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Joann

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Everything posted by Joann

  1. I always love how they tell you to see a specialist when you are really ill and the specialists can never see you! My mom had the stomach bug and it took her over a week to get over it, she ended up in ER and she doesn't have POTS. They gave her I.V and some anti-nausea medicine. You may need to go to ER for both, if you aren't getting better. I had the regular flu in Feb. and just the fever caused my POTS to flare. I was told that fevers dehydrate you and I didn't have the stomach issues. Hope you feel better soon.
  2. On an extremely bad day, I will just have to lay down and try to sleep although, usually during the intense flare, I can't sleep. I may put T.V. on something I don't have to concentrate on, like on old movie or a talk show. If I begin to feel better, I may get my laptop and search things, play on my kindle. Since I have met people here and on other sites, I have made some friends that are experienced on dysautonomia and sometimes I will call them for info and reassurance. They seem to be more helpful and quicker than calling doctors! LOL. As soon as possible I will try and get up and walk, even if it is just to bathroom and back. And try to get into rocking chair with ottoman, I find propping up as soon as I can, may prevent my huge high surges. On just "bad" days, I will try to push some and do things around the house, if my bp gets too high, I know I am doing too much, if it stays high, but doesn't climb, I will continue to do things to get it down. If it is morning I try and give it a couple of hours, drink a bit, try to force a piece of toast, then try and get up because mornings are always the worst. Sometimes when I have been in the house too much and I am able to walk, my mom will take me in the car. We will just do a short errand or sit in their house. A change of scenery can get your mind off things, but obviously you can't be really bad to do this.
  3. I think that a lot of us feel like that or have felt like this. Last year when this began, I kept asking are you sure its not angina or my heart, could a blockage cause this?. I was told my heart was strong. Of course, they didn't bring up POTS, they were insisting it was GI and anxiety. I still think its possible this isn't "just POTS" but I am no longer sure what it is. I definitely qualified for a POTS diagnosis, but my bp is high and much more reactive than my heart rate, and anyways, many odd things that are not like others on many of the posts. Sometimes I post things here and nobody responds with similar issues. So I guess many of us are different and we just have to keep searching. Even if you have POTs,its a syndrome and it can have causes, so keep pushing for more information. It certainly can't hurt.
  4. I have heard of using lemon and salt to remove sweat stains. Squeeze the lemon juice over stain then sprinkle with salt. Rub the two together and then let it sit for 15 to 20 minutes. Then launder like usual. Sometimes the old ways work best. Good luck.
  5. Bebe, As to your question as to why a doctor would prescribe a certain drug without knowing, well, I think that is very common. They "think" this might help and we are our own guinea pig. I think if they had to live with the side effects and bad reactions to a guess on medications they may try and find out more before prescribing. But to be fair, I think doctors do that because testing is very expensive and some times invasive and they figure try it, if it works then that is probably what it is. I have been prescribed clonodine for that reason. My doctor thinks it may work better for me than the medication I am on. I may have hyper pots and instead of testing she figures if it works, it works. I have not yet tried it, I am scared to go off what I am on, and to try a new drug. She doesn't do testing except for TTT, so I am going to Cleveland for tests and then I will decide about medicine. I also had the same reaction to Celexa, I felt horrible, it actually made everything worse. I was sweating, heart pounding, high bp. Months later another doctor had me try Lexapro and I ended up the same way and back to the ER. My doctors and I have decided I should not try this type a medication again. But everyone is different, some people do wonderful on these medications. I had hoped they would work.
  6. Ramakentesh and Issie, I am like that also. I can have a day where I feel like I can just do so much, but if/when I do stuff, I rebound later that night or the next day or so. I will get a huge flare, so now I am really afraid to do things on good days. Recently I had been using light hand weights for about a week, I did a few more exercises with them than normal, and did not feel bad, but the next day started to feel bad and the following morning I had a flare that lasted several days. During the flare, there is no way I could use the hand weights (and they are only 2-3 lbs) just happy if I can get up and walk around the house. I am looking forward to spring and think I will go back to increasing my walking. Walking seems to be safe for me, maybe if I can increase that I will be able to then add on to it.
  7. thanks for the link. For a while he really didn't want to talk about it much, so its great to see this.
  8. It's tough, I know. I think most if not all of us have experienced this. Some people are extremely lucky and have that person that is just there for them, but I think most of us don't. Sometimes, I don't think they realize how hurtful they are. They can't understand what we are going through. They may think we are being babies or even faking it. Plus they just want there loved one back like they used to be and their lives back to their norm. Sometimes they act like there hasn't been a change. Some friends of mine who have been ill a long time, (Before this, I really didn't know people who were really sick) have told me it took their husbands a long time to really "get it" I am not sure what my husband really gets it, but I think he is more understanding than he has been. He used to make me feel guilty about anything i asked. I would ask him to bring up my laundry from the basement and he would , sigh and then I would have to wait forever. I felt like I was asking him to scrub the floors with a toothbrush! But recently, he has taken over some tasks and doesn't complain about it. This past flare, he called to see if I needed him to pick up our daughter from school, and actually asked if it was okay for him to leave me on a Saturday night. So maybe it just takes time for them to get it. Plus, no offense to guys reading this, but hey, most guys are so used to their wife doing everything, they just don't know what to do. I mean the wife usually does many of the duties and is usually the care giver of the family It's not right that he is treating you like that, but maybe that is way of dealing with it, denial. Maybe he needs a night or day away to re-charge. Sometimes, you may need to remind him that you know it is hard on him, but maybe he could remember it is very tough on you. If that doesn't work, just give him a good kick in the butt! LOL
  9. I am interested in this topic also. I posted similar question last week. I have been told I need injections for my neck and am afraid of reactions. I am waiting on an appt. at Cleveland Clinic, maybe they will give me their opinion. I will let you know, but not until mid April
  10. I lost weight, in fact, in the beginning the doctors were trying to tell me my problems were just acid reflux and once we got that under control and I was able to eat I would be okay. They would not believe that I was having additional symptoms with activity. But I could not eat anything, even water would bother my stomach. I am 5'7" and I was down to 100 lbs. It has taken over a year but I have gained twenty pounds, this is actually about my normal weight, I have always been really thin. I am trying to gain some more because when I have flares I am unable to eat. I tried eating just healthy food, it didn't work, I need fattening food. I avoid my food triggers, but I eat an ice cream bar and chocolate every day to gain/maintain my weight. Have had to give up so much with this thing, thank godness not my chocolate!!
  11. I am not going to concentrate on worrying about a short life span. I am going to search for cause and cure or at least management of this! We are all so different. I know the question is do we get old but I refuse to think I have a small amount of time left.
  12. I wish/hope that the diagnosis that they conclude would be something we all could have. The article makes it sound like we should all be "cured" with exercise. If there program is different, I hope we are able to try it out. I did like the way it describes every thing in an easy to understand manner.
  13. I believe 717 is considered high. Mine was just under 800 and it was considered high, and because of symptoms they first considered a pheo tumor. But usually with those your levels go even higher, like double or triple the amount. I have been told I have POTS and possible hyper, but I am still going through testing. One of the doctors said he want to check some other autonomic issues also. So yes, your increase from sitting from standing is a possible symptoms of it.
  14. Layers help. I am one of those that can't stand being cold. I actually like the warm weather, unlike so many here. If I even drink a cold drink, I am sometimes freezing.So when I am cold, I will often heat up some water in microwave and drink that, I start to feel warmer. I also have throw blankets, on chairs, couches, etc.. I always have flannel shirts or hoodies on over my clothes, even in the summer. Double socks, and slippers in the house. Also you can get those little hot packs that you microwave, they are filled with rice or beans. Cuddling with someone can help too!.
  15. Naomi, I actually saw one post where you had commented and mentioned your problems with C5-c6 and I actually pm you today! I used to have tons of adjustments, about 6 months before the onset, I had what they thought was a pinched nerve in my neck that was causing numbness in left arm, it was after an adjustment and they were working on that, I didn't connect that I also started to have pain in jaw about two months after that. Both had gone away when all the wonderful other symptoms began occurring, so I didn't even think about them at that time. But I am wondering if the adjustments did do something. After one or two adjustment, I sat up and told him that I was feeling some discomfort in my upper chest from the adjustment, I wasn't concerned because after adjustments sometimes you are sore. He acted like it had nothing to do with the adjustment, I also started having throbbing on the sides of my neck, I kept saying it felt like the arteries or veins. They said maybe TMJ was causing it. The neurologist in my hometown said the same thing to me that it wouldn't cause anything but pain in neck and arm, she had me do some PT and highly suggested shot. I don't think she does anything about dysautonomia, she did not want to look into at all. I recently went to Cleveland Clinic am going to call the neurologist there to see if he has reviewed the mri I left with him. I think you are right there is something in that area that is causing at least some of it. One of my friends suggested the place you mentioned. I will maybe research it, but I am so in debt right now. CC just sent me a bill for the first visit and my tests are to be in April, I shudder thinking how much they will be. Thanks for your input
  16. So, I have been told I have POTS, possibly hyper (still waiting on testing), but I also have cervical stenosis, degenerative discs and spurs, at c5-c6 and a little at c4-c3. A while back ago, a doctor suggested a steroid shot to help this. At the time, I declined, as the idea of putting a steroid in my body, especially when they were searching for a pheo, seemed like a unsafe idea. Well,now they are "pretty sure" I don't have pheo or carcinoid tumor, probably "just" Pots. I have asked if these cerivical problems could be contributing to POTS problems and told no. But I am currently having a bad flare, and it starts with pain/pressure/throbbing in the back of neck and head to the left of spine and my jaw, I have also been diagnosed with TMJ and usually it doesn't bother me, but with this flare it is really bad. It is locking and popping (the popping grosses out my daughter and she likes to show me off to her friends), so jaw hurts too. I get nauseous and my heart rate goes up and bp too. Of course, it is much worse with change of position. I tried doing some light hand weights this week cause I was actually feeling pretty good, and am wondering if I moved something in my neck and if it is now rubbing on a nerve. And am wondering if I did get a steroid shot if this would help it? Or do steriods mess up people with POTS, in particular ones that have bp increases not decreases? I am always afraid to try medications, I react to them quickly and they can either really really help or really mess me up.I looked up older posts and only saw one where someone said steroids helped someone because it thickened the blood? I have a reason for having a healthy fear of medications, but also don't want to miss out on something that may help. Anyone have a steroid shot or any ideas about getting them? Thanks for your help
  17. That is awesome. You must have some really good karma. Usually you have to wait forever to get into specialists.
  18. Keep us posted on how the meds work. So happy for you. It is so awesome when you find a doctor that clicks!
  19. I take 1/2 of 25 mg in a.m. and 1/2 in p.m. When I initially started taking it, they had me take a whole pill at night. I felt terrible. Some people thought it was just my fear of pills, or just part of whatever was wrong with me. But I still think it was the pill. I would get really dry, eyes, throat, nose and it felt like my throat was closing up. Also felt like my heart was pounding. I was told to take 1/2 of it and it didn't seem as bad, and then we added 1/2 in morning. I will say that the morning dose is taken with cardera and often I will feel very tired for a couple hours after taking it. But I hate to say this, I feel like I will jinx myself, it does seem to be helping me.
  20. Kids are so smart. Let's hope he is right, and soon!
  21. Totally understand your frustration. I still feel that life is passing me by. Sometimes I think am I living or just surviving. But maybe we have to do a survival mode so we can get back to living. But that said, you just got to keep plugging on. Keep trying things, and sometimes you will need to rest, so rest.Maybe those 5 hours at work are just a bit much right now. But I have found that other times, I try just a little push, maybe it will just be sitting up instead of lying down, maybe just walking a little bit. Just try and keep hope that things will get better. Sometimes just talking to someone can help you emotionally if not physically. And as some have said here is a good place to vent and be with people who understand.
  22. Hey Jen, Glad you are home and hope you are feeling better. I asked a few of my more "experienced" Potsie friends about this and a couple of replies. One said she had heard of this happening with some POTS and MCAS patients. Another said to check out aps. The web link she gave for that was apsfa.org Several people said they either had it happen to them or some one else. So it is good your neurologist is checking it out. By the way I just got my bill for my first visit to the Cleveland Clinic, the part insurance didn't cover. Uggghhhh! I don't know when I will show that to my husband, maybe after the second testing visit. LOL Jen so glad you are home, hope they figure this out soon. Maybe this will give you the reason you have POTS!
  23. I agree with Libby and just wanted to add that it is very common to prescribe mega doses of vitamin D if you are very low. They have changed the recommended levels and most doctors feel that you should be between 50-90, I believe, and for some people the upper limits makes them feel better. My level had been a lower level of 30 and then dropped dramatically to 17. That is why the neurologist had me go to 50,000 weekly for 8 weeks. I was concerned at the high level and the doctor reassured me that, that amount would not cause me to go over the toxicity level. It may be coincidence but I my body does not ache as badly as it did. The doctors are not going over a recommended level as someone stated earlier. The recommended level is for people who are not deficient in vitamin D. The doctors prescribe more if your levels are low so you can get to a correct level and then you would return to the recommended daily level. Doctors also have to evaluate each person individually, and some people may need more than others. I am not saying that this is will cure you of your symptoms, but I also felt like you should know this prescription is not unusual.
  24. I took a weekly dose of 50,000 iu for low vitamin d. It was a prescription and I took for about 8 weeks. This is when I was at my worst. My vitamin D had bounced around from 30 to 17 in a month (and it was spring and I was making a point of going in the sun). After taking for 6-8 weeks they re-tested me and I was at 70. So it worked for me. I am suppose to take a daily vitamin D now to keep it up, but I am having trouble finding one that doesn't bother my stomach. I recently purchased a liquid vitamin d and am going to try that. When I took the weekly vitamin D I did have some aching muscles. One site said that showed that it was working. I don't know if that is true or not. I actually took it one week and then stopped because I felt so bad, but then I tried it again and it actually got better after the first couple of weeks. I was also low on B12 and I get a monthly shot. I do feel much better now, I still have the POTs symptoms, but I have more energy, have gained some weight back, and my body is not so sore. I was also tested and found out I had osteoprosis and I am wondering if that is better now that my vitamin levels are better. I do think that osteoprosis and vitamin levels were caused by whatever is causing my "Pots". I was unable to eat and basically just a mess, while I am still bad, last year at this time, I honestly didn't think I would be here this long.
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