours in the ER with really sick people AGAIN. No inquisitions about whether I REALLY was a migraine sufferer or just looking for my next drug fix. A real plan of attack for this round! Wahoo! Pipedreams… I think there was some kind of plan of attack, but I was never clear on WHAT that plan was!

Reality vs. expectations

Being at a teaching hospital you have not only your main doctor but as we lovingly refer to them, his or her “band of minions” that scurry around the head doctor. I EXPECTED that my migraine doc would be overseeing my care in the hospital the REALITY was that a hospital neurologist was my go-to doc (and his minions) were my care team! There was an initial plan which was followed. The infusion of DHE over the course of 3-5 days.

According to www.rxlist.com, DHE or Dihydroergotamine is in a group of drugs called ergot alkaloids (ER-got AL-ka-loids). It works by narrowing the blood vessels around the brain and affects blood flow patterns that are associated with certain types of headaches.

I EXPECTED that on top of the DHE treatment that we would also include pain management, nausea management, and other aspects of migraine management. The REALITY was the DHE did little to help and the management of pain and nausea while attempts were made seemed futile. I also EXPECTED that my migraine doctor was being consulted along the way, the REALITY was this was not really happening.

Feeling stressed instead of feeling better

I was getting frustrated and depression was seriously setting in. The pain was actually getting worse and we were in a tailspin! To me, the answers were so simple, give me the cocktails that I KNOW work, however, they included either dilaudid, morphine, or some other form of controlled substance that due to the whole opioid scare, doctors and hospitals seem to be unwilling to utilize! But when you have spent 6 days in the hospital and they run your blood and urine daily… They are right there to monitor everything, it makes no sense… Except to cause more stress and pain to the patient! Whatever happened to Do NO Harm?

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Marysu
    7 months ago

    I am so sorry you had that experience! As an RN I referred to the teaching team as the Guinea pig service because they threw so many ideas to try into the mix. They did not listen well to the patient, especially one like yourself with years of experience with migraine. I also have chronic migraine and because of changes in Virginia state laws I no longer have access to one medication I have taken for decades with good results. My prescribing Doctor retired and no one wants to go through the hoops the state has put into place to allow me to continue to have access to an opioid. So my headaches are out of control and the meds I have are not doing the trick. The opioid was a very low dose but it worked! Not everyone who takes an opioid is an addict but you’ll be treated as if you are. Sad state of affairs these days!

  • ShakingthePainAway author
    7 months ago

    OHH Marysu I can so empathize!! The whole “can’t give you that med anymore” routine! Living in Florida I love the barometric pressure changes associated with thunderstorms, Tropical storms and little things like HURRICANES!! Needless to say for the past week or so my livable stage of pain of 6 has been an 8+.
    We can only keep our voices heard with our congressional leaders and doctors that we are serious and mean business!

    Thank you for your comments!
    Gretchen Church~ Team Migraine.com

  • Joleen1966
    7 months ago

    This article stresses me out. I always try to think there is light at the end of the tunnel. Which in my mind is help from hopitals and doctors. It seems like you didn’t have help at all. Why doctors are so afraid to give us what we need to try and stay somewhat “normal” — functioning. I saw a headache specialist in Boston for a few years. He did all kinds of tests trying to find out what caused my migraines. I was chronic then but there was no diagnosis for the chronic migraine back then. He told me I would unfortunately be on pain killers for the rest of my life because they are the only thing to back down the migraines some. If he knew this why don’t other doctors? My PCP is great but I do feel like a criminal calling in for my refill. We shouldn’t feel like a criminal. We should feel like sick people trying to feel better. Trying to survive! Trying to get up and make it thru the day.

    Thank you for sharing. I am so sorry you had to go through all of this.

  • Joleen1966
    7 months ago

    This article stresses me out. I always try to think there is light at the end of the tunnel. Which in my mind is help from hopitals and doctors. It seems like you didn’t have help at all. Why doctors are so afraid to give us what we need to try and stay somewhat “normal” — functioning. I saw a headache specialist in Boston for a few years. He did all kinds of tests trying to find out what caused my migraines. I was chronic then but there was no diagnosis for the chronic migraine back then. He told me I would unfortunately be on pain killers for the rest of my life because they are the only thing to back down the migraines some. If he knew this why don’t other doctors? My PCP is great but I do feel like a criminal calling in for my refill. We shouldn’t feel like a criminal. We should feel like sick people trying to feel better. Trying to survive! Trying to get up and make it thru the day.

  • jmedlin
    7 months ago

    Yes this is an issue. I have had great effect by mixing opioids with other medicines. I too am not usually free of symptoms but have been able to medicate to some functionality. I have to constantly justify and ask for repeat scripts . I have told my Dr all the things opioids help with , not just pain. I have a method of limiting how many I take even if memory is impaired or brain fogging.. This probably means that I am dependent, but as I look back and realise just how long and pervasive migraine has been I’m not expecting it to go anytime soon . We don’t ask diabetics to go without medications . I do realise escalation of meds is a problem so that is where I take my fight. Going without meds would mean I haven’t got any sort of life. All I can think is that people still think migraine is a bad headache and while over the counter pain relief may be good synergists they do not even have a noticeable effect on their own

  • ccf23
    7 months ago

    This is horrifying. To be in a place where you are supposed to be taken care of and safe but find the opposite. I am so sorry this happened to you. I avoid the ER & after reading this, the hospital. I have the same diagnosis and I can not function at a pain level 6/7. I lose my cognitive abilities at a 6. Never mind the pain. You are so strong! Thank you for sharing your experience.

  • Bskuhl
    7 months ago

    This supposed opioid scare is causing many many people to suffer needlessly. I know a hospice nurse where doctors have been hounded so much by the DEA and FDA-guidelines pushed at them also pharmacies being hounded by the DEA as well, that even hospice patients cannot get the pain relieving medications that they deserve to be comfortable at the end of life without the government dictating that they do not deserve it. Disgusting!

  • darnapar
    7 months ago

    The pendulum swing from hand out drugs like crazy to we are not giving anyone any narcotic is becoming just as dangerous to patients. To many are in pain, developing depression issues and some are committing suicide. We need to find a workable medium in this country. Politians need to get out of trying to be drs.

  • Bskuhl
    7 months ago

    First things first, there will always be drug addicts and drug users. Also during this opioid crisis as they call it notice how they don’t differentiate between legitimate drug use and illegal drug use deaths. But to comment on your point, doctors should be listening to their patients and treating them individually without regard to government or Insurance mandates or dictations. I say individually because any patients won’t respond as others especially with opioids and thus treated to the point to where they are not in pain not just to a certain mg dosage per day. Of course I mean in the hospital where you are monitored constantly. Doesn’t this all seem logical and rational?

  • Deborah Thue
    5 months ago

    Yes! Why is it that whenever we hear statistics quoted about drug related deaths, they fail to differentiate between legal and illegal drug use?!?!

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