k&ajsmom

Over the last week or two Ive developed these twitches, not like u get in your calf of arm when your muscles are tired, but almost like muscle jerks. No pain or sensation with them just movement. For example....using the mouse on my laptop my hand jerks and cant get the arrow on what Im aiming for. These are all over, legs, arms, hands, stomach, chest, everywhere but my head. Wierd!! They are becomin very disruptive in everything Im doing. Anyone else have this or could it be side effect of meds? Gonna talk to the doc next week but just curious if anyone has experienced this. Ps. I get hundreds of them in an hours time

Thx MissTraci for the feedback. I was kinda thinking that but I havent been on here long so I just wanted to make sure....=))))

YES!!! I have extreme anxiety when going somewhere or really doing anything upright. It was much worse in the beginning I think because half of what I thought was anxiety, was actually adrenaline and low bp. Ive been on zoloft for a little over 2 months now and it has helped alot of that shaky anxious feeling that I think was a physical response to my nervous system being out of whack. I still have massive anxiety over going out because of the heart issues,low bp and fainting, however the zoloft is giving me a bit of bravery to try to push past it. When everyone is trying to push me to get out more, I have to remind myself to do what I can, when Im ready and not a minute before, because the stress of worrying about the anxiety and getting out was becoming a mounting problem. I had to take the pressure off myself to help reduce the anxiety. I do push myself to get out and do a little bit but like you it effects my symptoms as well and have to retreat to my couch for awhile. SInce this started with me, Ive wondered while Ive read some posts on here, how some of you amazing people function and work and live.....I folded like a deck of cards when it hit me and I wish I was brave enough to get out and function with my pulse racing. Im scared to even move sometimes. eek I think I need a therapist too lol (seriously)

SImple question, WHen posting a topic that may have been previously disscussed maybe months or years ago, is it preferred to post a new thread or bring back the old post and comment there if its relavent in subject matter to the old post.....sorry if this is a "duh" question I just dont wanna be redundent =)

Hi Matt, =) On good days; lying between 60-90 sitting 80-100 standing 100-180 standing varies wildly but lately been settling around 130 as long as I dont exert myself ThX

Thank u guys so much for the links and feedback, its so very appreciated =))))

Interesting post, mine is always narrow. Usually below 20,sometimes as low as 10 and never ever above 30. My bp runs very low and seems the lower it is the narrower the PP is as well. Bp usually runs around 84/68 ish. Meds seem to lower heartrate a minute amount but have no effect on bp or pp. Even when I was hospitalized and IV'ing and on Midodrine and florinef, my heartrate became normal but bp stayed the same. Any ideas? It would seem to me thet hypovolemia would be ruled out as cause of low bp and pp then...?

Laying 65-80 sitting 70-135 standing 120-180 varies greatly without any precipitating factors (that Im aware of) Not on any BB's due to BP not being able to be kept up, this is after treatment with meds. and methods listed below

Hi Jennifer, So sorry to hear what your going through and your def. not alone. This forum is wonderful!! I def. can feel your pain and I am still greiving this condition and the "old" me. I have barely been able to leave the house in the last couple of months, but slowly I am seeing a light, even if its only a glimmer. I have cryed countless days over this hopeless feeling and the days I dont cry Im just too tired to. There's a lot of hope reading all the testomonies on here and with knowledge is power. It sounds like you have a great medical team and doing a lot of positive things. I can relate to the insomnia completely. At first I couldnt get enough sleep, could barely make it through dinner. Then for a while I couldnt go to sleep till wee hours in the morning of the next day and only stayed asleep for about 4 hours. Now I can go to sleep at a normal time but I only sleep for about 2 hours at a time and at around 2 or 3 am thats it and Im wide awake all day, though dreadfully fatigued. Under another post"afraid to sleep" theirs a lot of bedtime symptoms mentioned that make me think there is a connection to the insomnia. I had a sleep study done when I stayed at the hospital ,still awaiting the results from that. Im thinking alot of us have some sort of apnea going on. Good luck with yours and hope you find some answers...=))

CONGRATS!! That is truly inspiring, good luck on your journey!!

Hi, My first symptoms were at around the age of 2. I had severe GI issues, allergies, low bp and started passing out everyday by the age of 6. I remember having to sleep on my moms floor because I would wake up and not be able to open my eyes from the histamine and then try to get up and black out...I didnt have tachycardia and the plethra of other symptoms till my 30's though.

I get very symptomatic on my left side with pvc's and pac's.When I change positions (standing to sitting and sometimes sitting to standing) get a feeling of "overfilling" and really hard beats that are slower and def. take the breath out of me. Other than that i have no clue...sorry your going through a bad spell and I cant be more help....=(

HI, I know myself, its hard to get excited and appreciate a good day or moment even, because we are in survival mode and its hard to switch that off and even harder to switch it back on once weve let our guards down. I had a good"ish" day today although not functioning I still feel better than I did 2 days ago and I wouldnt acknowledge it to anyone aaround me cause I was scared it would disappear and then Id have to explain I feel bad again to everyone and I get tired of hearing myself say it. ugh I still think Im grieving it a little, I thought I had outgrown this and then it hit me in my 30s when I have too much to do to be sick and it laid me out cold....SOmetimes I think Id be happier if it was something more serious but could be fixed with a medicine or a surgery or something.I feel like a lab rat and I get really upset that tommorrow this "lab rats" experimental medicine may not work. My daughter has a concert tommorrow but I am terrified to go, even after having a good day I would still be becase the nature of this condition is just so unpredictable...anyways, rant all you want, I think I just did quite a bit myself...lol thx for the post, it makes me feel better Im not the only one feeling this way, even though I hate that do as well =(

Thx Matt, I am printing this out to take to the doctor with me, I used my mom as a control and it was a dramatic difference. I noticed outside they dont constrict properly and this could explain the sensitivity to light, I just didnt put 2 and 2 together...lol thx again!!!

Ive been on zoloft and florinef for about 2 months now. Havent upped my does of florinef but I have over the last 2 weeks upped my zoloft until I reached 100 mgs 2 nights ago. Today my heartrate hovered between 100 and 125 all day without any real physical activity. (aka online christmas shopping lol) This is great and I was encouraged, although my bp was crashing considerably. This evening I checked my vitals again and heart rate was 88 standing!!!!! I havent seen a standing heart rate this low a loooong time. Bp still low (84/69) but better and seems to be fluctuating a lot, maybe its triyng to regulate itself. It doesnt seem to be helping much else ie; pvcs, overfilling "feeling" of heart with posture change, but maybe it will eventually?? It also makes me ravenous all day and night, at first it was great cause I had lost so much weight and missed food but now its getting a little much....Id hate to switch meds because of this especially if this trend continues with tachycardia. So I am wondering if its the zoloft or florinef, has anyone taken a ssri and had it just kick in overnight like this?? I hope I dont jinx myself and it continues tommorrow. Little scared to get my hopes up just yet.... Also has anyone experienced severe insomnia with florinef or zoloft?? I cant figure out which one it is but I cannot sleep to save my life (yyaaawwwnnn) TIA {{hugs}}

I miss my caramel macchiattos ,super duper sad face lol Before the tachycardia came into play I would drink my 2 to three cups of strong coffee everyday to keep my bp up, It always made me sleepy but I assumed it was because I was so dependent on the caffiene I didnt feel its affects anymore and with it being warm and increasing blood flow to the tummy it made me sleepy. Ive been caffiene free since june and the other day I had half a cup and it didnt effect me immediatly but later i did notice I felt jittery and bit more tachy, Im always sleepy (except at night) so I dont know if it had any effect there. My fiance brought me a cup of decaff pumpkin latte this morning...AMAZING lol although I think Im not handling the sugar well anymore, I took a sugar crash nap about an hour later... always something. I think our nervous systems are just wacky and react unrationally sometimes (or all the time) and everyday is different. sorry cant be more help =(

Hi Jk, I was advised by my doctor to wear one,I do syncope and near syncope frequently and work alone alot, but to be honest even if I didnt Id want one because it makes me feel better that the emts would have a clue what could be wrong and how to treat me....whatever makes you feel better and retain peace of mind. My spouse can never remember what "I have" or meds Im on so i feel better having mine. They make some really cute ones now to=)) Take care {{hugs}}

This is something Ive been battleing with. Thx for posting it! My spouse is very supportive and very involved however he is a veteran of Iraq and Afghanistan so he is suffering from brain injurys and ptsd and gets very short from the stress. I used to take care of him and now the rolls are reversed and its definatly taken its toll. My mom is the only family I have and she is supportive and understands but she has days where all she wants to do is push me...and tell me awhat I need to do, and if it was her she wouldnt let it limit her. She is very competitive with me and it can be very frustrating to say the least. Shes one of those people thats a "topper" and if you have a stubbed toe her foot is broken...lol If I manage to take take a shower AND blow dry my hair they always say, "oh looks whos feeling better",...now you can do this chore and that..." if only they knew how many times I had to sit down in the shower to get through it grrrr Sorry to vent on your post by Ahhhh that felt good to get off my chest....lol Bananas, I totally get what ur saying, sometimes it would be nice for empathy instead of sympathy, agood listener is hard to find, we dont always need advice just a shoulder....I get so frustrated with the "r u ok's" every 5 minutes around here but when I need to vent or grieve a little they say suck it up it could be worse, BUT i know that and sometimes I need to work through the lingering thoughts of it could be better....argh

Hi Matt, I looked into hippus and pupillary fatigue, it looks exactly the same, Im gonna ask my doc what he thinks in two weeks could just be another sign my nervous system just off I geuss, but is very wierd, I experimented with light and they are def. contracting wildly and never constricted quite enough to be normal they are always dialated too much. Just another party trick for us I guess lol Hi Dani, Yea its def in both eyes, i had no idea until looking it up it could be related to pots, but gonna make sure since my vision has deteriorated quite a bit since it started....... Thank for the feedback =)))

thx for the tip about adies, thought u were on to something but it only affects one eye and this is in both.....just another thing I can say its not though =)

so sorry to hear your having a hard time...=( my gi dismissed me as well...without anything but a colonoscopy and "theres nothing I can do for you".......sometimes I think when a doc does this its so we can find a better one who may hold the answer to something that may help. My pcp is taking better care of me than she did so Im kinda glad....hope you find closure to that and hope in a new doctor...hang in there!!!

The eye things started before any meds (except zyrtec and claritan). I am treating the hypokalemia with Klor-con and very high potassium diet, the hypolipidemia I am not treating with anything except a high cholesterol diet and waiting to go back to the doc and follow up on that. List of symptoms is long lol but ill hit the highlights: Chest pain and spasms, doctor suspects chest pain to be cardiac (elevated cpk mb) costochondritis, fairly constant for a few years, x ray shows many many fractures some old some new to ribs increased palitations and pvcs that feel stronger and more frequent SYncope and blacking vision (dizzyness with that) get cold and clammy then hot like someone set me on fire,more often cold than hot though.. always low body temp around 96 to 97 feet and hands always cold except when I sleep cold hives when outside increase in severity of asthma and allergy attacks everyday tachycardia CONSTANT, I hate this one!! almost always above 130 when standing and 160 and up when just a shower Irregular heartbeats with positional change and heavy hard beats intermittingly A few episodes of bradycardia that Im aware in sleep Sleep apnea is suspected Pupil dilation worsening of nearsightedness and night vision is gone almost completely gone SEVERE headache and neck pain, also joints hurt hips popp out of sockets slightly as well as wrist and ribs Headaches make me feel "dumb" ( donyt know how else to explain this lol) crushing anxiety tremors and feel drunk and withdrawn a lot pre term births to both children (mild anemia during pregnancies) Gi issues, severe d and improper digesting of foods(eek) Insomnia is getting worse, 24 to 30 hours before I can sleep but once Im asleep I cant wake up) ok i think thats enough...sorry lol I have seen improvement in my tummy with immodium and vinegar with probiotics, but cant miss a day and still is quite distressing. Florinef and zoloft help with anxiety and tremors but not much else. and claritan and zrytec help the asthma and allergies btu not all day, also occassionally see a heart rate decrease after my zyrtec but its really not significant or consistant. Ugh sorry about the novel, I am going to look up adies right now, any feedback is great. I know something is underlying I just dont know what direction to push my doc into....lol thx again =))

Hi everyone, So in the beginning of this flare im in, I got up one night and had my first feeling of an "elephant" sitting on my chest, I got up and stretched to see if it was my back went and got a drink and then went to the restroom. I looked up in the mirror and my pupils were dialating rapidly from large to small. I shrugged it off as just a wierd thing Ive never noticed. However it is still happening 7 months later, not as bad but pupils "jump" when dilatating rapidly and cant seem to find the size they need to be. Ive stumbled across that this could be a sign of adrenal insuffeincy, however Ive read adrenal insuffiency isnt real unless your adrenals are diseases. Im confused, is this a real indication of something or just a physical abnormality Ive never noticed before. Im not worried about it just trying to leave no stone unturned... Anyone else do this or know anything about it?? Thanks {{hugs}} I cant seem to get the link but if you google "unstable pupil reflex" on u tube theres an example of what Im talking about.

Aww hes a pretty macaw, I used to have a quaker who was such a brat lol...Ive been stuck at home for 2 months now and I totally agree animals can help with the emotional aspect of things. We have a zoo here. 2 cats, one is a maine coon so he is as big as a dog and has been my cuddle buddy, and my dog has been my exercise lol...they really have been the best support because they dont judge and always seem to know when I dont feel good ...=))

I used to work in the medical field and transcribed doctors notes all the time, and it is actually very common to reference a patient in that manner, atleast with the docs I worked for. More common is " a young attractive well groomed female". I always kinda wondered about that myself...lol I have always assumed it to mean that the patient has no physical abnormalities and looks healthy in appearance but i cant speak on behalf of your doc and can understand what you feel uneasy about.