KristaKupcake

10 hours ago, Pistol said:

This just about sums it up!!!!! 

It is probably one of the most frustrating parts of my job. I am often the first person to do any type of exam on a patient - physical or diagnostic. Doctors really need to trust their gut and still rely on their skills but they just want to send people off to diagnostic imaging instead! Ugh. I do Ultrasound examinations specifically but I work closely with X-ray, CT and Nuclear Medicine. I do not deal much with MRI. 

Oh goodness that is bad timing for sure :(. At least you have a contingency plan if things don’t go well. I really hope you get some relief from your flare symptoms soon. I hope it helps to know you aren’t alone and there is a community of people here to chat / vent to :). POTS is an awful disease that has no rhyme or reasoning. Hopefully your little one will be well behaved for you (as well behaved as a 3 year old can be haha). *hugs*

It makes it so much worse when you have to care for others as well as yourself when you are feeling so unwell. Having a child and being a mom is hard enough - let alone having POTS symptoms / flare. Having the fluids and salt will help you from getting worse I hope. If you aren’t able to be upright much just make sure to keep moving your legs / wiggle toes to keep the circulation goes. Just baby steps and little things you can do when you aren’t able to do much. Do you have a close friend or family member that could help you out while your hubby is away? 

On 2/4/2019 at 11:13 AM, Aida A said:

Hi All, 

After a long struggle with POTS flare! I feel that I'm ready to go back to work but little anxious and worried about it! Wanted to check with you, are any of you able to do full time job with no problems! My job is mainly seeing patients as a nurse personal assistance and take their vitals and room them. I need encouragement! I need to go back to work otherwise, I'll feel desperate. Please let me know if any of you able to do a full time job and of any tips to keep you upright while in it?

 

Thanks,

Aida

Hi Aida!

I am happy to hear that you can return to work :). I work at 2 hospitals here as an ultrasonographer (ultrasound technologist) and I was off work for about 4 months while I was struggling with (presumed) POTS. I completely understand the feeling desperate. I was feeling like I was a burden and useless while being home and not able to work. I didn’t have a sense of purpose. 

Our return to work program is really great through occupational health so I very gradually increase the amount of days and hours of work. I started at 4 hour shifts 3 days a week and progressed weekly from there until I reached 8 hour days 5 days a week. Yesterday was my first day back to full time! 

I always wear my compression socks - this definitely helps with my circulation and edema. I always have my water bottle near by too. I bring a 1 litre glass water bottle with me and I make sure to finish it during my shift. We do a combination of sitting, standing and walking which also helps to keep me moving but also gives me tome to rest. I find keeping my brain engaged distracts me from my symptoms. I always have lots of little snacks packed in my bag too in case I need a bite to eat quickly. 

Wishing you the best of luck! 😊

It sounds like you could be in a flare right now for sure - especially when the usual treatments aren’t helping you out :(. I wonder if having more IV fluids would be more beneficial to you? I’m sorry you are going through this right now. I hope you can take things easy so as to not injure yourself again. *hugs*

I’ve had MANY CT scans in my lifetime (at least 11-12) because I had cancer at age 20. I’ve also had a number of Nuclear Medicine tests and X-rays. I have had 3 CT’s alone since September and I know I will need another CT again soon to check if my blood clots have dissolved in my lungs. 

That being said, I’m not too concerned about the radiation. I am a cancer survivor and I still do not really worry. Is it more radiation than an X-ray? Yes. Should you be worried? Not necessarily. 

I work in radiology and we limit radiation exposure to younger patients but we still do a CT if it is medically necessary. There are also shields they can use to protect your thyroid, breast and reproductive organs. You can ask to have these on during a CT. 

It is true that every CT you have does increase your risk of developing cancer by a small amount (I think 0.011% if I remember correctly). However, you would have to repeatedly get CT scans over time to truly be at risk of developing a cancer. 

I think as patients we need to use our commen sense: if the CT is for something serious like pulmonary embolism, stroke, aneurysm / active bleeding, etc then the benefits ALWAYS outweigh the risk. Things like minor aches and pains really should be investigated via imaging that does not use radiation (ie. ultrasound) or be investigated clinically (no imaging). Blood work, urine samples and a good physical exam can give physicians a really good idea of what is going on (most of the time).

Unfortunately the problem with improving medical technology is that many doctors want to replace old-fashioned physical exams with having diagnostic imaging tests instead. This is NOT reasonable nor a safe thing to do. I see it happening in my line of work and it is not okay.

If you have a doctor that orders diagnostic imaging tests for every little ache, pain or complaint then you really SHOULD question it. Ask yourself: is it really worth it? Are my symptoms bad enough that I would risk a small amount of radiation to get an answer?

As a patient it is your right to refuse any exam you are not comfortable with. 👍🏻

Sorry this is so long - I’m just passionate about health care 😊. 

I’ve just recently been diagnosed with bilateral PE’s (September). I’m on Xarelto to help dissolve them. I’m curious about APS - there is a history of blood clots on my mom’s side of the family (my grandmother died from one) and my mom has fibromyalgia. I may ask the hematology team next time I see them 👍🏻. 

On 12/9/2018 at 6:48 AM, bombsh3ll said:

 

I am guessing it is the Mirena you have? I've thought about this too, it might be a good fit ie no or little bleeding but still the monthly hormone fluctuations if it didn't suppress ovulation. 

B x

I had the Mirena for 5.5 years but now I actually have the newer, smaller IUD. It has less hormones than the Mirena - it is called the Kyleena. I’m loving it so far! Aside from the obvious pain of getting it inserted, it has worked great and my body is used to it now.

I have noticed I experience slightly more symptoms now with my cycle because there are fewer hormones. It isn’t enough to make me go back to the Mirena though. I just have a bit more acne, cramps and bloating now with the Kyleena compared to when I used the Mirena. You think being almost 33 that acne would be done. At least my flow is still controlled well - I think it is better controlled now with the Kyleena so that is a bonus! 

You defintly still ovulate with the IUD - I am prone to cysts so I feel when I am ovulating and/or having cysts rupture. That has been normal for me for years and they aren’t problematic cysts (ie. they go away on their own). 

I agree it looks like probable blood pooling. 

I am not on birth control pills anymore - I quit them many years ago now before my POTS symptoms started. Now I have blood clots in my lungs so definitely not going back to the pill.

I have an IUD implant in my uterus instead - I do not get periods at all anymore (just the odd bit of spotting here and there). 

Even though I don’t bleed I still feel worse during that time of the month - not sure why that is though. I’ve started experiencing bad cramps too - haven’t had those since this was implanted in the spring. I make sure that I keep up with fluids and consume more salt than usual. 

5 hours ago, FileTrekker said:

Haha, yeah, but given the average human being has (at least) 86,400 beats a day, often over 140,000 beats per day, even 3,000 in one day is only 3.4% of all heartbeats. So not very significant.

In your case only 0.02% of your heart beats are ectopic, so you're laughing, lol.

They're reaaaaaaaaaly annoying though.

Love the science! That is amazing.

Totally agree - they are very annoying! Especially when they literally take your breath away 😕

16 hours ago, FileTrekker said:

I'd be pretty chuffed with only 20 PVCs a day, I have nearly 3,000 a day!

I think anything under 20,000 and the doctors generally don't consider it significant at all, indeed they just see it as normal.

3,000 PVC’s! Holy cow. I didn’t know that was possible! No wonder they weren’t concerned about mine 😂

14 hours ago, Scout said:

I am wondering how common this is?

I get — and increasingly — irregular heartbeats, but it seems to only be when I am either sitting, or getting into bed and lying down. Sometimes, it happens when I sit down to eat, after I have had a few mouthfuls.

I've had several times recently, where I will have a succession of 3 to 5 PVCS (they may be PACs, but they feel lower down, so I am assuming PVCs), and then my heart will race very fast, for a while after, almost as if to reset itself.

It always feels so intense when it happens, this sudden, violent thumping in my chest, and then, slowly gets back to normal.

Curious how common this is? It can be quite startling.

 

I’ve had heart palpitations for years. With my POTS symptoms I started being tested though cardiology. I didn’t realize what kind of palpitations they were - I have PVC’s apparently. I’ve had 2 episodes today already that I was aware of - but my 24 hour monitor showed I had upwards of 20 + PVC’s a day. Cardiology is not concerned about this though. I seem to have them more and more frequently as I age. 

I feel my heart ‘flip’ in my chest, stop beating, I stop breathing for a second or two and then it starts beating rapidly and then normalizes after that. Aside from the brief breathlessness it never really others me. Sometimes when it ‘flips’ it can be a harder ‘thunk’ in my chest than other days so it varies in how I feel them. 

I have not done the Levine protocol but I started doing my own exercises at home to start feeling better. So far it seems to be helping, though it can be very difficult some days. I do squats and lunges (can make me lightheaded), calf raises with weights, bicep curls and other arm / shoulder exercises, crunches / bicycle kicks, leg lifts and of course, the treadmill. I’ve been slowly increasing the amount of weights I lift as well as increasing the difficulty (incline) and speed I walk at. Fingers crossed it continues to have positive results - so far so good. 

Today I did some vacuuming too - that is a workout on its own!

Glad to hear you are hydrating to avoid getting dehydrated. Electrolyte drinks can help too. Sometimes simple things like vitamins (especially magnesium) can cause reactions too. Maybe keep a journal of meds, foods, etc to see if a pattern develops? Hopefully your doctor can help to figure this out. 

Raw veggies or too much veggies and fruits can sometimes aggravate the colon too. I know carbs can aggravate POTS but sometimes they can help to bind you up a bit more too. Dairy for me usually causes gas/diarrhea but it used to cause constipation for me years ago - maybe experiment with foods / diet? 

1 hour ago, Derek1987 said:

Seems like it's getting worse. Went to sleep nauseated and woke up immediately nauseated. I always have some weird feeling in my stomach too. I really started noticing it when I had my 3rd fainting spell that happened at work. It's a weird feeling that goes in a line straight down my stomach. 

I had so much constant nausea in the beginning of my illness. At first I was treated for an ulcer. It helped dramatically but I still struggled with nausea and lack of appetite. They gave me anti-nausea medication to help (Zofran).

I always have peppermints nearby - especially first thing in the morning when the nausea is worse. I suck on the peppermint until the nausea passes enough for me to get something to eat. Licorice root can help with acid problems that cause nausea too (the deglycyrrhizinated kind wont affect blood pressure). I also have gum everywhere too to chew on - it helps to give me a distraction. Occasionally I will use gaviscon if I feel it is a weird stomach sensation (not regular nausea). 

Eating bland foods can help. I know the last thing you want to do is eat but if you don’t then you just feel worse (no energy or strength). Plain oatmeal, crackers and toast were my go-to things I started with. I also picked up vanilla protein Ensure to make sure I was getting some nutrition. I’ve heard some people drink diet soda for nausea or protein powder mixed into yoghurt. I’ve heard of grapes (frozen grapes) helping as well. 

I’ve been taking Salt Stick Vitassium pills everyday to get my sodium intake up without being too harsh on my stomach - regular salt pills destroyed my gut and make me nauseated. 

I hope the nausea will settle down for you! It is awful :(. 

2 hours ago, Crazycatlady said:

Hey guys 

Juat got DXd with POTs last month. Around this time since it’s been getting cold, my fingers have been turning white/stinging/other classic Raynaud symptoms.

 

Is this related to dysautonomia? I tested negative for autoimmune issues (although my moms side has a lot of them)..

 

just curious to hear your stories 

It is possible that it could be POTS related (some people can vasoconstrict as opposed to vasodilating in their extremities). 

I don’t have Raynaud’s ‘officially’ but I have similar symptoms. I did chemotherapy years ago that can damage the vascular system. Over the years I’ve noticed my hands and feet get very cold very quickly and will hurt/loose feeling. I have some numbness in my middle fingers too which is a newer symptoms. If I grab something out of the freezer I essentially loose feeling in my fingers right away as they get so cold! My fingers will feel almost as cold as what I grabbed from the freezer.

Sometimes I have to run my hands under warm water (not hot!) to get the feeling / blood flow back. It helps to always wear gloves when the temperatures start to get cold outside. I try to wiggle my fingers and toes anyway to keep blood flowing so it doesn’t pool, but also so I keep warm and don’t go as numb. 

3 hours ago, JoshMW said:

 

After about a year the beta blockers started becoming useless. The head pressure was worse than ever and my sleep was killing me. I had one particularly bad night; I could feel my pulse in my face, neck, fingertips, everywhere. I could hear the blood pulsing in my ears while laying in bed. Standing up felt dangerous. The next day I had a mental breakdown and went to the hospital, I didnt want to leave until I was fixed. I was prescribed anti depressents and began ceasing beta blockers.

Have you tried using different beta blockers or just the one? Some are cardiac-specific while others are non-specific and have more widespread effects on the body. Maybe other blood pressure medicines could help? It certainly sounds like you have POTS or some other type of dysautonomia. 

3 hours ago, JoshMW said:

Eating now gives me the same sensation as standing, so I lost a lot of weight in bed drinking only juices. Eating has become a 2 hour event, I eat food and then I walk around for ages (bored out of my skull) trying to help circulate my blood. Doing abdominal crunches helps too. It's getting better slowly. I can't get to sleep at night because of the strong pulse in my face when I lay down, especially the left side external carotid artery. I get episodes of explosive pressure deep in my nose, I have to use cold packs and chew on ice. I think my carotid arteries are dilating in response to the decreased flow elsewhere? My tachycardia is actually improving while these other symptoms get worse.

I’ve heard some people have used ibuprofen when they eat to reduce blood pooling in their stomach - I’m not sure if this will help you. I started with intense nausea, lack of appetite and weight loss as well. I lost 20 pounds initially. I treated for a stomach ulcer (probably stress-induced and overuse of Advil). This helped my stomach to heal. I still get morning nausea but I can eat smaller meals now. 

I don’t have the head pressure but I see my pulse all the time in my vision and I hate it! It is so distracting and dizzying at times. 

3 hours ago, JoshMW said:

I take magnesium and low dose prozac. I also take tyrosine, it helps me keep up with the demand for catecholamines and prevents me from getting fatigued and stressed out (highly recommend to anyone experiencing fatigue). Beta Blockers do nothing to help anymore, I only have ice water to help when I get an attack. And thats about it.. my future seems very uncertain now.

I’ve on the back of your neck or putting your face in a bowl of ice water helps to calm down the nervous system - so it makes sense that cold helps you feel better. It is great for calming anxiety attacks as well. Putting the face in ice water can be a bit too shocking when you have heart issues though so be cautious if you do that. 

I’m sorry you are going through all this. It really affects your life in every way and can be discouraging and defeating. Know that you are not alone and there are lots of great people here to chat with. 

12 hours ago, Hippopotsamus said:

Thanks everybody for your responses. I have been hesitant to get one (got shot every year before developing POTS, but since my diagnosis have felt like I’m generally more sensitive to things, have had abnormal responses to things I used to tolerate), but I might be brave and get one. I work in a pharmacy and have sick people coughing on me all day! And I got the flu last year. It was two weeks of awfulness. 

I was really scared to get the shot because I’m hypersensitive as well since my POTS symptoms started. I can say now that other than a sore arm, I haven’t had any adverse effects from the shot. Definitely better to be protected than to chance getting the flu - especially since you work in a pharmacy. 

Thank you everyone for your feedback 😊

I got my flu shot a few hours ago. My arm is already sore, despite moving it around to keep it from getting stiff 😜.

I know tonight I should sleep well - I usually get really tired the same day I’ve had the vaccine. Pleasant side effect 👍🏻. 

Hopefully this thread will help others if they are unsure about the vaccine in the future. 

1 hour ago, Darth_Sarah said:

I was concerned about this last year since I'm already barely functioning and asked my doctors a lot about it. They said my inflammation could go up (a problem for me in particular) and there could be some uncomfortable symptoms for a little while, but if I got the flu inflammation and all the symptoms would be so many times worse that it's absolutely not worth the risk of skipping the shot. And after some research to double check what they said, I absolutely agree. I'm just getting old enough to start thinking through some of these decisions for myself and getting the flu shot each year is a decision I'm very confident in.  I hope this helps

P.s. I also suffer from asthma so the FluMist option is a no go for me, I have to do the injected vaccine. 

Thank you for the response - I feel more confident now to get the vaccine 😊

I am so sorry you are going through this Lieze. It is hard enough not being well, let alone dealing with unsupportive family. Do you have any close friends that are understanding and could offer help? You are a champion for doing all that you do! I really hope that your POTS isn’t getting worse and hopefully the holter monitor results can give you piece of mind. Given all that you have been going through, I wouldn’t be surprised if it is anxiety episodes, but I’m glad you are getting it looked into just to be safe. Do you think your kids could start helping? I wish I could offer more help / advice to you. Hopefully venting on here will help. *hugs*

15 hours ago, StayAtHomeMom said:

I have never gotten it. I would ask whoever is giving you the shot if it is a live virus. If it is I would see if you can get one without it if you are worried about your immune system response. My sister in law used to get them every year but then she would get the flu. If she didn't get the shot she didn't get the flu. It happened for over 10 years. So now she just doesn't get the shot. 

Thank you for the info - I will ask if it is a live virus or not 👍🏻. I never would have thought to ask. 

I get the flu shot every year typically. The one year I didn’t get it years ago I ended up getting the flu. I certainly do not want to risk getting sick this year ☹️. 

4 minutes ago, p8d said:

My ANS Dr tells me to get one every year.  I have had one the past three years, sore arm but that’s all.  Maybe fatigue but I am always fatigued so who knows?  Much better than getting the flu.

I agree. I am a little afraid of side effects but I’m more afraid to get a full blown flu - I don’t want to imagine what that would be like when not feeling great to begin with 

On 3/31/2012 at 11:26 PM, WyomingGal said:

yes!! or fluorescent lighting. I feel so much more comfortable at home or outdoors. But I also feel like my anxiety plays a role, too. I chew gum and stay try to stay focused on one thing. Like only my table or place setting at a restaurant, instead of surveying the room and getting overwhelmed. Also, at a big store, i look at the ground sometimes, or my phone every once in awhile to get focused.

We sound so much alike! I chew gum to help distract from visual problems (dizziness/imbalanced feeling) and to try to distract from my throat problems. I feel better when I focus on just one thing in front of me (like my phone, colouring/writing, and sometimes TV). I got a bit overwhelmed in Walmart before as I was walking and scanning isles up and down - definitely made my symptoms worse. Maybe the lighting made it worse too.

When I first started getting sick, I couldn’t even stand a ceiling fan being on with the lights because it made me so dizzy. All I could see was the shadows of the fan swirling around the room. I actually got my family to turn the fan off. That was before I knew I was sick. 

In general I feel better outside and when I am walking / actively doing something. I feel worse when sitting still - I try to distract myself by pumping my calves and flexing my toes, etc. I can still get overwhelmed even just sitting at a cafe chatting with someone. More comfortable at home for sure. I definitely get anxiety about situations where I am not at home. I may have to try to return to work soon and that gives me anxiety because I will be actively chatting a lot and need to be focussed. I also will either be sitting or standing for longer periods of time.