westernmass

Here's my update: I realized a few weeks ago that I wasnt feeling any better being on midodrine. I do like the energy from it but am sure there's a nonpharmaceutical way to get energy. Plus all the side effects from midodrine! So with Drs approval I have weaned myself off. I feel a bit better- symptoms the same but no mido-side effects. I saw an integrative dr this past week to get allergy testing- I want to see if there's anything at least aggravating this condition. He prescribed magnesium and licorice, which I am on day two of. I'm only taking about half of what he prescribed as I want to ease into it. Additionally I found a wonderful acupuncturist and herbalist and will try that route. She wants to let me adjust a bit to the new regimen but already knows some herbs shed like me to try. As I am considering traditional Chinese medicine as a career, I am so excited to be starting on this path! I am also adding meat (small amounts and gold quality hormone free etc) back into my diet, slowly and will be trying to eat warmer foods and liquids (since I tend to run cold). As possible, I will be adding gentle exercise in as well (previously I would hit the gym one week and be feeling great and then crash three days or a week later). I figured I will post this here and add any updates as they come in. If anyone has done a similar regimen or has experience or questions please comment.

So I know lots of us struggle through the heat and humidity of summer. It's been a bit cooler here this past week which is NICE! And has me craving fall. But then I started wondering... Will winter be the new summer? Do people find winter a struggle? Or is it easier in the cold than the heat? What are your experiences?

Strange! I've always had very visible veins-- all over me! Chest is most noticeable, but stomach and legs sometimes and inner arms. The blue highways comment is something I know all too well. I'm pretty pale, but have been noticing them more on my legs. The one that runs over my ankle creeps me out. Does anyone know if this is coincidence or related to dysautonomia?

I have pots and I don't have constant tachycardia. My resting heart rate is also very low like yours- lows 60s and even 50s sometimes. I hit around 100-110 on standing (results from Tilt table test). Have u been tttested? What have you tried so far? Good luck!

Thank you!

Thank you for that! I am finally getting allergy tested in a couple weeks. I am suspicious of gluten and dairy- was vegan for a while so know I could give up dairy again, but gluten... Not without being told to!

Yup, I've had shingles for two weeks. Really too bad because even last week and the week before I'd been feeling a bit better and even getting into that "maybe it's going away!" mentality, and this seems to be a setback. Other than the actually shingles symptoms (painful itching!!!!) I'm more fatigued, symptomy and most noticeably- physically weaker/tired. I was working out, happily last week, and now feel exhausted after going upstairs. Here's what's interesting to me- right before I got the shingles rash, actually the week before, I'd felt that tingling on my mouth that hinted at a cold sore getting ready ( sorry if that's tmi!) and started taking l-lysine, which works incredibly to prevent them from ever surfacing. I stopped taking it when my lips felt safe- and within two days got shingles. I know the viruses are related. I also know others on this board have suffered shingles (and I'm 25-- not 50!). Anyone have good treatments? Especially in this heat,I'm going insane! Because I went so late ( because I fear getting the hypochondriac label at the dr) he said its not worth starting an oral med, and gave mea steroid cream...doesn't seem to help the itching though. I am going to take some lysine and see if that helps?i have also been looking at -arginine rich foods to avoid,and nuts seeds and chocolate are in the top of the pack! Funny bc I've been CRAVING chocolate lately, so maybe that's been the trigger? Clearly my immune system is weakened...maybe just from dealing with pots? I've had the autoimmune blood work done, and while my ANA was positive twice, the rest of the tests ( sjorgrens, lupus, ra) were all normal or negative. Not sure if this is a rant or musing or if there's questions in there too thanks for listening and any feedback is appreciated.

(hugs) Having one of those days, myself, today. Stay strong

Interesting- I do get migraines. Isn't pots fun?! LOL

I tried searching but couldn't find anything. Recently it seems that my dizziness comes on while reading. Interesting bc this seems more "dizzy" than lightheaded. Comes on like a wave. The only other time I really feel this is sometimes while lying down- kind of a rush or wave of dizziness. Anyone else? Any idea why?

Hi all- I can't tell if my medicine actually helps me. I still experience all my symptoms, to some extent, on a daily basis. The only thing that makes me think it IS helping, is that I feel worse if I'm late on a dose, and better after taking it. But I don't know if my body is used to being on the med, and for that reason feel worse when I'm late and better soon after? Does anybody else feel this way? Anyone know if midodrine has any kind of withdrawal if you just stop taking it? Not going to do that, just want to explain the feeling. Hopefully that all made sense

We're you born with those conditions or did they develop?

I would think a lot of the meds we all take could cause weight gain. And those with severe nausea as a primary symptom would lose weight. I, so far, (six months into pots) have stayed the same-- though bloating is terrible! I even took a pregnancy test and didn't believe the scale that I haven't gained weight... Ugh!

Chest pain is one of my worst symptoms. It is often a pressure feeling- like I'm in a vice. Sometimes it is stabbing or almost electrical type pain- this is the worst and very scary. I also get the adrenaline-rush type of feeling I think you mentioned. The pain is always and only on the left side. It usually comes and goes all day- definitely worse when my other symptoms are worse.

Ditto on bloating and weight gain. There are lots of healthy foods with high salt content (like celery even) that is naturally occurring- I choose that over dumping salt on everything.

Thanks for all the help everyone! Funny to have several Rachel's in one thread- I'm one two Just to clarify-- I know seeking medical advise is not permitted and I didn't mean to seem that I was. I do call my dr before trying anything- but am sick of it (lol) and am looking for general guidelines, personal experiences, etc. I appreciate all the help

Hi all I know I should check with the docs- but I'm sick of bugging them On my midodrine bottle it says something along the lines of this med may interact with OTC things and call your dr. I also recall reading there are things that are very unsafe to take while on midodrine. Does anyone have some examples or a list of things known to be unsafe to take? I'd like to have a better idea of whAt to avoid. Thanks!

OK- don't know how to edit my post I'd also like to ask about what kinds of "alternative" therapies/treatments people have tried?? I just read about "chelation" to get rid of heavy metals from the body-- it claims to help revers neurological disorders? What all have you tried, other than the standard pharmaceuticals and fluid/salt etc. ??

Hi all, I've tried searching for similar topics but couldn't find anything that was quite what I'm asking. I also remember a post in the near-past where there was a big list of meds/supplements/etc and what they do to help pots-- couldn't find that one either. What kind of supplements do you all take? Things specifically for pots, and for general health? I would like to incorporate some into my regimen (with dr's approval), but since my doc's haven't mentioned any kind of supplements/vitamins to me, I figured I'd compile a list here and go in armed with info before I start

I haven't felt 100% normal since POTS hit in February this year. Like many others, I do have "good" days and "bad" days, but I haven't had a symptom-free day since this all started. I don't really think I have "episodes", as I have heard others describe...my bad days are kind of all-around crappy, and on my good days I'll have a few minor moments of lightheadedness, chest pain and/or nausea. POTS never lets me forget it's here, really. I am currently on medication (midodrine) but not sure how effective it is.

Nope, never been on Acutane.

Haven't taken my temp at all, but I do go from cold (with chills, pain/numbness in hands/feet and goosebumps even) to feeling hot and flushing in face. Weird. With the hot flashes I am reminded of my mother in menopause... But I'm only 25!

Yes I agree! I had been studying (in my free time, not school) nutrition and specifically the vegan diet and it's health effects. I know many diseases are greatly improved/healed with a specific diet-- generally heavy on organic vegetables fruit and whole grains-- whether that's vegan, g-free or whatever-- avoiding the standard American diet of highly processed food proves to be helpful pretty much always. I've been curious about diet relating to pots-- Ive seen to avoid alcohol, dairy, and large meals. I believe some have said to avoid refined flours/sugar? I was vegan when pots hit, now eat dairy and eggs but would like to wean myself off and go back to vegan. Has anyone looked into diet and nutrition for pots? Has anyone noticed on their own what may help/hurt? I definitely notice I need small meals and that large ones make me feel worse.

Interesting... I'm also on midodrine and upped my dose about a month ago... I see the cardio weds I will bring this up.

Does arms and legs falling asleep signal blood pooling? Mine have been falling asleep more often lately. I was brushing it off as unrelated so now I am curious