Mrs. Glass

Yes, this is a common occurance for me. I just cant seem to get the temp right for me. My husband is very cold natured, so it is horrible for us. I am either freezing or so hot that I feel like I cant breathe. My docs thought that I might have a viral infection, but nothing has changed. I have to have a fan blowing on me at night just to be able to breathe. It looks like we will probably have to have seperate bedrooms. But I am not ready for that just yet. I do not know about the low grade fevers. Every time that my temp has been taken it has always been low. I do not know if it is a pots symptom or not as I am new to this also. Hopefully you will find some answers. Hope you start to feel better. Vanessa

I altnernate between being really cold to having a low grade fever. The doctors have been searching for a cause of the fevers, but sometimes my temp is way below normal and my hands and feet are freezing cold. Then other times I break out in a sweat for no reason. I'm thinking maybe this is another autnomic symptom. Does anyone else have this and occaisionally run low grade fevers?

Just wondering, Roselover

I was just wondering if anyone else has this same problem. My b/p drops even while walking across the room. It is not just when I stand up. It drops sitting, standing, laying down. It doesnt seem to matter. My docs keep reffering to when I stand and I cant seem to make them understand, that yes it will drop upon standing, but it also drops at other times. Everytime that I have been in the hospital, it has dropped just while laying there. I would feel like I was going to pass out just laying in the bed. The nurses freaked out but the docs didnt seem to even think anything of it. I was not on anything that would cause my b/p to drop, but it did. Of course I do have different docs since then, but I still cant seem to make them understand this. Any info would be helpful. Thanks Vanessa

Oh yes they are common in me. So far I have tried everything the docs said to try and nothing has worked. But they are worse since the docs took me off my meds. I can not take beta blockers either. My b/p drops so drastically all of the time that they are afraid to even try them. Hope you get some answers. Vanessa

Can anyone who has tachy surges all through the day every day let me know please? Mine are getting more and more frequent. Also, I would like to know what helps. I can't take beta blockers because my bp is too low.

thanks,

bamagirl

Oh yes, but I do not always have a tachy spell, Sudden sounds do it to me also. If I move too quickly also. I cant explain the feeling either. I just know that it does feel wierd. I can not stand for the tv to be up to loudly, loud talking, and even most music will send me into a spell. I havent listened to music for months now. I very seldom turn on the tv, I mostly like it quiet. I cant even stand it when my little dog starts barking. Hope this helps Vanessa aka Mrs Glass

Does anyone have a strange feeling come over their body before a tachycardia spell? I get this weird feeling right before, then my body tingles all over and then I have a full blown tachy spell. Sometimes I will get that strange feeling and never get the tachy. I am not anxious or anything, it's really confusing. Also, anyone sensitive to sound? If my phone rings, I jump out of my skin!!

Thanks,

Bamagirl

I want to thank all of you for your kind words. If I did not have this forum I would probably lose it. Just reading the responses and seeing and knowing that I am not alone in this helps. There is so much going on right now that I am so stressed all of the time. The docs have told me to stay out from under stress, because it seems to make my symptoms worse. EASY FOR THEM TO SAY ! I was hoping that my whole family would be home for Thanksgiving, but my son will not be here. He got himself in trouble and is now in jail, and will most likely be there for another year. It breaks my heart to see him there, but he really has a good attitude about it. He told me that he got himself into trouble and now he has to pay the price. But it still breaks my heart. That on top of everything is just too much. When I read all of the responses, I just cried, to know that perfect strangers can care so much about each other is so great. I just want to thank everyone again. Vanessa aka Mrs Glass

Here I am up at 3 am again. I have just been sitting here replying to some of the topics, and trying to perk myself up. Its not working. I feel totally isolated this morning. Even though there is always someone with me, I just cant shake this feeling. Maybe its because it is Sunday and I cant even go to church anymore. I dont know. I just wish that I could sleep. One night last week I actually slept 11 hours! I was shocked, but then when I did get up I felt worse than I ever did. I just want my old life back! but thats not going to happen. I know that I am just on a pitty party, but I cant shake it. I heard my husband talking to my daughter yesterday, and at his work they have a wish list up. You are supposed to sign your name and put up what your Christmas wish is, well his is to have all of my medical bills paid. I know that he didnt do it to hurt my feelings, and I know the pressure he is under just to pay the bills, but I know that if I wasnt sick he wouldnt have to work so hard. He works 2 jobs and does side work and works on our house, and does most of the cleaning. My wish would be to take some of his pressure away. This morning I just want to scream! Just Get Me Out Of This Nightmare! Well I guess I will go for now. Even voicing hasnt helped. But I know that all of you understand what I am going through. I keep thinking if I could just get a little more sleep then maybe I could start thinking a little more clearly. Thanks for letting me vent. Vanessa

Sorry you are having a tough time of it. I wish that I could just reach through cyberspace and give you a big hug. I think I am still in the denial stage of it. It hits me sometimes, but then I shrug it off. So far the hardest thing for me to do was to give up my drivers license and get a handicapped sticker. I cried all day, every time someone said something to me, I would burst out crying. I have so much guilt from being sick and my family making sacrifices for me that I just want to scream. I know that I am rambling on and on ,but my heart goes out to you and I just wish that there were words to take your pain away. But there is one thing that I do know. That this is probably the best site that there is for people like us. We can come here and everyone here understands just what we are going through. We know that there is that support for us. I truly hope that you start feeling better soon. Vanessa

Yesterday I cried all day and told my husband I can't so this anymore. I feel like crap all the time. My vision is blurry and dark, I have horrible burning and stinging nerve pain in my skin, my heart races all the time, even while lying in bed, I get terrible migraines. Nothing helps with this stuff. My whole life is falling apart and I am lying in bed watching in go down. I can't work, I can't be the Mom or the wife I want to be. And the worst part is, no-one or no treatment will make it go away. I have been in bed for two weeks now and keep hoping tomorrow will be a better day. That tomorrow never comes. I have been battling this for five years now and have finally reached my breaking point. I'm tired of being scared all the time. How do you guys keep going knowing that every days is going to be a day of disease and pain?

Sorry for the negativity, I just know you guys understand.

Way to go! Congrats ! Proves there still is life out there. Vanessa

I wanted to share with all of you my good news. I am getting a big award today for doing some volunteer work over the years non-profit organzations, one which provides career support to women and another which provides counseling services to children and families in need. The funny thing is that I took on more of this works after I got POTS, because the volunteer work was less stressful then the regular work I do. So if it weren't for POTS, I probably wouldn't have gotten the award!

My day is already off to a good start. I put on my suit this morning which I had bought a few months ago, and the pants practically fell off. I've been trying to lose weight for more than a year and it looks like it has started to work. I have been working hard to try to get back to the old me, and things seem to finally be moving in a positive direction. I feel excited, but scared at the same time, because I know that things could come crashing down at any moment.

The ceremony is tonite from 6-8. The presentation will be 20 minutes and the rest of the time will be cocktails, which means I will have to be on my feet. I am a bit nervous about the whole thing, but hoping that adrenaline will carry me through. Wish me luck!

Hi Terri, sounds very familiar to me also, Sorry you have to be here, but this is a great place to be for people like us. My diagnosis is not complete as of yet, still more tests to come. I guess I am one of the lucky ones, my children are grown. But then I am glad they are, because I am one of those whose symptoms are debilitating. I am new to this forum also, and it has helped me just knowing that there is someone out there who understands what I am going through. Hopefully when some of the stress leaves you will start feeling a little better. I know in me when I am stressed my symptoms are worse. I guess my body is wierd though, because on most mornings for a little while anyway is when I feel my best. This morning not included. I can finally have a little relief of my symptoms. So I sit at my computer and go on this forum until my eyesight makes me get off. I am sorry for the loss of your sister, and all that you are going through. I am sending you a great big (((HUG))) from me to you. Hang in there, and I'll talk to you in cyberspace again. Vanessa aka Mrs Glass

Hi everyone, my name is Terri and I'am a 35yo mom of two beautiful children 7and 4 yo and I'm a nurse.I recently have been having some really weird symptoms after alot of stressful events have occured in my life (first of all I was injured on the job helping to assist in lifting a patient, herniated a disk with protrusion on my sciatic nerve, very painful!! Still having problems, second my brother was diagnosed with lung cancer and given 6-12 mos to live , then unexpectedly my precious sister passed away without any signs of illness, not to mention the same day we buried her my 4yo broke two bones in his leg while jumping on the trampoline and was put in a cast up to his thigh and had to be carried everywhere he went for 2 weeks. This has all happened since the end of august. I've also been going to school full time to get my BS degree in nursing and working full time, WHEW!! So needless to say the stress levels are through the roof. Then one day I just woke up DIZZY and couldn't hardly walk across the floor. I've had some dizziness every since the birth of my last and was extreme for about 6mos post partum. Never could diagnose what was wrong they blamed it on menieres disease even though the tests never really confirmed. Lately especially first thing in the morning or when I get up throughout the night to use the bathroom( which I do alot) My heart rate will go up to 160-180 bpm, just while standing for a few seconds. My b/p has always been low but after pregnancy runs about 100/60 or 90/50. I've seen a cardiologist because I also have had problems with heart skipping, fluttering, etc. I wore a cardiac event monitor which showed runs of Pat's and and some PVC'S , and PAC'S. But what also bothers me so much is the weakness I feel and wobbly legs. My left leg shakes when I stand and I just feel horrible in general. My cardiologist diagnosed me with POTS. I haven't really noticed a significant drop in B/P when standing (THANK GOD!) and I had never heard of POTS until he mentioned it . We never learned about it in nursing school. I've also been having panic attacks as a result of the heart palpitations. I tried taking anti-anxiety meds, but I am so sensitive to medications that they make me feel really spaced out even in low doses, which then makes me panic because I feel so weird. My GP says that he thought I have panic disorder due to Post Traumatic Stress. I'm really not sure what is happening , all I know is I WANT MY LIFE BACK !!!!!! Sorry to be so long winded, but does any of this sound familiar to anyone out there with POTS? If so does it get better? Please reply ASAP because mentally I'm a wreck and I have a family who is counting on me to be well.

Thank you so much for listening,

Terri Lynn

I just want to thank everyone for their input. I was so freaked out about this. I tried a shower yesterday,and could not get it cold enough. My daughter is going to buy me a shower chair, and my husband is going to enstall a shower head that has a hose on it, cant think of what its called right now. I am just so frustrated because that is just one more thing on my list that I cant do by myself anymore. No more hot baths for me I guess. What is really bad, is I live in the desert where it gets pretty hot. I guess I will be spending my time indoors this summer. I am not going to move. As bad as my little town is it is home, and my family is here, I am rooted. I will just have to make adjustments I guess. But thanks again, I am really glad to know that I am not losing my mind just yet! Ha Ha . Vanessa

Welcome, Docs dont know what has triggered my problems. They think it could have been a car wreck that I had a little over a year ago. I have not been totally diagnosed yet. Partial diagnosis here and partial there. Will be glad when total diagnosis is done. You have come to the right place, great bunch of people here. Lots of info, and hugs. Hang in there. Vanessa

Hi everyone! I am 27-year old student, comming from Slovenia-Europe.How did you get POTS? I guess, I got mine with overtraining with weights, while preparing on fitness contest. My tranning programe was 10-12 workouts/week- half cardio, half weights. It was too much for me and I just broke my nerve and immune system down. When I realised, it was already too late. How about you? Does someone have a simmilar experience?

Bye, Primo?

Actually, for me most mornings are the only time that I get any relief. I only sleep about 3 to 4 hours a night, even on sleeping pills. But the normalcy does not last long. Now if I have had a bad night, like waking up gasping for air, then I am terrible all day, but on most days by early afternoon I am shaking all over, and everytime I move I have a dizzy spell from #### I hate to see another day come, because I know that it is just going to be the same or worse than the day before. My only relief seems to be laying down, and then that hurts my back, because of laying most of the time. I will be glad to get back on my meds, so hopefully some of this will let up. Vanessa

Does anyone else notice that after waking up in the a.m.. or taking a nap their symptoms are worse than other parts of the day???

Thanks for the info, I did not know any of this stuff, I am going to start keeping a journal to see what is setting off my heart. But then I also have brady so it may be a little difficult. but thanks again. Vanessa

If an explanation will make you feel less nervous about it: when you develop dysautonomias, the whole adrenaline and chemical feedback system is highly sensitive...any little thing may cause even a little extra adrenaline ( even if you dont "feel" jumpy or nervous--it can be smells, noises, something brushing against your skin...anything that is stimulating) then that little adrenaline for the "normal" person is ignored or recycled...for those with ANS issues, its enough to set a whole bunch of "stuff" in motion---heart rate and blood pressure changes, etc. Sort of like setting a motion detector on High...usually only things within 2 feet of it will cause the light to go on...but on very high any breeze or object within a yard will cause it to go on...your "motion" detectors are on "high alert"...they often calm down...and return in waves...sometimes to a pattern. Try keeping track with a journal. You may find that various foods/diet, stress like exams or family events; noises etc are all causing stuff. Then at times they wont. The lucky ones find a pattern and can help themselves to either lesses the reactions OR just be calm knowing its "one of those things that happen to me"

For the short term some have been helped by relaxing breathing and other relaxation exercises...it may help the reactions to ease up faster! There have recently been posts on this...try to search for it.

With my tilt table test, they strapped me in and hooked me up to an ekg machine, and took an ekg every time that they raised the machine. But then it was in an old hospital. Vanessa

Tilt Table is scheduled for Nov 28th. This is going to be my third tilt table...i have had a neg result, positive result, then borderline (?) result. I dont know what the borderline result was all about but since my symptoms have gotten alot worse my neuro suggested i go to get anther test. Oh i do have a question....one the first 2 tilt tables that i had at boston medical they use a helmet and stuff however the third one i got they didnt use one but they put electodes on my hand.....are there different types of tilt table tests out there?????

I just wanted to ask if anyone had worse problems while and after taking a hot bath? I have always taken hot showers and baths, but last night when I did, boy was that the wrong thing to do! It seemed like my symptoms got 100% worse, I kept putting cold water in the tub, and letting out the hot water, but could never get it cool enough. I felt like I was going to pass out. My head was spinning, I felt nauseous, and I just knew that I was going to pass out. I was even shaking all over like I had the chills, but I was so hot that I could not stand it. I finally called my husband to help me out and went to bed. Needless to say I did not sleep very well, and when the symptoms let up at 3am I finally got up. It was scary! I have always used baths to help me relax and now I can not even do that anymore. I was just wondering if anyone else has had this problem, or am I just wierd or something? Vanessa

I was just wondering how hard it is to get in to see a doc at one of the autonomic clinics? What is the process of going about it? The closest one to me is the Vanderbilt Clinic in Nashville. I am so sick of trial and error from docs who do not know what they are doing. When I went to the hospital for preop testing I had to explain in detail what was going on in my body. Now the day of the surgery I will have to go over it all over with the anesthesiologist (spelling?). I keep wanting to give up on the doctors but my family wont let me. I checked with my insurance and they told me as long as the doctor or facility was in my network,that it did not matter where I went. I could go anywhere in the US for treatment and it would be covered. Vanessa

This is going to be a strange question, but what is pilates? I gather it is some form of exercise but I have never heard of it. Vanessa

Hi,

I don`t know if the pilates class is good for my POTS and Fibromialgia, because when I finish the class I am very tired and I can`t do anything more.

good luck with the testing, hope you find some answers. keep us posted. Vanessa

Hi, I had an apptment with my neurologist at Beth Israel Deaconess today and he decided to go for another Tilt Table Test and decided not to put me on any more meds until we get the results of my vestibular battery testing. I am going to keep you guys posted, I go for my vestibular testing next Wed. Hope all is well with everyone!

Hi Jessica, you have come to the right place. Great bunch of people here. Lots of info, and support. Lots of hugs just when you need them . Welcome, Welcome. Vanessa

Hello Everybody~

My name is Jessica T aka dream and I am new here. I am sixteen years old. I am so excited to be involved in DINET. Everyone seems so great here.

Jess

sounds like a great companion, at least you can sit down, before you fall. My dog is pomeranian, my closest companion. follows me everywhere. only good for lots of love and companionship. would be totally lonely if it were not for sandysue. she is totally devoted to me and have only had her for a few weeks. just meant to be i guess. vanessa

hi,

like my sign in name ,its my dogs name.when i start geting or realy before i feel it "dizzy, pale, short of breath and pass out" the dog starts barking and pulling at my cloths ,shes 110 pound mutt.so family has stoped looking for me just look to see were dog is.I have lost my id in many ways.

I could not tell my family how scared I am of having this surgery, so I am telling the only ones who will understand. After fighting with my insurance company for days, and finally finding out what the problem was with them, my back surgery is finally scheduled for a go. I am terrified right now. I know that I have to have this surgery, I can not live with this added pain anymore. I mean what if my b/p plumets during surgery. What if I stop breathing. I mean my b/p goes down without any notice, and sometimes I wake up gasping for air at night. I can't take the florinef or the midodrine until I can stop taking the pain pills, because they were causing my b/p to go up to high. My doc told me it was probably a combination of the three, but then I read on this forum where people are on these meds and still take pain meds and I guess they are doing ok on them. I have tried my meditation this morning, read a lot on the forum and even replied to several, but the fear will not go away. Oh, I wish that I would have stayed home that day, instead of going with my daughter to pick up my grandson, then this never would have happened, and I would not be facing surgery at all. At least my surgeon is an expert. That helps a little bit, but he is not only going to fix the problem, he is going to probe to see why my spinal chord does not show up on the MRI after a certain point. He said that it could be a glitch in the MRI, but he wanted to make sure. One thing that scares me is he kept saying that he was going to check the abnormality in my spine while he was in there. It will not be on an outpatient basis like originally planned,now I have to be admitted to the hospital. I go today to get all of the preop tests done, and he wants me off of coumadin now. That is going to be over a week again, and every time that I have to go off of it without the Lovenox shots, my liver starts to act up and it actually swells, but the shots are almost $300 even with my insurance. My PCP told me that it is a big risk, but I have had to do it before. So I will do it again. I am so thankful for this forum. I can vent to people who knows what I am going through, and they understand. It has helped me to deal with everything a little bit better. My therapist told me that it was a good idea for me to keep up with this forum. Sorry this is so long. and thanks for letting me put my fears in words. Vanessa

Docs have not put me on anything for Tachy. It has gone up as high as in the 150's but still not meds, because I also have Brady, some times it is as low as in the 40's. I stay thirsty all of the time, does not matter if I am having a good day or bad day. I am drinking something all of the time. If water does not do it then I keep trying until my thirst is satisfied. Sometimes it works sometimes it does not. I can not exercise at all. I do good just to walk across the room. Love my spider cane, has kept me from falling on many occasions. Used to walk mornings and evenings everyday. At least 2.5 miles each time. Can't do that anymore. Vanessa

I take toprol xl and my resting rate on a good day is in the 80's but lately it is in the 90's and getting up 120 and moving shoots it up into the 130's/140's.

What about thirst? Anyone notice an increase in thirst during a bad time? I keep drinking and I am still thirsty, what is with that. From all the adrenaline?

How can one exercise with that! Last week I could exercise this week forget about it

Stacey, I just read your post, and my heart goes out to you. You are grieving the life that is lost to you. What you are going through, is normal (or so my therapist has told me). A person that is continually ill, and can not do just the normal things is going to grieve. I know that life is not fair. I think sometimes that why could this not happen to bad people, the people that go around hurting others. Instead it happens to people like us that would not hurt a fly and just want to live a normal life and take care of their family. I have only been going through this just over a year, and still am going through the testing phase,and most of the time I am scared, crying, or so depressed that I can not even think. We are all here for you, even if it is just in cyberspace. I also hate going to new docs and have to repeat the same thing over and over again. I told my daughter that I was going to make a tape and send to new docs for them to listen to on the first visit, so I would not have to go through that again. But I haven't yet. Hang in there, and when you do get the strength to throw a pillow, then just do it! A great big bear hug from me to you!

Vanessa

It is 10 years ago today this illness brought me down and into my house and bed. And still 10 years later my world mainly exists of this room and this bed and trips to doctors. How can that be possible??????? I was not able to sleep because I have tried to not think about what 10 years really means but last night it hit me and I just can?t believe it. This can?t be a life and to be honest I am even to weak and to headachy and just to sick to really type and scream what I want to. I hate this, I hate feeling like crap all the time , I hate people not understanding, I hate the time I have lost, I hate not feeling like me, I hate pain (duh), I hate that I am here alone while everyone else is enjoying life. I hate that I can't even walk to the fornt door without almost fainiting on the poor delivery person. I hate that even going to sit outside makes me so tired I want to cry. I hate losing hope that this isn?t all my life will ever be and that this is all Jims life will ever be. I hate that he is so unhappy now and I hate that right now I have nothing that helps me really. And instead of getting better this year it has actually been a downhill slide. The thing that gets me more than anything is that though I have been much worse I still am not even back to how I was when I first got sick. And that was awful, after 10 years I am worse! IS this ever ever going to go away. One thing my wonderful husband did say was Well you have lost 10 years but at least you have survived through this illness for awhile I wasn't sure. And That is true. But I want a life back, I want to feel better, I want to be able to do things, I want people to stop feeling like they have to manipulate me to get me to do things because they don't understand that the days I feel like doing things I do and can but the days I can't I can't.I hate that I can't be a help to my sister and Mom with my dad still so sick and I hate that I can't be there for him and go to see him more. I know I say this every year but I remember panicking because I was going to have to miss 2 weeks of school, when they told me that I got a virus on top of my bronchitis. Little did I know I would not be going back to school. And to top it off, my Doctor, the one who knew me and was so understanding and was my base is leaving. He has been my Primary care doctor for 9 years. He saw me through the worst when I was 84 lbs, through finally getting a diagnosis and through these years after. And now I have to start over with a new doctor and I am really scared about that. I have an appointment to see the traitor on Nov 8th and I am hoping he will be able to recommend someone and I am going to give him a piece of my mind how dare he leave. LOL. But god to have to explain all this to someone new. and then I mean most of the time when I ask Dr. G for pain meds he gives them to me a little stingily sometimes but always when I ask him when I see him. And the injections are sometimes the only thing that can get me through a headache and I know from experience that 1 of the other doctors in the practice will not give them to me and what am I going to do??????????? Jim says we may have to try a pain doctor again but then you have to try all these new things and I never understand is if I have found something that works and I don?t abuse it. Why I can?t I have that? Ok sorry did not mean to go off on that too.

If I had the energy I probably throw a pillow or something but I don't even feel like doing that!

Sorry for the long post but I needed to tell someone who I knew would understand.

So if you have any spare hope or strength can you send it my way, I really need it today.

Stacey

Dont get the rash, but when I am on Midodrine, my head itches all of the time, Doc said it was side affect and will go away. Maybe, if they ever decide to keep me on it or off of it. Vanessa

Ever since I first became ill I will get an itchy rash at the center, top of my back where the neck joins. I can usually tell when I am getting ready to crash because the rash and itchiness get worse than normal. I also get alternating pain and numbness on the top vertebrae at the top of the spine base of the neck. Does anyone else have this?

Oh yes, does not seem to matter if standing walking or sitting, I still get it. I have even had it laying, has woke me up at night. I have to take my b/p at least twice a day, and so I see what it is doing. I will even go from Brady to Tachy within just a few moments. So you are not swimming alone in this. Frustrating huh! body can't decide what it wants to do !

Vanessa

I can have mini episodes just sitting with chills and teeth chatters and tachy. My b/p is usually o.k., not to low or normal.

Anyone else or am I swimming alone?

P.S., whoever said this adrenaline stuff is "such a rush" should have it all the time..lol.