GENA...

[tammyokc]

Gena, in response to one of your posts...

"This is what causes me to fall in the pots hole - my heart going whacko and insomnia and anxiety. It seems like everyone else in the hole seems to get here more so because of fatigue, dizziness or weird pain issues...How many of you fall in the hole mainly due to issues with tachycardia, painful, forceful heartbeats, chest pain, insomnia, low BP and anxiety? I envy those who say they could sleep 24 hrs a day! I know the grass is always greener on the other side, right? I guess I just want to know that I'm not alone."

That is me to a TEE!!!!! I only dream of sleeping all day let alone one minute. I am exhausted all the time but I can never sleep and I am not exaggerating!! I never yawn, never can close my eyes, I'm just wired but never tired!!!

I take Ambien, have for 6 years and w/o it I would not sleep!!!! My insides are always so wired I feel like I'm having a panic attack 24/7!!!!!! I can have some calmer moments and then BAM, there goes my heart, the adrenaline, and the anxeity with no warning...

Just wanted to let you know you are not alone!!!

[RunnerGirl]

Gena and Tammy,

I, too, suffered very much in the way you both describe when I was at my worst. In fact, a severe bout with insomnia seemed to kick off my other symptoms - tachy, anxiety, waves of panic (totally physical in nature, not triggered by any emotional upset) and, in my case, high blood pressure episodes.

I have had about four bouts of major insomnia over the last five years, but the worst was one that lasted three weeks (I am not exaggerating - I wish I were!) I truly didn't sleep at all for nearly three weeks. I honestly thought I was going to die from lack of sleep. Ambien didn't work, nor did Ativan. I had to take a 1-week leave of absence from work because I couldn't function. (I was working at a very high pressure consulting firm doing mergers & acquisitons analysis and I simply couldn't focus.) Ultimately, I went to a psychiatrist (my first ever trip to see one) since my GP was at a loss (labs were normal). A short course of Xanax finally broke the cycle, but I feel this was a harbinger of my ANS troubles.

Happily, I am mostly normal these days and I haven't had such a bad episode in nearly three years. But my memory of how miserable and scared I was remains quite strong. I think I am among the 'grass in greener' crowd who would rather feel like sleeping all day than going days and weeks on end with no sleep!

Wishing us all sweet dreams!

RunnerGirl

[Gena]

Thanks Tammy and Runner Girl for sharing your stories with me. I've only gotten a few hours of sleep each night for the past several nights - and no matter how exhausted I am I can't fall back asleep. Ugggh! And the the insomina just sets up the cycle like you said of adding to the other symptoms - tachy, anxiety, more adrenaline. I have never had anxiety issues until POTs and I know it's so interwined with what's going on physically in my body - but I still can't help feeling like I should be able to get a handle on it - like I'm a weaker person for this. I can go for weeks, sometimes months in a good sleeping pattern with hardly any anxiety at all and symptoms seem to dissipate, but once the insomnia starts, I go down hill. Oh well, such is life - I think I'm getting used to it, but I still don't enjoy it!

Thanks again for letting me know I'm not alone!

Gena

[JLB]

How many of you fall in the hole mainly due to issues with tachycardia, painful, forceful heartbeats, chest pain, insomnia, low BP and anxiety?

Me, too. It's the heart symptoms that hurt my life the most. I've been living with the chest pain/hb irregularities again now for several days, and to tell you the truth, I'm getting pretty depressed.

[blackwolf]

i replied on the other string before seeing this one, i still don't sleep well and am running out of things to try to help me sleep. but i hope that a new doc can help. i'm starting with a internal med doc hopefully by early june and she said to run off info and send it in so she knows what i want to do/try.

i'm also tachy, rarely talk about it, i'm on toprol xl 50mgs, going to cut back to 25 mgs, see how it goes tomorrow nite, i take my pill at nite so i'm not so tachy(and palps) at nite while i try to sleep.

best of luck to all of us.

blackwolf

[tammyokc]

I hate drugs but desperate times call for desperate measures. I am thankful Ambien works for me but I tell ya, I wonder if I've taken it so long it's causing long term side effects (been on it six years). I am going to try the new drug out this week called Lunesta. I see my sleep doc on Friday, I'll let you guys know!

[Gena]

Tammy,

At one time ( I think a couple of years ago) my GP prescribed Ambien for me. I remember reading in the accompanying drug literature that it was not meant to be taken for longer than 10 days at a time. I don't believe they've tested the drug for long-term use. I could be wrong, but you may want to look it up online or call them.

I agree, I hate meds too. Usually the 1/2 pill of Klonopin before bed helps me fall asleep, but then whey I wake up to go to the bathroom, it's really hard for me to fall back asleep. Other nights, it's hard to fall asleep in the first place because I'm so wired, even when I do take a Klonopin. I never know what to expect sometimes. Makes it difficult getting through the next day at work though!!

Gena

[DancingLight]

Gena,

Yes, yes, yes! I am similar to you. I also sometimes have the same thoughts as you...I actually just emailed my doctor the other day and said it was a toss-up b/w the fatigue and agitation in terms of symptom intensity, but that the agitation is what really wears me down.

I haven't slept through the night in who knows how long, and I spend hours getting up peeing non-stop during the night too. Next step is Detrol.

In addition to all of the junk you describe...I get the shakes.

I'm not exaggerating when I say that the first 6 weeks post-surgery, I was in this state almost 24/7. I would wake up after a couple of hours during the night and then just shake all night long in addition to the intense pounding heart, etc.

I feel like my heart is going to jump out of my chest!

I feel these symptoms on some level all of the time, but post-surgery was a new baseline for weeks of no sleep at all. I could not turn my head without starting the whole cycle all over again and shaking and pounding and all of that.

Yup, it's pretty darn miserable...I hear you! So many nights I'm just lying there wishing I could just rest and not be so agitated.

So you're not alone, but I don't have any good answers! Sorry!

Tammy:::: I have also taken Ambien for 6 years. Although it hasn't been officially approved for long-term use, it is often used that way. I will be very interested to see how you like the Lunesta. Report back, k? One of my friends, her husband works for Sepracor so I have been hearing about it for a couple of years now from her. As for Xanax, I always used the generic. Maybe .5 was just too much? I never was able to take more than 1/2 of a .25. I no longer take it b/c it has lactose. As for the Ambien, I don't know about the withdrawal during the day...but I have had that same thought before since I feel so much better when I take it, but I think that is just b/c it is a sort of CNS suppresant and just chills out the whole system. Hope this helps...let us know about Lunesta.

Emily

[MomtoGiuliana]

Gena

Yes, me too. I have a problem with insomnia (and this is one thing the SSRI makes WORSE for me, even though it helps my other symptoms tremendously). The forceful heartbeats, the feelings of panic (especially when standing up), tachycardia--except I have a tendency towards high bp--although I also have lows--when I go through one of these episodes. When I was very sick, true sleep really eluded me. It was like I was on high alert 24 hours. I could "sleep" for several hours only, and then it seemed unrestful. BUT, I was ALSO very weak and had no energy.

What did help me was occasional Xanax and eventually the ssri--which changed the course of the illness/condition for me.

Katherine

[geneva]

Gena, I don't fall in the hole for all the reasons you stated but insomnia is one of the worst for me and if I go several days with really poor to no sleep, I am in trouble. All my symptoms get worse. Falling asleep can take hours for me and I feel like I have tried everything. Some nite's my system is just so wired it is maddening!

A 1/2 pill of Ativan will help me sleep at least 4-5 hours but I am resistant to take every nite. My husband and doctor think I am nuts not to take...and maybe I am but I just don't want my system to think it must have it to sleep.

I asked my (good) doctor a week ago about what he thought of me trying Ambien and he very clearly said "NO"! He would rather I use the Ativan than Ambien and he tells me every visit that I do not have the type personality to become addicted to Ativan and to TRY it nightly, but I just won't do it. Stubborn me!

[Gena]

Blackwolf - thanks for sharing. Let me know what new meds/directions you decide to take with your new doctor. Also, b/c I have low blood pressure, I can't tolerate a BB like toprol. I really wish I could sometimes though. Although I havent' tried it in combination with something like mestonin. That combination seems to work for others who have low BP, but I'm trying to stay relatively med free as long as possible. Some days I'm ready to give in and try anything and everything though!

Emily - You are a brave girl for getting through those post surgery days feeling like you did. I honestly don't know how you did it. I know you're STILL recovering. I had a run of several weeks last summer where I felt like that almost every night and I also had the shaking/tremors really bad like you mentioned, but during the day it would all subside and I could somewhat function. I also have to pee often during the night (not as much as I used to though). I still use a wheel chair to get to the bathroom just so I can avoid the extreme symptoms that the night brings. Really weird!

Katherine - I think I might get my RX for Xanax refilled and try it again. It can have a hypotensive effect, so I can't take too much of it. I only used it when I really needed it. Lately it seems like I've REALLY needed it , but I didn't have any to take! Oh well, I'll have get the doc to call it in for me.

Geneva - yes, I'm like you. I can take a 1/2 Klonopin and it will let me sleep for about 4-5 hours and then I wake up to pee and can't fall back asleep. I took Ambien a few years ago for about a month and it worked great, then I tried it again last year and it didn't work for me for some reason. It makes me feel really weird anyway.

When I wake up at night I also get this overwhelming feeling of frustration, rage and despair all at the same time. Anyone else feel like this? I get mad at myself for not being able to calm down and go through my normal relaxation, mind/body routines that normally work for me. I get part way through and then just have a mental/physical fit. My body seems out of control and then I start worrying and obsessing about every little thing going on in my life, which only adds to my physical symptoms. During the day, I'm cool as a cucumber, but when I go through periods of insomnia sometimes I think my mind and body are totally nuts! I know that a chemical imbalance occurs - I can feel it.

I've just started trying to see if maybe I'm low in serotonin, so I'm taking 5HTP which is the precursor of tryptophan, which increases serotonin levels in the brain. My mood is amazingly better and less stressed today. So I'll keep you posted on how this works out. Until then, feel free to keep sharing your pursuits of restful and calm nights. Hope we all can get some sleep this week. Sweet dreams!

[Sunfish]

Hi all -

Before my GB surgery (2 months ago) I had never had problems with insomnia. In fact I was such a hard sleeper that people would be alarmed in the difficulty/inability to wake me. But after surgery insomnia hit me like a brick...at first on & off but then to the degree that I wouldn't sleep AT ALL for over two nights regardless of exhaustion. And I was "good"...not allowing myself naps, no caffiene, etc...I didn't try any meds as there were/are so many other variables going on that I kept waiting for it to subside. One of my guesses was that perhaps my long-standing meds were affecting me differently after extreme weight loss of late, but who knows. For a month or more I didn't have more than one full night of decent sleep, but for me once I was asleep I was ok - it was the getting to sleep that was the problem. Currently I am SOOO thankful that I've had 5 nights of sleep in a row...knock on wood....so hopefully I'm on the upswing. My doc says that it's all typical of autonomic dysfunctions; says he sent some patients to a sleep specialist who was into autonomic stuff several years back (no longer in practice) & they all had different issues...everything from apnea to circadian rythm disturbances. So...I can feel you gals entirely in terms of the sleep...or rather lack there of...I would never have imagined the torture of it until recently. For better or for worse though I can't relate to the polyuria - I have the opposite issue to the extent that I can't go enough or at all even when I want to & have to catheterize...we need to find a happy medium, eh?

Good luck & sweet dreams,

:-)melissa