Dr. Abdallah!

[julieph85]

I had my appt. yesterday. It was great! Here is my opinion on him and what he said:

1. Negatives: 3 hour wait just to see him! It was crazy, but ended up being worth it. He doesn't talk causes, only treatments.

2.Positives: He is extremely kind, patient, listens, and understands the mechanisms of POTS better than a lot of others. He takes the time to make sure you understand why you are having symptoms.

What he told me- my biggest problem is a horrible catechlamine reaction after eating carbohydrates. I have seen so many doctors over that last 2 years for this. No one has ever had any idea what it was, even at Mayo clinic. He knew immeadiately what this was, and told me has a few pots patients that have this exact symptom. The cause- Insulin. I have known all along insulin was somehow involved in this reaction, and my pots in general, but I have never been able to find a doctor that understood that. I didn't even have to mention insulin to Dr. A, he knew it already. He feels it is a major contributing factor to my Pots in general. He explained that insulin is a very potent vasodialator- especially in the gut area. My body is producing the palps and cold extremities after eating carbs to couneract the vasodialation. This is also why I feel so much better when i'm hungry. I have a 20 bpm drop in heart rate when i haven't eaten in hours and almost no orthostatic symptoms. Explanation- no insulin. This makes 100% perfect sense for my symptomology. He says he gives Octreotide to his patients with this and it improves their pots significantly. Unfortunately he could not give me an explanation of why my body is so sensitive to the dialating effects of insulin, but he feels that it is a huge trigger for POTS in me, and several other patients he has. He also demonstrated that i'm constantly vasodialted, and this is why i'm hyperandrenergic. He did the same example as he did to PuppyLove- had me stand and pool for about 3 minutes and then had me lift one arm above my head and then compare the two hands- WOW, it is crazy how much blood pools in my hands! This is Dr. A's explanation of hyperandrenergic pots- Caution- he is a believer that POTS is a sydrome, not a disease in and of it itself, and that each person has a different underlying cause. So, this explanation will not apply to everyone. He said that in my case, and several other of his patients, we are dialating way too much, particulary in the gut. This is causing excess sympathetic compensation. In fact, those of us with orthostatic hypertension, are OVER compensating and this is causing the shortness of breath, dizziness, and tachy. The reason we feel better at night is because there are several hormones in the body that increase vasodialtion and they are all very potent in the morning and afternoon and are greatly reduced at night- examples- insulin, growth hormone, cortisol. We are too dialated already, so any additional dialation by a normal stimulus make us feel horrible- examples- exercise, heat, standing, eating carbs, etc. He also doesn't believe in essential hypovolemia. He explained it to me this way- if you have a cup full of fluid and you expand the sides to make the cup wider, what happens to the level of fluid in the cup? It goes down. It is actually the same amount of fluid but appears to be less to the cup. Basically, our bodies think we are hypovolemic but it isn't essential hypovolemia. What happens when your body thinks your hypovolemic- increases thirst via ANG2. I asked him what the cause of this excessive dialation is, since that seems to be the underlying cause of all the excess sympathetic activation. That is the peice he doesn't know and he would not elaborate on theories because he said if you give a cause prematurely, it closes your mind to other options, and what if your wrong? He says right now researchers need to have an open mind to all possible causes. I love that! I also asked him why me, and several others, can't tolerate beta blockers (this is despite every pots doctor i've seen trying to force them on me). He said he completely understands why I can't tolerate them, and in fact, their use is totally counter-intuitive. He said since the tachy is compensating for the dialation, if you reduce it, your going to make the cerebral hypoprofusion WORSE. They only treat the sympathetic activation, which is our body fighting desperately to get blood to our head, so taking a beta blocker is fighting our own natural defense mechanism. This is exactly how i've felt all along! His take on treatment is- constrict the vessels and it will reduced the sympathetic overdrive.

Overall my appt was great, and in my opionin, I feel he understands the mechansims of Pots much better than a lot of other doctors i've seen. I really have hope i'm going to get help from him!

[sue1234]

Wow, I have been stating this same exact scenario and theory for the last year! I found posts of mine saying that insulin is a potent vasodilator and it causes pooling. I have been having "hot flushes" that vasodilate now for a couple of years, and was finally matching them to possible excess insulin, so thus the trip to Mayo to have my insulin addressed to see if I can fix my POTS!! How timely that you have your doctor say this. I'll post an interesting article I found from last year that addresses insulin/vasodilation/ANP:

http://forums.dinet.org/index.php?/topic/18137-hypoglycemia-incr-anf-decr-vasopressin/page__hl__insulin__fromsearch__1

So, have you ever had your insulin levels tested after eating? I would think even though ocreotide helps with symptoms, did he say he was going to see why you might have higher insulin levels?

The only thing I disagree with your doctor about is about the various hormones that are higher during the day and lower at night. Growth hormone, I believe, is higher at night.

If you read my thread "All about endocrine..." from two days ago, I posted about my odd cortisol levels, etc. The hormones he mentioned are all the counterregulatory hormones that come into play after a sugar low. FOR ME, that happens daily, so they are pretty active. Maybe that's why alot of us have high cortisol, low aldosterone, etc. I would love for more people to discuss on the endocrine issue thread.

[lalalisa]

Julie.

Thanks for your thorough post about your experience. That is really interesting and I'm so glad he was able to help make sense of things for you. I really hope his suggestions are really helpful for you.

Thanks again,

Lisa

[julieph85]

Hi sue, in my case I don't think the problem is too much insulin, but rather my vessels are too sensitive to normal amounts of it. I think if my insulin was too high I would be experiencing hypoglycemia, and I don't ever have that. I think the underlying cause of my pots lies within my vessels response to vasodilation. For some reason my vessels seem to want to stay open, so when I'm exposed to normal amount of vasodilation from things like insulin, my body has an even harder time maintaining blood pressure, so on comes the sympathetic overactivation. Dr A said he thought I was too vagal- like over active vagus nerve, and my SNS is trying to desperately compensate. I hope that's not true because that sounds really complicated to fix. I have a feeling the cause is going to come out to somehow be related to eNOS.

[puppylove]

Yay! I'm so happy he helped you too! The wait is always unbelievably long but worth it in the end.

[kclynn]

Did he recommend a low carb type diet? Does taking something like Metformin make sense? My son has his worse symptoms often with 5 to 30 minutes after eating, usually nausea,jerks, chills and even total weakness. Happens other times but pretty consistent following eating.

Way back before his symptoms were full blown, mostly migraines and fatigue, he was slightly overweight (95th percentile) and his insulin was elevated glucose was fine. Lost a little weight, glucose fine, insulin fine. Don't know if there is anything there that has to do with current situation.

[MomtoGiuliana]

Great that you can begin to make sense of what is going on for you. I think I have the same problem--I have the exact same symptoms after eating carbs. For years I ate very small protein only breakfasts b/c otherwise I could be disabled by the increase in symptoms after eating. For me, this has greatly improved on its own over the years. But I still have this to some degree and can get flare ups. So strange. It would really be wonderful to understand it completely.

I had all kinds of tests on my blood glucose and everything was always in the very normal range. So I also do not think I have an insulin production problem, but clearly something is going wrong!

[akavella]

very interesting! glad you are happy with him. keep us updated!! what is his tx plan with you besides the ocreotide.

[HopeSprings]

Fascinating! Great info that ties a lot of the pieces together. Only thing I don't understand is why insulin levels would be low then for us. Maybe it doesn't matter the level, but like you said, our bodies reaction to it. I strongly believe vasodilation and pooling are major issues here, but why then wouldn't Midodrine work like a charm? I reacted terribly to it. So do you feel like you're on the right track? What's his plan for you?

[DoozlyGirl]

Julie,

Thanks so much for sharing this information, as it fills in some of the missing pieces in my journey as well. I have documented elevated insulin levels and plummeting sugars, but not absolute hypoglycemia. High carbs are an issue for me too, and am about to revisit allergies and food intolerances to see if wheat and gluten are triggers. Will keep carb levels in mind.

Has anyone figured out what constitues high carb for them? Months ago, I realized that I am much more sensitive than the general carb guidelines for diabetics. I do ok with about 15 g (one piece of bread) per meal, and if good for a few days, can sneak in a extra 15g. Anything over that and I pay the price later.

Thanks, Lyn

[Lemons2lemonade]

This sounds spot on. Is this the guy in the dc area? Also, I was literally just talking to Issie yesterday about the beta blocker thing pretty much verbatim. The insulin component is interesting and I have considered that as well. Maybe this accounts for the high angiotensin ii- to balance it out, leading to aldosterone etc. When this started I thought for sure I was diabetic, and I even had an attack during a gtt, so there's that for you. My glucose was fine. If you've ever seen a diabetic attack it is so similar its unbelievable, only they continue to drop until they fall into seizure, while we use the tachy to come back. This would also explain the detrimental affects of alcohol, not only as a vasodilator and urination trigger but also as an insulin effector, which would amplify this process. When I got sick initially, I would have one cocktail, and per 6 times- large voids no joke.

[Clairefmartin]

Thank you for posting this! I just got all my neuroendocrine reults back and my insulin was high, they are looking into it more. And I have the SAME issues - my blood feels like it sloshes around my extremities. I raise my hands, they turn white. I let them hand, they are swollen and red. And I have massive reactions to sugar/carbs! And all the symptoms of hyperPOTS, I'm finally getting the standing catecholemine tests done next week.

I may have missed it, but what were his treatment suggestions? I'm actually going to print this out, because I really feel with my insulin issues, it is relevant. Unfortunately, the doc I saw wants to treat with BBs. I DO NOT do well with any BBs I've tried before, and don't want to use any more.

Thanks again for posting!!!

Claire

[issie]

Fascinating! Great info that ties a lot of the pieces together. Only thing I don't understand is why insulin levels would be low then for us. Maybe it doesn't matter the level, but like you said, our bodies reaction to it. I strongly believe vasodilation and pooling are major issues here, but why then wouldn't Midodrine work like a charm? I reacted terribly to it. So do you feel like you're on the right track? What's his plan for you?

I find this very interesting. But, like you - I do horrible on midodrine and vasoconstriction. My guess is that some of us may be low flow and we are overly constricted in our veins. Not too lax. For those with low flow - constriction will make things worse. There is still pooling, but it's because the blood isn't flowing properly - because of overconstriction. Just goes to show - how not all are the same. What will work for one will not work for another.

[kluesyk]

I try to eat high protein, low carb diet and feel the best on it. My glucose tolerance test shows I go really high then bottom out with my blood sugars.

Last endo said I had "insulin resistence" and did a trial of Metformin. I took 1/2 dose for 9 days(due to digestive issues it caused) and majorly crashed...ended up in the ER with tachycardia, left side diastolic dysfunction, severe chest pain, shortness of breath and felt like I could not make my legs work.....took 4 weeks for me to drive a car again and regain much function....it was awful, and the worst was the drs said at the ER, "just don't take metformin again". No explaination. My urine PH went high and my GFR function dropped to 50 also.

I am always on the borderline of dehydration and my potassium, sodium, ect is low and it does say on the metformin information not to take it if you have these things.....gee you would have thought the dr would have told me.

That is the problem....I have so many things out of balance that to introduce a new drug is very risky for me.

[issie]

Now, whether this would help others or not. I've been considered insulin resistant for over 20 years and have not developed true diabetes - but sometimes higher readings than what's considered normal -and also, do have periods of hypoglycemia. But, my doctor told me to take GTF chromium on a daily basis. It helps to level out your blood sugars. I'm not a heavy carb eater - just naturally. But, if I seem to be having issues - I'll use this morning and night. But, if I'm seeming to do okay - I take one at bedtime - every night. It prevents me from waking up in the middle of the night hungry - like some do. It's worked for me as far as blood sugar issues go. I haven't noticed that it helps with POTS at all though.

Issie

[julieph85]

Hi everyone, the only thing he mentioned to me yesterday was the octreotide. He says he wants to do his own tilt, and than talk meds after that. I'm not keen on trying the midodrine because of the orthostatic hypertension. Dr G in Az was worried it would cause too high BP. I'm hoping he will let me trial an SSRI, since that will kill two birds- it vasoconstricts and lowers sympathetic activity. If that doesn't help the insulin issue, then I would also try the octreotide. CFMartin- I have hyper pots and I do not have high standing norepinephrine, so if that comes back normal for you, that doesn't mean you aren't hyper pots. From what I understand, you know your hyper pots if you experience orthostatic hypertension instead of hypotension.Lemons- yes he is right outside DC. I will post his treatment options next week at my follow up!

[issie]

I'm really excited that answers are starting to come through for you.

Issie

[juliegee]

I have heard great things about Dr. "A."

Very cool to be getting to the root of your issues So many of us deal with hypoglycemia....does this help explain THAT? I also eat high protein- for that very reason.

Hope this leads to a better treatment plan.

Julie

[Katybug]

Wow, Julie!

I am so glad for you that you finally found a doc that is really tuned in to you! His explanations make so much sense for what you have been describing as your symptoms. I really hope the treatment plan comes together and you can find some relief!

Keep us updated,

Katie

[issie]

I have hyper pots and I do not have high standing norepinephrine, you know your hyper pots if you experience orthostatic hypertension instead of hypotension.

This may be the difference. I'm hyperPOTS but with High Noriepi levels. I have more high bp's and high NE.

[HopeSprings]

I have hyper pots and I do not have high standing norepinephrine, you know your hyper pots if you experience orthostatic hypertension instead of hypotension.

This may be the difference. I'm hyperPOTS but with High Noriepi levels. I have more high bp's and high NE.

We seem to be all over the map. I have high standing norepi, but never high BP. My neuro said high standing norepi can be seen in POTS in general, doesn't necessarily mean hyper POTS. It's the high BP that's the real clue, but some also have high norepi.

Good luck Julie - I really hope he can help. Keep us posted.

[comfortzone]

Thanks to all for their experiences shared here. I know I pool - I have a weird flush/rush in my belly/chest every single morning when my musculature begins to move - same with I'm laying down for say over an hour & I sit up afterward. I have OI - and crazy very labile b/p. Recently I had a weight gain and rather than labile bp it went to full on hypertension. I lost the weight gain of 13 pounds and now I am labile again. My meds now are Inderal (propranolol) and clonidine. Without them I am tachy and hypertensive both. Today the meds knocked my b/p very low and I lost about 3 hours of the day - very symptomatic with 90/60 -- hr of 60. As I eat better and the pounds reduce - I'm back to my old tricks - labile to beat the band. Which limits meds to help me - and with htn I don't get allowed a lot of meds in the realm of 'feel better's' like the ssri's etc.. I gained the weight on guanfacine and had to stop... mestinon didn't help me either.. Bystolic just seemed to quit working. I do take a diuretic too - but based on today's episode of hypotension - I'll stop it.

I will have a vein procedure in my legs - some say that OI can actually be helped with this a little bit ~ I'm not holding my breath - it's for preventing stasis or pooling ulcers - incompetent veins - common in EDS'ers - but lots of people inherit these gnarly things.

I thought I had orthostatic hypertension - I shoot way up -- with a sit to stand - Dr. G the other day took my b/p after I sat up and diastolic was 107, face flushed etc.. In my case I have rapidly rising cathecholamines with position change - but the overall numbers aren't out of the ball park - more about how quickly they shoot up - which may contribute to the labile b/p. Unmedicated my avg. heart rate is 100 with lots of pvc's and PAT - but the Inderal knocked that out. Clonidine helps the hypertension as well - but if I keep dipping low as I lose weight - I'll have to tinker and taper as they say.

The insulin thing is fascinating. I have had fastings as high as 119 --- and HbA1C before I lost the weight recently was 6.4 -- the worst it's ever been. No one has claimed full on diabetes yet though. I do have small fiber neuropathy from likely having a hbA1c of around 6 for 12 years now. When I had the 2 hour GTT - I had a fasting of 99.... drank the stuff - and 2 hours later I was 99 again. Which is just bizarre - wouldn't it have been like 140 plus? So I guess I must have too much insulin - or it did an extra good job that day?

I was wondering if you could explain to me what lab test options are available for a curious insulin episode like that -- and also does Dr. G have any ideas on pooling and insulin -- as a hookup as well? Has anyone asked him about this? Is it really a binder and compression hose alone that can effect anything?

The way I lost those 13 pounds was to stop carbs as in the induction phase of Atkins... I felt sick at first - but then felt better.... I think I may repeat a couple weeks of low carb to almost no carb again - and try my eliptical for just 15 min to 30 min. or so a day ... To keep the blood pumping somehow... Anything more than that - I get sick with pain and bedbound. For some reason cardio done lightly is okay with my symptoms - but any type of strength training and I'm totally incapcitated with pain.

I want to get healthy - and it seems it's always 1 step forward - 2 steps back - so I don't get anywhere - but I'll keep up the low carb - which hopefully will keep insulin in check - which will maybe keep pooling a bit more in check - ? So much to learn!

[ramakentesh]

Yeah thats pretty much what all of the recent research is saying - tachycardia is a response to thoratic hypovolumia (usually redistributive rather than absolute hypovolumia).

Ang II is partially responsible for vasoconstriction in the stomach. There are literally 30 or 40 known substances in the stomach vascular system that could be contributing to the vasodilation in that area. Nitric oxide and hydrogen sulfide have been implicated. But its early days.

Most postural hypertension is a compensatory mechanism.

Midodrine is an alpha 1 only - peripheral vasoconstrictor - whereas the stomnach relies on alpha 1, alpha 2 and ang II for vasoconstriction making something like ocreotide LAR a good option, although the side effect can be gallbladder pain I think what we are seeing is that most patients or at least a lot have pooling that is more specific to the stomach than to the hands and feet. Hands and feet = midodrine, stomach might require something else like ocreotide.

the doctor sounds pretty good. Better than some. the insulin stuff is all accurate. Also has effects on NET reuptake activity

the hand thing is interesting. Do it on people without POTS.

[jackiemxoxo]

Julie- thanks for writing such a detailed post, I feel like my symptoms were very similar to yours when I first got sick. How did your symptoms present?

I had also contracted c.diff at the time though so the pooling in my gut was so severe that it was making me faint. Luckily, the doctor put me on ocreotide (Sandostatin) and I could literally feel the blood rush out from my stomach to my lungs and head. I have gotten much better that I do not need it anymore and eventually I could not feel a difference but hopefully it will work for you.

[julieph85]

Got my treatment plan- he wants me to try midodrine but I told him I'm scared because of the sympathetic activation. He compromised and gave me Paxil to try for a month an then add midodrine. The best was he ended the appt with a big hug. It made my day to have a doctor be that caring and understanding. What a great doctor!