Kellysavedbygrace

Can describe what you saw on the screen? Did it only leak when standing? Was it as if the entire vein was super permeable or was it leaking only in certain spots? I'm headed to Vanderbilt next week. I will mention it to them and see about getting an ultrasound. Interesting. Thanks.

Yes. You are right. I didn't present w a life threatening heart condition, and his words were insensitive. I think my main point though may have been lost w my description of his message. Sorry to confuse. The key point is current research and clinical assessment overwhelmingly focuses on hemodynamics as a measurement for Dysautonomia. Yes, it is helpful to diagnose and assess the presence of autonomic dysfunction but any cardiac measure is secondary and should be considered secondary in a clinical setting. This abstract is good clinical evidence for that. Perhaps I'll send a copy to him.

I've never tried anything but saline IV. I usually get 2 liters over a 2-3 HR period. It usually takes them 15-90 mins to get the IV going because of difficult veins and it really helps me for about 24 hrs. I use it as a bailout when I'm crashing hard or in preparation for a big event or plane flight. I can drink till the cows come home and still not have enough blood flow. It seems the problem for me is at the cellular level so the extra two liters quick will pick me up. It takes about 4 hrs after infusion to feel full effect. Within 36 hrs it is all gone. My primary doc has a research lab on the first floor of his building. I go there and can call the nurse as needed. It is a great setup.

Last year I saw an EP doc who said, "if your BP and HR are fine, you have nothing to worry about.". This is the same guy who said, "POTS is just a nuisance and not a serious condition." This guy has a daughter w Neurocardiogenic Syncope and is known in my town by many as the go to doc for autonomic dysfunction. Needless to say that was my last visit with him. But I am reminded of that cardiologist as I read this abstract. And hope that someday he reads this or other research that makes this point. This is excellent clinical evidence that the cardiac issues we have are secondary to our underlying problems which involve dysfunction of the nervous system by one mechanism or another, although we all really knew that to begin with. (Involvement of NO is unclear here.) It proves the local doc's words wrong and points out why cardiologists are not equipped, for the most part- unless specially trained in autonomic dysfunction- to deal w folks like us. The cardiac issues we have are secondary We can be extremely symptomatic with or without Hemodynamic change. And, because cardiology is light years ahead of neurology in terms of it's development and ability to assess, diagnose and treat patients- there we all are stuck in the middle of two schools of science with one saying, "It's not a heart issue" and the other saying, "we don't know enough yet about the nervous system to really understand it."

When you say, "numb toes," what exactly do you mean? Is that totally numb w no feeling? Or is it partially numb withs some feeling? Is it pins and needles numb? Cold numb? I have lots of numbness in all my extremities, like Jen said, especially at night and w limbs falling asleep. But never totally numb w no feeling. I think we all struggle w anxiety produced at least in part by our overacting sympathetic nervous systems so it is a delicate balance between using the information we find on the Internet as a help and not a hindrance. This forum is a great place to go to reassure you that your symptoms are similar to others and learn from one another.

I like the strawberry lemonade Nunn. I also really like the Emergen-C Electro Mix that comes in individual servings at my local health food store. Or Vitamin Water's XXX (not the Zero, but the regular). Or the C2O Coconut water. Is there any chance you could be having an issue with the sucralose? I have become sensitive to any artificial sweetener. As far as gaotrade, it is my go to drink when I'm feeling really bad - I think I need the sugar? But I now only drink the lemon-lime flavor which has fewer chemical ingredients. P, I'll have to try that solution you mentioned above- would be a lot cheaper!

I wish I could cut and paste in the forum but I just posted under the current thread, "leg pain" what sounds much like what you are describing without the change of color to the skin. I regularly get Orthostatic edema that is always worse on my right side. Weird that you just posted about this too. What is the kind of test you had done to prove you had "leaky" deep veins?

I use dye free benedryl as an extra antihistamine when I am crashing. I don't seem to notice a lot of difference but it does seem to help relax my sympathetic overstimulation. According to my mast cell doc of the newer class OTC H1s and H2s Claritin and Pepcid seem to be the most well tolerated. Have you tried both? Also, what has been your bad reaction to the anthistimines you've tried?

Funny that this post comes up today. This week I have had a significant worsening in the pain in my right leg. Before onset I noticed regular swelling in my right ankle. During the first month of onset I had many weird sensations- tingling, numbness, discomfort in that right leg. Throughout the past year and a half I have spent so much time elevating my legs that swelling really hasn't been an issue but the sensations have continued in a waxing and waning fashion. Two weeks ago after one of my workouts I stressed something in my right knee. The pain I've had since May have some orthopedic involvement but the major pain seems circulatory or neuropathic in nature. At times I can feel the nerves being tweaked all the way up my thigh and a constant feeling as if there is little circulation going on in that whole leg. I started looking up lymphedema thinking that I might have a lymph blockage but I have little to no swelling (except a bit near the knee). I also notice that if I pump my ankles and get the blood going in my right foot, the pain in my knee/leg seems to temporarily decrease and that especially after lying down it is particularly painful- if not feeling dead. This is one of those symptoms I never talk w the docs about because it seems so minor compared to the palpitations, difficulty breathing and neuro issues- but this week I've wondered if I don't have something seriously wrong w my right leg. As I type this my right leg aches and is slightly numb yet super sensitive to touch especially on the inside. I don't know if this is similar or different to the leg pain others have mentioned.

I have dental pain and jaw pain that tends to increase when I am symptomatic. It doesn't sound like the tightness you have although when I open and close my jaw I hear crackling in my ears. My pain is more of a sensitive dull ache. It happens in my jaw, mostly left side, and in my teeth/ gums around where I've had dental work in the last 2 yrs.

Found this great blog post on Mast Cell disorders including several helpful links. Here it is: http://stoppotsvirginia.blogspot.com/2012/07/find-your-pots-cause-wide-world-of-mast.html?showComment=1357095111361&m=1

Cma, out of curiosity did they identify a regular pathway or an accessory pathway in the heart (also known as a concealed pathway - not visible on normal EKG) which caused your SVTs? Or something else? My cardiologist and I have been trying to rule out an accessory pathway for me which from what I understand is rare and hard to spot. Sometimes I'd get high tachs (180s-190s) but never went into SVTs.

It is an 8 day stay. Sounds like I will be participating in five different studies with more of an emphasis on the physiological elements and less in the trial of medications bc with my MCAS Dx many of the drugs can have negative side effects. I have had significant, but not complete, improvement two symptoms (brain fog and fatigue) with the use of high dose antihistamines. I am trying another approach at aspirin therapy next week. The aspirin is known to block Prostaglandin D2 which we know is abnormally elevated for me but on my first attempt a little baby aspirin put me in bed for two days. I am trying again with a very small dose created by a compounding pharmacy for me. Thanks, I'll look for that you tube video.

Pots is generally defined by an increase in HR by 30 bpm or more upon assuming an upright position. IST has no diagnostic criteria and is considered a diagnosis of exclusion when tachycardia is not explained by something else. Actually you are only about a 5 hour drive from Vanderbilt. I'd look into going there before following local docs down the ablation road. If cost is an issue you can look into being a patient in their research center where they pay for the medical costs. As Peregrine mentioned ablation works well if they can find the specific electrical abnormality. Some patients w A-fib and other electrical cardiac issues can benefit from ablation and most local docs have lots of experience w that especially in treating cardiac patients. I'd make sure to get a recommendation from a doc experienced in treating Dysautonomia. Another thought is to do your own research on ablation in patients w autonomic dysfunction and bring that w you to your appt. Since variable hemodynamics are classic signs of autonomic dysfunction I'd still lean in the direction of Dysautonomia even if you no longer have a clinical presentation of POTS. Of course a doc who specializes in this would be the one to say for sure.

Has anyone been to Vanderbilt as a part of their inpatient research? I am scheduled in mid-January and have wanted to go for almost a year because so much of the top research on autonomic dysfunction is coming out of Vanderbilt. Although I have already been worked up diagnostically at Cleveland Clinic and subsequently been diagnosed with MCAS I am hoping to learn from the autonomic dysfunction team ways I can better manage my case. I did a search of this on the forum but found nothing recent about being a Vanderbilt research inpatient. I would love to hear from anyone who has been there.

I think anytime a thread goes above 50 posts we should have a "super hot" designation. Issie, kudos.

I'm trying to understand your message but it is not clear to me. I am not in Pittsburg and while it may be freezing there I don't think that is the kind of freezing you are talking about. Can you clarify? Autonomic dysfunction has been extremely disabling for me and has changed my life. And my Christmas celebrations, actually most all celebrations, have been changed because of it. Dysautonomia is hard and made harder when people around me don't understand my condition. Nonetheless I have to make the best of my situation and find the blessings in it. You are right in how important it is to be grateful for the people in our lives who love us. From Florida sending hopes of warmth your way...

I have not but from what I understand ablations are no longer regularly recommended as a protocol for treating POTS. I would suggest you get a second opinion from an Electrophysiologist at a major autonomic dysfunction center (if u haven't already) such as Vanderbilt, Mayo, MN or Cleveland Clinic. As a side note, I have POTS, IST and cannot tolerate beta blockers. This allergy/sensitivity is common for patients with Systemic Mast Cell disease.

Busy patterns effect me too! Hotel hallways seem to be the worst.

By the way, I agree w Sue that the research has come along way in just the last couple of years. If you haven't been to NYU Langone yet they are some of the best in the area of FD and some of the most cutting edge research is coming out of Vanderbilt now. so, I think there is hope for a cure. And another thought- sorry if I'm going on too much but just recalled your comment about this: don't fake the smile unless you have to. It's ok, especially in front of your mom, to be honest about what you are feeling. I quit saying, "I'm ok" or "I'm fine" and just put on a smile a long time ago. It's better to be authentic than to be fake. I do try to balance that with finding the blessings in my life and focusing on those. For instance, you could say, "mom, I feel horrible today. Everything hurts and I'm scared of dying but I'm thankful to have you as my mom because I know you love me and care for me just the way I am.". That will mean more and be more healthy for you than holding in how you really feel.

As I read your post I want to reach right across the Internet and give you a big hug. I don't know how old you are now but no matter what that age I wish I could take the other number, 35, out of your head. Unfortunately research produces some numbers like this that can be helpful in some situations and not helpful in others. But what I do know is that you are not the average patient in those prior studies. I can just tell from your post that you are already above average in your hopes, dreams, goals- and I say, go for them as far as you can, learn how to adapt (as I imagine you've already become an expert at) and live not for this lifetime, or for this year, or for this month or day- but live for this moment. And make this moment the best it can be. I've found for me, living in the moment is the only way to cope. If I think too far ahead, I realize the obstacles. If I look back, it easy to see things that I've missed. But if I stay in this moment, focused on taking my next breath when it is really hard or laughing with friends/family when it is really good I am somehow able to get through it. This doesn't mean don't set goals, don't dream or don't plan big, by all means- make those plans- and adjust them along the way as you have to. If you need to. I don't have FD but I have a fairly severe case of systemic mast cell disease and autonomic dysfunction. I've had so many days, nights, (more than I can begin to count) I've thought, "I'm dying" that I can really relate to your post as I'm sure many here can. I'm not sure what your faith is but for me trusting that God is in control is the major force that keeps me from depression. Feel free to PM me if you want to chat more about that- lots to discuss but we try not to get too into that topic on this forum out of respect for all beliefs. Either way I will be praying for you and would love to hear more about your story. Glad you are here on the forum!

YES! That's it! I've tried to describe this before but have struggled. But as you've said it is almost as if it is dim or dark. I don't think it is a true vision problem but more of a vision processing problem (neurological.). It is as if I can't see normally, even though I can see. It's like I am walking outside and I can see only the thugs I need to see- not that the others things like trees, colds, etc. Are not there but it as if my mind doesn't register them. It as if the whole world is dark or dim and I only see the things that are relevant to me functioning. It is the very minimum of processing sight. I also get grey outs, red outs, black outs, blurred vision and other visual disturbances but this is different. This is an everyday, ongoing symptom that worsens the more symptomatic I am and gets better the less symptomatic I am.

Alex, yes. I had all those symptoms before and, as a short acting drug, I don't notice an increase in those symptoms within the first hours following taking it. (note: for me unless it is a long term side effect such as hair loss I tend to notice side effects within the first 15-30 mins after taking something. I have become super sensitive to drugs and chemicals of almost any kind so I don't know if that is just me or not.) Rama, can you explain how this helps your baroreflex responses?

P, that is a great lay description! And, I love the description, "shrug drug!" I have been on it for 9 MOS. And I too have thought it was a shrug drug. It was prescribed for me by Cleveland clinic for exertional intolerance when they learned I couldn't tolerate Midodrine. At that time I was homebound and unable to exercise. Like others I just stayed on it. I have not noticed any direct side effects. Although I have many of the symptoms Alex described above thus far I have not connected them to the Pyridostigmine and don't seem to have any problem immediately after taking. (Isn't it funny how we are all so different!). I have not noticed an improvement in BP or HR. Here's the interesting thing- i had been on 60mg 2x day and recently stopped it, not intentionally- but ran out by accident. Went a whole day and a half without and noticed a huge increase in fatigue. It was like I could barely get out of bed. I've since upped my dosage to 3x day without side effects and have a very mild improvement in fatigue. I now exercise strenuously 3x a week and wonder if it in part has to do with this med. As a side note like you Kitt, I have Hyper POTS w MCAS. But I also have severe blood pooling/ hypovolemia issues.

I've been looking forward to this post that you've been alluding to. Very interesting. Yes, please keep us all posted.