HelpPOTS

Hello I've recently started the antibiotic minocycline just in case I had lyme. Though all my lyme tests have come back negative. I think it may be helping my energy but im not sure. Has anyone else been treated on this drug?

I have POTS, EDs, and high blood pressure and im 18. Sometimes (ecspecially tonight) my chest hurtsa more then usual I couldn't tell if i was more numb or not but i could like barely see and felt more loopy then usual.did it. My blood pressure was 148/90 and it said my heartbeat was irregul;ar for two times that I I could say the abc's straight though. But it was horrible and i wanted to go to the emergency room so i woke my mom up and it got to thew point where we were gonna go but she convinced me ive been before for simililar incident and they never helped. How do you know when it is a serious stroke OR TIA (which i thought it was) Do any of you guys have this problem?

Hello everyone. Does anyonew else with POTS or a connective tissue disorder have yellowin g of the whites of their eyes? It's getting really bad for me where my eyes are really tellow with visible red 'veins'. also i have some gray spots. Anyone know what this is caused from?

Can someone tell me a forum where someone might know this? I really need help!

It has felt like I am not getting enough spinal fluid to my head for so long! Like literally my head feels hollow and evry head turn I make hurts like crap! I can't even run because my brain hurts so much from the shock! My head feels so heavy when i bend over(like it is going to explode0 like I can almost literally feel that weight of the brain plop back into place when i stand up. I had tethered cord but got surgery. Have slight EDS. And have basilar invagination. I wasn't diagnosed with chiari by my nuerosurgeon but it feels like i have it. Maybe chiari 0. This is life altering and I don't even like to walk around the house because of it. i am certain it has to do with CSf fluid. i was also diagnosed with psuedotumor cerebri which implies I have too much fluid! Can you believe that! Anyway I had the shunt put in awhile ago and absolutlety no changes have occured even though I had to get a test to confirm it is working. Any ideas?

Omg i'm an 18 year old male and i had to have a lumbar shunt put in for this! I was actually getting surgery for My tethered cord and the spinal tap came back to high so they put it in. Weird thing is it didn't bring me any relief and I haven't noticed a difference. I always think i have too little spinal fluid in my head. I had mono when i was a child and I think i might have chronic sinusites so I don't know if they are connected somehow.

Who did your trans cranial doppler if you do not mind sharing? Were these tests done standing or lying down. I know in my case it could make a difference. Just an idea. Did they give you any additional feed back about the abnormal doppler? possibly mild stenosisng. I was sitting up. But for some reason my My mra is fine. But when the guy was doing the test my he couldn't get anything from my left eye and he said it was abnormal. So are there other tests to determine what is happening or is MRa gold standard?

Hey I recently got a Trans-cranial doppler ultrasound which came out abnormal for my left anterior cartoid and the left side. I have had an MRA of the brain though and it was alright. I have always complained im not getting enough blood flow to my head and have cognitive impairments. I also have a retroflexed odontoid and abnormal clivo-axial angle. The doctor is gonna get the MRA rechecked but I don't know. Any ideas? I know there is something wrong!

Dr. is writing a script for a PET scan of the brain. I have had severe cognitive impairment suspected of poor blood flow or a metabolic problem (worse then brain fog. Does anyone know the specifics, like does this show how much blood flow you are getting to your brain? Does it show how poorly or well you are thinking?

As far as genetic testing goes she asked for a family history and thoroughly examined my body. Would it be blood tests that she would order? How would she go about genetic testing without all the sequencing crap.

So I've seen a geneticist who has diagnosed me with a connective tissue disoder. She was suspecting Ehlors-Danlos because of my cervical issue but i don't have hypermobility. She can't make a diagnosis because of that. How do I find out which type I have?

Hi all about three months ago I was at the hostpital to get surgery done on my tethered cord. I am seeing Dr. Fraser Henderson and we are trying to rule things out (I do not have a chiari malformation). Anyway, while they did a standard procedure spinal tap my spinal pressure came back double as normal! He immediatly put a LP shunt in after the first surgery. Now, three months later he is baffled how it didn't help or affect me at all. He wants to get a test done to see if it is working but I am still in the dark as what all this means. He diagnosed it as psuedotumor cerebri but i think there is a cause and it isn't just spontaneous after all the other stuff i have got going on. I feel like I actually don't have ENOUGH spinal fluid because I can't shake my head, go over speed bumps, and bend over without it hurting so much(feels like lack of shock absorbtion). So could someone explain what this all means and what it is related to? I think something is blocking it or something for pressure to build up in the spinal canal BTW I have POTS, an unknown connective tissue disorder and a retroflexed odontoid

Hi i'm a 18 year old male who has been suffering for almost 5 years now. I have a specific problem that I thought I could get ideas on because this site is related to the chiari/ POTs spectrum. Well It all started with headaches and me complaining I couldn't "think" when i was younger. Well I have POTs(diagnosed about a year and a half ago) and had just gotten a tethered cord surgery. My main problem which i want answers on is my memory/ thought process. I Can't say the Abc's in my head without it straining. I'm always "subdued" and can't follow conversations much less have anything to say, like I don't have enough brainpower. I can't visualize anything and it strains my head to try to do so. I can't remember what i did yesterday. I don't react to any outer stimuli(example when watching a movie have no reaction) I don't have constant thoughts, judgements of people, or wonderings going on, like I have force to think. It's like my mental energy is so low and my head constricted. I also don't have any emotion really like I don't get sad or angry like that part of the brain doesn't register.I have a really tender scalp all the time with a dry head. I also can't speak up loud or yell(because it talkes up too much oxygen i guess) It just literally feels like my head is constricted at the neck and i'm not getting enough blood to my brain. I was diagnosedwith a retroflexed odontoid and am in the process of scheduling surgery. I think the problem has to do with circulation issues possibly caused by stenosis of the blood vessels in the neck area. My Doctor (Dr. Peter Rowe) is optimistic about the surgery of the retroflexed odontoid but I wanted your opinion too and wanted to see if anyone could relate or had ideas. This is like vascular dementia not brain fog and it has been like this from the beggining but has gotten steadily worse. More info- Forehead gets cold as well as hands cold sweats facial flushing alot spotty hands headaches 24/7 really deep thin veins neck veins hurt as do temples Scalp very tender and dry all the time I know this might be hard to understand but I wanted to see if anyone could relate or has heard of this before. (Also yes i have been to the emergency room several times but as many of you probably know they don't do anything) I am seeing Dr. Henderson for the surgeries.

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