summer

Thanks for clarifying this, Nina. I was not familiar with the boots at all.

Ernie - That must have been really frightening! I'm sure your doctor was pretty nervous too. Glad you got through it OK. Nina - Yes. It was nice to feel clear-headed. My husband teases me that he is going to get me a pair so that we can go to the beach again in the summer! They were comfy, but not very attractive! Julie - For gallbladder surgery? Was it just as a precaution for your low BP, or did you actually hemorrhage? That would be scary too. Summer

Yes, I know what you mean. They really made me feel a lot better. I was so scared of what was going to happen when they were deflated. I was sure that I would pass out right away. I didn't pass out, but my HR immediately went back up and my BP went right back down. The ANS doc told me they only used them when they suspected POTS.

An article copied into a recent post mentioned the use of "pressure pants" for orthostatic intolerance. I'm wondering if anyone else had these used as part of your testing for POTS. This was part of my TTT and I'm wondering if anyone else had these used. They were called MAST pants (military anti shock trousers). They were like a pair of pants that could be inflated like a BP cuff. After several minutes of HUT they were inflated and, apparently in POTS patients, they are expected to decrease the HR, although not right back to baseline. When inflated they decreased my HR from 140 to 125. It was an interesting part of the test because it also decreased my foggy feeling, lightheadedness and chest pain. I have not heard others mention it as part of testing. Anyone else familiar with MAST pants?

Oh, and I would suspect that initially the sodium could cause the spike in BP, and then perhaps the carbs cause it to drop too low. Summer

Hi! Chips alway make my heart race and my bp drop. I always figured it was the carbohydrates rather that the sodium that did it. I have the same response to anything high in carbs - chocolate, sugar, spaghetti, and yep- chips. Sadly, I love them all. I'm not sure if others here have the same reaction to carbs - anyone else? Summer

Hi Amber, Like Cat_Lady, I worry a lot less after reading posts on this board over the past months. After 2 years of these symptoms, I am beginning to believe that POTS is not killing me, although at times, that's what it feels like! I have also learned that it takes a really long time to figure out where my limits are. Maybe this is because it seems to be sort of a moving target. My symptoms vary so much depending on so many things - like what I did yesterday, how much stress I am under, how I slept last night - so many things! There are many things that help, but I find that I need to make sure to do them all together as it's the combonation of treatments that seem to work for me (ie. fluids, salt, meds, compression stockings). Also, I find I get a lot more done when I pace myself - work a little, rest a little. I can actually get quite a bit done if I can discipline myself to do this. I find if I go straight out, without stopping, I get exhausted and pay for it for days. I guess it's a process for all of us to figure out what works for us. All the best! Summer

Hi MJ, When I am coming down with something I do find my POTS symptoms are worse in general. I wouldn't say I feel depressed, but I can be more anxious and jumpy, and my brain fog definitely gets worse. I think increase in internal temperature has as much effect on POTS symptoms as does external - maybe more. Summer

I can truely feel the love you have for your daughter. I'm so sorry for the very difficult time you are both going through. I have 2 daughters of my own and can only imagine how difficult it would be to watch either of them experiencing such illness. I'm sure it is a very helpless feeling. Please know that we are praying for you both. God bless you for loving her so much. I hope your doctor will persist - as I have no doubt you will - and that she will soon have the help she needs in hospital. Summer

I also have a question for those of you who are familiar with trigeminal neuralgia. I have migraines, but a couple of times recently along with my migraine I have had pain extending down into my cheek. Does anyone know if this could be trigeminal neuralgia, or just part of the migraine. Are they related? Summer

Does anyone know if scoliosis can be a characteristic of eds?

Love the poem! When I first realized I was having tachycardia, I thought the obvious thing to do was to eliminate caffeine. After a couple of weeks I realized that this was making me feel worse, not better. I have found that a couple of cups as soon as I get up boosts my blood pressure and helps me avoid the nausea and faint feeling that goes with low BP in the early morning. I now consider it an important part of my treatment plan. It also gives me a little temporary relief from my brain fog. Summer

Yes! I think you described it really well. It is sort of a "dreamy" feeling for me too. I can often feel it setting in as my day goes along. I usually feel clearer in the morning, then from about lunch time on the fog sets in - although, it is not always this predictable. For me, I would say, it's the most disabling part, and the reason I have not been able to work as an RN.

All the best, Ernie. Hope your trip is very worthwhile and that Dr. Low will have some good suggestions for you. Don't forget to wear your compression stockings on the plane! Summer

Wow. I can't even imagine. It's been -29 C (about -20 F) here were I live in Canada recently (with the wind chill factor it feels like -40). I have never experienced heat like that ever! If only we could set up a big air exchanger!

Thank you all for your replies. It's interesting to hear the differences in how all of you experienced this testing. Just wondering as well, if any nerve damage was found, did it effect your treatment plan or your diagnosis? Was the nerve damage thought to be the cause of your POTS/dysautonomia? Thanks so much for your help! Summer

I usually find I am tachy while lying down on my worst days. It's not unusual for my heart rate to be between 100 and 110 lying down. At those times I find I have a greater HR increase when I stand as well. For example, on a better day it might go from 90 to 120 with standing, and on day when I feel worse, it might go from 105 to 155 with standing. I am also tachycardic while lying down if I have just eaten, had a bath, etc. I guess, in general, anytime I am more symptomatic this will happen. Summer

Can anyone tell me what nerve conduction studies are? Recently someone suggested to me that I should have these done. Just wondering if there is anything to be gained by having them. What have your experiences been?

Wow! Congratulations on getting back to nursing part-time. I am a nurse as well but have been unable to work for almost 2 years now. I certainly experience what you are talking about - increasing symptoms with poor sleep or stress. This is one of the reasons I find it hard to imagine being able to return to nursing. Are you doing shift work? Even working part-time, this really messes up sleep. Also, nursing can be very stressful. One of my concerns is that if I would try to return to my previous job, the demands, both physically and cognitively, would make my health worse again. I am finally making some gradual slow improvement but I really feel that I would be unable to return to the same type of nursing I was doing before. I also have concerns about my brain fog at work. I struggle a lot with this and have concerns about giving meds, etc. I am looking at my options now, and hope to find a way to use my skills without putting my own health or the safety of others at risk. I can certainly imagine your exhaution. I would love to hear more about your return to work. Do you have any modifications to your work which have helped? My days vary as well and on my best days, I imagine returning to nursing and miss it very much. On my worse days, I know I could not do it, and try to think of options and ways I could still use my skills - I worked very hard to get them. I also have poor sleep and have used medications to help. I actually find I feel so much better if I use them. My symptoms are worse when I do not.

This is so funny and so true! The name CFS really leads to a lot of misunderstanding and minimizing of this disabling illness. I never say "POTS" either. I usually say "postural tachycardia syndrome" and if anyone seems slightly interested, I write it down for them.

Interesting. What are the typical serotonin foods?

I'm still not sure if I have hyperadrenergic POTS. I believe that I have probably had mild POTS since my teens, but now, years later, after a viral infection, my symptoms have become much worse. The doctor did not actually mention serotonin syndrome. After finding out about this syndrome, I really have wondered if that could have been it, but it's hard to imagine that just one dose of 37.5 mg could cause serotonin syndrome. The symptoms of the reaction I experienced certainly matched.

I had an extreme reaction as well. I had worse tachycardia, SEVERE anxiety for about 8 hours, nausea, very tight muscles (really sore jaw following), goose bumps and tremor - oh, yes, and rapid speech. IT WAS TERRIBLE. When I went back to the doctor who perscribed it, I'm sure he thought I was exaggerating my reaction and blew me off. A couple of months later, when I saw the ANS specialist he told me that I had this reaction because I was "already hyperadrenergic". He didn't seem to think that my reaction was surprising at all. I'm not sure now if he meant I had hyperadrenergic pots, or if he was just referring to the hyperadrenergic state that is common in all pots patients. One thing for sure, it is not the med for me. What I don't know is if this means I would react the same way to all SSRI's and SNRI's. To be honest, I'm too scared to ever try to see. It was one of the worst experiences of my life. Summer

You and Sara are in my prayers as well. Hope they will get this figured out and help Sara feel better. Summer

Thanks for all your replies and for the link, Pat. Yes, I'm thinking this must be related to my migraines. Although they don't neccessarily come together. I would have thought that an aura would always preceed a migraine, but it seems not. Susan, does Sara have migraines as well? Summer