Dysautonomia

Hey guys. I’ve had chronic pain headaches and migraines since I can remember alongside a huge array of other neurological symptoms (I think my doc said it’s dysautonomia for those?) such as numbness/tingling and brain fog and temp disregulation and fatigue. All of it super bad.

My neurologist wants me to try out topiramate for migraines and I’m a bit scared to try it because of all the horror stories online. Does anyone here have any good experiences? Are the side effects worth it? From what I have heard a lot of them, I already struggle with pretty bad and don’t want them to get worse… Kidney stones and glaucoma also terrify me.

#Headache #Migraine

Hi, my name is Lily. I'm here because I have several rare chronic illnesses plus some not so rare ones. Two that are the primary behind a lot of secondary are Autoimmune Autonomic Ganglionopathy and Autoimmune Gastrointestinal Dysmotility. My mom also lives with myasthenia gravis.

#MightyTogether #Migraine #AutismSpectrumDisorder #ADHD #Dysautonomia #AutoimmuneAutonomicGanglionopathy #Gastroparesis #EhlersDanlosSyndrome #deltagranulestoragepool #POTS #PolycysticOvarySyndrome #Scoliosis #accomodationparesis #MastCellActivationDisorder #longcovid

To anyone who would like to help; my name is Mimi and I'm looking for a new cardiologist/neurologist. Preferably someone in the southeast. My current cardiologist is ignorant of my words and only gives me medication to "manage". Looking for someone who will value my opinion as the patient, and do testing if necessary or preferred. I've had Dysautonomia since I was 7, and POTS since I was 13, along with PAC's. #Dysautonomia #POTS #ChronicIllness #PosturalOrthostaticTachycardiaSyndrome

Hi! My name is TransientJellyfish6. I'm here because I have dysautonomia along with multiple heart issues. I was diagnosed when I was 7, making my case rare.#Dysautonomia

Hi, my name is ForgottenWanderer. I'm here because I am not actually sure what is wrong with me. I've been dealing with doctors for about a year and a half now, and they still don't have an actual diagnosis. I know that if I eat certain foods, I end up with a racing heart, shortness of breath, brain fog, and seborrheic dermatitis. I'm just trying to find some people with similar issues.

#MightyTogether #Anxiety #Depression #OCD #Dysautonomia

Hi, my name is Dingo67499. I'm here because

#MightyTogether #Dysautonomia

Hi, my name is poohtraybuon. Both my adult children and I have

#MightyTogether #Anxiety #Fibromyalgia #ADHD #Migraine #POTS #Dysautonomia #AutonomicDysfunction #Anxiety #EhlersDanlosSyndrome #MastCellActivationDisorder and so many other acronymns.