nunntrio

Do they break in at all - loosen a bit with wearing?

Maybe a little but not a lot.

These are 20-30 (whatever that means). Are they the super tight ones?

I just looked and 20-30 is actually the mid level of compression which is about right. I would not call mine super tight but maybe I am just use to them. I have been wearing them a long time. It took some trial and error for me to find what style/size/brand worked best for me. I think the knee highs run about $30.00. Having the right size makes all the difference. I also had to wear them when I was pregnant (PrePots) because of veraicose veins. Talk about uncomfortable 9 months prego. wearing compression stockings. YUCK!!!

I wear compression stockings daily. They are the only thing that helps. I wear my knee high ones the most, the waist high were so uncomfortable the I found myself not wearing them. I have found the knee high do help but not help as much as waist high however for me it is a good balance between comfort and the need for compression. I also live in TX were it is so hot the waist high stocking would be miserable. I have read that you are not suppose to wear knee high because they can cause adema (I think that is what it is called) around the band. I have never had a problem but be aware of that risk. I also have thigh high and waist high which I will wear on days that I know I will be on my feet alot. Once I found the right sizes for me I ordered them on line. Knee high and thigh high are not as expensive as waist high. There are also different levels of compression. I was perscribed to wear the the medium leven (I think that is 30-40). If you tried on the high compression you might try medium compression. I also like open toed they are more comfortable and I wear holes in the closed toe very quickly. Under Armor also make some compression workout pants that can help as well.

If you think you may have Marfans it is important to get evaluated by a specialist. They will need to do an echo because Marfans can have some serious implications on the heart. Below is a site that might help point you in the direstion of s apecialist that can help.

http://nmfconnect.marfan.org/

Good luck. I am in the process of getting all the paperwork filled out as well. It is taking longer then expected. Let us know how it goes!!!

Here is a study but you will note that people with hyperthyroidism have LOW (yes low) catecholamine levels even though they suffer from a hyperadrenergic state. Hypothyroid patients have higher levels of catecholamines, but it has everything to do with the receptor sites.

http://www.ncbi.nlm.nih.gov/pubmed/2189309

Here's another one that just says thyroid hormones play a role in the beta-adrenergic receptor responses to catecholamines.

http://www.ncbi.nlm.nih.gov/pubmed/6257196

If you type in catecholamines thyroid into google you'll find a lot more info.

Thanks - Interesting. I will spend sometime reading about this.

Nunntrio,

Thanks for the interesting topic. I wish we weren't here discussing it at all.... but at least POTS can be intriguing.

No problem - The more I try to figure this out the more confusing it gets. I do like a mental challange but I am ready to have this one figured out. Hopefully it will happen in my lifetime.

Dana - Do you have links to the thyroid function studies? I have a lot of hyper symptoms but low NE levles but I do have hpyothyriodism. It would be interisting to read.

Thanks for all the replies. I also thought that >600 was just for the hyper diagnosis of POTS. It seems there is not a complete agreement amongst the expert medical facilities for a clear difinition of POTS. I like the idea of parasymapthic withdrawl may account for those of us that have low NE. I had all my testing done at Vandy and they are the one that gave me my POTS diagnosis. My standing NE levels via IV were all under 400 except for once when it did climb to 894 (yes they tested them 4 times). So according to this article I did not qualify for a POTS diagnosis. I have a feeling they are sick of me asking questions or I would email them to clarify. Still pretty sure I have POTS though as my posture study show a 40 bpm increase.

I was just reading the below article from Dr. Raj that states you have to have a standing Neoroepinepherine level greater then 600 to qualify for POTS. Does anyone know if this is still true? The article was published in 2006.

http://www.ipej.org/0602/raj.htm

I love this. It is so true.

quote name='Worried Mom' timestamp='1300850547' post='154210']

That is really helpful. Thank you all.

Chaos, We have tried support hose but they made him too hot which makes him feel worse. He also HATES them because he is 14:(

The other problem is that he is very tall 6'2 1/2 so he needs an XL for the height and then they are too loose around his calf. They said that they can special order them for $80 but it is unlikely that they will get used. I don't want to damage his psyche by making him wear them in middle school. He is very positive despite feeling very bad most of the time so I am picking my battles.

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There are types of sporting cloths that provide compression and may be helpful. My husband bikes and he bought me a pair of compression bike pants that are helpful. They maybe a lot more suitable for a teen boy. I think Under Armor also make some compression wear.

Do you know where I can get a copy of the article written by Dr. Raj? I would love to see it. I did see Dr. Raj while at Vandy, he was nice but I only saw him in a research compacity. He was not my treating Dr.

I asked my cardiologist about this article. He read the article and the one thing he pointed out was that there was no mention of wether or not the people who "benefited" from the study actually felt any better. He said usually when they do studies they given the participants questionaires to see if they feel better as a result of their number improving. This study does not include this piece of annalysis. It does not matter if heart rate only jumps to 25 instead of 35 if you still have symptoms. I thought it was a good point. He said that it is still worth trying if I wanted. I am considering trying it because I know I have become deconditioned but I do not feel that is at all what caused my ititial onset.

I am in the middle of exploring the same thing. I have lots of neck issues and wonder if it could be contributing to the POTS. I have been in lots of pain and discomfort for over a week and decided to take another look into this. I found a neuro-surgeon who specializes in the spine and will be making an appointment to see him. He requires the MRI be less than a year old, so I am actually going tonight to get a new cervical spine MRI. I am not confident that he will know anything about the spine/autonomic connection, but I would think if anyone would know -- a neurosurgeon SHOULD. If you ask your neuro that question ...I'd love to hear his response.

Hope it goes well. Let us know if they find anything.

A meatier explanation and discussion of POTS-flow.

Thanks for bumping this up. Do you know if there have been any new studies to elaborate on this? This post is 1 1/2 years old. Rama has not posted much lately. I always like reading Rama's posts because they were full of this type of stuff.

Okay, well I have POTS and I am currently untreated. My doctor wanted to wait and do more testing before we try another treatment, but he finally put two in two together! A few years ago I was diagnosed with Pelvic Congestion, none of my doc's put PCS together with POTS. Now I am kinda excited because he is pretty sure that this is what is causing my POTS, but I'm feeling a little nervous, almost like I don't want to get my hopes up that embolizing them is going to fix everything. I just don't want to be dissapointed. I have suffered a long time without proper medical attention, it took four years to finally get a POTS diagnosis. So I guess I'm just skeptical to think that it will make the POTS dissapear. I was wondering if anyone out there has had this treatment and if it significantly helped them. I have multiple large varicose veins on my uterus and those are the ones they can see on Ultrasound, they say it may be much worse. I guess I just want to know if I should have a reason to hope for some improvement.

I have both PCS and POTS. I have had mulitple venograms and one embolizations (with both alcohol and coils). I am very impressed that you have a Dr. that put these two conditions together (POTS & PCS). I have had many Dr.'s and none of them ever connected the two until I asked about it. Do you mind me asking who your Dr. is?

The venograms and embolizations are both very easy procedures to tolerate. I was basically recovered and functional within 48 hours.

I completely understand you about you being to afraid to get your hopes up. I really do not have a good answer for you regarding if I was helped. I still have POTS symptoms however, I know that I still have vein problems. I have heard that it can take multiple procedures for them to get all the veins coiled or embolized and in my case that seems to be the case.

I initially had PCS and was treated before my POTS became so bad. I had a repeat venogram done in December and it detected I still have some reflux in the veins in my left ovaries and my legs (based on ultra sound). I still struggle with the pain of PCS. The MD said that he didn't think that these remaining reflux issues were significant enough to cause all my POTS symptoms. He felt they were a contributing factor but he felt there was another mechanism contributing to my POTS. However, he is open to embolizating it if I want. I was very disappointed and I am still not sure what I am going to do. I can deal with the pain from PCS because tylenol can help. I would only do this procedure if I felt like it would help the POTS.I definitely do not want to discourage you from prusueing this. In my heart I sort of knew my vein problems were not going to be the answer because I had vein issues well before I had POTS problems. It is very frustrating because both of the conditioned are not very know in the medical community. I feel like I have been hit with a double wammy of diagnosis. Again, I do not want to discourage you everyone has a different experience.

TXPOTS- Interesting piont. Even in those without symptoms there is a wide range of normal. I guess I just assumed a 10-15 bpm increase was standard. Now that you mention it, I might have a small study of my own with my friends and family. I have only ever tested my husband. I love the lemon diagnosis term!!!

Firewatcher - It occured to me also that they may have only tested low flow pots people. If that was the case I would have been considered a control. I would have hoped they would have let me know that a head of time but who know's.

If I get any further clarification about the study I will let you know.

I assume that you mean your angiotensin II levels were consistent with the control groups- right? Certainly doesn't mean that you don't have POTS- just not a part of that very narrow group that Vandy is trying to identify- a subset w/i the low-flow category.

I'd still like to see the full article too as I'm curious as to HOW they got HR's so high among the control???

Julie

Yes, my angiotenson II level was 32.1 which is consistant with the control range. They did not tell me what my aldosterone or renin numbers were. I did put a call in to get some clarification on my results. I do not have low blood volumn which I think is cocsistant with the low flow sub set they were testing for. When I have a few extra minutes I am going to search for the full article. I have no idea where to look but I will try. I would like to get an answer to the HR question at least for my own piece of mind.

I don't know how to get a full copy of the article. Does anyone have an idea? I guess I will try to find it. I am sure there is something I am missing.

Mack's Mom - I did my results and my levels were consistant with the control group which makes me wonder even more about criteria for being a control or a POTS subject.

I decided to start a new thread because the other was so long. For those of you that understand this stuff better then I do can you explain this? In the study in states that "Pots patients had a larger orhterstatic increase in heart rate then did controls (52 +- 3 (mean +=SEM) vs 27 +-6 bpm, p=.001)". I thought a POTS diagnosis was defined as 30 bpm increase, why are the control bpm increases so close to a POTS definition? I do not understand scientific methods but I am hoping some of you will. I am asking because I was a part of this study and my bpm increased are usually only around 35.

Thanks.

Here is the link again to the study.

http://www.ncbi.nlm.nih.gov/pubmed/21266211

Hello, I've been dealing with POTS since Nov.2009. I have had every test known to man, so I thought. I have had two cardiologist confirm I have POTS. Lately, if you've read my recent posts, my bp and hr are way way up there with no relief from my medications. So yesterday while at my POTS dr. he said "Lets do a Renal Artery Ultra Sound". So I did in his office. And guess what????? My right Renal Artery is 80% blocked! Renal Artery Stenosis causes high bp. Now he said you may NOT have had POTS or this could be a secondary incidence. I go for a MRA which will tell them just how blocked it really is. And then the surgery to place the stent in the blocked artery. Did I tell you how HAPPY I am to have found something that might be the problem to my high bp, hr, nausea, palpitations and confusion???

I am 48 years of age. I will tell you while I am happy, it is bitter sweet. I am scared at the same time. But this kinda gives me some hope of getting relief.

Just wanted to put this out there for any others whom like myself couldn't find a drug that would help with the high bp and hr.

((hugs to all))

Dixie

Thanks for posting...I love hearing stories about people who figure out the cause of their POTS. It gives me some hope to keep searching for myself (I often feel like giving up).

I sent off an application to be evaluated at Vanderbilt, and I am wondering how long it takes to hear back from them? My overall condition has deteriorated at an alarming rate over the last 6-8 months, and I am becoming increasingly anxious about what is going on with me. I was going to follow up today and just make sure they received my paperwork, but I was hoping someone could shed some light on how long it takes to get in, and an idea of what to expect. Doing the rounds of specialists lately seems to be the equivalent of chasing my tail! Plus my recent Celiac diagnosis makes managing my POTS even more complicated, and would LOVE some guidance on trying to manage the two together!

Sandy

Are you applying for their 2 week study? If so I heard back from them very quickly. If I remember correctly it was just a few days. It took 2-3 months from that point for them to get me in, that was 18 months ago. They have you come in for 2 days to see if you meet the criteria to get into the study. If you meet the criteria then you stay the rest of the two weeks. I can give you more detail about my experience but would rather do it in a PM. Let me know.

Is there anyway to get a copy of the exercise program without applying for the study? I would like to consider trying it.

Hey I recently got a Trans-cranial doppler ultrasound which came out abnormal for my left anterior cartoid and the left side. I have had an MRA of the brain though and it was alright. I have always complained im not getting enough blood flow to my head and have cognitive impairments. I also have a retroflexed odontoid and abnormal clivo-axial angle. The doctor is gonna get the MRA rechecked but I don't know. Any ideas? I know there is something wrong!

Who did your trans cranial doppler if you do not mind sharing? Were these tests done standing or lying down. I know in my case it could make a difference. Just an idea. Did they give you any additional feed back about the abnormal doppler?