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GregSims

Misery Loves Company...

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I guess that means I love you guys. I have been dealing with issues for about 8 years now, and haven't been able to figure out what exactly is wrong. However, after reading the post on this site for a few months, I think I have a better idea. I have been diagnosed with NCS after the most enjoyable 20 minutes on the tilt table, and the resulting three days in bed miserable, the Dr. told me I had NCS, wrote down and the wrong prescription and sent me on my way with a follow up apppointment the next year... bless his heart. You can imagine my delight when I go back to see him a year later and find out he is out of the office the day he scheduled the appointment with me - and the replacement Dr. tells me I had been on the wrong meds for a year.

Anyway, my journey getting to this point has been educationa if nothing else. I am going to list my symptoms and ask what you guys think?? I'm not asking for an internet diagnosis, but more or less asking for direction.

I have been to two sleep studies and get no level 3 or 4 sleep and only the occasional minute of level 5 sleep... up to three minutes a night.

I awake feeling completely stressed and covered in sweat... like needing to go wipe the sweat off with a towel.

If I stand for more than twenty minutes or so, I start getting clammy, then my legs get sweaty, then nauseaus.

If I am working in the yard, pulling weeds or anything that requires me to bend over, I get sick to my stomach. For example, I was working on my truck a few months back, getting up and down under the truck, and I got so sick, I ending up vomitting.

I have no tolerance for heat, and it doesn't have to be extreme heat. Even upper 70s to 80s will make me miserable. On the other hand, I can go camping in freezing whether and I am fine. My wife calls me her personal heater.

When I exert myself, I risk passing out or coming very close and I have to lay down with my feet up. If I let it go to far, I end up in bed for days feeling like I have the body aches that most people associate with the flu.

So, with all of these issues, I feel pretty worthless. My 12 year old son thinks I am a lazy old man. I am not sur my wife really understands sometimes either. I think she tries, but I think it gets old for her... I know it has gotten old for me. I have always been an out going, athetic guy. I grew up rock climbing, kayaking, and doing most anything outdoors. Life has changed for the worse, and I'm not like it.

I am currently taking 50 mg of Atenalol, 30 mg of Paxil, Trylipix. I typically take 2 benedryl, and 4 mgs of tizanadine to help me sleep. And, I take Prolosec daily for heartburn.

I am not sure of I have POTS, or if my symptons even fit. I would like to hear what you guys think??

Thanks!!

Greg Sims

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Greg,

I'm sorry that you are not feeling well. How long ago was your TTT done? Are you still seeing that doctor? Have you sought out a doctor that specializes in autonomic dysfunction?

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Welcome to the forum Greg. I am sorry to hear your symptomatic. Katybug is right, you may want to see someone who specializes in NCS or autonomic dysfunctions. You may also want to try some treatments such as salt loading, keeping hydrated well especially when outdoors with electrolyte drinks (G-series Gatorade), stooping instead of bending over, cooling clothing-vests, support hose/socks, small frequent meals high in protein low in fat, high potency multi-vitamin and Vitamin B which helps with energy and fatigue. There is alot of good treatment information on this site. Have you been checked for Thyroid problems or Vitamin D defeciency which can make you feel more tired? Hope you feel better soon.

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Greg,

I'm sorry that you are not feeling well. How long ago was your TTT done? Are you still seeing that doctor? Have you sought out a doctor that specializes in autonomic dysfunction?

Katybug,

I have good days and bad days. I have learned to limit myself and manage it to some extent. That being said, today is a relatively good day.

The TTT text was about 18 months ago. The Dr. just told me that I had NCS, and it wasn't curable. When I first looked it up online, I found out what was technically going on causing my events, but didn't understand that it was an "autonomic dysfunction". It wasn't until the last few months that my wife and I started started digging for more info and that is where I found this site. I had never heard the term "autonomic dysfunction" or dysautonomia... or POTS. My cardiologist was reccomended to me as the best Dr. in East Texas for my issues.

Obviously, I need to find a Dr. more familiar with my issues. Do any of you have any suggestions for a Dr. that could help?

Greg

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If you're in east Texas you might consider Vanderbilt in Tenn, or Birmingham Alabama or Dr. Goodman at Mayo in Scottsdale AZ. I think there's a doctor Suleman in Houston (?) who some have had good luck with also. If you do a search on this forum you should find some discussions about these places.

As far as having POTS, have you done a poorman's tilt table on yourself at home? That's where you lie down for 15 minutes or so, and check you HR and BP. Then stand by the edge of the bed for 10 minutes keeping movement to an absolute minimum and check your HR and BP every 1-2 minutes. Keep a log of these when you do them so you can show your doc. Or, I've also used my cell phone camera to record my HR monitor going up and up and up while I'm standing still as way to show my doc what happens. Unfortunately many of us find that we have "good" days on the days we see the docs so can't replicate the symptoms in their office.

By definition, POTS is an increase of 30 BPM or a HR exceeding 120 during the first 10 minutes of standing. So, if you do several PTTT at home, you should have a pretty good idea of whether or not you have POTS. That said, many of us find that there really isn't a correlation between what the HR/BP is doing on a given day and how symptomatic we are. For example, I may have a day where my BP is 88/72 and my HR is fairly high where I actually feel pretty good. Other days, I'm totally worthless functionally, but my HR and BP are relatively normal. So whether you have POTS, or NCS or both or some other version of dysautonomia, the reality is you get to join the hunt with the rest of us to try to figure out "why" and "now what do I do to try to make life tolerable." ;)

Welcome to the forum. Sorry you have a need to be here but you've found a great source of info.

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Thanks for the replies and suggestions. Over the years trying to figure out what was happening, I made several trips to the endocrinologist. I have had several thyroid test. The first result came back and the doctor said I was borderline, but it could have been due to stress... I am not sure what "borderline" meant, but my second and third test came out fine.

I will try the PTTT test over the next few days and see what happens. When I did the TTT, I didn't think it would affect me. I was OK for the first few minutes, then they sprayed something under my tongue. Within 2 minutes, my heart beat went from 60 beats per minute to 160, then down to 40 in just a few seconds as the attendent laid the bed down flat. He said that just a few more seconds and I would have crashed. I remembered everything going dark as I tried not to vomit. Then, everything started coming back to me as I was soaking wet with sweat. I felt like someone stomped on my chest and was in bed for a few days.

I guess I need figure out if I meet the definition of POTS before I seek out one o these Doctors that you guys suggested? Or, would these Doctors be the same specialists I should try to see even if I don't meet the POTS criteria? Are there different doctors for NCS?

Greg

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Greg,

Please don't believe that you can't get better! I know someone who has NCS she takes 1 pill a day and you would never know there is anything wrong with her. She has told me that as long as she takes her pill, she feels none of her symptoms. There are plenty of us on this forum, but, there are also plenty that have gotten better and moved on from the forum.

Here is a link to the physician list from this website. My best advice is to go see a doctor that specializes in autonomic dysfunction. They can clarify exactly what form you have and what the best treatment protocol will be. http://www.dinet.org/physicians.htm#United States

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This is a wonderful site to come to for support and medical information. Many times before I was diagnosed, the DINET site would pop up with the questions of the symptoms I was experiencing, and there is a wealth information here. I'm sorry you are having so many issues. If I were you, I would get a good sleep study done at a clinic that tests for more than just sleep apnea. It sounds like insomnia is a major problem for you, and those of us with dysautonomia have a 30% chance of having sleep apnea. It's amazing the difference it makes to get a good night sleep :) . I sleep with a Cpap machine, and it's made a world of difference for me. You can't live, if you don't get adequate REM sleep. Certainly, you should be able to find a Dr. in the Houston area that is familiar with Insomnia and Autonomic dysfunction. There are so many major medical centers there. If I were you, I would get your TTT repeated, with EKG, stress test and Echocardiogram by an Autonomic Nervous System Physician at a Major medical center in your area.

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Greg- You would see the same type of specialist in autonomic dysfunction whether you had POTS or NCS or both or.....

I agree with Kimbellgirl that you should follow up on that sleep study info. Did the doc not give you any help with that?

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Greg- You would see the same type of specialist in autonomic dysfunction whether you had POTS or NCS or both or.....

I agree with Kimbellgirl that you should follow up on that sleep study info. Did the doc not give you any help with that?

The Doctor at the sleep clinic never met with me. He had an assistant take all my information and set up the study. He was to meet with me to discuss the results, but had to be out of town. So, his assistant met with me and passed along the instructions. The Dr. wanted me to lose weight (50 lbs). He also wanted me to get on a good sleep medication and try relaxation techniques... clear your mind etc. Apparently during my 3 minutes of deep sleep, I quit breathing 3 times. He said that may be related to my weight. I am 6'3", 250 lbs. However, I have a fairly large frame. I never considered myself "overweight". But, I guess it never hurts to lose a few.

Obviously, I am not pleased with the help I am getting locally. During that sleep study, I took 20mgs of Ambien, 2 MG of Klonapin, 2 benedryl and 8 mgs of tizanadine just to force me to sleep. The assistant wrote down what I took, as it was their recommendation. - The Dr. then told me to get on a good med?!! I just wanted out of there. I am not sure the Dr. ever really looked at my file. His personal fee was over $2500 and he never even met with me.

I'm going to bang my head against the wall now after thinking about this again.

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Sorry to bring up bad memories there! But clearly you might do well to get another opinion on the sleep stuff. I seem to remember seeing all kinds of stuff in the press about how not sleeping makes you gain weight so even more ironic that you are having him tell you to lose weight but not doing anything to help you sleep. Yeesh!

In the past, I remember Firewatcher mentioning that there was a specific certification you should look for when you saw a sleep doc as it would indicate someone who should be able to deal with sleep issues aside from just the sleep apnea. You might want to PM her and see if she could give you that info so you might have better luck with the next doc.

Don't give up in your search for answers. I remember someone on here mentioning that they went thru something like 80 docs before getting one who was helpful so you may need to persevere a bit to get the help you need. On the plus side, you are male so you docs won't be as likely to IMMEDIATELY label you as neurotic or depressed most likely. LOL :rolleyes:

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I think you might have sleep apnea. I went for years without any sleep, and I am a new person with a Cpap :) Don't give up hope...By the way, you don't have to be over weight to have sleep apnea. I only weigh 105#...lol :rolleyes: . I went to UAB in Birmingham, Alabama. They check EKG, EEG, oxygen concentration, limb movements, breathing movements (chest and abdomen), and arousals, apnea, hypopneas, and types of apnea, obstructive or central nervous system apneas. I would highly recommend this group. Dr. Adams was my doctor. I did not sleep well the first night with Klonopin, so they gave me Ambien with the Klonopin the second night, and tried me out on different masks. The process was horrible when I think a total of 127 wires, and about 28 leads in all, but the result was worth it all! I still have dysautonomia, but I'm alot better with the Cpap and meds.

Edited by corina
medical advice

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Greg,

I second kimbalgirl on the sleep study. I am in Australia and went to a top sleep apnea clinic in a large major hospital with a very well known sleep specialist. I had a consultation with him and then another doc and then with him on the first day where they decided I definately needed a sleep study.

I was admitted overnight. Wired up like kimblegirl said and found to go from mild sleep apnea to severe levels when I go into deeper sleep.

I was admitted a second time so that they could work out what pressur air flow I needed for a CPAP machine.

On the nights I'm able to use my CPAP I do sleep better. Although I've had problems lately due to pressure urticaria (hives0 which makes it painful, no matter what I do to wear a mask). On those nights I sleep with a t-shirt on that has two sockfuls of tennis balls sewn into the back (someone else told me about that). Because it keeps me on my side I actually do sleep when I'm able to. (I'm post menopausal and have disruptive nights anyway -- not sure where menopause ends and pots begins but that wouldn't be your problem. LOL.

I was able to lose weight for a while but it made no discernable difference to my sleep apnea. Unfortunately I could not keep the weight off (I frigging tried believe me but some medications set me up for failure big time) so although weight could have been a cause of sleep apnea for me it turns out it was not.

I had no idea POTS existed until I was diagnosed with it nearly 6 years ago. I would not self diagnose but find the best dsy or pots specific specialist I could. I had two neurologists I saw for migraines for extended periods of time, neither of whom diagnosed me with pots. They didn't even think of it as far as I know. In my case it was a genius venous specialist who diagnosed POTS for me. My allergist recommended I see him. I nearly didn't go. So glad I did.

Blue

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