Does MCTD cause migraines Rhematologist said it causes them but not as bad...

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  • My daughter has had a daily migraine for 9 years. It started 3 days after getting her wisdom teeth pulled. The diagnosis was "new daily persistent headache". She's been hospitalized 3 times, tried botox, nerve blocks, even stem cell therapy with her own stem cells, one time she was hospitalized they put lidocaine through a pic line to try and numb the headache pain. She also metabolizes meds too quickly so nothing would have the chance to help her. We found a wonderful headache specialist in Manhattan. It's been a lot of up and down, she still has the headache but it's pretty low normally now although she freaks out every time it goes up. She is on a boatload of meds and takes Compazine as a rescue unless it's really bad then she will take a dilaudid, it's the only narcotic that works on her. I don't know if she has AI, we'll actually discuss it with the neuro at the next visit. She got it when she was a freshman in college, still managed to graduate on time with honors and went to vet school which she graduated from last year. She is finishing up an internship at the ASPCA and just landed her dream job as an ER Vet at an ER/Specialty Hospital. I also experience migraines (but not daily). Before this she never had a headache. Sending spoons and prayers for to find answers. Nikki went to several neuros before we found this one and was also a patient of Jefferson Headache Center which is supposed to be one of the 3 top headache centers of the country. Please don't give up!

  • I have almost daily migraines have for prob last 6 years I now use a zomig spray which really helps

  • I get really bad ones about every 3 weeks

  • Muscle and joint pain, the worse in hips, neck, shoulders, but truly all over and it comes and goes daily. No migraines, but I have a friend who found relief in Botox injections. I'd also try essential oils.

  • Thanks, migraines are new to me and is so much worse then MCTD. During a migraine, I'm like a vegetable, I can't even think.

  • Were you DX wig MCTD first?

  • If it is that consistent is it hormonal? There is medicine for hormonal migraines.

  • I tried many treatments for migraines including Botox and essential oils.

    I feel your pain. I useto cry with MCTD but migraines are so much worse for me because MCTD doesn't last that long compared to migraine though winter months is rough.

    Have you tried an electric blanket for MCTD? It really helps me.

  • Change your diet to a more natural diet and I promise you will be amazed! I had all them symptoms with literally no relief daily. Felt like giving up but then I tried the paleo diet and after 30 days my doc redid my bloodwrk and my sed rate went down to a 4! My heels finally quit hurting! I feel like a new person.

  • That is awesome, I live with heel pain for so many years. I eat healthy. I grew up on Atkin diet, if I ate carbs it was gluten free, and a paleo diet but when I tried to cut meat, I started to eat lots of carbs and I blew up.

  • Thank you for all your support, I'm just trying to figure out if MCTD is a symptom of migraines.

  • I was in such pain, especially my heels, hip, legs and shoulder upper back that I had to go down to 2 days a week at wrk. I'm only 46 and could barely shower. I refuse all medicines from doctors. I've went thru a couple rheumatologist and family doctors because they say I refuse help but the reality is medicines are just a bandaid not a cure. And medicines can kill you faster. So I tried gluten free first but seed to get worse which I can't explain, lol. Then bought me vitamin D (2000 mg) and a few others and started the paleo diet. A friend with lupus said it is a miracle and saved her life. So I was desperate and asked my dr to do bloodwork before and after...well the first 2 weeks were rough! Felt horrible and my headaches were bad! But she told me not to quit that it was my body detoxing from the sugar and chemicals. Well I'm glad I didn't because week 3 I was started to feel good and week 4 I was walking like a spring chicken! I lost 20 lbs the first 30 days ( that was a bonus) it's been 6 months and I've lost 40 lbs and I eat more than I did before! My sed rate has stayed at 4.

  • i will have to ask my dr. thank you for the info, he wants me to see a neurologist but i haven't been able to afford to, meanwhile i've been tracking them with an app

  • I think so i have about 3 to 4 a month.

  • Good it is always good to track or do journaling. Some family doctors prescribe migraine medicine, preventative and abortive.

    Not all neurologists are headache specialist. Some doctors are headache specialist.

    You just have to find a good doctor that is patient to RX a medicine for you that works and finding that medicine is hard.

  • Thanks!

  • Lucky you. I would be happy to get it down to 15 a month.

  • No I have had migraines all my life just frequency changed

  • Sounds like the same symptoms I'm plagued by daily. The pain in my heels & feet is absolutely intolerable on top of the constant joint, bone, & muscle pain. The migraine that feels like I drank a liter of gin for dinner the night before is way overrated as well.

  • I have recently used Arnica oil and Arnica gel for joint aches. Rub on the problem areas. Seems to work very well and stops the pain for hours. You can find it on Amazon. Yes, electric blanket helps but I live in the Deep South, so only use in the winter! I find weighted blankets help too. Hope you find relief. And do try paleo diet, it provides relief, too.

  • You may want to try the Autoimmune Protocol (AIP) , a stringent diet that eliminates foods that could be triggering autoimmune response. It helped when I was in a bad way, but its difficult to maintain (for me). I avoid gluten, but find it hard to eliminate rice, corn, oats etc. I avoid food additives, preservatives, processed foods etc. and strive to eat organic. I minimize dairy and sugar. I know I need to lose the grains.....working up to it.