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Everything posted by lissy

  1. Mine was not too bad besides the Cardio was so incompetent and he made me so angry so my resting rate was 90 and only went up to 116 and he said it was negative! My normal resting is 70-80 and standing is always 110-135 then I went to Cleveland Clinic and they also said by review of my outside TTT was normal, and I haven't had another one but they prescribed meds for POTS. I haven't really considered having another since I had all the other autonomic testing that showed the hypercirculation and pooling and a positive poorman TTT.I left it at that.
  2. Thanks Dani, I will at least go for it this week, I know how good I felt when I 1st took it years ago b4 I knew it was POTS and I also stopped after pregnancy then 3 babies later I had the full relapse so just maybe it will be my answer. I thought it was kinda weird my new family doc suggested taking this instead of the Florinef to start but I believe I may not be as severe as some others on here, because when I went to Cleveland Clinic I was told 6 months after taking the Florinef I would be better and would only need maintenance doses...So I am trying to be completely optimistic about the possibly and thats all I can do. I have also been going to counseling for the phobias it just isn't really going anywhere, may have to change counselor or something. Well see, I will post when I start and keep all updated, I pray it works:) and I'm so happy for you!!!!!Hope you get well soon.
  3. Hey Dani, Are you still on Lexapro? and still benefiting ? I did take it about 8 years ago and it changed my life in a good way...I have a new prescription now but am battling my med phobia, I wish I didn't have this fear. I was prescribed 10mg and thought about taking 5mg but maybe I should take 2.5.. I could handle the basic side-effects I just worry about something severe happening. Are the risks for severe reactions low? My doc said to stay off the PC and searching but its so hard, when I know how sensitive I have become to meds after getting sick with POTS. I know I need to try this med again (hoping to start this week) but I need to build up my courage, no-one in my life seems to understand my fear and they say just take the pill get over it! So any positive feedback needed
  4. Ok everyone When I drink a 16 oz bottle of water why does it make me pee 6 times it only happens with water or beer (*but that rarely happens:)) I know some of the meds are suppose to retain fluid right but they also raise B/P which I feel awful now when my B/P is normal, I'd rather be low. Is there another way to retain water? And is this pretty common with others? Lissy
  5. lissy


    I do notice I get extremely dizzy and feel awful before a storm comes I think it does have something to do with the pressure change.
  6. My B/P is mostly low but there are days its considered normal but I feel the worse like right now...108/77 hr 108 sitting. I have seen Dr.Fouad a few times had all the testing and didn't feel like I got more info than I already knew.I would go again just to try to get more information but she only did the autonomic stuff, I don't think they looked for causes or anything so that wasn't enough for me. Lissy
  7. I have been seriously thinking about requesting having allergy testing done, I would like to hear from those of you that have had it done (was it dangerous?) and also did you have allergies prior to dysautonomia? Or sensitivities? Is Mcad or Masto conditions that a allergist would be aware of? Totally different topic- One of my children is extremely Hypermobile along with severe asthma * does that mean that he had to have gotten it genetically(EDS) from either myself of his father if it was EDS. And can a parent have one type and a child have another or is that not possible? Lissy Thanks ahead of time:)
  8. I waited a few days to post this because I wanted to think about it full heartedly. I have been terribly sick from time to time for these 3 1/2 years so sick I was taking care of a newborn from laying on a mattress on the floor, crawling to bathe my children. Praying every night to just wake up the next day I was scared to death thinking I wouldn't be able to take care of my kids and possibly I would just die and they'd have to grow up without a mother.I lost every bit of self-confidence thinking I was Not able to take care of them or myself I felt worthless and hopeless. I had problems in all my support systems at my weakest time but you can't give up. Your kids love you and need you regardless of what your able to do they are at the teachable age a child at 12 at this day in age is almost grown. I don't know what type of people are on this site but in my neighborhood I see children aged 5-13 carrying grocery home, taking care of their siblings. I don't want to sound cruel in no way but you can't give up on them, the people around you can't be changed ( personality, sensitivity, understanding) but you have to be strong and teach your children to help you so if you do indeed get disability you can live on your own and they can know what life is suppose to be about. The only way you should be thinking about giving up your kids is if you were dying or harming them unless that is happening there is no reason. Its hard. I have 5 myself and I feel like running out the door many times but thats not gonna happen. You need to be on your own to set the environment up to work for you and forget about the values you were brainwashed to believe you have a new life now and you have to make the best of it, if no-one believes your sick get away from them but until u get some money don't let it get to you in the meantime spend that teaching time with your kids keep them away from your stressed out parents and pray to God it will get manageable. I have my kids 24/7 no babysitters, school for 3 preschool for 2 and I can say whewwwww I made it my 3 1/2 year old is the last to start school Its amazing.I wish u the best Lieze sorry to be blunt but its who I am and I only wrote this because I care and I wish someone told me this when I was my weakest. Lissy
  9. ADD Me I used to be a Big drinker seemed like I couldn't get any effect but it changed since this condition. It depends how I feel to start if I'm not so Potsy then maybe I can have a few beers with a horrible next day...If I am feeling not so great a few sips can send me over the edge and I'll still feel awful the next day. I always get hot-flashes with drinking now ,abit shaky but the brainfog goes away????.... Lissy
  10. Yes I do have neck issues maybe thats what is is for me...
  11. I also have this problem, I noticed it most when I brush my teeth its like I have to tell my muscles what to do, and they feel too tired to work. During these times I have checked my grip and push abilities and its very strong, so its not a true weakness in my case but I have been scrubbing something and had to give up because it was like the painful burning you get as if I was working out. So is that muscle fatigue? Mine isn't constant it comes and goes.I don't go to the doctor too much anymore I got fed up with getting the same answers " I don't know" or the look of OHH Boy something else... Lissy
  12. I wish My cycles seem to be shorter (24-26) days apart, last different time lengths 3 days to 7 but unfortunately they always come...They were always regular before I got sick??? So I have no clue maybe chronic illness affects it somehow. Lissy
  13. Hey all I suffer from depression and anxiety which has been a problem for many years, so I decided to make an appointment and see if meds would possibly benefit me somehow mentally and physically. The doc read over my history of emotional abuse, trauma, amongst other things.And told me I didn't need meds and I don't have depression or anxiety and my illness comes from drinking alcohol in the past. I then responded that I have been dxed with those conditions years ago accurately and I don't know how he could assume otherwise and he said I don't have the symptoms LOL I said you asked why I wanted medication and I said " I wanted to feel better" then I started naming off the feeling I have with the depression and anxiety he started writing the script...then I said well is there anything I should look out for (side-effects) he then replied "we write millions of these and if you have any side-effects it would be all in your head! Can you believe this I took the script stood in the door way and he said see you in a month.I said maybe you won't because you have a very negative attitude and your not to professional, I wanted to say much more. I was in shock!
  14. Friedbrain you can say and post whatever you like your opinion and thought matters to me whether its right or wrong relevant proven or just a hunch thats why I post to get others opinions and maybe someone has been dxed with something they might have been overlooked in my case. There are no Dr.'s on here replying to our posts I don't imagine....so just had to add that, whatever anyone has to say to me Matters! Lissy
  15. Absolutely when I became very ill which lead to this chronic state it began with starting my cycle after the birth of my last child (3 1/2) years ago... And which each one after it took more and more out of me until I was symptomatic throughout the month, I may have more energy and feel slightly better about 2 weeks before it comes so I guess ovulation time is the better time for me. All the time right before, during, and after is complete misery . One very bizarre thing I have noticed since the winter, every time I have a cycle I get a cold it appears to be a cold ( maybe allergies or something)Can you be allergic to your own hormones??? My symptoms begin after ovulation Extreme dizziness almost unable to stay balanced for long, then hot flashes, chest pains and pain under my left rib cage,craving Alot of chocolate, heavy bleeding *starting earlier every month,Fatigue more than the daily type, and then after is like completely starting over to get better like back at square one again. This goes on every month it seems like I feel every hormone changing within my body. Honestly after my last child it seems like something got reset hormonally and causes all this dysfunction.I have been tested for many typical hormonal conditions when it all began maybe it was in the beginning stages and I need to be rechecked? Any ideas? Lissy
  16. Thanks Lieze for your speedy reply I hope it isn't something!!!! And I made sure to ask if a migraine could have cause it and he said "yes"but not for that long...? Thats why I was concerned otherwise I'd be ok. I have many visual migraines hopefully he was mistaken.I will see me family doc soon their phone isn't working with all the storms we have been having, so hopefully I will reach her soon. Lissy And to add vision has been fine since it went away that day I just wanted to make sure I didn't have some eye issues causing that specific problem and I haven't had an eye exam in 7 years:P
  17. Hey everyone, I posted not long ago about the blurred vision in one eye that lasted all day till the next morning.Well I had an eye exam and many tests and the eye that was blurry has no vision problems the doc said its something in the nerve or blood that must have caused it and follow up with my family doctor to have further tests done. Possible TIA or something like that. I had my 4 year old with me (she wants to be a eye doctor:)) and I was so torn up inside and worried and also had to drive home in 95 degrees with no air in the car. I just don't know what to think right now, I'm so worried.Is there a certain condition that causes dysautonomia that affects the vision like I'm speaking of? I know about the MS but I highly doubt that... Lissy
  18. 1.Fatigue 2.Chest pains 3.Dizziness (off balance while upright) 4.Headaches with the auras, blurred vision, numbness 5.Dealing with a different symptom every day I wake.
  19. Sue That blurry vision in the morning actually just happend to me a few days ago and scared me so bad it was better the next day but just want to chime in on that. I see an eye doc monday so I'll see what he says if anything...
  20. Its kind of difficult to type this but here it goes...I woke up today and after 10 minutes my left eye went blurry and feels sort of dry.It has happened in the past but only would last 15-25 minutes this has been going on for hours now (2) It really scared me I called a local eye doc to see if this was a emergency and the nurse said it could just be a migraine and if it doesn't go away they will get me right in on Monday. I do get migraines with aura (lights and magnificent effects)lol but this is really terrifying to me, has anyone had this and how long did it last? My vision is very good on a regular basis. Any thoughts? Lissy
  21. Hey everyone:) I don't post to too many post because I have caught myself becoming complusive and only focusing on HEALTH and nothing else... Anyway I had to reply to this because it just fits my current situation, I have had 2 counseling sessions and I am going to take a psych test because I have developed some pretty major phobia regarding Meds and foods and I have lost ALL trust and faith in Medical field completely, so far I had an old DX of GAD and major depression and just since going she said possible PTSD with the phobias, despite all those DX my BP and heartrate I know cannot be caused by a mental issue but I do know that the constant state of brainfog and disconnect,severe memory-loss I feel may not actually have to be caused by dysautonomia it could be PTSD and if I can get some improvements with those issues maybe I won't feel as bad...SO for this topic yes I have felt crazy at times and also wrong but my end thought on it is that I have many problems going on medical and mental and I am being openminded to have a better chance at becoming better and healthier in every way. Lissy
  22. What has caused the least problems and symptoms??? I need a tooth pulled since last year and I'm terrified or the meds...please help!!! Lissy
  23. Yes I also get them sometimes with the headache sometimes without mostly around my cycle and also some other slight numbness disorient ion I just don't feel right... and its very scary its never happened in public I always have warning signs about 15-mins ahead of the full blown aura. Is this pretty common finding among dysautonomia? Has there been any studies or research on the part of the brain thats being affected?Or is it just about the constriction? Lissy
  24. I am extremely oversensitive to social events/ movements/ noises /lighting pretty much everything, and I have formed an anger about it which lead me to start desensitizing myself subjecting myself over time to the triggers and it has been working. When I 1st became ill I couldn't even ride in the car with music on the movement of traffic the noise was just tooo much so for the last year I have been wearing headphones at home listening to music kind of loudly and have taught myself to relax and it has really worked. I'd get the same feelings while in groups (socializing) I have had to build up tolerance slowly and tell myself * You are fine * the most harmful thing I have realized is when I feel wiped out I can't rest for too long I have to stay active sitting up instead of laying and not avoiding everything. I feel 60% better during this past 2 weeks than I have in a long time I have been pushing and pushing myself and I know if you have mental strength and determination you can progress immensely.Whatever you do do not avoid situations unless they are dangerous, uncomfortablity sometimes isn't so bad because if you end up like I was avoiding everything I think thats more harm than good emotionally which affects you physically. Hopefully this encourages some:) I actually have been walking around Super walmart and getting some sun *recovering from a sunburn:()I stayed outside having a yardsale for 8 hours 2 days ago and I was so amazed by my activity lately. I hope others are having some improvements too and I'd love to hear about it. Lissy
  25. Well I was told something totally different once it builds up in your system (say 6 months ) you can have maintenance doses like during cycles ,extreme stress on your body ,and during the times of having a virus... And I was told this at Cleveland Clinic Lissy
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