Possible Hope For Some Newbies

[the4richards]

This is for the newbies looking for answers...and hope.

My story

In early March of 2010 I had the following symptoms that had me calling 911: blurred vision, pain in my left arm, dizziness, nausea, migraine, sweating, blood pressure about 195/110, hr 185 when standing, near syncope.

After 3 trips to the ER, with initial prognosis of TIA(mini-stroke), NCS, and finally POTS, I was put on high dose of beta blocker with a side of Zanax when needed. I had severe anxiety and shakes which I had NEVER had before. Final diagnosis NCS(positive TTT) and POTS, negative TIA - my heart is strong.

A couple of other things that had recently popped up was I had cold urticaria (hives if I was exposed to cold), and my sugar levels were a little high (in the pre-diabetes stage).

I had to drastically change my eating habits because of the nausea. I ended up eating frequent small meals on a lower carb diet. I lost 25+ lbs and my sugar levels were now normal (I had access to a glucose meter).

I am now on about 5 mg bb (atenalol) 2x a day, I no longer have ANY disabaling symptoms. The only thing I do have is a 15-30 pt swing in my hr when standing, but it is managable because my supine hr is 55. I can do anything I could do before. My cardiologist is going to start taking me off the bb.

The doctors don't know what caused my symptoms...a virus I had a couple of weeks before maybe? A reaction to the cholesterol meds I recently started taking? I STRONGLY believe it was diabetes related. My sugar levels made me sensitive to EVERYTHING. Once I got those in control (and they were never diabetic levels) everything else started to get better.

This web site http://care.diabetesjournals.org/content/26/5/1553.full#sec-54 gave me insite that diabetes can cause the cardiovascular, metabolic and sudomotor problems I was having. You do NOT have to be full blown diabetic. Some people's bodies just can't handle the high sugar levels and react like they've had untreated diabetes for years.

So bottom line...if you suspect diabetes at all...even pre-diabetes...cutting carbs could be a miracle for you.

FYI...I almost didn't post this because I know the majority of you on this site will have your condition forever. I do not in ANY way want to belittle your pain and struggling to have a quality life. I was just one of the unlucky lucky ones to have the condition that went away (and I pray stays away) and hope I might be able to help at least one person in a similar situation.

God Bless You All and may His healing hands rest upon you.

Looking4Answers

[lieze]

Thank you for your story.

I have the high blood sugar readings too and I think maybe my pregnancies brought this on.

I had large for gestational age babies and noticed fuzzy head a couple times late in pregnancy.

Also I even after noticed I couldn't tolerate high sugar foods would also give me fuzzy head like lemon meringue pie ugh at work no no! Too much sugar at once.

Also trouble with carbs like spaghetti.

So you think diet can help?

It's something I'm struggling with I don't have a normal appetite and often will have an episode after taking in food.

I have times I feel almost there and then symptoms start again.

Diet is one thing I don't have worked out and is a problem for me because I don't have the free access to just go to the store and buy foods I would like.

Some of my episodes also feel like there is blood sugar involved mostly dropping and my mom who is diabetic relates very much to the feelings I'm getting.

My hgbAIC did read on the borderline high level when I did have it checked. Although sugars drop for me fast and I seem to need to eat often or get into trouble very quickly. It hits me like a brick wall. That I needed food like 10 minutes ago and it's too late (it feels) as I'm finally getting the signal.

Thanks.

[sue1234]

I'm glad you found something that helps you! I have blood sugar issues, too, but not that I have high, but that they drop low. Since January, I have given up all outward sugars, and eat roughly every two waking hours. It has helped with the low blood sugar symptoms, but has not altered my POTS. I still have all the same POTS symptoms when upright.

When my blood sugar drops, I get an high b/p(mine was 180/110) first thing in the morning, hot!, tachycardia. These of course are POTS symptoms for me, too, but eating got rid of this episode that happened a few years ago, so I knew it was low blood sugar. I just spend my days eating for preventative measures. I have lost 26 lbs. since January.

I have to amend one thing. MOST of my hypoglycemia symptoms are the same as POTS. The one thing that I read in your post that definitely sounds like low blood sugar is how you got the shakes. Shakes and anxiety are my very first clue that I am getting low blood sugar, and it happens pretty fast!

Did they ever test your blood sugar in the ER during the height of your symptoms? What was it?

[the4richards]

sue1234,

I had my sugar levels checked many times in the ER and during my stays there. They hovered around 106 fasting, which is pre-diabetic range. I never had a high reading there (although I was nauseous and couldn't eat) and I have NEVER had a low, although I got hypo "symptoms" regularly when I didn't eat. I insisted on a 3 hr. glucose tolerance test. My 2 hour was 190 (diabetes is 200+, pre is 140-199, normal is 140 and under).

Once I got my sugars under tighter control, my bp went from being high to low. Now it ranges from 110/70 sitting to 90/70 standing. After about 10 minutes the standing bp will bring itself back to normal.

lieze,

Diet definitely helped me. I cut out all sugars, starches and anything white (rice, bread, potatoes). At first when I didn't eat every 2 hours I got hypo symptoms but testing showed sugars were normal. I am still eating 50-120 carbs a day, which is by no means a super low carb diet. I can now eat up to 40 carbs a meal and keep my sugars where I want them.

[dianne.fraser]

Hi. I understand that dysautonomia is a reasonably common complication of poorly controlled blood sugar.

I've also found a lot of relief in a low carb diet - my fatigue levels are much, much lower and my overall functioning better as long as I restrict the total amount of carbs I eat at any one sitting.

I'm so glad you found your answers so quickly and that you've regained your functioning.

With best wishes

Dianne