xRobin

My dad has venous insufficiency and has a lot of blotches, I'm not sure if it would happen from pooling with POTS but it makes sense that it would. I don't have petichea but I have acquired spider veins in my feet and ankles, it was a huge motivation to start wearing the compression stockings. They're great. If I stand for a while with bare legs I definitely get the red legs and purple feet, but with the stockings my legs stay normal skin color underneath. I definitely feel like they're protective against the stress and strain of blood pooling on the veins.

Hope you're OK! Are you alone? I hope someone is nearby in case you need help. Drink lots of water!

I think the big gross veins are the biggest thing for me. I get some crazy blood pooling in the form of bright red skin and a splotchy rash, and the veins just stand out. It looks like zombie skin. My hands get red, swollen, and super veiny. I think pushing fluids/salt is partly to blame for the vein bulge. I also seem to have developed permanent spider veins in my feet which are new to me. So, I've become religious about compression stockings to protect my vasculature.

fyi, you can buy UTI test strips on amazon and if you think you might have an infection you can check your pee yourself so you know whether or not it's just a side effect, irritation, whatever or if you need to go in and be seen for an infection. sidenote: I had a UTI this summer with flank pain and a load of other symptoms. My doctor's office said my fever wasn't high enough for it to be a kidney infection but I felt seriously awful, way worse than any UTI I ever had. After it cleared up I still got the burning but the culture was always negative so I bought the test strips. I think it was just irritation from that nasty infection.

What Andybonse said! I've been doing a program of orthostatic training which is basically just trying to be upright, like what Andy is doing. I can't handle cardio exercise (like many here) because of other health issues, but I do some leg exercises. In the beginning I was almost 100% recumbent, I had to brush my teeth lying down. I started just sitting in a chair for 15 minutes at a time. Eight months later I can tolerate an hour or two out of bed at a time, several times a day. I'm mostly seated, but I'm able to stand up for longer periods of time too. I'm sure things would be along further for me if I could exercise but I'm happy with the progress I am making and intend to keep at it. A lot of the worst symptoms like chest pressure, PVCs, and shortness of breath have improved. I have migraines too and it took a good neurologist to help find the right medication. A beta blocker helps with the tachycardia, and florinef helped though I had side effects so I tapered off and quit. Compression stockings and fluids treat the blood pooling. There's no way of knowing any of our outcomes but in the meantime we just plug away until we find something that works. Best of luck!

I'm interested in tilt training too! I also have ME and have been doing orthostatic training which has helped (but definitely not cured) POTS.

Hi friedbrain! I don't mean to alarm you, and with your history of anti-phospholipid syndrome I'm sure you're very knowledgabe about DVT, but isn't it an emergency? I haven't had one, myself, but two people in my family have and it was treated with a great deal of urgency. One was in ICU because the clot broke off and lodged in the lungs, causing pulmonary embolism. It's treated with blood thinners that require weekly monitoring, and you would also need repeat ultrasounds. I'm not sure where you are or how your doctor's practice is run, but, mine has an off-hours number you can call and they can triage you. They might send you for an ultrasound right away (that's what they did for my Dad) and get you started with Warfarin or equivalent. I'm sorry to hear about this and best of luck. Keep us posted!

If you don't have true celiac disease but are gluten sensitive, it might not be gluten itself but an irritant type of carbohydrate found in wheat. There's something called FODMAPS which is a collection of sugars found in various foods, and one of them is fructan which is in bread. The original researchers who identified non-celiac gluten sensitivity were unable to reproduce the results of their first study, but, they believe that it's probably not gluten causing symptoms but these other elements in wheat. Here's a great article: http://www.npr.org/blogs/thesalt/2014/05/22/314287321/sensitive-to-gluten-a-carb-in-wheat-may-be-the-real-culprit It might be worth looking into a low FODMAPS diet.

I have trigger points, where you press on a spot and the you'll feel it elsewhere. But, usually it's like a spot on my neck gives me pain on my face, not so far away. But, usually the effect is made by pressing, not scratching. (And trigger points are very sore.) That sure is a weird one! Is the pain in your ribs and muscles or deep inside?

I have never experienced such cold feet in my life! I go to bed and my feet are still cold in wool socks an hour later. At first I was putting them on my husband but that was obviously an unpopular solution. My mom gifted me some booties that you can put in the oven or microwave - similar to these - and I love them. It's so much easier to go to sleep with warm feet!

Good luck, Katy. I hope you find something that works. Migraines suck.

A friend of a friend suffered from migraines all of her life. She was given Lamictal for bipolar disorder and was very happy when she realized that she stopped having migraines. I looked it up and it is indeed used off-label for migraines: http://www.ncbi.nlm.nih.gov/pubmed/16291905 I think it can cause some serious side effects but it's one of those ones that is definitely not first line. My mom has some luck with gralise which is a slow release form of gabapentin. I realize that is already on your "done that" list but apparently keeping a steady blood level can be very helpful.

Yes! I was diagnosed with complex transformed migraine. My auras are more of the parasthesia/numbness/odd sensation variety but I definitely have difficulty communicating and thinking clearly. I remember trying to make an appointment with my neurologist's office and having trouble booking an appointment and the receptionist started to lose patience. Because mine were so frequent (daily) they put me on a preventative. There are a lot of drugs used for preventative but many are in the anti-seizure family. I apparently was very lucky that the first one I tried worked! So, mine are much less horrible and painful when I do get them now. A lot of people swear by the triptans, which unfortunately didn't work for me. But, if you get an aura you pop one and it keeps the migraine from getting really bad. Ugh, sorry you had that!

While the swelling and redness are of concern, DVT are deep in your muscle they aren't usually lumps on the surface or bruising. It would hurt a lot when you stood on it. If you're low risk they would order a d dimer before an ultrasound. I'm not a medical professional but I just went through this recently with my own blood clot scare. Like Katybug said absolutely call if you're worried. They can go over the urgent care's notes and at the very least they can give you the bloodwork.

Wow, sorry you're so scared! When I first got POTS it was terrifying. I, too, felt afraid a lot that I was in some type of emergency situation. The important thing is to work with your doctors because they know your test results and are better suited to give you criteria for when to worry and when not to worry. A lot of physicians will have on-call service so if you're frightened you can check in with a doctor and they can tell if you if you need to been seen right away. If you're getting your period you might be shedding some fluid which would affect your blood volume, and might cause more symptoms. Upping your fluid (and electrolyte) intake might help you feel a little better. Are you on any meds? Usually the first line is a beta blocker and florinef. The first will slow down your racing heart, and the second will help you retain fluids and increase your blood pressure. Some people do well with these but others go on to try different medications. Remember, if you have POTS your tachycardia is positional. Meaning that your body doesn't compensate properly for changes in posture. So, having a burst of tachycardia when you roll over makes sense. PVCs (skipped beats) are also pretty common and my cardiologist thinks they're a result of overactive ANS. And, anxiety can very much be part of POTS too! No one can really give you a firm predictor of your outcome. Most of us are trying to manage our symptoms and hoping for the best. But I totally understand how it feels to be scared.

Hi Sarah! I hope the glucose was a blip caused by the seizure, good luck with your fasting test. Strong is a good hospital! The woman I knew (she's a FB acquaintance, so I looked back on her page) had hypercalcemia from parathyroid disease. She ended up have surgery for that, I'm not sure if they removed her entire parathyroid gland or just part of it. But,I'm sure they've probably checked you for that, if your elevated calcium is from the epilepsy than that's of course not an option. I had no idea seizures could mess with metabolism. I'm wondering if your iron is low because you're absorbing all of that calcium? i think iron injections are another option before transfusion. Good luck, Sarah. Sending positive thoughts your way. Keep us posted!

I think this is vertigo? My neurologist said it feels like your environment is moving or you're moving through your environment. I usually get this with migraines.

Hi Sarah, Is that your fasting glucose or was that after a meal? Correcting the anemia and potassium would probably help you feel better; I'm not sure about hyperpots but low ferritin (iron storage) is associated with autonomic dysfunction so that might be something to work on. I think there was a post (here? somewhere else?) about a woman with low ferritin who had a big improvement in POTS symptoms after addressing her iron issue. The hypercalcemia is also something treatable! I know someone who had that and she ended up having surgery and her numbers are much better. I haven't had the tests so can't offer advice but can wish you the best of luck.

A friend of mine has SVT and opted for an ablation because they told her bouts of tachycardia put her at risk for heart failure in the long term. I'm not sure if this is true for POTS associated tachy. Mayo clinic website has some scary complications of tachycardia but they're referring to the type that originates from electrical signals. I look beta blockers as a 'better safe than sorry' option. The do help my comfort as well as my laundry situation because they seem to keep the sweating/hot flash like symptoms under control.

Well, if it's something you want to look into further most insurance companies will cover short term custodial care, for example people recovering from surgery or short duration illnesses that are expected to improve. Your doctor(s) can sign you up for a home nursing service which will typically start with an assessment from a nurse and a social worker, and then they will come up with a plan for how many hours you need per week and what services. Some have PTs that will come so you might be able to get help with your hips. I can't remember how long you can get this for but it probably varies depending on insurance. But, for long term you need to have either additional custodial care insurance (most people don't have that) or Medicaid. And getting home health aides on Medicaid, from what I hear, is a royal pain in the *** but it can be done! Hope someone gives you a hug!

I'm so sorry, too! Grief is a bit like work to get through it, and it's so hard to have to deal with your own physical problems when you really just want to be able to be in a mental space where you can mourn. I really empathize about the showers. I have severe me/cfs and at one point it was so bad that I was too weak to take a real shower for 18 months. It was disgusting, humiliating, and depressing. I used to see people with really greasy and wonder how they could stand it, and then I ended up going weeks between shampoos! The great thing about hair is that it's not like teeth. It can get really dirty with no harm done. You'll get better and you will be able to raise your arms to wash your hair again. Just take it easy and do the best you can. Unscented baby wipes and fresh deodorant in between sink baths can help keep you clean with very little energy. Can you afford a home health aide for a couple of hours even just once or twice a week to make a few meals, change your sheets, and wash your hair for you? That might take some of the strain off of your living situation. I definitely know how it feels to be a burden on others. It's probably frightening for them to see the seizures and maybe they feel in over their head. Have you had a really open conversation about the situation?

I'm not sure if I have abdominal pooling but I definitely had leg pooling. I've tried the velcro kind but it makes me feel like I can't breathe! Maybe the shapewear kind would be better.

Hi Courtney, Those are really good points! I can only speak for myself, here. I don't think having a different cause for fatigue such as POTS or even something like depression rules out a CFS despite what the case definition says, if other symptoms are present. Because CFS is a diagnosis of exclusion they look for stuff they can treat first. It's kind of like MCAD or EDS. POTS can present as a manifestation but is not necessarily the whole story. CFS is more than just fatigue, it usually presents with a constellation of symptoms that are a little different than the POTS profile (though, again, there is overlap) such as insomnia, tender or swollen lymph nodes, headaches, frequent sore throats, post exertional malaise, bowel issues and neurosensory issues such as light and sound sensitivities. (I get fevers, too.) To me, CFS is feeling like I have an infection. In fact, when I actually get an infection I'm not always aware of it, it feels like simply a worsening of symptoms. I haven't heard POTS described this way. People with POTS are tired and weak, they get shortness of breath, blood pooling, dizziness, lightedheaded, etc., and while I could be wrong you don't often hear people with POTS saying they feel like they have influenza without the cough. But, lacking other symptoms beyond typical POTS it doesn't make sense to consider CFS. CFS preceded POTS for me almost two decades. In fact, I passed a standing test at a time when I was so tired and sick I couldn't walk more than a block. Now that I have POTS, too, it doesn't make sense to say that is the cause of my fatigue when I still have all of the prior symptoms of CFS. A lot of the recent research for CFS recently suggests there is likely a strong immunological component, low level of neuroinflammation, and possibly the involvement of various viruses. Both the immune system and the nervous system can affect autonomic function, so it's possible POTS and other types of OI common in CFS are a downstream effect rather than a cause.

Best of luck to Tyler! Is he done with IVIG?

Hi Goschi, I'm not exactly sure what kind of SPECT I had! It was done about ten years ago and I don't know what the protocol was for them then. I wasn't offered a "type" of SPECT so I didn't even know there were options. A friend of mine is in nuclear medicine and she read my report, and said whatever I had was weird so she gave it to a friend of hers who specializes in SPECT and he also said it was odd. I was worried about lyme disease and they said it wasn't typical of lyme. How did they even explain your results??