summer

Sorry to hear there are so many difficult things happening all at once. I can really relate to the over stimulation you are talking about. I also feel like over stimualtion is a big problem. I feel like if I can keep control of the things that are "coming at me" I feel a lot better, but life doesn't seem to be that way. I can even feel over stimulated just at the end of the day when all my kids and husband are home, and there is a lot of talking and people moving around me. All the lights being on in the evening can be over stimulating. If there are actually other stresses happening as well, it can really be too much. Maxine and Anna, I also have a son with high functioning autism, and feel that I can now really understand his sensory intergration issues. I think experiencing this myself has better helped me to anticipate difficult situations for him and prepare him better for things that are coming up. As difficult as it is for me to deal with over stimulation, I realize that he has so many additional challenges that add to that - decreased social understanding, communication issues (even though he is totally verbal), etc. I have read one of Temple Grandin's books and have seen her speak in person, but I have not seen the movie. I'll have to watch it. Maxine, I hope you have a few quiet days to relax and spend some time remembering your Mom and your brother. This in itself is more than enough to deal with at one time. God bless and give you peace of mind and physical comfort in the days to come.

I have also had left sided tingling. Mostly in my lower leg, but also in my hand. I had an MRI to rule out MS - which it did. I had an idiot for a neurologist who chalked everything up to "subconscious anxiety" . I have since been diagnosed with POTS and I also have migraines - perhaps it's related to my migraines. It would be a good idea to have an MRI to rule out anything more serious. Summer

I haven't had any testing for Raynaud's either. My doc just diagnosed me based on symptoms. My fingers sometimes turn white and get very numb. After that they turn blue, and then get red and hot. I almost always feel cold too. I am on a beta blocker which is probably making it worse. We did try an alpha-beta blocker, which helped the Raynaud's but did nothing for my POTS symptoms. I'm really not sure why getting into the tub causes vasoconstriction and that purple-blue color, but I have no trouble believing it is related to Raynaud's somehow. It kind of scared me at first, but now I just accept it as another one of my charming peculiarities .

Hi Kayjay! Yes, it does happen when I am cold. Sometimes I feel like getting in the tub is the only way I can get warm. Putting on sweaters, getting under blankets etc. does not help. I do have Raynaud's, as Crow has mentioned. It's pretty freaky looking when it happens! I guess it's vasoconstriction. After I get warmed up I'm very red. Then I get out of the tub and I feel faint, and exhausted. We just can't win! Do you have Raynaud's? Summer

Like Tearose, I also drink very weak coffee in the morning for hydration and to boost my BP. Also, as Tearose said, it actually slows my HR by raising my BP and makes me feel a lot better. It brings my BP up by 10-15 mmHg. I also was advised to stop drinking it because it might increase my HR. This is not the case for me. Summer

Yes, mine too, but not just my hands. My feet and legs up to the top of my knees turn dark purplish-blue as well. I almost posted this same question a couple of months ago.

Hi! I had also came here looking for some advice about dental work recently and did a search. I got along fine at the dentist and asked for local anesthetic without epinephrine. This worked very well, although I needed a little extra freezing partway through the proceedure. Be careful to get up very slowly from the chair. I always feel very lightheaded for a couple of hours after being in that "head down" position and need to have someone drive me home. Good luck! Summer

I'm so glad it went so well for you!! I'm sure it feels great to have it behind you. Congratulations! Summer

Flop and Julie: Thanks for answering my question about B blockers. This makes sense and sounds like a pretty dangerous combonation. It's interesting too, Julie, that the BB actually made your symptoms worse. I know for sure that I do get some improvement with a BB. I'm wondering if there are symptoms that are particular to MCAD that do not happen in POTS. I am prone to rashes, sun sensitivity, random hives (but rarely in bunches). I'm guessing that these things would be more characteristic of MCAD, but I could just have sensitive skin. Thanks, everyone, for sharing your thoughts and experiences. It's great to have all this "first hand" knowlege at our fingertips. Much appreciated!! Summer

Seems that it is very possible that the flushing I'm having is not MCAD. Sounds like it certainly can be a symptom of "just POTS". You know, this could well be what I'm experiencing too - flushing after my body temp has been cold. I'll have to pay more attention. I'm sure that I do not flush like this in the summer. Could it be related to raynaud's - vasodilation following vasoconstriction? Something to think about. Thanks for your response to my post! Summer

That's interesting... I don't think I've ever checked my temperature when it happens. I tend to feel really cold a lot of the time (but not when I'm flushed), and have considered that to be a temperature regulation symptom for me. I wonder if both could happen. Thanks for your reply. Summer

Wow... That's a lot of stress (financial, being away from home for so long, etc.) I have no experience with mold, so far (Thank God), but I'm hoping for you that this process will be very worthwhile when it is finally over. I hope the improvements that you are seeing in energy levels are the beginnings of better quality of life for you. You've been through a lot. Take care, Summer

Thanks. It's so hard trying out different meds because the way I feel can vary anyway so it really is difficult knowing for sure what is working and what is not. Sounds like perhaps flushing can be just a POTS thing and not neccessarily and indicator of MCAD. I really do wonder if the fact that the BB helps and decreases the flushing means that our flushing is not caused by MCAD. Glad the BB has improved things for you. I would have to say the same, overall. Take care Summer

Yes, I feel "fluish" too when I'm at my worst. I remember when my POTS first started that's how I tried to describe how I felt to my doctor - that I felt like I was coming down with the flu over and over again. I still feel that way at times, especially if I have been too active, or pushed beyond my limit. I also get a sore throat, and swollen lymph glands when this happens. Take care, Summer

Thankful, Thanks for your reply. I'm really glad to hear that you have had some relief with the carvedilol. The episodes you are describing sound miserable. And yes, different than mine. I felt like the new med I tried was not really controlling my tachycardia very well.... or maybe at all. It seemed to me that I was tachycardic most of the day and by evening all the sympathetic overactivity resulted in flushing and fatigue. That's just my guess. I don't think it was related to stress or exercise because, if anything, I was taking it easy those days because my new med was not working. First, I thought the flushing might be a temporary 'adjustment' kind of side effect that would go away, but after 2 weeks, I gave it up and went back to my B blocker (since it was not working anyway). After the second day back on my old med, the flushing went away. Now I feel like my tired, brain foggy "old self" again!!! Maybe the fact that the B blocker seems to help it indicates that it is not MCAD. I believe that I read that people with MCAD shoud not use BB but I'm not sure why. Summer

I recently did a trial med change which I had to stop because it caused the return of some symptoms of POTS that I had forgotten I had! The major one was flushing. This happened every evening for 4-5 hours, and I had forgotten how really uncomfortable it is - like a burning in my ears and face. I also got that "internal tremor" feeling again which I had not had for a long time. Can anyone tell me if flushing can actually just be part of POTS without MCAD, or does it always point to MCAD? Also, it happened each evening. Do those of you with MCAD have more flushing at certain times of the day? One more question too, why is it that B Blockers are not good for MCAD. Thank you to anyone who can help. Summer

Flop, Thank you so much for taking the time to give me such a great answer to my question. This really helps a lot. After doing some more research on my own, I also read that EDS patients often develop a larger than usual scar where they received their smallpox vaccine as children ...if they are old enough to have received this vaccine. Apparently, this scar can be used in assessment of patients who do not have many/any sugical or other scars. I thought that was interesting. Hope your wound heals well following your proceedure. Do post a link for a photo if you have one. Thanks again for all your help! Summer

Someone mentioned strange looking scars in a previous post related to EDS. For those of you who have EDS, can you describe how any scars you have would compare to normal scars? I have heard that the scars can be wide. How wide is wider than normal? I think I have quite a few characteristics of EDS. I have an old surgical scar from when I was a child. I'm sure it is as much as 1 cm wide in places. Does this sound like an unusually wide scar?

Hi Frank, This sounds WAY too early for another TTT to me. I remember after my TTT, where I was diagnosed with POTS, it took me about a month just to get over the test! My autonomic doctor told me first to go on my meds, and when I began to get some improvement with the meds, to begin a very slow graduated exercise program. He warned me that this would make me feel worse before I would feel better, and not to get discouraged. He basically told me that I could expect it to take a full year or even two before I would know how much improvement I could expect. I'm sure if I had been retested 3 months later, I would have been into the "worse" part of that. A TTT this soon sounds unneccesary, expensive, and cruel. You need some time to let your body recover. Unfortunately, this "recovering" seems to be a very slow process. I hope you do not have to go through this. Summer

Hi persphone, Sorry to hear about your bad experience with these nurses. I am also a nurse. I find it hard to imagine that nurses who, I assume are used to working with patients who have had general anesthetics, would not know how to handle fainting. It's very common post anesthetic, or even in patients who have been bedridden for a day or two. Nurses should not have to have heard of POTS/OI to know that a person needs to get some blood to their brain immediately! Pretty basic stuff.... It's true that it would not be safe for a nurse to start to transfere a fainting patient back to bed alone (not for the patient or the nurse), but there are ways of getting help quickly if there is not someone right there. That's what the emergency bell is for..... And nurses know how to use it!!! In fact, if you are ever fainting in the hospital again, grab the call bell an pull it out of the wall (if you can). You should get an immediate response by several staff members. Even to have the patient lean forward, and get her head down until a second nurse arrived would be some help. The O2 was a good idea but not enough. These experiences certainly don't build any confidence in the competance of health care professionals. I'm also sorry to hear that you are home too soon. This also is a huge problem in our hospitals. Please take care, and be sure to go back if you are not improving. If you do, have your doctor speak to the staff about your condition, and how to handle fainting episodes (although they really should not need to be told). Summer

I drink original V-8 juice. It has 50 cal in one cup, and 520mg of sodium as well as 520mg of potassium which is good if you are on florinef. I add 1/4 tsp of salt to it (570mg of sodium) and stir it up. I have really gotten to like it (I know many people don't). This is a good sodium boost of over one gram. I have no problem drinking my required water after this because it makes me thirsty. It has very little sugar and gives me 2 servings of veggies. I don't drink this all day long, but often have a glass when I get up and one in the after noon. Then I drink sip water all day.

185/105!! That must have been really scarey for you! Glad to hear that the nitro helped. Have you ever been on calcium channel blockers? It's pretty frightening to think of our blood vessels constricting all over the place. It's hard to understand how it all fits in with orthostatic symptoms, low BP, etc. No wonder we find it difficult to tell other people what's going on with us. It's hard enough to try to figure it out for ourselves! So sorry to hear about all you've been dealing with. Hope you are feeling better and can figure out a good combination of meds to help. Yes, winter here can be pretty vicious! I bought myself an early Christmas present... a big, puffy down filled coat that goes right to my knees! My kids think it's pretty funny, but I plan on surviving this winter!! I guess I've either gotten too old or too cold to be vain!!!! Take care, Summer

Hi Jana, I know what you mean about not being able to get warmed up. Sometimes, the only way I can is to get into the tub. Then I get too hot and.... well... you know . Interesting that you also have migraines. I've even heard that the rib/chest wall pain can be caused by vasocontriction to the small vessels supplying blood to the cartilage - there's alot around the ribs. I guess we'll just have to stay bundled up until spring!! Thanks for your reply. Take care, Summer

Hi! Thanks for your reply. I have read some on the board recently about what you've been going through, but I must admit that I have been finding it too difficult to keep up with the board lately and may have missed some of your posts. Forgive me if you've already posted about this, but did you also have ECG changes along with the elavated troponin? Where you still having CP when you were tested at the hospital. Have you received a diagnosis?....like coronary artery spasm, or variant angina? I also have Raynaud's, chillblains, and migraines. Do you have migraines as well? Interesting that you mentioned going from warm to cold being the worst. I find this too. Like when I leave my house and go out to a cold car. I often get CP if I sit in my car to warm it up (wish Santa would bring me a remote car starter). I live in Canada, so it's going to get much worse than this by the end of January. I was feeling (relatively) great in October after a very sluggish, sickening summer. So I started imagining what I would be able to do this winter! My husband said, "you always feel better in the fall. See how you feel in a couple of months." Hmm.... not so great. It's almost like a whole new set of winter symptoms.

Interesting about the pupil constriction/dilation. Our responses are so different - from very dilated to pinpoint. Ram, what are your thoughts about this?