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pamela

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Everything posted by pamela

  1. I did not think there were any others out there with both pots, and protein S or clots. I too have a filter, take 12.5 mg of coumadin. I take digitek and Coreg. Whats the Pro Amatine do? I have a docs appt soon (several actually) and I like to be prepared. LInda Joy I have a cousin in MAryland named Linda Joy. That's kind of weird.
  2. I have been on Wafarin for three years after a PE and blood clots in my legs due to LOw proteins S deficiency. I was diagnosed with Pots and OI may 2005. So I really don't know except my pots is worse when my INR is high ( above 3.5). But the symptoms of POTS can also be the same as a stroke or brain annyurism ( Ican't type or spell today). I just found out that I have had a stroke in the paast 6 months andd it caused some damage to the brain and I had no clue. I get POTSY often and migraines too. Be caareful and get your INR regulated.
  3. I have been in the hospital for 8 days out of the last 20. The first time for a pulse if above 120 that would spike to 180 whenever moved around. My BP was low also at the time. They Hydrated me and treated me with nitrates for the arrythmia and did a echo. Once my ekgs quit looking fenny after 3 days they released me. This las time Mp left arm and chest statrted hurting , I was faint, nauseated and could not speak. My work called an ambulance and I went to the hospital where they did a dophedimine (drug) stress test. That produced the pain and other symptoms and ekg changes and the echo showed a aarterial spasm and irregularity of the hearts contraaction. So they did a catherization that was non remarkable (normal arteries). Out of all of this my pulse stayed low and irregular for days and ny Bp was low and lower.. So more fluids and nitroglycerin,morphine, heart meds and then they released me. Next they want a EPS study! Iused to be tachy and not have as many irregular heart rates but I go back and forth. Any one else have these fluxes of bradys and tachys? They discovered a right bundle branch block but that is supposedly no big deal with normal peaople. I guess if is common to have it and not have symptoms? Any one else have this? The docs say that this is causing the PVS and skips that I feel and that id could be causing the tachy and bradys too. I feel prettty confused. I mean is this why I have POTS and OI or this a symptom caaused by the nerological side of POTS ans OI?
  4. Hi! rI have a rare blood condition called low protein s deficiency. Basically the deficiency causes my blood to clot at a faster rate. I ahve had DVT's pulmonary embolisms and am on blood thinners for life. I only found this out at 31yrs old after I was diagnosed with a large amounts of Pulmonary embolisms. So pleas have your doctor check your clotting factors and or clotting time. the normal clotting times are o.k. for people without a deficiency in protein c or s but if you have eiyther disorder you have to keep your blood thinner. If anyone in your family has had blood clots or P.E.'s or strokes you are at risk too and if you take birthcontrol or smoke it is really risky. Please see your doc. They may think you are paronoid but POTS people aren't very active and often dehydrate and that can both couse clots to form in your legs or arms .Good luck!
  5. Talk about a mixed blessing... I had to go to the Hospital for a sudden intense migrain and they gave me shots for pain aand nausea. We did not discuss pots or any suxh and I was released a couple hours later. It has been 3 days and I still have a mild to annoying headache, brain fog, clumsiness, sensitivity to everything..bloated and all the other potsy stuff. So the migraine was a precluding symptom....I just stareteda job as a groomer for dogs after being unable to work for over a year. For about 4 mos my POTS and OI have been manageable and after 3 straight days on my feet my symptoms are back and all I can do is hold on. So I thought I would get on the computer to see if anyone else had these sudden migraines and prolonged symptoms. Its sad to see the answer is YES but at the same time is reassuring to not be alone.
  6. Just when things were going well..Heartrate stable, BP o.k., working out, meds doing great..No brain fog for weeks..BOOM!! I aid the other day when asked how I was doing? Great I really feel a lot better. 24hours later I was in the ER. My coreg and digitek got to working a little to well and I ended up severly Braadycardic and Low BP. I could not think, walk straight, my head was buzzing, tingiling, the world was spinning and I had to tell myself to breathe. THey kept me at the hospital, said to get a Eltrophysiology Study as soon as possible, consider new meds and a pacemaker, and sent me home to be seen by my doc on Wedsday. Now I am still foggy and can't stand up for long, the world still spins and I am Tachy again but I am enjoying the buzzy feeling..HA HA. No gym till I get to the cardiologist and that really *****. The good news is I lost 5lbs somewhere between Weds and Thursday after stopping my meds and getting all those fluids. I am hiwever very thankful for the good weeks/months that I had.
  7. Hey! I was in the army too. My husband is active currently serving as a recruiter but we are normally at Bragg. Please email me at pskildum@bellsouth.net We are seeing civillian docs here in the Charlotte NC area and half of them have never heard of Dysautomnia or POTS. I am so worried to be laughed at next year when we get to the military hospitals. (Sorry if the typing is messed up but I just got out of the hospital for Bradycardia and Low BP). I am sorrythat you are going through so much. Believe my I understand> My big strong Paratrooper does not understand any of this and he hates to hear about it because they can't fix me. Sometimes I think he wonders if I a crazy. Then when I end up in the hospital it scares him so bad that it breaks my heart. I have had (dignosed) POTS and OI since MAy 2005 and it has been crazy. Now the docs are saying that I have Mitral VAlve Prolapse Syndrome (moderate to severe), and a bundle brach block, and all of that affects the POTS and OI. Any way I hope you get this soon! HAng in there and be proud!
  8. I feel exhausted after fluids but its from getting up to pee so many times. However you may want to check your Kidneys, urine, aand blood sugar to make sure your systom is not getting a fluid overload.
  9. I read this to a while back since they send their newsletter to my email. Did you read the ones they had on Syncope. I think it was in the end of May. Their newsletter is fantastic. Good articles about MVP,EPS, and other heart related terms.
  10. HI! I have just got back from a trip and stay at the Hospital here in N.C. I just went in for the same symptoms. Before strting coreg and digitek for arrythmias and tachy's I was all out of wack. Then for the past 6 mos I have been feeling a lot better. Tuesday Am I tried to get up and drive my husband to work but he could'ne wake me up. I thought I was just extremely tired. 3 hours later I made my way to the kitcken stumbiling and managed to take my pulse. After walking and standing there my pulse was still 54. I felt like I was dying. Shaky, I felt like I was melting to the floor. I sat down and retook my vitals.. At 2 min my pulse was 40 and my BP was 70/54. We wwent to the Er and they said my med combination was too strong and now I have to restart everything slowly. Once they got me up to 60 beats per minute and my BP in the 100's they let me go. The nurses were really worried all night and kept readjusting my leads on my monitor because they thought it was the machine. The moral to the story.. I got to start taking a moment to listen to my body especially if things just do not feel right. The week before I noticed a big change in my heartrate while working out, I couldn't get the beats over 120 no matter how hard I tried. I would push a little more and get out of breath and light headed but my heart monitor was still showing 112-117 after 20 minutes of intense work out. I had called the doc, got a nurse and all she said was that my meds were doing what they were suppose to. What the had did was reach toxic levels. Good luck to everyone
  11. 10 years ago the military docs diagnosed me with vertigo and I had a med for that. Then Last May I found out I have POTS. Now my meds work for the POTS but my vertigo still comes and goes. Hang in there everyone.
  12. I have had a pretty constant headache since valentines and it is severe at times. The only tthing I ha changed was I had stopped my pottasium. I restarted my prescription and am going to have it checked Monday since I still feel dizzy.
  13. My old doc in charlotte NC prescribed Metadate(ritalin) for POTS assuming that it would help with the fatigue and low BP since Nadalol was bringing me way down. The metadate worked for lack of enrergy for about two weeks but I was tachy and skipping heartbeats. After about two weeks on the med I began falling asleep standing,sitting, no matter what. And I went from having no appetite to eating my arms off. THe doc said we could try ephedra or pseudophedrine.. I said no thanks. My cardio doc had me do a hholter test and a stress test and then prescribed Coreg and digitek since my arrythmias never recovered. Beware of uppers like pseudophedrine,caffine etc. THey can make yoour cardiio symptoms worse and cause damage.
  14. Hi and Welcome! I don't work out side of the home and understand your insurance difficulties. I am on beta blockers and antiarrythmics and just recently started looking into a more homeopathic approach. My dysautomnia (Pots,NCS,orthostatic Hypotension and such) keeps from a regular job and interferes with my sleep so I stay at home. Good luck and feel free to email anytime!
  15. I hate to cut back on the excersise since it takes so much motivation to try any amount. The funny thing is I get that runners high typr feeling eearly and then I know I have over done it. For the most part however, I can regulate the amount of cardiac output and keep it on the low side thanks to the Coreg. The Digitek medicine is suppose to keep me from getting skippy in my pulse. It works pretty good until I started excersising. I will probably have to increase that dosage. The only excersises that do not aggrevate my symptoms to much are the stationary bike and light floor excersises. Lifting weights is a No No, trust me, it was ugly. Now I wear 5lb weights on my legs to help build the muscles up. My appt for Cardio is not until March too. Yet there is a internist here that takes my insurance but is not enrolled in the Tri care prime type of military ins, and he has several patients with our problems and I can't see him either. If my current (baad man) internist would refer me the insurance will pay for the visit but so far he has not sent the referal. The military does not even acknowledge these conditions yet sso I get a lot of blank stares when I mention autonomic disfunctions etc..
  16. I too had problems dialating even though with my son my wter broke first after 6 hours I still was not dialating. The used some gell stuff and heavy pitocin. 10 years lateer with my daughter they scheduled my induction for bleeding issues and I had to be gelled, pitocin, mor pitocin, water broke for me and once again it took me over 28 hours. Who knows? But it does sound as if our bodies automatic birth giving response is screwed up right along with the rest of the,. And controlled breathing really made me light headed.
  17. I am having the same weight gain problem. I lost weight in June after gaining 16lbs off of 1 week of Florinef. That was my first Pots med. Stopped it quickly. I had a bad spell with my POts that landed me in Cardiac care unit/ICU where they helped diagnose me with POTS and dysautomnia, the next 2 weeks I lost that weight and was back to my postpartum 150lbs. I started Coreg and digitek in November and am back uupp to169. Frankly it really makes me mad and so very frustrated. Now that I can move around normally with out it feeling like I am running a race everything that I eat is adding weight and I really am having attitude problems with it. What can we do? Who can help? ..
  18. This is new for me. I have started to increase my excersising since the holidays. I started out slow by walking a little more everyday (1/4 mile then to 1 mile ) Now I do a 1mile walk three times a week. Two weeks ago I added 10 min increased to 25min of stationary bike. This past Saturday I went to the gym and did fine except I was Tachy early in the workout then I started skipping heartbeats. After the workout I was light headed and my head really hurt. I drank water and stuff really well all day. My BP/heartrate machine would not register my Bp and I had problems getting my heartrate down below 110 for about eight hours. Sunday my pressure was up to 90/60 (nevver got up to the 100's) and my pulse wass down to the ninetys as long as I did not get up. Neurologically I haad some numbness in the feet and hands, my coordination was off and was light headed for 24-36 hours. Today I felt better and workedout on my Giselle machine which requriress me to stand and swing my legs back and forth. My heartrate was not to high (I kept it down below 145). Now 2 hours later I am still tachy and my BP is low and all the neuro symptoms are back (as my tyyping will attest to tthe faact). Is there any one with the same problems and what has your doc said. Mp primary doc will not see me for dysautonomia problems and has me going to a caardio doc. Getting an appt there w/o a medical emergency is very difficult. Meanwhile I have to get to moving to drop my post baby fat and holiday weight. No fare that I didn't even eat to much and still gained weight.
  19. I did not know that breathing abnormalities were a symptom. Logically it makes sense since brathhhing is a automatic (autonomic) function. Since we have a (or several) types of dysautonomia hyperventalating, breathing to slow, and feeling breathless would be a symptom. I am very awaare of my breathing when I lie flat or if I am tryying to relax. I thought I was just odd. I had a horrible time with breathiing to shallow and to slow since my late 20's and seem to over breathe when I am nervous. Durring a asthma attack I try to regulate my breathing; then as I am coming out of it I hyperventilate every time. Distraction works and in a medical situation I try to use a focul point. The worse thing is that during sedattion for bronchoscopy, endoscopy, and colosccopy, I had trouble breathing and all three times I ended up being put under general anesthesia. Then I have to stay longer on 02 through recovery and for 24hours because my body forgets to breathe. I am typing so many mistakes that I am going to apologize and quit. Hang in there everyone and remember to relax and breathe deep. Oh, I also had trouble during my tilt since the lady was telling me when to breathe I felt as if I was being smothered, my mom said that I woke upp fome fainting saying that I could nit breathe and that my oxegyn level did drop to 89%, while my bp was 58/30 and my pulse was 145.
  20. Iam so glad to have caught this topic. Since being diagnosed may 2005 with POTS and all the orthostatic hypotension stuff my body has really been giving me fits. No matter how little I eat I seem to be gaining weight. I had a baby in Feb 2005 after gaining 36lbs, I lost fro 186 to 156 and was holding prttey steady till August 2005. Then I noticed one week I would be 150 then the next 159 and thhis continued till December 05. Now I am at 165 and have been wathching mt caolories and increasing my fruits and still my weight is out of control. I seem to be gaining weight. After hearing that I am not imagining this I am gooiing to make another appt with my doctor to see if he will help me work through this and get back in control. I added ankle weights and have started riding my stationary bike 5 days a week and I am up to 25 min at a time. I just feel so hopeless. thanks for listening! Keep the info coming
  21. I know I am late reading this topic but I had to vent right along... I cannot fall asleep and then stay asleep. I have restless leg/arm syndrome, along with all this other dysautomnia stuff and it really *****. After two or three days I am crying at night because I can't get to sleep. I use to snuggle up with my new hsuband but now I can't lay still long enough to get comfortable. Nothing ever helps everytime, some evenings what worked the day before does not work that time. I don't have a sleep med YET! I had the Ambien in the hosptital and it never worked. Then they gave me Atavan and I guess that worked pretty wells since I don't remember a whole lot about theat stay... Anyway, What can we do? The more meds we take the more there effects may interact with others and can make the sleeplessness worse. Then there is the narcalepsy during the day. What is up with that? Sometimes I get so sleepy that I can't stand. That is when I find my BP has dropped. Curious note, at that time you can't find a cartoid pulse on one side. A doppler study revealed that upon standing the arterycolapses to about 60%. My Cardiologist says that is nomal with us. So please get some sleep or try to relax. A big chunk of Dark Chocolate and a 1/2 glass of wine works just as well as some prescriptions according to an article in WEB MD. It worked last night and the nigt before. Since is Chritmas I got plenty of Chocolate. Good night
  22. 12 or 13 years old I had a bad bout of it that included 3 weeks of bed rest and some liver damage that almost kept me from takimg the pill. I have been told that the effects and some of the symptoms reaccur and never go away even though you are no longer actively infected or cannot pass it on. I had it as a young teenager and am 33 now.
  23. Hi ther! I am new to the upper GI problems. I never had heartburn until today unless I was pregnant, and I noticed 3 days ago that I have started choking on my larger pills and not being able to swollow stuff straight down . I was looking for more info on the swollowing problems and which heartburm med is the preferred. I don't regulary take calcium but I know I need to. What are the suggestions? What do you take for the heartburn?
  24. Gracie You ARE SOO FUNNY! My dust bunnies have names and my dogs are there best friends.
  25. Ernie, thank you so much for opening up to us here. We are all in a precarious position of not knowing what are future might bring. However, you are on this site for a reason: to share, to comfofrt, to scream, to cry, find answers, find friends, and be a blessing to others. Please staty strong and I will keep you in my thoughts. Email me anytime you need to talk.
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