New symptom - waking up with very high HR?

[peachychou123]

Hi all, sorry if this is long. I'm in my twenties and was diagnosed with POTS 6 years ago. I've been on propranolol for 4 years which helped my symptoms about 90%. However, I started to wean myself off and have not taken it in 6 months. I haven't received much help or support or even meds from doctors. I've mostly been managing my condition myself.

I've always had a number of weird/scary symptoms which have, over time, become 'normal' for me.

However I'm a little worried about this new development. Just over a week ago I started feeling much dizzier than usual. I went to the doctor who said I had a UTI. I started shaking uncontrollably at night but no fever. These were chills or rigor (the dr said it was my body trying to fight off an infection) and I was prescribed bactrim. The UTI cleared up (still a few leukocytes in my urine) but I'm still getting chills where my teeth chatter and I shiver uncontrollably for about an hour.  No fever though. I noticed that after I use the toilet, the shivers stop. So now I'm wondering if it's a vasovagal reaction.

Then 3 days ago, I noticed my heart was racing everytime I turned over in bed. I ignored it and went back to sleep. But in the morning woke up and my heart was pounding out of my chest, the fastest I've ever felt it at rest. Tachycardia is normal for me when standing or doing anything, and averages about 90 lying down/120bpm just standing. However my HR was about 130 just lying down! This is very unusual for me. As soon as I rose out of bed, my heartrate jumped to well over 150 (I think it was more 180) I felt like I was going to collapse. I asked my mother to call an ambulance. The ambulance took 15 minutes to get here, and by that time, the tachycardia had just suddenly gone, and I was back down to 90bpm. I was taken to hospital, they did an EKG and some bloods to check for infection, everything thankfully came back fine. I always believed I had low BP, but my blood pressure was actually pretty high. 145/99.  Combined with the racing heart. The doctor said it was a panic attack, but gave me some more antibiotics 'just in case'. This is strange because I was feeling very calm at the time until I felt like I was about to faint. They gave me some saline and sent me on my way.

Yesterday was fine, but this morning, the exact same thing happened. I woke out of a scary dream which caused an adrenaline surge, and my heart seemed to have been racing for a while. It was very high again. I sat down, drank some water, and after about 15 minutes the tachy went as soon as it came.

The fact my EKG came back normal is quite reassuring for me. But at the same time, it was taken when I was back to normal, so I still don't know whether these episodes were Sinus Tachy or something else. I've had an echo a few years ago which was normal. I am trying to put these new symptoms down to just weird POTSy stuff. But I have to admit I'm scared as this is NOT normal for me. I told the doctor I had been having some leg pain and so was concerned about a clot or PE. But she didn't want to do a d-dimer because I wasn't particularly breathless and didn't have chest pain. I'm still a little anxious about that possibility. But the ER doctor was skeptical.

I'm really curious as to what is causing this recent scary morning tachy. I know when we are ill, our POTS symptoms usually increase. But I haven't had any fever or viral illness, just a mild UTI. Could it be the bactrim which I finished a week ago? A simple adrenalin surge? My body acting more POTsy because it's still trying to fight off this UTI (even though they checked my kidneys/white blood cells and it came back normal)? Maybe this happened before but I never realised because I was on propranolol for years which may have masked it? The only trigger I can think of is having a heavy/salty meal in the evening before these morning episodes. I did wake up a little thirsty and feeling dehydrated. I'm going back to my GP and asking for a hormone workup to check for thyroid or adrenal gland tumour. But these episodes are really scaring me. Does anyone else experience a much higher HR than their own personal 'normal' in the morning? And did you notice it came out of the blue one day? I just find it strange these tachy eps started after the UTI + antibiotics. I've been reading up on fluoroquinolones, and a lot of POTS sufferers are warned not to take them, as apparently they can have dangerous effects on heart rhythms since they permeate the CNS, which is already delicate for us POTS sufferers. I feel totally wiped and exhausted after these episodes. I want to take propranolol again to stop these weird adrenaline surges and tachy, but the ER doctor said not to go back on the propranolol until after the shivering episodes stop. But I'm getting very worried.

 

[StayAtHomeMom]

I would go to your regular PCP and talk them about getting back on propranolol or do further testing. Just because we have POTS doesn't mean we don't have something else that can suddenly crop up. I hope you feel better soon. 

[Pippie]

I go in patterns with the sinus tachycardia. Mine also happen first thing in morning. Going up to 150bpm just STanding to brush teach. I went thru a bad episode a couple of weeks ago where it lasted one whole week, happing each morning. Now it’s gone away (for the time being). I do feel for me there is a huge link with my GI System. I too am feeling week, legs have been hurting and low back pain too. 

You may want to push for a 21 or 30 day haltor monitor. This will track your episodes and give you peace of mind. I had a 21 day monitor placed on me and I did have heart palps that were recorded, but they came back as normal sinus tachycardia 

[peachychou123]

1 hour ago, Pippie said:

I go in patterns with the sinus tachycardia. Mine also happen first thing in morning. Going up to 150bpm just STanding to brush teach. I went thru a bad episode a couple of weeks ago where it lasted one whole week, happing each morning. Now it’s gone away (for the time being). I do feel for me there is a huge link with my GI System. I too am feeling week, legs have been hurting and low back pain too. 

You may want to push for a 21 or 30 day haltor monitor. This will track your episodes and give you peace of mind. I had a 21 day monitor placed on me and I did have heart palps that were recorded, but they came back as normal sinus tachycardia 

Hi Pippie, was this sinus tach always part of your dysautonomia or did it come earlier/later than your dysautonomia diagnosis? Do you get these funny tach episodes just in the morning or throughout the day? Were you particularly stressed or run down, could it have been brought on by a hyper pots phase? My resting HR seems like my usual mild pots tach throughout the day. These recent more debilitating episodes only seem to happen on waking.

The only positive thing is my heart rate felt regular while going this fast. So I'm hoping it's not any kind of more dangerous arrhythmia. I was feeling better on propranolol (probably because it tackled my adrenaline rushes, tachycardia AND highish bp) for the past few years and right now there's a box in my cabinet which I'm itching to reach for! I definitely agree there's a strong GI/vasovagal link. I have bad reflux and if my esophagus is irritated I get more skipped beats. My cardiologist scoffed at this theory but all I need to do is eat something spicy and the skipped beats appear! Same with these chills. The doctor blamed them on the UTI but I noticed my stomach gets upset right before the chills. And once my stomach feels less crampy and sick they go. Vasovagal? Maybe.

I have been under a lot of emotional stress lately and have been generally feeling quite run down. Not ill in a viral way, just very crap and tired and anxious. I have a few long term symptoms that took me a long time to accept. Everytime a new symptom comes along, it brings back the anxiety that came before my official diagnosis, because I wonder if it's going to be long term. Sometimes I wonder is it my usual weird pots or something else? I think I need to go back to a cardiologist, neurologist, and sort my anxiety out! But knowing your episodes are on and off and not constant gives me a little bit of hope. Hope you're doing well.

[voxel]

What you described is what I experienced 4+ weeks ago. I'd eat something salty at night, be ever slightly dehydrated, I'd wake up with some random HR spike (maybe even sweating) with an elevated blood pressure above 140/90 (I'm usually 108/73 or so) and then when I would stand my HR would race to 150-170bpm. If I drank 1-2 full glasses of water I could lower my BP to 125/85 and my HR down to 110 or lower. I'd measure my BP/HR before and 10mins after drinking water.

This was also when I had leg vein pain and I had to sleep with elevated feet...  When that sort of half-healed itself (I no longer have to sleep with feet up) my HR didn't race overnight. I also stopped eating anything too salty before going to bed.

[peachychou123]

35 minutes ago, voxel said:

What you described is what I experienced 4+ weeks ago. I'd eat something salty at night, be ever slightly dehydrated, I'd wake up with some random HR spike (maybe even sweating) with an elevated blood pressure above 140/90 (I'm usually 108/73 or so) and then when I would stand my HR would race to 150-170bpm. If I drank 1-2 full glasses of water I could lower my BP to 125/85 and my HR down to 110 or lower. I'd measure my BP/HR before and 10mins after drinking water.

This was also when I had leg vein pain and I had to sleep with elevated feet...  When that sort of half-healed itself (I no longer have to sleep with feet up) my HR didn't race overnight. I also stopped eating anything too salty before going to bed.

Wow, that does sound scary and incredibly similar to what I'm going through right now. It's great you found a way around it because these eps are exhausting. Were you going through any kind of flare-up or stress at the time aside from the vein pains? 

I'm hoping this is just a pots flare-up. I'm going to stop eating anything salty after noon and anything in general after 7pm and see if that makes a difference. The night before this happened I'd been eating Chinese food with a friend so tons of MSG which is not good for me in the first place! 😕

My first instinct was also dehydration, given the bp reading & the salt content of my meals on both evenings, but I just remembered on the morning I called the ambulance, the tachy resolved without drinking anything, because I was too scared/unsteady to manage to get myself water. I just sat up and tried to breathe deeply/bear down a little bit. If it were simple dehydration/hypovolemia it probably would have continued until I rehydrated. Hmm. It's bugging me. It's been 6 years since I had a holter monitor so I'm not sure what's going on during sleep (and am a little scared to know frankly) but...I noticed the morning after I got the saline drip at the ER, I didn't wake up with the tachycardia. Maybe it really is to do with dehydration/blood volume. And maybe just my general anxiety levels which at the moment are sky high. I'm always worried it's something more, but I'm trying to stay positive. 

[StayAtHomeMom]

4 minutes ago, peachychou123 said:

Wow, that does sound incredibly similar to what I'm going through right now. Were you going through any kind of flare-up or stress at the time aside from the vein pains? 

I'm hoping this is just a pots flare-up. I'm going to stop eating anything salty after noon and anything in general after 7pm and see if that makes a difference. The night before I'd been eating  Chinese food with a friend so tons of salt and MSG 😕

And I'll be drinking more water (although I drink a lot already). My first instinct was also dehydration, but I just remembered on the morning I called the ambulance, the tachy resolved without drinking anything, because I was too scared/unsteady to manage to get myself water. I just sat up and tried to breathe deeply/bear down a little bit. So it's bugging me. I don't have a monitor so I'm not sure what's going on during sleep (and am a little scared to know frankly) but I noticed the morning after I got the saline drip at the ER, I didn't wake up with the tachycardia. And maybe just my general anxiety levels at the moment. I'm always worried it's something more, but I'm trying to stay positive. 

Try getting a fitness wearable. Like a fitbit or Garmin (I prefer Garmin they are waterproof). Get the one that does HR monitoring. It isnt perfect as it only checks ever 2 minutes but maybe you can have some raw data for at night. 

I bought mine shortly after my diagnosis and it helps when I don't feel good or if I am doing something I can do a quick check and reassure myself I am fine. Or tell myself to go lay down

[voxel]

9 minutes ago, peachychou123 said:

Wow, that does sound incredibly similar to what I'm going through right now. Were you going through any kind of flare-up or stress at the time aside from the vein pains? 

I'm hoping this is just a pots flare-up. I'm going to stop eating anything salty after noon and anything in general after 7pm and see if that makes a difference. The night before I'd been eating  Chinese food with a friend so tons of salt and MSG 😕

And I'll be drinking more water (although I drink a lot already). My first instinct was also dehydration, but I just remembered on the morning I called the ambulance, the tachy resolved without drinking anything, because I was too scared/unsteady to manage to get myself water. I just sat up and tried to breathe deeply/bear down a little bit. So it's bugging me. I don't have a monitor so I'm not sure what's going on during sleep (and am a little scared to know frankly) but I noticed the morning after I got the saline drip at the ER, I didn't wake up with the tachycardia. And maybe just my general anxiety levels at the moment. I'm always worried it's something more, but I'm trying to stay positive. 

Well the past 8 weeks have been the first time I've experienced consistent sinus tachycardia (and dysautonomia like symptoms) before that I had these HR spikes once every 6-8 months which only started two years ago. I was stress out about not knowing why I was experiencing tachycardia and I went to ER four times in three weeks. The worst HR spikes happened when I started experiencing leg vein pain.... before that all the tachycardia events were once, twice, three (max) a day. With leg vein pain I could experience tachycardia every time I stood up with an elevated BP... basically like 10-12 times a day.

My FitBit caught the tachycardia events when I slept. I'd wake up feeling gross and slightly sweaty and wondered why. Thankfully I have no experienced any such events in the last 3 weeks as I control my blood pressure and electrolytes carefully (I make sure I keep my salt, potassium, calcium, magnesium balance).

Also drinking water is NOT always good. You will urinate out potassium and other electrolytes.

[peachychou123]

7 minutes ago, StayAtHomeMom said:

Try getting a fitness wearable. Like a fitbit or Garmin (I prefer Garmin they are waterproof). Get the one that does HR monitoring. It isnt perfect as it only checks ever 2 minutes but maybe you can have some raw data for at night. 

I bought mine shortly after my diagnosis and it helps when I don't feel good or if I am doing something I can do a quick check and reassure myself I am fine. Or tell myself to go lay down

Thank you! I will definitely check them out. 

[peachychou123]

36 minutes ago, voxel said:

Well the past 8 weeks have been the first time I've experienced consistent sinus tachycardia (and dysautonomia like symptoms) before that I had these HR spikes once every 6-8 months which only started two years ago. I was stress out about not knowing why I was experiencing tachycardia and I went to ER four times in three weeks. The worst HR spikes happened when I started experiencing leg vein pain.... before that all the tachycardia events were once, twice, three (max) a day. With leg vein pain I could experience tachycardia every time I stood up with an elevated BP... basically like 10-12 times a day.

My FitBit caught the tachycardia events when I slept. I'd wake up feeling gross and slightly sweaty and wondered why. Thankfully I have no experienced any such events in the last 3 weeks as I control my blood pressure and electrolytes carefully (I make sure I keep my salt, potassium, calcium, magnesium balance).

Also drinking water is NOT always good. You will urinate out potassium and other electrolytes.

I'm sure you know this but it sounds like your blood was pooling a lot, especially if elevating your legs helped with the pain and then the tachy. Like most pots people my blood pools in my legs a lot and my feet go purple, if it's really hot my HR goes up more, and sometimes my calves ache, but a few hours laying down usually seems to resolve it. So I'm surprised my body is acting like I've been standing too long when actually I've been laying down for 8 hours. It's...strange. And the fact it's happening first thing after waking does *kinda* sound like an adrenaline thing. I don't know what to think right now. I think I vaguely remember a slight HR increase each morning when I was first diagnosed, but I don't ever remember my resting HR feeling this fast or unsettling. 

[voxel]

8 minutes ago, peachychou123 said:

I'm sure you know this but it sounds like your blood was pooling a lot, especially if elevating your legs helped with the pain and then the tachy. Like most pots people my blood pools in my legs a lot and my feet go purple, if it's really hot my HR goes up more, and sometimes my calves ache, but a few hours laying down usually seems to resolve it. So I'm surprised my body is acting like I've been standing too long when actually I've been laying down for 8 hours. It's...strange. And the fact it's happening first thing after waking does *kinda* sound like an adrenaline thing. I don't know what to think right now.

My legs/feet didn't go purple... they were cold and sweaty. And my calves ached. I now know cold feet is a sign of low salt for me. I'm sure everybody is different. Also when I have low salt my BP drops below 100/65 (and will fall lower if I am dehydrated) so I know I should have something salty like a pickle or chips.

When I started bumping up my salt... the calve pain lessened. In fact when my calves ache now it is a sign of electrolyte imbalance. Cramping - low potassium. Veins feel tight... low salt (low blood volume).

Officially I don't have POTS according to my cardiologist because my HR spikes upon standing ONLY when I have a high BP. And I have HR spikes when sitting or laying down, but infrequently (i.e once every 4 weeks).

I'm having a vein ultrasound in a week or so... CVI I think it is called. The leg pain happened after one day of overexercising my legs . At the time I was eating VERY LITTLE salt(I could feel the veins in my leg constrict)... I went on a veggie diet and no processed foods so my salt intake was minimal.

 

[peachychou123]

Just woke up (out of REM sleep) and my HR was 120. That was 15 minutes ago and it's still at 100+ and I'm laying here wondering if I should try sitting up and drinking something or see if it goes away on it's own. I know some people's tachycardia is much higher than this, but this is still very high for me considering my HR used to be 70-80 waking up. I didn't eat much yesterday but it doesn't seem to have helped much. Feeling shaky and anxious & hot and sweaty too 😕

[Pistol]

@peachychou123 - have you tried drinking Gatorade first thing upon waking up? 

[peachychou123]

Well, I'm feeling terrible today. Still shaky, exhausted, burning stomach and diarrhea, slight temperature, HR higher than normal. My reflux was terrible last night and I woke up with an extremely painful esophagus. I'm not sure if all these chills and palpitations are due to a viral illness, a hyperadrenergic pots flare, or if this UTI might be getting worse :/ (anxiety plaguing me again!)  The thing is, even when I was having chills and palps, my infection markers came back normal. So I don't know what to think. The ER doc said to come back if my symptoms worsen but going to the emergency room and waiting to be seen is very stressful in itself. If it gets very bad I will go. I hate feeling this ill and contacting my doctor so often makes me feel like a nuisance or hypochondriac. 

My anxiety is sky high right now. I want to take my beta blockers but I was told not to in case they mask signs of infection or shock. I just can't relax whatsoever. Sleep was the thing that let me forget all my anxiety and health problems but now I'm scared because of my waking tachycardia. I don't know if it only happens on waking or all through the night. I've been crying all morning because I feel so weak and exhausted and anxious from these chills and the tachycardia. I'm only 25 and I feel like an old lady. Some days the fact that I have a chronic illness hits me hard emotionally. It's a beautiful autumn day and I just want to go outside and get fresh air, see my friends, go to a concert or bar like everyone else my age does, but I'm so dizzy and shaky and ill I can't. I'm struggling at the moment.

[StayAtHomeMom]

7 minutes ago, peachychou123 said:

Well, I'm feeling terrible today. Still shaky, exhausted, burning stomach and diarrhea, slight temperature, HR higher than normal. My reflux was terrible last night and I woke up with an extremely painful esophagus. I'm not sure if all these chills and palpitations are due to a viral illness, a hyperadrenergic pots flare, or if this UTI might be getting worse :/ (anxiety plaguing me again!)  The thing is, even when I was having chills and palps, my infection markers came back normal. So I don't know what to think. The ER doc said to come back if my symptoms worsen but going to the emergency room and waiting to be seen is very stressful in itself. If it gets very bad I will go. I hate feeling this ill and contacting my doctor so often makes me feel like a nuisance or hypochondriac. 

My anxiety is sky high right now. I want to take my beta blockers but I was told not to in case they mask signs of infection or shock. I just can't relax whatsoever. Sleep was the thing that let me forget all my anxiety and health problems but now I'm scared because of my waking tachycardia. I don't know if it only happens on waking or all through the night. I've been crying all morning because I feel so weak and exhausted and anxious from these chills and the tachycardia. I'm only 25 and I feel like an old lady. Some days the fact that I have a chronic illness hits me hard emotionally. It's a beautiful autumn day and I just want to go outside and get fresh air, see my friends, go to a concert or bar like everyone else my age does, but I'm so dizzy and shaky and ill I can't. I'm struggling at the moment.

Having POTS can be a life changer but it does get better. Even though it doesn't seem like it, your symptoms will ease. 

Have you seen a GI and had a scope done to make sure nothing is going on with your stomach?

Contacting your doctor does not make you a nuisance. They should know if things are bothering you so that they can try to help. That is what they are for. 

I hope you feel better soon. I would suggest trying to find something that helps you take your mind off what is going on. Read a book, or play a video game. That's what I try to do. 

[voxel]

Do you have a way to measure your BP at home? On good days my BP is normal and regulated. On bad days my BP just rises randomly (could be after waking, could be after sitting, etc) and drinking water/electrolytes and resting will drop it back to normal. Also being stressed will raise BP unfortunately. For me it was a vicious cycle... high BP, tachycardia, lower BP via fluids, anxiety, even higher BP, more tachycardia.

The diarhea is odd though. Diarrhea alone can flush out all nutrients and cause serious issues like dehydration and electrolyte imbalances that trigger sinus tachychardia.  Food sensitivity can cause serious diarrhea.

 

[peachychou123]

40 minutes ago, StayAtHomeMom said:

Having POTS can be a life changer but it does get better. Even though it doesn't seem like it, your symptoms will ease. 

 Have you seen a GI and had a scope done to make sure nothing is going on with your stomach?

 Contacting your doctor does not make you a nuisance. They should know if things are bothering you so that they can try to help. That is what they are for. 

I hope you feel better soon. I would suggest trying to find something that helps you take your mind off what is going on. Read a book, or play a video game. That's what I try to do. 

Thank you for your kind words and sorry for whining guys, it's just that feeling ill just makes me anxious and therefore more negative. Beta blockers made me feel so much better, but I guess I shouldn't have got so complacent while on them. It's just frustrating that I can't take them right now. My doctor still blames almost everything on anxiety unfortunately. Anxiety is a big part of it, but I became symptomatic first, then got anxious because nobody seemed to care that I couldn't walk 10 yards without gasping for air or feeling like I needed to sit down back in 2012. A TTT proves I have POTS. But it just bothers me that nobody thought to look for the possible underlying cause. I was basically left to deal with it on my own. At least I had an echo and holter I guess, but that was almost 6 years ago. I had a gastroscopy 5 years ago and they found a hiatal hernia. They think I developed it from vomiting very hard a few months before. My GERD causes a lot of pain but it can mostly be managed through PPIs. Getting referrals from my GP is a task in itself. Currently I need to see a cardiologist, neurologist (because I've never seen one before and the possible underlying neurological causes have not been explored), see an endocrinologist and get blood work done, get another gastroscopy, and also of course get help for my anxiety. A pretty big ask for my doctor. The past 10 days have been hard. I just want to feel back to my normal again.

[peachychou123]

21 minutes ago, voxel said:

Do you have a way to measure your BP at home? On good days my BP is normal and regulated. On bad days my BP just rises randomly (could be after waking, could be after sitting, etc) and drinking water/electrolytes and resting will drop it back to normal. Also being stressed will raise BP unfortunately. For me it was a vicious cycle... high BP, tachycardia, lower BP via fluids, anxiety, even higher BP, more tachycardia.

The diarhea is odd though. Diarrhea alone can flush out all nutrients and cause serious issues like dehydration and electrolyte imbalances that trigger sinus tachychardia.  Food sensitivity can cause serious diarrhea.

  

I've been taking some supplements. I don't have a BP cuff because measuring or thinking about my blood pressure or HR often makes me feel more anxious tbh. I only do it if I'm really symptomatic, otherwise it just distresses me. I have noticed that on the times the Dr took it and it was high, I actually felt more dizzy sometimes than when it's lower. My Dr said high BP doesn't make you dizzy but I know a lot of people who get dizziness with high BP.

I'm not sure if the diarrhea is viral or just because I'm so anxious and my esophagus and upper stomach feel irritated. I'm trying to keep my salts/electrolytes + fluids up. But even getting to the local shop to buy some pedialyte is a struggle atm. 

[voxel]

1 hour ago, peachychou123 said:

I've been taking some supplements. I don't have a BP cuff because measuring or thinking about my blood pressure or HR often makes me feel more anxious tbh. I only do it if I'm really symptomatic, otherwise it just distresses me. I have noticed that on the times the Dr took it and it was high, I actually felt more dizzy sometimes than when it's lower. My Dr said high BP doesn't make you dizzy but I know a lot of people who get dizziness with high BP.

I'm not sure if the diarrhea is viral or just because I'm so anxious and my esophagus and upper stomach feel irritated. I'm trying to keep my salts/electrolytes + fluids up. But even getting to the local shop to buy some pedialyte is a struggle atm. 

Yeah dizziness/syncope happens when you have low BP - at least for me. I absolutely need to know my BP... it's the first sign of future tachycardia for me. I was obsessive measuring my glucose for a few weeks and found that exercise pointless. There was no correlation between my glucose and HR spikes. And I'm not diabetic as suspected by doctors.

Uber/DoorDash/Instacart have been amazing for me. I have not driven for 7 weeks... a friend jokes I have PTSD from driving.  The times I have attempted in the last 3 weeks I had tachycardia. It's mostly Uber and friends picking me up.

Pedialyte is okay but sugary and missing out on calcium, magnesium, folate, B12. I find raw spinach, kale, carrots, celery, and broccoli sooth my high BP better than electrolytes. Of course I still drink electrolyte mixes all day

[peachychou123]

I'm concerned about this high temp and diarrhea and tachycardia and chills atm. Still don't know if it's an infection or viral.  The ER doc gave me a box of cipro but I only took one and got anxious after reading all the heart side effects. Well now that I'm feverish I've taken another one. I feel like such an idiot. The ER doc wanted to keep me in for IV antibiotics but I just wanted to go home. I called my GP and they were angry because I didn't end up taking the antibiotics like I was told to. So now I think I've made things worse! Now I'm worried I'm going to end up with sepsis or something. I've never felt so anxious. Why didn't I just take the IV antibiotics in the ER. I don't want to go back up to a&e but I keep remembering the doctor's advice to come back if things got worse. I feel so stupid now. 

[Pistol]

Dear @peachychou123 - if I were you I would do what the docs tell you or you will never get ahead. Yes - if you read ANY med's possible side effects you could get scared but they do not apply to everyone. Do no think that they all will happen to you. I would take the Cipro AS DIRECTED by your doctor, it should help for your elevated temp and may also help for diarrhea if it is bacterial ( my husband has taken cipro for both urinary symptoms as well as diarrhea and had NO side effects ). I have POTS and have no problems with antibiotics. Usually it is the infection that makes POTS worse, not the antibiotic. If you continue to feel so ill you really should go back to your doc - obviously you are not getting better ( and no taking your medicine does not help either! ). Please take care of yourself. I also get anxious about taking new meds but I also take them b/c I know what will happen if I don't - I will get worse. And usually I tolerate most meds just fine. Be brave! --- Also I would like to comment on your beta blocker: you said you stopped it because you are ill. I am not sure how often or how long you have been taking your betablocker but once you start it you cannot just stop - that could be the reason for your tachycardia!!!!! You have to wean off them slowly! And you have to do it under supervision by a doctor. Please - if you do not want to take your medication that is your decision but you truly should inform your doctor of that so he can warn you about possible complications from stopping. You also can check with your pharmacist if stopping your medication is causing your current symptoms. I had to stop my BB once for 3 days for a TTT and I was VERY symptomatic with tachycardia and restlessness etc from it - I KNOW what it can do to you when you stop suddenly!

[StayAtHomeMom]

3 hours ago, peachychou123 said:

Thank you for your kind words and sorry for whining guys, it's just that feeling ill just makes me anxious and therefore more negative. Beta blockers made me feel so much better, but I guess I shouldn't have got so complacent while on them. It's just frustrating that I can't take them right now. My doctor still blames almost everything on anxiety unfortunately. Anxiety is a big part of it, but I became symptomatic first, then got anxious because nobody seemed to care that I couldn't walk 10 yards without gasping for air or feeling like I needed to sit down back in 2012. A TTT proves I have POTS. But it just bothers me that nobody thought to look for the possible underlying cause. I was basically left to deal with it on my own. At least I had an echo and holter I guess, but that was almost 6 years ago. I had a gastroscopy 5 years ago and they found a hiatal hernia. They think I developed it from vomiting very hard a few months before. My GERD causes a lot of pain but it can mostly be managed through PPIs. Getting referrals from my GP is a task in itself. Currently I need to see a cardiologist, neurologist (because I've never seen one before and the possible underlying neurological causes have not been explored), see an endocrinologist and get blood work done, get another gastroscopy, and also of course get help for my anxiety. A pretty big ask for my doctor. The past 10 days have been hard. I just want to feel back to my normal again.

Check with your insurance. My insurance does not require a referral. Some doctor's offices may though. 

Has your hiatal hernia resolved? If not try a good chiropractor. Chiropractors aren't for everyone but the scientific theory behind their practice seems sound. 

I am having the same issue with my underlying cause. None of my doctors seem to care. They acknowledge there is one, but they are playing the waiting game instead of searching for it. I have plans to go to a "university setting" soon to try to investigate underlying causes. I need to collect all of my records first and I am wanting to wait until my oldest son gets tested before I go. The more data I have the better chance I will have. 

My POTS specialist is a neurologist. I am actually thinking of seeing a rheumatologist because I have never seen one and maybe they will find my underlying cause. My mom (who has RA) has suggested I see one considering all the joint pain and swelling I get that has all started when I was a teenager. But I get dismissed so easily because I am so young that I haven't wanted to go til I have some solid data to show. 

It seems like they only try to find an underlying cause is the patient demands it or if the symptoms are just that bad. When my mom told her PCP I had POTS she told her it was no big deal as long as she takes her meds. It feels like a lot of doctors have that attitude towards POTS. I wish some of these doctors could walk in my shoes for a bit.  

We all feel your frustrations, and hopelessness. Dysautonomia is a crappy diagnosis. My best suggestion is try to find the little joys. And try not to compare yourself from before you got sick. Symptoms usually cycle, so even it is bothering you now, it will not always bother you. 

[dannyg]

@peachychou123

I searched and found your post here and was wondering. Did they find out what was causing your HR to be so high waking you up ? Just wondering because that's whats been happening with me for about a week. Its waking me up from my sleep I think. I don't have Sleep Apnia, but during the night I wake up maybe 2 or 3 times, and my HR is way up, then goes back down to normal after a minute laying there. It scares me more than anything because when Im up, I can walk around the house and do things and know when my HR is going fast and I can sit down to control it. Sleeping it just happens and wakes me up and that I cant control.

Did they ever find out what it was causing it or does it still happen ?

[MomtoGiuliana]

This is a common POTS symptom in my experience.  I know it is scary.  When I first developed POTS I had this same symptom (high heart rate waking me up at night).  Beta blocker should help.  Extra fluids too, but we do lose fluid at night and can't drink and sleep at the same time!

[Caty]

Danny and peachy, this is how my dysautonomia started- increased heartburn, taquicardia that would wake me up or that would begin as soon as I changed position in bed, the tachy came together with nausea and a shaky, a tremor feeling inside as well as teeth chattering, anxiety and hypersensitivity to sound. This happened early morning, just like you say. Symptoms have slowly improved with medication- I don’t have the tachycardia because I am on Atenolol, antihistamines help with the heartburn, the nausea, the fatigue and other esophageal symptoms I had during the day. But still last nigh I woke up shaking/ teeth chattering when I changed positivos in the early morning. This has remained. Of course the anxiety and crying and negative thoughts all come together.

My dr. says this is typical of dysautonomia and it is high adrenaline at that time of day. For some reason symptoms had gotten worse this last week...

Hope you are both feeling better. Like Pistol said, we have to use the meds if we want to feel better. Have to take the risk, and starting slow- with a tiny dose- makes side effects ( in case there’s any) tolerable or limited.

Wish someone could tell us what meds might help. Someone has mentioned Clonidine but I can’t try  it because my BP is Low.

Please tell us how you are doing.