Sheri Lynn

So I have dysautonomia (POTS) AND HYPERSOMNIA as my two major diagnosis. I had a power port plaed in January and do saline infusions 3x a week. (They are pretty positive I have low blood volume). My concern is it doesn't seem to help as much now and the day after an infusion my urine can be really dark. My meds don't cause dark Urine and I drink one diet soda a day, everything else is water. My ALT was high on my lab work as well. Anyone have any thoughts or deal with anything similar?

I've had bp as low a 60/40 & not passed out. Other times I've passed out as many as 25 times in a day. I also have hypersomnia so its hard to tell what is passing out & what is sleep attacks. Sitting down usually helps and then i know its because of the dysautonomia.

My veins blow and/ or collapse at the slightest thing. I do Iv infusions twice a week at home, hence the port. The surgery took about an hour in or. Once I could tolerate drinking and could go to the bathroom I could leave. I got there at 5:30 and left about 12:00. The soreness is much better today and to be honest I've only taking meds (other than Tylenol) at night because laying flat hurts. I've had difficulty breathing today but I think that is because I've done more and been outside and it's 11 degrees here lol. I showered, did light cleaning and went to the grocery today so pain is pretty much gone, but very sore. I also have issues with knowing that something is I'm my body and my major vein so I'm sure when I think about that I notice much more. I will access it the first time on Monday and I'm being that holding the port stay will be pretty painful. I hope your daughter finds something that helps ease her symptoms. I don't know if EDS would make a difference (they've suspected that with me but since treatment is the same I've not dine the testing) but I would certainly ask. Good luck and if you can keep me updated on your daughter.

This morning my Bard single lumen power port was placed during surgery. So far I'm sore & uncomfortable if I stretch my arm out very far. I go tomorrow, if the weather allows, to be trained to access it. I'm very unsure if what to expect pain wise throughout the recovery period. To be truthful I'm kind freaked out about displacing the catheter by to much movement. Anyone have any experiences to share? I'm hoping it week be worth it & by hearing others experiences I'll be more prepared.

Swimming also puts your body in a position that doesn't cause ortho static hypotension and blood pooling as badly. I'm guessing this is why it doesn't cause us so much trouble

Welcome. I would definitely talk to a Dr that specializes in pots and dysautonomia. I was diagnosed with anxiety and panic attacks 13 years ago after my father passed with me trying to revive him. I was always a high strung child and diagnosed with asthma at 14. Now my Dr thinks I've had dysautonomia most of my life and that caused the symptoms to appear as asthma and anxiety (although I'm sure the panic attacks following my father's death were mental health related). I'm finding much of my life (that I thought was normal) can now be explained as Dysautonomia. See if there's an autonomic specialist in your area and request a tilt table test. I've passed multiple tests with no results but the tilt table and ans testing had my diagnosis within 2 weeks. Good luck to you

I just got my diagnosis last week. My doctor said my eeg showed spikes and waves that suggested seizure like activity. Although we aren't focused on that right now since there isn't 'clinical evidence' it's still concerning. I'm sorry your having to deal with this

I work 40 hours but I am able to take breaks when needed and my team is very supportive of me taking care of myself. I grocery shop and do many of the household chores. However I down close to 100 ounces a day of water, take beta blockers, use counter maneuvers and still nap even afternoon and have times I just have to sit/lie down from feeling pretty syncope. Every day I feel like I'm probably pushing too hard and take take another step but I'm afraid if I stop for a break I won't get back up very soon. I'm still coming to terms with this diagnosis so hopefully I'll learn to manage symptoms better.

Charlotte, Did you have issues with the Spanx top rolling down? Mine seems to help but the top rolls down in the back and it gets very uncomfortable

Dr doesn't think my insurance will pay for the JOBST Compression stocking he wants me to wear so he suggested spanx. I've gotten the tights and the hi waisted thigh shaper. Wore the thigh shaper yesterday and the top in back kept rolling down. Any suggestions on what type is the best and/or how to stop the rolling down issue. At this time I'm still working 40+ hours a week (thankfully my job allows me flexibility to take breaks etc) and I know the compression really helps me so I really want to get something that works . Thanks !

Finally got a diagnosis today. Specialist told me I have Generalized Autonomic dysfunction and ortho static hypotension. Seems harder to find info on autonomic dysfunction then it is for the specific disorders. Any suggestions ? Starting proponolol 30th tomorrow and having a emg test for nerve damage. I'm open to any and all advice since it looks like I'll have this issue from here on out

won't have results until Thursday. The tech doing the test told me as soon as she elevated me my bp spiked and hr jumped over 20bpm. My hr stayed high but didn't raise above 117 and everything became normal within one minute of laying me back down. The same thing happened when she stood me up off the table. Any ideas??? Please, I'm behind ready for answers! I'm nervous that something happened but I may not have met criteria!

I won't have results until Thursday. The tech doing the test told me as soon as she elevated me my bp spiked and hr jumped over 20bpm. My hr stayed high but didn't raise above 117 and everything became normal within one minute of laying me back down. The same thing happened when she stood me up off the table. Any ideas??? Please! I'm nervous that something happened but I may not have met criteria!

Dr and I discussed what meds to avoid. I had to stop my beta blocker Fri and I can't belive how much worse my hr and dizziness is. Most can't understand why I'm hoping to get sick, at this point I'm sure all of us just want answers . lol The ride home makes me nervous ..I plan to work that day then I have a 45 min drive home after the test.... May make alternative plans after hearing from you guys! Thanks die for the advice.I'll pack some applesauce or apple chips. I had planned to take water as my trusty bottle is always with me lol.

I'm scheduled for my tilt table test Monday. I know I can't have caffeine or nicotine 4 hours before the year. I am not sure why though, possibly an increase in heart rate? Any suggestions from you guys that have been there? I really want an honest result.

Yes. My doc want super worried. My bp runs low as well, even before the beta blocker I had readings as low as 86/49. So starting the blocker was scary hopefully since I've found the right doc well hey some answers. Thank you

Momtogiuliana In having the same issues with high heat rate.started beta blocker about three weeks ago, and to keep some with dizziness. I really want to get one of the monitors to keep an eye on the hr as I'm still searching for a dx. During my sleep study my hr didn't drop below 90 to 110. Any suggestions? I'm sorry you went through that but it does help to know I'm not alone. Thank you !

Saw the dysautonomia specialist today and I'm scheduled for tilt table, mri of Brain, eeg, 24 hour urine, autonomic testing and blood work Today inculding ANA! He isn't ready to speculate on a dx but did say he thought it was autonomic dysfunction of some sort! I'll continue beta blockers until three days before tilt table and continue 3+ liters of water daily. I'm so excited that someone finally thinks they are getting close to answers!!!

Katie In curious about the foot issue. About two years ago I started having crazy pain in my right foot. Was eventually told my arches has fallen and I had posteir tibal tendon dysfunction, was told to wear braces (didn't help) and motion control shoes (did help). My ankles roll to the outside and putting full weight on my foot tend to make my entire foot roll inward and lots of pain. Now my left foot is also starting to do the same. Is this EDS or POTS specific?

Has anyone tried detox methods to see if they help with symptoms? I'm just wondering because I did the ten day green smoothie cleanse and it seemed that my symptoms were lessened. I also started a heavy duty stimulate at the same time so I'm sure that was part of it.

Thank you Dyspaient! I clearly haven't been dealing with this as long as you have and I hope you get some answers soon as well. Thank you for your input and encouragement !

I do check my bp at home. So far it seems the OI definitely corolates with low bp. I do know the me I drink the better I feel. I never thought of peeing it all out though, so I'm going to try to up salt. If assumed my salt was OK since my last blood work showed a sodium level of 144, although I know that is within normal ranges I'm not sure what level is optimal. I haven't returned to work yet, hopefully tomorrow, as we have over 10 in of snow. Thanks for the advice. I'm just praying this neurologist will be able to give me some answers. Been looking for answers for 9 months, ruled out narcolepsy, Lyme, etc and been diagnosed with sleep apena and tachycardia. Primary care doctor is sure it's POTS and I honestly don't know what I'll do if this neroulogist doesn't find something? I know this isn't all in my head???

Thanks so much!

Yes I have started synthriod as well as a beta blocker to lower my heart rate some. I've been sick for the last 8-9 months and per my primary care doctor I began drinking 3-4 liters of water daily and wearing compression socks.increasing salt is difficult as I'm not sure how much to increase to. Drinking more water does seem to help though.Thank you both

For the last three days I have felt nothing short of awful. I'm eating once daily (still small meal and very little carbs) because I get so dizzy my, sleepy and nauseous afterwards. I've been lucky to be off work due to a severe winter storm but I have no idea what I'll do when I need to go back tomorrow or the next day. So far all that's helped relive it is sleeping for a couple hours.. I've got an appointment with a neroulogist who specializes in dysautonomia on March 11 but that's just a consult and I honestly don't know if I can make it that long if I don't find some type of relief... My hands and feet at constantly cold, to the point of being painful. I'm considering wearing gloves indoors lol My bp is pretty low normally, pretty sure there's some orthostatic hypotension as well. My pulse is usually about 80 when resting but can go as high as 149 when standing. It didn't always jump the 30 points after standing but usually. I also get these weird bouts of trembling.... Sorry I know this sounds whiny and so many have it worse than me. I'm just hoping to see if this sounds familiar to any of you and if Anyone has any tips to help until the Dr appointment? Thank you!