McBlonde

But (as I understand it) knowing you sub-types of POTS, does not bring a cure in most cases, right? Or do I have that wrong?

Just wanted to check and see how you are today Linj10?

Thinking of you and everybody else that have expressed themselves on this thread and is going through a bad time time right now!

xoxoxo

I had no side effects other than euhporiua and then a mild stoned feeling.

That's not a side effect, that's a bonus!!!

Wow... I didn't know that was a POTS problem. I also have it, but not as bad you all. Mine is my left eye. I notice it when I'm having a "spell" of feeling bad. Come to think of it, that's when I have the pain from my left sinus area and my left knee swells too... all wax and wane. That's bad having it affect your vision!! Is surgery possible?

I'm sorry Ihatebananas! That so true! I think my downward sadness spin started last week. My niece was getting married out of town... In the background, I listened to my friends and family making plans for a fun get together....but there was just no way I could even think of a way to go... Something so simple is so hard. POTS may not be life threatening, but it sure is life altering>> to the sidelines watching.... Big hugs to all!

wow.... AllAboutPeace, thank you for responding! When I posted the extinct of sadness I was feeling yesterday in that thread and then got no response, I felt worse... I have got to do something.. I just don't know what to do.

McBlonde:

So sorry to hear you were feeling down. Hopefully today is a better day for you.

Thank you so much! I'm trying to force myself to "get a grip" and stop sounding like a whiny baby!! Ugh! I hate POTS!

I had that sinus pressure! I think the ENT has sent me for about 3 CT scans of the sinuses since this all began and they were all negative. It's almost like a "headache" in my sinuses..

Welcome to the forum. I'm glad you are here. I know exactly what you are talking about.... Me, who used to be Miss Social, now stares at the screen and can't even muster up a response. Has POTS changed me that much or is that a symptom of my POTS? I don't know.

wow.... AllAboutPeace, thank you for responding! When I posted the extinct of sadness I was feeling yesterday in that thread and then got no response, I felt worse... I have got to do something.. I just don't know what to do.

I'm so down right now, I can't make a post, but I just want to tell you that yes, I know exactly how you feel and I am so very sorry you are going through this... (((hugs)))

So now it's June 17, 4 months later. The "hit by a truck" fatigue that kept me in bed has not come back. I continue to walk every day....from the above 1 lap around the living room to 29 minutes outside every day. BUT, that's it. I still cannot sit up in even a recliner for more than 1 and 1/2 hours... One day I sat for 2 hours and had a relapse the next day. I still can't concentrate so I can't read!!! That's awful considering how isolating POTS is. I am really, really down. This is as good as it gets, I guess. I couldn't even go see my 80 year old dad today for Father's Day. I feel very, very sad and I can't snap out of it, no matter how hard I try. I don't understand the 2 side effects I had from Midodrine (couldn't read at all when on it & then position vertigo started)... The Midodrine worked perfectly other than those 2 side effects that make it impossible. I don't know what is "Like" Midodrine, but without the side effects. I just don't know what to do any more.

After this topic was first discussed in March, I started with 2 laps around my living/dining room.....gradually working my way up to as of today, 29 minutes walking outside briskly. Unfortunately, the only thing that has improved is the length of time I can walk.... The other pots symptoms are still the same.

If she's in a doctor's office, there is a good chance she's not even a RN, so she maybe clueless. I would mention to the doctor and have him/her put it in the chart as part of the protocol of the office visit when she comes in if you want it documented.

Good luck to you! You know, I don't view your fears as mental.... like worrying whether you are going to be able to continually drive across town, etc... that's not mental. That's the type of physical problems we all face with POTS. My commute was 45 minutes and at the end, before I had to quit, I started becoming very symptomatic while driving, but that wasn't a mental state, it was my HR causing me to become symptomatic (and dangerous to meet on the road!) I can so relate to what you are feeling and the lose that you feel. I'm sorry! Take a day at a time. Go to the interview Friday and see how the new situation feels! xoxoxo

My Iphone app for HR was recommended by my physician. He uses it when running. It's incredibly accurate and so easy and inconspicuous to use when needed.

I really hope things went ok for you today!!

By the way, the panicked feeling is normal along with the fight/flight and over reacting, and then the crying is the opposite reaction, when the Autonomic Nervous system isn't regulated properly, so we all feel this way when symptomatic, but I would talk to your doctor, because there are medications that can help with these symptoms, so they aren't so severe, for Blue and Pam...Tachycardia can cause these feelings of panic or overeacting, and the crying could be low blood pressure, too.

I think I've just experienced that. Could you explain a little bit more on how crying is the opposite reaction of flight or fight? Thanks!

That's great Issie! So glad for you. I would definitely need help. I can't believe with my background that I haven't gotten to the point where I can barely comprehend posts on this forum. POTS has dumbed me down.

So glad to read that you have found an awesome doctor. That's half the battle!

If I could go anywhere Id go to Blair Grubb or Vanderbilt.

I'm curious.. is that because of the treatment after the diagnosis? In other words, are those your 2 favorites for figures out the best treatment plan once they make a dx?

For 6 days, Midodrine was like a miracle drug for me. I was up loading and unloading the dishes, washing and drying clothes, just normal stuff that everyone else in the world can do. It was FANTASTIC. But, by the 6th day, I no longer opened my computer, couldn't (or no desire to) READ... and then on the 7th day I woke up turned over in bed and experienced my very first bout of positional vertigo. I stopped taking it and those 2 side effects have been slowly wearing off. The question I have is what is it about Midodrine that would cause those 2 symptoms?

Even worse.... my FP whom I've seen for 10 years had never heard of POTS and didn't know how to treat. I asked him about IV fluids and PT rehab combination.... He said he didn't have a clue and maybe I should see a cardiologist... When he said he'd never heard of it, my first thought was to ask him if he'd ever heard of Google (thought, but didn't say! )

abbyw... I had the same reaction on Cymbalta.. I gained 30 lbs. in 45 days. My doctor took me off of it immediately.... that' s why I was wondering... such an abnormal reaction. On the other hand, I lost on Effexor.. I just wonder what the difference is between what each does to me to cause such opposite reactions?

This reminds me of something I THINK I saw your post, but my memory is ...well, you know... I started as a child with NCS which progressed many years later to POTS. Have you seen that before in your research? Thanks!

Most endos just do the easy stuff.... Thyroid and diabetes.. There is a steroid induced Cushing's... There is a Cushing's board that probably has the most current endos in your area.. The posters are very knowledgeable and helpful on high cortisol, etc. I think the link is http://cushings.invisionzone.com/index.php?