kmichaelson

Good job, Sarah, and I'm so happy for your good news.

What a great idea for a topic! It's so easy to devalue what I do all day because it's so much less than it used to be, yet it takes so much effort!

My small achievement today was having a video call with two relatively new friends. I feel so socially isolated when I'm not feeling well, so it was nice to talk with someone other than my husband and my cat.

Thanks @Pistol. I looked into NCS long ago when I was first learning about dysautonomia, but it's been a very long time. I'll check out the information you mentioned since I know low BP would fit with that. Thanks again!

Thanks to all of you for this information! It's so helpful to get others' perspectives on this. @Pistol, thanks so much for the link to that article. I should have mentioned that I was diagnosed with POTS about twelve years ago, but I had low blood pressure on my tilt table rather than high blood pressure. However, since I passed out, the doctor I had at that time, said I had POTS. A subsequent doctor said it wasn't POTS, but some other kind of dysautonomia. Recently, I've been having daily POTS symptoms--shortness of breath, weakness, fatigue, blacking out when standing, exercise intolerance--all that good stuff. That's why I'm hoping IVs would help me, especially as I try to gradually increase the amount of exercise I do.

@MikeO, I'm curious if you have figured out the type of dysautonomia you have since you have low blood pressure too?

Hi everyone,

I passed out last week in a public place, and the business owner called 911. My blood pressure was 50-something over 30-something, and I guess my lips were blue, so the EMTs did an EKG on me. They told me that the EKG results showed my potassium was too high and my sodium too low, which they called hyperkalemia. I told my primary care doctor about this, and he didn't seem to take my word for it (which is a whole other story!) and ordered a blood test to check my electrolytes. The blood test showed my potassium and sodium are within normal ranges. I had the blood test more than a week after the EKG, so that could be the issue. However, I wonder if anyone else here has had a similar experience where your EKG shows one thing but your blood test doesn't back it up? I'm just not sure which test to believe. I'm also not sure if it's possible to get any documentation of my EKG to show my doctor. 

What's really frustrating is that I want my doctor to order saline IVs for my POTS, but he seems unwilling to do so without the blood test showing low sodium. I know there's documentation that shows saline IVs are helpful for people with POTS due to low blood volume, but I'm kind of tired of fighting him. It seems like every time I try to explain something to him, it just convinces him more that I'm a hypochondriac, especially when the tests don't back up what I'm telling him. I also tried to get a saline IV from a medispa, but the doctor who consults for them wouldn't sign off on it because I'd been passing out... that's why I ended up going to my PC doc for blood tests! Ugh.

I'm so sorry you're in the position of knowing more about this than your specialist. More importantly, I'm sorry that he seems so unwilling to listen and learn. I hope that talking about it helps ease the frustration. If only doctors knew how much harm they cause when they are so dismissive --and then we get a bill for it! I hope that you are feeling better about the situation after some time.

Edit: Oops, I posted this response in the wrong thread!

Thanks so much to all of you for your help! This is such a caring and knowledgeable community. 💖 I'm feeling more positive about things today, but I was just so shocked and discouraged by how completely unhelpful my doctor was yesterday. I appreciate all of the information about how you get IVs and am going to look into some of the options you all have mentioned. Great advice about a local Facebook group as well. You all are great and have made me feel more hopeful!

Thanks, Doug. I appreciate the well wishes and the advice on getting IV fluids. I'm sorry that you're having issues from scarring though. It sounds like you're coping with a lot.

Hi all, I am returning to this forum after a long time away. This forum was a lifesaver for me when I joined about ten years ago and had no idea what was wrong with me. Eventually, I was diagnosed with POTS--a diagnosis I probably never would have reached without DINET. I have been fortunate to be able to manage my POTS/dysautonomia symptoms fairly well over many years. I'm not saying they didn't interfere with my life, but I improved with the right medicine and many lifestyle adjustments. But suddenly, I feel like I'm back where I started ten years ago when I was first diagnosed. I have terrible shortness of breath with any exertion, exercise intolerance, adrenaline surges, racing heart, and near syncope nearly every time I stand. Plus there are a million other weird little symptoms that I know you are all likely familiar with.

Unfortunately, I've had two wonderful specialists who treated me retire, so I made an appointment with my primary care doctor, and it was such a terrible experience. I told him how I've been feeling lately, asked if he could recommend a new specialist. He told me to get on a regular exercise program--which I have been for years--so I told him that I have tried, but now I feel much worse after exercise. He said something like, "well, that's not what we want," got up, and left the room! There were so many things I wanted to ask him about, but he was gone! Then his nurse came back in with my referral paperwork and to tell me the appointment was over. It sounds like it will likely be months before I can see the new specialist and I'm afraid I'll have to go through all the testing again. It's just such a scary feeling to be back where I started and not know how to get better. I'm sorry for the long complaining post. I just know that people here understand what this is like.

On a side note, I have seen posts from people on this forum who do IV fluids on a regular basis. Could you tell me more about how you do that. Do you go into urgent care every time? Does a doctor order it? My insurance isn't great, so I'm worried about the expense of that, but I might need to try it just to see if it helps. 

I'm so sorry you're having this @Derek1987  I've had POTS for about 10 years now and I think I just started having these adrenaline surges over the past year, and they are so awful! At first I thought I was having panic attacks, but they hit me around the same time every afternoon when I try to rest and I realized it must be related to POTS. I'll be trying to rest and suddenly I feel terrified, like someone just jumped out and scared me or I was nearly in a car accident. Is that what other people feel when they have this issue? 

Thanks to everyone for ideas on treating this. I feel like I do a good job of hydrating, but I don't do IVs. Maybe I need to start, but my insurance is terrible so I don't know if I can afford that on a regular basis.

I received a notification about a Midodrine study from my pharmacy and filled out the survey online and now I'm getting calls to participate, but I was hoping to find out more about it before actually signing up.

It looks like it studies the effectiveness of midodrine, which has been almost literally a lifesaver for me. I'd think my participation would support midodrine use, but I know that it's been somewhat of a struggle to keep it on the market, so I don't want to participate in something that could contribute to it going off the market.

Sorry if this has been discussed already, but I did a quick search and didn't see anything about it!

I'm on midodrine which has helped some, and then my POTS doctor prescribed 20 mg of prozac in addition, and I've definitely felt better since then. My normal BP used to range from 80/50 - 90/60 and now it's closer to 105/60-70. I've been on it for about 4 months now I think.

Hi everyone, I just had a new and not-so-fun experience last night. I know a lot of people here get severe headaches and I was hoping someone might know something about this. Last night I was starting to get a bad headache when I went to bed and then I woke up a few hours later with horrible, intense pain all through my head. Then my face, shoulders and neck went cold and went kind of numb and the pain from the headache started traveling down my spine as for as between my shoulderblades. The worst of it finally went away after a couple of hours.

I still have a headache today but not anywhere as bad as it was. I've been lucky (knock on wood) that I haven't had especially bad headaches lateley and never anything like this, so I have no idea what might have brought this on! I didn't eat anything unusual... I have been busier than usual lately and was extra tired last night. Anyway, if anyone has any idea what this might be, it would be a comfort to me to know! Thanks in advance!

Hi Friday, Do you know in what way your test was abnormal? I can't believe your doctor didn't discuss it with you! I'm actually just starting lyme treatment. It's been a very very long story up to this point, but basically I tested positive for acute lyme twice (IGM antibodies were positive but not enough IGG to be considered CDC positive). My general doctor ordered the tests and determined that he didn't think lyme was responsible for my symptoms (dizziness, fatigue, numbness, and so on). My sister and nephew are actually being treated for lyme and coinfections, so I know a bit more about it due to them and they suggested I see a lyme specialist. He was absolutely positive that lyme was causing my symptoms. It's pretty rare to have two positive test results with lyme, and false negative results are FAR more common.

If you find out that you just tested positive on one band (like 41 for example) I might not be terribly concerned because that can mean that the test detected any kind of spirochete (like strep for example) in your body... i.e., it's not as specific to lyme as other bands are. Sorry if I'm going to far into depth here! I've been so immersed in trying to learn more about all of this that it's hard to remember where it all began.

Essentially, I would say that getting a doctor's advice on what the test means would be important because lyme can definitely cause POTS symptoms in many cases, and the whole testing process for it is extremely confusing. Most doctors just look at the lab work (which is wrong almost half the time!) rather than considering a clinical diagnosis based on symptoms. I'd be happy to *try* to answer questions if you have any, though threre is so much that I don't know and so much that is disagreed upon by doctors. Someone on this site referred me to this lyme site once: http://www.ilads.org/ so that might be a good place to look too.

Hi Alex, I get just the kind of pain around my knees and lower legs that you described. I haven't really noticed if it comes after a spike in HR or BP for me, but I've noticed it on days when I'm especially tired and often at night. I've attributed it to pain from blood pooling, but I've never really been sure.

I actually just had a positive result for a lyme test, but I've had POTS symptoms for years before this, so I don't know if lyme could be the cause in my case. However, I have read of people who say they developed POTS due to Lyme. I don't know it there's really data on this--I've just seen people who say that's how it happened for them.

I have to be retested and then see my doctor again, so I'll definitely be asking questions about how this all figures into POTS!

just had blood volume testing done today. it took them an HOUR AND A HALF to get good veins.

Oh my gosh, how horrible! I'm sorry you had such a miserable experience!

That's interesting, Naomi, what the person said about CFS patient's blood being like that as well.

Thanks everyone for all of the tips. I'll definitely do a lot better next time having read this.

My heart rate didn't go up much on the TTT--it goes up more when I stand up in real life. But I guess that and my blood pressure dropping were still enough to diagnose me.

I took effexor (venlafaxine), which is an SNRI for years for depression. It was wonderful in alleviating my depression when I needed it, but I had extremely bad withdrawal from it if I even took it a bit late in the day. It did help with aches and pains and energy, but I don't know that I would go on it again just because it was such a long and difficult process to get off of it once I no longer needed it. If you have a knowledgeable doctor, you might ask about what medicines have bad withdrawal because I know many of us are very sensitive to medications and I think that made the withdrawal worse in my case. Good luck finding the best option for you!

Thanks everyone! All of those explantions make sense. I tend to drink a lot of water anyway, but I'll be sure to down as much as I can stand next time.

I've been having some labwork done lately, and I've had so much trouble getting my blood drawn and I wondered if others have these issues as well.

First of all, the nurses have a terrible time getting the needle into my vein. They say my vein "squirms" away from them so they end up poking around for quite some time. Then this last time I went, the girl found my vein finally, but she said my blood wouldn't come out! She said it would come for a bit and then it would stop. It took almost 10 minutes to fill 3 little tubes.

Of course I get faint after all this and I mentioned to the girl who drew my blood this last time that I have low blood pressure which makes me get faint (the short story anyway) and she said that's probably why my blood didn't come out. Has anyone else ever heard that or had an experience like that? I know it's common for people to get faint when getting their blood drawn and with POTS plus all the difficulty everyone seems to have with me, I've come to dread it. I need to start going to a lab where I can lay down while I have it drawn because I had to lay on the floor at this one once I got sick.

My sister used to get something like that and my mom called it sun poisoning. Here's a site that has some pictures of it: http://www.primehealthchannel.com/sun-poisoning-rash-pictures-symptoms-causes-and-treatment.html Does it look anything like that? I wonder if a medication is making you more sensitive than usual and that's what caused it? I hope it goes away!

Hi Katie, I'm sorry can't offer anything on why this happens, but I just wanted to say that I've experienced the same thing. It seems that any sort of incline or stairs have a much more extreme effect than they should. Like you described, I can increase the difficulty of my exercise and not have such a bad reaction on a level surface, but even taking it pretty easy on an incline brings on the POTS symptoms really badly.

That's great news that you're seeing so much improvement! Did you have arm weakness before or is that just a side effect you're having now? Thanks for reporting on what it helps with and where it isn't so great. I'm on midodrine right now and while it's helped some, it hasn't made as big a difference as I'd hoped, so it's good to have an idea what other options are and how people respond to them.

That's something I have a lot of, so I just wondered if it's a pretty normal POTS thing or if somehow your medication is overcompensating in some way...? Anyway, I'm very glad to hear it's more good news than bad!