Dizziness Remains.....

[MeganMN]

Sorry for yet another post, but I have no where else to get info!  I have been on Propranolol now for over a month- dose depends on symptoms but it is usually 10mg in the AM, 10mg again in the afternoon, and 20mg at bedtime.  My heart rate and blood pressure seem to be fairly stable with this dose.  If I do not take enough, my heart rate begins to creep up again.  The problem that I am having now is that no matter what my vitals are, I am still dizzy.  I only feel super dizzy at work (on my feet all day for a 12 hour shift, busy, walking around).   Just checked my vitals and my heart rate was 80 and my BP was 120/78 and I am still feeling super dizzy, with nausea, and getting sweaty/clammy.  I do not know what to do about it because my vitals are normal!  Any thoughts?

[Guest ScottS]

Are you also able to measure your O2 sat levels? The brain is highly sensitive to cellular hypoxia (low oxygen). For me, I can often correlate what dizziness I experience more with my O2 sat level being just a point or two low even when my heart rate and BP are well within the range of normal. I can think of a couple of simple yoga and Qi dynamic tension movements that I regularly do when my own O2 levels are lower than I like. One is a variation on the "hook maneuver" (which Air Force fighter pilots often utilize to help fight off high G forces). The other is a simple yoga (and dancer's) pose. The yoga pose involves little more than crossing one's legs (while standing) and squeezing in via your upper and inner thighs and pelvic core (concentrating the isometric tension on the musculature of the rectum, sex organ and navel, or what people who practice kundalini yoga call "the pelvic triangle or pelvic core"). For more information see: https://www.eurekalert.org/pub_releases/2002-09/aha-lmm082802.php

https://fightersweep.com/1411/agsm/ provides nice overview of the "hook maneuver". When I do (and teach) this pose (as a part of my yoga practice) I'm standing, not sitting. The movement itself is simple enough. Simply rock your pelvis back (drawing the sacrum back) on an inhale and then on the exhale gently rock it forward. When you've reached the high point (of shifting or rocking your pelvis forward), just as you've exhaled the last of the breath, make a concerted effort to go a little further and, at the same time, tense through your pelvic core and push out the very last bit of air remaining in your lungs and say (or make the sound) "humph!" 

[MeganMN]

@ScottS. Vitals are always normal, but I will definitely try the above techniques.  It is the weirdest feeling. Hit me and today at work and felt all pukey and clammy for a minute.  It is almost like being in a boat or something, not vertigo, but off balance and feeling like I might just wobble bobble over.  Sorry, it is hard to explain. It puzzles me because I just do  it understand its origin. I will certainly try what you suggested though! Thanks!

[MeganMN]

After doing so me more research, it sounds like disequilibrium. Now to make it stop!!

[StayAtHomeMom]

So my dizziness is a cycling symptom. In the beginning I had it about 6 months. Anything could set it off. It slowly went away on its own. After 6 months of it mostly gone I had noise sensitivity that would trigger it so I starting taking dramamine (motion sickness medication). 1/2 a pill would usually keep it away. Now (almost 2 years after that) I get it occasionally. Mostly during my period and I go to stand up from laying down. It settles after a few minutes so I mostly just deal with it at this point. 

[Pistol]

@MeganMN - what you describe sounds like presyncope. I also used to work 12 hour shifts and passed out frequently, the dizziness and clamminess you describe sounds like what  I feel like right before I pass out. In the medical community presyncope is considered the same as full syncope. Please inform your prescribing physician - he may want to change your meds. 

[Clb75]

A lot of pots patients experience dizziness while having normal vitals. It’s a mystery! I have dizziness like this too where I’ve been housebound for several years. Sometimes it’s presyncope, sometimes just not enough blood getting to my head but not to the point of passing out. Typically my vitals are normal when this happens. Reclining is the only thing that helps me, but I’m also doing salt, fluid, meds, exercise etc or it would be much worse. It’s hard finding things to help improve symptoms, so keep trying. Hopefully you’ll find something to help improve your symptoms.

[MeganMN]

Thanks everyone. I am waiting for my appointment on January 16th to see the electrophysiologist. No one else has been super helpful. Hoping he will be.  Will keep slogging through. Thankfully I do not work much, only two days a week. It does feel awful though! 

[MomtoGiuliana]

I get this too--normal vitals, yet feel dizzy, sometimes disabling level of dizziness.  I wonder if it has to do with blood pooling...I know I have read that with POTS blood tends to pool below the heart and not enough gets above the heart and thus dizziness, headaches, etc.  And is blood pressure necessarily constant throughout the body--at least in dysautonomia?  Hope you feel better soon.

[MeganMN]

@MomtoGiuliana thanks! I have also been reading up on things and it sounds like although the Beta Blocker is keeping my heart rate lower, I still probably have a lack of blood flow to the brain , which the beta blocker obviously did not fix.  Then, the normal BP is because my body is still trying to get blood up to my brain, so it is compensating. Weird syndrome. So even though vitals are normal, blood is still not getting where it should so it causes symptoms. Sheesh, crazy bodies. 

[Guest ScottS]

16 hours ago, MeganMN said:

@ScottS. Vitals are always normal, but I will definitely try the above techniques.  It is the weirdest feeling. Hit me and today at work and felt all pukey and clammy for a minute.  It is almost like being in a boat or something, not vertigo, but off balance and feeling like I might just wobble bobble over.  Sorry, it is hard to explain. It puzzles me because I just do  it understand its origin. I will certainly try what you suggested though! Thanks!

I, admittedly, have the advantage of a lifetime of yoga and YQi practice behind me. So the movements I suggested come naturally to me. I also have the disadvantage of having to deal with a second form of dysautonomia (as yet unnamed and still mysterious to both me and my Drs.) that affects my vision (and, in fact, is messing with me as I type). Bugger it all! Hang in there. Rest when you can, stay hydrated, tend to your salts and other electrolytes. In addition, exercise when you can and as you are able, sleep well and try to stay on top of your known triggers. And etc. One thing is certain, dysautonomia can be a real creep.

[MeganMN]

@ScottS thanks again.  I am trying to incorporate all of the things that I am learning into my new routine. I think I that the biggest challenge that I face is that I am the wage earner in my family and have three small kids that we are also homeschooling. We live on 40 acres and have to do a ton of physical labor just to get by. I am finding it  increasingly difficult to do the things that I need to do for myself. There are no magic answers to this conundrum, of course, but it is proving to be very difficult. Most days if I can drink enough water, get enough food, and manage to scrape by, it is a win. I am constantly walking uphill it seems.  We will see how this all plays out. I find myself getting depressed, having it put a strain on my relationship with my kids and husband, and affecting my job.  I will take all the tips and tricks that I can get. 

[Pistol]

Hi @MeganMN - I also was the bread-winner of the family. We - like you - live in the country, with many acres to tend to. I also have a teenage daughter. When I became ill with POTS I - after several years of fighting this reality - had to stop working due to my POTS. I also had to learn that gardening ( or any outside work ), hiking, playing with my kid, driving a car etc … ANY activity will make me worse and result in me being bedridden. And yes - I can be extremely symptomatic yet my vital signs are normal. That is one of the reasons many docs do not believe us when we explain how bad we feel - there is nothing there to prove it, or to explain it.  The best advice I can give is this: do not feel like you should do more - because most likely you are already doing too much. POTS puts you into a different category of what is normal - the simplest things can be a major achievement. So please do not compare yourself to what you think you SHOULD be able to do! Listen to your body, find out what you can do and what makes you feel worse and then create a new daily routine. And even that will change every day. In my case I can do laundry, dishes on a good day, cooking ( with restrictions ) and dishes ( in spurts ). Homework and playing games with my family counts as work, since it causes me to be symptomatic. So - if I know my daughter will be home I don't  do a lot of house chores so I can play with her or spend time with her. If I have the day to do what I can then I do chores ( 4 loads of laundry today ). --- I truly feel for you because I can totally imagine how hard it must be for you to try to accomplish all there is on your list. And without sounding discouraging I am telling you: it is not possible. Once you see that you will be able to get a better handle on your POTS life. BE WELL!

[MeganMN]

@Pistol No it is good for me to have the reality check, even if it takes a bit for it to sink in! This past week was pretty terrible for me. Oddly, the last two days have been fantastic and the only thing different is that I was taking Sudafed due to head congestion. I am trying to be more realistic also about the good days and not getting too hopeful that the bad will  it come back.  Still soaking up all the things that you said, but I Do appreciate the honesty and support!  It helps!

 

 

[Pistol]

@MeganMN - you mention you feel better on Sudafed - I wonder if you would benefit from a stimulant then? I suffered from severe weakness and fatigue ( which I minded more than anything ), so my specialist started me on a very low dose of Ritalin. This has been a real help to me - I take it in the morning and until about 11 am I have energy and can do most of the things I want to do in those hours. It is a commonly used medication for POTS and there are articles regarding it ( search methylphenidate in the treatment of POTS, there is a good article by Dr Grubb ). Maybe you want to ask your doctor about this? I had absolutely no side effects from it. Also - my specialist recommended Modafinil but this is not covered by my insurance. --- I am sorry that you are having a difficult time right now. We all have been there! Stay strong, be positive and never give up hoping. I am a pretty severe case of POTS and suffered for 9 years but now am in a tolerable place. Although I was at the end of my wits many time I never gave up hope - and when I was close to it I had people who lifted me back up. 

[bombsh3ll]

Hi Megan,

Sorry you're suffering. I just wanted to add that I'm another with normal (or highish) BP and HR sitting and can feel absolutely awful with lightheadedness and presyncope with normal readings. O2 is also normal. 

The reason, I believe (I am a doctor but no longer working due to POTS) is that superficial readings of pulse and BP tell us nothing about cardiac output (for that you need to know stroke volume which is not easily measured), or cerebral blood flow.

If you want the science - blood pressure is the product of cardiac output and peripheral vascular resistance. Two people could have exactly the same BP and HR, but vastly different cardiac outputs (and therefore cerebral blood flow). Person A could have a high stroke volume and therefore cardiac output, and a low vascular resistance (ie how hard the blood vessels are constricting), whilst person B (like us with dysautonomia) could have a miserably low stroke volume & cardiac output, with a high vascular resistance (cold hands and feet anyone?!)

Unfortunately beta blockers make person B's situation worse in terms of reducing cardiac output further and increasing vascular resistance, although they can make the actual numbers look better. 

I am still looking for the answer myself. Something that helped me greatly but wore off after about a year was licorice root capsules by Swanson - they boost blood volume. 

Best wishes,

B xxx

 

 

[MeganMN]

@bombsh3ll thank you for the post! I always appreciate the science behind things, which is probably one of the many reasons why this whole diagnosis has been frustrating, because there are so.many unknowns!  I used to take deglycyrrhized licorice for reflux and it helped tremendously. Would that be the same formulary that is good for blood volume? If so, I have some in the cabinet.  Too bad they cannot do Echos while standing up, might help sort out some of the stroke volume and cardiac output mysteries! 

It also makes sense that the beta blockers could actually make some symptoms worse. I found that the higher doses of beta blockers were much harder for me to handle. My feet and hands were frozen (more so) and on really bad days when the headaches and dizziness were at their worst, I found that I had absolutely no color in my face at all. My co-workers could actually tell if it was a good day or not based on my color (or lack of)! last week I decided to try to stop down to 10mg Propranolol instead of 20mg at a time.  Since decreasing the doseage, I have actually found my dizziness has almost vanished and my hands and feet are less cold.  Interesting.  thanks for the food for thought!

[bombsh3ll]

Hi Megan,

No it has to be the non DGL licorice, the DGL form has the active ingredient removed. The brand I use is Swanson's, which is sold by various online outlets including Amazon. 

Glad you're feeling better on less propranolol.

B x

[MeganMN]

Thanks for the info! Just got back from the EP. Seemed like a good visit. he agreed with the diagnosis this far and ran a few blood tests. He would like to see me switch from the Propranolol to Corlanor and get a 24 hour Holter, then re-evaluate. Sounds like an okay plan to me. 

[CarolS]

You probably know this already, but if you take something like beta blockers to take down the tachycardia but don't increase blood volume and/or vasoconstriction, you'll probably feel worse. Have you asked about midodrine? 

[MeganMN]

@CarolS  We talked about that when I saw the EP but he seemed to think that it would be of no benefit because my blood pressure is generally normal and higher when standing.  How would the beta blockers make one feel without increasing volume?  I have found that when I take the higher dose of beta blocker, my dizziness is out of control (with normal vitals), but when I drop the dose of beta blocker, I get breakthrough symptoms that are equally as disturbing (lots of tachy and extra beats/ectopy and flushing/sweating/tremors).  I am actually feeling fairly discouraged right now.  I tried to lower the dose of Propranolol as he suggested and had a TON of breakthrough symptoms, but then today, when I tried  to take the higher dose, my heart rate was perfectly normal and felt super dizzy and nauseated all day to the point of ridiculousness.  I am super down.  He will order the event monitor, but unless I stop the beta blocker, he is only going to see totally normal readings.  I do not know what to do.  See a neurologist?  Someone else?  He wants to see me again in 2 months.  I hope I can make it that long because I feel HORRIBLE....

[Stark]

Hi Megan, I assume you are from MN. Have you tried to be seen at Mayo clinic in Rochester? I hear they have good POTS doctors 

[MeganMN]

@Stark thanks! I am in Minnesota and have thought about Mayo but my insurance is pretty wimpy.  I  was going to call and see what if anything they would cover out of network.  It is only about 4 hours from me. Hard to figure out logistics with a 3,5, and 7 year old!  Family vacation to the doctor? HAaha. Looking into it though. Up to this point, everyone (including me) thought the symptoms might resolve but here I am...... 😉

[CarolS]

@MeganMN When a "normal" person stands up, their autonomic nervous system tells the vessels in the legs to constrict so all the blood doesn't end up pulled down to the feet and legs with gravity. If you have dysautonomia/POTS, the vessels aren't getting the message to constrict. So, you stand up, blood drops to the lower half of your body and the heart beats faster and faster trying to keep blood going to the heart and the brain where its vitally necessary. The heart usually can't achieve this no matter how hard it pumps, but it tries and tries. You get dizzy. Some people faint because fainting is the body's way of getting you horizontal and getting blood back to the head and heart. Fainting is the body saving itself from death! 

So, if you take a drug that lowers heart rate but you don't take any other measures then you still have the blood going to the lower half of the body but now the heart isn't even beating hard to keep it going to the head and heart. You'll likely feel worse. You can take a drug like midodrine for vasoconstriction so that when you use the beta blocker to take the HR down you're also helping the blood to stay up where it needs to be by constricting the vessels. Another way to help is to increase blood volume (usually done by drinking at least 2L of water a day and very generous amounts of salt or salt tablets or by taking Florinef) which then means the whole system has more fluid and when blood falls to the feet, there's still enough to go around, so to speak. 

[Pistol]

15 hours ago, CarolS said:

. If you have dysautonomia/POTS, the vessels aren't getting the message to constrict. So, you stand up, blood drops to the lower half of your body and the heart beats faster and faster trying to keep blood going to the heart and the brain where its vitally necessary

In my case - I have hyperadrenergic POTS - in response to blood pooling the ANS dumps out too much Norepinephrine and the blood vessels constrict TOO MUCH resulting in POTS symptoms. In that case medications that vasoconstrict make symptoms worse ( as do compression stockings ), but vasodilators ( contra-indicated for many POTS patients ) improve symptoms.  That is why it is essential to differentiate between the different mechansisms of POTS.