janiedelite

I use thigh high stockings, the ones with an elastic/latex band at the top. In order to keep them from slipping down I use "It Stays" which is an adhesive that is dispensed like a roll-on deoderant. It washes off with just water and works great!

I wear thigh high 30-40mm hose and would say that my symptoms are reduce by at least 50% by wearing them. I also think that their benefit is cumulative, to some degree. I had to take a week off from wearing them 2 summers ago while I treated a foot fungus. Everyday without the hose was worse than the day before. Compression is my best treatment!

Make sure that the judge has ALL of your medical documentation, and I'd even bring some articles on dysautonomia and disability. Go to this DINET page and scroll down to Disability: http://www.dinet.org/links.htm

I also brought a record of all of my dr's appointments, phonecalls, ER/hospital visits, etc. They judge agreed it would be impossible to work just with the time spent going to doctors.

Try to send copies of all of this information to the judge before your hearing. My SSDI judge actually did read through all of the documentation I brought and it helped my case.

atenolol and metoprolol and types of selective beta 1 blockers

Hope it goes well! I'll be going to accompany my mom to her appt with him in February. You'll have to start a new thread and keep us updated!

And now.... back to the original topic!

Another thing about "normal POTS chest pain" is that it should get better once you're lying down.

If you're going to get the gastric emptying scan, I suggest getting scanned in the small and large intestine as well. My stomach actually empties faster than normal but my small intestine is slow as molasses.

Yay, Tennille! That's great!

I got horribly itchy feet the first winter that I started having Raynauds/pernio issues. I've also been diagnosed with small fiber neuropathy since then and SFN can present with itching at first.

Benadryl just before I expect the itching to start is really helpful.

Orthostatic Intolerance is an umbrella term that covers specific subtypes such as POTS and Orthostatic Hypotension. You can have both POTS and OH simultaneously.

"but remember most of these cross the blood/brain barrier and then affect our whole body instead which is not good because some parts of our body need vaso constriction and some need vaso dilation"

Every medication taken orally affects the whole body. The blood-brain barrier exists in order to protect our central nervous system, but every other organ will be affected by any medication that we take to some degree.

Personally, I'd rather figure out what is actually causing my circulatory issues and try to treat it, thus resolving my BP/heartrate/and other POTS symptoms to some degree.

Example: my BP goes up on standing. However, the Mayo clinic determined after extensive testing that my high norepinephrine levels while upright are solely the result of my body trying to maintain proper bloodflow to my brain. So, for me it is actually helpful to increase my blood volume with compression, fluids, and salt. These treatments have actually lowered my BP while upright, reduced my Raynaud's problems, and improved my chest pain.

Another example: my mom has carcinoid syndrome. Her tumors produce excess vasopressin, serotonin, histamine, etc. depending on which tumor is more active at the time. If one day her BP is high because of excessive vasopressin, giving her vasodilators will only help briefly and actually will make her worse because the rebound drop in BP will put more stress on her system. However, treating the "tail" of her symptoms with octreotide, therefore stopping the tumors from secreting the excess chemicals, will treat all of her symptoms at once.

I think that there are occasions when patients are left with no other choice but to try to treat just the symptoms. However, it's usually much more effective to address the cause.

"They have a constricting affect in the lungs and a dilating affect in other areas."

It's mostly the non-selective beta 1 and beta 2 blockers that can produce problems with bronchoconstriction.

It sounds like your doctors have probably run tests to check for any serious underlying heart problem, so it may be helpful to keep trying other meds that can help dysautonomia patients. I think you mentioned already trying midodrine. Perhaps octreotide would help as it also vasoconstricts?

It's always good to have your doctor check you for any underlying heart problem, especially if you're noticing an increase in your chest pain. However, my cardiologist says that most POTS-related chest pain results from thoracic hypovolemia. I do know that, for me, lying down helps my chest pain in most cases which would make sense with the thoracic hypovolemia theory.

I'm glad she's starting to feel a little better. Thank you for the update. Hopefully, the next time we hear from you her lung will be inflated!!!

I have seen the best vascular doc at the hospital where I used to work. He checked me out to make sure I didn't have any blockages and then referred me to a neurologist.

They can view your adrenals if you get a CT scan of your abdomen.

Yay! Glad you've got a good treatment plan!

I concur with Katiebug. I went to a store that sold compression hose and tried them on first, then ordered them online for less money.

Sue, I've had CT's of my adrenals and they were normal.

Hi and welcome!

I was on coreg for a couple of years and it was the only medication that really helped my chest pain, but it made me tired as well. It can also actually worsen orthostatic intolerance because it does lower blood pressure.

Is it safe for you to take in extra fluids and lots of salt? Can you wear compression hose?

Another thing that might help you stay mobile as a nursing instructor is a seat cane. You can use the cane to lean on as needed, and a seat pops out if your have a minute to rest.

I keep a large cup of salted fluids next to my bed. As soon as I wake, I drink as much as I can palate. Sometimes I keep midodrine right next to my bed too. It starts working about 20 minutes after I take it.

I'm so happy for you! I love to hear about DINET patients who are empowered to advocate for themselves.

And what a nice, knowledgeable doctor!

Collapsed lung is something that can happen with connective tissue disorders like EDS. (not that I'm saying that's what she has!)

Praying that she recovers quickly!!!

Being on DDAVP, you are at increased risk for low sodium levels. Your doctor should be checking your serum sodium regularly, especially when you have symptoms like this.