Hi! Checking In-- Gastroparesis? Bp Elevated? Neuropathy?

[westernmass]

Hello everyone

I FINALLY had my appointment with a (FINALLY!) knowledgable, helpful, nice neurologist who treats several POTS patients. After my last experience with a "specialist", I was dubious, but she turned out to be really great. Yay! Finally someone who seems to know at least as much as I do about POTS, if not more (lol), who has a game plan, and who is familiar with the newer research and treatment options. I have some updates/questions, I would really love some help with. She is running some basic blood work, I am monitoring BP/HR for two weeks, and based on that stuff will determine a path of further testing/treatment options (potentially genetic testing for mito diseases, EDS...some other stuff I am brain fogging on).

1. Unfortunately, she confirmed my suspicions about gastroparesis being the root cause of my GI issues. She said she is totally confident I have GP, that the majority of her Dys patients have it, and that it wasn't even worth doing the gastric emptying test (which my GI is reluctant to do) because it is toxic, and to just assume I have it and treat accordingly. This means an even more restricted diet (also dealing with fructose malabsorption, most likely caused by the SIBO I have, both most likely caused by GP).

Questions: I have visited G-Pact, but does anyone have any other good GP resources? Any diet advice? Does anyone know about taking probiotics (it seems that if I have SIBO, adding more bacteria to a slow moving GI system could make it worse?) Does GP get better? What I've read is pretty depressing...

2. I am showing (early) signs of neuropathy in my hands and feet. We are hoping this is caused by vitamin deficiencies/malnutrition again due to the GP (this seems possible; I've noticed lately my skin is dull, have serious bags under my eyes, my nails are brittle and breaking) and if I am low in iron or b12 or something that could cause symptoms of neuropathy, I could supplement and "fix" it.

Questions:Who has experience with this? If this is NOT caused by a deficiency, is this a sign my POTS is progressing?

3. I've noticed since getting on oral birth control back in the early spring, my blood pressure is much higher than it used to be (used to be 90-110/50-75) and I'm seeing a greater range in BPs. I've had everything from around 100/70 to 124/90 (and while in the ER several weeks back due to reaction to antibiotics, clocked in at 155/95!). The high end of this is new to me, should I be concerned about this? Sometimes it drops on standing, but more often it's been raising on standing. My HR seems to be doing whatever it wants, relatively regardless of BP (sometimes it's brady, sometimes it's normal (60-70 for me), sometimes it's high (80-90 for me) while resting, and sometimes it will do the POTS thing and jump 30+ bpm on standing, other times it drops 10+ bpm, other times it stays within 10 bpm.

Questions: Does this seem like "normal" POTSy behavior? I am not monitoring at exactly the same times each day, sometimes it's before/after eating, with compression socks or without, having taken salt/not...could the variations be due to that? What does hyper-POTS look like? Are those BPs and HRs MUCH higher? My HR generally doesn't go extremely high (but does generally jump 30+bpm from my resting).

Thanks everyone, I know this is a ton of update/questions. I really, really appreciate any input.

[Chaos]

Congrats on finding a doc who knows POTS and is up to date and willing to work with you. Sounds like a treasure!

I have been doing some research on my own as far as iron and B12 and it seems like they are finding a lot of us have low levels of B12 and low ferritin levels. But since the lab ranges are so huge these days they don't show up as clinically low and a lot of docs won't address or acknowledge that the low levels could be an issue. I keep reading physician "experts" in the fields tho who say B12 and ferritin levels should be in the high normal ranges for those of us with symptoms. For example one research physician was saying that "B12 levels below 400 could cause neurological symptoms in these types of patients" (us) but none of my treating physicians seem concerned unless the level is flagged by the lab as being low (generally under 180). Since you apparently have a good doc you're working with, hopefully she'll be looking at those numbers more closely.

Don't know a lot about the SIBO but have read some things about it. I think the theory is that if you have overgrowth of some bacteria, by introducing other kinds thru the probiotics, it's supposed to help balance them out. Kind of trying to introduce more of the helpful/beneficial type and weed out the less helpful ones that way.

Personally, I've given up trying to figure out what "normal" POTSie HR/BP is anymore. Apparently my ANS has decided it can do whatever, whenever it likes with my HR/BP. As soon as I think I may have figured out a pattern, it shifts around yet again. Ah....the joys of POTS are just too numerous to be counted.

[Guest Alex]

Westernmass,

a nice, helpful and knowledgeable doctor makes a lot of a difference, doesn't it? Even more so with a condition as frustrating as dysautonomia... Glad to hear you have found one such rare gem. Sounds like a keeper.

As far as your HR and BP are concerned - I've seen those types of fluctuations with myself, and I'm sure others will chime in with similar stories. It is the unpredictable nature of this "beast", but it can also be related to the b.c pills - best to ask your dr if you feel uncomfortable with these newer issues.

When it comes to GP - I have no experience with it whatsoever, but I will post some links to several resources and let you browse through them if you feel like it - hopefully they will be of some value to you as well as anyone else on this forum with similar problems.

Without further ado:

American Gastroenterological Association Technical Review on the Diagnosis and Treatment of Gastroparesis

http://www.med.upenn.edu/gastro/documents/AGAtechnicalreviewgastroparesis.pdf

Different Faces of Gastroparesis

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2797661/pdf/WJG-15-6052.pdf

Gastroparesis

http://digestive.niddk.nih.gov/ddiseases/pubs/gastroparesis/Gastroparesis.pdf

Gastroparesis and Nutrition: The Art

http://www.medicine.virginia.edu/clinical/departments/medicine/divisions/digestive-health/nutrition-support-team/nutrition-articles/ParrishGastroparesisArticle.pdf

Nutritional Consequences of Small Intestinal Bacterial Overgrowth

http://www.practicalgastro.com/pdf/December08/DiBaiseArticle.pdf

Gastroparesis Diet for Delayed Stomach Emptying

http://gicare.com/diets/gastroparesis-diet/

Gastroparesis – Current Concepts and Considerations

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2258461/

Gastroparesis: Current Concepts and Management

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2852706/pdf/gnl-3-166.pdf

Treatment of Gastroparesis: A Multidisciplinary Clinical Review

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2982.2006.00760.x/full

Best,

Alex

[Guest Hanice]

Sounds like dysautonomia to me.

Hurray for good doctors. They ARE jems like Alex said.

[westernmass]

Alex-- thank you for all the links! I'm making my way through them.

Chaos- interesting stuff about b12. Since our issues are so complex and affect so many organ systems, it is overwhelming to try to figure out what is causing what, where it all starts, and what treatments to attempt. There are so many possible directions to go...

Hanice- yes, definitely dysautonomia, lol. I've been sick for a year and a half now. I had a very sudden/acute onset, but I do seem to be gradually getting worse although mentally/emotionally am doing much better than when first diagnosed. And yes, yay for good doctors hopefully something good will come out of this.

I'm new to the salt and compression stockings. Not a fan of the salt but I seem to be tolerating it ok. Anyways, I know there are old posts about GP so off I go to search through those ...