RichGotsPots

I've heard good things about wellbutrin

Thanks now there is an n/a option

You might want to ask for fluids...

Welcome. I see you also have breathlessness issues. It one of the more rarer symptoms. I have several post on here you might want to search about it. Good luck at Cleveland, be sure to update us. Hang in there!

I will also add that my heel pain seems to cause me back pain, groin pain and chest pain and it makes me very fatigued..

Hi Cathy, are you sure you have POTS? I've heard of people having bradycardia but they mainly had tachycardia also. Your HR goes up more than 30 beats per min from Laing to standing to tilt? I also have reAly bad heel pain. I went to a podiatrist and he was perplexed to say the least...

Ive seen some OTC stuff for that. Never tried them but maybe give some try... Rama posted an article about the inner ear and what it control. There is def a connection..

There are a few on the market but all the reviews I've read dont speak highly of them. I recommend you get a pulseOx with memory and data transfer ability. Probably will cost $125-150. No chest strap needed..

Thank you Emma I shouldve added, if you haven't gotten a remission how long have you been sufferring. I'll also briefly say that I had my first flare in 2006, took me about 5 months to recoupe and go back to work. I took it really easy so was fine for about 3 years until I pushed myself and relapsed 3x throught 2011 until I finally had a huge flare that I'm have trouble recovering from, 8 months already with no end insight

Hi all, I have an appt with him for the first time this week. I have talked to some people about him but I wanted to see how many people have seen him on here. Also if you could tell a little about your experience with him, what type of tests he runs and how he treated and what he recommended that would be greatly appreciated. Thanks!

thank you

i put yes but my test came back neg. they treated me because of the bullseye

Rama, calling your theory the Double edge sword theory I agree with it 100% that's why I strongly disagree with the general blanket of treatments most doctors are suggesting for me. They should be doing all day studies to watch our bodies scales all day testing meds on us and monitoring or scales. I learned so much by researching if i may have pulmonary hypetension. When a dr sticks a catheter in a patients heart and pulm artery they test meds on the spot and test pressure levels so they'll know how to treat, that had lead to saving lives. our scales are so delicate they need to measured all day and in every way. Our adrenals, vitamin levels, flow levels, cell activity, nerve activity. Has to be expensive but it will lead to the best treatment. wish i had so wiggle money so i can get a whole department working on me

i posted awhile ago that green juicing has helped my fatigue the most...

i"ve mentioned this test before on the forum. The study i posted said the best way to do the SPECT test was to do it supine and postural so you can see the difference. did they do that for you? Either way you found what you were looking for. very cool! I want to have that evidence for my chest flow ploblems!! Wish they had a spect for the chest. I had a profusion test which is similiar but didnt do it standing and supine didnt show anything, then again they mainly look for clots not flow issues like your doc was. If i knew flow issues were my main issues I would try some vaso constrictor meds, midocrine, octreotide and a few more. Because the flow issue is believed to be because of blood vessels dont constrict fighting off gravity like they do in regular bodies.

i was a reporter once upon a time and the best thing to do is to prepare a little with and outline of what you want to say. make bullet points that are reminders. this will prepare you to get more information in a shorter time... if you improvise there is a danger of getting off track and not mentioning everything you want. Also if you forget something just take your time and pause, it looks smarter than most people realize and always better than using "um" 20x. Good luck!

Awesome!

i agree with Kim screaming is unprofessional! I have tons of experience with Prednisone, took me 4 months to get off of it. but i took it for breathing problems and just incase i had an autoimmune problem. i wasnt able to confirm any problem so i got off of it. Before i took it i did a lot of research about it. it works with autoimmune issues because is quiets your bodies immune system response and autoimmune is your body's immune system overreacting. only problem is that weakening of your immunes response weakens it's response to fighting off infections. The warning for on the prednisone info i got was to becareful washing hands to avoid infection. Since i was on it i got a staph infection and pneumonia. as a side note antacid meds like nexium and prilosec also the stomachs ability to fight of infections, i guess the stomach need some acid to kill bad bacteria.. so sorry you are feeling bad, hope things improve for you soon, trust your instincts

breathing problems

two questions come to mind, have to been to an endocronologist and have you had a sleep study mentioning this/?

i will try to help to make it clear. These are two distinct tachy issues involving the sinus in our heart. You can easily have both issues. diagnostically IST is a rapid heart rate that occurs "inappropriately" in other words when it shouldn't be and it's constant. For example a person before IST may have had a resting heart rate of 60 BPM and now after it may be 90 or 100 BPM. POTS on the other had is any change greater than 30 bpm when going from supine to postural. Myself for example I have both. My normal resting HR went up to 80-90 and when I stand it is 130+ BPM. Generally speaking because of the increase of greater than 30 BPM they usually just call this POTS, it trumps the IST. When talking about treatments on this site they mention abbalation, which is an invasive procedure on the sinus node in the heart to slow it down and they mention it is used for both POTS and IST but some people have bad reactions. I've read that generally IST is treat differently. I believe in the absense of POTS some clinicians treat IST with a pacemaker or abbalation but not POTS. ' Not sure why they dont list IST as dysautonomia because I do believe the autonomic system regulates the sinus speed. It's within our fight or flight response system...

How far are from Boston or Conn? If your currest docs are only running these type of test I think you should try out a real autonomic lab..

Jen, what kind of bad reaction did you have?

I heard it works well but you have to see if there are side effects you can handle..

ok 9 but we need more