I get them rather infrequently now. And thank God for that! It’s awful. I have yet to vomit from a migraine but abdominal migraines are a whole other beast. They hit you like a freight train. It’s such an intense pain. I can usually spot a migraine coming. But not abdominal ones. I’m fine then suddenly I’m NOT. It’s like an intense pain and severe bloating in a very specific area above the belly button. I get almost indigestion type burning pain that just takes me down. Kind of what a gallbladder attack has been described to me like. But no matter what I take medication wise nothing works but migraine medication. And I am curled up in a ball and pale and unable to walk until the rescue meds kick in. It takes days to get over really. I hate them.

I do both Vyepti and Xeomin (Botox) and there is no side effects really for me. I do the 300mg of the Vyepti infusion and it’s never given me anything. The Xeomin side effects are no wrinkles. And it does make me feel a little run down the next day. But it’s the best preventative of them all. If I had to choose one it would be the Botox one. So quick. It’s the best at stopping and lessening my migraines.

And I am also on 400mg of Topamax daily.

Same.

Absolutely yes. I was fasting and running and counting calories and the weight just poured on me!

A runny nose. I highly recommend daily allergy meds if MCAS. I am pretty sure I am MCAS and I take some now and no reaction. The first time I did the Vyepti infusions I did notice small things like instant congestion and when I bumped it up to 300mg I had an odd symptom I can’t remember. But now that I’m on daily Allegra I have had zero issues. And my random hives have almost completely stopped.

I have had to quit positions as well. But now I do multiple types of preventatives to help ease the severity of my attacks so I can work through most migraines and take rescue meds to prevent more severe symptoms when things start getting bad. It’s not perfect and working part time seems to be ideal for me.

I have an 18 month with a notes and added goals pages. It fits into the folio fine. I even keep a few pages of stickers in my planner as well.

I don’t even have to touch my face to have a migraine give me a black eye.

I’m so sorry for the misery. I hope your brain turns off and on again real soon and resets to a better factory setting without a nasty migraine!

Fellow hemiplegic migraine sufferer. I do the infusion(Vyepti) and Botox (Xeomin) for mine. I respond better that way. Plus the infusion is once every 3 months. It is still a cgrp. But it lasts longer and less needles. I did Amovig for a bit but it just wasn’t worth it overall. I had too many migraines for it to be beneficial. But there were no side effects to it. So it’s just a shot. Not a big deal.

My middle child was like that. Barely growing. Miserable. She had silent reflux. That led to chronic terrible ear infections. It was awful. Fight harder with doctors even though growth is ok and no spit up that reflux is the culprit. I waited until almost 2 and thinking she had asthma. Poor little girl had to have chronic breathing treatments, which were awful. All of that went away with 6 months of reflux meds. Also her 2nd set of tubes and adenoids removed. But it’s too soon for that to be discovered.

But the first sign was milk intolerant and EBF all the time and crying non stop. No sleeping. No putting her down. She also started snoring around 4 months or so.

I am “allergic” to Botox. I have to take Xeomin instead. I also do infusions of Vyepti at max dosage. And daily preventatives of Topamax. And still I need rescue meds. The ONLY thing that takes the edge off is Fiorcet. Getting that prescribed is like an act of God for some reason. I’m lucky to get 10 doses for 6 months. I have easily 20+ migraine days a month. I take Aleeve on days I can’t seem to manage.

Because I have hemiplegic migraines all triptans are a no go. Every CGRP but the infusion is useless. I feel your pain on this issue. I take all the supplements I can think of, no help but I still I try.

My middle child was not just a daddy’s girl. She was anti-mommy. She practically hated me. And I exclusively breastfed her for almost 2 years and that little baby would claw not cuddle me. She refused a bottle. I solo parented more than I didn’t. And I heard “NO mommy. I don’t like you” more than “I love you” for the first like 5-7years.

She is now 17 and she BRAGS to all her friends that “I love my mommy, she is my best friend”. And yes, she still calls me mommy sometimes. Yes she can still be a bratty teen who gives me all the drama. But we talk. We love each other. And she comes to me for all her problems. I try to instill that I am the mother, not the friend. But I am her source of endless love. And she knows it.

Give it time. Love her endlessly. She will stomp on your heart no matter what. That is what kids do. Raising kids is like a roller coaster. It’s ups and downs but what a ride. It won’t be like this forever. But they will remember you loving them forever.

I tell people I only have migraines on days that end in Y.

It’s been so so so long with migraines so frequently I can barely remember the person I used to be. My spouse just told me last night that I play the victim so often it gets annoying. Ugh. It’s hard. It’s so hard. People just don’t get it. I’m sure that to someone who doesn’t have chronic pain it does seem like I’m crying wolf or playing victim. Like how is it possible that yet again I feel awful? Day after day, week after week, turns into years. And it only gets worse. I’m just not well all the time. Will I ever be good? Or do I just love to talk about how I feel so sick? I honestly don’t know anymore.

Me too. I did a D&C and an ablation together. It barely did anything for YEARS. Then when it finally started to lessen it was just perimenopause. Thanks scumbag body. Which also gave me endometriosis that went through my colon. It’s awful.

Are you a female? Do you experience this bleeding constantly or more so a certain times/ is it cyclical?

I had almost 1.5 years of bleeding from hemorrhoids and they progressively got worse and it turns out I developed endometriosis that went to my colon. Because of my hEDS they will not operate on me. So they are treating me with medication for the endometriosis and it has stopped my bleeding completely. It took a bit to stop but it finally corrected itself.

Run. Literally. Grab your smartphone and download the app couch to 5k and run. It was the best decision of my life to become a runner. And when I started I was so unbelievably out of shape. I had to get a cardiologist to approve me to see if it was safe, that’s how out of shape. I “ran” like how most people walked briskly. But I did it. I had 3 kids under the age of 5. And I left them at home with a grumpy husband or I was going to lose my mind. I needed to find me. And I did. Out of shape Creativelynumb became a somewhat less distraught blob on the streets huffing and puffing along 3 days a week, walking and running in 2-3 min intervals. Then one day I ran 20 mins straight. I cried so hard on the sidewalk in some random neighborhood. I was so damn proud of myself. I was finding strength and pride and determination in myself. In some crazy little app that just beeped in my ear to walk and run. But it was something I did by myself. Without my kids. Without my husband. And I did that 5k. And I kept going. To a 10k and a half marathon. And I kept doing it over and over. Because I could. And because I could run those distances I had the nerve to join a running group on the weekend. And go to the gym as well. Those things were my biggest fears of all. Because I felt like I didn’t belong. But I did. And running made that possible. You don’t need much. Fancy shoes aren’t necessary. Walmart or Target clothes work just as well as high end. Just drink water. Eat something before going on a long run. And your mind can do the rest. It’s about YOU and no one else. They say some people get a “runners high” I never did. I was haggard after the hard runs. But energy begets energy. And pride in yourself so a long way. The running community is nice. So supportive and helpful to everyone I have found.

I miss it so much. Sadly my heart is not what it used to be. And back to the cardiologist I go, tomorrow in fact. I don’t know if I can ever run again. But in my mind and in my soul I do. It’s a great hobby.

God do I sound HORRIBLE. I’m so sorry. But if you can’t tell it’s well just what it is… surviving not thriving. Is it healthy? No. What a joy you have had. Maybe that’s only once. Or maybe you are just a wonderful person and you will be like that again for someone else. Because you are just that friendly and amazing. Life isn’t just made up of past memories. It’s current ones too. Don’t be afraid to make new connections as well. It’s never too late to make friends.

I just moved to a new place. That’s why I have no friends. I don’t know anyone. I am giving it time. That’s ok. I have it now.

I have one friend I talk to once every few years. More so if big life stuff happens. But yeah that’s it. I don’t have any friends IRL around me. No casual friends. I can and have gone months without speaking to my mother. My brother has gone no contact from me for over 5 years. But for a long time I moved overseas so people had excuses. But I have been back 4 years now. But life just got in the way.

How do you survive without friends? You get up each morning and make your coffee, get the kids to where they need to be, and then you do the things. Before you know it the days pass and life goes on. You kinda get a solo hobby like reading or knitting or whatever. Days turn to weeks, weeks to months. Life flies right by you. Maybe you get a dog to keep you busy. Next thing you know it’s been so long before you thought of the idea of a “girls night” or whatever people do. Time marches on anyway. There is always some holiday to focus on or chore around the house to do. And the kids always need something from you no matter how old they are. So it’s not like there is a lack of stuff to do.

Not any Jesuit I know. I must really be in the minority and I know I will get a lot of hate for this, but most of the Jesuits I have known, and this is mainly European based, so maybe that’s why… I have never seen anything like this. Or heard preaching of anything close to this. My priest was a Jesuit professor and this? No. Never.

He was kind and loving and funny. He spoke of the gospel and just so open to living like Christ. Being a disciple and loving God. But nothing political. Nothing but preaching the word of God. And all the other Jesuits around. They were the same. Open to other cultures sure. But focusing on coming together to worship God. Nothing more. It breaks my heart because when I think Jesuits I think preaching and working for the Kingdom of God. I see these photos and hear statements and I just feel disbelief.

Topamax is a very useful medication. It has really made such a difference in my life. If you really think you are having hemiplegic migraines then you should do what doctors suggest as preventative treatments. Not everyone gets the worst case side effects from medications. Hemiplegic migraines are awful and can lead to very serious issues and even a coma. I have been coded for a stroke with my first hemiplegic migraine and spent time in the ICU over it. I have narrowly avoided week stays in the hospital over a “simple migraine”.

I take 400mg of Topamax— max dosage— and have done so for years. It’s not the worst thing ever. It’s not ideal but life is better with it than without. There are many other preventative treatments out there. And I am on 3 others as well. It’s a dance and a delicate balance trying to get things just right.

Again you are in control of your body and you should never do anything you don’t like. But things aren’t as scary as they seem. And depending on how bad your attack severity and frequency is, you might find options run out quick of what works and what doesn’t. Topamax is a go to option for a reason. It works a lot of the time. For a lot of people. When things don’t work then you have to get creative. And things don’t work as often. I have been down a long long road. I have tried a lot of things. I won’t turn down anything because I like living a normal life. Anything that gives me a chance at that I leap for it.

It’s the “Terrible Twos” the “Trying Threes” and the “Fucking Fours”.

Then it’s rather ok cause they go to school and the worst is the afterschool activities and whatever bull the school makes you do.

Then it’s the dumpster fire that is 11 year old. Something about that age is hot mess express. They won’t shower. They hate the world. They hate you. And if you have an ADHD kid then it might be delayed a year or three. So don’t say whew 6th grade was easy. It’s coming. Just wait.

Or at least that was my experience as a mom of 3 kids. All are now 20, 17, and 15. Teenagers aren’t that bad at all. You know what is the most terrifying part of upper teens? The huge increase in your car insurance. No one really talks about that one. But dear lord! OUCH!

I have lived in just about every climate. I can say that the upper elevation of the mountains does LESS damage to me than sea level or desert. I have lived on both coasts in the USA. The coast in the Middle East. Sub Saharan desert. And mountains in the Julian Alps and Big Horns in the USA. Hands down I am more manageable (which for me is laughable term) in the mountains. I am out of control in costal. And yes this also applies to SoCal coastal weather. I was the worst of all there. Elevation is not that big of a deal. But pressure snaps still get me. So it’s not always fun times in the mountains. But overall life is good. Elevation and cold is ideal for my brain. Heat and sandstorms take me out.

I can tell you that accutane did crazy things to me too. It was a rough time for me as well. But I got through it and you can too! I lived at the gym and the church. But I’m not going to lie, it was ROUGH. I thought it was just life being insanely hard for me but I had all the symptoms you had and more. Panic attacks. Just so much. It took months maybe a year or more. I did so many back to back 54 day novenas. It took me a long time to get things right. But honestly I was not right. I was going through so much stress and upheaval in my life.

My advice? Silence is good. Embrace the silence. That is where God dwells. Remember Elijah? Not the storm. Not the eathquake. It was when the silence came that he knew God was there. It’s ok. You are never alone. Go and sit in adoration if you can. I also love and found so so so much joy and peace from consecrating myself to Mary and Joseph. Life changes after that 33 day consecration to Mother Mary. And doing a 30 day consecration to St. Jospeh is something else. He guides and protects like no other. Having that holy family is like no other.

I have a lot of health problems. I have a hard time asking to be healed. I’m so glad you ask for it. But you know what, as a person who lives daily with some scary stuff, and as in the book of Daniel (paraphrasing) and if not God is still good.

Rock bottom isn’t so bad. Because Jesus is the corner stone. There will always be people worse off than you. And people who have it easier. This is your path. And I will walk it with you. And hold your hand. You are not making up your symptoms. You can get better. It may take time. I’m so sorry that you have suffered this long.

My middle child at best might have had SPD. My youngest has ADHD and generalized anxiety disorder. Both kids were an absolute HANDFUL. And that’s putting it nicely. They screamed and clawed my face while buckling them in the car seat. Ran away from me in public spaces like I stole them. Repeated said things like “I hate you” only when I felt my absolute lowest. It’s like they had a radar for mischief and terror. And they were pros at it.

I just mustered on at doing my best. Going to the zoo and running my errands and living life — most of the time as a solo parent. And I just told myself my place in life is to be “That mom”. The mom you see in the store struggling with crazy, irate kids and it makes you look at your own kids and go— oh thankgoodness I’m not THAT MOM”. I was there in the trenches serving a purpose. Making others feel good about their place in life. Was it rough? HELL YEA. Did it last forever? No. Are my kids still awful? No. They are teenagers now and they are good people. But whew was it touch and go for a few years.

It’s not fun when you are stuck in the trenches. But life sucks for everyone at some point in time or another. Sometimes it always sucks. Just depends on how you embrace life and those around you. But times are just hard sometimes. Don’t let yourself think it will be like this forever. It won’t. Soon the hard stuff will be different. And that’s ok. People always judge. You can’t stop that. Maybe give them a good show!

I ran a half marathon IN THE RAIN. Not just in the rain, tornado watch at one point. Lightning flashes. Maybe hail at one point. It was awful. But I trained so hard. I was doing it. And I was the crazy girl who did this in those five finger shoes. So “barefoot” too. This was 2011 or something. I don’t know if it was because of the weather or crazy bad planning. But there was only one potty break on the loop of the race. The 4.5/9 mile mark. I was good at the 4.5 mile mark. 9 was questionable. But I pushed through. That was a mistake. I had to go BAD by 10.5. Mile 11 was misery. I barely finished at 13.1. When I met my husband and 3 kids at the end he was FUMING. He was pissed at keeping the kids amused for over 2 hours in the rain. He was “traumatized” at seeing a dude run across the finish line bleeding from his nipples. He wanted to leave IMMEDIATELY as I crossed the finish line. Like grab the medal and get in the car and asap. No walking to cool down. Nothing. I could not even use the bathroom. I insisted on the bathroom. So he took the kids to the car while I was in the bathroom. I had zero clue where he even parked. He didn’t even tell me. He left. Everyone at the race was so sweet congratulating me and all that. He just abandoned me and I had to hunt him down to get a ride home. I kinda feel for this woman runner. At least he stayed at the end of the race. Ugh.