mountain girl

I was originally started on the lowest dose of this med and after 2 days I could barely get out of bed. It took my bp too low and I thought I would pass out every time I was up. I do not really know why alot of drs start with this one though. I was then afraid to try any bb but tried the next one, Bystolic, which was much more expensive, even with insurance, so perhaps it is a factor they consider,as well as what someone else said about it being around a long time so drs are familar with it. Good question.

Yes I do! I have a small baby blanket that I sleep with, I would love to have it at work sometimes, but I refrain. The dolls are a good idea. When I get home from work and do not feel well, I put the blanket around my head or cuddle it and it does help as much as anything can.

I have been on an antiepressant for 10 years or more and way before I ever had pots. I felt sad over nothing and would cry and get very upset over the smallest stuff like you described. The med mostly controlled that until the pots. Now I sometimes cry for no reason and I hate it, because I feel embarassed. It comes over me usually in the evening especially if I have worked or gotten very tired, so I kinda blame it on that. I also feel like I have dealt with the pots fairly well so it is not like I sit around feeling sorry for myself. I wonder if something to do with the pots being a condition of the autonaumic nervous system has something to do with it. Certainly talk with your dr. but it may be the zoloft was helping you in a way you did not realize. Do you or any one else feel trembly and just bad all over when you have the crying spells? It is weird, but I usually feel better after "thecrying spell" ,like it has been a relief of sorts. Again, I know it sounds strange, and is really hard to describe. Blessings!

I do not know anything at all about this cranial manipulation, but what caught my eye was Dr. Goodkins name. I have an appt with him mid Oct. and will be traveling 5-6 hours to see him. I have not had succcess finding a good pots dr locally. From what I read from others it sounds non invasive so thats good. I am going to try to google it to read up on it more. Good luck and let us know how it goes.

I mostly like to stick to my Gatorade for salt intake, because I never really used salt much before I had pots. Ya know, trying to be "healthy." I do eat cottage cheese because according to the label it looks to be fairly high in sodium, is a good source of protein and calcium, and easy to fix with any kind of fruit. I also like t.v dinners sometimes, again high in sodium and easy to fix. I think the Marie Collander brand tastes the best and the one that has turkey, dressing and green beans is not too terribly high in calories.

I take restoril as a sleep aide. I feel that not getting sleep makes me feel much worse and more likely to have the tachycardia episodes. I have never needed any pain med that is a narcotic. Ambien made me sleep walk with no knowledge of doing it, so I could not take it. The Restoril is an older sleep med that for some reason is not used as much but works good for me.

I do feel somewhat better now that fall and cooler temps are here. I feel like I can go outdoors more. I thought I read somewhere that people with pots have problems regulating body temp so when I do get cold it is sometimes hard to get warm yet I cannot stand to breathe in warm air or even have the heater on in the car in the winter. Very strange, just like alot of other things with pots.

I take Florinef 0.1mg every morning. I started on it soon after being diagnosed. The dr. first started me on Bystolic, which is a beta blocker to keep heart rate down, but my bp went so low I felt bad so 3 days later he added the Florinef and it did help keep my bp from going so low so I did feel better. The reason I am not sure it really helps, is because I still do not feel "well" and when the dr. has tried to increase the dose I did not feel any better, so I stay on the 0.1 mg dose and am somewhat afraid to try without it since originally I did think it helped some. I have not really had any side effects on this low dose. I did have trouble sleeping when the dr. wanted me to try taking 0.1 mg. in the a.m. and 0.1mg. in the evening. I tried that for about a week and then I knew it was the evening dose of Florinef because when I went back to just the a.m. dose I started sleeping better again. I believe it is worth a try for you. If it makes you feel any better, I am usually very sensitive to meds and side effects but am able to tolerate this. Someone made a comment that may have been good for me to hear, because I am often afraid to try new meds,they said with pots because the same meds do not help everyone the only way we can find out is to try. I also read that if something is going to help, it usually helps within a few days to a week, and if not we usually are able to know that fairly soon too. Good luck.

I checked the less than 3 month box, but sometimes wonder if I had some of it before because I had always had a thirst issue and drank lots of water and had been diagnosed with fibromyalgia several years before, so I blamed the fatique on that. However, the extreme fatique and heart palpitations and tachycardia episodes started in June 2008 and I was diagnosed with pots by Sept. 2008 so I feel lucky in the sense I did not have to wait years to understand as many people do.

I will be thinking of you and your mom during this difficult time. I often see your post name "pots girl" responding online and feel like you and others online are friends, so my best to you and your mom for a positive outcome.

I would believe that 25% figure because I myself struggle with how long I can continue pushing myself to work, but as with many things with pots, I am sure research figures vary. Thank you for your statistic, I always find them interesting.

I am very sorry for your pain. It sounds like every one here is saying some of the same things I would with the number 1 thing being get an attorney if you do not yet have one. Something else that may be helpful is a mediator to try to help you and your husband work out a suitable arrangement for where the children live. I have known some families who have joint custody and each parent has the children for a week at a time and alternate homes. Do you live near your parents or a sister or brother to be a support for you ? If not this dinet website is a great place and I am glad we coud give you some support. The joint custody really has worked out for some of my friends, so it may allow you and your husband to both have more time with the children. Another friend had his daughter during the school year and the mom had her during the summer and they alternated hoidays since they were going to be living n different states. Sometimes compromise on both parents parts is better than what a judge may decide so I hope you and your husband can work something out even if it is through your lawyers or mediation. Good luck to you

You are probably right, I guess I was just wondering how likely I am to improve or decline, but like so much of this syndrome, it is really unknown

I was on an antidepressant for at least ten years before developing pots and still take one. My thought would be as far as any connection that if our brain does not make enough seritonin, or what we do make is used up too quickly by stress, that perhaps that just puts us at risk for developing pots meaning our general genetic make up as opposed to the ssri drugs. By the way I could not tolerate any of the ssri drugs do to side effects so I am on Remeron which works differentlythan the SSRI drug class.

yes, his specialty is cardiology and from what I have read he has a daughter with pots . I have not read anything from Shimoda as to how her appt went. Their office told me they schedule an hour long appt. for the first visit to have plenty of time to get a history and present symptoms.

I have not seen Dr. Goodwin yet, but just made an appt. for oct. I was having trouble finding a specialist in my area which is Va. My sister lives in Pa so I can stay with her if need be. How did your appt go? I still struggle with should I be happy to be as good as I am now or should I keep trying for better. Some days are ok or ok for part of the day and others are a real bummer, which is what I hear from alot of you on the website. Hope you had a good appt and are doing better.

I guess that is what is so frustrating for me is the not knowing and the fact that everyone is so different makes it hard for drs to treat.Thank you for your response, it was helpful.

I notice that Spring and Fall seem to be better for me too. I was actually glad to see summer ending which I never thought I would say.

Thank you for your response. The statistics did not make sense to me either unless pollers answered yes to more than one question meaning 80% of people improved period and 60% said improved some but not to pre pots functioning but I noticed that does not add up to what you would think being 100% in totals. It went on to say a small percentage of people were disabled to the point they were unable to work. Yes you are right there is alot of variation. I like your idea to try specific questions poll style.

I am currious how many people with pots get better either with meds or with more natural treatments such as high salt or gatorade , how many feel they decline , stay the same or symptoms that cycle. My experience so far after about 15 months of pots is the meds and gatorade help some. If I would say I cycle, it is a very short cycle of a day or two of feeling pretty good, then back to not. I am able to work 3-5 days a week but it is often too much but I feel i need to as long as I can. My heart rate and b/p stay fairly normal on meds, I just get so tired after being up a few hours I feel like I have to lay down. Often if I work an 8 hour shift I have to lay down in my vehicle on my half hour break. Just sitting down does not help enough. Overall, I would have to choose staying the same since diagnosis and going on the meds and gatorade, better than before diagnosis and meds. I just wish I could continue to progress to feeling better and doing more than working. I have someone to clean my house and rarely cook or bake anything like I used to. I am 46 years old. I also have adies pupil which is related to autonomic nervous system problems, so my left pupil stays dialated and it seems my eyes tire easily too. I have read one piece of info that said 80 percent of pots people get better, and 60 percent of pots people get some better but never fully recover. My dr made sure I knew there is no cure, only treatment of symptoms, I guess so I would know what to expect. Current meds: Bystolic 2.5 mg @ 0800, Florinef 0.1 mg @0800 both for POTS, Remeron 30 mg @ 2000 for chemical imbalance depression, Buspar 10 mg. @ 0800 and 2000 for anxiety, Restoril 30mg. @ 2000 for sleep, Ativan 1 mg once a day as needed for chest tightness. Thank you for any info. Becky

yes, I also get "the cough" never productive, but feel it is often associated with the chest tightness and I feel short of breath alot like I need to take a deep breath. I am on a beta blocker, and a friend taking a beta blocker for high blood pressure said she thinks the cough is a side effect from the med. I can definitely feel tight and short of breath if it humid outdoors at all. No dr. has ever mentioned asthma or allergy diagnosis to me, I just assumed it was part of the pots, and maybe it is for some of us, who knows.

Best of luck to you. I am personally not one to have clutter and extra "stuff" but my daughter is and I know how hard it is for her sometimes to part with things. However, you are right, cleaning and everything just seems so much easier when there is less stuff. We recently moved to allow me to be closer to my work and town, whereas before we lived in the country and had to drive further for everything. It has been a big help for me. We also chose a house where everything I need is on one level including laundry area which has been great, so I think you are thinking realistic. We sold our house for a good price even though alot of others were not selling so my thought was maybe it was meant to be, so you could always try and see what happens. I'm sure different parts of the country vary according to real estate. Has it been hard for you to find different things to enjoy since you liked gardening so well? It has been hard for me to make the necessary lifestyle changes.

I have pots and would say the chest "heaviness" or tightness as you describe it is a very annoying and common symptom for me as well as feeling very uncomfortable. I get the chest tightness just from being up too long and find that sometimes laying down on my side helps or in a semi reclined position on my back against two pillows. I have also had it happen when I have been up and about at work and then come home to go to bed, so then it seems like the moving around to being still changes something. I also have Ativan 1 mg. that helps. Sometimes I need the Ativan every day and sometimes not at all. I don't know exactly what happens in the body to cause us this feeling, but I definitely experience it too.