Migraines, doctors and work…

I have been luckier than most of this site. I didn’t get migraines until I was 35. I had had one when I was around 12 but that was it. My mother and my sister struggled with them, and I thought they passed me up. Not so.

One day when I was 35 I got REALLY dizzy, so much so that I couldn’t even stand up this went on for 2 weeks. On the 3 day I got a horrible migraine. I was still dizzy and vomited every time I sat up. Afer several days of this, I went to the doctor and they sent me to a Nuerologist who did numerous test on me. Nothing was found. They sent me home and set up an appt for another specialist. When I went to him, he found nothing either except that I was having a migraine headache. This headache lasted for 21 days!

After that episode I would have migraines more often than not. They would last anywhere between 5 to 11 days at a time with varying severity in a 24 hr period. I can’t tell you how many doctors I went to. Some blew me off, some gave me pills that didn’t work and when I came back they would tell me there was nothing they could do. At this point, I was having only a couple days off a month without a migraines.

I would listen to anyone that had a suggestion and then try that. I have no idea how much money I have spent on different remedies that didn’t work. My personality changed and I was miserable most of the time.

For me, before I get my migraines, I start to yawn a lot. No doctor I dealt with believed me, nor would listen till I read something, while living in Arizona, about a Migraine center at the Mayo Clinic. No doctor had even told me about this place! So I went and they finally listened. They told me I had 2 different kinds of migraines and said I was a good canadiate for a study of Botox injections for migraine. I was set to go and then I moved.

I spent the next couple years trying to find someone again that would listen to me. I found one doctor that was convinced Topamax would work. Tried that for 3 months. After the first month, I told the doctor that the side effects were pretty bad. They told me to keep going and that they would wear off. They were helping my migraines, so I continued to use it but I lost 35 lbs in 3 months. This dropped me down to 102 lbs at 5’6″. I went back to the doctor and told them I would no longer take it. Can you belive they didn’t even say anything about the massive weightloss. Even my supervisor at work took me aside and was convinced I was anorexic!

I finally found a Doctor that told me I should go to a headache center in San Francisco at UCSF. It took a while to get the approvals and the appointment, but they came though and I went. By that time Botox had been approved. They started me on it and it seemed to work.

I finally found something that seemed to lessen my migraines and then when I do get them, they are more mild and can be relieve with Relpax. Now the unfortunate part is trying to get work to let me off to get the injections every 3 months. I’m a flight attendant and it can get complicated with trying to be in town for the appt and then have the next day off to recover from the migraine it triggers. If I’m not consistent with the injecitons, then the migraines come back with force. In fact, I missed my last appt because of work and as I type this I am on my 5th day of a migraine.

Today I was able to get up and move around more, so my migraine is at a 2. Unfortuately, my Relpax hasn’t been working and I can’t get my primary to give me anything because she doesn’t want to screw up what the headache center is doing and I can’t get the headache center to return my phone calls. It’s maddening and isn’t helping my migraines. I’m at a loss as what to do now. There are very few places that treat migraines with Botox in my area and in fact the next one is about 90 miles away at Stanford.

This is not an option as my insurance doesn’t pay for it there. So for now I suffer until my next round of injections hopefully in July… if I can ever get my doctors office to call me back!

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

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  • 3 years ago

    I feel your frustration! Go into your doctors office and get loud if you must! I have noticed that changes in elevation are one of my many triggers. Have you thought of changing jobs? Flying often may be triggering. I too am having trouble getting my dr to agree to a second round of Botox. And he himself said that the benefits increase with each application. Trying a different neuro now and he insists I try beta blockers before Botox. I have located a headache specialist 94 miles away and will try her if the beta blockers don’t work. Good luck and prayers.

  • beckys11
    4 years ago

    Make sure you tell the doctor that the staff is not returning your calls. Doctors don’t have a clue as to whether their staff is good or bad and whether or not they do their jobs. You have to make your health a priority and treating the migraines a priority. You may need to change jobs. Trust me, you don’t want to get migraines worse than they are already.

  • Essence 32
    6 years ago

    I can identify with you and the yawning. I used to think I wasn’t sleeping well at night. The yawning is different then a regular occassional yawn mine are intense stretching my entire mouth open so wide my jaw hurts. I had read under the prodromes of migraine yawning being a symptom. It is a good thing to add to my list of triggers. Good Luck

  • Theresa
    6 years ago

    Piotgal35, I started to read your story with much encouragement because I was hearing someone just like me with constant migraines and for me virtually no life. Then I kept reading hoping for a new answer. It burst my bubble when you got to Botox as your answer, as I have tried that along with everything else in the world but I pray it will continue to help you and you can work out the details of doing it in an easier way. Theresa Simard Schwartz

  • DebbyJ56
    6 years ago

    I got my first migraine at 5yrs old. After that I got one at least three times a month through my teenage yrs. Then they started to get worse. I was put on a beta blocker before it was popular in my thirties. I am now 57 and have had chronic daily migraines for seven years. I get botox every three months in my head, face, jaw, neck and shoulders. It helps the residual pain, but does nothing for the migraine pain. I have done infusion therapy, oxygen, chiropractic, acupuncture, holistic head massage, reflexology and massage. I have tried at least 100 meds and counting. I go to Thomas Jefferson Headache Center, a very popular clinic. Still very little results. My life has been diminished to live around my level of pain. My little grandchildren even ask me if I have a headache today. Sad.

  • 3 years ago

    Spheno palatine ganglian block. Easy outpatient or in office, noninvasive procedure. Didn’t work for me, but maybe for you?

  • kathy-phelan-delaurodelauro
    6 years ago

    Did they talk to you about the Lidocaine treatment at TJ? I had it done impatient there last April and life is soo much better. I was like you and tried everything. I see Dr Mamura there in Philly. Ask about that and mexiletine treatment. Prior to going I was in horrible cluster period! Six or more A Day!!

  • Belle
    6 years ago

    My migraines started the same way. A few migraines at age 9 then they disapeared till i turned 39. Now they are back with a vengeance. Unlike you, Botox did not help. I got my first series of shots on May 8th and as of today i have had a migraine for 25 days. My 3 doctors, neuro, primary and pain management, have finally given up on helping me. Their meds wouldn’t work completely. Sadly i get headaches every day and they vary from severity. I have been referred to a clinin in Tuscon, AZ and i am waiting for an appointment. I hope it helps.
    I feel relieved in knowing someone out there gets attacks as much as i do. Makes one feels like an outcast when others around you think you’re a hypochondriac.

    I sincerely hope you feel better soon. Stay strong.
    Isabel

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Isabel,

    I’m sorry to hear you are having such a rough time of it right now. We understand, so you are in good company.

    Migraine is a genetic neurological disease and for some of us can become chronic. Do you know if your referral is to a migraine specialist? Let me tell you why I ask. There is a big difference between doctors who say they are migraine/headache specialists and true migraine specialists. And you could think of it like this; if you need a new roof you would call an expert, a roofer, to do the work for you. You could call a general contractor, but they aren’t experts in any one area. They build houses, do roofs, paint and so on. The same holds true for doctors. Neurologists may be fine doctors, but have a hard time being experts in one area because they treat so many different conditions like MS, epilepsy and Parkinson’s. A migraine specialist is just that, THE expert who treats migraines and headaches all day, every day AND are board certified specifically in headache medicine. This is the kind of doctor that would helpful now. We have some information in these links you can read when you get a minute: https://migraine.com/blog/looking-for-a-migraine-specialist/ and http://migraine.com/blog/how-are-migraine-specialists-different/

    Hang in there and keep us posted on how you are feeling.
    Nancy

  • Michella Tetrault
    6 years ago

    Thank you for all the comments. I didn’t imagine anyone had a clue what I might be talking about. It’s so great(but bad for you) that people understand. So now get this. I had to fill out intermitent leave of absence paperwork for work, because at times I get too many migraines and have to call out since. Since we only get 8 sick days a year or we get fired, I was told to get this paperwork done and signed by my doctor. Now my job is telling me in order for me to USE my LOA paperwork, I have to tell them 24 hrs in advanced! Right, I will just let my migraines know that if they are going to show up, that they need to do it 24 hrs before I have to go to work! I pray the Botox keeps working, or I may lose my job!

  • kathy-phelan-delaurodelauro
    6 years ago

    Fill out FMLA paperwork…not loa as migraines are covered under FMLA! You do Not have to give 24 hour notice and is covered for total of 12 weeks. Mu neurologists have my paperwork flf 1 day a week just in case. Your work can not deny this, but Must state specific as Migraines not just headaches. Hope this helps!

  • barbaraschwartz
    6 years ago

    I know exactly what you’re talking about!!! My employer (a state agency) does allow me to apply for state/federal FMLA for a “chronic condition” such as migraines. However, HR needs to get a signed certification from my doctor indicating “approximately” the number of migraines I will get in any given time. During the course of the past certification period (which is 6 months), my doctor indicated 3-6 “per 6 month period”!! I get like 3-6 per month! Now HR is threatening to impose disciplinary action against me because I am abusing my migraine condition! How absurd!!

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Michella,

    Yes, it would be great if we could know the day and time of our migraine attacks! Wouldn’t that make life so much more manageable?

    I’ll be keeping my fingers crossed for you too!

  • Sonya
    6 years ago

    My migraines started at age 32. I am now almost 59 and not as bad off as you but I do struggle daily. You are the only other person who has ever mentioned the yawning. I do it too! I will have to click on that link the moderator gave for the stages of migraine. I would like to know more about the headache center at Mayo. Was that in Arizona? God Bless you. I hope this nightmare ends soon.

  • Michella Tetrault
    6 years ago

    The Mayo Migraine Center was in Scotsdale, AZ. In fact my current doctor worked with them when they were doing some of the inital botox testing. Look them up. You probably can find it under Mayo Clinic in Az… Good luck!

  • Dawn Lloyd
    6 years ago

    I hope the Botox treatments continue to work. Hang in there with the doctors. Keep experimenting with pain medication until you find something that consistently works with little or no side effects.

  • AmyBabee
    6 years ago

    Hi Pilotgirl35, I totally get you. Even as I write this, I am having an attack this moment (that time of the month), can you believe that?! I, too got my migraine at age 35. I cannot begin to imagine how streessed you must feel right now. Brutal! I feel you, sister. I dont even know what to tell you right now, than it feels good to share with people who understand how and what you are feeling. As I write, I feel good already for sharing in your pain. Hang in there, and God bless you. I have you in my prayers.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi and thank you for sharing with us.

    Yawning can be part of prodrome, the first phase of a migraine attack. Other symptoms include frequent urination, moodiness, irritability and more. Here is information on the four phases of a migraine attack: http://migraine.com/blog/what-are-the-stages-of-a-migraine-attack/.

    Do you have your records from the doctors at the Mayo who diagnosed you and do your current doctor know about that visit? It’s important to for doctors to know all our history so they can treat us properly. If you don’t have your records, I would encourage you to get them. It’s important to know what kind of migraine and/or headache disorder we have because we can then get the right treatment and learn about all we can about them.

    Changes in the barometric pressure (weather changes, planes) can trigger a migraine for some people and being a flight attendant may be adding to the mix. In this article, http://migraine.com/blog/migraine-triggers-the-power-of-weather/, about half way down the page, is information about Diamox a medication sometimes used for barometric pressure changes and migraine.

    Another important thing is if we take migraine abortive medications such as the triptans (Relpax or Imitrex) or any kind of pain medication, prescription or over-the-counter, more than two or three days a week can create a situation called medication overuse headache, or moh. This may cause a cycle of unending pain that is hard to break. When you get a minute, take a look at http://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.

    I hope this helps,
    Nancy

  • Pilotgal35 author
    6 years ago

    Thank you so much! I will get my records and then I will ask about Diamox. Botox injections are July 6th! Yea!

  • LT
    6 years ago

    Even though you got it later in your life, any time spent with chronic migraine is brutal and takes so much away from you. I can’t imagine being a flight attendant with migraine. Even just one flight leaves me having to recover for days, due to the pressure changes and other travel triggers. You are one strong woman! I hope that you continue to find things that ease the impact of migraine for you even just a little bit (and hopefully a lot). Best wishes.

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