Ctat333

It seems to work well in the AM. The lightheaded and dizziness go away, but my energy is still low. Once it starts wearing off in the early afternoon however, the symptoms come back. I wish I could take another one haha, but doc's orders are only one a day for right now. Maybe I could call tomorrow and ask if it would be ok to take another dose in the afternoons? Only side effects I have noticed are slight goosebumps when the med kicks in, but other than that, nothing.

Hey all Had my follow up with Dr. Suleman yesterday. I have been trying to manage my POTS and EDS without meds and thru lifestyle changes only, and it just wasn't working. I have been feeling horrible, and just really had a hard time these pst few weeks. After telling Doc all of this, he decided to start me on 2.5 mg of Midodrine once a day. I go back to see him in 3 weeks to check in with him on the meds. I'm a little nervous! I've never taken anything "serious" like Midodrine before. If I take pills, it's usually a supplement or Ibprofen, so this is new to me lol! I was also prescribed a prescription dose of Vitamin D (50,000 IU) that they are having me take weekly. My Vitamin D level was at 17....I'm told that's kind of low haha. Any super important things about Midodrine I should know? I've been searching the forum, and it seems like it works really well for some, and not so much for others. I'm hoping it works for me! These POTS symptoms are just too much. Gentle hugs to all! ~ Alison ~

And yes, my testing was done over a 2 day period, with a sleep study in between. You will be exhausted when it's over, so be prepared for that. Make sure you have salty snacks and water with you, and something to do. Make sure you bring any chargers for your phone or tablet. If you are going to his Medical City location, there are plenty of options in the hospital for food. At his McKinney location, there is a 5-10 minute drive to a shopping area with a mulitiude of resturaurants to choose from. You will have a couple of hours between tests for you to eat.

He diagnosed me in March. He's a fantastic doctor! He also reffered me to my geneticist, Dr. Wilson, who diagnosed my EDS a month later. Dr. Suleman is VERY thorough. I don't think I could have gotten a better workup at Mayo or Vanderbuilt. Be prepared to wait a lot. He spends a LOT of time with each patient though, so even though you have to wait, when it's your turn, he spends just as much time with you. If you search "Dr. Suleman" you will find my post about my visit and all the tests he ran. I'm very happy with him Hope your appt goes well, and you get some answers!

When I find out more, I definitely will. I don't know if this is POTS related, EDS related (I have that too lol), or if this is something totally separate. From my reading, I've gathered that this these antibodies are produced in response to some auto immune diseases (Gullain Barr Syndrome, CIDP, Multifocal Motor Neuropathy, etc.) What keeps throwing me off though, is that some studies I've read have said that some patients with connective tissue diseases can produce these antobodies, but it seems like the authors are referring to autoimmune connective tissue diseases, like lupus, sjordens, RA, etc. I don't think Ehlers Danlos would be included in that group, as it's an inheritable condition, and not auto immune related. This is where I'm stuck. I know I have neuropathy, and it seems like my positive ganglioside test confirms this (still waiting on NCV test results too). But it's what is causing the neuropathy. I don't think my doctor will explain the test results over the phone, and I don't think I can wait 2 more weeks until my next appt to find out lol! When I found out the test results, it was because one of the nurses was calling me about my Vitamin D levels, which were extremely low. I asked about the rest of my blood work, because. I didn't have the results yet, and she read the rest of the report to me. I'm not sure if she was really supposed to do that... Grrr, I hate waiting!!

Is anyone here familiar with the ganglioside panel test? That was one of many blood tests that my doctor ordered for me. I got a call last night from my doctor's office because of some abnormal results (go figure haha...) One of the abnormalities was my ganglioside test. All I was told was that it came back "abnormal" and that was level was 55, and that this confirms neuropathy. I have been researching this for hours, but I'm still having a hard time understanding what this means. Can anyone here explain what this panel tests for, and what an abnormal result means? Is this releated to my POTS and EDS, or is this a new can of worms? I don't meet with my doctor again until June 12, and I will for sure get more clarification then, but for now, I would at least like to understand the test a bit more! Thank you in advance, and sorry if my question is confusing lol. Gentle Hugs, ~ Alison ~

How many pills do you take on a daily basis? I am on supplements only, no medication, and take at least 12 and up to 16 per day. And I still have more supplements to add to my regime! I meet with my nutritionist at the end of April to implement the rest of my nutritional plan. I have always hated taking pills, so this is a huge change for me that I am not particularly find of :/

I was officially diagnosed with EDS by geneticist Dr. Gordor Wilson in Dallas, TX yesterday. He also diagnosed my Mom, 2 diagnoses for the price of one haha. He is going to bat with our insurance companies to try and get them to pay for totol genome testing. He has not given us a "type" of EDS yet, since my family seems to be more complicated lol. It blows me away to think that just a few months ago I was trying desperately just to survive long enough to let my insurance kick in so Incould go to a doctor and hopefully figure out what was wrong with me. Now, within just a few short weeks, I have my diagnoses. I can finally put a name on all this madness. I'm not thrilled to be chronically ill, but I'm so happy to have a starting point, at least.

IceLizard, it's been incredibly interesting. I know nothing about genetics, so I have been taking a crash course in Genetics 101 haha. In case anyone is interested, below is the link to the NCBI article regarding COL3A1 haploinsufficiency mutations in Vascular Ehlers Danlos. http://www.ncbi.nlm.nih.gov/pubmed/21637106 ~ Alison ~

Ok, I totally thought I lost my first post, took the time to write a second one, and now I see my original post lol. Sorry for the double post everyone :/. Brain is fried!

Sorry for such a long time since a reply. I have been busy researching via the Inspire forum. I plan on updating more thoroughly later on, but for right now here is a short summary: My family is thought to have the rare haploinsufficiency mutation of vEDS. It is still vascular Ehlers Danlos, but it is associated with a longer life expectancy and a later onset of complications, which are usually only vascular. In my family many people have a very thin, translucent skin. You can easily see our veins running over our chest, abdomen, legs, back, breasts. We look like roadmaps ha ha! Many of us also bruise extensively. After doing some family research, we found we have a history of aneurysms. For the majority of my journey towards diagnosis, I focused on POTS and Hypermobility Ehlers Danlos. This vEDS has really thrown us for a loop!! I completely expected and accepted that I had hypermobility Ehlers Danlos, and that was the cause of my POTS. Apparently not lol. I meet with geneticist Dr. Wilson in Dallas tommorow. My Mom will be coming with me to my appointment, And we are both hoping to get more information and clarification. If we can convince my insurance company pay for it, he's also going to order a genetic test. I will post more later, and Will definitely update everybody on my appointment tomorrow. Back to my research haha ~ Alison ~

Thank you ChristyD!!!! I've been expecting and accepting an EDS Type III diagnosis. I was given information last night that has made me a little unsure of that now. Trying to find as much information as I can! Thank you again! ~ Alison ~

Does anyone on here know if POTS can be associated with vascular EDS, or if it is only the hypermobility type? Also would this board be a good place for Ehler Danlos questions, or is there another forum for that? Thank you! ~ Alison ~

Thank you Ana. I wholeheartedly agree that I would never wish this for anyone, or myself! I'm jut happy to finally know why I've been so ill. I have been searching for a diagnosis for 6 years now, with symptoms going on 12 years. I finally have a little peace of mind. Hopefully now Incan begin my journey on the path to healing Wishing you many good days! ~ Alison ~

Forgot to add that I was given referrals to a nutritionist, radiologist (for pelvic congestion?? No clue what this is, will have to do some research), and an exercise physiologist.

I recieved my official diagnosis of POTS today from Dr. Suleman, at The Heartbeat Clinic in Dallas, TX. I meet with geneticist Dr. Wilson for my confirmation of an EDS diagnosis April 16th. Dr. Suleman is waiting on the results from my gastric emptying study to officially diagnosis me with gastroparesis as well. We have decided to try diet and excersice modification and biofeedback first. I was told to increase my salt to 10 grams daily, and increase protein to 80 grams daily. I was aware of the salt increase, but I had no clue about the protein lol! I see Dr. Suleman again in 4 weeks, and if I am not showing signs of improvement, then we will discuss medication. My TTT results surprised even me! My resting HR was 61 bpm, and within a minute of tilting up, my HR went to 161 and stayed in the 150s & 160s for the remainder of the test. It was torture lol. It feels so good to know that after all these years, I was right.

Forgot to add that Dr. Suleman did the Beighton scale during my exam, and I scored a 9 out of 9. Those joints popped right out LOL

Hey everyone! Finally had my first appt today with Dr. Suleman. They took my vitals, did an EKG, and Dr. Suleman did a physical exam and took an EXTREMELY detailed history. He told me at the end of my appt that he is 99.9% certain that I have POTS and EDS (Type III). He also thinks there is a possibility that I might have MCAS as well. They have scheduled me for a huge amount of tests on March 18-20, and my follow up with Dr. Suleman to go over test results is the afternoon of March 20th. I will let yall know what the results are. The tests he has ordered are: ABM Holter Loop - not sure if this is correct or not, but it's what is on my paperwork Tilt C TCD/PCO2, PFO - I know what a TTT is, but not sure about the rest lol Q-Sweat QST Hokanson VNG Echo Stress Echo Carotid Venous Doppler, AAA Gastic Empyting Study EEG, NCV Sleep Study MST & PFT He has also referred me to a geneticist. The majority of these tests I will have to do some research on. I have heard of some of them, but definitely am not familiar with them all! While I have suspected this for a while, it's still a lot to process. I was really hoping that he could "fix" me, if that makes sense. Help me return to normal. Now I'm resigned to the fact that this is something I will probably have to deal with for life. While not completely unexpected, it was not what I wanted or was hoping to hear. Glad I have yall to support, encourage, and teach me through this journey. All the best, ~ Alison ~

Thank you all for the reassurances on the rhythm. I was probably reading too much into it lol, not an uncommon thing for me to do! I haven't looked too much into the chest strap monitors, so I will research that a bit. Thank you all for the suggestions...I feel like I have a good place to start now!

Good morning, hope everyone is having a great day today! I use an app on my phone by Azumio called the The Heart Rate Monitor. I feel its reliable, and I love that it has a pleth wave graph to show beat to beat HR variability. Truthfully though, sometimes I get more freaked out by my heart rhythm then my heart rate! I had an ablation almost 3 years ago for SVT and was told that it was considered a sucess. About 6 months ago, maybe a bit longer, I started having "episodes" again. They aren't quite the same as the SVT runs I had before my ablation, so they make me nervous since I'm not sure what the are. Since these new episodes have started, I tend to check my heart rate more frequently, not for the rate, but for the rhythm. I have been looking into one of those HR watches. I would like something else besides an app on my phone. Does anyone have a recommendations for me? I really don't want to spend too much money, but I also want something that is reliable and good quality. Thank you in advance!

Thank you everyone! Stefanie, that was such helpful information, thank you! When I spoke with the receptionist while making my appt, she asked about my symptoms. After giving her the rundown, she told me that Dr. Suleman would probably want to run a whole bunch of different tests, since I have many different body systems affected. I am anticipating a few days of testing as well lol! 16 tubes of blood sounds insane....was that all at one time, or over the course of a few days? I am so hoping that he can help me get some part of my life back. I can't even bathe my self every day at times. I don't get hungry and I might eat once a day. I can't play with kids or take them outside. I can't get basic chores done around my house on a regular basis. If Dr. Suleman can help me get to a place where I can get these few things back, then I would be thrilled. I don't need to be "cured." I just want to have some basic sense of independence back!

It IS a small world! How nice that we will have appointments so close to each other. Comparing notes could help us both! I will be seen at the Denton location. I technically don't have a diagnosis of anything POTS related just yet, lol. Looking back, I have been symptomatic since childhood, but symptoms for me didn't start to become severe until about 6 years ago. I have been uninsured for the last 7 years, as I was denied due to my heart problems. I do have SVT, and had an ablation almost 3 years ago right after the birth of my youngest. Since I have been uninsured, it's been difficult for me to see anyone so I have been treating myself and researching for quite some time haha! I am super excited to finally be able to see a specialist. Fingers crossed for both of us that we can get some answers! Please update me after your appt and let me know how everything went!

Hey everyone, It's been a while since I posted. Life and flares have gotten in the way :/ I have finally got insurance, and will be seeing Dr. Suleman at The Heartbeat Clinic in Dallas on March 11th. I have absolutely no idea what to expect! I plan on bringing a list of symptoms, and my medical records from my cardiologist and EP. Is there anything else I need to bring with me? Any words of wisdom or advice that can be offered to me about 1st appointments and what to say or ask? I am so excited to finally be able to start my journey to official diagnosis. I am not excited to be chronically ill and to feel horrible all the time, but at least I have a chance to finally get some help now. That gives me so much hope. I will keep everyone posted. Thank you for all your support! The times that I have been on here I have received nothing but amazing advice and unwavering support....DINET is amazing

Hope everyone is finding today a good day! I was wondering how many women on here have gone through a pregnancy after being diagnosed with POTS? I have had 2 perfectly normal pregnancies since my symptoms started, but as some of you know, I have not been officially diagnosed yet. I am anticipating a diagnosis by Feb or March when I am able to see Dr. Suleman here in Dallas. I went to a birthing center and was cared for by a midwife for both of my pregnancies. Both deliveries were done drug free. I had no complications with either. I WAS diagnosed with SVT during my 1st pregnancy, and had my ablation 4 weeks after giving birth to my youngest. I saw a cardiologist during both pregnancies. I complained of POTS symptoms to both my midwife and my cardiologist (lightheadedness upon standing, racing heart, dizzy, very tired) but I was told that was "normal" for pregnant women to experience. I tried explaining that this had been happening to me for some time before I got pregnant, but they just brushed it off. My hubby and I think that we may want to try for one more little one. I have been doing some research on POTS in pregnancy, and from what I have read, most doctors say it is safe, but still want the patient classified as a "high risk pregnancy." This is where my questions come in. Has anyone here been classified as a "high risk OB/GYN" patient strictly due to their POTS? I would have no other reason to be classified as "high risk." If I was classified as that, I would not be able to go back to the birthing center and midwives that I adore so much. We are not planning on trying to expand our family anytime soon, but I did want to go ahead and start looking at our options. I would love to hear advice from any of you! If you have any research or lit that I can read, please also send that my way! Thank you in advance! ~ Alison ~

Jackie, I have 2 children, and had Paragard put in after the birth of my youngest. I believe I had it done at my 6 week postpartum checkup. I am a huge fan of Paragard. The inflammation that occurs with the Paragard is relegated to your uterus. The first year after insertion is when you have the most/biggest side effects. Hopefully not TMI, but I'm always very forthcoming about Paragard. I bled VERY heavily my first year with it (I have now had it for going on 3 years). My normal period would last 5 days or so, now it's closer to 10. I also have more heavy flow then medium/light flow days. I also experienced break through bleeding during cycles. When my period was already 10 days long, with the break through bleeding, some months it seemed like the cycle never ended lol! You can also get pretty heavy cramping with Paragard. Cramps are the worst the first few weeks after insertion. They do settle down though. I believe the pros are well worth the few months of excessive bleeding and cramping. It is highly effective, and no worries about birth control for 10 years! The hubby and I really like that I have been on every birth control under the sun. My mom is a NP who specializes in women's reproductive health, so she's tried them all out on me lol! I can honestly say that Paragard works the best for me. I don't feel like it has any affect on my symptoms at all. ~ Alison ~