Please help me solve this puzzle

[Heartbroken]

Some times after breakfast, I get lightheaded, very weak, craving sweets, weird feeling in my gut and hungry for air, but when I check my blood pressure, heart rate and glucose level, they will be close to normal. I asked my doctor he said it is anxiety! I have POTS, CFS, SVT, Hypothyroid (I take pills), MVP and Migraine.

Any input much appreciated.

 

 

[Delta]

 @Heartbroken Hi, HB!

Sorry to hear you are dealing with this carp . . . I have experienced some of it so will try to hopefully shed some light on it.  Before I was diagnosed and taking meds (four lovely months last year), I would sometimes get lightheaded after eating, and even tachycardic.  My understanding is that this happens after eating especially a heavy meal, because more blood is rushing to your stomach to help it do its job and away from your brain=lightheadedness, and our blood flow is already compromised.  I also noticed that sometimes my blood pressure would go down in those cases.

In my case, sometimes when this happened it was the lead-in to a period of gastroparesis, during which I could only drink (I drank Ensure, Gatorade, Pedialyte and water) and eat teeny tiny bits of food (I was buying baby food so I could at least have balanced meals!).  Two distinct episodes lasted about two weeks and I lost ten lbs. each time.  Hopefully you will not have to deal with that.

You mentioned "weird feeling in your gut" - I had so many different ones of those I don't know where to begin!  I had morning nausea every morning, diarrhea, and even feelings as if my stomach were palpitating like my heart after I ate!

Re: the craving sweets but having normal blood sugar - I had this too, also feeling jittery as if my blood sugar were low.  I would check my blood sugar and it was always normal.  This was a mystery to me, too, but I read an interesting theory somewhere (maybe on here?) where someone guessed that because of the poor blood flow to the brain and other places POTSies often have, the sugar in your blood isn't getting to those places, either, which could account for feeling jittery and "low".  I don't know if that is true, but it makes sense to me!  I still get this feeling sometimes, but not to the degree I did before.

I hope this helps put your mind at ease and that your symptoms will improve soon - try not to be too obvious rolling your eyes when the doc says it's "anxiety".  Are you on any meds for POTS specifically? 

[Heartbroken]

Thank you so much Delta for your valuable reply, time and energy, I really appreciate it.

That symptom you mentioned ( stomach is palpitating like my heart), I experience it many times especially at night, but I never dared to tell any doctor fearing to be labeled by them as it is all in my head.

I have tried tens of meds for POTS, they did not work or they made me worse. I take Atenolol only.

Thanks a gain. 

[Delta]

I had a couple of symptoms like that myself - ones I did not care to relate to any of the docs I saw!  Mind you, I was describing quite a few symptoms to them, but a couple of them were just too weird to describe!  Re: the Atenolol you're taking - my understanding is that it is a "selective" beta blocker, which means it mostly affects the heart.  You mentioned that you've tried a lot of different meds - have you tried a "non-selective" beta blocker?  Non-selective beta blockers affect not only your heart, but also blood vessels, lungs, GI system, etc.   Basically all of the autonomic nervous system and not just the heart.  The beta blocker I take is called Propranolol, and it's a non-selective one.  I started with a dose even lower than the one the doc first recommended, after discussing with him, because I wanted to see how it would work and I'm leery of side effects; it's been ten months and so far I'm still on that dose.

Another thing that I think has helped me - and I thank the person on here who gave me this advice sometime last year - is to take my BB *before* I get up and start my day.  I've played around a little with how much time, and what seems to work the best is if I get it on board a couple of hours before I actually get up for the day.  So if I'm getting up at 6:00 A.M. or thereabouts, I take it around 4:00 A.M. or as close to that as I can get - I don't set a clock or anything because I'm a light sleeper; I just look at the clock when I roll over in bed and if it's about that time, the pill and glass of water are waiting on the table beside the bed.

Sorry if this is too long!  Just wanted to share some of my own experience in case it might be helpful.  It's hard to tell, because everyone is truly so different!  GOOD LUCK, hang in there and I hope your symptoms subside soon!!

 

[yogini]

As others mentioned eating can trigger dysautonomia symptoms.  You can have symptoms even when your vitals are fine.  Also you could be intolerant to some of the foods you are eating.  It sometimes helps to keep a diary of what you are eating, your vitals and when you experience symptoms.  I aI eatlso get the sugar cravings and my energy drops, though I am not diabetic.  I always thought it is because I eat too many carbs so my body is "addicted"

[Heartbroken]

Thanks yogini. I have been like that for a very long time that I can't even remember. Ten years? Twenty? I really don't remember. The problem is no matter what I eat, same thing happens to me and always in the morning. I am not diabetic either. 

Appreciate your reply.

[Pistol]

https://www.diabetes.co.uk/reactive-hypoglycemia.html

Dear @Heartbroken - this article explains reactive hypoglycemia, which I have. In the absence of diabetes it can be caused by dysautonomia ( which in my case it is ). Noteworthy is the fact that you can have hypoglycemic symptoms WITHOUT having a low blood sugar ( as explained in this article ). 

I have to be very careful what I eat in the morning. If I eat something with concentrated sugars ( i.e. pancakes ) after about 1 hour or so I become severely hypoglycemic with all the symptoms and I have to eat easily absorbed sugars ( juice or grapes ) to bring the sugar up rapidly and a protein ( like cheese ) to keep the sugar up. I had a 3 hour glucose tolerance test done years ago that showed my sugar dropped to 59 after ingesting the syrup - but I did not even have symptoms!!! 

Try to avoid high sugar/ high carbs for breakfast. I have toast and fruit or unsweetened oatmeal or just eggs for breakfast and this works for me. I avoid all concentrated sweets all day, I don't even crave them. This is how I minimize the hypoglycemic attacks. 

[Heartbroken]

Thanks Pistol. Right now my Dr. had given me a glucose monitor for a month to see how low my blood sugar will drop, but the problem is I experience terrible symptoms of Hypoglycemia while my blood sugar would be in the 80s. The only sugar I take is carbohydrates, fruits  and from milk, I never eat sugar in it's simple form. I asked my Dr. to order glucose tolerance for me but he did not. I don't know how to convince him that I have a real and big problem. It is been 20 years that I suffer from chronic migraine and he had never referred me to a neurologist, he or his partners prescribe pain killers only. My choices of doctors are extremely limited due to the type of insurance I have and also my tight budget.   

I will try not to eat carbohydrates from now on especially in the morning.

Heartfelt thanks.

[Pistol]

Dear @Heartbroken - from what you are saying here and in another post of yours it sounds as if you need a second opinion. Despite insurance - it is your RIGHT to be seen by another physician from another group if you are not getting the treatment or testing that you need. Your insurance has case workers that are specialized in this - call your insurance and ask to talk to a case manager - or if you prefer you can explain your case to whoever answers the phone and tell them you need a second opinion from another doctor. They have to refer you to another in-network physician to be seen. Good luck!!!!!! (P.S. - this is if you are in the USA - I do not know about other countries ). 

[Heartbroken]

Dear Pistol,

Yes I am in Colorado and have Tricare. The last time I asked for a second opinion, the case manager in my doctor's office was so rude, she did not let me finish my concern. She shuffled me back to my Dr. 

With this insurance, even if the second opinion get approved, it has to be through my primary care Dr.

I am in a no win situation. Thank you a gain.

[bombsh3ll]

Just wanted to chime in and say I too experience severe lightheadedness (although mine is constant just to greater or lesser degrees) with completely normal HR, BP, O2 and blood glucose. 

As mentioned above, it is blood flow to the brain that counts, which cannot be measured peripherally. Also normal heart rate and BP are not proof of a normal cardiac output - your stroke volume could be very low and your arterial resistance high, as I believe is the case with me. 

I would definitely keep trying with your doctors, but I just wanted to let you know your experience can and does happen and there is an explanation for it.

B xxx

[bombsh3ll]

PS, I also recently submitted a question to dinet's newsletter along these lines asking the dysautonomia specialists to clarify the issue of normal peripheral measurements not correlating with cardiac output or cerebral blood flow. I have a medical background and am pretty clear about the physiology, but it would be nice to have a neat explanation when many of us are blown off by doctors because our vitals/blood glucose are normal.

I don't know whether my question will be chosen but if it is you might find it interesting. 

B xxx

[Heartbroken]

Thanks bombsh3II for your input. Yes it is very frustrating when we feel (faint, woozy, weak, dizzy and lightheaded) not (vertigo) but our vitals betray us, especially at our doctor's. 

 

[Heartbroken]

Dear Delta,

I was on Propranolol for more than 20 years, but for some reason it lost its effect, that is why doctors switched me to Atenolol. The other thing you mentioned (taking your Propranolol first in the morning) will not work with me, because my lowest BP and HR are in the morning.

Thanks for your sincere reply.

[gackedo]

I hate that low blood sugar feeling. My cardiologist said the jittery feelings and sweats I was experiencing was an adrenaline surge from being upright. But I started checking my sugars and they where anywhere from 39-45!  And they happen so quick.  Pretty scarey  

@Heartbroken-I’m guessing you are on Tricare Prime. If you can switch to Tricare Standard and buy a secondary insurance, the cost is about the same but then you are not required to get referrals from your PCP.  You can refer yourself.  Plus more civilian doctors take Tricare Standard than tricare Prime  

 

[Pistol]

@gackedo - I can tell the difference between adrenaline surges and hypoglycemia. A surge gives me tremors, chills, tachycardia, nervousness … hypoglycemia gives me shakes but also extreme sweating, weakness, hunger and drowsiness. The sweating and the weakness are the most different symptoms and of course the fact that the symptoms disappear once I eat. 

[Heartbroken]

Thank you gackedo and Pistol for both of you.  It is so hard to have this invisible debilitating illness.

[Help4Me]

I too have this reaction and palpatations in my upper left side...I was DX with pancreatitis ...and many of us with pancreatitis have that throbbing ..but now I am wondering if it could be something else....I also have MAST CELL ACTIVATION which goes hand in hand with POTS>.....you may also have that .  In my opinion symptoms that doctors call anxiety are really something malfuntioning in our bodies....hormones, GI, etc etc....sorry you went through that.

[Jessica_]

You sound just like me! I have SVT (which caused my pots) and I’m hypothyroid too and I also suffer from migraines. The only thing that was abnormal with my labs the day the SVT started my pots was my magnesium was low and so was my potassium. Now I take magnesium supplements everyday and eat bananas regularly.  The magnesium helps with the migraines too.  I had a heart ablation to fix the SVT and I’m so thankful for it. I feel soooo much better now than when this first started 2 1/2 years ago. Hang in there!! You are not alone. 

[Jojomar]

Hi Jessica,  very interested to hear about your heart ablation. 

My 15yr old daughters cardiologists has offered Sinus node ablation for her

She is in bradycardia at times as she has 1st and 2nd Degree heart block but also has hEDS and POTS so has inappropriate sinus tachycardia aswell.  It is the inappropriate sinus tachycardia that causes all her problems.

Really interested to hear about uour experience as we are still wondering if this is rhe best option for our daughter.  Thanks

[Pistol]

@Jojomar - I have found in the past through research that Sinus node ablation is NOT recommended for either IST nor POTS. Here is an article about it:

http://electrophysiology.onlinejacc.org/content/early/2016/12/12/j.jacep.2016.09.014

In this article ( which is very long and in medical terms ) it describes a study that was done on this subject and the conclusion of the study states: 

 

Conclusions

Procedural intervention is reserved for severe refractory cases of IST. The results of the present study indicate that IST ablation/modification achieves acute success in the vast majority of patients. However, on long-term follow-up, successful symptomatic relief drops substantially with a corresponding high recurrence rate. Complications are fairly common and diverse.

 

[bombsh3ll]

12 hours ago, Jojomar said:

She is in bradycardia at times as she has 1st and 2nd Degree heart block but also has hEDS and POTS so has inappropriate sinus tachycardia aswell.  It is the inappropriate sinus tachycardia that causes all her problems.

I also would be very wary about an ablation. Has a pacemaker ever been discussed for the heart block/brady? 

That would not fix the tachycardia, but I just wanted to clarify what you said about her having POTS so has inappropriate tachycardia as well. Whilst a person can have both IST and POTS, most people with POTS do not have IST. The tachycardia in POTS is often (but not always) compensatory for low stroke volume, & is an appropriate physiological response to a problem further upstream. 

B xxx