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Tzipora

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  1. 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?
  2. 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!
  3. 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?
  4. 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...
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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!
  10. 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!
  11. 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.
  12. 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...
  13. 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.
  14. 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...
  15. 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.
  16. I have some kind of benign spot on my liver. It was incorrectly called fatty liver and it's been there for quite some time and no one knows what it is. I also have elevated liver enzymes fairly often. I'm now dependent on Total Parenteral Nutrition (IV nutrition) because of my severe GI dysmotility issues and that can take a toll on the liver. Found out my liver enzymes have been quite out of whack from that but are going back down now. But had elevated liver enzymes before being put on the TPN. And then, I also suffered from severe malnutrition which really messed up my liver undoubtedly. So, very interesting. I actually can say for a fact that when I was malnourished I had orthostatic hypotension and now I do not anymore, not even during the tilt table test (and I lasted the entire time without fainting). So there probably is something to that but then again malnutrition obviously had a devastating effect on my entire body so it might not be a liver thing specifically in my case. I can say that things got worse and worse with my POTS as my nutrition got worse.
  17. I posted recently about starting Verapamil and someone did say it and other CCBs can make POTS worse. Is this true? Can anyone point me to any links or studies on it? I'm supposed to switch to taking the Verapmil twice a day tomorrow and I kind of do want to at least try it. The very first day I took Verapamil was terrible and it lowered my blood pressure quite a bit. But now I actually seem to be running higher than my norm (which puts me more t a "normal" blood pressure since I tend to run low) And now I've heard that POTS patients can end up getting increased blood pressure from CCBs or BBs. But my bigger thing is I'm either running more tachy or just noticing it more and having more palpitations. I can just roll over in bed and feel my heart racing. Tonight I was running tachy and having palpitations and all out shaking for a half hour. I went out to the store about an hour after taking the Verapamil and that's what caused the shaking and all. Now I tend to have a lot of problems shopping or anything but have never been to the point where I was shaking like this and I guess was extra palpitation-y. Because by the time I sat down and tried to calm down I was about 120bpm but felt as if my heart was way faster (When I was first diagnosed with sinus tachycardia I'd be 130 and not even know it or feel different...) So I don't know really. I don't feel too good though. In general I feel like I was adjusting better to the Verapamil until tonight and going to the store but for sure I'm at least as tachy as before so I guess I'm willing to try upping the dose as I'm supposed to because I figure I'll either know for sure if it makes me more tachy or maybe, just maybe it'll make me less tachy as it's supposed to? I guess I'm questioning too- how long to try a med before you give up on it because of side effects? I'm having to lay down so much more since taking the Verapamil and I'm not even sure if it's a blood pressure thing, a tachy thing, or just general fatigue from the medication. I was supposed to take 20MG at night for 4 days, then 20MG twice a day for 4 days, then go to 20MG 3x a day for 4 days and call my neurologist to discuss how it was working. Maybe I should be calling sooner? It's my first POTS med so far so I suppose there's got to be other options so maybe I shouldn't be suffering with this? I just don't want to give up on it too soon if the side effects will decrease over time and it might work. Sorry to ramble. I'm just so very unsure of what to think of the Verapamil nor do I know if the Verapamil is really making me any worse or if it's just that it's not really doing anything.
  18. Because my diagnosis is still new I haven't had anyone give up on my POTS yet (but I did have my neurologist tell me he's sure I have other neuro issues but that they won't have the capacity to run the tests they want for another 6-9 months when their new lab is done being built) but I have had a lot of doctors basically give up on me. Most recently my gynecologist but generally it's GI doctors. I even end up in the hospital with GI issues and doctors come around and tell me there's nothing left, even used the term "end of the line"... But with that said the fact that your doctors are trying to get you to Mayo is amazing. Too many doctors like to think they know it all and wouldn't think of sending patients elsewhere! All the doctors who have given up on me never even mention sending me elsewhere. Instead I'm in the dark trying to figure out where else to go and fearing the next doctor will just give up too. So I know it's totally frustrating but it's a GOOD thing they are wanting you to go to Mayo and are trying to help make that happen!
  19. To my knowledge I can't think of nor do I know of any one else with neurological issues in my family. The closest thing at all i that my my mom has hypertension but I always run low... So I'm not really sure if there's any connection there. Except that oh hey, my mom actually got diagnosed with high blood pressure when she was pregnant with me but she didn't start needing meds for it until just a few years ago. Although there ARE autoimmune things in my family- in particular thyroid disorders and RA and also diabetes. So if there is an autoimmune aspect to POTS then I can see how, especially since different autoimmune things run on each side of my family that maybe genetics mixed weird to give me the issues I have. I don't know. I have family members who are always trying to figure out where on earth all my issues came from actually!
  20. So I had my first dose last night... 20MG and I feel AWFUL! My blood pressure seems about where it usually is and I don't totally trust my machine though. My heart rate is maybe lower though I'm palpitationy or not quite palpitations maybe. My heart feels "odd". And I am so freaking miserably fatigued. It's taken me all day to get out of bed and I think I'm going to just lay back down soon. I feel MISERABLE. And extra nauseous though I'm not sure if that's the Verapamil or that I ate last night or what. Basically according to my blood pressure monitor, I'm running a little bit lower than I was last night before taking the Verapamil but not really unusually low and my pulse has been up and down but I feel so super symptomatic it makes me want to cry. I'm not sure whether or not to take another dose tonight or not. Monday morning I'm supposed to have GI testing but if I feel like this I'm going to have cancel and Tuesday I have a doctors appointment. But I don't know how I can even get out of the house, or even get dressed feeling like I do right now. I don't know if I should give it a few more days or what but I can't even imagine upping my dose in 3 days. And like I said, I just want to cry, I feel so symptomatic and just lifeless. And so tired and fatigued. It's like my normal symptoms magnified. I'm trying to drink pedialyte and half considering eating straight salt in some desperate attempt to feel better. I know I've read that many of us are extra sensitive to medications and I think that I am. I've had doctors refuse to even believe me when I have severe reactions to low doses of medications so I don't know. I wish I could prove that my blood pressure or something was as off as it feels so I could have proof that the Verapamil is making me so miserable. I'm really hating this.
  21. I get that for sure. It was my severe gastroparesis that lead my doctor to suspect Dysautonomia so for me there is for sure a major connection between GI stuff and POTS...although I was recently told that the severity of my Gastroparesis isn't what they'd normally connect to POTS and they think I have more autonomic/nerve issues they're unable to test for at this time at the research hospital I'm being treated at. Actually I've only for sure fainted once or maybe multiple times during this one episode... I ruptured an ovarian cyst and ended up hospitalized because they were fearing appendicitis and also took days to figure out it was a ruptured cyst even though a similar but less severe episode had just occured a few weeks beforehand that was definitely a ruptured ovarian cyst. So anyway first I started throwing up violently and absolutely uncontrollably (nothing at all works for my nausea and vomiting) and my heart rate was soaring and while I normally am chronically constipated I had had to drink CT contrast which ended up giving me diarrhea at the same time as the vomiting. I was so faint and terrified I had to use a bedpan, while vomiting into a bucket! (sorry if that is way TMI) And somewhere in there I fainted at least once, maybe more. Most terrifying and MISERABLE experience ever. The fainting and feeling faint actually got better after the diarrhea even though I continued to vomit the rest of the day. And in milder instances I have trouble with feeling faint both when I vomit and when I'm having or attempting to have BMs. Actually when I'm very constipated I tend to get very tachy while trying to go also but the same seems to be true if my body veers towards the other extreme. And like I said, it also happens if I vomit. Whenever I vomit I end up laying on the bathroom floor miserable and afraid to move.
  22. Thank you, both of you. I did call my neurologist the morning after I posted this. Turns out they did in fact "overlook" my asthma which is surprising since my asthma meds were listed right there and you'd think they'd check what other meds I was on before prescribing anything and that one would've been very obvious! But they agreed it was a bad idea and no beta blockers for me! They decided to put me on Verapamil, a calcium channel blocker. I'm nervous about taking this one and trying my first dose tonight but even the pharmacist assured me it shouldn't cause any asthma problems!
  23. Thanks! And so interesting about it's potential to RAISE heart rates... Oy, obviously the last thing I want! I picked up my script today but I'm thinking I'll take my first dose tomorrow night instead of tonight because I am feeling awful tonight. Actually I have a splitting headache so I'd be curious to see if it helped with my migraines and headaches any. I was recently prescribed Imetrix for my migraines and had a really nasty reaction to it, with severe neck and chest pain so never taking that again! Still nervous about the Verapamil too so I'm thinking I'll wait a night for sure. I'm to take 20MGs at night for 4 days, then twice a day for 4 days and then 3 times a day for 4 days and call the doctor at that point. Actually I'm confused since I have 40MG pills and thought I was supposed to up it to 40MG at a time at some point so I guess I need to call and clarify this too... And find my pill slicer! I just hope it either works or at the very least doesn't make things any worse.
  24. After my doctors realized they overlooked my asthma when attempting to put me on a BB, they decided I should try Verapamil. It will be the very first thing I've taken for POTS and I'm a bit nervous about it. I can't pick up the prescription until at least tomorrow (because I need a ride and can't drive) and I'm thinking I'll start taking it tomorrow night. I was told I'm to start taking a very low dose once a day at night for the first 4 days because of the potential side effects (not that the doctor really elaborated on what they were!). My blood pressure runs pretty low as it is. In the neurology office I was 94/60 so that is their main concern from their standpoint as far as side effects. I'm nervous though because I have a number of other serious health issues and I'm way too aware of how medications that are supposed to help with one thing can make other things worse. I'm reading nausea and constipation are common side effects of Verapamil.... I have severe Gastroparesis and am in the process of being tested for colon inertia and small bowel dysmotility because I also have constipation problems as it is. And I am chronically nauseous, all the time. So admittedly the potential for those side effects concerns me some. But anyway, I'm just wondering if there's anything else I should know about Verapamil or CCBs in general since I really know nothing about them and wondering if other people out there have experience with this drug or other CCBs and could share their experiences. Thanks.
  25. I've been dizzy constantly since last March, right before my 21st birthday actually. I'm completely unable to drive at this point and have a rough time riding in the car too. It's not vertigo and it's there all the time but movement makes it even worse. I HATE it! I only just got diagnosed so I am hoping maybe something will help but who knows... I hate it. I feel like I can't do anything at all anymore. As I type right now I feel like my head is so lost in a cloud. Makes me feel "stupid". I'm due for an eye exam I suppose but I don't even know if it's worth it because my real vision troubles are not the kind of thing a new prescription is going to help. Before it became constant I would sporadically go through spells of wonky vision. Now my vision varies and the severity of the dizziness varies at times too but the dizziness is ALWAYS there. I've started waking up in the middle of the night with it really bad sometimes too.
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