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HelpPOTS

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  1. 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?
  2. 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?
  3. 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?
  4. Can someone tell me a forum where someone might know this? I really need help!
  5. 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?
  6. 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.
  7. 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?
  8. 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!
  9. 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?
  10. 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.
  11. 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?
  12. 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
  13. 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.
  14. The other day my heart was hurting so bad and had trouble breathing, that I went to the Emergency room. Doc did a Cat-scan of the chest and sent me on my merry way. Although he told me to follow up with my doctor because there was a nodule? in the upper part of my chest. Any ideas? Also siad there was some fluid on both sides...
  15. 17 year old male here who has POTS, eds, retroflexed odontoid, and a tethered cord. I just wanted to ask about the cold sweats i get all the time. My forehead is cold, my hands are cold, my private area is somewhat blue, and my heart is hurting. Could this be from the POTS and do other people get this? I think it could be a circulatory problem. How would i go about testing for that once i tell my doctor?
  16. So do you think the cognition problems could be caused from that? Is it feasible i mean... Also if not speculate with me here! Also how did you like Dr. henderson? I thought he talked way to fast and pretty much skimmed over evrything like he was in a hurry. Still he is probably one of the best doctors i have ever met finally pointing this out. And why haven't you gotten surgery? (curious) Thanks Mack's mom for caring. When i went to doctor Rowe a few times ago i showed him the post i made on these forums and he saw you responded.
  17. Hi i'm 17 years old and have been suffering from somatic symptoms since i was about 12. I have been through soo much **** with the phyciatric side of medicine and misdiagnosis(i do have OCD though) I always said it was physical from the beggining and have been repeating the same symptoms since. THE most biggest problem is my impaired cognition or slow thinking, what have you. I always said i wasn't gettiing enough blood to my brain or I couldn't think before i was diagnosed with anything. some symptoms- -head pain 24/7 -tenderness of scalp -cant visualize anything like books, dont react to anything such as outer stimuli or have emotion -no continous thoughts have to strain my head to think a simple sentence (why i cant talk to people for 5 years) -so i dont wonder about anything im just basically so fatigued and numb -memory is so bad that i cant remember what i did yesterday and everything is so vague Dr. Peter Rowe at Hopkins reccomended seeing a nuerosurgeon by the name of Dr. Henderson because i was positive for hoffman's sign. I saw him and he said i had a very abnormal clivoaxial angle secondary to retroflexion of the odontoid. He also suspects i have a tethered cord. I want to know if this could explain my POTs and my cognitive impairment. This is not brain fog, this is like dementia or brain damage. So my theory is that the spinal fluid is blocked(why i cant run and stuff and go over speed bumps without getting a massive headache (no shock absorbtion) and the blood vessels are somehow blocked and not enough oxygen is getting to my brain ie: Hypoxia. Also he suspects i have sleap apnea and i agree. Please tell me that im on the right path or this stuff can be explained through this! It has been ****(understatement) not remebering your childhood not being able to feel emotion or keep yourself entertained with your own thoughts.(also this is purely physical trust me) And this is just some of the stuff Also I have never had a head injury except when i was like 7 when i slammed the back of my head against the side of the pool. I just had to get stitches and was fine but there is a noticible crease in the back of my head. And coincidentally this all started to happen right around puberty so another theory is it just grew wrong(like the chiari)
  18. Hey i was wondering if anyone else had it bad mentally. I'm diagnosed with OCD anxiety and major deppresion(after 22 ects) but I still don't know what is causing how i feel. I also have POTS. Here are the symptoms- ever since i started puberty (17 now) I have been complaining that I couldn't think or focus. -I just feel too drained to think and it takes all my focus and brainpower to say a sentence in my head(why i cannot talk to people) -my memory is terrible and again it takes all my energy to try to remember what i did yesterday. I mean some memory is there it is just so vague. -I cannot visualize things in my head -can't speak up and talking is a chore It is really bothersome and I can't socialize(for brief periods can) or even entertain myself with my own thoughts and I'm so low i'm dulled out to everything(not deppression related) Should I ask my doc about trying a stimulant? Can POTS do this too you or are there any disorders related to it? I have gotten three mri's for headaches and i had memory problems before the ect but only briefly. I have had no trauma to the head. Thank you
  19. Hi I am a 17 year old boy who has been diagnosed with POTS and high blood pressure. I don’t really rmember but my mom said I started complaining of physical symptoms about 4 years ago where I was saying I couldn’t focus or think on the basketball court. A lot has happened since then mentally( I have severe OCD) and physically. So I was diagnosed with POTS about a year ago. I think the doctors were toying with the idea before then but they were more focused on the mental stuff(have stayed at Hopkins but wasn’t diagnosed there) About four years ago I could run 7 miles for cross country(had some weird clicking sensations in head though ) Now I can barely play basketball for 5 minutes before almost passing out(never passed out before) and sweating a lot. I need help. I have always been complaining about physical symptoms since this all began. I always said from the start that I “could not think” Symptoms- blood pressure would range from 130/80 range and then drop, or go up to 156/105 and then drop. Pulse sitting would be like 100 and then standing would be 132. -can’t speak loud or yell or speak for long or get really lightheaded -flushing in face -headaches all the time or head pains usually in the back of head(have gotten mri etc.) -When playing basketball or exercising if I persist I get so dizzy and sweaty I can barely see.I have ringing in ears or lose hearing for a bit -D?j? vu -get clicking noises in head usually when I walk or make movements kinda like a tick tick tick in succesion, sometimes spot hurts where it happened -always have tender scalp or my scalp hurts, I swear it feels like the upper half of my skull isn’t functional or just numb and my scalp is really tender to touch -memory is horrible cannot visualize things in head or imagine ex. In math I would do problems one day after being instructed on steps and forget how to do it next day. Barely remember childhood looking back is just a blur. -have to force thoughts almost through my head like memories or thinking, I have to say the words like im talking else I go back to being “subdued” - It's almost like my brain is asleep, I feel breathing in lots of oxygen helps for a few long seconds - I feel like I am not getting enough oxygen to my brain or blood because I do not feel “full” like I don’t have enough “oomph” -I pretty much have edhonia, don’t get happy or angry or react to anything. Have gotten ects and been on almost all antideppressants I want to know how much POTS is doing to me. Meds: Anafranil 175mg, Klonopin 2mg daily, luvox 25mg, pindolol 2.5 mg makes my blood pressure like 126/70 and pulse in the high 80s when sitting and standing. Florinef .02mg Please I can’t stand this anymore! Are my brain cells just dieing causing all these problems from lack of oxygen like hypoxia? I don’t want to live anymore and the only reason I still am is because I am so subdued and just go back to being sedated, cant work up anger or anything. My mental diagnosis: OCD, supposedly major deppresive disorder, but we don’t think so any more after 22 ects and all that medicine. And POTs! I have gotten many tests done like mri’s and some blood work. Now I am seeing A Dr. Rowe at Hopkins. Please, what should I do and tell me if these symptoms match up to pots. It was so hard to get a diagnosis. How can I manage this and am I just going to get dumber and dumber? I used to be very bright. Any suggestions would be a godsend for me.
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