Rough few days

Hemiplegic migraine, POTS issues

Category:

Education

Tags:

• pots
• dysautonomia
• hemiplegic migraine

[FlyinHyy]

Did you have a blood test to diagnose this? hugs hope your'e doing better!

[jones5pc]

@FlyinHyy I didnt have a blood test. I had multiple echoes done on my neck and multiple EEG's. once everything else that could possibly be ruled out was, I was diagnosed with Hemiplegic Migraines

[lnm00996]

I'm so glad 2 find people vlogging about their hemiplegic migraines. You & 87butterflykisses87 (another HM vlogger) have really made my week. I hope you guys continue vlogging. I can understand a lot of what you're going through. I have HMs as well as other chronic ailments, though POTS really sounds like something else! I try my best 2 remain positive since these migraines are really debilitating physically & emotionally. Its difficult but I guess we can only keep striving for better days.

[jones5pc]

@lnm00996 Though HM can be rough there are some things other than medicationss that might work to prevent them. I have to be careful about which pillow on my bed i use at night. The wrong one makes me wake up with a hemiplegic migraine. certain foods, like onions or foods containing MSG can cause migraines. Every one is different so you have to figure out what triggers them. Some of mine arent triggered by anything but avoiding things that can cause them reduces the frequency

[Wivanunu]

I hear your pain and stress!! I've had these since I was about 3 years old and I'm turning 39 tomorrow. These ruin your life. That dang nausea.....because your digestive system just shuts down! Do you have a doc that helps you in any way? I've seen so many docs.

[jones5pc]

@Wivanunu I was going to Dr. Jon Peters in northern virginia. He is great. . He diagnosed me and got me on zonisamide which helps a lot. The nausea from the migraines has been especially bad lately. I've been watching what I eat to help control the nausea

[Camalulu47]

I have them too they're so scary :( I'm 14 btw ^___^

[Rayray96241]

Hiya My dad sufferers from hemiplegic migrains, his symptoms are exactly like yours, he's trying to find people who suffers from the same illness as him as it's so rare to find anyone at all. We live in the UK and there's only been a dozen cases in the UK according to the doctor. He's not on proper medicine for Hemiplegic Migrains, just on trial and error meds for now. I hope your feeling better :)

[FlyinHyy]

@jones5pc oh ok!! I'm waiting on my gene testing now. God bless! you're so cute

[babyblueangel1980]

I so understand your pain. I also have HMs. I am 30. When I was 28 I had an actual stroke due to a blood disorder that had not been diagnosed until the stroke. My mama and my sister also have HMs. I will be praying for you. We just have to keep going.