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jackiemxoxo

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Everything posted by jackiemxoxo

  1. So I am almost 7 months pregnant and I know the doctors are going to recommend a flu shot but I do not know if I am going to get one. I have not had one for the past 2 years since I got sick because I am afraid it will make POTS symptoms worse. I used to get them all the time no problem but now am very apprehensive. Has anyone had a flu shot since they have been sick and what were your reactions? Did it make you more tachy, lightheaded, etc?
  2. This sounds like the start of possible gastroparesis to me. Have you considered going to a GI and getting a gastric emptying study? When my GI symptoms started it was very painful and almost felt like food was getting stuck near my sternum. Eventually I was just drinking ensure 3 times a day for 2 months until it subsided and eventually just got better. I would get it checked out though cause a GI doctor might be able to give you medication to help or test you with gastric emptying or endoscopy. Feel better!
  3. Just because ya'll are talking about gall bladder surgery... When I first got sick to the point of gastroparesis, they thought it was my gallbladder because it was only working at 17%. I got it removed and I really wish I didn't. There was no stones.. nothing wrong.. just a little inflammation. My neuroendocrinologist said later that it probably was not functioning right at the time because of the dysautonomia. My GI symptoms were much worse without a gallbladder and the surgery slowed everything in my body down which took a long time to recover from. I know it can help some people but its not always the case for everyone. My only advice to anyone being consulted for the surgery is do your research first cause once you see the surgeon, they are pretty much gonna convince you to remove it.
  4. Awesome to hear! I agree that time does help as well but patience is a virtue.
  5. Elena, My sister is epileptic although she has not had a seizure in 15 years (thank god) she is now 32 and has been on keppra for awhile now. She was previously on stronger medications like phenobarbitol and tegretol to control the epilepsy but switched to keppra because she wanted to conceive. I just wanted to let you know that she took it during the duration of her pregnancy and her son (now 1 year) has no problems and was born healthy. They did monitor his heart and other things during pregnancy just to make sure because she was on the drug. I know there isnt much research on that drug and it can affect different pregnancies in different ways but I thought you'd like to hear a positive scenario of how hers turned out. As for me, I am currently 25 weeks pregnant and on no medication so I do not know how it will affect my baby but this pregnancy has been good so far. My doctor was encouraging about me getting pregnant and I just make sure I keep all my OB's up to date on dysautonomia because I do not know how I am going to react during delivery. My heart rate goes high but my bp is stable. I have sjogrens so they are monitoring the babys heart. I have felt pretty good during this second trimester and my GI symptoms have gotten remarkably better in pregnancy. Also, I think the prenatal vitamins make me feel better as well. I was nervous about getting pregnant as well but really wanted to start a family of my own and was feeling better in terms of where my illness is so I took the risk because I have lots of family around to help while my husband and I are still stationed here. I wish you the best of luck with your choices and decisions!
  6. I think xanax can effect everyone differently. When I took it, it made me more tachy and did not help. The doctor at the hospital kept pushing it on me though because he thought i had anxiety. I would be cautious with benzos but I think they can help some people when used right.
  7. I would talk to your doctor about it. They may feel that staying on something is better than not. I would also recommend starting a prenatal vitamin now (prescription ones are best) if you plan to become pregnant within the next year. It could be just me but I feel a lot better on prenatal vitamins and I think they help. Only you know what your body can handle but don't be discouraged. I thought I was gonna have a miserable pregnancy which started off rough but so far has turned out pretty good. Also, i recently went to a high risk OB because I have Sjogren's and she was actually familiar with Pots. She said some women end up fainting left and right but they make it through with the right treatment. I wish you the best of luck and keep us updated!
  8. yes, i have to use eye drops but i tested positive for Sjogrens which can cause dry eyes, mouth, etc.
  9. yes my BP's are usually all over the place with the bottom number usually elevated like yours although it can go lower too and im not taking any meds. I think its all part of POTS but unlike you, I seem to feel better when its higher than lower. I felt dizziest when it was dropping low. In my opinion, I would take note of how the beta blockers are making you feel cause they can add to the dizziness, especially if you are just taking them sporadically. When I was on beta blockers I had to be on a steady schedule of low doses and if I missed a dose I would have rebound tachycardia (heart rate goes up automatically because of the withdrawal of beta blockers). Also, the beta blockers will tend to drop your blood pressure as well as your heart rate. I hope you find a doctor that understands pots/dysautonomia so you can start to feel better!
  10. Hello, I am currently 23 weeks pregnant but not on any beta blockers. I was previously on propanolol (inderal) but I weaned off about a year ago cause it made me super tired. I still deal with tachycardia and Mitral Valve Prolapse (MVP) but have been doing ok through this pregnancy. My heart rate usually goes up to 130 upon standing but I just rest a lot and stay hydrated. I have also taken plenty of echos and holters so I know im not having any svt's just tachycardia and pvcs. I found the first trimester to be the worst so far with being symptomatic ( was pretty bed bound for about 3 weeks) and really noticing a racing heart rate but it got a lot better around week 14. My doctor has said if I need to be on a beta blocker that it shouldnt be a problem cause many pregnant women take them but I am functioning fine for now without it so I just deal with the tachycardia. I know it can be scary but some womens heart rate raise in pregnancy anyway cause of all the bloodflow. I wish you the best of luck with this pregnancy and hopefully you talk with your doctor to find a good solution for you.
  11. When I was first diagnosed almost 3 years ago, they found that I had clonus in both my knees at the hospital. A week later they disappeared. My left ankle reflex was also gone but came back. My doctors think my dysautonomia was caused by a virus which is still debatable. I do not know if it is related but thought I'd put it out there.
  12. I have no idea about the strep but it doesn't hurt to ask your doctor about it. I have MVP and I get pretty bad pains too in the left side of my chest and my doctor just tells me that is part of having MVP. However, I am sure a beta blocker might help but I am soo tired on them that I do not want to be on one until I have to which I am sure will be down the road. I have had multiple echo's and holters that just show tachycardia and pvc's which as long as they are not svt's are not much to worry about. My whole thing was I just wanted to make sure the pain was not dangerous. Also, MVP can cause Gastrointestinal issues which (I think) can add to the pain in the chest. Sometimes I would get referred pain from my stomach which hurts pretty bad too. Make sure you are staying well hydrated which I feel helps mine.
  13. Congrats!! I am currently 18 weeks along and feeling pretty good. I felt like crap without any energy during the first trimester but a lot better in the second. I am not currently exercising other than taking my dog for a short walk occasionally because my heart rate seems to be higher with pregnancy. I dont' necessarily feel better with pregnancy but I can't complain either because my symptoms seem to be stable. Get lots of rest when needed!
  14. yes, gi issues make everything worse for me. Mylanta and Zantac help me out a lot.
  15. My pupils usually are noticeably always on the larger side. SSRI's made this worse and was part of the reason I discontinued. My doctor said it was part of too much sympathetic activity. I have had it where they are different sizes like yours but they have gotten better. In my experience, the lousier I feel the more dilated my pupils are. I hate fluorescent lighting because of this reaction. I think its all part of dysautonomia and its listed as a symptom on some sites. However, the crawling sensation you have might be of some concern. I do not have that but maybe others do. I do not think it would hurt to get that checked out.
  16. Thanks everyone for the kind words and experiences. I hope this eventually gets better or it may be time to get back to the doctors.
  17. Ok, so I am only 6 weeks along and we have not even told anyone yet. I was feeling great before I got pregnant with little to no symptoms and no medication. I was even to the point where I did not have trouble working out or standing for long periods of time. Then three days ago, it all started up again. I am thinking this has to do with the pregnancy and hormones but its miserable. I can barely stand without feeling like I am going to faint. I feel feverish which is unusual for me because I usually run a temperature of 95-96. I feel like my legs are going numb at night probably from pooling and I am pretty much couch bound again. Did this happen to anyone else in her pregnancy? Did it eventually get better after the first trimester? I have read some posts on here about pregnancy but I just wanted to hear some first trimester experiences. Thanks in advance!
  18. This was 2 years ago, but my cardiologist started me on Paxil and it was super helpful at first for a lot of symptoms. Eventually it was too strong so I switched to a low dose lexapro which was helpful for a while too. The side effects can sometimes be annoying though (it was restless leg for me and feeling jittery) so make sure you have the right dose.
  19. I just took 2,000 I.U.'s a day of vitamin D for two months and my levels improved from moderately severe back to normal. I would consult with your doctor about this. The tanning bed thing might be ok if you are not getting any other sunlight otherwise because its spring I find getting sun to be much easier.
  20. I agree with CharmedLinz... My neuroendo said that my gallbladder is not working as well due to the dysautonomia. However, this was after I had it removed due to an ejection fraction of 17% or something like that. I was having pain especially in the abdominal area and right shoulder. After the surgery, it did not help and things seem to get worse. I now have diarrhea quite often which i contribute to that as well as the dysautonomia. Also, I saw the pathology on my gallbladder and it said very mild cholecystitis which i dont really think is true because otherwise it was perfectly normal. Even after the gallbladder removal, I had many gastric studies and eventually ended up with gastroparesis for 3 months. I am much better now 2 years later but it def took some time. I would investigate all other factors and make sure it is your gallbladder before getting it removed. In my experience, if you see a surgeon about your gallbladder and say you have any pain, they are going to tell you to remove it.
  21. yes, I experienced this when i was on the dehydrated side and it was miserable. I agree with what others said and I would also add to make sure they are taking it out of your dominant arm (right if right handed) usually more blood flows to that arm so they have less of a time missing it. I found this to be helpful for me at least.
  22. yes, I feel oversensitive to everything.. Smells, lighting, medications.. It can be very annoying!
  23. Hey everyone I am a hairstylist (now I do it part time because of pots) and I think if you are feeling ill you should ask the stylist to stop and give you a minute to move around. If you are feeling overheated, most blowdryers have cool air button that you could have put on you as well. Remember, you are the client so they are going to do whatever makes you comfortable (if they are a good stylist). I think the person who mentioned going with wet hair or finding a stylist that will come to you is a good idea. Styleseat.com is a website that lets you find hairstylists close to you and some who will come to your house. And yes stylists make clients uncross their legs and put their head down for an even haircut.
  24. Yea, in my opinion I would stay away from the advil (or any nsaids) if it is causing the gastritis. It will probably subside if you stop. Otherwise I take zantac or mylanta for gastritis and it makes a difference. I would tell your doctor that florinef is giving you a headache and advil is giving you gastritis. They might prescribe something else for the headache that does not irritate your stomach. Feel better!
  25. I had a doctor tell me he thinks I have MVP because of the sounds my heart makes. I had a echo before that did not show it but I want to get another. They did not seem to think my MVP caused my dysautonomia but I think it def contributes to symptoms. I get a sharp pain every now and then on the left side of my chest and my hands and feet are always cold like yours. My mom also has MVP but she has no symptoms of dysautonomia what so ever. The most important things I have heard of MVP is that you have to make sure there is nothing structurally wrong (with an echo)
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