nunntrio

I am not sure that I can help with your question. I actually thought low aldosterone was caused by sluggish adrenal glands which caused low BP. I can be wrong thought,

I'm not a hormone expert.

I was wondering how you discovered the primary cause of the virus attacking you spine? Are there any tests for that? I have had some unusual infections and sometime wonder about them being the cause.

Wish I could help you more.

Laurie

You need a TST for certain reasons. The TST combined with the QSART can give you evidence of where sudomotor problems may originate.

Google Harrison's neurology in clinical Medicine, p. 335

(I can't figure out how to put that link in so maybe someone else can).

THanks I will look into that as well.

Thanks for the reply. I was told I have POTS based on a positive TT test and a posture study (done at Vanderbilt). I want to find the cause of my POTS. I decided to start with nerve issues because I do have a lot on numbness in my feet and legs. I went to a nerve Dr. closer to where I live (Houston). He did a QSART and an EMG and said my auto. nerves were fine. However he began to question the POTS diagnosis since my blood pressure fell with both my TT test and posture study. I feel like he dismissed me because he did not agree with the diagnosis so I am not confident that his assesment of no autonomic nerve damage is accurate. I actually left his office very confused. Anyway, I spent 2 weeks at Vandy and felt that they would not have kept me if the questioned the POTS diagnosis. I do have a >30 BPM increase upon standing. I will look into a nerve biopsy. If that comes back normal I know I can rule our nerve damage as the cause and look into other issues.

Thanks for the reply.

I just had a QSART done on my legs that came back normal. I want to rule out completely that I do not have nerve damage that is causing my POTS. Is there any value to having a thermoregulatory sweat test or is the QSART a full proof test. I have a lot of numbness (showed up on EEMG) and I want to make sure that is not causing POTS. The Dr, that ran the test said I do not have a automonic nerve problem but he spent a whopping 6 minutes talking to me.

Any input would be great,

Thnks

I don't think it gets enough recognition from doctors yet (and neither does POTS), and is easily missed on traditional testing. My doctor is sending me for a pelvic CT, hopefully something shows up. I'm not sure if it is related to POTS, but I'd like to rule it out. Hormonally something is going on, and that can affect POT symptoms too which seems much worse lately. I went to my GP today and I took a list of all my symptoms, including my poor man's TTT info and she admitted this is not something she understands but will try to send me to someone who will. YAH! Maybe I'll get some help, at least a start in the right direction.

Hi Kerrilyn-

As far as PCS being related to POTS... My son's ped at Johns Hopkins ONLY treats kids/teens with orthostatic intolerance (POTS/NMH.) He has found a correlation between pelvic congestion syndrome & OI. Here is a link, I found online:

http://www.cfsnova.com/sp-Rowe.html

Julle

That is a good link. Wish I still qualified to see a pediatrician so I could see that Dr.

Thanks for posting it.

Just thought this was interesting web site regarding this subject.

http://www.sirweb.org/patients/chronic-pelvic-pain/

Hi,

I do not post often but I believe you are on to something. I have POTS and also have/had pelvic congestion syndrome. I have always thought the must be related but have never had a Dr. put it together. I have horrible pelvic pain mostly with my periods (which is when my POTS is the worst) but I can get it if I am on my feet to long. I also had very severe varicous veins in my legs. This all came about for me after the birth of my third child.

The is actually a procedure's that can be to help with the pelvic congestion. It is called a vein embolization. You need to see a interventional radioligist. I went to a "vein" clinic to get help with my legs veins. When I told him about the pelvic pain he did an MRI and found that the vein that runs through my left ovary had gone "bad" and was causing blood to back up and pool. (The Dr. siad that this condition can be hard to see during a MRI since you are lying down but mine did show up) I have had this done three years. When I did this it was fairly new and is not 100% cure. I would say that I had about a 60-70% reduction in pain. I aslo had other prodedures to remove leg veins. Unfortunately it has not helped with POTS. Although I believe the two conditions must be related. I think my veins are just bad in general. If you look into this do your research. When I had my leg veins "removed" I think there was some nerve damage done. This is not good for POTS people.

I would love to talk to a Dr. who might be willing to look at how the two conditions are related.

Laurie

Thank you everyone for your responses. I guess I will give them a try.

I wanted to know of peoples experience with using BCP to stop your period. My symptom flare badly during my period and I just got a perscription for BCP to hopefully stop my periods. I am very nervous to try them. I am very sesitive to meds and am afraid of what taking hormones will do. But, I am also sick of being so effected by my periods. Has anyone been helped by these?

Has anyone participated in a clinical trial at Vanderbilt? I am set to go there for the last two weeks of February. They are doing all sorts of drug trials for tachycardia, and they are looking into the role the kidneys play in POTS and orthostatic intolerance. While I am NOT looking forward to two weeks in the hospital, I am interested to see what new medications they have for us and how they work.

I did the two week trial in October and underwent the med trials as wll as the kidney test/ blood volumn test. I had a mixed experience. They were able to confirm my diagnosis and they helped me to understand that a lot of my symptoms were being caused by pots. I had no idea that my nausea/vomiting came from this. It also solidifided my diagnosis to my local Dr.'s who denied I had anything wrong. They unfortunately were not able to give me anything to this point that has helped. They have continued to return my phone calls and suggest medications and answer my quetions. If you want more details you can PM me.

Thanks for the responses. Jana I might take you up on you offer. I am a little taller then you 5'10" but the might work. I will PM you to let you know. I am going to head out to the Med. Supply store today.

Thanks again.

The compression hose I have are too short which makes them so uncomfortable I never where them. They do not seem to make them in talls. Does anyone have this problem. Any advice from other tall thin people.

Aslo, can recommend a particular brand/compression level. The ones I use now are so old I can not read the tags and were purchased from a Doctors office.

Any help would be great.

I also had a bad reaction to Zoloft If you want to try a smaller dose you can get it i a liquid form. It makes taking smaller doses more accurate.

Thanks for the reply. I am nervous to try it is worth a shot if there is a chance it may help. I will give it a few days and if it does not help I will take your advice.

Thanks.

I was just given yet another beta blocker to try. All the other ones I have tried have made me feel awful but I am wondering if I did not give my body enough time to get use to them. I stopped them after a few days they made me feel so bad. Do I just need to give my body time to adjust?

Thanks,

Laurie

I live in Houston and I see a Cardiologist for POTS. My son has started having quite a few of my same symptoms and I am in need of a Dr. for him that is at least familiar with POTS. The research I have done shows a Pediatric Cardiologist named Richard Friedman at Texas Childrens. I read that one parent liked him but I cant seem to find much else. I need to get my son in quickly to see a Dr. and thought I would start by asking the very helpful people on this board for advice..

Elizabeth

I am sorry I can not help you with a Dr. for your son. Would be willing to pass along the name of the Cardiologist you use. I live just north of Houston and am looking for a Dr.

I have never posted here before and am hoping someone can help me find a POTS Dr. We live near Houston Tx. I have been to Vanderbuilt but am finding that I am in need of a more local Dr.

Any help would be greatly appreciated.