Dizzy from my own heart beat

[KristaKupcake]

Hi everyone,

 

I am new to the forum. I have not officially been diagnosed as of yet but I feel I have a form of dysautonomia / POTS.

I became suddenly ill August 15 (nauseated, extreme fatigue) which progressed into having tachycardia upon position change  - especially when standing. My heart rate goes from 70-125+ BPM and the pulse stays elevated until I lay down. I am in Canada and I have been to the ER a few times due to the tachycardia and dizziness (near constant). ECG's are normal, bloodwork is normal, etc. They do not seem to know anything about POTS here. I'm awaiting a cardiology referral and 24-HR heart monitor, among other tests. I have nausea every day and a lack of appetite (worse in the mornings). I am getting frequent headaches (before all this I suffered from migraine headaches). I feel somewhat better at night. But the dizzy feeling is not going away despite making sure I am well-hydrated, increasing my salt intake, eating small meals throughout the day, etc. 

My question is do you get dizzy from your own heart beat? I've been taking very low dose propanolol (5 mg a day) for the past week which has helped reduce the heart rate spikes, but it has not helped the dizzy feeling. When I am upright I do not notice it as much, but as soon as I try to sit and relax or lay down, all I see is everything going side to side in tune with my own heart beat. It is so disorienting! I am hyperaware of my own heart beat. I also get a bit of a more normal dizzy feeling (like I'm falling or off-balance) off and on in any position, but it comes and goes randomly. If I lay down for an extended period of time it seems to calm my heart down slightly more and almost helps the dizzy feeling. 

I am desperate for help but feel like I am not getting any help form my doctor. Is there anyone experiencing something like this? Has anything helped you? I am currently using DGL liquorice root for nausea. I tried using some huperzine A the last 2 days but I don't think it did much for me. 

 

[bombsh3ll]

Welcome to the site KristaKupcake! My heart goes out to you, it really does. That is just how I started, also in August (4 years ago, the 4th August - I too can remember the exact day and even hour of my onset). I hope you get some tests and appropriate medical treatment soon. Do you know if you will be having a tilt table test arranged? That is the usual way POTS is diagnosed if that is what you are suspecting, and with that pulse increase it certainly a reasonable line to pursue. It can also be diagnosed with an active standing test if the hospital doesn't have a tilt table. The most important thing is to see someone who knows what POTS is or at the very least is willing to look it up. I believe the official diagnostic criteria for POTS require the symptoms to be present for at least 6 months, however that should certainly not preclude you from getting help before then. 

I wish I had the answer, I am still looking, but there are a few things I wish I'd known when I first became unwell - salt and fluid is good, you are already doing that. Basic lifestyle advice also includes raising the head of your bed to help retain fluid, and you could try compression stockings/tights to help keep the blood in the top part of your body. What I think really didn't help me in the first few weeks was that I lost a large amount of weight through nausea and having no appetite, and I also became very deconditioned by lying down most of the time waiting to get better, hoping it was just a temporary illness or something for which I could get treatment & recover once the problem was identified. 

If I had that time again I would aggressively try to avoid losing weight and muscle tone by making sure I had the most effective anti-nausea medication from the off, and getting in as much energy and protein as possible in the form of supplement drinks if needed. I would also have started exercising seriously much sooner - even if you can't stand or walk much like me you may still be able to use a recumbent stationary bike to preserve the strength in your legs and heart. I bought one several months in which was not too expensive and still use it nearly every day.

POTS, if that is what you have, or similar dysautonomias are NOT caused by deconditioning, but most of us quickly become deconditioned due to being so unwell without a diagnosis or any proper care, that we end up worse due to not knowing what is going on in the initial stages. If you can move, keep moving, however hard it is. 

Finally, and this may make the biggest difference (it did to me), you mention taking DGL licorice root. The licorice root with the active ingredient in it, glycyrrhizin, is far, far more effective for POTS and other orthostatic disorders as it helps to boost blood volume (Check with your doctor before taking to make sure you have no contraindications or incompatible medicines). I take Swanson's licorice root capsules, 2 x 450mg daily. These are a herbal supplement that can be bought from amazon & many health food stores. 

It totally transformed my quality of life for about a year until the effects waned, but I do wonder if I'd discovered it earlier on whilst I still had a reasonable level of cardiac fitness and muscle mass, it may have entirely altered my trajectory.

Take care, 

B x

[StayAtHomeMom]

My pulmonologist recommended a half a pill of over the counter dramimine to help my dizziness. Not sure why it helped but it did at that time. Check and see if it is safe for you to try. I am sure you are at the point where anything is worth trying. 

I live in the US and even here POTS isn't well known. I had to fight every step of the way to get my diagnosis. Even now when I meet a new doctor or nurse they will ask what it is. 

When my POTS presented it started with a breathing issue (still have 3 years later) and doctors kept saying it was asthma. With perfect PFTs they kept giving me inhalers and breathing treatments. They all made me feel worse. I know now why but at the time I didn't realize it was causing my HR to be worse. 

Things will get better, especially when you find that one doctor. It took me over a year but I found mine and am now doing a lot better. Even with my flares, I am still better than I was 3 years ago. If you don't agree with your doctor, find a new one. They work for you, not the other way around.

Good luck and I hope you feel better soon. 

[KristaKupcake]

Thank you for the reply Bombsh3ll. It means a lot. I definitely have been suffering from the nausea and weight loss. I find I have no desire to eat until my stomach starts feeling more unwell / heartburn-like. The ironic thing is I get nauseated once I get hungry. I’m wondering if the propanolol is causing some blood sugar drops when this happens.

I’ve lost about 20 pounds since this all started. I thought it was just a stomach bug when it started but I think it was the start of this possible dysautonomia / POTS.

Most of the day I am bedridden or sitting down/ in a recliner due to the dizzy feelings / heart rate. Of course, that doesn’t make the dizziness go away either. I’m ****** if I do, ****** if I don’t.

At night I’ve been trying to exercise to make up for it, since I feel slightly better at night. The weird thing is the propanolol has reduced my heart rate from climbing very high but it still pounds and causes my vision to be distorted by the pounding. 

I’ve actually ordered more Licorice Root - this time without the removal of the glycyrrhizin. I’m hoping that will help. I’ve also got some gotu kola on the way to try as well. There is a family history of varicose veins so it might help. 

I’m on blood thinners currently for old / small pulmonary embolism that they found by accident the beginning of this month. They aren’t big enough to cause my symptoms though and it certainly doesn’t explain all my symptoms either. Of course, this is what most doctors are focussing on. 

I haven’t gotten referred for a TTT yet. One night in the ER I did a poor mans TTT with the nurse - she was actually familiar with POTS. That night my resting heart rate was 68, sitting up put it in the 90’s and standing made it spike to 125 immediately. Unfortunately the doctors were focussing on others things and didn’t want to discuss it. So frustrating. The nurses have all been so sympathetic and helpful while the doctors are either unfamiliar or uninterested. 

Thank you for sharing your story / experience. 

[KristaKupcake]

23 minutes ago, StayAtHomeMom said:

My pulmonologist recommended a half a pill of over the counter dramimine to help my dizziness. Not sure why it helped but it did at that time. Check and see if it is safe for you to try. I am sure you are at the point where anything is worth trying. 

I live in the US and even here POTS isn't well known. I had to fight every step of the way to get my diagnosis. Even now when I meet a new doctor or nurse they will ask what it is. 

When my POTS presented it started with a breathing issue (still have 3 years later) and doctors kept saying it was asthma. With perfect PFTs they kept giving me inhalers and breathing treatments. They all made me feel worse. I know now why but at the time I didn't realize it was causing my HR to be worse. 

Things will get better, especially when you find that one doctor. It took me over a year but I found mine and am now doing a lot better. Even with my flares, I am still better than I was 3 years ago. If you don't agree with your doctor, find a new one. They work for you, not the other way around.

Good luck and I hope you feel better soon. 

StayAtHomeMom I have tried Benedryl but it doesn’t seem to work for me :(. I’ve been researching so much to try to help. 

I’m hoping to be referred to a cardiologist here soon. It just never seems to be soon enough. Here sometimes it can take months to years to be referred for tests / specialists. Thankfully I have some connections through working at the hospital for some things but not the right connections for what I need. I haven’t actually been to work since August (on short term disability currently). 

Thank you so much for replying 

[StayAtHomeMom]

9 minutes ago, KristaKupcake said:

StayAtHomeMom I have tried Benedryl but it doesn’t seem to work for me :(. I’ve been researching so much to try to help. 

I’m hoping to be referred to a cardiologist here soon. It just never seems to be soon enough. Here sometimes it can take months to years to be referred for tests / specialists. Thankfully I have some connections through working at the hospital for some things but not the right connections for what I need. I haven’t actually been to work since August (on short term disability currently). 

Thank you so much for replying 

I meant dramimine, the motion sickness medication. 

[Mbritt724]

I’m so sorry to hear you’re going through all of this, the beginning stages of navigating all the changes can be so overwhelming! I know you mentioned salt and fluid increases already, but two things that I’ve found life changing for both of those things have been the Salt Stick Vitassium pills (got mine on amazon) and Drip Drop brand electrolyte packets (I drink 1-3 a day). Before these things I was already drinking tons of fluids and eating more salt, but both of these brands have a perfect combo of electrolytes & potassium/sodium.

Compression stockings, as mentioned already, are helpful and even just forcing yourself to walk or move around (I know it’s hard when you feel so “yuck” ;-/)...  I also found that sleeping propped up seems to help tremendously. I hope you’re able to get into your next appointments soon for continued testing - I know the waiting can be horrible! 

[Pistol]

Dear @KristaKupcake - I am sorry you are experiencing all of this. I know - as do many others on this forum - how scary this all is, especially when you are first starting out on this journey. Ask your doctor if you could try Antivert ( meclizine ). This was prescribed for me when the dizziness is severe and it helps. I also agree with @Mbritt724 about the compression stockings. And please do try to get up as often as your symptoms allow. One of the most common consequences of these symptoms is that we end up lying down all of the times because it makes the symptoms bearable - but it WILL make them worse. The more we can be upright ( even sitting ) the more it will aide in resuming orthostatic tolerance. When I am bedridden I do leg exercises ( lifting legs, bike riding movements, touching the right knee to the left elbow and vice-versa ….) and I try to sit up and lift 1 lb weights in all directions, you can use water bottles if you have no weights. All these exercises are easy to do but are very effective for your circulation. --- I wish you only the best, be well!!!!

[KristaKupcake]

9 hours ago, Pistol said:

Dear @KristaKupcake - I am sorry you are experiencing all of this. I know - as do many others on this forum - how scary this all is, especially when you are first starting out on this journey. Ask your doctor if you could try Antivert ( meclizine ). This was prescribed for me when the dizziness is severe and it helps. I also agree with @Mbritt724 about the compression stockings. And please do try to get up as often as your symptoms allow. One of the most common consequences of these symptoms is that we end up lying down all of the times because it makes the symptoms bearable - but it WILL make them worse. The more we can be upright ( even sitting ) the more it will aide in resuming orthostatic tolerance. When I am bedridden I do leg exercises ( lifting legs, bike riding movements, touching the right knee to the left elbow and vice-versa ….) and I try to sit up and lift 1 lb weights in all directions, you can use water bottles if you have no weights. All these exercises are easy to do but are very effective for your circulation. --- I wish you only the best, be well!!!!

Thank you so much for the suggestions! I will look into the medicine. 

 

[KristaKupcake]

18 hours ago, Mbritt724 said:

I’m so sorry to hear you’re going through all of this, the beginning stages of navigating all the changes can be so overwhelming! I know you mentioned salt and fluid increases already, but two things that I’ve found life changing for both of those things have been the Salt Stick Vitassium pills (got mine on amazon) and Drip Drop brand electrolyte packets (I drink 1-3 a day). Before these things I was already drinking tons of fluids and eating more salt, but both of these brands have a perfect combo of electrolytes & potassium/sodium.

Compression stockings, as mentioned already, are helpful and even just forcing yourself to walk or move around (I know it’s hard when you feel so “yuck” ;-/)...  I also found that sleeping propped up seems to help tremendously. I hope you’re able to get into your next appointments soon for continued testing - I know the waiting can be horrible! 

Thank you so much for the suggestions. I actually ordered the Salt Stick chews - they should arrive tomorrow so I can try them out along with the gotu kola and Licorice pills. 

Today I actually have been up and around more than typically. I just get the bad dizziness after I am at rest / sitting. I have to distract myself with my phone until the dizziness / heart beat settles down. 

Still drinking lots lots of fluids and trying to eat more, though I struggled with loose stools today too (TMI I know). The headache is still with me today as well, despite all the fluids. I took 2 500 mg Tylenol yesterday and it didn’t touch the headache. No rain or low pressure either so I’m not sure why I’m having these headaches.

I’ve been noticing that as soon as I wake up in the morning I have the intense urge to pee and I get shaky after I’ve been upright. Not sure if that is from excess adrenaline or what. My heart rate usually is elevated once I’ve woken up Too especially trying to get upright/even sitting. 

The daily struggles continue...

[bombsh3ll]

20 hours ago, KristaKupcake said:

I took 2 500 mg Tylenol yesterday and it didn’t touch the headache. No rain or low pressure either so I’m not sure why I’m having these headaches.

I’ve been noticing that as soon as I wake up in the morning I have the intense urge to pee and I get shaky after I’ve been upright. Not sure if that is from excess adrenaline or what. My heart rate usually is elevated once I’ve woken up Too especially trying to get upright/even sitting. 

Same here! I find co-codamol more effective for the headaches - it can be constipating though. It is a combination of codeine and paracetamol, not sure if there is an equivalent where you are?

I mix up a litre of electrolyte drink to keep beside my bed and chug when I wake up, before very slowly working myself into a sitting upright position. It might help. I think the excess adrenaline does increase fluid loss through urination. It can be a vicious cycle - low blood volume - high adrenaline - more vasoconstriction and pressure diuresis - even lower blood volume. If only we could find a way to break the cycle!

B x