Nemesis

It's a common side effect yet I don't have it for now

2 hours ago, Alex D. said:

My sends of smell is hightened at times.  This disease is fo variable. 

seems that

On 01/24/2017 at 8:18 PM, corina said:

I'm on octreotide and though I'm not cured my quality of life is much better! It took my doc about 6 months to agree on prescribing it and I had to up the dose a few times but all in all I'm glad my doc agreed on me using it. I need an SSRI with it to have the best quality of life. I convinced my doctor by bringing him research on the use of octreotide in POTS. May be you need to dig into this, I could help you by e-mailing you the articles I handed to my doctor. 

However, this med is not for the faint hearted! I got quite sick when I started it (liver problems) which resolved by itself fortunately and recently had to have my gallbladder out which turned out to be chronically inflamed and overloaded with gallstones. Octreotide is known to cause gallstones so I knew at some point the gallbladder had to be taken out.  Octreotide can also cause inflammation of both liver and pancreas which can be quite serious.

Thanks

Does if I have dysautonomia, and my smell weakened, indicates that there is future vision change

I have blurry vision, sensory hearing loss

Thanks

Is octreotide good to cure pots and it is has side effects?  My doctor refused to perciped it to me

But I read it cured some girl with pots

Thanks

6 hours ago, SarahA33 said:

Hi, nemesis, 

Please read about familial dysautonomia here,  http://www.familialdysautonomia.org/facts.htm from the familial dysautonomia foundation.

FD is a rare genetic disorder of the autonomic system that primarily affects people of Eastern European Jewish heritage. There is a blood test that can confirm if you have the gene,  and a Dr.  Would do a clinical exam to look for scoliosis and lack of tear production.  The other test to confirm is a lack of a response after receiving a histamine injection (normally redness and swelling would occur). Was this doctor a specialist that said you had this? 

No, I didn't do that test I even don't think it exists in my region

I have inherited dysautonomia, my mother and sister and my cousin have dysautonomia

My doctor wrote that I have generalised dysautonomia

Other doctor said because my dysautonomia is inherited and I lose feeling with pain and conscious temporarily after exposure to sun or heat I have familial dysautonomia

Thanks

17 hours ago, corina said:

Nemesis, I deleted your post, it's something only mods and admins can do!

Thanks

I drink parsley tea to help in constipation work like magic bowl in water parsley and drink it a cup help me alot

23 hours ago, yogini said:

My problem is the opposite.  White bread is one of the few things I can eat when my stomach is bothering me!

When I have low blood sugar I can raise it only with carbohydrates like rice, bread,..... etc but not not direct sweet or sugar don't know why

2 hours ago, corina said:

For me coffee (no sugar) works as a boost like you mention Nemesis. I have changed my diet to very low carbs (cut out all refined sugars) as my bloodsugars got out of control. I'm not diabetic but using sugars makes my levels get too low (like 2,6 ie). The symptoms mimic my POTS symptoms but I can tell it's low blood sugars as esp my legs get really weak. I'm telling you as perhaps it may be low blood sugars for you too?

White sugar make me vomit instantly

2 hours ago, corina said:

For me coffee (no sugar) works as a boost like you mention Nemesis. I have changed my diet to very low carbs (cut out all refined sugars) as my bloodsugars got out of control. I'm not diabetic but using sugars makes my levels get too low (like 2,6 ie). The symptoms mimic my POTS symptoms but I can tell it's low blood sugars as esp my legs get really weak. I'm telling you as perhaps it may be low blood sugars for you too?

Yes all refined sugar cause me low sugar blood and it i eat refined suger while my blood sugar is low i have a terrible hypotension

I use one teaspoon of honey it's ok only if I'm not at hypotension

Wish you all well being, healthy life

Best wishes

Yesterday I took Phenylephrine bill and cause me nose bleeding lasted for 12 hours

Strange thing that coffee if low or free sugar boost my hypotension and energize me but if I put sugar in coffee or tea i have terrible hypotension and terrible potsy day

Greet best wishes

I am premature infant born after 7 months I have Hyperadrenergic or pots

I will try it, yes ginger tea is great, personally I love earl grey tea, and green tea but for whatever reason green tee lowering my bp so i replaced it with ginger tea

8 hours ago, Katybug said:

I've never heard another member who has hyperandrenergic POTS say that they had abnormal VMA. From the description you posted above, it sounds like an abnormal VMA would be associated with a pheocromocytoma but not Hyperandrenergic POTS. Pheocromocytoma is a differential diagnosis for hyperandrenergic POTS, so that all fits that they tested you for a pheo. 

Thanks very much I was so confused  glad I found this amazing site

39 minutes ago, rje11 said:

I have Diabetic Autonomic Neuropathy and I have episodes of complete weakness, where I cannot move any part of my body.  These episodes last for hours and I have learned to just lay in bed and let them pass.  I had a new symptom last night which was a bit alarming, though.  I would gasp for a breath and then my body just felt like it "didn't need to breathe" for 20-30 seconds.  Then I would gasp for another breathe of air, but I would not breathe for quite a while at a time.  I am on oxygen therapy, so my oxygen levels were okay throughout this, although they did fluctuate some.  It was just very strange, feeling like I could lay there and just "not need to breathe".  Does this sound familiar to anyone at all?!

Thanks

Rje

Sorry to hear that, I am not familiar with your experience but I hope you get better soon

I had Steroid diabetes for a year but never faced what you said

Regards

Also bisoprolol cause me partial hearing loss

1 hour ago, Katybug said:

What is VMA?

Vanillylmandelic Acid, urine test

VMA test may be ordered along with one or more metanephrine or catecholamine tests when a doctor suspects that a person has a pheochromocytoma. They may be ordered when a person has persistent or recurring hypertension that is not responding to conventional therapies, to monitor the effectiveness of treatment for a pheochromocytoma, and periodically to monitor for recurrence

13 hours ago, Katybug said:

These symptoms sound fairly consistent with POTS/Hyperandrenergic POTS.  Unfortunately,  finding what helps control the symptoms seems to be trial and error for each of us. 

You mention that you can't feel temperature changes on certain parts of your body. Have your doctor's evaluated you for any sort of neuropathy?  That is a common issue with POTS patients ts and might allow more targeted treatment. 

You say you live somewhere warm. Some of out members use cooling vests which can be purchased online. I also struggle with temperature regulation issues. I get both extremely hot/sweaty from even a small change in the ambient temperature, and, I also will become so cold I shiver uncontrollably.  For the heat, I use ice packs and have fans in the rooms I spend the most time in. But it's still definitely a problem. 

Mestinon (pyridostigmine ) is a medication that helped me quite a bit. It might be worth having a discussion with your doctor's about it. 

But is it normal to VMA to be normal with Hyperadrenergic pots? Because my VMA was normal

For whatever reason Bisoprolol increased hot flashes, cold shivers, caused me hypothermia

10 hours ago, Katybug said:

These symptoms sound fairly consistent with POTS/Hyperandrenergic POTS.  Unfortunately,  finding what helps control the symptoms seems to be trial and error for each of us. 

You mention that you can't feel temperature changes on certain parts of your body. Have your doctor's evaluated you for any sort of neuropathy?  That is a common issue with POTS patients ts and might allow more targeted treatment. 

You say you live somewhere warm. Some of out members use cooling vests which can be purchased online. I also struggle with temperature regulation issues. I get both extremely hot/sweaty from even a small change in the ambient temperature, and, I also will become so cold I shiver uncontrollably.  For the heat, I use ice packs and have fans in the rooms I spend the most time in. But it's still definitely a problem. 

Mestinon (pyridostigmine ) is a medication that helped me quite a bit. It might be worth having a discussion with your doctor's about it. 

Thanks I will see about cooling vest

I will ask my doctor about it

Well I took neuropathy medicines weren't effective maybe that relate to my migraine

Thanks again