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I'm new to this app. I have dysautonomia, pots, migraine and cerebral vascularitus. Anybody else hav

Jan 01, 2016 9:42 PM

Dysautonomia cerebral vascularitus migraine pots

Jan 02, 2016 2:28 PM

Welcome to our community Londen1910jc! I've had migraines since 1995 following a myelogram & cervical spinal fusions. I've only had 2 episodes of pots in the last five years, and although my doc said the term he didn't assign the dx. I've developed cervicogenic headaches over the last 5 years. I have fibro, sjogrens, hypothyroidism, DDD, TMJD, OA, and others. In abbreviated terms, I took a LOA from work in 2010, expecting if go back in 6 months, but one thing after another and my health decreased like a runaway train. I had to start using a cane, walker, and use an electric cart in large stores. My PCP said I'll not be able to return to work but if already come to that conclusion. I have Midrin for my migraines. I have to be careful about taking any decongestant meds because they drop my bp quickly. I now there are others on here with the other dx you have. I'm sure you'll get a lot more members comments with the holidays coming to an end. (((Hugs))) & prayers! 😷🙏🌼

Jan 02, 2016 3:50 PM

Welcome London! My daughter and I both have Chronic Migraines, I have several hurniated and or bulging disc in my back. I also have arthritic pains in my shoulders and ankles, and when I walk it feels like I have thousands of knives stabbing my feet. Here you will find support and non judgmental people.

Flappys, that is what they have my daughter on for her migraines, the midrin. Does it work well for you?

Jan 02, 2016 11:31 PM

I have Ehlers-Danlos Syndrome, POTS, a chiari malformation and a craniocervical instability! I'm also a migraine sufferer!

Jan 03, 2016 8:06 PM

Moparmom, I've used it since 1995, except when I was on trial for a different one then went back to it. It works very well for me. But neither of my daughters can use it. I don't remember what they take. 😷🙏🌼

Jan 03, 2016 8:40 PM

Januarylove I found out I had Chiari Malformation after a car accident on 2009. I'm here for back surgeries and chronic pain and head aches that they say steely likely caused by Chiari but by something called occipital neuralgia which is a nerve in the back of my neck that goes up into my head messes with my vision. I was nervous about the chiari at first but what can you do Dr. tells you over and over no need to worry about symptoms from it right now all you can do is listen. I am seeing a new neurologist I've seen him once already but at the end of January he is doing nerve testing on quite a few areas. I'll guess I'll find out. The headaches are so bad it's only lessened by trip to the ER where i end up with an injection in the back of my skull, dosages of steroids and high dose anti-inflammatories, no home medications work. They stink massively.

Jan 03, 2016 10:50 PM

Londen, welcome! This group has been a blessing for me and I'm sure they will be for you!


Flappys, what is midrin? How often/much do you take? I'm on topomax daily, Cambia when it's excruciating and have tried botox.
When I see my rheumatologist I'm going to talk to him about the gabapentin for the fibro, I don't feel the savella is working anymore.

Jan 04, 2016 11:27 AM

Anniesgt, Midrin is a mixed medication from acetaminophen, caffeine, & Dichloralp... Whatever that stands for. There's no dose level on my bottle, I yes because each ingredient had it's own level. But I take 1-2 capsules every 4-6 hours as needed.

I was having daily migraines triggered by my cervicogenic headaches four years ago, which were debilitating. I went through two rounds of cervical ESI's (epidural steroid injx), three injections one month apart, over a two year period. Now it's easier to control both types of headaches, though I need injx for other neuropathy symptoms. You can find out more about Midrin on the www.drugs.com website. I hope this is helpful. 😷🙏🌼

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