Tzipora

Hi everyone, I have a blood clot from the PICC line I use to get my nutrition (TPN/ IV nutrition, due to severe GI dysmotility). I got put on Coumadin and a week of Lovenox injections and I am a complete mess. It started with nausea and vomiting way worse than any I've ever experienced (and I live with chronic nausea and vomit fairly often but it's never been anywhere near as awful as since I started the blood thinners!) And now I'm getting more and more shaky and dizzy. It's only been three days. I can hardly type my hands are so shaky and they feel numb and tingly and kind of cold. I suspect I have some neuropathy issues in general (undiagnosed) but again, this feels worse than anything I am used to. At this point I feel like I'm in the worst autonomic flare up I've ever had. And it scares me because none of my doctors or the hospitals around here have any freaking clue about POTS and Dysautonomia. I was in the hospital a month ago with various issues and was in a severe POTS flare up and they could not help me. I'd tell them I had POTS, that my autonomic nervous system is very dysfunctional and they could see my orthostatic tachycardia and just kept insisting I was dehydrated and later the doctor eventually told me that neurology had never heard of my issues and that my issues were just too rare for them to know what to do. (Thjey also couldn't do a thing for my GI issues either...). My own primary care doctor tried to insist I don't have ANS issues and it's all my anemia...and I'm sure anemia and blood thinners can't be the world's greatest mix either... Nor or blood thinners and the wonky menstrual issues I have a good mix... So I'm not sure what to do and I'm just trying to get through the weekend at this point. I only have a superficial clot, not DVT. They flat out told me they wouldn't even treat it if not for my PICC line. The clot is in a superficial vein, the same vein in may arm that my PICC line is in and it rubs against the line making my infusions very painful. And potentially the clot could make it impossible for me to use my line. But I'm hoping to get a port anyway... So I'm not sure if there's maybe a way around this entirely or not. Obviiously i need to speak with my doctors too, I know that. But I am really wondering if the POTS (and the doctors who diagnosed me with POTS said they're sure I've got even more autonomic issues but they are unable to test for them...) is also adding to the complications here and I wanted to ask on this forum since as I said, my doctors don't know a thing about POTS... I get that there are blood volume and blood flow issues with POTS which is why I'm wondering if that might be adding to my blood thinner misery.... Any one have any experience here?

Chaos, Thanks so much. The hypertension came as a surprise. It's these severe headaches that my brother has been so concerned about (they sound like migraines to me, something else I deal with) but they discovered his blood pressure was high. Honestly we were testing my mother's old blood pressure monitor months ago so I could have it and he was high then too. And he is checking it at home and he's still running very high... He's going for blood work in the morning. I should maybe also add that my mother has hypertension and is on medication for it. So who knows. In general I worry about him getting treated where he is because the doctors aren't to great. He and my parents still live in the same place where I grew up and I've had a lot of health issues my whole life but they never could figure me out. I have a lifelong history of GI issues yet growing up, no one ever had the brains to send me to a GI and I can't at all figure out why! So that's one of my concerns too. But I certainly hope he's okay. Unfortuantely, I am very far from okay and very severely ill (as you can see from my signature). As I mentioned, unfortunately I've been away not because I was doing so well but because I was doing so poorly. I still am. Not even sure I'll be around here much in general. I'm very exhausted. I'm very anemic right now. Also dealing with low Magnesium and even low albumin levels despite being on parenteral nutrition and having been so for over 5 months. I can't eat at all. I also can't drive because of the Dysautonomia. And while my brother and I are growing close, my parents can't cope with my health and are not able to be there for me at all. But anyway, I don't want to throw my sobs tory out here, it's beside the point. It was all my GI issues that ultimately lead to my Dysautonomia diagnosis. But I do throw in my issues because I know my poor brother is probably so worried he's going to end up like me and I can absolutely understand that he'd be utterly terrified there! I would be too! Anyway, I told him to keep me posted on things and I'll try to stick around here and all and will for sure be back when I hear more from my brother too. And thanks again!

Hey everyone, I haven't been round in a few months and was a newbie then anyway. I have a whole lot of stuff going on with my health. But I'm back tonight, despite my heavy fatigue because I'm really wondering about something. I'm 22 (well, I will be in a few weeks) and just got diagnosed with POTS/ Dysautonomia about 6 months ago though I've had a sinus tachycardia diagnosis for a few years now. And I've got a zillion other issues, primarily very severe digestive stuff. I have a younger brother who is 18, almost 19. He's started having severe headaches that are really scaring him. He just saw his PCP and found out he ha high blood pressure (as in he was running about 159/87!). Out of curiosity I asked him his heart rate and it's in the 50's, so the upper end of brady range. I hope I didn't totally scare him since I know he's absolutely terrified of ending up anywhere near as sick as I am. And unfortunately where he lives, his doctors will never figure out if it' Dysautonomia anyway. For that matter the University of Michigan diagnosed me but are clueless on treating me so I'm trying to get into the Cleveland Clinic... but I digress! So my brother has considerable hypertension, bradycardia, severe headaches, and stated he has palpitations sometimes. I realize it could be a lot of other things too but I'm kind of fascinated because the vast majority of my own health issues have the possibility of being genetic yet no one else in my family has any of the diagnosises I have... I know there's obviously possible genetic links with Dysautonomia and know that a number of you also have siblings with it. I'm curious though, what are the chances of siblings having different kinds of Dysautonomia and very different symptoms? Because my brother's symptoms are like the exact opposite of mine (minus the severe headaches and palpitations, story of my life too) but I have a lot of problems with low blood pressure (I'm always below 90/60) and I have tachycardia. Like I said, I realize my brother's issue could be something else entirely but given that he's my brother and I have Dysautonomia, seems like it might be worth considering that he does also. But is it common for siblings to present in entirely different ways? Also, because I'm personally very severe and extremely disabled by my health issues, even if my brother does have Dysautonomia, there's still a good chance his will never get bad like mine, I hope, right? I'm just really wondering and wanted to come on here and chat about it because as it is, I know my brother is terrified. He's always been the healthy one. But my issues first started when I was about the same age he is now too... So anyway, just wondering about all of this. Any thoughts?

I'm still really new to the Dysautonomia stuff but I am extremely familiar with GI stuff. I have very severe gastroparesis that has been refractory to treatment. It was actually my motility specialist who figured out I had Dysautonomia first and then referred me to neurology. When the motility specialist got the tilt table results he literally said "I KNEW IT!" So there are definitely GI's out there who get it! I also see a general GI because the motility specialist is further away and is someone I can only see every 3 months. And while Dysautonomia is something he's not very knowledgable out, he's an AMAZING doctor who is trying to do all that he can to help me and so he's learning and willing to talk to all my other doctors. I've been screwed over medically A LOT and there are a lot of bad doctors out there too, as almost anyone with a rarer illness knows, but there are some excellent doctors out there too! I'll also add that when I first got sick with GI problems I saw an absolutely terrible GI while hospitalized who flat out scared me away from seeing any GI for months. And so I just suffered pretty terribly and got malnourished and lost a lot of weight, etc. But now my GI doctor is the most important one on my "team" and while I have a very severe case and am dependant on IV nutrition to survive and a lot of treatments have failed me, even I will tell you seeing a GI is so worth it! And the problem is that Dysautonomia and the related GI issues are very tough to treat. You're probably not going to meet a doctor who can fix everything but on the other hand there's a whole lot GI can do to help alleviate your son's GI symptoms and improve his quality of life and that is hugely important. And you may have to try a few doctors to find the right one but it's in your son's best interest. I don't know how old he is but the potential malnutrition that can come from GI issues is a nasty thing no matter what a person's age but especially bad in people still growing. So in my mind, if your son is having any sort of issue, he should get checked out and hopefully the doctors will be able to help. My GI issues have literally almost killed me on two seperate occasions so I'm a huge advocate of getting seen and checked out and finding the right doctor who will help. And with that I wish you the best of luck. And I can't even imagine how hard it is to be the parent of a child with chronic illness. My own parents don't cope very well and I don't even live with them so I can't even imagine how hard it must be for you. And I know you undoubtedly wish for a cure and to make it all go away but even if that's not entirely possible, don't give up trying, don't give up fighting for your son. It is the best thing you can do. It's something I wish my own parents would do...

Have you ever had a gastric emptying scan? Because you sound just like me when I first developed gastroparesis. Dysautonomia can definitely lead to gastroparesis and/or other dysmotility of the GI tract.

I don't know of any either but I'm in a similar place as you. I really want to go back to school since I'm at least half way to a BA but I have absolutely no way to afford it right now (and at best only have the health to take an online class or two) And I've been wondering about scholarships for either specific health issues I have or even general ones for people with chronic illness. And I don't know how old you are. I'm only 21, almost 22 but if all else fails I've been thinking I might just have to wait until whatever age it is that you no longer have to count your parent's income on the FAFSA (I'm in the same situation where my parents make too much... nevermind that my health has caused theme extreme financial difficulties and that I have an 18 year old brother who my parents don't even have enough money to send to community college! ugh, I wish FAFSA took all those things into account!) And I also know there a lot of scholarships and aid programs for people who have taken several years off from school and are above a certain age to help them go back to school. So I know it's not ideal if you're really wanting to go back now but it's a future possibility if you can't find any other way to make it work.

Out of curiosity... Who is telling everyone how much to drink and how do they come up with that amount? I'm almost completely dependant on TPN (IV nutrition) due to severe GI dysmotility and getting my fluid level just right has been a challenge and I'm always wondering if more fluid will help. On good days I do drink water took. I get 2.5 liters of fluid in my TPN and they are willing to up it to 3 liters if I want but I have had frequent urination problems for several years so I've been hesitant to up it anymore. But I absolutely do get in at least 3 liters a day with water drinking and TPN fluids combined. I'd be perpetually dehydrated without the TPN though and there's no possible way for me to up my fluids by mouth beyond what I do now. Sometimes I easily get in a solid 8 or more glasses of water a day in addition to the 2.5liters being pumped into my veins. But the whole fluid intake thing has been a struggle and I have no clue exactly what level is right for me. I started off on just over 2 liters of fluid in my TPN. That's the recommended amount of fluid for women in general but now I have the POTS diagnosis and am not sure if more fluids will help or not. So anyway, I realize I'm no help to the rest of you on this issue but I'm just curious... Does more fluid help you in a noticeable way? Before being put on IV nutrition for quite awhile I'd get a few days of dizziness relief if I ended up in the ER for fluids but after awhile it stopped making any real difference. So I guess I'm just questioning what the right level is and just how much of a benefit it is. Because at any time I could request to have my TPN fluids upped to 3liters but I'm not sure if I want to or not.

Ugh, what awful timing! I'm so sorry! I don't have any real tips on how to help you get approved but I'm also in the middle of the process myself right now so I know the stress and extreme frustration along with how badly so many of us NEED to get approved and NEED that money. So I really hope you do get approved soon. And I hope that you are still able to enjoy Christmas in spite of the bad news. Also, if you don't mind me asking- How long did it take them to make their decision? I started the application 7 or 8 months ago and STILL have not gotten a decision although in my case I've been told that all my new diagnosises, hospital stays, etc have caused them to have to take more time on my case. Honestly I am so, so nervous waiting on this! I'm almost to a point where I'm not sure what is worse- hearing that I'm potentially denied or being in limbo like I am now. I have no clue even what my chances are and I also did not apply for the sake of Dysautonomia because I didn't even have a diagnosis then but for other issues... I can say I have made sure to inform them of every single health issue that has popped up in my life, hoping that helps... But I'm completely in the dark on when my decision will be made and what that decision will be. Anyway, I'm really sorry you got denied. And I guess as a last thought here... Have you talked to your doctors about applying and all? Because my plan has been if I have to appeal I have a couple of very supportive specialists (and a specialist's opinion has the greatest weight in their decisions from what I understand) and I'm hoping one or more of them would be willing to write another letter about my issues if it comes to the point of having to appeal. Not sure if it'll make much difference but that's been my own thought on the matter. Any additional letters. test results, anything that you can send in with your appeal will certainly help.

How interesting to see this post. I was literally googling dark circles under eyes yesterday because I saw how awful my eyes looked! (and was having a very bad day- painful period because I have an ovarian cyst, migraine, low bp, etc... didn't even get out of bed all day) I've never really gotten under eye bags ever before until more recently. And I've been highly symptomatic with POTS for about a year now (may have started before then since I ahd a sinus tachycardia diagnosis a few years earlier) but for sure as my POTS has gotten worse these bags have appeared. And I look like I've been punched in the face!

I just saw my primary care doctor who definitely knows NOTHING about POTS and tried to tell me my entire problem is anemia.... Which is annoying. But she wants me to see a hematologist and I just had my iron checked. So hopefully I'll get the anemia aspect of things taken care of soon!

Thanks. I'm just not really sure where else to turn... If I had the money and ability to travel I'd get myself to Mayo Clinic for sure. I might be headed in that direction anyway because of my GI issues too... I ended up in the ER as a result of the Verapamil. Called up my neurologist because I actually was in the bradycardic zone which has NEVER happened to me before and I felt very strange. And I had a blood pressure of 85/50. So I was told to stop taking the Verapamil, obviously and given fluids and had an EKG and all. The neurologist said he'd call me back if they figured out anything else to try me on but I haven't gotten a call back! He told me anything else they put me on would probably lower my blood pressure too. Ugh. ANd now that I'm not on the Verapamil (took the last dose last Friday before ending up in the ER) both my blood pressure and heart rate are all over the place seemingly worse than ever. I have no clue if the Verapamil made things worse or what. And I've been generally hypotensive, more than ever or I get some odd readings. My regular home health nurse (who comes out weekly to draw labs and change the dressing on my pICC line) was off yesterday so a different nurse came out and my blood pressure was 100/50 and she asked if I normally run low. ANd yeah, I do but usually my norm is somewhere closer to 90/60ish give or take a few points and I've never really seen the bottom number so low like that with a normal top number. So I really don't know. One thing I do know is that I have an amazing GI doctor who is really doing all he can to help me overall and I'm thinking about asking him if he knows of anyone in that medical system who works with POTS patients. The neurologist I have been seeing is at the University of Michigan but I'm very unhappy with their neurology department there. So I don't know. I'm kind of in limbo. I have an appointment with my primary care doctor later today too so maybe I'll talk to her.

I've been thinking about getting one and have had nurses and doctors tell me I should I have one. I'm just trying to decide which one to go with and also how on earth to list all of my issues on it! I've heard anyone with drug allergies or on multiple medications should have one. I know I need one because I have a latex allergy in addition to multiple other medication allergies. Then I have a PICC line and for sure in addition to the POTS should list my asthma and probably my GI issues. Honestly I haven't figured out the best way to go about it. No clue how to shorten everything up enough! Does anyone have one of those medical bracelets that are like flash drives that EMS or the ER can plug into a computer to see all your info? I've kind of been considering something like that so it'd be easy to update and so I could have my endless litany of issues on it. But I question how often they honestly plug those things in or not...

I honestly thought feeling sick while riding in the car was just a POTS thing. In fact it's the thing I hate the most about it all because at this point I can't drive at all, have to sit in the front passenger seat, and carry a barf bucket just in case. But then again it could also be anxiety especially since you were going to the dentist. I know I have a long history of anxiety (PTSD, actually) and while I wasn't diagnosed until my teen years I remember as a young child I was ALWAYS complaining of a stomach ache and nausea in the car on the way to school. I was always fine after a little time at school but looking back I know that was anxiety. Although, I hope this doesn't complicate things anymore but... on one hand it'd be easy to say it was anxiety if Ativan helped but ativan is sometimes used to help with nausea anyway. So if the ativan took away the nausea, it could be something other than anxiety. As for the burping when nauseous- happens to me ALL THE TIME! Ever since I developed Gastroparesis (which is most likely related to the autonomic dysfunction) I belch all the darn time. And it does help nausea. At least for a few minutes. Sometimes when I'm really sick I belch for hours uncontrollably for some reason. I've kind of just grown to accept my belching though sometimes it's embarrassing! And I suppose belching helping nausea isn't that weird- It's kind of like when you drink alka seltzer when you have an upset stomach. It'll make you burp and burp and then you usually feel better.

I think I've been anemic for at least 6 months now but today was the first time anyone actually addressed it. My hemoglobin is at 10 so nto low enough for infusions but it's been sitting at 9 or 10 for a long time. I actually ended up in the ER today from the effects of Verapamil (which I'm now not taking) so yesterday morning I also had a heart rate of 50ish and a blood pressure of 85/50 and my neurologist told me to go get checked out. Took me hours to get a ride and I had been loading on salt and as much water as I could drink so I was doing better by the time I got there but they ended up actually drawing attention to my anemia in addition to the dizziness and orthostatic hypotension/ tachycardia diagnosis I left with. And I got one heck of a migraine from stopping that darn Verapamil. But anyway, I'm wondering this... Anemia can obviously worsen POTS and is probably why I've been so especially fatigued and miserable and even more POTS-y in the last 6 months or so. The ER doctor said that since I'm nto low enough to need an infusion they usually just watch people at my level to make sure it doesn't drop any further. And I do get labs drawn every week because I'm on Total parenteral Nutrition for my gastroapresis... but should someone be addressing my anemia? Would that help my POTS symptoms and fatigue? I'm not at all surprised I'm anemic. I ended up very severely malnourished with crazy low B-12 levels and Folic Acid so the anemia was kind of inevitable. But now my B-12 and Folic Acid is at a good place and my nutrition has been improving a lot with TPN though I have a history of anemia even when I was younger and pretty much healthy. So I'm just trying to figure out how much the anemia is effecting me and my POTS too...

You might even try using another finger. For whatever reason when my home health nurse is here my right index finger often gives off scary low reads (like the ones you mentioned) but then if she tries another finger, I'm okay-ish. For some reason I have no problem with the finger readers in the hospital but the ones the home health nurse has, probably much like the one you have, seem to be more glitchy. I get short of breath at around 95. I'm pretty sure I'dbe in the hospital if it got much lower. So chances are you're probably low but perhaps not as low as the readings you're getting.