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Frustrated with (Lack of) Treatment

  • By RogueRose

    Hello everyone. I am new to this forum but not new to migraines. I am glad I found it as I hope to find some folks who have similar issues that I can discuss it with. Seems like mostly I just find people that say “I had a headache….once” when I tell them I suffer from migraines. I’ve always had headaches ever since I was a kid – but they were relatively infrequent. They’ve become more and more frequent as I get older. Over the years I’ve cut out certain triggers (pretty much never ate chocolate). Cut out caffeine because it gave me heart palpitations and overly sensitive to it. Now when I do have some it gives me a headache. I used to be able tolerate alcohol fine but also over the years I’ve had to cut out certain kinds of alcohol – first wine, then beer, now it seems like all alcohol will give me a migraine.

    Recently (September) it seems like I have a dull headache every day sometimes progressing to migraine. Triggers (other than food) include: heat, weather/pressure changes, sleeping a certain way, cardio exercise, lack of drinking enough water in a day, being upside down for whatever reason (like looking under the bed), smoke, etc. I am so frustrated because I feel like I cannot lead a “normal” life. At Thanksgiving I couldn’t have a glass of wine at the toast with my family nor sit out by the fire pit after dinner. I have to be careful about loud noises and getting over excited. I like to go hiking in the great outdoors, but have to be careful to not overheat myself and drink close to a gallon of water a day. It’s constant “living in fear” (or worry) with a purse full of drugs. Who wants to live like that? I don’t.

    In September after a straight week of migraine I went to a migraine specialist here and they did a number of tests – allergy tests, stress tests, vertigo tests, ordered an MRI. They found out that I indeed have allergies – so I got put on an allergy medication. On the stress tests I was on high end of moderate, but not quite enough to say definitively that was the cause. Vertigo I was fine. On the MRI they found out that I had degenerative vertebrae, a chip out of one vertebra, a slightly slipped disc. They also found that the blood vessels in my brain were “malformed” but that was probably congenital. I found out my grandmother had a similar issue.

    Anyway the headache specialist has had me on some drugs while we try to find one that works while we do physical therapy. I’ve been seeing a chiropractor for a couple years now and a massage therapist on and off. Pretty much any professional who touches my back/neck/shoulders cringes from all the knots and muscle scar tissue. The physical therapist has been doing e-stim with heat, ultrasound, laser, and massage for 12 sessions 2x a week. I personally feel like there’s been no progress made. The headache specialist thinks there has been. So she prescribed 12 more sessions. We have also added dry needling sessions to try to break up some of the scar tissue.

    The drugs I’ve been on: rizatriptan (didn’t work at all, stopped taking it). Cambia (worked sometimes, still take it). Zomig (hated it, worked sometimes, made me nauseous and drowsy, stopped taking it). Now I’m trying Sumavel and Replax (obviously not at the same time). I also take Topomax as a preventative.

    I’m due for a follow up MRI and an MRA to take a closer look at the blood vessels. I’m just kind of frustrated that we’re still doing all these drugs and physical therapy…and I feel like we’re still not positive what is causing my headaches. Is it the messed up muscles in my back? The blood vessels? The disc? I usually am an all natural/holistic person and I hate relying on all these drugs but when it hurts, I don’t care I’ll take whatever to make the pain stop. And along those lines, I would like to hurry up and get off these drugs as soon as possible.

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  • By merrie

    Hi RogueRose,

    I feel your frustration. It can be very trying to stay patient with the migraine process. I have been on probably 25-30 preventative meds so far, over the course of the last 4 years, and several abortive meds as well. Unfortunately it is a long, process of elimination game with what will work, and what won’t. You definitely should continue pursuing the back and blood vessel issues. Maybe they are contributing or causing, but in the mean time, keep looking for a medication that will help when you get a migraine. Good luck to you.
    Mer

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  • By Jules2dl

    Hi RogueRose ~
    I too feel your frustration. The hard truth is that you may never know what the cause of your migraines is. I’d venture to say that the majority of migraine sufferers don’t know what causes their headaches. That’s one of the reasons migraine is such a frustrating condition to have, not to mention treat.
    It’s encouraging, I think, that your exams have turned up things to look in to, such as allergies and the blood vessels in your head. So often all of the tests come out normal and end up being dead ends. They are much better at eliminating possible causes such as tumors, etc., than they are at defining what mechanisms are at work.
    The good news is that you don’t necessarily have to know what’s causing your migraines to get relief! That’s why they keep throwing meds at us, hoping to find one that works. It’s certainly difficult to be a patient patient, but hang in there!
    Best wishes~
    julie

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  • By Tammy Rome

    RogueRose,

    I know it can be terribly frustrating to try so many treatments and have so little progress. Has your specialist not explained that Migraine has no known cause and no cure? The best we can all hope for is good management of our condition by reducing the frequency and severity of attacks and aborting the ones we do get more quickly.

    All these tests are to look for other things that might be causing your pain that are not Migraine. If something is found, then it is either an exacerbating factor (like allergies or muscle knots) or the cause. If the tests reveal something that is the cause of your pain, then you don’t have Migraine. You have something else

    It sounds like your doctor is on the right track. The only other test I am aware of is a Sleep Study. If you have a sleep disorder, it may be making the migraines harder to treat. By getting a diagnosis and treatment for any pre-existing sleep disorder, you might find that you respond better to migraine medicines.

    Lastly, it can take up to 90 days of use on a single treatment to know if it is helping. You and your doctor can track your progress using a Migraine Diary. In it, you note the time the attack starts and stops, anything you take to stop it, anything you were exposed to that might have triggered it, the severity of the pain, and any other symptoms like nausea or light sensitivity. By tracking your attacks, you can see objective evidence of a particular treatment’s success or failure.

    Here are some links to articles here on Migraine.com that you might find helpful. In the meantime, please write back and keep us posted on how you are doing.

    https://migraine.com/pro/preventative-treatment-for-migraine-overview-and-approach/
    https://migraine.com/migraine-treatment/migraine-medication-relief/
    https://migraine.com/migraine-causes-and-triggers/
    https://migraine.com/migraine-meter/
    https://migraine.com/migraine-diagnosis/migraine-diagnosis-tests/
    https://migraine.com/living-with-migraine/migraine-and-sleep-disorders/

    Tammy

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  • By RogueRose

    Thanks for the replies everyone! I am glad to hear that I am not along. I know there is no cure or treatment for migraines – I just want relief of some sort. I am becoming more and more incapable of having a normal life. I am pretty much house-bound. I take a medication and it works for 10hrs or so and then I get another headache. I can’t go out and do things (much less a job) without planning my day.

    The MRI and MRA found a tiny malformation in my blood vessels that form a small tumor (cavernous angioma) that is leaking blood into my head (but not recently). And it also found a “maybe” aneurysm. I have to get a cerebral angiogram to take a closer look of both. They said that they most likely will not do anything for either since they don’t think that they’re causing my migraines. I will have to get yearly MRIs and MRAs to monitor them.

    I have been given tons of triptans….none work for long term. I’ve now been waking up at night with migraines even though I never used to before. I am waiting on getting approval for botox, but that’s not coming quick enough. I feel like a ghost of myself. I just want the pain to be managed.

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  • By Katie M. Golden Moderator

    RogueRose,
    I’m so sorry you’re dealing with this. Even though it’s likely not the culprit, it still must be scary to hear that you have a brain tumor.

    I’m glad you are going to try botox. I wrote an article about my experience with Botox and I wish someone had told me these things before my first injections. Take a look so you can be prepared when it finally gets approved.
    https://migraine.com/blog/botox-basics/

    And if triptans aren’t working, you may want to ask your doc about a drug called DHE. It’s a different class of drugs. It helped me when triptans stopped working.
    https://migraine.com/migraine-treatment/dhe-45-for-migraine-headaches/

    Keep us updated!
    -Katie
    Migraine.com Moderator

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  • By Anonymous

    It is so important when dealing with chronic migraines to not medicate them every day, especially with triptans (maxalt, immitrex, etc) or opiates. When mine were daily I planned my week around days I could take medication. Taking abortive or pain medication daily will make the migraines worse.

    Instead it might be beneficial to try different preventives. I went through 4-5 before finding one that tolerated and helped, and I still needed to add botox on top of that to get relief.

    If work or other obligations don’t make med free days possible it may be worth asking about nerve blocks which may buy time until an abortive kicks in.

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  • By AlwaysInPain

    Four years ago I was diagnosed with a Cavernous Malformation in my left frontal lobe. Its too deep to do surgery so they are just watching and managing it. Until the first bleed I never had headaches. Now I never not have headaches. Now over top of my headaches I am getting really bad pain behind my left eye. Sometimes I get complete white out vision but it seems to clear up instantly. Most of the time my left eye just gets really bleary and/or I get dizzy. My Neurosurgeon has pushed me off to Neurology because he said they don’t want to do surgery because of the risk. Neurology has pushed me off to a pain specialist because he can’t find anything that works to ease the pain. Now my Pain management hasn’t a clue what to do with me. They have prescribed everything to me and nothing is working. The only thing that kind of takes the edge off is Oxicodone (and that still didn’t take the pain away) but they now became a Opiate free clinic so they stopped prescribing that. They wanted to prescribe me Suboxone or something like that hut I heard that’s bad stuff so I do t want to even try it. They also mentioned Botox but since the Nerve block with six shots didn’t work I’m leary about having them put 30 more needles in my head. Everyone so far is trying to treat it like Migraines but everything they are trying isn’t working. I dont think they understand that’s these are not normal Migraines. If anyone knows of anything that has helped their Cavernoma’s please share. Rogue Rose hang in there someone has to know something that can help

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    • By D Williams

      AlwaysinPain, you really are in a tough spot. I know what you mean about the Oxicodone, it the only pain killer I can take now and it doesn’t do much for me either but take some of the edge off. I really am stumped on what you can do and I know its no fun being passed around like a sack of potatoes. I really hope that someone in the medical field can help you and I’m really surprised that your Neurosurgeon passed you down, if anything I thought he or she would’ve been the one who could’ve helped you the best . I really do hope that you will find relief very soon.

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  • By D Williams

    I would love to see the Pharmaceutical companies come up with some treatments for people who have had heart problems and can’t take Immitrex anymore or any other new drugs where if they say “should not be take by people with heart issues”. I can’t do the Botox because the number of migraines I get now would not be covered by insurance. Even the Oxicodone I take doesn’t really help a great deal, it will take the edge off but not all the way and it is better than nothing. Now with the “Opiod crisis” as everyone is now calling it, those of us who don’t abuse it are put under a spot light and I am made to feel like a criminal for needing a pain killer for migraines. Does anyone know how to contact the correct people in the Pharmaceutical companies in research to say don’t forget about the those of us who have migraines who have heart and other medical issues who can’t take your new medicines. Find things to work for us too!

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