Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by Hearts

  1. I have done a seach on the forums and looked through old posts regarding this but most aren't dealing with a permanent loss of hearing. I know it's common in POTS to have hearing loss and ringing in the ears when our BP drops or right before passing out but how many of you have a permanent hearing loss that is always there? I had a hearing test done over 5 yrs ago that showed conductive hearing loss and was significant but it has gradually become much worse causing me to rely on closed captioning when watching tv, difficulty talking on phones, and using lip reading. I can tell it gets worse each year. I wonder if anyone else has had this progression or hearing loss this severe? I'm not old enough for it to be an age issue and it started after my POTS diagnosis and when my illness became quite severe so I thought they might be related. Of course insurance (Medicare) doesn't cover hearing aids so after a long desperate search I found some new affordable ones online made by Siemens that were only about $70 and it has been a life changer! I can actually talk to people in person now and don't have to have them repeat everything over and over only to still not understand. I am just curious if this is something common with Dysautonomia or if I just am different and if you have found anything else that helps. Thanks!
  2. I actually developed worsening narcolepsy over the years and have had severe insomnia for years since my POTS became severe. I tried everything medicinal and non-medicinal and had no luck. My insomnia got so bad I could go days without sleeping but once the narcolepsy got worse the lack of sleep started causing hallucinations. I now will start hallucinating if I go just 2 nights in a row with less sleep than I need or unrefreshed sleep. My pain management doctor was working to find a better muscle relaxer for me and after many trials we came across Tizanidine (Zanaflex). Well come to find out it is my miracle sleep aid. I have been using it for almost a year now and has not lost it's effectiveness at all. The only down side is that I cannot take it during the day as a muscle relaxer because it drops my standing bp even more than I already have and of course the med knocks me out. It is a great nighttime muscle relaxer/sleep aid and I don't wake feeling drugged. I guess it's important to keep searching for something that helps you sleep even if it is used off label. I hope you find what helps!!
  3. I have an oxygen concentrator at home and use it at night (or anytime I sleep), whenever I feel extra symptomatic (uncomfortable tachy, extra dizziness, or just terrible feeling in general) or when I have bad headaches. It helps a lot for me. It tends to help my symptoms calm down and just better feeling in general especially when my heart rate gets so high or I feel palpitations that make me feel uncomfortable. I don't need to get tanks filled since mine is a concentrator but did get an Rx for it when I got it years ago and now I own it. You could buy a concentrator without an Rx but they are very costly so it is better if you can have insurance pay for it. They even have the small portable ones now you can take with you everywhere so you wouldn't need the tanks. I don't know why doctors are so leery about ordering them for patients, it's not like it's harmful and probably is quite healthy for anyone to use.
  4. It has been quite some time since my visit there and I imagine it could be a little different for each person depending on your appointment needs and how affected by dysautonomia you are but for me this is my answers to your questions: 1. I believe my time there was 4 days straight testing and it started early around 7-8am and went each day until 2-3pm. There are breaks between some appointments so you may sometimes have an hour gap or so and others you are running to try and catch the next one. As you can imagine, much of the time is spent in the waiting rooms and as the day goes on the wait seems to be a bit longer. The last day I only had 2 appointments I think so my day was over much earlier. 2. I could have not survived going alone! I needed to be pushed around in a wheelchair the entire time. Walking was not an option and even laid on lots of floors while waiting for appointments. (The good news was I wasn't the only one!). I had my husband with me and he was literally running pushing my wheelchair to get me to some appointments so I was grateful to have him. The days are exhausting and I even needed him there for morale, he had to really push me to even make it out of bed the last 2 days! I think having someone with you is a really good idea. 3. We stayed in a hotel that is attached to Mayo so never had to go outside. I think it was a bit more cost wise but well worth it. Of course I lived far from Mayo so it was necessary to stay in a hotel. I think for me personally, even if I had lived within an hour drive, I would have wanted to stay there in the hotel because like I mentioned it is an exhausting few days and I could barely drag myself out of bed so certainly wouldn't have wanted to drive far. 4. I didn't try to ask for any special appointment time frame because I needed to be seen asap and the wait was quite long so just took the next available. I think if you are choosy you will find it will be harder to get seen or take longer but it never hurts to ask! I hope you get more opinions and this helps. At the time I was seen there I could barely bathe myself and spent more time laying down (planned or not) than upright. I could only make a quick sprint to the nearby bathroom at home and barely make it back to bed before fainting. So I was barely functioning and this affects a lot. If I had to go to Mayo now, being slightly more functional (still homebound but able to be upright more and can sit for longer periods/ bathe easier/ rarely pass out (I have learned to live with my symptoms and manage them much better along with meds) I would still make the same choices above. I could not go through all that alone even now and would need the same accommodations due to the grueling schedule. Good luck to you!
  5. I am sorry to hear that your mom passed, I'd give you a hug if possible. Be kind to yourself, you are dealing with so much it sounds. I do hope you can get the rest and meds you need without being admitted to the hospital. We all know recovering in the comfort of our own home is a million times better than the hospital. It sounds like you have helpful, caring friends to help take care of you....that's priceless. Dont hesitate to ask those around you for help especially right now, you need the focus on you for now. I wish you start feeling better and stronger soon. Hearts
  6. My experience and opinion is a bit different from the others that have responded. I haven't had a drop of ANY alcohol in YEARS as it bottoms out my BP and makes me so ill with my POTS but I have had a few similar experiences as your daughter. For me, The first time it happened about a year ago I was sitting in my room. I started hallucinating (though I didn't know I was) and talking to someone that wasn't there. My husband saw and heard me and said I was slurring and not making sense. He couldn't rationalize with me at all. He decided to take me to the ER. I had testing, was admitted (all the while still having these full blown symptoms). The episode lasted many hours and I still to this day dont remember any of it. I dont even remember giving the ER nurse a urine sample, seeing my family in the ER, having conversations, or having an IV started even!! Apparently I would make sense sometimes and not others. The next day I woke in the hospital. It was quite scary hearing everyone tell me everything I did and said and having no memory of it but a few flashes here and there. The conclusion was the lack of blood and oxygen to my head. I do believe this because I have had some more minor episodes since then and it seems (especially when I haven't slept much a few nights in a row from my bad insomnia) when my BP gets too low and/or my heart rate so fast that my heart doesn't profuse properly I get easily confused, dont make sense off and on, and have difficulty communicating etc. When this happens I lay down for a while, nap if possible, and it clears up. Just getting more blood and oxygen back to my head for a while resolves the bizarre episodes. I still get these occasionally but have started to recognize when I need more blood/O2 now so can usually lay down and prevent them. Maybe your daughter could have been tired, supine too long, and the alcohol lowered her bp even more causing the symptoms? Of course this is just my personal experience I wanted to share and hopefully it wont be an ongoing issue for her but of course never hesitate to bring it up with her doctor incase it could be something else. I can relate to how an episode like that is a little scary, it still amazes me that I was so irrational and not myself. I hope this was a one time incident that both of you wont have to worry about anymore. Hearts
  7. Thanks Katie! Seems worth giving it a try, at least for me right now. Thanks for your input!
  8. Sounds like they are really on the ball there, that's wonderful. I love knowing they are taking good care of you. I hope you have as good of a sunday as possible too, and thanks! Take care of yourself
  9. Yes! I dont take florinef anymore and it's been years since I have taken it but I do remember when I first started it that I felt that way. Maybe because it is a type of steroid I believe? That is a frustrating feeling when you want to rest but cant. For me the side affects went away over time (though I cant remember how long it took). Since you are in the hospital maybe you could see if they can help ease the side affects for you. I think my doc had lessened my dosage and slowly worked me up to help, if I remember correctly. It would be worth letting the nurses know though so they could tell your doctor and see if they can make adapting to it easier. No fun bouncing off the walls while confined to a hospital bed I imagine!! Sorry you are having to go through that!
  10. Has anyone tried a cooling towel like "Arctic Chill" or "Frog Toggs" etc. to help keep their body temp down in hot/warm conditions? I was considering trying one since it is inexpensive and I had a few people suggest I try it. I dont expect a miracle from a towel lol but if it helps keep me more comfortable that would be worth it. Temperature regulation is a huge issue for me and I get hot so easily. I'd love to know what opinions of these towels anyone may have. Thanks!
  11. I hate hearing you are hospitalized and for 9 days and counting yuck! It sounds promising that you may be better off when you leave. They seem to be really trying, that must be encouraging. I wish you much luck and that you will be released soon with answers and a good treatment plan. Stay strong!
  12. Here in this paper under Non-Pharmacological Treatments it states "The patient should avoid aggravating factors such as dehydration, and extreme heat". http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/#!po=40.4762 This link was listed here on Dinet and appears to be a reputable source. Hope this can help!
  13. This is something I have a hard time with too because how I feel literally changes from hour to hour or even minute to minute sometimes. I have constant changing symptoms and areas of pain non stop. It's like my body is constantly fighting to regulate every function so I have no baseline. If I do feel "ok" it may only last a few minutes or an hour at the most. I always feel unwell, at least in some area of my body, and it sure makes it hard to commit to anything or make plans. I rarely am able to leave home because of it.
  14. This is just a thought because I have experienced this occasionally and mine has been due to certain regular medications I take wearing off. If you take certain meds regularly they could be wearing off at that time of morning and maybe shifting your med schedule could help. I dont know what meds you take but we all react differently to them and some dont last as long as the label says they should for some of us. Again, this is just my personal experience so thought I would share it. I hope you find the cause.
  15. I've been symptomatic for well over 20yrs but very debilitating for the last approx 8yrs. It's been a lifelong battle and has always affected my daily life to a certain degree.
  16. TCP, may I ask what Neurostim is? If it helps I would really like to know about it. Thanks again for the responses. Sometimes I feel like a wheelchair part-time would be such a relief but vanity and hard headedness (plus feeling like others wouldn't understand my need for it) really prevents me from even looking into that. At least I know I am not along with this pain. It's truly frustrating and uses so much precious energy some days.
  17. One of my constant problems is the pain in my legs/knees/feet when I stand or walk. I assume it is from blood pooling since laying down quickly relieves the pain but it is difficult to even walk through my house even briefly (on top of the orthostatic issues and everything else) it feels like it takes every ounce of energy and strength I have which isn't much. I cannot wear compression hose because it makes the pain so much worse and I have tried many kinds many times. What do you do when walking is so difficult and painful? Does anyone else have difficulty wearing compression hose due to pain?
  18. Thank you for the tips and information! It gives me some things to look into and anything is worth checking out if it helps.
  19. I know most people here probably have GI issues and I have many of them. I dont take any regular meds for GI problems though. Frequently I get severe abdominal pains not related to eating, they come out of nowhere but are worse when standing, and I get the sweats. Does anyone take meds that help with this or have any tips? I drink plenty of fluids. My diagnosis' are dysautonomia/POTS, NCS, OI, hypotension, EDS (the list could go on but those are the major points).
  20. As a mother myself who has had dysautonomia/POTS nearly all my life (though diagnosed after having my children), I can tell you that it IS doable and you WILL be a mom someday. There is an internal drive that switches on inside a mother when she has a child that makes nearly anything possible. We poties already are great at pushing ourselves to do things but when it comes to taking care of your children you will be amazed at what you can push yourself to do. When you do have children you will be able to do more than you imagine. You will learn to push more when needed and rest when possible. If I did it, you can do it, and your children will be a custom to your activity levels. It really does work out. As far as your MIL goes, just be ready to prove her wrong. That will be better than any words you could say to her. You do have a wonderful man if he stands by your side instead of his mothers during times like this. You will both make wonderful parents! Hearts
  21. Hey everyone, Im new here but have always had a copy of this BP chart and found it helpful. It shows typical symptoms at different BP measurements and how low is too low. Hope this helps. http://www.vaughns-1-pagers.com/medicine/blood-pressure.htm
  • Create New...