yogini

It seems like most of you get IVs regularly, which does not make things look good. I'm surprised IVs aren't used more often. I know there are some risks with the PICC line, but not sure about just getting a regular IV? I agree that it's only a band aid, but sometimes with this condition, a band aid can be a big help...

I think wrinkled fingertips is a symptom of POTS - could be low BP or blood volume. I definitely had this a lot when I first got sick.

Corina, that's a bummer -- you'd think we were asking for narcotics and not just salt water! My cardio is also hesitant -- he is nice but doesn't know much about POTS. I'm actually just looking to get one or two treaments of this for the time being. I know it helped me in the hospital and especially after I had my first TTT. Thanks, Katherine. Does your specialist administer it, or do you have to go to a hospital? Thanks, Amy. It's a bummer that it took so long to get it, but glad it's helped you. I won't need a PICC line, just saline through my arm. But I don't have much energy right now. If my doctors give me a hard time tomorrow, I will probably give up on this idea.

aw, thanks!

Is IV saline something you need a prescription for? For those of you that use it as needed or regularly, which dr gives you your IV? My cardio does not administer it in his office. (He also said he thinks it won't help, but I disagree and know it at least won't hurt.) He suggested I try the ER, which I will do, but only if my tachy is out of control. (I can only imagine how they would react if I showed up just to ask for saline!) I am planning to call my GP first thing to see if I can get some from him, although I am worried he won't have it either. Would love to hear what any of you do. Thanks, Rita

I believe pacers are used more for another form of dysautonomia called NCS - although even then, they are not too common. I agree that it's pretty unusual for POTS, except for people with failed ablations.

I agree that anti-depressants are way overprescribed. The oversubscription aspect wouldn't deter me personally, b/c they are used (off-label) to treat POTS and are known to be effective. I am only mentioning this because my dr had suggested I take Paxil a couple of years ago. I didn't try it then because there is an adjustment period which I didn't want to deal with. I'm currently thinking about trying an SSRI as a next step -- although I am hoping no next step is required, LOL. And if the side effect of taking an SSRI would be to help my state of mind, I would consider it an added benefit. I do realize that meds are a personal decision and would never suggest that anyone take SSRIs (or any other med) that they are not comfortable with. I think it's important for each of us to find our own way to deal with the physical and emotional aspects of this horrible condition...no easy answers here. -Rita

I have definitely learned my lesson. I was actually trying to do some work this week, but my therapist convinced me to take the week off. Don't know why I couldn't think of that one myself. Hopefully will see some improvement after 4 days' rest. I've missed the forum. Although my family and friends are wonderful, they tend to either underreact or overreact. It is so great that everyone here understands exactly where I'm coming from.

I think when my POTS symptoms are acting up, it physcially affects my emotions. I feel unhappy and mean and I am convinced that this is related to whatever is going wrong with my body. There have been a few times where these feelings have literally vanished along with my symptoms shortly after taking my meds. I didn't realize that betas caused depression. In addition, they make us lethargic and not feel like doing anything. This doesn't help our mental state any. I will say that I was on a higher dose of betas for a long time, and the side effects do wear off over time. This is something to consider. I have read that betas are only effective for 50% of us. There are also lots of other meds out there - each one has its adjustment period issues, so it's never an easy decision. One thought would be to try an SSRI which could help with both POTS and depression. Although I've been having a bad flare up right now, in the past I have been able to function at a pretty high level. My life is still a big struggle. I find myself comparing myself to healthy people and envying that their lives are so much easier and that there are many things that are easy to them which I can't do and may never be able to do. We all have our way of pushing through these moments - faith, family, positive actions, indulgence. In the end, though, these things only help so much and I think it's natural to feel some depression. I think that if you repress these emotions, they will just build and fester. Have you considered seeing a therapist? I have been working with somone for the past 18 months and it has really helped me to cope. Feel better soon.

Tea, you are so right! Sometimes I do get warning signs, but this time there were none, so I just kept going. My body gave out the very day I finished the project, so I must have been hanging on by a thread. I will take everyone's advice and try to get some rest. Will keep you posted...unfortunately it'll probably be a few weeks for this to sort itself out.

Hi, I definitely benefit from short periods of bedrest, and I'd venture that many/most others here do too...as do healthy folks when they are tired or under the weather. In fact when I first got sick I was able to work mostly because I spent nearly every evening and weekend totally resting. From what I understand, the danger with too much bedrest is that your body gets used to being supine; it seems unlikely that this would happen in a couple of days or if you otherwise spent sufficient time out of bed. If it's improving your symptoms and not making them worse, I'd keep doing it.

Lauren, It's great to hear that your Lyme treatment is working. I look forward to hearing your stories of improvement! -Rita

Thanks guys for your responses. I definitely felt better after reading them. As suspected, my doc didn't have too much to offer. He drew blood, did an EKG and Echo (both of which were normal) and declined to give me saline. He suggested I see the local dysautonomia specialist, who many here on the board know is not-so-helpful. When I hinted at this, my doc told me that he would work with me with other drugs if needed...but we both agreed to wait and to see if things settle on their own. At least I have a backup plan, tho. I've had a lot of triggers over the past few weeks - working hard, stopping birth control, a plane trip, a cold, my period - so I am hoping things will settle down once I am back in my routine. I'm still feeling lightheaded and little spurts of tachy at the same time, which is why I upped my atenolol dose. I feel so uncomfortable with the tachy that I can't do anything other than lie down I need the extra BB to function right now, but I do agree it may be part of the reason I'm feeling more tired and lightheaded. It's the chicken and the egg scenario. I remember living like this daily for a year or two after developing POTS, and I can't bear to go back to that...so just keeping my fingers xed. Thanks again for your support.

Melissa, Sorry you're dealing with this. Thinking of you. Get well soon! -Rita

Hi everyone, I haven't posted in several months. I've been sticking to my routine and managing my POTS very well for the past couple of years. Part of the reason I haven't been able to post in so long was because I was working really hard in Dec. -- really around the clock. I had not worked those kinds of hrs since right before I'd gotten sick (no coincidence). Anyway the whole time I was working hard, I was doing well and not really feeling many POTS symptoms other than fatigue and insomnia. Then all of sudden on my way to the airport to visit my parents, I started feeling dizzy. I wound up having a full-blown POTS attack in the middle of the airport. I had to lie down in the middle of the airport and they called an ambulance. (BTW, I had the best experience with the airport police and EMT workers. They were so helpful and took me seriously.) I'm a bit freaked out, b/c I haven't had to call an ambulance in over 2 years. And usually when I have a bout of tachycardia, I feel bad for a few days and then things are back to "normal". After this incident, I literally slept for 4 days. But now it has been 2 weeks. I've increased my dose of beta blocker and I am still feeling awful - tachycardia, dizziness and fatigue...and just that general sense of BLAH that you can all relate to. I am heading to the dr's this afternoon, to get some blood work and hopefully I can convince him to give me some IV fluids. I realize now how important it is to maintain the balance - how my POTS is mostly under control and how much stress is really a factor for me. I really regret pushing too hard and hope that it has not screwed me up permanently. -Rita

Hi Amy, No advice here, but just wanted to say congrats on the pregnancy. When are you due? My sister is almost 9 months along. She had terrible nausea during her first trimester, but it has been smooth sailing after that (though she doesn't have POTS). I hope you'll feel better as time passes. -Rita

Hi Lauren, I seem to be the queen of low grade fevers. It does depend on the person, but I know that before POTS, my basline was exactly 98.6. I often find myself a little higher than that these days, and I've definitely become sensitive to even small changes in my temp. I've read up on this a few times, and my understanding is that anything less than 101 is low grade, and that it's also normal for body temp to vary up to 2 degrees during the day. Temp usually increases a little after meals and later in the day. The numbers you report could be normal fluctuations, but with our bodies, who knows! Good luck with the Lyme doctor. Hope you get some answers! -Rita

Hi Amber, Sorry you're feeling frustrated. Most of us (if not all of us!) can relate to feeling frustrated and not making progress with the drs appointments. I would definitely get a second opinion, especially if your doctor doesn't specialize in dysautonomia. Maybe he is thinking about an ablation, which generally doesn't help POTS. You can read about it on the DINET page - or print it out and bring it to your doctor. And remember: you don't have to agree to any surgical procedure that you're not comfortable with. -Rita

I was very scared at first, but I've had 2 of them since getting POTS, and seemed to do OK. Getting the flu with POTS would be horrible, so I'll be getting one again this year. I've seen an autonomic specialist in NYC in the past, who reccommends it to all of his patients. I think I've also read that Dr. Grubb recommends it. This has come up a few times before, so you may want to do a search. Here is a link to one of the prior posts: http://dinet.ipbhost.com/index.php?showtopic=4004&st=0

I did check a few of the drug info websites, which didn't seem to say anything one way or another. Maybe it's just me but the beta blocker does seem to help. Amy, I think you're right - my body probably overheats due to excess adrenaline, which the BB stops. I guess I'll just have to live with it for now...

I get this all the time too, especially close to my period. I have been doing breathing exercises which have helped a lot. They don't necessarily help in the moment, but I think since I have started doing the exercises, the feeling of being constantly wired has lessened. I usually don't take supplements, but sometimes I also take valerian root which seems to relax me, as does my beta blocker.

Sorry you're having such a rough time. The best kind of doctor to see is usually one who has experience in treating dysautonomia. This could be a cardiologist, electrophysiologist or neurologist. There is a good list on the DINET main page. If there isn't a good POTS doctor near you, then you could try for a GP or any other doctor that listens and is willing to learn. You may also want to search the forum, b/c this question has come up a lot before.

I had another low grade fever yesterday and was feeling pretty POTSy. Normally I'd have ignored it, but I had to go somewhere last night. When Tylenol didn't work (which it usually does), I tried taking a little extra beta blocker even though my HR was normal. A couple of hrs later, I magically felt better and the fever had disappeared. I think this explains my low grade fevers in the afternoon, because I take my BB in the morning and it must wear off by the end of the day. I have also noticed more low grade fevers since cutting my BB dose in half. They must somehow help to regulate my body temperature. I tried researching this on the web, but didn't find anything. I was wondering whether any of you knew about this or have noticed that betas help? -Rita

I think many POTS patients are able to fly, and even though it's a struggle it's not dangerous for most of us. But if you have severe POTS and your doc specifically says not to fly, I wouldn't. I think it's a lot safer to be on the ground, b/c elevation makes POTS sypmtoms worse, and it's easier to get to a hospital from the ground. Trains and buses are a pain to take by yourself, though, and worse when you have luggage. I do hope that you can find a friend or a volunteer to go with you.

Linda, Where are you going to be in NY? If it's a place I'm familiar with, maybe I can help you brainstorm...