• Content count

  • Joined

  • Last visited

Community Reputation

0 Neutral

1 Follower

About ANCY

  • Rank
    Advanced Member
  • Birthday 12/04/1991

Profile Information

  • Gender
  • Location
    Peyton Co
  • Interests
    The Bible, Church, playing musical instruments,Cooking, Research

Recent Profile Visitors

1,747 profile views
  1. Thanks Wintersown. Glad to hear PT has helped you so much! My GI said possibly doing PT, or surgery if it's more complicated and related to my ongoing spinal osteomyelitis.
  2. Weak muscles arms and legs

    I have extreme muscle weekness and fatigue that comes and goes along with a "baseline" weekness. My dr believes it is due to a lack of profusion when my blood pressure gets really low. Makes sense for me since one of my presyncope symptoms is weekness that can cause me to collapse. I also have chronic anemia and intermittent malnutrition contributing to my weekness.
  3. Sorry you are having such trouble, I hope you find relief soon! It is such an uncomfortable situation... I use a mix of diffrent laxatives, linzess, suppositories and enemas, and even then still have trouble. My GI is actually doing some manotomy testing Friday because he thinks there may be some new dysfunction/lack of function with the rectal muscles. I would caution that there is the possibility of a bowel obstruction with this set of symptoms. You can still pass small amounts of stool around an obstruction. If so, using miralax or osmotic laxatives could be life threatening by stretching the bowel so far that it bursts. There is also psudo obstructions to be aware of... you should be able to look up some past posts about that. Good luck!
  4. Symptomatic low nocturnal bp

    Maybe you could ask your dr about a sleep study? Sleep apnea or not it could prove helpful in answering why you are having sleep problems. Moving around after I've been sleeping, no matter how small the move, will affect my blood pressure. I hope you find some answers and get some much needed GOOD sleep!
  5. Symptomatic low nocturnal bp

    I also have NCS. That reading can be a problem for some, although it is typical to have a slight drop in bp when sleeping. I don't loose consciousness with bp >65/30 but of course can feel horrible well before that. Something that came to mind is sleep apnea, have you been tested? I have a c pap and when I use it it helps me not wake up as frequently with NCS symptoms like you describe. The reading on your back, is that after changing position? Do you know what your oxygen levels are during these episodes?
  6. Gluten Challenge

    Not much to add to the good advice just two things that crossed my mind... you said in the morning you saw the heart rate increase, could that be when you are less hydrated? I know for me it makes a huge difference and with my feeding tube now I never go the night without hydrating. Saw a marked improvment after my feeding tube was placed directly related to having fluids overnight. I know not possible for most but some people will chug down water in the morning before getting out of bed to achieve the same result. Secondly, yes, ferritin/anemia can affect POTS, it does for me. I'm treated by a hematologist for my anemia and have iron infusions about every 11 months. I show improvments in my POTS after the infusion and more energetic as well, to a degree lol! It's not a cure all, at least in my cade, but every little bit helps. My hematologist, whom I saw today, believes that I have an absorption problem that may extend beyond iron and we may look into that in the future.Hope your dr is able to work with you and you find some answers!
  7. Pots And Bradycardia

    Milliesgirl- so sorry things are so difficult for you. You will be in my praters, and that you find the dr that will help you the most. It can be so hard facing medical hardships and unknowns, only compounded by not having the support of your medical team. I agree with Kim, could you get a second opinion? I'm currently in process of getting a second opinion for my osteomyelitis because it seems my current one has given up on trying to solve the problem. Keeping a journal has been very insightful for my Drs as well, more of a long term picture unlike the 30 minutes you spend in the office. I feel for you with the syncope and consequent injuries... I've passed out 5 times today, last Monday passed out and fell out of my wheelchair, not good for back pain that's for sure! Is your knee ok now? The worst injury I have sustained (my family and I are careful to avoid "uncontrolled descents") is a concussion last year which led to developing persistent severe bradycardia. They put a pacemaker in a month later when my avg hr went down to the 20s and wouldn't exceed 40 even with moving around in PT. Pacemaker was life changing for me, if you want last year I posted more about that. It not only brought my heart rate up but assists when my bp is dropping by raising my heart rate to compensate. I went several months without passing out, then developed other crisis and my body couldn't cope with it all and started passing out again. Wishing you all the best and hope you find what works for you!
  8. High and low blood pressure

    That is our (neurologist, family and I) biggest concern with the Northera. Midodrine usually looses it's effectiveness for me around 3 hours, so yes, the change Would be huge. I'm glad clonidine can do so much for you! I can't imagine juggling a third, the headache of deciding what and how much... I don't think I've been on it long enough to draw any conclusions, especially with everything else going on. I do use compression stocking but currently not tolerating an abdominal binder, can't even wear my back brace as much as I'd like to... Stomach bloating has been a big issue, May be the moraphine. I hope you recover quickly and can return to your desired activities. Can be so hard sitting on the sidelines waiting for your body to "let you back in the game."
  9. High and low blood pressure

    Sarah- thanks so much I'll look into the FB page. That is exactly the difficulty of using both of these meds! Any tips on managing them? I new to the combo so eager for any ideas. I am required to lay down when I take the clonidine because of my history of syncope. My cardiologist was hesitant to prescribe it, said he felt wierd to give it to his patient who has the worst low bp and syncope. I feel wierd taking it lol! So far it has been ok since I'm laying down and not pushing my body while on the clonidine but of course that means more time in bed which equals more decondioning... viscous cycle lol! Heart rate is pretty managed, I had decreased the last couple months in the % of time it controls my heart but the last couple weeks it's been working over time, which means chest pain for me when it's pacing me high for hours trying to compensate... I shouldn't complain though, I'd hate to see the state I'd be in without it right now... I hope you are enjoying your sunmer, I've had some nice moments. Sitting with my family on the porch watching the sunset with the horses and goats frolicking in the foreground is very relaxing!
  10. Disassociation with POTS syndrome

    I'm so sorry you are having this symptom. I do not get this from my pots but experience it any time they gave me Reglan or Phenergan for my gastroparesis, it's absolutely awful and I'll be praying you find some answers!
  11. High and low blood pressure

    Bombsh3ll- Thank you for sharing your story and compassion. I hope you find the forum helpful as I have. While I understand what you are saying I don't think it is true in my case because when I pass out and they take my blood pressure I am usually around 50/20 if they can get a reading at all. I have gotten critically hypovolemic before (ended up in ICU on dopamine) at that point they also could not get my blood pressure up over 70s/40s. This is partly why having high blood pressure is so different for me... While I'm not critical right now I am sure that, yes, I am fluid depleted. Thanks so much for your input! Crublv- Exactly! The picture is so muddled right now, and I didn't even share everything... I can swallow fine however my stomach doesn't tolerate much, especially right now... Oral volume is hard to achieve. I am 100% sure that I/O is a problem, some days are worse than others but every day is a challenge. For example... Last 24 hrs: only 30 oz through the tube (normal would be 80+) and maybe 6 oz oral. Vomited 3 x (I'd estimate between 6-10 oz each time) and diarrhea x 4. Urinary retention makes it difficult to tell where I'm at there, only urinated once... I will try and keep a more accurate record I/O, thank you for the advice it may indeed prove helpful. I don't know what they could do to help at this point though as ID doesn't want any long term IV... KiminOrlando- Thank you for sharing your caution/experience about Northera. Much of what you said is the reason I am not already on Northera. My neurologist is doing a research study with it so I've also read A LOT about it. We've decided the study is not right for me but still considering a possible trial of the medication. They have not tested my norepinephrine, treating based on blood pressure. I have Joint Hypermobility Syndrome Geneticist said if I went to another geneticist they would have diagnosed EDS but he would not because my skin is to "normal". My mother and sisters also have a diagnosis. So yes and no... Have not had an upright MRI, I believe they are blaming the vertebra trouble on the infection. It is also difficult for me to get an MRI because I have a pacemaker and they have to take special precautions and only to be done if absolutely necessary. They did do a supine c spine MRI in December when I had the meningitis which showed degeneration and early spondylotic changes to the vertebra but no indication of infection of the c spine. We think the changes may be from the years I spent passing out 20+ times a day with my neck dropping uncontrolled. That's just a theory though... I hope you do find something that Will be of help to you, even if its not Northera. Thank you all!
  12. Over the last several months I have been dealing with osteomyelitis of the L4 and L5 vertebrae and discitis. This has affected my "normal" dysautonomia symptoms and now dealing with blood pressure that is going high (which I'm not used to) as well as dropping quite low and causing syncope. I know there are many things playing into this but just wondered if anyone had any tips on dealing with this? Dealing with high blood pressure is a new thing for me. I am on florinef 0.1 mg 2 x a day every day as well as midodrine 10-20 mg 5 x a day as needed, also clonidine 0.1 mg 3 x a day as needed for bp > 155 systolic. If you would like more detail please continue reading: June 2016 Open J tube placement with wound dehiscene resulting in 6 month long wound infection treated with 2 rounds of levoquin and 3 months of bactrim with little to no response. November 2016 acute kidney failure resulting from hernia preventing adequate fluid intake through j tube. PICC line placed for hydration despite concern of active infection and previous history of multiple sepsis events. December 4, 2016 sepsis with 3 bacteria identified on cultures, also meningitis. Treated with 5 weeks of IV antibiotics during which time abdominal wound infection also resolved. January 30, 2017 large abdominal incisional hernia repair with dissolvable mesh. February 1, sepsis 3 days after surgery while in the hospital 2 bacteria identified. Treated with 2 days iv antibiotics and 2 weeks oral Levaquin. Backnowledge pain starts and progresses gradually. February 26, Back pain becomes unbearable and CT at ER shows changes to L4-5 vertebrae and concern is raised about osteomyelitis. Transfered to a higher level of care hospital where MRI was preformed. Unable to diagnose and sent home under observation by infectious disease dr. March 20, hospitalized due to increased pain, urinary incontinence, sensation changes in legs causing concern for compromised spinal cord or nerve roots. Repeat MRI shows progression but no compression of spinal cord. First Biopsy of L4 is done and cultures come back negative. May, Cardio prescribes clonidine because of elevated blood pressure believed to be a result of the back pain. Blood pressure continues to widen in range bouncing between 170/120 and 70/30. serial scan MRI shows significant worsening of vetebral bodies and disc height loss indicating discitis along with the presumed osteomyelitis. June 8, biopsy of L4 L5 reveals chronic osteomyelitis with osteosclerosis confirmed by pathology, still no pathogen identified. June 10, diagnosed with Strep throat and placed on amoxicillan for 10 days. June, Started on bactrim for chronic infection of the bone. Antibiotic is causing increased nausea, vomiting and diarrhea which is impacting tube feeds resulting in lack of nutrition, weight loss, and dehydration. Waiting to get in for a second opinion for Infectious disease Dr per recommendation of several treating physicians and caregivers. Neurologist is seeking a way to get ivig covered (doing an emg to look for demylinating neuropathy) because we already know it helps and he believes it could aid in treating the osteomyelitis. Neuro is also considering a trial of northera to try and get a better handle on BP and syncope which is almost a daily occurrence. Thank you so much for your time and whatever ideas you can share!
  13. Hi!! I'm New!!

    I also have chronic iron deficiency anemia managed by hematology by doing yearly iron infusions. I do notice I'm more symptomatic with low counts however is not responsible for all of my symptoms.
  14. Hi!! I'm New!!

    Hi AissaJ! Welcome. While I don't have something severe as Noonan's I was born with a bilateral cleft lip and palate which required 12 surgeries for repair and frequently interupted childhood. Also short in stature at 5' so hear you there! I have recently lost height due to chronic vertebral Osteomyolitis so maybe not even 5' anymore lol! Have been dealing with debilitating symptoms from Dysautonomia for 5 years now, sorry you are having trouble with it now. I can look back and see things from my childhood which I ignored seems that I Also have something autoimmune underlying (proposed by neurologist) that kicked things off 5 years ago following a sinus infection. That so far has been a dead end road as my autoimmune blood work leads in no specific direction. For advice I don't have much more to offer, just second the salt, fluids, & don't over do it. I found jotting down symptoms and measurements (bp, Hr, O2...) to be helpful in the beginning because I could better know my body and learn where my limitations were to a degree. Also was helpful for my Drs so they could get a more widespread picture than the 30 minute office visits. My Drs are very accommodating and we've worked together a couple years now, I hope you will eventually be able to find the right team of Drs. It is a test in patience with this... Often takes a while for diagnosis and then finding what works for you because it's a lot of trial and error. BTW also a farm girl 5+ acres with horses 3, goats 5, chickens 32, rabbits 4, and of course 3 dogs lol! Wish you all the best and hope you find help and support here as I have.
  15. I have had this happen to me a lot recently. My blood pressure is out of control at the moment and some days I have to take clonidine to bring it down (prescription is written for systolic >155) and other days I take midodrine to raise it. Recently the midodrine hasn't been effective at 10 MG every 3 hrs so today my neurologist told me to try taking 15-20 mg. because it has a very short half life it can cause a yo yo affect. When I was taking the midodrine @ 10 MG 5 x a day every day I didn't experience this but now I do. He's hoping the increase will work but if it does not then he's considering placing me on Northera. I am also on 0.1 mg of florinef 2 x a day. I hope you find something that is effective for you. Keep in mind that for most people it takes a while to really get a handle on things and find what works. Unfortunately it's a lot of trial and error as each persons body is different.