abbyw

Hi S-pot, Can I ask why you're making the switch? Thanks, Abby

Welcome and I hope that just as G-d sent you the right doctor before, you will be directed to the right doctors now to get you feeling better. Amazing that your doc had just seen a show on dysautonomia. Abby

Hi, So many posters here recommended Magnesium, that I decided to take some. I took 100mg. I had the most jittery day I had had in a long time. Coincidence? Or could it have been the magnesium? The magnesium was with Calcium Citrate and Vitamin D. Thanks!

With my medication, my dizziness is basically gone. I have noticed that I only get dizzy on days when I am really tired. Does this happen to anyone else? Any take on the connection?

I'm on Lexapro and have gained 6 kilograms in 6 months. I wouldn't mind if it stopped at this point, but I don't want to keep gaining each month! But it is helping my POTS so well, that I am afraid to go off. Does Wellbutrin work for POTS like Lexapro does?

Jen- I am so sorry to hear how bad you've been. I think its great that you exercise in bed and I think it can only help prevent your becoming deconditioned. I hope and pray that you and your doctors find a way to help you! I wanted to chime in, that with Jangle's inspiration, I have been walking vigorously for 20-25 minutes every day. It has been around three weeks now. I know that you think jogging is the key here, but I am definitely getting stronger. I should note, that while I am not jogging, I am walking fast enough that I am breathing heavy and sweating. The first day or two, I was wiped out for most of the day afterwards. Then, I moved on to an hour or so to recover, but functional throughout the day, with chest tightness on and off throughout the day. Now, that has mostly gone away. I guess that means it is time to take it up a notch . I am still on my meds, obviously, but I am hopeful that if I keep up a daily exercise routine, I will get the blood flow healthy enough to attempt weaning myself off. I am getting myself an elliptical in the hopes that I will be able to beat this thing. I know that we are talking months away, but I am being optimistic.

Hi Jangle, I'm so happy you posted this! I was inspired by your other post about exercise, and I started my own routine about two days ago. I started with VIGOROUS walking for 20 minutes. It took me quite a long time to recover from my walk, and I felt fatigued all day long. I felt good while I was walking, even when I worked up a sweat and was breathing quite heavily. But, I was really tired all day long. ( I do not wear a monitor to check my HR. I think it makes me obsess about how I am feeling instead of just living.) I had several questions: 1. Do you think this will work or do I need to actually jog or use an elliptical? 2. Will the fatigue improve with time? 3. As far as I know, those who improve with exercise, have to keep it up on a daily basis. I am having a hard time picturing myself as an exercise addict at 80 years old. Is there any evidence that we can actually cure ourselves with this or is it just symptom improvement on a daily basis? Thanks, Abby

Just wanted to express my appreciation for all the hard work that went into this.

Very interesting. I took several rounds of antibiotics for dental infections and for trying to treat IBS right before my POTS set in. The antibiotics made my IBS flare for months instead of curing it and as soon as I started healing from that, the dizzy spells, exercise intolerance, freezing chills and orthostatic intolerance started. I took Flagyl and Augmentin. You think that the antibiotics could have caused this? Abby

Hi Issie, I get that cold to the bone feeling every night as well. I even noticed that on nights that I don't get it, it happens as soon as I am falling asleep. Then, I wake up a few hours later totally overheated. I blame that on the SSRI. Abby

Hi, Sorry for the long delay. Thanks for all of your feedback. Lauren, I am taking Lexapro - 7.5mg which is pretty low. It took me around 8 weeks on that dose to feel "normal". I definitely feel better on the days that I make myself go out for a walk in the morning. Even just a few minutes. I am also thinking that 3 months is too short. I guess I just want to believe that this was a brief virus that just needed a little help and now it will all go away. Wishful thinking. I think I will give myself some more time before trying to change anything. Thanks for all the feedback, Abby

Thanks for your replies. Corina, I realized that I must have clicked twice when posting, but I didn't know how to delete one of them. Thanks for removing the extra one. Mandy, I would be interested in knowing if the natural ways have helped you enough that you feel OK without the meds. Our situations are so different, because the SSRI has helped me so much, but I would love to be off of them nonetheless. Thanks, Abby

Hi, I have been pretty stable on an SSRI for around 3 months now. Happy to say that I have no more dizziness, and no more anxiety like symptoms. I do tire very easily, but that's about it. I go for two 20 minute walks a day, and I am functioning pretty well. The SSRI causes sleep issues for me, and I think that a lot of my fatigue may be attributed to that. My question for all of you is: Do I say that the SSRI has helped me feel well and keep taking it forever, grateful that I have my life back to a large degree, or do I try to wean myself off in the hopes that I will stay better? Thanks for the input! Abby

Hi, An article in today's New York Times: http://well.blogs.nytimes.com/2012/04/09/antidepressants-can-raise-blood-pressure-during-pregnancy/?ref=health links SSRIs in pregnancy to high blood pressure. Not sure how this can be related to why SSRIs help some with POTS. Abby

Before I had POTS, I always had bad reactions to the novacaine shot, until I once asked my dentist if something he was giving me could make me feel shaky and jittery all day. He sais "You must be sensitive to epinephrine", from now on I'll give you the shots without it. Well, from that time on, I am always careful to tell any dentist that I am sensitive to epinephrine and I wouldn't say that going to the dentist is a pleasue , it never is, , but now it is just regular numbing and stuff, not jitteriness. The dentist did warn me that the other shots wear off more quickly and are not as effective, so sometimes you have to get more shots, but I think that is better than jittery all day. I would also ask them to lean you back as little as possible, I agree that the almost-up-side-down thing for an hour or so is not good when you sit up.

Hi, Weird, I know, but now, I think that anything weird that happens to me, is related to POTS. So my leg was itching, and I scratched it, and I started to bleed right away, as if my skin was really thin. Does this happen to anyone else and does it indicate which type of POTS I have? Thanks! Abby

Seconding DAni's post. The first 6-8 weeks were absolutely awful, major anxiety and "jumping out of my skin", and did I mention feeling awful? But now, as Dani said, I am much much better - not symptom free, but functioning on a daily basis.

I was only nauseous for the first few weeks. I ALWAYS take it on a full stomach. Are you making sure to do that?

Interesting, Issie, I have a patch of skin on my face that I was told is vitiligo. Between that and my hyperpigmentation from my last pregnancy, I am multicolored. I thought that the combo of my IBS, the POTS, and the recurrent tooth infections I had, plus my glands that have been swollen for months may indicate an autoimmune thing. The vitiligo would corroborate that, but my ANA came out negative. Can it still be autoimmune if my ANA is negative?

I have the same problem - but only at night when I am going to sleep. The rest of me can be fine, but my toes are frozen! With warm socks and under 2 blankets. The rest of me is too hot, so I am throwing the blankets off of the top half om body, while wrapping my feet in the blankets. Hard to fall asleep like that . As if I don't have enough sleeping issues..... I realize that this was not really a helpful post, just some commiseration.

Jangle, I don't know if it would help or not - before I had my POTS DX - they thought I was having vertigo and had me lie on the bed and sort of swing/move my head side to side like rolling with my eyes open - it will really bring on dizziness - but, it's supposed to help reset that imbalance thing. I can't say for sure it helped because I still have the dizziness - but, it's nothing now like it was then. So, maybe it helped. Just be careful because you might barf - when you do it - cause it will make you really dizzy and nauseous. Thus, the reason for lying down. Issie Issie - I think that they were trying to treat you for BBPV (if I am remembering the term correctly). My Dr. tried this maneuver on me when I first complained of dizziness. It is a problem where tiny particles in the inner ear are somehow "loose". Doing this maneuver supposedly jiggles them back into place. It obviously did nothing for me, as that was not my problem. But if your dizziness is coming from an inner ear problem, people report that it helps. You can do it on yourself - you can look up BBPV on youtube. Glad to hear you are doing better, Jangle! I hope it continues. If I don't have pooling and I get very cold, would that imply vasoconstricted? Abby

Hi, I have always had a bad reaction to alcohol - as far back as I can remember. Drinking even a small amount of wine would make me feel what I would now classify as pre-syncope, but then I just called it awful . I get really hot and dizzy and would just lie down on the floor wherever I was with my chest hurting and my head aching and sweating all over. I am now wondering if I was always pre-potsie. Other things I have always been sensitive to are novacaine shots at the dentist, which I now know contain epinephrine, and eating too much "sugary" sugar - chocolate, jelly beans, etc would always lead to a headache. Do you think these are related to my new condition or a coincidence? Thanks! Abby

I just want to say that the two of you are amazing. May G-d give you strength to persevere and may you both recover fully and quickly!

This ties in to my other post of yesterday, where I was looking for moral support. How do we know when to "suck it up" and pretend its not there, and when to listen to our bodies and take things easy? Sometimes the former works, and sometimes it leads to a crash.

Thanks for the understanding, guys! I think a lot of my frustration is the lack of clarity between the school of thought that says "Just live your life and don't think about your symptoms, that's how people say they got better" and the one that says "Pace yourself, don't overdo it or you will crash".