At Wits End!

By lifecoachjane

2 min read

I was diagnosed with chronic migraine in 2011. 49 years old at the time, trained as a life coach and building my business, and working part time as a cashier at a grocery store. I smacked the back of my head at work (and saw stars) in October 2010 but didn't go to the clinic or file a report. Shortly there after, the migraines started. A couple weeks had actually passed so I didn't connect the two together.

They started out random, and I couldn't figure out why every time I went to work, I felt dizzy, nauseas`, almost like I was drunk, then came the migraine. After trying many times to get thru my shifts with no avail, I finally took a medical leave hoping to get things straightened out so I get back to living my very social life.

I exhausted the medical leave and still couldn't return, so my last day of employment was in April 2011. Thankfully I'd stashed enough cash aside to get me through the end of my lease in August. Well, I also sold everything I owned in order to pay those last few months of bills.

I moved out of my apartment and moved in with my mom, thinking at the time it would only be for a short while until I got my health straightened around... Here I am. It's August 2015. 4 years have passed and the migraines are not only still with me. They're worse.

Been seeing a neurologist for years. I've tried various medications, diets, natural remedies, gels, and so much more. Had the occipital nerve blocks, had the first Botox at the beginning of June (it hasn't helped one iota). About 3 weeks prior to starting Botox, the migraines got to be more and more often. During the month of May, I had 10 days that were kinda sorta ok. During June, I had 2. Now, in the month of July, I didn't have any. I have a migraine at some point every single day.

I guess I should feel grateful that I usually do have some reprieve in the mornings, but it really isn't much of a consolation to me. I've had it. I'm at wits end! I'm calling the neurologist on Monday morning for an appointment. I don't know what I expect her to do. I don't know what she can do. All I do know is that I have had it. This is no way to live. I'm now 53 years old and have no life. I can't work. (Been trying to get federal and state disability and that's another big treat!)

I don't know what to do. Can someone please just send me some supportive words? Something? Thank you for listening. My rant is over.

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deborahvan-der-harst Member
Hi Lifecoach Jane, I can identify with what you are going through. I started getting chronic migraines at age 46, 6 years ago. I was shocked that I was getting them during the peri menopausal phase of my life. I thought that people got migraines at an early age, and stopped having migraines once they hit menopause. I've been in menopause for almost 2 years, so that won't be the cure. It's unusual to begin getting migraines at our age. It's very easy to remember life before migraines. I mourn for those days when I could workout, rollerblade, take photos at the Botanical Gardens. Now I sometimes become short of breath, tire quickly and have low tolerance for extreme heat and cold. Like a lot of people I thought this migraine condition was temporary, and that there were plenty of effective medications that would stop my migraines in their tracks. My first neurologist wasn't able to relieve my pain, so I decided to see a headache specialist at the Diamond Headache Clinic in Chicago. I highly recommend a headache specialist. Not all neurologists know how to treat migraines. He prescribed 2 daily prophylactic meds (Topamax aka Dopamax) and Gralise, one abortive med (Maxalt) and 10 tabs a month of Norco. He also gave me one nerve block injection near the Greater Occipital Nerve. Shortly after that I enjoyed 5 pain free weeks. I thought I was back to normal, but the migraines returned during the 6th week. The Maxalt worked, but I could take it only 2 days a week. I'd call my doctor asking for something else that might work. The only options were muscle relaxers and Thorazine. The muscle relaxers made the migraines much worse and increased the painful throbbing, so that it hurt to move my head even slightly. The Thorazine had life threatening interactions with my other meds. I accused the PA of trying to kill me, but the doctor had prescribed it. My doctor then recommended Botox since I had about 21 migraines per month lasting days with no letup. I couldn't wait to get the injections. After 4 or 5 rounds of injections I realized that I was beginning to have fewer migraines with shorter duration and less pain. Medication is trial and error when looking for something that works. Of course, some meds work for some, but not for others. I had a setback in March when I began a 5 or 6 week intractable migraine phase. I was sent to the admitting hospital for Diamond Headache Clinic called Presence St. Joseph Hospital for 3 days of a DHE cocktail I.V., given every 8 hours. After 3 days, I was still in pain so I stayed in the hospital for 3 more days of more rounds of the DHE I.V. Fortunately, the side effects were much less severe, and I started to feel better. I was pain free when I was discharged on the 7th day. A WORD OF WARNING ABOUT PICC LINE INSERTION when there are no more good veins left for an I.V. Port. PICC Lines can cause blood clots along the line that is inserted in a deep vein in the arm. The odds are slim, but if you are a woman age 50 and over, are on hormonal replacement therapy or have other risk factors, there is a greater chance of developing a DVT in the arm. I was one of the few to develop a DVT along the PICC Line in my arm. If you are at risk, ask about other options as DVTs are potentially life threatening. The migraines are becoming less frequent again since I had another round of Botox injections in June. I also have Migranal nasal spray to use 24 hours after my last dose of Maxalt if I need it. It is very effective and works quickly. However, that drug has a two day a week limit as well. The Valproic Acid and Orphenadrine Citrate are also abortives, but they have no effect on my migraine pain. So far, the Maxalt and Migranal have been enough. The best advice is to find a headache specialist who is willing to try different treatments until something works for you. My doctor has never given up on me, and that means everything. Best of luck to you!
deborahvan-der-harst Member
Hi Lifecoach Jane, There are a lot of Patient Advocates on this site who offer information for people having difficulty with treatment, and knowing when and where to find doctors. I have found a lot of good posts from Terri Roberts, Kerrie and Migraine Girl. There are several more knowledgeable Advocates in addition to the three named above. If you click on community, there are also migraine experts who give important and useful information. All of us are here to offer support, encouragement and hope. The post below is a link from Terri Roberts that you might be able to use. <a href='https://migraine.com/blog/is-it-time-for-a-new-migraine-doctor' target='_blank'>http://migraine.com/blog/is-it-time-for-a-new-migraine-doctor/</a> Let me know if there is anything I can help you with. I worked my last job in 2006, and feel like a burden to my husband sometimes. We were married for less than two years before my migraines became chronic. I am lucky, though, because he is my rock. Do you find it difficult to get the support you need from people outside the family? I wonder if there are support groups that meet when some members don't have migraines?