The Disappointment of Failed Treatments & Rallying to Try Again

I’m really struggling with the migraines right now, both physically and emotionally. It has been eight weeks since I got Botox injections and I’ve seen no improvement in the migraines. They are actually more frequent and more severe than before the injections, though I can’t say whether the Botox made them worse or if it is coincidence. It is always disheartening when a treatment that seems miraculous for many people, like Botox or Topamax, fails. I spent January grieving for the loss of yet another potential treatment.

Intractable does not mean untreatable; it means unruly or difficult (but not impossible) to treat.” It has been five years since I wrote those words. Five years of worsening migraines and countless attempts at treatment that have all been ineffective. Clinging to the promise of finding an effective treatment sometimes feels like an exercise in self-deception.

Yet, here I am, cheered by the thought of a new drug I’m going to try and the treatment possibilities I’m going to talk to my doctor about. I’ve been talking with Hart about my plan to schedule appointments with my headache specialist for every two months and the journal articles I plan to take him on my next visit. Just as the severity of the migraines is cyclical, so is my hope for treatment and the enthusiasm with which I pursue new avenues.

The nature of migraine symptoms contributes to my wavering dedication. Fatigue, lethargy and brain fog make research and phone calls difficult. Sometimes I’m too sick to keep appointments (I’ve canceled three in the last week alone). The accompanying emotional upheaval, including irritability, anxiety, and depression-like feelings, can cause the search for relief to feel fruitless.

So, ten years after a doctor first took my migraines seriously, I continue to search. Here’s what’s next on my plan of attack:

  • Diet: I’ve been following an extreme migraine diet for three weeks. In addition to avoiding tyramine and tannins, as I wrote about, I haven’t been eating any other suspected food chemicals, such as nitrates/nitrates, sulfites/sulfates, caffeine, phenylethylamine (in chocolate), MSG, and aspartame. I’ve noticed no improvement on the diet and my skepticism of food triggers remains. I’ve recently reread ACHE’s excellent article that questions the validity of food triggers and am going to reevaluate my plan.
  • Preventive medication: My headache specialist is sending me a prescription for Sibelium (flunarizine), which is a migraine preventive commonly used in Canada that doesn’t have FDA approval for use in the U.S. (presumably because the company doesn’t want to spend the money necessary to get approved). With side effects of weight gain, lethargy, and depression, I’ve been reluctant to try it. Having spent the vast majority of the last two months in a migraine, I finally decided that if it helps, the benefits to my mental health will outweigh the potential risk. I’m still nervous, though knowing I can just stop taking it (unlike the Botox, which I have to let wear off) gives me a helpful sense of control.
  • Platelets: I know so little about this that I’m a little reluctant to even mention it. Someone on the Migraine Research Foundation Facebook page said that her doctor told her of a patient whose migraines subsided when he donated platelets. I’ve also read anecdotal evidence of people’s migraine attacks stopping when they were on Plavix, a blood thinner. What I’ve learned is that some people have too many platelets, which can cause headaches, and also that platelets “tend to become sticky and release serotonin which is intimately involved in the migraine process.”

In the first draft of this post, which I wrote last week, I said, “I am tired. Tired of being sick, tired of having to claw my way out of bed every morning. I don’t feel depressed in the clinical sense, but being sick is wearing on me.” Since then, I’ve determined that I definitely was depressed, but I also had a migraine reprieve. Over the weekend, my pain reached the low of level 3 and I spent eight hours at a level 4. I was reminded that I don’t always have a horrendous headache and that I’m not always in a migraine attack. A little relief goes a long way in bolstering my spirits. Don’t worry, Mom, I’m once again happy and motivated!

24 Responses to The Disappointment of Failed Treatments & Rallying to Try Again

  1. syd says:

    I swear, it’s just all so familiar, it’s like I could write your posts myself. The up and down – the depression that’s there one day and better the next (and my mom keeping an eye on it)… ALWAYS trying new treatments, then running out of energy, then trying something else again, and then finding that years have passed… I am so very grateful that you write this down, so that I can feel like I’m not the single only human on the planet who feels this way.

    Thank you, sincerely.

    You’re sweet, Syd! And you’re welcome — I’m so glad you find this blog helpful.

    Take care,

  2. Amber says:

    I love your blog. So often it seems like we’re living the same life (which I wish we DIDN’T have in common!). It’s good – very good – to know that there are other people out there. I always hope you have good news (like the last paragraph! Pain level 4? That is AWESOME!) and it’s inspiring to see how keep trying. I know how hard it is.

    *hugs to you* Keep trying and please keep posting.

    Thanks, Amber! I’m sorry you’re dealing with this, too. I hope you’re doing as well as possible.

    Take care,

  3. Theresa says:

    Reading this post it sounds so much like what is going on in my own head, it’s scary. I’m thankful that my journey with chronic migraine is only 2+ years and not 10. I’m currently doing a severe elimination diet and I can share my resources with your if you would like. I had to be cut down to only 19 foods for the first week and a half/two weeks but by doing that I have reduced my migraines down a pain point at least, and I have at least an hour in the morning now with no pain. Even though it hasn’t gotten rid of my migraines completely the foods I had been putting into my body definitely played into the severity of my migraines. Any relief is good in my book, especially when it makes me eat healthier (and even if I would punch a nun for a pizza right about now).

    I hope that whatever you try next will get you one step closer to getting these beasts figured out. Just never forget that you have friends around you, even if it is in cyberspace.

    *Side question* Have you talked to a DR about the depressive episodes that come with the migraines? My husband thinks I may be depressed, but I’m not like it all the time, just when my migraines get to a certain point. Just wanted someone else’s perspective on it.


    I’m so glad the diet is helping some! I’d love to see your resources. I’ll send you an email, too, but wanted to reply here also.

    I’m planning to talk to my doctor about the depression next time I see him. I’m on Cymbalta for depression (and have been on multiple other drugs in the past), but I agree that I’m not depressed all the time. Depression is considered a migraine symptom… I assume the brain activity of migraine and depression overlap, but I think of depression as a more global, not episodic, condition. So, I’m confused too, but plan to look into it.

    Take care,

  4. Timothy Bauer says:

    Dear Kerrie:

    Keep up your blogs-they are indispensable. Just the other
    day mentioned to a good friend was trying a couple of new ideas
    for my migraines. My friend said haven’t you tried about
    everything? No just about 80 or 100 different treatments-
    concepts. I try to remember-we must have hope. And take
    each day as a precious gift from our maker. So I totally
    applaud what you are doing in trying new treatments. Yes
    the ideas/treatments can be time consuming, exhausting,
    expensive, a hassle. But believe that is far superior to just
    throwing up your hands-and not trying something different.
    You may not be able to heal the migraines-but may lessen the
    quantity and severity of the headaches. Hang in there Kerrie;
    and all who are part of this blog. Please keep sharing
    your various treatment ideas.

    Peace, Timothy from Reno

    P.S. One frustration and think everyone will agree-unless you
    getting chronic migraines-it is almost impossible for most
    friends/relatives to grasp what someone is going through.
    Don’t let this frustrate you. Generally most people mean well.
    But it is like the old saying-“Unless you walk in someone elses
    shoes-you really don’t know what they are going through.”
    And that definitely applies to migraineurs.

    As always, thanks for your support!


  5. Sue says:

    Oh Kerrie, this all sounds so familiar. I had such high hopes for Topamax back in the day (2008) and it had such horrendous, nightmarish results.

    I also have an appointment next week to adjust my depression/anxiety meds. This, despite having some success with recent Round 3 of Botox injections. I think it’s important for me to be clear about “success” on that front.

    My pain doc told me that the Botox results are cumulative and will improve over time. That is good news for me, because so far the results are great but short-lived, relatively speaking.

    “Success” in Botox/migraine World means (for me) 3-5 weeks of decreased pain, with decreased frequency. In other words, my pain is down to 3-4/10 at the worst part of the day where it would normally be hitting 7-8.

    Also, it’s not knocking me down every day. I have the occasional day in that 3-5 week period where the pain is as low as 2, which may as well be 0 in terms of my unfortunate acquired tolerance for pain.

    The first time I had the procedure done, I had 3 weeks of this “success”. What I had been expecting was clear-sailing. No pain. Life the way it used to be. When even the low-level pain returned, I was devastated.

    Sorry, that’s a long way of saying, “I get it.” I SO understand the “tired of being sick” sentiment.

    Encouraged by Timothy, I’d like to ask if anyone has had any success/results with Lyrica. My pain doc keeps asking me why my GP won’t prescribe it. He tells it’s contraindicated for migraine.


    I’m glad you get some relief from the Botox. I hope it the good effects continue to accumulate.

    I haven’t taken Lyrica, but also haven’t heard of it being contraindicated for migraine. It was the hot new migraine drug about five years ago and it is supposed to help with sleep, too. I’ll ask my doctor about it next time I see him.


  6. Timothy Bauer says:

    From Timothy/Reno, Nevada:

    To Sue who posted today about anyone trying medication
    “Lyrica”. Had not heard about that drug for migraines. Did
    research on net-anti-seizure drug that they can an do prescribe for “prevention” of migraines. Looks like they start with a small
    dosage and if have no problems after a short while increase
    the dos. I noticed that you mentioned GP-won’t prescribe it-
    Your GP may be very unfamiliar on how to treat persons who
    have frequent/chronic migraines. And that could be why he
    does not recommend it. Or you could be on some
    other “prevention” migraine drug that does contraindicate it.

    Can I make a suggestion-would encourage the average person
    who has many migraines-to get a very competent neurologist.
    Do not have your GP try to treat this condition-they are not
    specialists which is what you need. This conditon is way beyond
    the average family doctors expertise.

    Anyways thanks for sharing about Lyrica-you may have given
    some other reader of Kerrie’s blog an idea that could benefit
    them with their condition.

    Sue-hope your condition improves. One day-one hour at a time-
    that is all we are promised in life.

    Timothy Bauer from Reno

  7. Kristina B says:

    I have been living with migraines most of my life and finding this blog has been a lifeline for me. Thank you for saying all the things I think and feel but cannot put into words.
    I too had botox, but it was unsuccessful. I had terrible migraines for 6 weeks, which according to my doctor, is not uncommon. I also am on the migraine diet. This diet and accupuncture are the only things that have helped me. I am currently having a stretch of really good days. I hope you continue to search for the relief you need and deserve.
    @Timothy- I couldn’t agree with you more. Its hard for non-migraineurs to understand. And this blog is indispensible for those of us who are.
    @Sue- I have tried Lyrica for migraines. I was allergic to it so I didn’t take it long. But my neurologist prescribed it for me so keep pursuing that option with your GP.
    Good luck to all.

    Thanks for the kind words, Kristina. And for the reassurance that this bad spell could be in direct relation to the Botox. I’m so glad you’re on an upswing — enjoy!


  8. Virginia Smyres says:

    You are loved and adored!
    Hugs and kisses,


    Thanks, Mom!


  9. Sue says:

    Thanks @Timothy and Kristina for the info. The problem is that I live in a relatively remote area of Canada, and the one neurologist we have in town has Zero interest in chronic migraine. His neuro exam when I saw him several years ago took less than five minutes. Ridiculous. I could have named a dozen other “in-office” tests he could have done. He was humoring me. Wrote a scrip for Topamax and that was that.

    No one here will do my Botox injections, so at great expense to the Province of Ontario, I fly about 3000 km away to a specialty pain clinic. Costs them a bundle every time. Still, at least I found that clinic – it’s very good.

    @Kerrie- what Virginia said – you are loved and adored indeed!

  10. Bibi says:

    Hope you will see some success with the Sibelium. I tried both Sibelium and botox and both did nothing for me. Botox actually made my migraines worse right after the injections. But after a while it felt nice not to have any tensions in the forehead.
    If you try a diet low on histamines, try to take 1 or 2 capsules of Histame each day. That way you could better find out if histamine is a problem for you.

    Take care:-)

  11. Gregory Gauthier says:

    “They are actually more frequent and more severe than before the injections, though I can’t say whether the Botox made them worse or if it is coincidence.”—- Interesting that you should say that, Kerrie. I had Botox almost three weeks ago, and am having almost the same experience that you had. Although no more severe, they seem are more frequent (perhaps coincidence) , certainly no improvement. The botox, as an adverse effect, has made my chronic neck pain worse.

  12. Chiropractic, and Craniosacral therapy are very effective treatments. Craniosacral therapy helps to relax you, and skilled chiropractors are also able to diagnose if its caused by things such as dysfunctions in the joints.

  13. Pam W. says:

    Kerrie, thanks so much for your blog. I can REALLY identify with your sentiments (constantly hoping the next treatment will be “it”). I’ve just completed my first round of Botox and I believe it has decreased the severity of pain but not the frequency and has added a new component of neck pain. My neurologist has done botox injections on over 1500 patients and says it is not uncommon for it to take 3 rounds and asked me to commit to 1 year of treatment. I am 6 weeks out from my first round and still have my fingers crossed. Keep up the website. I feel like I’m not alone.

    • Thanks for the kind words, Pam. I wish the first round of Botox was more successful for you. I hope you see improvements through the year. Are you doing anything for the neck pain? A physical therapist I saw last summer told me he had a lot of clients who were seeing him to try to strengthen other muscles to compensate for those compromised by Botox.

      Take care,

  14. Pam W. says:

    Kerrie, I haven’t been doing anything to strengthen the other neck muscles but will look into it. That’s something I had not thought of.

  15. Kate says:

    Hi Kerrie – good luck with the Sibelium. I will be very interested in hearing of this journey. Francesca is also considering this. My understanding is that what makes it effective over other drugs for NDPH is that it is both a channel blocker AND dopamine antagonist. One of the side effects – as you are likely aware – is depression so keep an eye on things. Keep us posted on your progress. I have heard of some actual success in curing NPDH permanently (at least for over three years) with the drug.

  16. Kate says:

    Sigh. I just realized your post is dated 2012, not 2015. I take it Sibelium didn’t work.

    • Thanks, Lori. I filled the prescription, but never took it. I’m too afraid of the possibility of drug-triggered depression. Let us know if Francesca takes it and how it goes.

      Take care,

  17. Kassandra says:

    Hey Kerrie! I just saw this, and I realize that it is waaaaayyyy after you initially posted but wanted to put my two cents in. I have suffered from migraines since I was 16 (I am now 26). It is extremely hard to find people that can relate to the pain that someone with chronic migraines feels. Recently, I have been very sick, having a migraine every single day. With the migraine comes nausea, sensitivity to light, sensitivity to noise, and even sensitivity to smell. I have been told by several doctors that because I don’t experience and “aura” that I am not having an actual migraine. I wish they knew exactly how hard my head was pounding and how much I just wanted to curl up into a ball and die. I have tried everything for my migraines. I have done the anti-seizure meds, the blood pressure meds, and the anti-depressants to try and prevent my migraines. Nothing has helped. I have tried Lyrica and Gabapentin. I have also tried the botox treatments. I went through 3 treatments before they officially declared that I had failed the Botox. I had a horrible migraine during my last round and every single prick of the needles made me wail in pain (and I’m the type of person who doesn’t usually show that I am in pain). I keep looking around for the “next best option”. My neurologist has already told me that there is nothing else he can do for me. He said that the Botox was my last option. When I asked him what I am supposed to do for the pain he just shrugged his shoulders. I take imitrex, but it is no longer working for me. I take Phenegren for the nausea. When they get really bad I go to the doctor’s office and get a shot of Toprol and a shot of Phenegren and SOMETIMES it works. I am getting so sick and tired of being sick. And because I have had the migraines for so long I have learned to “deal with them” without showing how much pain I’m in, but then no one understands that I’m in pain constantly. And what no one really gets about being in pain constantly is that it can be a very lonely and depressing road to be on. It seems like no matter how many people are here and in my corner cheering for me, all I can think about is that they just don’t understand. They aren’t the ones that are in pain constantly and they just couldn’t possibly understand. But at the same time, no one wants to be that person that gripes and complains about their lives constantly to people, so you keep your mouth shut and just smile and nod and pretend that everything is okay and even that gets exhausting after a while. I admire your persistent energy and wish that I could feel that way again. I no longer see the light at the end of my tunnel and it is starting to get extremely depressing.

    I hope everything has worked out better for you though, and I look forward to hearing about your future trials with your migraines and how you make it through them!

    Sick and Tired

  18. Samanttha says:

    I am 31yrs old have suffered from Migraines for 4 years (3 off and on and almost 1 year straight) as of Feb 1st 2016 I have had a constant headache for 11 months with MAYBE 3 days headache free. The pain levels vary and I would consider a 3 a good day and welcomed. Reading this forum lets me know I am not alone; I have so many supporters at home but they have no idea what I am even going through. It is a relief to read all of your posts and to know other people are fighting this fight too. I can feel the depression as well but for me it seems like desperation; I have tried over 20 different meds including antidepressants; all the triptans; Topamax etc… and just recently 1/15/16 I had my first series of botox injections which made things a lot worse. The severity of the headaches I am having now are almost unbearable. My neck and shoulders hurt so bad everyday and was told I cant take muscle relaxers while having botox; I cant sleep most nights because of how uncomfortable by whole upper body has become and also cant take sleeping pills. I am scheduled to see my neuro this week and I too know this is the very last plan and he will also have exhausted all of his options for me.

    Different from the group; I do show a cyst on my brain in one of my latest MRI’s and have no been referred to the neurosurgeon; but the headache specialist and my normal neurologist don’t think that is the root of my headaches and say it was an incidental finding.

    I am gong to try some sort of diet to see if my triggers could be food related but I am not too sure what the migraine diet would be- ANY HELP would be greatly appreciated- Having a forum with others who understand is actually super helpful as of recently I am just kind of breaking down.

    Also someone please tell me how you live like this because I am starting to lose it; I am not a suicidal person so please don’t think that is where this is headed- How are you working; keeping up with the house and taking care of the family? I am having the hardest time with work and actually to a point I may have to use some FMLA or something- What do you guys do?

  19. Kassandra says:

    Hey Samantha!
    I just read your post while laying in a dark room, ice pack on my head, and my head pounding (which has sadly become my norm). I wanted to tell you about the diet changes I have made that have helped with my migraines (for a little bit anyway). I have kept a food diary for many years now and have been tracking my migraines with what I eat. I have discovered 4 main things that give me a migraine: garlic, chocolate, alcohol, and soda. I have particularly found that a vegan diet helps.
    In regards to how I live, it is definitely hard. I work full time, go to college full time and have a husband and 2 children. I am like you. I am feeling like I am at the end. I just want to be normal, but the pain that I feel every day makes me extremely irritable. Next semester I am planning on taking a few semesters off. But I know it will still be hard to live day to day life. I work overnights and find that bit being awake during daylight hours helps. Well that is all I am gonna write for now. Now, I must proceed to pound my head into the wall *cries* I just want it all to stop!

  20. Linda says:

    Thirty-six years ago I began having headaches. No they weren’t related to my monthly cycle, a hysterectomy clarified that. I’ve tried it all. One headache specialist had me on a cocktail of preventatives that kept me in such a stupid that I *think* I might not have had as many headaches but I’m not sure. I slowly weaned off all this meds and tried botox. After Four treatments I am pretty sure that’s isn’t the magic bullet either. When I wake up with a headache every single day and hear someone say they’ve never had a headache I want to scream.
    I’m working with a compounder now who thinks synthetic hormones screwed my system up permanently. She is compounding natural hormones and helping me adjust the dosage in hopes that I will sleep better, have more energy and above all fewer headaches.
    If I can find this blog in a few months I’ll let y’all know how it works. 36 years is enough-The struggle is real.

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