Desperately seeking normalcy

I’m a 33-year-old married woman with no children and I live in the Northwest US. I had my first migraine when I was 8. I had them periodically (about once a month) during my teens and then more frequently (2-3 times a month) when I was in college. At that point I was officially diagnosed as having migraines and given prescription rescue and preventative medications. After college they seemed to dissipate so I went off the medication and was only getting them every couple of months and could manage them with over-the-counter medication (Excedrin). In 2007 they became chronic. Since then the fewest headache days I’ve had in a month have been 18. I haven’t had a full headache-free day in over a year (I’ve only been headache-free for a couple of hours at a time).

My mother and her sisters all have migraines as well. I’ve eliminated or already didn’t partake in the most common trigger foods (caffeine, cheese, citrus, chocolate, alcohol, cured meats). I exercise regularly, try to maintain a regular sleep schedule, and am well hydrated. I generally have a hard time being in public places due to the lights and noises. I have a particularly hard time with fragrances – they’ll either exacerbate the pain I already have or cause it. After going out in public (e.g. the grocery store or a doctor appointment) I usually have to lay in a dark room for a few hours to recover from the impact of the the light and noise. When I was working, I’d come straight home and have to lay down immediately until the next morning, only getting up to walk the dog.

Over the past 7 years I’ve been on at least 12 medications in various dosages. Some seemed to work for awhile before stopping. Others never worked at all. I’m currently taking Naratriptan. Sometimes it helps a bit and other times not at all. I’m nauseated most of the time and actually vomit a couple of times a week. On a good day, my pain level is about a 4, generally meaning I’m nauseous, my head is throbbing, and I feel like I have a tight rubber band around my head at my temples. At my worst (probably 1-2 times a week), I’d say my pain level is at a 9, where I’m in tears with throbbing pain (particularly over my left eye), I have severe pain in my neck and shoulders and am either nauseous and/or vomiting. In these moments I take more Naratriptan, sit in the bathtub and run a hot shower over myself which sometimes helps a bit. If it doesn’t, I take codeine and try to go to sleep. Codeine used to always put me out but has been less effective the past couple of months.

Some new symptoms I’ve had recently have been tingling in my arms and problems with my speech, where I struggle to form sentences, the wrong words come out or I slur a bit. My husband was alarmed a few months ago when apparently the left side of my face was sagging. I started hearing a throbbing/buzzing noise in my house and thought an appliance was on the fritz but my husband didn’t hear it and I started to notice it when I was outdoors as well. My GP (general practitioner) believes it to be tinnitus. At times, I have a hard time changing levels (standing, sitting, bending, etc.). I have aura a couple of times a week and occasionally my vision is blurred. Almost every morning I wake up and think there’s a car outside blasting their bass but it’s just my head throbbing.

I’ve yet to go to the ER for my migraines. I consider it sometimes but when I think of being in a waiting room for likely hours (since I assume I’d be pretty low priority) I fear I wouldn’t survive it.

For the most part, I’d been working with my GP. In 2012 I started seeing a headache specialist (a neurologist) and tried a number of medications and herbs/vitamins, with little to no lasting improvement. That doctor made me a little uncomfortable (just a bit socially awkward) and after no progress I stopped going and reverted back to my GP. She eventually suggested I see the neurologist at her medical center, saying she should specialize in headaches. I’ve been seeing that neurologist for a little over a year. After a visit I had with her today, which I’ll share shortly, I don’t think she’s a headache specialist and am trying to switch to a different one.

While I’ve been in pain nearly every day for years now, I was still managing to function (work/socialize) for the most part, but about three months ago I hit my breaking point. Aside from the new symptoms, I don’t really think they’re worse, I just can’t fake being normal any more. I have an intermittent leave of absence at work where I can miss up to three days per month. I missed four in mid-February due to a very bad migraine just before a planned vacation. My doctor was not available by the fourth day so in desperation I decided to go to a chiropractor and set up an FMLA for the four days. As of my planned vacation date I didn’t feel better and considered skipping my trip to Mexico but ended up going. The trip was rough. I felt ill throughout but managed to fake it when in the presence of others. The plane ride home was a nightmare and I thought I might not survive. Looking at the photographs from the trip, I was alarmed to see the left side of my face sagging in most of them. I was supposed to work the day after I returned but felt so awful I couldn’t. I felt extremely ill for three days and tried to work on the fourth, despite not feeling better. Within the first 3 hours, I lost my speech a couple of times, felt the tingling in my arms, started vomiting and had a meltdown (crying). I called my doctor and told my supervisor I was going to try to take an extended LOA.

I was approved to take one month off. On the day I returned, I didn’t feel well at the start of the day (pain level of about 4) and by the end of the day I was at a 7. By the end of the night I was at a 9 and unable to sleep. I stayed at a 9 for the next five days and applied for another LOA, which comes to an end this Friday. I’m nervous about going back because in the past two months I think I only could have managed to work a full or partial day on two days.

I’ve been seeing the chiropractor for two months now and while I haven’t seen an improvement with my migraines, some of my neck pain has improved. I started acupuncture a month ago and haven’t seen improvement yet. I went for a consultation for Biofeedback yesterday (recommended by my doctor) and have my first session next week. I feel a bit hopeless and am not sure how long I should give these things a shot. When I ask how long it’ll take to see improvement, I tend to get very vague answers boiling down to “it depends on the person.”

I’m trying to put in the effort to get better. I want to go back to work and not feel terrible. I want to be able to run errands and clean my house without taking twice that time to recover from the effects of those activities. I’m really hoping some sort of treatment will pan out.

I’m currently very emotional after an experience I had with my neurologist today. While she didn’t actually say these things to me, I felt she treated me like I was a liar, crazy and making things up or that my condition isn’t real. Full disclosure, I went in at a pain level of about 5 (head throbbing) though that didn’t come up in conversation. When she off-handedly said “how are you?” as she entered the room, I did say “okay.” I might be being over-sensitive, but my mother and a friend both think her behavior was inappropriate. I’ve outlined the conversation below (to the best of my recollection) and if anyone would like to share an opinion on whether I should make a complaint about her, I’d welcome it.

As further background, my neurologist put me on Verapamil last fall and said if that didn’t work, the next steps would be either Biofeedback or Botox. The Verapamil didn’t seem to make a difference so I went back to my neurologist and she said I needed to pick Botox or Biofeedback myself, that she couldn’t tell me which would be better. She gave me some information on each and sent me on my way. I went back about 2 months ago and pressed her for an opinion or recommendation. Since I don’t love the idea of injections and she said Biofeedback would have no side effects and is more affordable, I decided to try Biofeedback. She said to come back once I started Biofeedback and she’d put me on a preventative medication at that point. We also decided to request approval for Botox from my insurance as a back up. I wasn’t able to get a Biofeedback appointment until a month out (which I had yesterday). At my last visit with my GP (to fill out my LOA paperwork) she suggested I take it to my neurologist next time, that the neurologist might better equipped to how long I should be out, since I explained the issues I was having with regular activities and she thought permanent disability might be needed. The plan today was to be put back on a preventative medication to complement my Biofeedback training and fill out my LOA paperwork.

Doctor: So you are starting the Biofeedback?
Me: Yes, I had my first consultation yesterday where they just asked me lots of questions and I have my first actual appointment next Monday.
Doctor: How many appointments have you made?
Me: Just the one so far as it was the only one available and I’m supposed to call continually to see if there are cancellations.
Doctor: Okay, so you have been on preventative X, X, X and X and didn’t respond so let’s try X.
Me: Okay.
Doctor: I noticed when you are talking you are tensing up so let’s give you a muscle relaxant also.
Me: Okay.
Doctor: Has anything changed with your headaches?
Me: About 3-4 months ago I started feeling some tingling sensations in my arms.
Doctor: How often?
Me: About once to twice a week.
Doctor: How long do they last?
Me: A few seconds.
Doctor: In only one arm?
Me: Primarily my left arm but I felt it in my right arm once. It first happened when I was working so I thought it might be from typing all day, but I’ve been on LOA 2 months and spent very little time typing and am still feeling that.
Doctor: You’re still pretty young. It’s unlikely a stroke. Anything else different?
Me: I’ve been hearing a pulsating buzzing noise, at the back left side of my head and feel a vibration with it. I originally thought it was an appliance in my house that was on the fritz but my husband doesn’t hear it and I later took the dog for a walk and could hear it outdoors. I asked Dr. GP about it last time I saw her and she thinks it’s probably tinnitus.
Doctor: Do you have any hearing loss?
Me: Maybe. My husband has to repeat himself a lot. I think he’s a mumbler but he thinks I can’t hear. I usually watch television with the captions on because I often can’t make out what they’re saying.
Doctor: You’re pretty young for hearing loss.
Me: I have been wearing a headset for about 15 years on a daily basis for work.
Doctor: That’s just normal noise though. But I’ll refer you for a hearing test.
Me: Okay.
Doctor: Anything else?
Me: One of the things that prompted me to try to go on LOA was I’ve been having issues with my speech. A coworker asked me a question and I answered and they gave me a confused look. I asked what was wrong and they said I hadn’t made any sense, that I used words that I didn’t think I had and in a weird order. That happened a couple of times.
Doctor: Well, let’s get you an MRI. I’m very sure your brain is totally normal but we can check to be sure.
Me: Okay. (I’m very nervous at this point-the idea of an MRI scares me.)
Doctor: I got paperwork for your leave of absence. I can fill it out but there is one question that I cannot answer that is often a problem and it is “when is the patient able to return to work?” I would have to say “today” because in my opinion you are normal. But you could go back to work and say you have pain and pain is subjective and I have no way to prove it. I have had other patients around your age who lost work because of this but I cannot say when you can return to work because there is no way to know. You know, maybe you need to find a different job. You take phone calls. I don’t think that should be stressful but maybe it is for you. I don’t know.
Me: I guess where I’m concerned is that I have pain every day. I tried to return to work after a month and worked one day. I had a headache when I started the day at a pain level of 4 and by the end of the day it was at a 7. By the end of the night it was a 9 and I was unable to sleep and it stayed at a 9 for four more days. I’m having a hard time doing normal things, like going out in public like the grocery store or walking the dog. (I am feeling defensive and that she doesn’t understand what I’m dealing with daily at this point.)
Doctor: Well, I cannot say when you will not have pain.
Me: So, there’s nothing I can do? (I feel hopeless at this point).
Doctor: Well you can try the new preventative.
Me: How long do you think it will take to work?
Doctor: Well, we’ll have you take 1/2 a tablet for 5 days, then a full tablet for 5 days and then two per day for 5 days.
Me: Do you think it will help me immediately? Because I’m in pain all the time.
Doctor: I cannot answer that. It could work immediately or it could not. You keep trying medications and do not respond. I do not know why you do not respond. In my opinion, you are normal so I have to say you are normal. I can refer you to a psychologist.
Me: Why would i go to a psychologist? (I am simultaneously confused and angered by this.)
Doctor: Because it sounds like you have a phobia if you cannot go to the grocery store or work.
Me: I don’t think I have a phobia. I’m not afraid to go out. The lights and noises in public bother me, making me feel worse and it takes me hours to recover once I return home. I have pain just being home where I can control the environment, with the lights off. (I am wiping away tears at this point.)
Doctor: Maybe you have anxieties. Going to a psychologist is not that much different than Biofeedback.
There is a long silence. I have shut down and do not respond because I feel like she’s just told me I don’t really have pain and am crazy. I just wipe the tears away as I consider grabbing my purse and walking out. She stares at me.
Doctor: I’ve written you a prescription for preventative x, and requested the MRI and hearing test and I’ll see you in two months.
She quickly exits. I immediately follow, veering to the exit as I have tears streaming down my face and walk down to the check-in and ask to make an appointment with my GP. I go to my car and sob for several minutes before calling my mom and best friend, neither of whom answer. My mom calls me back shortly and I ask her to come over after work as I had an upsetting appointment with my neurologist. My best friend calls me back and after I explain she says to find another doctor since that one hadn’t helped me anyway. I immediately tried to arrange an appointment with a different headache specialist recommended by a friend of a friend. My mom later agreed with my friend.

I do not want to see or speak to my neurologist ever again and am trying to decide whether to complain. Of course this experience has bumped my current migraine up to a 9.

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