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Scout one of my episodes at work was triggered when I turned to look over my shoulder so I get what you are saying. I had been “okay” up til that point so I have also wondered what was up with this head turning ability to trigger an episode.

You are my hero. So much respect for what you did and what you are willing to sacrifice to experience a time slot of “normal”. I sit and lament about loss of life in the form of what I call living but I am a wimp. I get freaked out and scared off of trying because I fear the symptoms and implications too much. And by implications it is all just fear of the unknown to me. There are no secrets I know that I am holding back as far as what we should be doing or what we shouldn’t be doing and what will happen accordingly. It’s all fear and anxiety that hold me back. And trying to string up a bunch of events like dot to dot and make sense of it and I can’t. I don’t get it.

I had inquired about home health care a couple weeks back. I am getting PT , OT, Speech therapy, a social worker is due to come out also. I have an aide that comes twice a week to help with my bath although that did not go well at all Friday. Even though I took a very short bath it triggered an episode that lasted for hours. Got so overheated after. But I am receiving services through Medicare for anyone that this might help. Requirements are being home bound for six months with extreme difficulty going places. Requiring assistive devices when going places etc. Obviously I do have Medicare but I believe these services are also available through Medicaid. They last for 4 weeks at which point you are re-evaluated. I just started last week. They do take vitals when they come out and record them. For my PT they want me standing at least 12 minutes and I can choose a task around home I want to get done for that 12 min. Wow you know what I get to choose between 2 or 3 days a week for the PT. Right now I am 2 days but I’m just thinking if I chose 3 days and I am feeling up to it then I would have that oversight for an extra day.

I’m sorry you had to go through that scary uncomfortable incident whoami. I’m glad you are okay.

When I could tolerate warm baths I felt it helped me. I couldn’t do hot but soaking in a warm tub was very soothing to me. I just had to be cautious when I got out that I gave my body a cool off period. But then I was up and ready to do some tasks or a short outing and felt moderately good and did not get symptomatic.

Thank you for all the replies and helpful suggestions.

I have a full house here and many things end up on the floor. I can bend once or twice but when I start looking around and there are a dozen things laying on the floor I get overwhelmed. I’m not sure I’m tolerating all this bending well. I have had grippers from time to time but I think the ones I gave bought have been cheaply made and fall apart easily. I’m looking more at getting a heavy duty one that can handle picking up heavier items. Either that or get a kid to help with that task. It honestly has been a cause of much frustration that my family will just leave things on the floor or I think my husband will purposely go to the store and come home pull the food out and throw the bags on the floor and there they lay. It is a small thing not worth fighting over. But I think it might be my POTS or health in general that makes some of this stuff that should be trivial like climbing a mountain for me. I realize my family already sacrifices and have to put up with having a sick mom/ sick wife is how they view me I think. yesterday when I walked out to the kitchen and saw the bags once again on the floor I was like screw it just get a gripper pick the stuff up and quit stressing over it. i just wondered if you think it’s POTS that makes all of this more challenging both physically and emotionally.

Keep up the exercise if you can tolerate it. It is one of the recommended treatments. Or things that seem to help it. I am not sure that treatment is the right description.

You are amazing to have gotten through that tremendous challenge.

Yes I’ve felt it before.

I am also very frustrated with this and comments I get. At the moment I do not have the energy to try to explain my own situation but I get it. i just feel angry and want to cry this morning. i think my coping is running low. i wish you the best hang in there. We need support just from the emotional psychological toll this all takes. I don’t know that talking changes anything though-so sad.

This is what I got. It may not be practice for all purposes but I got it because at the time I was hoping to get out to outdoor activities with my family. I got a really good deal on the price. I would probably like to have a wheelchair also which would be much more portable and for certain situations more appropriate. I love the scooter though. I have not been able to try it out yet other than around home. I’ve become very heat intolerant and have had a bit of a worsening of symptoms just here lately.

Have you tried the neck brace and did it help? if I knew I could live a normal life just no head movement I would probably do it

I will ask with my doctor. I had looked up what you needed to qualify and it looked like maybe I did but I could be wrong. I will update once I find out. I have Medicare part A and B. I pay a monthly premium for one of those.

Does anyone have one or have you tried to obtain one through Medicare? I am currently looking into this.

I cut my own. It is not difficult. I’m not sure if you can tolerate having your arms up but you can do it little bits at a time. The back might get a little tricky you could ask someone to square it off for you if you live with someone. There maybe video YouTube clips that show you how to hold it up and decide on a length and then cut each section you pull up uniformly against pieces you hold up from the old batch you just cut. Maybe you would enjoy both the look and feel of someone else doing it for you. If so I hope you find someone.

Hi Scout I’m sorry that happened. I wonder if you should contact your health care provider especially if you are on meds to raise your BP. I’m currently going through a period where my symptoms are flaring and my BP’s are running higher as a norm. When it gets up so far I feel dizzy and start to feel everything is surreal. Not sure if that is the same feeling you get. I have not recorded mine as high as yours but in honesty I don’t take it that much. The feeling you describe kind of hanging in limbo in a bad place I’ve been going there often lately. When I am there it feels like I am on the verge of some type of crisis so it is an uncomfortable feeling. It can last for an hour or so before I come out of it. I am amazed that your BP came down that quickly. Mine seems to take a while to come down and then will hang out around 115/70 I guess I don’t keep taking it at that point. Are you still walking around the house or are you fearful of that activity now. I hope you can get some exercise.

In my case yes I have these. They do go away on their own. In my case I think it always feels worse than it is and does mimic a panic attack. I guess panic attack is one way our body can signal us to change what we are doing. I guess I try to limit my time up and activity to where I do and rest do and rest all day long so I never get to that level. It usually takes me 30-45 minutes to feel okay again if an episode starts coming on strong. I hope you can find a level of activity that you feel satisfied with that also helps you avoid the episode.

Agree with the previous comment. The amount you get will be based on your income the past few years is my understanding.

Yes I have gotten that spasm feeling. Then I started feeling that same exact sensation in other locations in my body so I am not sure it really was my heart. I have horrible anxiety and I think many of the sensations I get are related to not managing my stress well so it comes out in other ways. I respect that your situation might be different but I have worried way too much about everything to be honest.

Okay for me it was kind of a long process. I was working full time which was 3 days a week every other weekend. So what happened basically was this all started in 2009 and I used up a lot of my vacation time either taking weeks off at a time or just sprinkling in vacation days to my regular work week at first til I just realized it wasn't working. I wasn't getting better. I could not handle the 8 hour shift. So then I cut back to weekends and I think it was a 6 hour shift. I barely got through those but I was trying to hang onto my job because my hourly rate was really good for me and I didn't want to lose that. Then I dwindled down to PRN ( call in basis ) that was by the year 2010-2011 and it was horrible when they would call I was too sick to go. So finally I got the letter in the mail wishing me well telling me if I got better to come back and I would have a job but for now I was being taken off the schedule all together. I called in to make sure I wasn't fired or anything like that and she said no. Just no longer on the payroll for now. It wasn't disciplinary or anything like that because she knew I was genuinely ill. Well that all ended up being just what I needed to show that I tried a reduction of hours over time and I still could not perform my duties. So as soon as I got that letter I filed. I was thinking you were supposed to wait a year of being unable to work but I had something like that. Close anyway. So I did receive a check then with the remainder of my PTO hours. I was denied disability twice by SSDI and then contacted a lawyer. I really did not have a POTS diagnosis yet and they used anxiety and anorexia as diagnosis. I also scored really poorly when I went to do the assessment with disability's chosen psychologist. So it did go to a hearing. I was able to do it local via a video conference. The attorney I hired was kind enough at the end of my hearing to ask if she could possibly send in a note to the judge because she said she felt like there were elements of my condition not captured in the hearing and the judge agreed. I did get my approval then and they did give me backpay back to the time my hours were reduced. So it was later when doctors were running tests that I got an official POTS diagnosis basically so insurance would cover the tests I was getting and the dysautonomia specialist said from everything I was describing it absolutely sounded like POTS. Due to the length of time I had it and the amount of deconditioning he saw in me he said he was going to go ahead and assume I did have POTS. I have had one full review since my disability was rewarded and just had another mini review late October and I have not heard anything back from the mini review yet but sadly I looked at the instructions after I mailed it and I did not follow them exactly. Maybe they get that frequently with disabled people I do not know.. I hope this helps you. I am sure you know that maybe you can get your doctor you see for dysautonomia to help verify your condition for them. I also see a neuropsychologist and report all my symptoms to her so I have her as a back up also. I guess it can be tough to prove you are still ill if you do not see a physician regularly and follow up related to your condition.

This one is easy for me. My guess is with that reaction to wine that you had you have a sulfite intolerance.

Hi Derek hugs to you. One of my first episodes was very similar to your first. It was my first day back to work after having a short leave due to chicken pox. I had gone to lunch and felt so hungry I ate a hamburger and a full bowl of leek soup which I had before with no issue. I was sitting at my desk and all of a sudden I felt faint. I could feel my head or face flush and get hot. I told my coworker I didn’t feel right to get a nurse. I ran in and got my feet up as high as I could in a recliner and my heart took off like a race horse. I did not pass out but was in a full blown episode. About 3 nurses came and got freaked out looking at me. We all thought I was having a heart attack it was bad they were taking my bp offered to call my family got me a wet cold cloth and said sorry but we gotta call the squad. The one said it seemed so serious she was prepared to pull me out of that chair onto the floor and start CPR. If we only had a team of nurses like that 24/7. Like you I did to go to ER the difference whatever reason during my episode was my BP went up not down but in ER all of a sudden it would drop and another wave of symptoms would through me. The doctor was so frustrated he took of the automatic blood pressure cuff and was taking it by hand. Like you this was just the beginning and doctors would either have no answers for me or claim it was anxiety. One thing I have done is watch what foods I eat. I do not completely understand why certain foods affect me the way they do. Leek soup has sulfites I believe and that is one thing I have to avoid. My other worst symptoms have occurred after potatoes tomatoes and oranges. Potatoes/ tomatoes are in the nightshade family and oranges are high in salicylates. So I am sensitive to the chemicals in foods. I am not suggesting you are or this will solve anything but for me it is an issue. I cannot eat very much at one time so a full stomach will also set me off. Also I cannot eat my food hot that will also bring on an episode. So one of the thing I can eat is certain meats but I have to cook those meats and let them chill before I eat them. Both the temperature and the fat is an issue for me. My body can handle fat that has been solidified and takes a while to get into my system. Warm fat I cannot handle. My body goes into distress. It has taken me a long time to figure these things out. I did spend a year in bed rest at my worst related to heart rates that just seemed totally unregulated. Basically if I was up my heart rate was crazy high. Laying down was the only thing that controlled it. Now I can be up for 15-30 minute intervals and it may speed up but I handle it okay. I just have to sit down soon and I do spend the majority of the day sitting with my legs up so that my heart rate is in the 70’s to high 60’s. Fear was a huge factor in the beginning for me too so I understand. The more I have dealt with it the less fear I have. You get a bit desensitized over time and although the episodes are never pleasant and we don’t want or look forward to them we get through them. I would suggest trying not to go anywhere by yourself for now that is what I am doing. I had been better and more independent for a while and the past 3-6 months seem worse for me. I am having episodes again and they are happening behind the wheel. I have time to pull over but then I am incapacitated and stranded often in a place no one even knows where I am or what is happening. I should probably get a safety device button to push to call for help because I’ve had difficulty even operating my phone during these. My coordination and focus I just lose it temporarily. i was able to go on disability for my situation so that helps me a bit although I basically end up buying groceries for myself and my family with the money. But my other bills are paid my husband does have a good job and covers our mortgage and other bills so I guess it works. All my needs that way are met. We were able to get a house with everything on the main floor for me. Laundry and we have a master bedroom with bath attached. The kitchen is not a far walk from the bedroom either so that is nice. It does have a sunken floor so it is one step down and up in places. So if I needed to be in a wheelchair that part might get tricky but I can walk and stand enough to navigate. It took me a while to accept it but I now ride a disability scooter in stores and recently purchased my own. I had not shopped in over a year because I had collapsed in the middle of the store. Collapsing is something I do and the reason I can no longer work. It was happening on my job and I was to take care of 20-30 people but was not stable myself. At first I was so sad not to work I loved my job. Over time though I think I was brainwashed to think I loved my job. There were so many downsides to it that I just did not want to accept. My coworkers some were not that nice and it took so much time away from my family. My illness holds me back from things I would like to be able to do with them but it’s good that I am present in the home for them. I do everything I can and I’m actually happier in some ways now. It’s odd to think I could be happy with this routine there are certainly things not pleasant about it. It does not come from a place of laziness because I am a doer and my brain is always going with ideas. I wish I could give you some insight into what your future will bring but it’s impossible for me to know. You could get better totally I believe it and there are all different definitions of better. With this condition we can almost go into a remission like state and if you learn what your triggers are you can sometimes ( not always ) avoid episodes. Sometimes though they just happen and you are doing nothing wrong. Just trying to live your life and they come out of nowhere. In the beginning my episodes seemed so severe I thought I would die. I was around 42 at the time. When I made it to my 50th birthday I could not believe it. I felt stunned the entire day. I said I don’t need a present this is my present I am still alive to be with and enjoy my family. And here I am now 52. I never would have guessed. Our bodies really can take a lot. i cannot really tell you what path to take I think you have to find your own. You have every right to do everything possible for yourself. I have been to doctors so many times. Had tests. I even had to have about 6-8 IV iron infusions because I got so anemic while going through perimeopause. I didn’t think I would survive that. The anemia or getting the iron infusions I thought those might kill me but I got through. Everything just seems harder with this condition but life is still possible. It is most likely different for everyone so this is your experience your story to be figured out in time. Allow times to just relax and not worry if you can. Pretend or hope to be normal again if it helps get you through it. I do. I never give up hope that one day I wake up and I am healed. Until then I just keep going and doing what I can each day. No doctor’s visits planned for me unless something changes. I am wearing a 30 day holter monitor again because my doctor wanted it but I think I am fine and stress just got the better of me this past 3-6 months. Stress management is so important because it just magnifies our issues I think. Right before my first episode I thought I needed to divorce my husband. He had just done some really wacky things at Christmas time. We had 4 little children and he had declared that Christmas was going to be all about him. He had ranted and raved put on a big dramatic show and then he went out and purchased a huge big screen tv. Well now a days everyone has one and they are not that expensive. Back then I think he paid $1,000. I thought combined with other things best case for me I just needed to get away from him. Well then I wind up with chicken pox. Which every time I thought geez I just need to get away something would happen to me. So I freaked out thinking I have four little kids to raise how am I gonna do that on my own. Huge storm of anxiety hit me and most likely I was feeling the effects of the illness that had hit me but it was just like a huge nervous breakdown came over me only I could still function and boom my POTS was born out of that wild combo of illness/ stress. That is my true story and I am not sure how many people I have admitted it to but I wonder how many else their illness came on during huge amount of crisis in their life. There fore one of my biggest focus is staying grounded. Living stress free to help myself and my condition. Sometimes I fantasize if I could totally eliminate all stress my body would heal. Oh and my job huge stress. We had constant drama and crisis there so it was all a double whammy for me. They were always in financial crisis threatening to lay us off. I dealt with death and dying and crisis all day at work. The stress on my mind and body was enough to bring an elephant down and that is many people in this society live with. I look back and think how did I do it. I lived 24/7 in total exhaustion. Take care of yourself. Number one. Try not to worry too much. I know it is natural and only realistic to have concerns but along with figuring things out take some breaks from the worry and just be. Answers may come to you.

I play Clash of Clans with my family.

I think I need to just come right out and say it. My husband has bipolar disorder so the stress I experience in my family is above average. When he is asked to do anything that is an inconvenience to him he blows his top. Not only does he refuse to help he has a meltdown. Will scream yell threaten to leave attack me verbally. It gets nasty. The one time not too long ago maybe 6 months I had asked him to go to the grocery and he threw a huge temper tantrum and threw the list at me. So what I deal with goes beyond irritating habits. As it is we are only together about 48 hours per week. He is gone that much either with work or even when he should be home he takes off and does other things or as I mentioned goes and goofs off at our other house. I have raised my kids on my own for the most part. So nothing about my situation is normal. In some ways the only thing that will solve part of the problem is just getting away period from all of it but I am not willing to desert my kids. They didn't ask for any of it. So I try to get through the best I can. I guess if I could just tolerate all his outbursts I could just keeping pushing for everything I can get from him but I am so sensitive and when he goes off on me it impacts me and my health. When he is home for a variety of reasons mainly my health I need all the help I can get from him and in reality he is willing to spend very little time that way. I was hoping when mom died dad would pitch in and that hasn't really worked out either. So blah. It's just muddle through it for now. My focus is and has been for years to get my kids raised. At my oldest son's graduation I was ready to get up and do the happy dance it was like one down three to go and then maybe I can be free of this h***.