nunntrio

Thank you for the reply, It is encouraging to hear that your side effects went away. I hope they do for me as well. I am having dizziness and heaviness in breath as well (luckily not the tingly scalp). I have given up on BB in the past due to the side effect but am hoping to work through them this time. I have also had the problem of BB dropping my BP to much so I am hoping to find the right dose for me.

Sarah, Thanks for the article. I am curious if Vanderbilt recommends they take 20mg in the morning or break it up into multiple does. My Dr. perscribed to take 10mg up to 3 times a day. However he said I can start slowly and work my way up as needed. He is not a POTS specialist, just an internist. There are no POTS Doc's in our area unfortunately. Right now I am taking 10 mg borken in 2 doses, I have had bad reactions to meds before so I want to start very slowly. I would like to work up to 20 mg but would love to take it all in the morning as I am not consistent with the afternoon dose. I am curious how many times a day others take it.

Hi, I was wondering what dosage/frequency most POTS patients use for Propranolol? I have finally decided to retry beta blockers after several failed attempts. Before I try again I wanted to see what dosage and frequency works best for POTS patients. Thanks!!

My son has low c3 and has struggled with chronic hives. They have never been able to find the cause of either the low c3 or hives. They tested for lupus but it was negative. For a while the only thing that kept his symptoms in check were steriods. A few months ago they started him on xolair injections and it has helped a lot!! They have not retested the c3 but it is helping greatly with hives and overall well being. I believe you must have hives or chronic asthma for xolair approval though. I do not think just a low level c3 it iteself will qualify for xolair approval, but it maybe worth at least asking.

I have had spect scan. It shown a mild pattern of global hypoperfusion (SP?) according to the report. It was fairly easy test. I actually thought it was easier then a MRI because you did not have to get put in a tube. It was just sensors that whirled around my head. Unfortunately I am not sure having those results have done much to help much with making me feel better. It is helpful to know the possible cause of my brain fog (my worst symptom).

Katybug-who did you go to for the ct scan. Was is a neurologist?

Count me in. I get this all the time. Really I know what this was. The above liked mentioned CCVSI as a cause. Has anyone explored this option?

Dr. Suleman does address sleep disorders in POTS patients, at least he did for me. If I remember correctly there is a sleep specialist he referred me to in the DFW area because he wanted mine sleep issues addressed further. I am from Houston and could not get back to see that Dr. I would wait for Dr. Suleman appointment and he can probably send you to someone who has deals with POTS and sleep disorders.

Dr. Suleman is in the DFW area. I have seen him as well as a few other on this board.

I have been treated for PCS(pelvic congestion syndrome). They Dr. did a pelvic MRI to and saw there was reflux in many of my pelvic veins. Unfortunately the surgery only helped with the pelvic pain and not POTS.

I tried the exercise program this past fall. While difficult I was able to push through the first 2 months. When I tried to do the extended BSS and MSS workout required the last few weeks I just could not push through. Like you I had to push myself so hard to maintain those heart rates that I was completly unfunction for about 24 hours after. I ended my program at about the 9 week mark. I have been trying to maintain that level but must admit I have slipped back. I can honestly say that excercist in no way came close to curing my of my sympotoms. I was able to exercise and do more phyical activity then I thought possible. My conclusion was similair to yours. I felt the exercise somewhat helped with the a small percent of my symptoms but I still have some underlying cause my POTS which until I can figure out what that is the exercise is not helping. Thanks for sharing your experience with the program.

Linda, I don't really know anything about that type of pneumonia. You can always get retested in about 6 weeks. If the high IGG number you got were just from a passing cold you would think the numbers should decrease 6-8 weeks after the cold clears. Brain Fog is my major symptom and I did test postive both IGG and IGM for Cpn. Antibiotics helped greatly however I am not 100% by any means. My IGM for CPN did eventually turn negative but it took almost 15 month of antibiotics.

Just out of curiosity was the pneumonia antibody for Chlamydia Pneumonia (not at all related to the STD). If so it can actually be more significant then thought. There is research being done at Vanderbuilt about the link between this virus and possible other conditions. Here is a good web site for that. http://www.cpnhelp.org/. The good news is that it can be treated with long-term antibiotics.

WhenI was at Vandy, this device (or something like it)was being tested. I was part of the test, basically they had me breath through it during a ttt. I was very suprised but it did help. Unfortunately I did not get to keep the device.

I can not take B12 at all. I have a horrible reaction to it. It makes me very very jittery. My Dr. tested my B12 again last month and it was low (250) and said I need to take supplements. I am scared to try them again because the last time I did I felt awful. Once I had a Dr. give me a B12 shot before I had POTS and it made me unfuntional for about 2 months. I think myDr. will think I am nuts if I tell him I can not tolerate a simple vitamin. I may explore the NO idea in more depth. Thanks for posting. I thought I as the only one who could not tolerate a simple supplement.

I tested positive (IGG only with a few IGM bands) and was treated for Lyme with about 4 month of IV antibiotics and another 10 months of orals. The antibiotics helped greatly, however I am by no means cured. I stopped taking the antibiotics because I stopped seeing improvement. I have not gotten any worse off the antibiotics so I am assuming the syptoms I have left (POTS) must be damage from the LYME. Notice I said assumed. Some believe you can have chronic Lyme. I really do not know. For me, if antibiotics were readily avavilable I would take some but I have to travel to get to a LLMD. It is not easy. I do still struggle greatly with POTS but I can say that before the antibiotics I was not functional.

I really think there might be something to this. It would completely explain why so many of us feel so much better as the day goes on. I have been put in Cortisol several times because my adrenals test low and it just sends the "Hyper" side of my POTS into overdrive everytime. It is absolutely awful. I told my Dr. my reaction to this and he had no explanation. Anyway, I just don't treat my low adrenal function. Any ideas about what causes us to be sensative to it?

I have had a lot of work done on my veins. The procedures helped a lot with the pain from the veins but so far I can not say they have helped with POTS. However I is still have pelvic congestion syndrome (veins with reflux in my pelvis) that is untreated. Still deciding if I want to undergo the procedure to fix that. The Dr. I consulted said he can not say if it would help with POTS. His experience in dealing with POTS patients with PCS is that some are helped somewhat by the procedure while some have not been helped at all (he has done 5-6 patients with both conditions). At this point their is no published data on it. Again, that was just his personal experience.

Add me to the list, my husband can 95% of the time tell how bad I am feeling based on how dark line under my eyes are.

I have this as well and have always wondered about it. The tip of my nose turn bright red and honestly looks very silly. I have never noticed my ears. I assumed it was somehow related to my POTS but who knows.

Thanks for posting about your experience. Let us know what they say.

I have seen Dr. Suleman and would be happy to give you more details. Send me a PM and I will respond.

I have had MRI, SPECT. The MRI was normal but my SPECT showed a mild pattern of global hypoperfusion. At the time I did not have a POTS diagnosis. I strongly suspect this pattern of hypoperfusion is what is causing the majority of my POTS symptoms. I have also had a trans cranial doppler with a TTT that showed decreased blood pressure to my head (I think I stated that right). I would love a PET scan becasue I think that is even better then a SPECT but doubt I will be able to find a Dr. to order one.

Good point my Dad has fairly bad neurophathy that has to be treated with pain meds yet he does not have POTS. I know there is a Dr. near me that studies neuropathy in diabetics and also has does some autonomic testing with it. I went to him but he was not interested in helping me because I was not diabetic.

Wow, thats great. I can not even imagine how it must feel to know what is causing your POTS. Who did the biosopy (if you don't mind me askint)? Have you had a sweat test as well? My sweat test was Neg. so I did not pursue SFN any further. I have been told however that a bio. is more accurate (not sure if that is true). Very happy for you. I can only imagine how great this must feel.