Lily

This probably depends on how sensitive you are, but I like Sigvaris Eversheer and Juzo Soft.  Eversheer is very easy to put holes in, so I recommend getting thigh high instead of waist high.  Any cheap hose from any brand I tried has been scratchy and irritating.  Sigvaris Access and Judi Basic are wearable, but the really cheap ones that you can get for $35 per pair on discount websites are unbearable.  

Hope this helps.

I recommend finding someone, anyone, you can talk to about it, even if it is a mental health hotline, or maybe a priest/minister/rabbi/imam/whatever.  Also, think of (and write down) at least one thing each day for which you are grateful.

Staying positive is an act of the will, not of the emotions.  Difficult, but worth working at it.

This is a fun thread.  I brought "Lamb Chili" (that's the name of the recipe but I made it with emu and beef), with red skinned sweet potatoes and coconut cream.  Someone also bought pizzas, so I had a slice of cheese-free "garden pizza" earlier for a snack.  The Lamb Chili is spiced with cumin, turmeric, ginger, and cinnamon instead of chili powder.    

Another professor here.  The disability office will probably give her a letter to present to professors that details all the required reasonable accommodations.  Present the letter on the first day of class, or make an appointment to talk about it, or go to office hours the first week.  Professors will be more or less sympathetic, but they must do what is in the letter.  It might help to also bring a short article that explains POTS, as professor is likely to have many balls in the air and might not have time for a lengthy meeting right then.

I used to think that there was a portion of ADHD that did not respond to medications, but now I think it was the POTS.  I have found that brain fog is better with the right medications, probably because they increase blood flow to the brain.  I think brain fog is caused by insufficient blood flow to the brain?

My doc did not tell me to increase up to a full dose, but I decided to do that based on anecdotes on the internet.  I started with 0.05 mg for 1 week, then 0.075 mg for a week, then the full dose of 0.1  mg.  No weight gain, no tachy, BP stayed normal.  I might have had a headache for a few days, but I can't remember.  I love florinef.  It has made a huge difference for me.  I feel better without the compression hose than I did pre-florinef while wearing it.  I feel almost normal, as long as I am careful to get enough salt and water.  As for potassium, I drink low-sodium tomato juice (900 mg K  per 8 oz).  

As far as I know a healthy heart will not be damaged by adrenaline rushes.  

I don't think the Clonidine does anything for my ADHD.  Clonidine is only for POTS, knocking my sympathetic nervous system down a notch or two.  

Wellbutrin and Strattera are for ADHD and the Wellbutrin especially has made a great difference.  It is a dopamine reuptake inhibitor, and also weakly inhibits reuptake of serotonin and norepinephrine.  Chief benefit is that I no longer feel like I need to push through a barrier or spend an hour psyching myself up to get started on tasks.  

I'm curious how many people here feel worse when barometric pressure is decreasing quickly.  This is prompted by the incoming post-tropical storm and cold front tonight.  Anyone else cursing the weather?

Finnmin, is your husband's sunnny/cloudy problem worse in winter?  If so, he might be susceptible to winter depression, aka seasonal affective disorder.  For me, being out in bright sunlight makes me feel terrible, POTS-wise, even if its not too hot out.  But then, I live at about 39 degrees North latitude.

I remember reading somewhere that consistent cardio exercise increases blood volume and mitochondrial function, but only if you do it consistently for several weeks at least.  If I can find the article again I'll post a link.  Personally I feel better after I exercise,  Tired, but not POTSy fatigued.  Any little bit you can do will be of benefit.  And keep pushing your limits.  That is the only way to increase your limits.

It might help you to keep a food journal for a while, and write down also every time that you have symptoms.  Sometimes you just need to get some data to see the pattern more clearly.

You could try breathing exercises to activate the parasympathetic nervous system.  Breathe in for 5 seconds, then out for 5 or more seconds.  Repeat for at least 10 minutes.  IIRC this changes the blood chemistry in such a way as to activate parasympathetic system.   

You could try bringing a wide-mouth bottle full of ice, and rubbing the ice on your wrists and neck/chest periodically.  And bring a hand fan, to keep air moving over your skin.  It might be a good idea to call the school ahead of time to ask about accommodations, in case they need to adjust seating arrangements a bit.  Easier to do before than at the last minute.

My new neurologist I got when I moved to my current town suggested I try Magnesium and vitamin B2, 400 mg/day of each.  That prevented migraines quite handily.  Since being on fluorinef, though, I have had to increase my dose.  Other than that, Excedrin and a nap worked for a while, then I went to Zomig when that stopped working.  Mine are caused by weather, specifically storms and frontal boundaries but not all of them.  If you haven't tried keeping a diary, you might find the data helpful.  Write down everything you eat, the weather, stress, how well you slept, and anything else you can think of that might be a trigger, each day.  And note also which days you have headaches.  Analysis of that data might yield a pattern worth testing, like eliminating a food or something.

It has been over a month now and I still feel normal as long as I get plenty of salt and water.  The best part is that I don't have to wear the compression hose anymore.

The humidity is a primary co-variable for me.  I can tolerate temperatures above 100F if the humidity is very low.

I lived in Columbia, South Carolina for a few years.  The heat and humidity started in early May.  The humidity broke in September, but the heat continued until the end of October.  I knew I was in trouble the first time the heat index hit 105 F and there was not a high heat warning.  So different from PA.

I carried around a cooling towel, the kind that you had to get wet first.  I draped it around my neck and shoulders like a wrap, and it did help.  Dressing like an Arab helped, too.  Somehow wearing loose and long clothing made of cotton and linen felt cooler outside than wearing very little.  Also, every building down there has air conditioning.  Minimizing outside time was helpful, as was keeping to the shade as much as possible.

You can ask your employer for accommodations under the Americans With Disabilities Act.  I don't know what would help with the smokers and your asthma, but if there is a reasonable accommodation they could make, and you ask (probably with doctors documentation), then they have to do it.  It's worth considering. 

On 3/13/2017 at 3:40 PM, Stephanieann said:

 I can't tell if its from pots, depression, anxiety, all three. I know autonomic dysfunction causes sleep problems, but the thought that it's from pots and that something is wrong with my brain that it won't shut off is causing crazy anxiety. Sigh. Hoping this too shall pass soon.

Something that helps me when I feel like I can't shut down my thoughts for sleep is to think about something all-consuming but completely irrelevant to daily life.  In my case I think about knitting projects or I work on imagining characters and storyline for a fantasy novel. In my case this is an ADHD thing, but maybe a similar tactic can help you? 

Wow.  First day, 0.05 mg.  I feel normal, for the first time in a long time.  A slight ghost of a headache, but it hardly counted.  I got a little tired after teaching my second class, but not nearly as much as usual.  My thinking has been clearer all day and I got work done more efficiently.  No need for a nap.  I could go out tonight if I was so inclined.  If this is what I can expect from Florinef, I will be so very happy and thankful for as long as I can be on it.  Just saying.

When I fly my symptoms are no worse than usual.  I take care to wear the compression hose, take extra salt and water, and try to get my feet up somehow.

I'm sorry you have to deal with this.  I do not have any such problems, but when I eat a standard american diet I get symptoms consistent with post-prandial hypoglycemia.  I do not have them on a low carb, high fat diet (paleo diet, to be precise).  Perhaps you could try it for a month?  It flies in the face of what the registered dieticians will tell you, but it makes sense to me.  If your body doesn't handle carbs properly, then why eat them?  

If you feel up to it, I don't see anything wrong with waiting to see Dr. Grubb before trying any new meds.  Don't forget to tell him about the idiosyncratic reaction thing, with examples.  Might be a good idea to write it all down ahead of time and take it with you, in case you are having brain fog on appointment day.

Sounds to me like some form of dysautonomia is a plausible hypothesis to consider.  See if you can find a specialty practice, such as a cardiologist who specializes in dysautonomias.