aunie

They did see a few veins initially during a pelvic ultrasound. They did not see it on the abdominal part, but the vaginal part. I think sometimes they are not easy to find, so a negative ultrasound doesn't mean you are clear. Even with the ultrasound results the radiologist wasn't sure, because the MRA/MRI only showed the ovarian veins flowing backwards, it didn't show the nest of varicosities all over. It wasn't until he did the venogram that we saw the real extent of the problem. So he took me into surgery and told me if nothing looked bad he wouldn't embolize anything. Fortunately though we found the big nest and did 46 coils. The record for him is 56 to place in anyone. I wasn't the record, but I was pretty bad and my tests still weren't completely concrete. I knew that there was a problem, because I could literally feel the blood pooling. I would feel heat and pressure and pain in the area and my legs didn't pool that bad, so it had to have been sittin in my gut. Symptoms can be deceiving though because I did not experience much pain until the last few months and they have been this way for years. So sometimes it's hard to tell. If you have even a few of the symptoms I think everyone should be checked and properly, because it could help with POTS or even resolve it for some. Just to try to encourage your docs to look thoroughly, it just another thing to rule out for us POTSY patients. Aunie

Actually is was Dr. Amer Suleman in Dallas. He was reading some past ultrasounds and labs I had from a few years ago and he stumbled on an Ultrasound that said I had varicose veins on my uterus. He referred me to the radiologist to see if embolization would be a good option, since he was thinking the dilated veins were contributing to my symptoms. Back when I had the ultrasound, we didn't know I had POTS, and the gyno I saw thought the veins were no biggie. Not the smartest doc I've seen for sure. My new gyno agreed with Dr Suleman and thought it was a good idea, but I just barely saw a new gyno a week before surgery and I was pleasantly surprised, he actually knew a little about POTS and definitely believes Pelvic Congestion exists.

Okay so awhile back I had posted that I was going to go through a procedure for pelvic congestion. Well I finally had it completed on may 24th, so I am about 3 days post op. I had vein embolization done by an interventional radiologist at UT southwestern in Dallas, TX. First I would like to explain that I had and an MRA of my pelvis and it confirmed irregular flow in both my ovarian veins, but it wasn't hugely obvious if I had a network of them and how bad it was. I had to basically go ahead and go through with the procedure and hopefully they would find something. I am so glad I did! I knew I had all the symptoms and I could literally feel the blood flow in my pelvis so I knew they had to find something. Sure enough he started the venogram and injected the dye and wow did all those nasty veins light up. It was a mess! It was a way easy procedure, I just laid on the table and I got to watch the whole thing, I didn't have anything for pain, just a bit of versed to keep me calm. I tend to react really strange to meds so I opted out of the morphine,but anyone else who does fine with it can have something for pain, although I didn't need it during the procedure, it was relatively painless. I ended up having 46 coils placed in my ovarian veins and some branches to completely block the flow. Okay so I know everybody wants to know what it did for the pots, right? Well Im not sure yet. Before I went into surgery I had been literally flat for the majority of my day, not able to withstand any standing for more than maybe ten minutes at a time, sitting up maybe a few hours max. Probably the worst down period I have ever had. So from that I have improved slightly. When I stand I do not feel that huge rush of pressure and blood falling to my legs and pelvis. My head seems clearer and my legs seem not as blue or puffy. Right now that's about all I can tell. I am still mostly bed bound because the post op pain and swelling is keeping me from moving around too much. Sitting up puts pressure on my pelvis and makes it ache a lot more. My legs are still wobbly and I am still really tired, but to be honest I feel like it's mostly my body trying to recover from the surgery and the lack of movement prior to surgery. I am optimistic that in another week or so I will be healed from surgery and I can start building my strength back up. I don't know if this is what caused my POTS, but it definitely wasn't helping me get better, right now I have alot of healing and catching up to do, but I do think the surgery helped. I am still running tachy and having allergies and flu like symptoms, but Im hoping that this little glimpse out of the fog will give me strength to try other treatments as well. Right now I am not on any meds for the POTS. Im hoping to try some after I heal. I still need vein therapy on my legs too. I will post about how I'm doing for the rest little bit and let you all know how I am progressing. Next week could have the possibility of bringing a dramatic change!

I tried to find the video on youtube but had no success. Can someone send me a link, I would love to see her! Thanks!

I actually had whooping cough the winter of 2007/2008. Began just like you said, but then the cough got worse. I had the classic whooping noise, coughing so long and hard that you feel like you can't breath. I am really sorry if this is what you have. I literally had this for 4 months! the most severe of it was weeks 5-12. I took steroids, anti biotics and nothing helped! You just kind of have to wait it out. I took cough syrup with codeine in it to sleep and to just get through the day. I would vomit a lot too from all the coughing. One thing I would advise is try to control the cough, if you hold the cough and your breath for a few seconds usually you can keep it from getting too out of control! You want to try to keep it down because you could break ribs or throw a clot. I ended up with a pulmonary embolism and cracked ribs from coughing. I healed up just fine, for a few months I still had pain and soreness in my chest but slowly it got better! The only thing I notice still is a wheezing noise when I turn a certain direction and put pressure on my lung and chest. Hopefully your case will be milder, best wishes and good luck! Feel free to msg me, I would love to help you if I can! Blessings, Andrea

It is Gastric Emptying. I'll try just juice and smoothies and maybe some rice. I use to drink green smoothies everyday, but I can't have a lot of the greens, banana or some of the other fruits so it got complicated. I haven't done v8 splash either, maybe that would be good. I've done yogurt, activia to be precise and it made me so tired, felt like I was on a strong sedative. Maybe the stonyfield would be better because it's organic. Hmmm!

Thanks everyone for the info! I have been on 50000 iu a day and now that I think about it, I did tolerate that better. I haven't tried mango's maybe I can have them. Pineapple is a big no no for me, but maybe I can think of some not so common things to try. I really do appreciate everyone's feedback. I really want to try a juice fast, but my glucose tends to crash so I am a little nervous about that. Plus I don't tolerate many fruits, but I think going easy on my digestive tract would be a good idea. So is it digestive upset that is causing the allergies? I am confused as to why so many of us have these problems and what exactly causes it! I have had allergy testing and pretty much all foods came up positive, fish, chicken, gluten, corn, dairy and so on, but I react to tons more, what causes our symptoms to freak out?

Right now I eat organic everything! I go to a local farmer and buy all organic grass fed meats and I don't use lotions or such with any fragance/paraben and so on. I have multiple air purifiers, allergy bedding, reverse osmosis water, glass jars, cast iron pans. I've done almost everything to reduce toxin load and reduce my allergies, but the food is killing me. I tried Ensure, too many additives can't tolerate it! I have a Gastric test tomorrow actually. I think that most the food reactions are allergies because I get runny noses and inflammation. I am also extremely sensitive to medication and other chemicals, house cleaners, pretty much anything you can think of. I take a zyrtec everyday and I think it helps a little, but I am still struggling to find a solution. I feel malnourished and on top of that I am very vit D deficient and I can't get the supplements down without having a reaction similar to shock. I've tried so many different brands and I just can't find one I don't respond to! Well at least I know I am not the only one!

Okay so currently I can eat a total of maybe five or six foods right now. White rice, Bacon, Beans, sweet potatoes and apples. I have a reaction to everything else. Headache, dizziness, nausea, cramping, and runny nose and sinus inflammation, not to mention the all over burning and inflammation throughout my body. They think it's allergies with a combination with the POTS. Does anybody else have this problem? I can't even take half a kids vitamin without a reaction, ensure too. I am really frustrated and the doctor's don't know what to do other than give me steroids. Does anybody have any suggestions or insight, I would love to hear it! Thanks!

Hey Sue, well we kind of found them on accident about two years ago. I was having a lot of flank pain with severe menstrual cramping. My family practice thought I just had an ovarian cyst, so we did an unltrasound and found them then. This was about two years after having dysautonomia, but I didn't know then that that was what I had. I followed up with an OB/GYN and he wasn't very worried about it, he gave me a script for yaz and sent me along my way(didn't take the yaz because I don't tolerate medications well). So I kinda ignored it and time went on. So I kinda put it on the back burner for the last two years because I've been so busy trying to figure out the POTS. SO about 8 months ago I moved to Northwestern Louisiana from Utah and had to change all my doc's, but in doing so I finally got diagnosed for POTS, my cardiologist decided I should see a specialist because he knew what POTS was but didn't treat patients very often with it. So I actually looked up on the physician's list and found a doctor close to me. I'm still on a waiting list to see Dr. Levine, but in the mean time I have been seeing Dr. Amer Suleman in Dallas. He went through all my labs, x-rays and histories and put the two together. He is currently finding the right surgeon to do the procedure for me, he doesn't want to mess around. I find him to be very thorough and investigative. I'm really glad I have been able to see him, plus his office staff is super nice! When I was pregnant with my second child I remember having poor circulation in my arms and getting dizzy on a few occasions, but I just attributed it to being pregnant. After having my daughter everything kinda fell apart, that's when the dysautonoma starting setting in, I don't think the POTS got severe until 2009. Dr. Suleman thinks that my veins got stretched during pregnancy and have been gradually getting worse over the years, thus causing a worsening of symptoms. As of now my PCS symptoms include vaginal pain, abd/flank pain. I can feel blood in the vaginal area almost all the time. If I have been standing too long the blood pooling worsens, then dizziness and fog worsen as well. I think I also have varicose veins in my left leg and all over my pelvic region because I can even feel it in my behind! Pain during sex, and atrocious menstrual cycles. Heavy bleeding and cramping. During menstruation I literally lay flat for 3-4 days, to much pooling to stand. Plus all the other POTS symptoms as well. I am for sure going to do the procedure, I'm not sure of the date yet, I go back in a few days and hopefully I will know when for sure. I hope this helps alleviate at least some of the symptoms! I encourage everyone to at least have it checked, I mean I already had the exam done and it was dismissed as nothing important! I'm really glad that I had that little piece of evidence from a few years back to help piece the puzzle together. I will definitely let everyone know if it helps or not! Thanks Mack's mom, I feel lots better about going through with it, it doesn't sound so bad now! BTW I haven't been a member for long, but I have been reading the forum for quite sometime, I just want everyone to know how much I appreciate every single person on this site! You helped a lonely, scared, wife and mom not feel so scared and alone anymore!

I make myself shop, I hate it too, but I feel like if I let it go, the syndrome has taken one more ability from my life, and that makes me mad enough to do it! If Im really tired and feeling POTSY I always use the mechanical shopping carts, and I shop in spurts. Do a little one day and finish the rest a day or two after! Even if my husband goes, I will still go along for the sake of going! Makes me feel good, makes me feel like I'm at least still capable of participating in life's many activities!

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.

My problem is my left ear. Really bad ear ringing and I use to get a lot of ear infections. I did go ahead and get a tube placed. At first it made everything really weird and worse, but over a couple weeks it got so much better. It's been a year since it has been placed and I have had a lot less trouble. I still get ringing and a few other symptoms, but not near as bad. Before the tubes my whole left side of my face would swell and I would be in so much pain. I'm not sure how it's all related, but the tubes helped some.

I may be moving to Utah and was wondering if there were any good doctors there? I haven't seen any on the lists. Any advise would be appreciated!

Zoloft works pretty good for me, I do get a slight rebound effect in the afternoon after it peaks, but I feel the benefit I get earlier in the day outweighs the rebound. Also I have to agree about the Xanax, it works the best for me, but I try not to take it very often, only when the adrenaline is driving me crazy! Xanax can be addictive and I do get concerned because right now I'm on ativan at night to sleep and I know there is no way I could get off of it, without some major stress and so I'm extra careful about the benzo's. Hope that helps a little!

I totally have the exact same issue. In fact my last menstrual cycle threw me into an episode. I went back to not being able to stand at all for two days because the dizziness and HR were so bad. I am gradually getting back on my feet. Although I am not around your same age, I really can't help you there as I am only 27, but youre definitely not the only one having major worsening of symptoms during their cycles. I have contemplated ablation, but I think hormones have a lot to do with it and that wouldn't solve that.