Spotlight on Migraine - Episode 2 - Katie Golden: Living with Migraine Disease

[@LizzieDeanMakes]

Thanks for making this video Katie - I have chronic acephalgic vestibular migraine - 24/7 365 ebbing and flowing of every kind of aura. It has taken a long time for me to accept that this is chronic and it isn’t going to go away. We are trying new meds with my neurologist trying to get it under control so that I can continue working - I am a coder and I write software for libraries. I really resonated with so much of what you said! I am still “on the couch” - I used to be a gymnast and run 10Ks every weekend - and now I can’t even walk up and down stairs without someone holding on to me - the physical fitness I have lost is so evident. It is humiliating having to put my hand up at work and ask for someone to assist me downstairs so that I can go to the toilet. When I tell people I have migraine they always say “oh I get migraine too” or “I know someone with that” and when you ask them about it it turns out they have self diagnosed their occasional headache as migraine and are now imagining that what you have is the same thing - when it is so different. The stigma is based on people trying to equate it to something they understand - it is based in empathy, but it is really impossible to understand a chronic condition if you do not have one or know someone very closely who has one. Thanks for being an advocate for greater understanding xx

[@annaswanson5903]

I have really bad migraines and haven't been able to go back to work in an office. It is humiliating when you're not able to do a lot of things because of chronic illness, but I don't have a choice so I'm just trying to live my best life. Being honest with people about where I am at in life has been the best thing, and I have actually found a most of the people I know have been really kind and understanding about it

[@tavy311]

Thank you for sharing! I experience migraine attacks as well & they're HARD! I've been in bed all week. I haven't worked in almost a year and I had to discontinue going to college, in which I've incurred fees...it's truly depressing when there's no income & when no one REALLY understand or try to understand my experience. At times, I just wanna be alone because it hurts to talk, breathe, just to live a simple life is hard. I'm at my wit's end...I'm going to do all I can to change my diet, exercise (as much as I can)...I'm claiming relief & healing for us all. 💞💞💞💞

[@annaswanson5903]

I'm in the same boat as you. I haven't been able to work because I had a terrible flurry of daily migraines, but I fortunately have been able to decrease the frequency of how many I get and how bad they are

[@amytrumbull156]

There's a great book that's helped me quite a bit titled Heal Your Headache by Dr David Bucholz. The diet restrictions are extensive but absolutely essential for me personally. I'm now on a keto diet and have lost weight as a benefit. Almost all of the potential trigger foods are bad for me and some foods that weren't listed there have turned out to be triggers for me. Eggs, for example and coconut. I'm nearly caffeine free, which took a looong time for me to taper down but absolutely worth it. If you justify google migraine elimination diet you can find a couple of really thorough, good lists. I know it's hard to radically change your diet but for a migraneur, absolutely essential. My pain level is down to a 1-3 for the last few days because I gave up eggs in addition to all the other foods I avoid. Who knew! Best wishes friend!

[@jessicawolfe5861]

Do what you can to find a good balance. You will figure out what recovery looks like for you. I’m not able to work full time or really even part time so I do what I can when I’m having a functioning day, and taking time when I need it without judgment.

[@jessicatomlinson1629]

I'm praying for you sister! I have been walking through this for 6 years more intensely and I have found my only hope is in Jesus! He will work all for our good and for his glory and one day we will exchange this earthly body for our heavenly one! I just read this again this morning in 1 corinthians 15:40-44

[@Basilpeachi]

It's hard for me to even walk and I hate it. My dad can't afford the help I need and my migraine hasn't gone away since last year. It's such a lonely feeling knowing that no matter how hard I try, my best isn't good enough and I can't control the pain. I wish I had a simple headache cause at least it would go away. Thankyou. I really needed to hear this.

[@annaswanson5903]

I'm so sorry to hear this, sending all the hugs and strength. I'm a migraine sufferer too and it is so hard

[@gitanshthefriend]

Thanks for sharing...I am from India... sorry for your pain but feels good that there are people apart from your self who truly understand your pain....I have chronic migraine for quite a while now and everyday feels like hell...it's like you want to go out and be free but no matter what you can't find the way out..and it's frustrating... it's very hard to explain to others what it feels like especially to someone who don't have any experience...I don't even remember if in my entire life was there anyone who didn't said to me just rest and it will go away but no one understands that how hard it is to even rest and wait for that pain to even get reduced a little...

[@aminaasif5770]

i love your determination ! you are my inspiration, such a a strong lady you are

[@bunzer.of.wunzerton2235]

She's so endearing.

[@annaswanson5903]

ideed

[@ashtron5595]

My last visit with my previous primary I couldn't stop crying because she said it was just anxiety when I litterelly needed a walker to get around my house because my stomach and head hurt so much. I was so dizzy I needed constantly have support. It really broke my faith that anyone would believe me.

[@annaswanson5903]

Thank you so much for sharing! I get migraines too and I made a video about some of the products that I have used, just in case anyone is interested ❤️🌸

[@healthsmart4661]

Hi Katie.You Rock. Someday and it will be soon, you would be well. I am a Neurologist in India. The usual practice is to give a cocktail of abortives to take care of nausea , anxiety, depression, sleep disorder , and IBS symptoms if any.And these have to be taken for 2 yrs. I have found just 1 abortive is not enough for the myriad symptoms of the patient. In US I guess a Headache specialist will not look into GI Psychiatric, or other systems involved in Chronic Migraine. Since we do , I guess patients are better off.

[@katb8552]

Marry that man! My husband is the exact same way!

[@jessicawolfe5861]

Ah another person who has migraines 24/7. Good to know. The only help has been with Botox injections and that’s not always a given. Plus it takes them from 24/7 to 4 days a week. So not at all normal.