kellygirl

I have experienced pretty bad brain fog with my POTS. I used to devour a 200 page novel in 2 days and did extensive reading in my Bachelors program, now I can only read a few pages of a book at a time on a good day. Computers are a huge problem for me. I cannot be online for more than 15 or 20 minutes at a time without getting severely agitated and confused and dazed. I usually can't make it through a full TV program anymore either. I can't seem to stay focused, my eyes get really tired and my heart rate spikes if I am on computer too long. It has been hard to adjust to. But I do things as I can. Just can't seem to settle my mind in any one place. Things seem jumpy. I have also become pretty forgetful.

I use resistance balls and bands for strength training. They work great for me.

My body feels heavy at times, but it is only when my bp is low.

I only showed heart rate increase too. I started at 60 while lying and got up to 133 15 minutes into standing. I opted out of taking nitro because I have never experienced syncope and was worried about the effects. I did experience lightheadedness and floaters after 35 minutes of standing due to the consistant elevation in heart rate.

My heart rate is highest in the morning, immediately after waking and my blood pressure is low. As the day goes on my heart rate and blood pressure stabilize as later in the evening approaches heart rate slightly rises and blood pressure drops.

standing still is what brings on my symptoms. Can't stand in lines at stores anymore. I usually start to feel dizzy and weak and like I can't breathe. I do good with fast movement, but I do have to sit down to do my hair and put makeup on. etc

Gitte and KitKat, I can so identify with what both of you are going through. It has gotten to the point to where I am not even bringing things up to my cardiologist, EP or PCP anymore. I too am developing more and more symptoms (most recently urinary incontinence post exercise and decreased pain threshold only on some days). I have an appointment with EP on Oct 26 and plan on telling them that I do not wish to keep coming back every month and wasting my money for them to tell me everything is fine. When I had my TTT done I started feeling dizzy and was seeing floaters... when I stated my symptoms, the cardiologist said, "Your heart rate is good, it is 153 and your bp is good, it is 90/48". I wanted to ask her what was "good" about a heart rate of 153! My new PCP zeroed in on my bipolar diagnosis and has written everything off as my being psychiatric. It is horrible when we know we are ill, and we are struggling, and wanting to feel better and really just wanting validation for our symptoms and suffering and most docs are just so callous. Going to the doctors just upsets me more and puts undo stress on my system, so I am done with them. If I collapse... there is 911 and the ER. I hope you can find a doctor that will listen and address your issues. I totally understand your frustration though.

Hello. I am sorry you are struggling so hard right now. The year prior to being diagnosed with autonomic dysfunction I felt like something was horribly wrong with me... in fact I did feel like I was dying. I remember last Christmas putting the topper on the tree and wondering if it was going to be my last Christmas as I took stock of my physical symptoms in my head. I used to get a feeling that I was going to EXPIRE right on the spot. I had voiced my concerns to my medical doctor (I just was being plagued with symptoms of feeling like my breathing patterns was altered or different in some way,but I couldn't identify how), I felt like a dark curtain was being pulled over me and the lights were just going to go out. My medical doctor told me that it was anxiety and put me on meds for anxiety, but the feeling didn't go away. A year later I know why I was feeling that way... because my autonomic nervous system was not working correctly. As far as handling it. I have good days and bad days and I really try to enjoy the good days. If anything.. this is teaching me grab ahold of MOMENTS and cherish them! I still do get overwhelmed and depressed when symptoms flare, but I have a good support system which I think is essential to get through this.

Hi Grace, I am glad you have joined the forum and am so sorry to hear about your symptoms and diagnosis. It is encouraging to hear that you have found knowledgeable doctors. I can no longer tolerate meds as I used to. I was on seroquel for bipolar disorder and have had to go off of it because it just kills my heart. I was on baclofen for muscle spasms and pain in my back but can't take that either unless I want to be laid out for days. Seems about all I can tolerate is zofran, tylenol and ibuprofen these days... any thing else just feels toxic to my body. I hope you get to experience some better days. Next doctors visit I will be asking for medication for urge incontinence and hope it works.

Good info. Thanks for sharing. I quit drinking the sports drinks a month after diagnosis for dental reasons (the sugar contributing to dental caries). I drink water flavored with lemon or lime and take the buffered salt tabs. For low blood pressure that I need to restore quickly, I drink table salt in my water with lime.

I really feel for you. I just had the same thing happen to me a little less than a month ago, with not being able to get numb enough to get a root canal done with non-epi based anesthetic. I had the dentist cap it and am praying that I don't develop pain anytime soon. I don't feel comfortable with even getting propofol because my heart rate and blood pressure fluctuates too greatly throughout the day. Example of today, bp 90/46, 150, 148/82, 81, 101/64, 62. Yeah. like I would even venture for twilight or general... NOT UNLESS I AM DYING.... because I fear dying! And not over a tooth!

So tonight I decided to push myself a little harder and go for a brisk 3/4 mile walk despite my heart rate being 99 before I ventured out for the walk. While I was walking tonight my body just started secreting like crazy. My nose was pouring, my eyes were tearing massive amounts of fluid so bad that the tears burned my eyes, the sweat on my back was horrible and of different character, slick and sticky ( I even tasted it because my tears burned like they were salty, but there was no salty taste or any taste to the sweat at all). When I was done with my walk I took my heart rate and blood pressure as I usually do post walk. While the machine was reading my measurement, I just lost control of my bladder. I did not even feel like I had to urinate at all, it just came pouring out. My heart rate was only 120 post walk and I was well hydrated before venturing out. I had 5 liters of fluid in me with my usual amount of sodium. Has anyone else experienced incontinence with the dysautonomia? I remember the EP including that question in his assessment of me in the hospital but it wasn't a problem at that time. I do kegel exercises on a regular basis and am able to "hold" my urine or stop the flow midstream, so I don't understand how my bladder just let loose like that.

Hello, My adrenaline rushes only occur when I am lying down. They are marked by extreme physical restlessness, the need to move and extreme irritability, sometimes my body feels hot from the inside out.

I am able to briskly walk a mile most days, but it isn't helping with strength, especially leg and back strength, which I have none of, but when I try resistance ball or squats my heart palpitates too bad. Was thinking of recumbent bike but to embarassed to go to the gym.

Hello everyone, Thank you for the support. I tried to go out today, earlier this morning before it got hot, but my mood was horrible. I started menstrual bleeding (early) on the day I increased the synthroid dose, so those hormones in combination with the thyroid hormone have basically thrown me into feeling very very bad. It has been hard. Crying jags all morning, fits of rage, not feeling right in my body, my body itches, especially my scalp (it feels like it is suffocating). Just a weird sense of self... all perceptions are off. And the sweating!!!! Isn't the sweating supposed to stop when thyroid levels decrease!!! I mean ***! Any way my heart rate is back up to 91 just from sheer agitation.... I am happy my heart rate is up, just praying it is high enough for me to take a sleeping pill tonight when I go to bed because if I go another night not sleeping like I did last night, I fear my mouth may start running on the doctor. Seriously feel like I am coming unhinged. I HATE feeling this inner misery. All of my good coping skills are failing me and I just feel desperate today. All I can do is hunker down and pray! I hope everyone else who is having a tough time right now finds some moments of relief throughout the day. God Bless!

Well here goes... My doc readjusted my thyroid meds on wednesday. My TSH level was 16.5 so he increased my synthroid from 88mg to 125mg and my heart rate took a nose dive. This morning it was 65. Realistically, for a "normal" person a heart rate of 65 is good, but with us Potsies, and me in particular who normally runs is the 90s.... I am feeling awful. I am dizzy, short of breath, feel like my body weighs a ton, I am drooling, my eyes and nose just pouring with secretions. Today is one of those days where I tell myself... this is how it is... just go with it, but today is also one of those days where I am frustrated and ready to scream and cry, but God forbid I should EMOTE lest it throw my autonomic nervous system into a tailspin. Days like today I feel like I AM A WALKING AUTOIMMUNE DISEASE! I FEEL ALLERGIC TO MYSELF! I would gladly keep my heart rate in the 90s and 100s... my body has adapted to that, not to this. Sorry... I needed to vent with people who understand my frustration.

My doctors pulled me off ALL MEDS except for my thyroid medication, the day I was admitted to the hospital (I was taking atenolol for SVT, Seroquel for bipolar disorder, temazepem for insomnia and baclofen for back pain). It is 3 months later and I am still not allowed to resume my meds and am actually doing fine without them. In my case the docs are wanting to rule out any of my meds causing dysautonomia. So far my diagnosis is idiopathic but I have not had any autonomic testing done besides the TTT.

I have been undergoing dental procedures over the past month. My EP instructed my dentist to use nothing with EPI for numbing. The only thing I have noticed is an increased sensitivity to pain during procedures, not sure if it is from using non-epi based products which are longer lasting or if I have decreased pain tolerance due to dysautonomia (I will speaking with my EP on the 26th about this at my next appointment). For now I have root canal on hold because the dentist could not numb me enough to do the procedure. I always make sure to drink at least 2 liters of fluids before the procedure and the dentist keeps me as reclined as possible.

Hi, Sorry you are dealing with wacky vitals right now. I take temazepam 30mg on occasion for sleep. Temazepam is also in the same drug classification as ativan (benzodiazepine). Every single time I take it, my heart rate is jacked up through the roof 2 or 3 days after I take one, and my bp is all over the place, usually hypotensive with standing when I usually am not. I read and article which I am searching desperately to find that benzos actually contribute to wearing down the autonomic nervous system. When I find it, I will post it here. Give me a day or 2. I still take it even though my body reacts that way to dosing with it because once I get to a certain point, getting sleep is more important than dealing with wacky vitals.

Hi p8d, Getting through the rough times or bad days.... Things that have helped me making a gratitude list... I list 10 things I am grateful for and I think about those thingsuse self-guided imagery to visualize myself in a peaceful, calm and happy place... (drawing on an old memory of something I had fun doing, or imagining myself laying in the grass, looking up at big white fluffy clouds floating against the blue sky... putting myself in that place and feeling, smelling and seeing, and hearing the surroundings)prayingcalling my best friend on the phone and chattingchanging my perspective on my experience of "bad" days. Actually being ok and finding comfort in loading the couch or bed up with big fluffy pillows and blankets and hunkering down to watch TV, listen to music, or read, while hydrating and eating and allowing my body to restore itself during this period of time.allowing myself to cry and be ok with it.going to my 12 step meetings to have a fellowship and combat negative thoughts and gain support 6 days a week. If unable to drive someone from the fellowship picks me up. If homebound someone or a couple of people come by after the meeting or talk to me on the phone.On feeling useful Keeping my house cleantaking care of my dogsbaking for my neighbor when I bake for myselfbeing supportive of other members in my fellowshipoffering support and my experiences here on this forumand having faith that though not apparent to me yet, there is meaning in this whole experience, that my higher power has a purpose for me that he is preparing me for and that if I am patient that purpose will be revealed.also realizing that my sole purpose in this lifetime is to stay focused and engaged in the current moment and to turn the "fight" over to a power greater than myself. When I was first diagnosed, I was extremely depressed and focused on what had been taken from me because of this illness, and focused on the loss of function that I was experiencing, but now I try to stay focused on the positive ways POTS/dysautonomia has helped me to grow and change, both in lifestyle changes and in my spirituality. There are days where I still get down, get frustrated, get angry... but it ok, as long as I don't stay in that place.

also wanted to add, I guess I am lucky that I wound up moving where I did and went to the hospital that I went to, as it is a teaching hospital for a major university and the docs and residents are up on things like POTS and dysautonomia, they had me a diagnosis in under a week! And finally I was told by a doctor that I was not crazy. If I had been back home and this happened, I would still be in the dark!

Glad you are here. My symptoms are much worse with stress and anxiety. The endocrinologist told me that he had never seen anyone with such high cortisol levels as mine. My POTS came to the surface after making a major unwanted move out of my home town of 30 years and the multiple stressors I faced during the months following the move. We moved in the of Feb and by July my body gave out. The docs here did a very in depth medical history and ordered all records from all doctors ever seen in my home town going back to 1999 and found the dysautonomia had been in play for at least that long if not longer (possibly as far back as 1987 when I was sent for electromyleogram of the legs due to mottling and leg pain and cramps (nerve conduction was normal on the test), but I remember my legs being blue with mottling which is what sent me the doc in the first place. Had migraines since I was 6 years old. Severe exacerbation from the time I was 25 until I was 31. In the ER at least 3 times a week receiving demerol, benedryl, phenergan and IV fluids. Diagnosed Bipolar with Major depression and anxiety in 1993. I am also a RN, but unable to work due to the fatigue and brain fog. I would never dare to pass meds or do any nursing task with my lack of mental acquity, and most certainly would never make it through a 12 hour shift! I miss work though. Keep us posted on the florinef progress. Glad you are here!

YEY!!!!!!!

Hi Debbie Rose, Since this post I had a couple of days where my heart rate went up to 130, but I didn't exhibit any other symptoms other than accelerated heart rate. I just got labs back and everything was good except for my TSH, which was 17.5, I have been on increased dose for 16 days now. The first few days was when my heart rate accelerated. Of course I am still pacing myself and not overdoing it, not falling into anything that may trigger me off, like hot baths or showers, exposing myself for too long to environmental heat, not spending too much time on the computer, I am still eating well, doing my salt and my liquids and going to all my doctors appointments, and I am making sure to nap during the day and staying on a regular sleep wake cycle and definately avoiding anything stressful! I do need to start walking again, but it is still too hot here. When I am able I walk the mall in the air conditioning, but for now most of my exercise is in walking the dogs and cleaning the house. I cannot wait to get my thyroid within normal limits to see how I feel. It has been since July that we have been making med adjustments. At that time my TSH was 30. But thyroid dosage adjustment has to be slow. Only one adjustment per month so as not to mess things up worse. Mostly right now I am just bummed about running to docs for other medical concerns, but slowly I am getting it back down to the main docs being EP and PCP! YEY! thank you for asking, and please keep us posted on your progress with florinef!

I totally understand the all over the place vital signs. I really try not to pay much attention to the darn vital sign machine anymore. I was driving myself crazy with it. The only time I do check is if I feel like I am going to pass out, if I see floaters or if I hear my heart pounding in my ears. For me and because of the rapid fluctuations in BP and HR throughout the day... I just hydrate and do the salt like I am supposed to. To bring my heart rate down... the more fluids the better and the excess fluids do not seem to drive my BP higher. I am prescribed to do 4 liters of fluid and 4,000 mg of sodium a day now, but there have been days where I have done up to six or 7 liters when I have had medical procedures done. In my case it seems the more fluids the better, but we do have to be careful with that too. The best thing I did was to get a loop monitor put in so that I don't have to worry about the heart rate. If my heart rate falls below 40bpm or goes above 140 bpm I am alerted by my doctors office, and if I have a cardiac event all I have to do is push a button and place a small device on my chest and it will automatically transmit to doc... if it something that requires medical intervention I will be notified. It takes a lot of guess work out of things for me. Of course if I am feeling very symptomatic I proceed to the ER anyway. The loop recorder is good for 3 years and is very small and placed intradermally in the chest. Best thing that I ever did!