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jackiemxoxo

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Everything posted by jackiemxoxo

  1. Thanks Robin, I am doing the fecal test tomorrow. I still think I am going to end up being scoped but still hoping for the best.
  2. Update- I went to the GI doc and he wants to scope me. I am not sure if I am going to do it or not but I probably am because he won't treat blindly. He thinks I might have Eosinophilic Esophagitis (allergic esophagitis). Some other possibilities are reflux, ulcers, h. pylori, or bile salt reflux because of no gallbladder. I think he is right about the Allergic Esophagitis because I have a reaction when I eat chicken and I can only eat about 5 things right now and I still am uncomfortable. Man, it really ***** being diagnosed with dysautonomia and then to have these food allergies on top of it seem incomprehensible. I just hope I find something that can make my symptoms better
  3. I have been really symptomatic the past 4 weeks and most of it has to do with GI issues. I am having bad tachycardia and varying blood pressures too but I feel like my GI symptoms are making everything worse. I tested positive for H.pylori through a blood test which seems to be active but they say that blood test can still be positive from old antibodies. I am going to the GI doctor today to see what they say. Most likely will need more testing but I am trying to avoid being scoped because I dont handle anesthesia well. Also, I am nervous to be positive for H.pylori because the triple therapy can bring about c.diff which I had in the past after getting my gall bladder removed. Anyone else had to deal with this?
  4. I was going to suggest online school like previous person mentioned. I just finished my Master's in counseling online which took me 4 years with dysautonomia but I finally got there. Now, I am stuck because I am really symptomatic lately and can't work but still need to finish a 2 year residency to become fully licensed. I am just hoping this is a flare-up and my symptoms start getting better. Anyway, maybe you could teach online after you are done.
  5. I don't really have any suggestions except to see if they can space out the tests/procedures if you need time to recover from them. I hope it all goes well and just focus on the good stuff like you said about getting everything fixed.
  6. yes but it takes me an awfully long time to recover. I do not do well going under. One doctor suggested the use of profofol since I did not do well under general anesthesia but I never ended up having that procedure done. Edited to add- Propofol is apparently bad for POTS. My Endo just told me that it could cause me significant vascular side effects if I have to get scoped.
  7. Thanks Katy, my allergist wont even do any allergy testing because he believes my symptoms are more of an autoimmune response than allergy. I almost wish he would though because I have a lot of GI symptoms like you experienced too. He just gave me allegra and an epi pen. He told me that allegra has the least Central Nervous System involvement and said if I did not tolerate that then we could consider xovair in 6 weeks. I feel like I am stuck though with how to handle all these symptoms.
  8. Hey everyone, I have not written in a while but I became symptomatic recently after developing hives. I got sick 5 years ago but have slowly recovered. Now, I got hives 2 weeks ago and was on a regiment of prednisone, benadryl and eventually claritin. All the medications seem to make my heart rate worse so i tapered off of them. I saw an allergist who thinks it is an autoimmune response to a virus I probably had in childhood. My dysautonomia is seeming to get worse and I keep getting the hives at night. My heart rate and blood pressure are elevated when I sit or stand. They think my dysautonomia is viral in origin so I am wondering if this is a relapse of sorts. Anyone else deal with hives making their symptoms worse? What could you tolerate as an antihistamine?
  9. It's been awhile since I have been on this board because I have been busy with a 3month old and grad school online and have been doing fairly well for the most part but I was browsing and came across your story. My onset of dysautonomia was pretty sudden (3 years ago) and I ended up in the hospital like you with a myriad of tests. They think my cause was viral but who really knows. The one thing I still struggle with is GI issues. My only suggestions would be have you been checked for H.pylori? This can cause a lot of acid but you probably have been tested with the endoscopy and GI series. When I first got sick my major complaints were trouble eating and rapid heart rate. I got so bad that i had gastroparesis and could not eat anything but ensure for 3 months but it got better. Now I still struggle with IBS and acid issues which I have never found a good regimen for. Also, I would make sure you are taking good vitamins and keeping up with Vitamin D (if youre deficient), this has helped me and you said your potassium was low a lot which may mean your stomach is not absorbing nutrients well. Also, a probiotic like florastor helped me replace the good gut flora in my stomach which can help balance out your system. I think its good that you are being tested for those above. I have been tested for those along with numerous other ones such as porphyria, lupus, amyloidosis, etc. (which all thankfully came back negative) I hope that you find some answers and get better. A lot of it just takes time and it is good to keep up with exercise but rest is also extremely important in order for your system to recover.
  10. I think your symptoms are related to the dysautonomia, they sound very familiar. I had gastroparesis 3 years ago but have since recovered. I still battle with GI symptoms and the burning sensation is really painful sometimes. I think it is related to acid overproduction and it helps to take zantac or something that protects your stomach. Especially if you are not eating much. Sometimes I take mylanta to help with immediate pain. When I had an endoscopy it showed bad gastritis and hiatal hernia. I think protecting your stomach from the acid is key to helping it heal and your appetite might possibly return more then. And hopefully they will check you for H.pylori during the endoscopy just in case you have it so it can be treated.
  11. I agree with the meal replacement shakes and eating smaller meals more frequently. Also, have you tried a probiotic? Florastor helped me with my stomach issues if you think its a possible imbalance in gut flora.. just a thought.
  12. Hi, I just wanted to say that I delivered a month ago and was induced because of high blood pressure. It was only 3 days before my due date but I was nervous it was not going to go well. Mine was successful. I ended up with an epidural at 2 cm because the pitocin made the contractions so painful (they titrated the dose, my blood pressure dropped and they brought it back up with ephedrine (or whatever they use) and although my heart rate varied through the labor I was able to push her out successfully (she was 9lbs 5 oz.) The whole thing lasted about 10 hours which is not bad for a first birth. I was 2cm and 70% effaced going in and I think this is important. I would ask your doctor before the induction how favorable you are to having a vaginal birth. They have scores (called a bishop score) which can tell how favorable you will be. I wanted to avoid a c-section because I do not recover from surgery well and it makes my dysautomia extremely worse. Well, I just wanted to add my experience that inductions can be successful so don't give up hope if it is the way to go for you! Good luck!
  13. yes, I got sick 3 years ago with autonomic symptoms out of nowhere and after ruling everything out, they think mine was viral. However, i never felt "sick" with an illness before it came on, I was just sitting in the movie theater and my heart started racing and then symptoms got worse for the next couple months from there. I have gradually gotten better over the past few years and every time I do feel bad my doctor thinks its a "flare up" from the virus... I don't know what type of POTS I have either cause my doctor always calls it autonomic neuropathy. I think it is important to explore causes though especially if you are still really incapacitated cause their might be specific treatments for that cause. Also, I think it is always hard to tell whether it is viral or has an autoimmune component.
  14. I have heard great things about Dr. Sica (a nephrologist) at VCU who is familiar with POTS and treating symptoms http://www.medschool.vcu.edu/expertise/detail.html?id=183 Dr. Chemali is also good and has a full autonomic lab in Norfolk, VA
  15. Hello, congrats on expecting! I don't have any instructions but wanted to offer my experience. I just had my little one (12/20/2012) and my bp dropped with the epidural as well and they gave me ephedrine and it went right back up. I even met with an anesthesiologist beforehand to discuss dysautonomia and what could happen. They recommended slowly titrating the dose instead of giving a large bolus dose (which is normal) to see how I'd react. I think this is a good way to approach it but it can still cause a drop in bp. Most anesthesiologists will meet with you during pregnancy if you ask your OB for a referral and then you could see what they could offer.
  16. I agree with the person who posted above. It has been years since I have taken wellbutrin but it was best taken in the morning with the ssri at night.
  17. Congrats!!! So exciting!! My brother is in his third year and though its tough, he is really enjoying it.
  18. I used to drink coffee and caffeine all the time. After becoming sick almost 3 years ago I gave it up and can no longer due caffeine because it makes my heart rate go up and I get shaky/jittery. I used to be able to tolerate sodas but those eventually did the same thing. After cutting out caffeine and adjusting to it (about 2 years now) I feel immensely better and don't miss it anymore. I can still tolerate hot chocolate if im craving something warm... You have to find out what works for you.. maybe decaf? half-caff? something else?
  19. Hello, I actually live in Virginia Beach and I have seen Dr. Chemali once and he was helpful but I didn't want to get any testing done at the time because I am currently pregnant and in stable condition. I know he has a full autonomic lab though and is a good doctor for finding out possible causes. If you are looking more for treatment then I have heard that Dr. Sica at MCV in Richmond is the one to go to. It depends on what you're looking for but I know others who are very pleased with Dr. Chemali. If you want more information about him and are on FB I would suggest posing this question on there to this group. https://www.facebook.com/groups/412465042132034/ Hope this helps!
  20. I agree with everyone else saying malabsorption, the same thing happened to me before. Eventually it went up then down again and now I am on supplements again. I can't complain though because I def feel a difference in energy when I take the vitamin d. You could try asking your doctor to switch the forms of the vitamin d they are giving you and maybe a different brand or something would work better.
  21. Congrats!! I am currently on week 36 and still doing well. Although I can't answer your question because I stopped beta blockers a year before coming pregnant because they were dropping me too low. I can say from what I experienced so far that pregnancy has made a lot better. First trimester for me was the worse with tachycardia and severe fatigue, second trimester was amazing and a pleasure, and this third trimester is just uncomfortable and my blood pressure is varying a lot but I can't complain too much. Good luck on finding what works for you!
  22. Its been awhile since i was on inderal/propanolol but if you're sensitive to medications like I am then I would do the low dose like your doctor suggested. I was able to just do 5 mg four times a day and it be effective but I think at one point I even did 2.5... I was also allergic to two previous beta blockers so was nervous to start that one but I seem to tolerate it the best. My only suggestion would be careful not to forget doses cause you could end up with rebound tachycardia. I think its great that your doctor is being careful not to start you on too much, when I first started on it my doctor suggested 40 mg 2x a day cause my heart rate was so high but that landed me in the ER cause obviously my body could not tolerate it.
  23. Elena, when I first got sick I tried Paxil and Lexapro. They both seemed to help retrain my autonomic system in a sense but eventually stopped working or the side effects were too much left me feeling restless. Now, im currently not taking anything but if i were to get bad again I would reconsider these but I think its really an individual thing of which one works for you. Also, what I did want to mention is that I am currently 31 weeks pregnant and my GI symptoms have never been better. Before getting pregnant, IBS and GERD were probably my two worst symptoms (well besides tachycardia which remains but is tolerable) sometimes unbearable that I didn't want to leave the house to go do stuff. Pregnancy changed all of that and I am not sure why but it has really been a plus. I just thought I'd throw that out there because you mentioned you were thinking of having kids soon. Whatever you decide, I hope you find something that works for you and mention your concerns to your doctor because you may find a solution that is best for all your needs.
  24. I had plasmapheresis back in 2010 when I first got sick because the doctors thought it might be autoimmune related and a viral attack. It's debatable about how much it really helped me but my mom swears I got better from it. The doctors didn't check my calcium levels at the time so that was a big mistake because it left me feeling awful from that but otherwise it can't really hurt. Like someone else previously mentioned, the sooner the treatment the better cause of the reversal of damage and such. However, IVIG is used for a lot of other reasons and the one you mentioned might help if the doctors think it can. I know its a lot easier to administer than plasmapheresis but there is a higher chance of rejection or allergic reaction (because the donor amount is higher in IVIG than plasmapheresis) so make sure you read up on those and look for any signs your daughter might be having to it.
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