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About kt42487

  • Birthday 04/24/1987

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  1. ugh you mean I need to move more when I just want to go to bed?! Haha just kidding, I have been busy and therefore slacking off on exercise, you’re probably right. It’s so unfair how quickly the flare up can hit and how slow it is to pull out of it.
  2. Hi all, I’m not very active on the board diagnosed with POTS in 2012 which is secondary to Ehlers Danlos Syndrome (unspecified type). Anyways my POTS has always been managed with rest and increased fluids and electrolytes. I have occasional crashes where I just feel like garbage but they generally don’t last long. Well now I’m 6 weeks into all day chills in my legs and back, on and off tremors, nausea, heart burn, 100’s of PAC’s a day which I feel in my chest and neck, all over stinging itching, brain fog, and very bad pain in my neck and shoulders. PCP thinks it’s all POTS + anxiety/stress but ordered blood work and a 24hr urine to check for endocrine tumors. Started Zoloft and lorazepam (as needed) 2 days ago but generally still feel like crap. Any one have home remedy ideas to pull myself out of this? I’m a grad student and I’m feeling like if I can’t get it together I’m going to need to take a medical leave of absence. TIA!
  3. Boymommy3, the pressure experience you had sounds similar to mine, especially the bridge of the nose pressure, my glasses suddenly feel like they weight 20lbs. If it went away on its own for you that gives my hope! I am going crazy!!!! I put a call into my pcp trying to get her to refer me to neurology and had no such luck. I also have a lot of numbness and tingling in my face, between my shoulder blades and down my arms. I wonder if the head pressure and tingling are related?
  4. For the past month I have been getting these awful head and neck sensations. I have been have such a hard time explaining exactly what it feels like to a physician that they just palpate my neck and tell me they don't think there is anything wrong. I am wondering if anyone else out there has a similar experience, every afternoon around 2 or 3pm I get this whoosh of pressure that comes up my neck and goes into my head. The only way I can think to explain it is it feels like doing a hand stand under water while drunk. There is a pressure feeling both on the inside and outside of my head and my neck feels like someone has there hands wrapped around it strangling me. This sensation last any where from a few seconds to hours and it completely disorients me and is occasionally accompanied by a stabbing pain feeling that travels up along side my neck and I think I am going to have a stroke. My heart rate and bp are completely normal when this happens usually 110/60 and 90bpm. Does anyone experience this? Did you figure out the cause? Find anything that helps make it go away? I feel like I am going insane and am a completely worthless disoriented drunk from 2pm to 8pm. Oh and this is not a medication side effect, I been advised to get off all meds and start over since nothing has worked for me. Thanks in advance for any info!
  5. Well unfortunately this change in hr definitely did not mean I was getting better. Now my heart rate rests at 50 and standing is 110-120. It seems to be worse. I am currently not on any meds. I have tried fludrocortisone, midodrine and a whole array of beta blockers. Nothing has helped so my cardiologist took me off everything to start at square one and see where I was at. Hopefully he will have some better solutions soon. Tanzanite I can't not believe a hr of 32bpm feels ok for you. That's amazing. The second my hr slips below 50bpm I get awful palpatations, skipped beats, and extra beats followed by a real strong beat.
  6. Has anyone experienced going from tachycardia to bradycardia? I have consistently had a resting hr of 90 and standing of 120-140. For the past 3 days my resting is 55 and standing is around 70-80. I would love to think that this means I am getting better, but there is a big problem; I feel worse. I am dizzy, numb, pins and needles and have a weird pull pressure like someone is trying to pull my head off of my neck. So a heart rate of 70 blood pressure of 100/65 and my cardiologist is telling me to "celebrate, you're normal again!" And yet I feel horrible, has anyone experienced this? What was the outcome? The only thing I think to do is eat a ton of salt and take my "as needed" midodrine in hopes that my bp will go up a little and stop this drunken dizzy feeling but nothing is working.
  7. Thanks for the info on compression garments. I may look into that. I seem to pool in my pelvic region. Pulse supine is 60-70, sitting 115, standing 120. So going from a laying down to sitting position is more difficult than going from sitting to standing and with chronic pelvic pain since age 15 and pelvic organ prolapse it makes sense that that would be were the blood is going. Aside from the general dizziness, lightheadedness, blackouts that seem common with all of POTS patients my most annoying POTS symptoms seem to be very neurological; numbness in the face, random locking of my joints, shaking, pressure in my head and neck (as if there is too much blood in there). This is why I have been curious about MG b/c most of my most annoying symptoms involve my face, head and neck and I am wondering if they are not actually POTS symptoms. I have browsed the forum and I guess would have to consider myself lucky in the sense that I am able to get out of bed in the morning, do over an hour of cardio exercise a day, chase a baby around and attend college full time. Yet, I would love to wake up one day and not have to push myself through the day or worry about those annoying palpitations. It is my understanding that those that have POTS due to EDS will go into remission and then continue to have flare ups during various times through out life, I am hoping that there is a chance that this debilitating syndrome will leave.
  8. Thanks Katie (I'm a Katie too). I'm sorry you're not feeling very well. I'm in the same boat and feel like I am having a constant heart attack. I tried the EDS board and didn't get very far. The aches and pains that come with hypermobility pale in comparison to my POTS symptoms so I ended up on this board. If I could figure out how to manage the POTS I would be a functioning person again. It's such an uphill battle.
  9. Hi all, I'm a newbie. I was diagnosed with POTS last October after months of fighting a GAD diagnosis. After finally getting my internist and cardiologist to stop looking at me like an insane hypochondriac it is now believed that I my POTS is secondary to ehlers-danlos. I score a 7/9 on the beighton, have pelvic organ prolapse, mitral valve prolapse, early onset varicose veins (age 17), gorlin's sign (my tongue touches my nose), flat feet, tmjd, knee tendon repairs, reoccurring shoulder bursitis and subluxations of my hips, knees, ankles and shoulders, and now POTS. All of these joint problems and I am old 25 years old. I am back and forth on whether I would like to proceed with genetic testing as I am afraid to be labeled for health insurance purposes. So my questions: Any other EDSers out there? What works for you to control your POTS symptoms? I find I mild relief from fludro and atenolol. I have tried bendzos, SSRIs and midrorine all of which were a total disaster. My issue is, if I do have EDS then being on fludro may deteriorate my joints and skin even more, yet it is the only thing thus far that has allowed me to get out of bed and I am single mother to a 16 month old little girl (her father is deceased). Another question is in regards to myasthenia gravis, I noticed that there is a medication that is regularly used for MG that also helps with POTS. I have been having a choking sensation as well as facial numbness/tingling, sudden onset lazy eye and occasional dropping eye lids ( feels like when Novocaine is wearing off all over my whole head). During my last visit to my internist I brought this up and she said she was able to palpate the top of my thymus in the hollow of neck and I have a follow up to investigate this on 1/30. I am wondering if any one knows of a connection between MG and POTs or MG and EDS or all three. Any and all info. is greatly appreciated. Wishing everyone a symptom free day!
  10. Sorry to hear about your sons dysautonomia. I am currently a college student and in my last semester. I take online classes as well as hybrid classes (half online half in class). I find the classes that I have to attend to be very difficult and I end up very dizzy about 20 minutes into the class. What I have found that helps me is to notify my professors of my condition, this allows me to eat and drink in class (salt and water can sometime pull me out of a dizzy spell). I also sit close to the door so I can get up leave class, walk around get my blood circulating again and then I come back into class and I am usually able to sit for another 20-30 mins. As for the dorms, I would suggest ear plugs a good mattress pad and a CD with calming noises. My biggest concern for living on campus would be in regards to campus foods, they are generally unhealthy and full of a lot of additives that my bring on more symptoms, I know for me personally when my diet is off I feel worse all around. In this sense it may be smart for your son to rent an apartment where he has his own kitchen and can prepare his own meals. If you worry about him not getting the full college experience due to living off campus, check out a roommate finder online, there are probably students that rent home/apt/condos off campus that have a room available and you can go sit down with them and interview. That way he would not only have his own room as well as access to a kitchen but may also have roommate who are sophomores juniors or seniors that could help him find his way around campus and give him a good support system. Also I would suggust for him to schedule mon, wed, fri classes. While it's nice to try to cram your schedule into tues. and thurs. and then have a 4 day weekend every week, those classes are going to 75 minutes long and it makes for a long day. Mon. wed. fri. classes will be a quick 50 minutes. My final note, find out what the university's withdrawal policies are like. Should he need to withdraw for medical reasons the university may or may not refund your money in full. I had to completely withdraw from the fall 2012 semester and despite have full documentation I was only refunded 1/2 of my tuition. Good luck to your son on his next adventure in life, college can really be a blast!
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