Are You 'used To' Pots And And??

[louloutinks]

This morning the alarm went off and as usual, as I went to turn it off, my heart started to get faster basically because I had to turn over in bed to reach it. We were late as I hadn't heard the alarm again so I done a silly thing and jumped out of bed to wake my son. Dizziness and tachy hit me so lent on the bed till it passed. Had to rush around and was breathless and getting dizzy but had to get my son to the paediatrician real soon. Went downstairs and made his breakfast. Came up the stairs and it was a struggle. Had a shower which gave me a headache. Put on some make up feeling trembly. HR by this time was over 150 even though I was sitting.Got breathless walking up the hill to my car and legs started to burn and ache. Sat in the car and breathe a sigh of relief. Got to the Childrens Centre and whilst in the lift, I had to sit down or fall down. Came home after dropping my son off as I need to eat and now I am laying here on my bed with headache and feeling worn out already but I have to go to work soon (luckily only for a couple of hours) and hope that I am not the only one in today as it killed me last week being by myself. I really feel like I just need to lay here for the next couple of hours but I can't - just hope they let me sit down at work today!

The question I am asking, or something I have come to notice, despite feeling like this all the time, I still get on with it all and wondered if you are all the same. Just working through the day and the dizziness, tachy, adrenaline surges, pains, feeling cold, headaches, shaking etc - looking nigh on as nothing is wrong to outsiders??

(Don't get me wrong, as there are days that I feel I just cannot cope with anything but I must as I am a Mum and my child doesn't look after himself)

[HopeSprings]

I'm so glad you posted this. Your mornings sound exactly mine, same symptoms, same struggle. What is it about sleep??? I wake up feeling as you described, heart pounding hard when I wake up, then fast when I get up, dizzy, exhausted but have to work through it because my children need me. During the week, it's all about getting functional enough to drive my son either to camp or school and then coming back and taking care of my (almost) 3 year old all day. Today I got back and felt the same way as you ... I just want to lay down and rest, but can't... there's story time at the library to go to. You deserve so much credit for working outside the home despite the way you feel. I fake it as best I can, to appear normal, to do everything I'm supposed to -like nothing's wrong. It's amazing to me that people can't tell something is wrong with me. Are you on any medication? I haven't found anything to help yet.

[autumn]

The question I am asking, or something I have come to notice, despite feeling like this all the time, I still get on with it all and wondered if you are all the same. Just working through the day and the dizziness, tachy, adrenaline surges, pains, feeling cold, headaches, shaking etc - looking nigh on as nothing is wrong to outsiders??

YES! I'm glad you posted this, and I'm glad others do this, too. I just push through because I have to -- I don't have kids yet, but I have a job I love and don't want to lose, and I have other responsibilities that no one else is going to handle if I don't. For example, my mom is disabled, and I make the six-hour round trip every couple of weeks to see her (not just because she's disabled; I enjoy spending time with her!). When I'm there, I'm usually running a bunch of errands for her and doing the heavy lifting -- groceries, laundry, etc. The other day, I had to carry many, many pounds of stuff from the car to the basement for her. That's a job I would have farmed out to my boyfriend if he were around, but it was just me, and Mom wasn't going to be able to do it.

Honestly, it makes me feel good after those marathon days are all over, knowing I can push through high heart rates, shakes, lightheadedness, vision losses, BP swings, etc. It just means that I'm still the one who calls the shots, not POTS. In the end, it's good for me.

[louloutinks]

Hi Naomi, sorry to hear you feel the same -mornings are usually always the worst! Back home now with son and his friend on board - they are playing together so I can chillax a bit until meal time. I am on no meds just told me to drink more and have more salt, but if there was no improvement to go back for meds. Thing is I have noticed, is that when I first noticed my HR upped on standing it was going up by 30/35 but as time has gone on it is getting faster and faster, now raising more than 50/70bpm extra usually. Am back to see a specialist soon (not my EDS one) and will discuss it with them then. I am going to request a TTT as I was only dx'd by taking my HR on occasions and by the symptoms (even though the DX was by a Professor, I still want REAL confirmation with TTT) but now I feel it is progressing, I want to know what type of POTS this actually is as my HR and BP are really ALL over the place.Am worried about salt intake too as since I was put on it I have had blood tests and my kidney function is not the best either.

Do you have meds Naomi?? What meds do you get for this thing and the side effects if known - I did read that because of the autodys the body reacts bad and that they give more meds to counteract that too. Keep on ploughing on Naomi!!!

[louloutinks]

Hi Autumn - sorry I missed your post earlier as I was replying to Naomi!

What does your Mum say about your POTS - do your family understand or not take any notice because you DO get on with things. Even when I am with my family, and I get tachy and dizzy, I tend not to say anything and do not understand why I don't to be honest - think we are so used to it that we just accept as part of our everyday routine. When I feel bad, I do not speak to my family on the phone as I am feeling too bad so they don't know about it as I dont really speak about it.

Once my mum seen me really bad was when she turned up and it was a really bad day for me. My HR was really bad and she was very surprised and worried.

When you say vision losses can you explain what you get please? I have noticed that I get black spots in vision (not floaters) that I thought was start of a migraine (but I usually get bright colours with that),can be very light sensitive and can find it hard to read as the lines seem to jump all over the place or things get a bit blurry. I didn't know you could get vision problems with this and put it down to thoracic outlet!

[Birdlady]

Yep I just push through it everyday. I don't let anyone see me on bad days and I never talk about it to my friends or family. There is no reason to discuss it with them as they would get bored and I don't want to think about it any more than I have to. Time with friends is to be enjoyed, not sitting there dissecting a chronic health issue that has no easy solution. It's not like my friends are going to be able to relate to it or give me advice. Overall, I hate talking about my health and avoid it at all costs. "How are you doing". I'm doing all right. That's what I always say. Even if my HR is 150 and I'm dying.

Thank goodness I don't have kids. POTS is the reason why I haven't started a family. I just can't do it.

[autumn]

No worries.

My diagnosis isn't even a year old, but the symptoms have been around forever -- and when your doctors keep telling you that what you're experiencing is normal, you feel additional pressure to just get through it because you think everyone else must be like this, too. There have been a few times in recent years that I've been visiting my mom and had episodes, but unless they're really, really bad -- as in rendering me fairly nonfunctional -- I just "ignore" them. Mom says she knows it's not all in my head, but I feel like I can't really say when I'm feeling bad because she needs things done and can't do them, so sick or not, I have to handle things. There was one time she kept asking me to bend and get stuff -- as in, she wouldn't ask me to do it all at once, she'd think of something else and have me bend down again a second or two later -- and I had to ask her to stop having me go up and down. It makes me lightheaded and causes vision blackouts.

As far as my vision, I have a lot of visual disturbances, including black spots, bright spots, shadowy things, bubble-type things, snow, etc. When I lose my vision, though, it's usually a blood pressure thing; when I stand up too quickly (or not even too quickly sometimes) from sitting, lying or even bending/kneeling down, my vision goes black until my blood pressure can rise to accommodate the positional change. My pediatrician back in the day couldn't give me an answer, but my eye doctor told me that it's orthostatic hypotension and to sit down when it happens because it could be a precursor to fainting. Interesting that my eye doctor was the first one to notice that something wasn't right with that whole system!

I've also lost my vision while standing during a symptomatic episode, such as in a too-hot shower. I lose it during exceptionally bad ventricular tachycardia episodes, too. Sometimes it really hurts my head, neck and shoulders/upper back as it tries to come back -- I'm guessing that's a blood-flow thing.

[bensman]

Tinks ~

Absolutely. I force myself to keep on keepin' on. I still have trouble accepting this illness and envision myself healthy again someday. The most frustrating thing to me is the roller coaster ride. My "good" days give me hope, but also frustrate me because I know they are possible and I want them every day.

I have some wonderful and very supportive family and friends, but they don't really "get it." I sometimes wish they could live in my body for just one day to understand what I go through.

Hugs,

Kate

[louloutinks]

Me too Volley - thing is on the good days I do way to much and that doesn't help matters none. I went though a spate, where all I coud do was to wake up, get my son on the bus for school and then I would sleep...for hours! Then I would once again feel awful later and want to go to bed by 8/9pm. I do really struggle with sleep patterns with my son as he has autism and most nights he doesn't sleep till midnight and some nights as late as 3am. That has really taken it's toll on me too. Tomorrow night is his melatonin night so maybe I may get a good sleep then - just hope I feel ok to sleep!

[HopeSprings]

No meds here, Tinks. Everything I have tried has made things worse. I really want to know what is underlying this so I can get the right medicine.

[bensman]

Naomi ~

I couldn't agree with you more! The right treatment is so dependent on the CORRECT UNDERLYING ISSUE! I am certain POTS is secondary for me, but getting to the core issue is a long, tedious process. I keep marking things off of the list though. Maybe one day I (and everyone else suffering) can put a check mark by one.

Kate

[HopeSprings]

"I keep marking things off of the list though. Maybe one day I (and everyone else suffering) can put a check mark by one."

Yes, exactly! Well said, and I hope so too.

[Libby]

I've had POTS for so long that I just grew up thinking most of my symptoms were relatively normal. And even the ones I kind of knew weren't, I have this weird fear about being seen as weak/sick, so I rarely mentioned them.

I can ignore and push through pretty much all my symptoms. I'll walk down stairs in the morning while my vision's still blacked out from getting out of bed. I know that I can, so why should I let it put my life on hold even for 30 seconds?

And, anyway, people just can't seem to reconcile that I have POTS with the fact that I look healthy, so I try to avoid making them. Easier for everyone, I think.

[GingerA]

Your morning sounds very familiar. I have three boys that need me so I try to push through as well. Be careful not to push yourself too hard however because that is exactly what I did when I was working and my entire system crashed. I finally had to quit work after I past out at work a few times and stayed so tired I couldn't stand up. Now I am battling everyday to regain my strength. I know that I will get there but I can not afford to crash again.

[louloutinks]

GInger, I do think things are getting worse this end (tachy and BP wise). I woke up a tad late today, went downstairs for a drink, came back upstairs and HAD to sit down for a bit.

I have Ehlers danlos as the cause for my POTS and I read somewhere , that because it is not idiopathic it will never go, is this true?

Day off for me today and have to take the cat to the vets - the hoovering needs doing amongst other things but heck tomorrow is another day - I am taking it easy!

I remember it got to a point with me a couple of years or so ago, that when my child came home from school, I had to suggest games like boardgames, cards, puzzles - things I could sit down to do with him - that's when I knew something was definitely wrong and went to the doctors. Gym, volleyball and bike riding are such a thing of the past, I am now usually a spectator of my child running around whereas it was always me joining in! Sad really

[iheartcats]

This thread makes me think of how crappy I feel and have to push through everyday.

It's hard to stay chipper and people wonder why you get snippy.

[louloutinks]

Hi Cat lady - sorry to make you remember how crappy you feel

I was just thinking yesterday whilst feeling crappy, how I manage sometimes, as my mum rang the other day and said she came over all dizzy, trembly, heart rate real high, red faced, dilated pupils, and she had to sit down on her path in her garden - she said she felt awful for a while after too and not 'quite right' so she had to go indoors and relax for the rest of the day. It sounded so similar to POTS symptoms and she too has EDS, so I hope it isn't.

But it got me a thinking that I am like this ,most of the time on a daily basis and wondered if others felt the same or I just couldn't be that bad if I can manage to do what I do sometimes, if you see what I mean.

How do we manage to get through it really, with all that is going on inside us all??

[GingerA]

Tinks,

Everything that I have heard about POTS says that there is no cure. However my doc keeps telling me that I can build up my strength and learn to function as long as I keep everything in balance and not over exert myself. I don't know much about EDS so I can't really help you out there. But I understand about playing with the kids. I watched Father of the Bride the other night and cried because I wanted to play basketball with my kids like Steve Martin did.

[louloutinks]

Hi Ginger...it certainly has changed a few things here in that respect! I know some people with pots do get rid of it i.e teenagers etc and also if the cause is dealt with then the pots should go (not gospel but have read this all somewhere) so true or not I am not sure???

[comet555]

I would definitely say I'm used to POTS. I was just diagnosed last month although the cardiologist said based on my history I've liked been this way since I was about 16 (so only about 15 years or so!). My case would be more on the mild side as I can still function fairly normal even if I do feel like crap. I have fainted a couple of times over the last 15 years but it is still pretty rare for me, although I do get lots of pre-syncope episodes.

I gave up trying to figure out what was wrong with me about 10 years ago. The doctors just kept telling me I was fine and after they checked out my heart (ECG & Echo) I started to believe them. I always felt that how I felt was not normal but when they can't find anything wrong with you it's easy to just push those thoughts to the back of your mind. In some ways it's probably been a good thing that I hadn't known when I was younger as I just pushed through it and kept trying to do everything I always did. I kept playing hockey (ice hockey) and managed to play competitively too despite the fact that I always felt as though I were dying and had zero energy while I played. I love to play but every time I went out on the ice it felt as though it was a tremendous effort. To everyone else I looked fine although they thought my fitness levels were terrible (now I know why!). I can remember crying sometimes on my way home from hockey because it was so hard that I wanted to quit. But then I would tell myself that I was being silly thinking exercise was harder for me somehow so I just stuck with it and kept playing even though it felt awful.

Day to day life has been about the same too. I never really mentioned much of this to my husband because I didn't have anything to explain why I felt so crappy. I knew that eventually everyone would get sick of listening to me when the doctors told me I was fine. So I learned to continue doing things when I was tired or my heart was going crazy because as the doctors said "there was nothing wrong with me." I learned when a wave of dizziness would pass, or when it was so bad that I needed to either sit down or faint. Most of the time no one would have known, and so my every day life seemed to be normal at least to everyone else.

Anyway, just had to add all that! I was relieved to find this forum and had to answer this topic because the original poster just summed up how I felt.

[Allene]

Unfortunately, I'm unable to "ignore" my symptoms, as the majority of my problems are fainting/feeling faint. Extreme fatigue is a large part of it as well, but I usually push through that (if I'm not asleep. I sleep so much now :/). It's the feeling like I'm about to pass out that I can't ignore. I spent most of yesterday sitting down every few moments because I thought I was going to faint. When I have a near-fainting episode, I usually am even more exhausted than usual for the rest of the day (though, I get pre-syncope nearly every day, so "usual" isn't the right word...) My symptoms have been progressing instead of coming on and halting at a certain level. I think I could perhaps adjust if I was stable, but I just keep getting worse, so the changes I make one week aren't helpful a few weeks later. It actually concerns me a little, because I've been slowly getting worse over the last 3-4 years. I've heard of things like MSA and I worry that I have something like that.

[brethor9]

I too was able to push through this illness for almost 4 years; worked 50 hrs week at a very high stress cancer clinic, care for my autistic son and worked out every night for 2 hrs....that was until complete system failure in February. I actually ended up in the hospital several times due to the symptoms becoming so severe and had to leave my job. I was finally diagnosed end of May and started treatment in June. Even with treatment I am still having difficulty stabalizing my symptoms enought to return to work in any capacity.

I agree we should not give in to this illness but I am also an example that sometimes as much as you want to push through your body has other plans...I realize now that I pushed it way too hard, didnt pay enough attention to the signs that my body wasnt compensating well and now I'm paying for it big time. Pushing through isnt an an option for me anymore it just makes my symptoms worse...now I have to work on repairing the damage if thats even possible.

Bren

[louloutinks]

Hi Bren,real sorry to hear that your system crashed and I hope you can get help to try get yourself well and better. Have you got pure autonomic failure or pots or something else??

I have an autistic child too whom has trouble sleeping (2.45am the other night) which takes its toll on me so much as it adds more exhaustion to my situation.

I have noticed that my morning BP(esp) is now getting really high as of late and I have had the shakes and dizziness with nausea today - bad day for me. I have a referral to the London Neuro Hosp soon so am hoping it can all be looked at before it gets worse as it does not seem to be settling at all. 2 years ago I only had fast heart rate on standing, then gradually the dizziness set in with low BP and now other things are happening on top too. My specialist told me to 'learn to live within this condition' when I told him how I push myself.

[brethor9]

Hi Tinks

I was diagnosed with Orthostatic Intolerance/ Postural Orthostatic Tachycardia Syndrome/ Hypovolemia/ Beta adregernic hypersensitivity/ elevated norepinephrine lying down and any change in position. I also suffer from migraines,nerve issues in my neck and spine which cause chronic back pain, irritable bowel syndrome, severe allergies, and the list goes on.

I sometimes wonder if after so many years of just putting more and more stress on my system didnt just cause a complete malfunction. Even the birth of my son was difficult (ended up as general anasthetic c-section)hysterctomy in 2008, gallbladder in Jan 2010...so maybe in the end it was just too much and my body made the decision to slow things down for me. Honestly, if it hadn't of I would have just kept pushing and pushing it so maybe down the line its a blessing in disguise??

Yes Tinks, I can definately relate to how exhausting it is taking care of an autistic child. My son also has sleep issues and when he wakes me in the middle of the night..the chaos in my body is horrible...massive adrenaline surges. I also have a husband with ADD so I really have my work cut out for me lol. How old is your child? are they high functioning autistic or aspergers?? If you dont mind me asking lol...

[louloutinks]

Hi Bren, that is a lot to deal with there. Before this started I was pretty healthy (apart from pains from EDS) but since this has started I have got lots of other things along with it too. Arm numbness/pain, neck pain and migraines etc which docs said was thoracic outlet syndrome (mri was clear), kidney function issues, rashes, hives,and all the potsy stuff. Such a pain - I had to drag myself out in the car today to take my son out for some fun. It ended up in disaster as he had a complete meltdown and I was feeling real bad myself and found it hard to deal with.

Are you in USA and attending a good clinic for your health issues? Hope they can help you Bren as it changes so many things in our lives.

Wow, so you have 'double trouble' at home with your son and husband, lol My son was dx'd with HFA. I thought this was the same as aspergers but the Professor said that he was more classically autistic without the IQ difficulties. A year after they tested his adaptive behaviours and they were in the mentally retarded range (I hate that saying) so despite having a normal IQ in abstract tests he has absolutely no life skills. He struggles hugely socially which is really hard as his mum to see, and it breaks my heart (and stresses me out lol). Is your son HFA, ASP or Class, and has he improved with age - how old is he by the way? I hope you don't mind me asking either