Sufilizard

I got tired of the 2-hour drive to my acupuncturist, so I just sent him a voodoo doll Actually, I've never tried it, but I know a lot of legitimate studies have shown acupuncture has some real benefits. I don't know if any of the studies have looked at POTS though.

Not Zoloft, but I've had chronic insomnia off-and-on for years. I recently switched back to Citalopram and the insomnia came back with a vengeance. For me, the only thing that seems to help is Benadryl, for some reason - even prescription sleep pills don't help me. My problem is usually not falling asleep, but staying asleep. I wake up at 2 or 3 in the morning and can't get back to sleep even though I'm exhausted. The down side to taking Benadryl for me is that I feel kind of foggy all day, but I still function better than when I've gone a week with very little sleep.

I started several years ago on Lexapro (family doctor was treating chronic insomnia/panic attacks at the time - pre-POTS-diagnosis). Eventually I switched to Citalopram because I changed jobs and coverage for Lexapro got real expensive. That seemed to do fine for a while, but after a while the insomnia returned. I switched to Nortryptaline for a couple of years, but some of the other side-effects became too bad, so my doctor switched back to Citalopram a couple of months ago. This time the side-effects were horrendous, splitting headaches, nausea for at least a week and terrible insomnia that continues to this day. It does seem to help some of my POTS symptoms though - including anxiety and depression that may or may not be POTS-related. Like many pharmaceuticals, it's a trade-off. And from what I can tell from others on this forum, we all seem to respond differently, so you kind of have to try it out and see what it does.

My symptoms come and go, but I'm able to live a fairly normal life. For me, finding a regular exercise routine helps a lot. I started out years ago doing a pretty easy 15-minute yoga routine every morning - my wife got me a video called A.M. Yoga. I still try to do it almost every day and I find even on bad days I can usually handle that. I've also started doing just 10 push-ups after my yoga. The push-ups started about a year ago. The weird thing is, sometimes I can knock out 10 without much trouble at all and other days I have to really struggle to finish the last couple. It seems like in "normal" people if you did it that consistently your ability to do them wouldn't fluctuate so radically. For a while I was even running, but I found the same thing - some days I could run several miles, while other days I couldn't even finish one mile. There didn't seem to be any rhyme or reason to it. Now, I try to just walk a mile or two as many days as I can. For me, I can always muster up the strength to walk (I realize that's not the case for everyone) even if I don't always have the time. I've also added some supplements. A couple of other things that have seemed to help me out a lot - at least until my recent change in medication threw me out-of-whack: I started taking Vitamin D3 supplements and Fish Oil a year or two ago. (2,000-4,000 mg D3, 3,000 mg Fish Oil daily). This had a tremendous benefit on my health. I used to get really, really sick at least 4-5 times a year. No matter what was going around, I would get it worse and it would last longer in me than everyone else I knew. That stopped almost completely when I started the supplements (I also started using a neti pot most nights before bed). Since that time, I've only been really sick once and it lasted a normal (if not shorter than average) length of time. Other than that one time, I've felt like I was coming down with something a couple of times but never really came down with it - just a day or so of feeling a little off. Meanwhile others in my family, including my wife, who tends to be very healthy, came down with pretty severe illness. At work, I eat a pretty crappy diet, but we raise our own grass-fed beef and free-range eggs, so I do get pretty healthy food at home. I suspect if I was more careful about my diet all the time, I would probably be able to improve even more. I currently take one prescription medicine: an anti-depressant - currently Citalopram 20mg, recently switched from Nortriptyline. This change seems to have thrown me for a loop especially returning me to severe insomnia, but until this switch I was feeling pretty darn good for most of two years. I would never had said I was cured or even completely symptom-free, but I would be happy to return to that level. We all seem to be different on here, but that's my story - I hope it can give you some optimism that even if you aren't "cured" you can get to the point of living a pretty normal life.

I haven't had this recently, but I remember having this as a kid/teenager. It happened quite frequently (not daily, but probably a couple of times a month). I used ice because it was so uncomfortable. That would have been in the late 70s/early 80s so I never really figured out what it was.

Thanks for all the info everyone. I'm trying to sort through a long history of possibly related symptoms. I'm fairly lucky in that my symptoms have been as debilitating for me as they seem to be for a lot of people, but it still makes life a lot harder than it ought to be.

I'm new here, but so far, I've found people really helpful. I'm trying to wrap my brain around what's going on with me. I had a Tilt Table Test about two years ago that indicated a possibility of POTS, but I've had symptoms for about as long as I can remember. Anxiety and Panic Disorder were brought up in about '96 or '97, but I think those symptoms could have been related to Dysautonomia. Anyway, last week someone here suggested that I look into Mast Cell issues. I'm curious how people would recommend I follow up on that - or what symptoms I should look for to decide if that is something I should pursue. I've got one of those high-deductible insurance plans through work, so basically everything is out-of-pocket for me until I've hit my really high deductible. Therefore, I don't tend to do more than I absolutely need to medically. I often deal with terrible insomnia, but Benadryl is the only thing that seems to help some - even prescription sleep meds haven't prevented the middle-of-the-night waking and Melatonin seems to have no effect whatsoever. With Benadryl, I still wake up in the middle of the night, but I seem to get back to sleep sooner. Unfortunately it makes getting up in the morning much harder. Before I started on SSRIs, I had multiple "panic attacks" a day every day. In my early 20's, I was a heavy drinker, but by my late 20s I discovered that sometimes even having a single beer would suddenly cause me to feel ill - and it almost always causes flushing. I hardly ever drink at all any more, but even now, I never know if I'll be able to drink a whole beer or feel really ill after the first couple of sips. I think I read somewhere about a relation between alcohol and Mast Cell Activation.

Thanks for the responses people. I'm sure everyone here realizes how frustrating this can be to deal with.

Thanks issie, I'm just wrapping my head around POTS, but I've seen a couple of comments today about Mast Cell and it seemed like something I should learn more about... this is like peeling an onion :-(

issie, what are H1s and H2s?

Thanks kimbellgirl, I'm reluctant to get too many drugs flowing through my body, but I need to find something to help me sleep. So far Benadryl seems to help a little, but I'm still only getting 4-5 hours of sleep, which is better than 1-3, but over time it still takes it's toll. I tried Melatonin, but it did absolutely nothing to help me sleep.

Here's what I would add from my own experience: One of my worst symptoms is the insomnia (and lack of deep sleep as mentioned by Tachy above). I also have trouble with temperature regulation. I'm very intolerant of being too hot or too cold. Does anyone else have itchy ears? That's a weird one and it only started after I first started on antidepressants, but it's continued through many med changes.My #3 brings up another question I often wonder about my own symptoms. Could some of these symptoms be side-effects of medications?

I get the weird hearing anomalies too. I'm only recently putting all these symptoms together as POTS-related. I ended up in ER years ago with what seemed like a heart attack. It turned out my heart was fine, but heart rate was extremely high. Later visits to various cardiac specialists showed an incredibly low resting heart rate, but no cardiac problems. Eventually I chalked it up to panic disorder and continued to live with these "attacks" multiple times a day, every day for years. A few years ago a doctor put me on Lexapro for my horrible insomnia and that seemed to also end the "panic attacks" (reinforcing the idea of panic/anxiety). But I'm beginning to realize that for me the panic/anxiety has a very chemical root, not psychological - although psychological factors can certainly exacerbate the problems. I've had trouble figuring out how to describe the "weird" feelings too. I've used the word "depersonalization" before, but I'm not sure if what I'm experiencing fits the clinical definition of it. I know it gets much worse when I have to squat or bend over a lot. Just picking up sticks in the yard for 30 minutes - or worse, pulling weeds - leads to me feeling "off" the rest of the day. It's almost flu-like, but I know it's not from any viral source.

This is my first post too. Though I've been checking out this site for a couple of years now. I had a TTT and it looks like I have POTS, but I've had a real hard time with meds. For me, one of the worst problems I have is terrible, chronic insomnia (early waking, I don't usually have trouble falling asleep) which then makes all my symptoms get worse when I go a few weeks without sleep. The first time (pre POTS diagnosis) Lexapro was the first thing that helped insomnia. But over time, meds seem to lose their effectiveness so I end up trying a new one. Recently, I was actually in a pretty good place for a while with Nortryptaline, but some of the other side-effects were causing problems so my doctor switched me to Citalopram, after a week of terrible anxiety, nausea, insomnia, etc. I seem to have tapered off to just the terrible insomnia. In the past I've tried all kinds of things for insomnia to no effect - including prescription sleep drugs like Ambien, etc. I still wake up about 2 a.m. mentally wired, but physically dead. (I wonder if this is the adrenaline thing, I've read about on these forums) I haven't seen any kind of specialist yet, I'm just dealing with my family doctor. I seem to have trouble getting anyone to take the POTS thing very seriously - including my wife who is a nurse who does TTT, though she had her co-worker do mine. Has anybody else had any success stopping the middle-of-the-night-adrenaline-rushes-for-no-reason?