Introduction And Insomnia

[jenniferlynne76]

Hi everyone. I've been perusing the forum for a few weeks now and decided it was finally time to introduce myself.

My name is Jennifer (my friends call me Jen) and I am 36 years old. I live in Cleveland, Ohio with my husband. I was diagnosed with POTS on November 12, 2012. In September, I developed what seemed to be a salivary glad infection, but quickly found myself accumulating symptoms: high blood pressure, horrible acid reflux, aching knees and feet ... all of which, of course, my doctor determined were just flukes and weren't related. I was referred to a gastroenterologist and on the day I had my abdominal ultrasound and consult, I found myself with far more trouble on my hands. My husband was away at class, and though stressed about the lingering medical issues, I went to take a shower -- usually one of my favorite, most relaxing ways to round out a day. While showering, my pulse began to race uncontrollably. I got out of the shower and took my pulse: 148 ... 152. I was worried. I felt light headed and carefully got dressed before making the decision to call 911. Between that and knowing my BP had been an uncharacteristically high 150/100 at the GI doc's office that day, I truly feared I was having a heart attack. When the ambulance arrived, my pulse had come down some, but my BP was still 160/110 and they decided to take me to the ER. That night, theyran a CT scan of my abdomen (still thinking this was stomach related) and admitted me for observation.

Ultimately I stayed in the hospital for three days. They did an echocardiogram, ran countless tests, and couldn't figure out what was going on. They called it sinus tachycardia, put me on a beta blocker and sent me home with a 30 day event monitor, assuming there was still probably something going on with my stomach.

In the 30 days that followed, I had an endoscopy which came back completely clean, visited a knee specialist who saw I had arthritis and nothing more, a foot specialist who said I had perineal tendonitis and suggested I see a rheumatologist, and I began developing severe sleep problems. It started with some hypnogogic hallucinations which I chocked up to being on the beta blocker. A bit of magnesium seemed to help that, but I found myself waking up with increasingly numb/sleeping arms. First the right...then both the right and left. Within days I noticed my hands were tingling during the days. Then my feet. Soon it was everything. I prayed with all of my might that this was just some cruel side effect of the beta blocker.

During my follow up with my cardiac electrophysiologist, everything checked out fine. My BP was extremely low, and she decided to stop the beta blocker. EKG was fine, and I didn't need the event monitor once..though I still couldn't explain these adrenaline-like surges I'd have some days...mostly in the evenings around/during bed time. She told me that if the tingling persisted beyond 10 days it likely wasn't a side effect of the beta blocker and that I should seek additional counsel.

10 days went by. It didn't stop.

I went to a rheumatologist who ran every test under the sun, all of which came back negative, and my family doctor decided to run an MRI of my brain to rule out MS, which was becoming an increasing concern. The MRI was clean. Convinced that there was something neurological going on that we were missing, I made an appointment for myself with the Cleveland Clinic.

I met with the man who is now my neurologist on November 8, 2012. I told him about my infection in early September, the gastrointestinal issues, my hospitalization for sinus tachycardia, the chronic pain in my shoulder, knee, foot ... I told him about my worsening insomnia and the peripheral neuropathy that was rocking my world. He told me he thought they were all related. I was stunned. He scheduled a tilt table test, some additional blood work and a CT scan for me.

The blood work checked out just fine. The CT scan did as well. But on Monday, November 12 my doctor called me and told me I had POTS. During the last five minutes of my tilt table test, I nearly passed out, my BP dropping to 73/32 and my pulse raising to 84. He explained that I had dysautonomia and suddenly it all made sense.

I'm now on 60mg of Mestinon three times daily, and do all of the normal things POTS patients do -- drink additional fluids, especially those with electrolytes, I have increased my salt intake, etc. I am thankful that my symptoms aren't as debilitating as they could be. I still have digestive issues, dry eyes, and the peripheral neuropathy is still very much there (especially at night when one or both arms constantly fall asleep, adding to my insomnia issues) and yes, the insomnia. It's crippling me.

My doctor has tried every drug he could think to try in the last three weeks: Ativan, Valium, Restoril, Atarax, Doxepin ... nothing works. Some days I have more trouble than others falling asleep (and on those nights, I may be awake until 4 a.m.). Others, I fall asleep quickly but wake just as quickly, as if startled. It will happen two or three times and then I'm wide awake until who-knows-when. On the "best" nights, eventually I fall asleep, experiencing these weird cycles where I fall asleep, dream, wake up, fall asleep, dream, wake up in 25 to 45 minute blocks. It's like there's something wrong with my wiring now when it comes to sleep. It's awful. I have always had impeccable sleep hygiene, and in my 36 years was completely healthy with no sleep issues whatsoever. I'm at my wits end. I'm going for a sleep consult on Friday, and am hoping that will lead to a sleep study that will, God willing, lead to some additional answers. Even my neurologist is at a loss at this point. But he recognizes the importance of sleep in managing my symptoms (which are definitely worse on the days when I cannot rest).

I the meantime, I'm seeing a massage therapist weekly. I tried a reiki session, and I begin acupuncture on Friday. Yes, sometimes I feel like I'm grasping at straws. But sometimes that's the only thing that keeps me going.

My immune system is shot at the moment, no doubt due to the lack of sleep, and I am experiencing my first cold with POTS. Not fun, at all. I've never enjoyed being sick (who does?) but this takes things to a whole new level. Oh, and I was officially diagnosed with dry eye last week, too, so I started on steroid drops and Restasis for that.

I feel like I'm mourning the old, healthy version of myself. I worry that this will never get better. That it might, God forbid, get worse. I am willing to do anything to get better; to at least manage the symptoms I have, and keep them in check. Now I just have to figure out what those things are.

I look forward to getting to know you all and to learning from your personal experiences. I realize I have much to learn, and hope I can also be a positive light in your lives as well. I feel better knowing that I'm not in this alone -- and that at 2 a.m. when I'm sitting at my dining room table, while my husband sleeps in the basement (because that's where he's been since this craziness started), crying, there is someone out there who feels me. Who gets me. And who knows it's going to be okay.

[Christy_D]

Welcome to the forum Jen. My son(17) is in the same boat. His sleep cycle has been messed up on and off for the last couple of years. He did a sleep study and they found he has restless leg syndrome. No meds really help him either. Even on a very high dose of doxepin (175 mg-as one doctor said..enough to take down an elephant) doesn't knock him out. He is still on 100 mg doxepin, for his POTS and MCAS issues. He goes from no sleep for a period of time to sleeping constantly.

It is great that at least you live in Cleveland where some of the good specialists are located. We traveled to Cleveland 5 times from Oct 2009 to August 2010 before finding a local doctor.

This is a great forum and the people on here are so helpful.

Christy

[jenniferlynne76]

Thanks so much for the welcome, Christy. And, boy, can I relate to your son. It is amazing that a med in a quantity that should, as you say, take down an elephant, does nothing for us. The human body is a baffling thing for sure!

I tell you, I've never been so grateful to live in Cleveland as I have these last few months. I often joked with folks when i moved here that if I ever got sick, this is where I'd want to be. Well, what do you know?! ;-) Seriously, I do feel extremely blessed to have such amazing care just down the street. I was surprised initially to learn how many of my neurologist's patients travelled from out of town to see him, but, more and more, I'm beginning to understand why.

Thanks again for reaching out,

Jen

[Katybug]

Welcome. Sorry to meet you this way but I hope we can help you find some information that helps you.

[Traceyf]

Hi Jen

I feel like you have written my story. Mine however has been going on for over 15 years to get to this point. I also can relate to the loneliness that comes with this disease. Even though my husband has been wonderful throughout all of this, it is hard for me to put together and I am living it. Because there seems to be so few doctors who deal with this the medical profession becomes increasingly frustrating. You were diagnosed quickly. I have a brother who went through the battle of the diagnoses before me, so I am blessed that I have him to talk to, ask questions, and as sick as he is...get reassurance from.

Tracey

[puppylove]

Hiya! I can so relate to the insomnia thing. It's one of my worst issues right now, and I haven't found anything that helps yet either. I also jerk awake as I'm dozing off and I think it has to do with adrenalin.

[corina]

Hi Jen, welcome to the forum!I have trouble sleeping too. I have two "patterns". One is where I sleep and sleep and sleep (have to set my alarm clock and force myself out of bed) and one where I fall asleep quite easily, wake up after about 2 or 3 minutes and am awake for hours. This continues throughout the night. In between there are some more or less normal night s now and then. I find it so strange that eventhough my nights can be really short I make it out of bed and do kind of okay (okay for me I mean) and when I sleep and sleep and sleep I have difficulty getting up.

[MomtoGiuliana]

Welcome Jen. I am glad you found DINET. I hope you soon find relief for your sleep issues-- and that you find support you need here.

[k&ajsmom]

Hi Jennifer,

So sorry to hear what your going through and your def. not alone. This forum is wonderful!! I def. can feel your pain and I am still greiving this condition and the "old" me. I have barely been able to leave the house in the last couple of months, but slowly I am seeing a light, even if its only a glimmer. I have cryed countless days over this hopeless feeling and the days I dont cry Im just too tired to. There's a lot of hope reading all the testomonies on here and with knowledge is power. It sounds like you have a great medical team and doing a lot of positive things.

I can relate to the insomnia completely. At first I couldnt get enough sleep, could barely make it through dinner. Then for a while I couldnt go to sleep till wee hours in the morning of the next day and only stayed asleep for about 4 hours. Now I can go to sleep at a normal time but I only sleep for about 2 hours at a time and at around 2 or 3 am thats it and Im wide awake all day, though dreadfully fatigued. Under another post"afraid to sleep" theirs a lot of bedtime symptoms mentioned that make me think there is a connection to the insomnia. I had a sleep study done when I stayed at the hospital ,still awaiting the results from that. Im thinking alot of us have some sort of apnea going on. Good luck with yours and hope you find some answers...=))

[jenniferlynne76]

Thank you everyone for the welcome and for sharing your stories. It is so helpful to know I am not alone! I really wish someone would spend more time looking into the connections between sleep issues and dysautonomia. It sounds like something that plagues so many of us!

I had my sleep consult on Friday. The doc didn't seem to have any great ideas. The one thing she was willing to admit is that she's inclined to agree with my neurologist and that it is probably tied to the dysautonomia. She was also well aware of the connection between POTS and apnea. So, not surprisingly, she scheduled me for a sleep study. Unfortunately, however, they can't get me in until Januray 13. OY. It's going to be a long month. Then, after the study she wants me to meet with a sleep psychologist (anyone else do this? I mean, I get that they don't want us on meds if we don't have to be, but I really believe there's something physical happening in my body that's keeping me from sleeping...not something mental). And then I don't follow up with the sleep doc again until February 13. Wow....like I said, long haul.

She wasn't happy that I'd been taking various benzos to help me sleep (which is sort of ironic, since my neurologist sees them as an inevitable part of helping most POTS patients with sleep and anxiety/adrenaline issues) and she finally gave in and wrote me a script for 5mg of Ambien to be used "rarely." We'll, I don't think that will be a problem, because the stuff doesn't work for me! Last night I ended up taking 1mg of Ativan on top of the 5mg of Ambien after two and a half hours of laying there tossing and turning. *sigh* I just wish I could find something that would work consistently.

Anyway, sounds like its going to be a long couple of months on the sleep front. Hopefully the sleep study next month will yeild some results. And it sounds like I may need to make sure my neurologist and sleep doc are on the same page (since I don't think the sleep doc understands the prevalence of sleep issues in folks like us).

K&ajsmom, let us know the results of your sleep study when you get them. Truly hope their yeild some insightful information for you!

[abbyw]

Hi Jen,

Welcome! I'm so sorry that you have had such a nightmare of a time. I'm glad you found this forum. It has been my lifeline for the last year or so. I am actually doing much better than when I started, but I come here often just to feel that someone in the world understands what I am going through.

I had a sudden onset (as far as I could tell) in November of 2011. (I was actually on a 2 day vacation with my husband while my office changed locations, so I know the exact date.) I was one of those people who never could exercise too much, and I was always sensitive to wine, caffeine, and novacaine at the dentist, but otherwise, I was a pretty normal person. I had developed really bad IBS around a year prior, and I was not doing well. I could hardly eat anything, and I started having near fainting episodes whenever my stomach was about to attack. At the same time as the IBS started to improve, this started. (I still think that the extreme IBS did something to start this, but noone has ever heard of that.)

Then, one fine day, I got these repeated bouts of dizziness. I didn't think much of it, then when we went out for a walk, (we usually did 25 minutes or so), I HAD to go back after 10 minutes, and it took me over an hour of lying down to recover. I felt like I was going to pass out. From that day, I had repeated episodes of near-fainting, one fainting episode, and repeated dizziness. I was freezing all the time, no matter how much I bundled up. I felt like I was jittery on the inside, almost wired. I went to my doctor who told me that I had anxiety. "I haven't been stressed about anything" - I say. Well, they didn't know what else it was, so it must be psychological. I went to another doctor. Low blood pressure and anxiety. I said "I had anxiety years ago - this is not that" - but they said anxiety.

A friend tells me about orthostatic hypotension. I test my BP lying down and then standing. I noticed that my BP doesn't change much, but my pulse shoots up drastically. I googled it and found a link in wikipedia to POTs. It described me PRECISELY. I went back to my doctor, and showed her the link. She couldn't believe it. She had never heard of POTS, but she agreed that it sounded right. She checked my pulse again in her office, with the same results.

Based on info I found on this site, I started taking an SSRI. It took 6 very long weeks of increased jitteriness, increased temperature fluctuations, and feeling like death, but then I turned the corner.

I did some research, trying to find a specialist. I live overseas, and there is only one dysautonomia specialist listed on this site, or anywhere that I could find in my part of the world. Well, that was a major disappointment. I drove over an hour,and paid a fortune. When he heard that I have 7 kids and work - he said "that must be extremely stressful". Then, when he heard that I found out about POTS online he said "Oh. on Dr. Google?!? " He then did a poor man's TTT, while I was on meds, and told me that he didn't see such a huge jump in my pulse. He suggested that I not think about how I feel so much.

Well, I did not go back to him. Meanwhile, I feel about 95% better on the SNRI I am taking now. I am functioning, working, and being a mom/wife again.

I am still not happy that this happened, and I wish that I could understand how it happened and if there was an underlying cause that I should be treating. I certainly hope that one day it will go away. But in the meantime, I am very grateful for everything I have gained from this site.

This site has helped me to do my research, so that I can go to my doctor with as much information as possible. (She is willing to learn.)

This site has helped me feel that I am not alone, and that someone else has been there.

The people here are very knowledgeable and encouraging.

I hope that you will find all of the answers you need to get the right treatment to help you feel well again.

In terms of the insomnia, the only thing I can tell you is that I suffered from insomnia while on Lexapro and it was horrible. The benzos did help me, though.

I did find, that otherwise, as soon as my symptoms calmed down, my sleep got better too. I hope you sleep well sooner than you think!

Sorry for the rant, I just needed the therapy right now....

Abby

[jenniferlynne76]

Abby,

Thank you for sharing your story. And, trust me, I think we all understand the need to vent from time to time! I think the hardest thing for all of us is not having answers. I keep telling folks that if I just had the answers then I'd know what we need to do to develop the right course of treatment. (Or at least that's how it all works in my mind!) LOL :-)

Last night was another rough one for me. I went to bed at 10:30 p.m. and even with taking a couple of Restoril I was wide awake, heart pounding at midnight. I sure as heck wish I knew why that happens to us. And let me tell you, as someone who has slept like baby all of her life, until 2 months ago, I just don't think I'm ever going to get used to this. *sigh*

I decided to call my neurologist this morning to update him on the sleep consult appointment last Friday. Something about it just didn't sit right with me. I just worry that the sleep specialist doesn't understand the physical nature of a dysautonomic's sleep problems. The fact that she was SO opposed to medication and kept telling me that I'd "either sleep or I wouldn't" just rubbed me the wrong way. What I wanted to say was, "If I didn't work full time, if I didn't have a household to run, if I didn't have to function every morning, then yes...it would just be fine." :-P But how are we supposed to function without adequate sleep? As so many of us have pointed out, our symptoms (mine included) are SO much worse when I don't sleep well. So we'll see what the neurologist says. If nothing else I guess I'll feel better if I can update him on the time table for things and see if what she's suggesting makes sense to him. If not, maybe he can talk with her/make sure we're all on the same page. I just don't want to waste two months barking up the wrong tree, you know?

Thanks to all of you for letting me rant, as well! :-)

-Jen

[Chaos]

I can sooo relate to the sleep issue! While I suspect I've had POTS symptoms for years, I became "incapacitated" by it when I got an infection/ mono in 2009. I remember running a fever, coming home, taking some tylenol and thinking I just needed to go to sleep and I'd be better in the morning. But, I never could get the switch in my brain to "flip" into sleep mode that night....or for the next 3 years. Kept telling docs for 2 years that I couldn't sleep, wouldn't fall asleep until 4 am or later and even then couldn't sleep more than 3 hours at a time.

FINALLY, last year my POTS neuro decided that sleep was an issue that needed to be addressed so prescribed some ambien which helped some. When he put me on Topomax for migraines though, it seems to have really changed my sleep problems around. Haven't had to use Ambien for months and usually get about 5-6 hours a night now. Still don't fall asleep until 2 am or later. POTS hasn't been cured by sleeping better certainly, but my overall situation is improved with better sleep.

I did have a sleep study but didn't find it particularly helpful. Basically it showed that I slept less than 3 hours, had a 51% sleep efficacy rate and had severely delayed sleep onset (even with 2 doses of ambien). BUT- since I didn't have significant sleep apnea- it was termed A NORMAL SLEEP STUDY and therefore there was no need for further follow-up with the sleep doc. Thanks a lot. I could have told them all that without it costing $4,000.

[jenniferlynne76]

Ha! Chaos, I totally get what you're saying. And I suspect my sleep study results will be similar.

There's is clearly something that gets messed up in the wiring of our brains when we become "dysautonomic." I can't help but wonder why this isn't an issue that's given greater attention/study with the goal of better understanding *what* that something is. I mean, when patients, such as ourselves are taking enough of a drug to technically knock out a whole family and it's doing NOTHING for us, it becomes clear that something is amiss!

I will say that last night I FINALLY slept -- I mean, really SLEPT -- for the first time in over two months. The reason? 2 mg of Klonopin at bedtime. I went to bed at 10 p.m., was asleep by 10:30 p.m. and didn't wake up at all until 5:30 a.m. WOW. I am keeping my fingers crossed very tightly that this may finally be the answer my neurologist and I have been looking for. I think I will probably try 1 mg instead of the full 2 tonight (I'm still feeling some of the after effects this morning, though nothing too horrible...just a little more "zen" than normal.) But if this is all it takes to get me a decent night of sleep, sign me up. I'll deal with coming off of the drug and the potential withdrawal issues later.

I actually have this forum to thank for giving me the idea to try the Klonopin. When I talked to my neurologist yesterday and we decided to go ahead and trying something else (again), he initially suggested Xanax. But having read practically every post on this forum about sleep and sleep problems, I noticed that Klonopin kept coming up a lot -- and seemed to be one of the drugs people were having success with. So I suggested we try that instead. My doc was 100% on board, saying it was definitely a good one to try and promptly called the script in. So THANK YOU -- all of you -- for sharing your experiences. Without them I wouldn't have thought to ask my doc for this. And, while I can't call it a miracle cure yet, it has more potential than any of the other seven meds I've tried in the last month!

I'll keep you all posted. And please keep me posted, too! Learning from each other is so important when dealing with this huge (and frustrating) insomnia issue in our lives.

[looneymom]

Welcome! Has anyone checked iron and vitamin D levels yet? My son has POTS and has had sleeping issues. So many things in our system seems to get messed up with POTS. If your body is deficient, it can't make melatonin. This is a hormone that your body makes naturally and helps you fall alseep. Your body has to be able to asorb amino acids to help make this hormone.

[FarmerAmy]

Hi Jen,

I'm sorry you're having a rough time. I feel like somebody needs to write a beginner's guide to POTS! I feel like you get your tilt table test results, then the doctor says GFL! (one of my husband's favorites--"Good effing luck!")

I have had mild POTS symptoms for 20+ years (without knowing what was going on). In November 2011 my health took a nosedive and I have been pretty non-functional since then.

It is such a drastic change when POTS hits you, but I feel like most of us don't get adequate support along with a POTS diagnosis. If you were in a car wreck and became paralyzed, I think you would get all kinds of help in dealing with your life change. Developing POTS can be almost as drastic, but I feel like you're left out in the cold wondering what hit you.

A few things I have learned in the past year:

--I had to get used to the long periods of waiting between appointments, treatments, etc. Like "try this new med and get back to me in a few months." Really?!?

--I learned that it is best for me to deal with one or two doctors at a time. At first I was so desperate that I spent all my time (any money!) going to various health care providers. Then I didn't know what to do when my cardiologist's advice conflicted with that of my acupuncturist. I still have a long list of potential health care providers to try, but I plan to try them one at a time.

--Likewise, I try only one new treatment at a time. If I start 3 new things and I feel a lot better--or worse--I don't know which of the 3 things has changed the way I feel.

--I also try not to get my hopes up too much for the next appointment I have or the new med I am going to try. I've had so many doctors tell me that a certain med should make a huge difference in the way I feel. So far, nothing has. I've lowered my expectations and thankfully this has gotten me off the emotional rollercoaster of hoping the next thing will finally make me feel better, only to be let down. Again.

--I had to come to terms with how drastically my life had changed. I was freaking out, to put it mildly, when I first became ill. How was I supposed to continue living my life if I couldn't stand up?!? The answer was that I had to make big changes and really slow down. It was not easy and I still struggle with it every day. But I have learned that for now, this is the new "normal" for me.

POTS is a poorly-understood chronic illness and to put it simply, it *****. I am still hopeful that I will recover, but I try not to spend too much time and energy (and money!!) trying to find the silver bullet. It is exhausting and makes you crazy!

Best wishes to you,

Amy

[jenniferlynne76]

Looneymom, they were tested in September during a regular course of blood work and they checked out fine then. That said, I just had a whole bunch more blood work run, so we'll see what happens after that.

Amy, great advice. Thank you so much for sharing. I think your point about dealing with one doctor at a time is particularly valid. I'm most inclined to trust my neurologist at this stage of the game, so I find myself running everything by him. I've also started seeing an integrative medicine practitioner (which is how I got hooked up with the acupuncturist), but even the things she suggests all get run by my neurologist. Since he's the only one who really seems to get POTS, I feel safer that way.

And boy are you right about the frustration that comes with having to wait eons between appointments, trying different treatments,etc. Though, like you, I think I'm finally getting a little bit better on that front. This whole thing is a serious exercise in patience, to be sure. (Which, if I'm honest, is something I could use some help with anyway...maybe this is the universe's way of finally getting me to slow down and chill out?? ;-) )

I tried the Klonopin again last night before bed. It wasn't quite as drastic of an effect as it was the first night (took me longer to fall asleep for sure), and I don't think I slept quite as deeply. That said, I did still sleep ....which is still an improvement over where we've been previously. So I'm still keeping my fingers crossed and hoping it continues to give me some relief/much needed rest.

Please do keep your suggestions and experiences coming. I appreciate them more than you know.

All the best,

Jen