Personal Post: Life with Migraine
I'm sure you all know someone who has migraines, and if you've never experienced a migraine before, you may think it's "just a headache". It's not. I can assure you that.
My battle with consistent migraines began sometime around 2009. I remember the very first time I had one so debilitating I ended up in bed, all day. It was so bad in fact, that I vomited all over my bed and couldn't even clean it up until until hours later when I could get up.
The sounds.
The lights.
The scents.
The movements.
The heat.
The cold.
All of which cause a migraine to get worse.
I never really knew that migraine can be so debilitating, until I had one. Sometime around 2014, they became even more frequent and more severe. I began my search for reasons why I get to be one of the lucky ones that suffers from these damn things! I had (have) other symptoms that go along with the pounding head, nausea and environmental sensitivities. Symptoms that pointed to Multiple Sclerosis or Rheumatoid Arthritis.... I was ultimately diagnosed with fibromyalgia. Fibromy....who????? After much research I pretty much found out that this is what they diagnose someone with when all the testing and imaging come back "normal" but you are symptomatic. I was diagnosed by a Rheumatologist, whom I will never return to, because the patient care I received from her office was so awful, I walked out of there feeling like I was the problem, and not my "normal" symptoms that put me in so much pain. I thought maybe it's all in my head. I was offered medication by another one of my treating physicians at the time, which I declined. I declined because I am that person that has a desire to fix the underlying problem, not mask it.
Fast forward to 2018. I'm going about my normal days, when all of sudden on August 1, I start feeling the nausea. I can prepare myself for what is to come the next day.... a migraine! Sure enough, I wake up on August 2, with that oh, so familiar pain in my head. My head is pounding, my eyes hurt to open, my neck hurts to move, I have sensitivity to EVERYTHING. I somehow make it through the work day....I go home and I'm so nauseous at this point that I can't even eat dinner, so I go up to bed. This migraine, however, is different than any other migraine I've had in the past. My normal migraine starts in my neck and works it's way up to the top of my head (I'm lucky to get bilateral migraines..yay me!). This migraine started more like a band across the forehead, more like how my sinus headaches start, and send super sharp shooting pains to either the left or right side of my head, and sometimes both sides simultaneously. This goes on for a week, along with flashing white lights in my eyes (which I now know are auras, I never had them before), floaters so big I feel blind in my left eye, dizziness (later diagnosed as vertigo) and a blood pressure waaayyyyyy above normal, all combined with a pounding, sharp shooting migraine. I call the doctor, go in, assuming she's going to say that I have a sinus infection. Well, my symptoms were so concerning, she sent me to the ER immediately for a stroke workup. I've never been so scared in my life. I get to the ER, they do their thing, I get the MRI (without contrast), blood work, etc. only to be told "this is JUST a migraine with aura and vertigo," you'll be fine, go home and take these new meds for the vertigo and nausea, and am told to consult with my gynecologist on stopping the estrogen I was taking at the time for the menopause symptoms I have due to a hysterectomy. So I do. I stop the estrogen, start propranolol for the migraines, as I had previously discovered that I'm allergic to Topamax AND Triptans, meclizine for the vertigo and reglan for the nausea. I also made an appointment with one of the top headache specialists in my area, which takes over a month and a half to get an appointment. So here I am now, with this same migraine, for almost 60 days before I can get into see this doctor.
Side note -- To answer the question you may be asking, yes, there is a very large neurology group in my area that I could have gone to for treatment, but they are the ones I was seeing when I was on Topamax and wanted me to wait till Monday (I called on a Thursday) to see me.... If I didn't had the foresight to go to my primary, I could have died from the allergic reaction I was having, so I refuse to go back to them)
During this time, I struggle through working everyday, school work, keeping my house in order, basically, life in general. My quality of life is not anywhere near where it should be. I finally get in to see the new neurologist and she decides to increase my propranolol, and have me come back for occipital nerve blocks. Mind you, this is toward the end of September. The earliest appointment they had for me to come back for a follow-up and occipital nerve blocks was NOVEMBER 4!!!!! Of course, I'm put on the cancellation list, which anyone who is a patient of this physician apparently never cancels, on account of how difficult it is to get an appointment, I assume.
During the time between appointments, I decide to try all of the "holistic" shit people try when they are desperate. Chiropractic, acupuncture, float therapy, vitamins, essential oils, massage, nutritionist, change in diet .... to name a few of what I wasted money on. Of course, everyone is blabbing in my ear about CBD oil, which I cannot take because it contraindicates with the medication I am on (Yes, it has contraindications and you should ALWAYS check these things before trying holistic remedies). During this time, I also go for a cervical neck MRI, to see if the damage I have there has worsened and could, perhaps, be the culprit. Nope. Barely any changes whatsoever since my last MRI in 2014, however, there was a nodule found, incidentally, on my thyroid.
At t his point, I'd give any findings to explain this pounding head I've had. I go for additional scans of my thyroid, where they find several nodules, one that is big enough to be concerning. (I actually was happy that SOMETHING turned up on testing .... too bad it wasn't the cause of the migraine!!) I have a fine needle aspiration of this nodule, which turns out to be benign, so that's good, right? Right. Although I was wishing for this to have some playing factor in the migraine, I was relieved that it was benign.
November 4 finally arrives, still struggling, daily, since August 2, I go for my appointment and I get the nerve blocks done.... the doctor tells me that it should help within a few minutes, if it's going to help at all. No help ... AT ... ALL!!! At this point the doctor sends me to the hospital for an inpatient stay to try a DHE infusion, so, off to the hospital I go. Upon arrival, I get the typical "migraine cocktail" which is of NO help at all, they try benadryl, start me on amitriptyline, and begin these infusions. I have another MRI with and without contrast (at my request). Nothing. There is literally nothing wrong me. All of my blood work is normal (for the most part, the DHE messed with my liver enzymes a bit, but nothing too crazy), my scans are clean, but my head is STILL pounding. I refused the last 2 rounds of the DHE infusion, it made me nauseous and did nothing for the migraine. On the last day I was in the hospital (4 days!!!), they decided to do a lumbar puncture. Finally someone had a good idea!!! But again, no overly concerning abnormal results were found, except for a slightly elevated intracranial pressure (pseudotumor cerebri), which they give me some medication for. I do some research and this could be the exact reason why I'm having this migraine!! Except (there's always a BUT in this story, at least up to this point!) if it were the cause of the pounding head, the lumbar puncture would have provided SOME relief... and, yep, you guessed it, it didn't.
My neurologist cannot even get me back in for a follow-up from the hospital stay she admitted me for until mid-January!! So, I'm off of work all of November, because, lucky me, I develop vestibular hypofunction, which causes me to become dizzy and off-balance whenever I'm moving. I am now referred to a neurosurgeon and PT. I have a venogram done, start PT and have another lumbar puncture done, this time including testing for MS (at my request, as MS runs in my family and I have other related symptoms). All normal. The lumbar puncture, the venogram... all ... fucking ... normal.
I'm sure you get the gist of how frustrating this all is. Especially since at my next appointment with the neurologist, she tells me that the MRI shows that my brain is beautiful, in perfect health, she can't even tell that I have migraines by looking at my MRI. This is when I finally lost it (in January, yes, it took me that long to finally lose it!!). I broke down crying, because through all of this, I'm hoping for something to show up, for some treatment to work. She tells me to stop taking the propranolol, since it's not helping, and offers me Botox..... which is great! EXCEPT THE COST!!! I cannot afford this option. So, I've been weighing the options of taking the leap and enduring the cost of the Botox, to hope it works. My next appointment is in a few weeks, at which point, I will have to decide what to do. I am going for a second opinion next Friday as well, because I truly believe that my current neurologist is not looking at the whole picture, although I've told her as much, she can't seem to see beyond the fact that I am a woman, over 40 who has had a hysterectomy. I also saw an allergist, which was rather comical, because things I KNOW I am allergic to, did not show up on the skin tests, however, he did give me a nasal spray to try to help and at this point I'll take any offering of help I can get. I've also decided to attempt to go gluten-free, which I've been moderately successful with, except a few moments of weakness where I caved, and my wonderful husband is being so very supportive and helpful.
My next steps will depend on what the second opinion neurologist has to say. I'm also considering seeing a rheumatologist as well, to rule out anything there.
I've lost quite a bit of faith through all of this, I've sort of come to the conclusion that this may just be my new way of life, since waking up one day without a pounding head doesn't seem to be anywhere in the near future.
I've made a list of "what we know" to try and lay it all out and also so that I don't forget, so if you're really interested in knowing what I'm going through, these have been my symptoms and imaging findings since the beginning of this whole bought of migraine with aura status migrainous continuous:
Welcome to the migraine jungle ... where it isn't all fun and games, but I try to find humor where I can in this all, so that I don't just completely lose it, because if I start crying, I may not stop. This pain scale was posted on a migraine support group on Facebook, which I got a little laugh out of.
I waiver somewhere between a Picasso and a Dali daily, Picasso is my daily norm, and every day I hit Dali, but it doesn't stay there. Never less than a Picasso though.
I'm not writing this for sympathy. I'm writing this for anyone who may be experiencing a similar situation, for someone who may need to hear this. You are not alone.
My battle with consistent migraines began sometime around 2009. I remember the very first time I had one so debilitating I ended up in bed, all day. It was so bad in fact, that I vomited all over my bed and couldn't even clean it up until until hours later when I could get up.
The sounds.
The lights.
The scents.
The movements.
The heat.
The cold.
All of which cause a migraine to get worse.
I never really knew that migraine can be so debilitating, until I had one. Sometime around 2014, they became even more frequent and more severe. I began my search for reasons why I get to be one of the lucky ones that suffers from these damn things! I had (have) other symptoms that go along with the pounding head, nausea and environmental sensitivities. Symptoms that pointed to Multiple Sclerosis or Rheumatoid Arthritis.... I was ultimately diagnosed with fibromyalgia. Fibromy....who????? After much research I pretty much found out that this is what they diagnose someone with when all the testing and imaging come back "normal" but you are symptomatic. I was diagnosed by a Rheumatologist, whom I will never return to, because the patient care I received from her office was so awful, I walked out of there feeling like I was the problem, and not my "normal" symptoms that put me in so much pain. I thought maybe it's all in my head. I was offered medication by another one of my treating physicians at the time, which I declined. I declined because I am that person that has a desire to fix the underlying problem, not mask it.
Side note -- To answer the question you may be asking, yes, there is a very large neurology group in my area that I could have gone to for treatment, but they are the ones I was seeing when I was on Topamax and wanted me to wait till Monday (I called on a Thursday) to see me.... If I didn't had the foresight to go to my primary, I could have died from the allergic reaction I was having, so I refuse to go back to them)
During this time, I struggle through working everyday, school work, keeping my house in order, basically, life in general. My quality of life is not anywhere near where it should be. I finally get in to see the new neurologist and she decides to increase my propranolol, and have me come back for occipital nerve blocks. Mind you, this is toward the end of September. The earliest appointment they had for me to come back for a follow-up and occipital nerve blocks was NOVEMBER 4!!!!! Of course, I'm put on the cancellation list, which anyone who is a patient of this physician apparently never cancels, on account of how difficult it is to get an appointment, I assume.
At t his point, I'd give any findings to explain this pounding head I've had. I go for additional scans of my thyroid, where they find several nodules, one that is big enough to be concerning. (I actually was happy that SOMETHING turned up on testing .... too bad it wasn't the cause of the migraine!!) I have a fine needle aspiration of this nodule, which turns out to be benign, so that's good, right? Right. Although I was wishing for this to have some playing factor in the migraine, I was relieved that it was benign.
November 4 finally arrives, still struggling, daily, since August 2, I go for my appointment and I get the nerve blocks done.... the doctor tells me that it should help within a few minutes, if it's going to help at all. No help ... AT ... ALL!!! At this point the doctor sends me to the hospital for an inpatient stay to try a DHE infusion, so, off to the hospital I go. Upon arrival, I get the typical "migraine cocktail" which is of NO help at all, they try benadryl, start me on amitriptyline, and begin these infusions. I have another MRI with and without contrast (at my request). Nothing. There is literally nothing wrong me. All of my blood work is normal (for the most part, the DHE messed with my liver enzymes a bit, but nothing too crazy), my scans are clean, but my head is STILL pounding. I refused the last 2 rounds of the DHE infusion, it made me nauseous and did nothing for the migraine. On the last day I was in the hospital (4 days!!!), they decided to do a lumbar puncture. Finally someone had a good idea!!! But again, no overly concerning abnormal results were found, except for a slightly elevated intracranial pressure (pseudotumor cerebri), which they give me some medication for. I do some research and this could be the exact reason why I'm having this migraine!! Except (there's always a BUT in this story, at least up to this point!) if it were the cause of the pounding head, the lumbar puncture would have provided SOME relief... and, yep, you guessed it, it didn't.My neurologist cannot even get me back in for a follow-up from the hospital stay she admitted me for until mid-January!! So, I'm off of work all of November, because, lucky me, I develop vestibular hypofunction, which causes me to become dizzy and off-balance whenever I'm moving. I am now referred to a neurosurgeon and PT. I have a venogram done, start PT and have another lumbar puncture done, this time including testing for MS (at my request, as MS runs in my family and I have other related symptoms). All normal. The lumbar puncture, the venogram... all ... fucking ... normal.
I'm sure you get the gist of how frustrating this all is. Especially since at my next appointment with the neurologist, she tells me that the MRI shows that my brain is beautiful, in perfect health, she can't even tell that I have migraines by looking at my MRI. This is when I finally lost it (in January, yes, it took me that long to finally lose it!!). I broke down crying, because through all of this, I'm hoping for something to show up, for some treatment to work. She tells me to stop taking the propranolol, since it's not helping, and offers me Botox..... which is great! EXCEPT THE COST!!! I cannot afford this option. So, I've been weighing the options of taking the leap and enduring the cost of the Botox, to hope it works. My next appointment is in a few weeks, at which point, I will have to decide what to do. I am going for a second opinion next Friday as well, because I truly believe that my current neurologist is not looking at the whole picture, although I've told her as much, she can't seem to see beyond the fact that I am a woman, over 40 who has had a hysterectomy. I also saw an allergist, which was rather comical, because things I KNOW I am allergic to, did not show up on the skin tests, however, he did give me a nasal spray to try to help and at this point I'll take any offering of help I can get. I've also decided to attempt to go gluten-free, which I've been moderately successful with, except a few moments of weakness where I caved, and my wonderful husband is being so very supportive and helpful.
My next steps will depend on what the second opinion neurologist has to say. I'm also considering seeing a rheumatologist as well, to rule out anything there.
I've lost quite a bit of faith through all of this, I've sort of come to the conclusion that this may just be my new way of life, since waking up one day without a pounding head doesn't seem to be anywhere in the near future.
I've made a list of "what we know" to try and lay it all out and also so that I don't forget, so if you're really interested in knowing what I'm going through, these have been my symptoms and imaging findings since the beginning of this whole bought of migraine with aura status migrainous continuous:
Pounding head since 8/2/18
Increased ICP
Visual disturbances/illusion of blindness in left eye, huge floaters
No intraocular
pressure
Nerves and FOV – no
change from previous exams
Vertigo
Vestibular hypofunction since being in hospital
Nausea
Cervical stenosis @ C3-4, C4-5, C5-6
Bulging dics @ C5-6, C6-7
Cyst @ C7
Brain MRI – clean
Thyroid nodules – benign
Poss benign parathyroid tumor
Lightheaded
Tingling in feet and fingers/hands
General fatigue
Constipation
Stiff joints/muscles
Insomnia – (this has mostly resolved, I'm sleeping fairly well since Dec since starting amitriptyline)
Dry mouth
Lumbar pain
Heart feels like it skips a beat sometimes, but no cardiac findings on
EKG or other cardiac test
Brittle nails
Lose a lot of hair
Tinnitus
Weight gain
Scalp tenderness
Craving salt
Very swollen while in hospital - possibly a result of the steroids
Word finding difficulty
Trouble putting together sentences
Welcome to the migraine jungle ... where it isn't all fun and games, but I try to find humor where I can in this all, so that I don't just completely lose it, because if I start crying, I may not stop. This pain scale was posted on a migraine support group on Facebook, which I got a little laugh out of.
I waiver somewhere between a Picasso and a Dali daily, Picasso is my daily norm, and every day I hit Dali, but it doesn't stay there. Never less than a Picasso though.
I'm not writing this for sympathy. I'm writing this for anyone who may be experiencing a similar situation, for someone who may need to hear this. You are not alone.
Peace, Love and Light,
Christine
Want to join in? Write a blog post of the same title and add the same hashtag at the bottom as I have and let's get creative together! Leave a link to your post as a comment! I look forward to hearing your thoughts and opinions in 2019!
Want to join in? Write a blog post of the same title and add the same hashtag at the bottom as I have and let's get creative together! Leave a link to your post as a comment! I look forward to hearing your thoughts and opinions in 2019!
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