E Soskis

You sound normal to me! I try to keep going one day at a time - I don't look too far ahead because, well....I don't want to get depressed! I think a lot of the "fear" comes from too much projection - thinking about how bad the future COULD be.....I decided I prefer to deal with the here and now - not with what MIGHT happen. Yes - I also grieve the loss of my "old" life. It stinks that I can't do the simple things I used to do - I just refuse to wallow in grief and what used to be. In my past, I took way too much for granted - the one positive thing about this disease is...I have a new appreciation of life and the little things. I have way more empathy for people who have limitations. I have a much greater capacity to tolerate things that used to really bug me. It comes down to realizing what my real priorities are in this life: God, family, friends, and the importance of loving others more than myself. My future comes one day at a time and it is great!

I don't know what I would do without midodrine. My BP is so low, I have to take midodrine just to keep it up to 100 systolic. I never experienced rebound bradycardia from midodrine. I have a pacemaker due to the type of dysautonomia I have - it dropped my rate to a steady 20-40 and I just couldn't function. The pacemaker is set at a continuous rate of 72 and now, I can stay pretty alert and functional. Midodrine keeps my blood pressure up enough to clear the "fog" - my co-workers know when I need more midodrine because I get that far off look, stare in space, and generally begin to wilt. I don't know what type of dysautonomia you have "Potsie" - it sounds like POTS but, there are certainly other disorders that cause the tachy/brady syndrome. I assume you have had full work-up and ruled out other disorders? - Beta Blockers have a paradoxical effect with dysautonomia and may be a stabilizer for your duo syndrome - your cardiologist should have a list of drugs that help to stabilize this syndrome and be able to coach you about the side-effects and what to expect.

I wish I had all the answers - I feel your pain because I have to work also and if I call in too much, I could be fired. It is so hard to work when you feel awful yet, we have to keep going.....Is there someone you can talk to? Where I work, we have an employee assistance program with counselors on campus that will listen and offer advice and direction. Is there someone in your MD office that would help you sort out the type of specialist you need to see? I made friends with the staff in my MD office and it sure helps when I need extra direction and assistance. I know that worrying about retirement is a biggie - I would think about going out on disability retirement - do you have a disability insurance plan? - would your physicians assist you with social security disability? It seems like in a city as big as New York, there should be physicians familiar with dysautonomia, POTS, and the like. Are there members in the forum that reside in New York and can assist Lynnie with names of physicians and places to go for assistance??????

I have Spanx also as well as other type of compression garments (whatever I can get on sale) - I used to wear them a lot but, in the past few months I quit because they are just so darn tight. Now, my gastroparesis and abdominal pooling is out of control and I'm swelling like a watermelon - I put my spanx back on and poof! - instantly felt better so, guess I'll be back in the spanx for awhile - can't live with them....can't live without them....

My antibody titers are high enough that I don't need the chicken pox vaccine - besides, I had a great case of it when I was 5 years old. My MD did convince me to take the shingles vaccine this past winter. I had such an untoward reaction to it that I ended up in the hospital with raging fevers, bone-racking chills, and IV antibiotics trying to keep my infusaport and central lines from getting infected. I'll never take the shingles vaccine again! It was only after the vaccination that I learned it was an attenuated live virus - so, if you have autoimmune dysautonomia, better think long and hard about taking any vaccine with live virus components.......

Lynnie: sorry you are going through all of this - I know you feel terrible and stressed-out. I think we all walk a thin line with our health - it does not take much to tip the balance. I know that chronic pain can completely wear a person down. Your shoulder pain needs to be addressed in some manner: whether it is with a medication that does not cause problems with glaucoma, or biofeedback, or some combination of the two. Not sleeping also magnifies existing problems. When I don't sleep well, I can barely function the next day. When I experience a stretch of poor sleeping, I feel like a zombie. The combination of not sleeping and pain can certainly cause blood pressure issues. I'm not surprised that your BP is all over the place - the stress alone can cause it to rocket into orbit and your illness can cause it to drop like a lead balloon. Your body doesn't quite know what to do with itself at this point. Does your type of dysautonomia cause pupil dilatation? My pupils stay dilated - even in the bright light. It seems to me that your ophthalmologist would want to deal with your glaucoma ASAP since you have dysautonomia. I really am sorry this is all building up with you - I do know what it feels like to be completely overwhelmed, scared, and insecure. It's not a good feeling and it is terribly distressing. If you can get your eyes fixed, your pain managed, and begin to sleep better, I would guess that things would become manageable again. I hope you can work all of this out soon - blessings to you and prayers for peace and relief.

I "faint" when I don't have enough blood pressure - nothing else rattles me - I've worked in ER for over 30 years and am pretty tough.....

Oh thank you, thank you! I thought I was the only one with the "burning" issue - In the past few months I have experienced very similar episodes - My skin and bones feel like they are on fire with little pinpinprick sensations all up and down my arms and legs - quite uncomfortable. They don't last very long but, for the few minutes they do, I feel like I am going to crawl right out of my skin! I thought it had to be some type of weird menopause symptom (even though I had a hysterectomy years ago) but, now it appears from what I am reading that it is another whacky symptom of dysautonomia -

I wonder if you have a combination of things: migraine and autonomic headache at the same time....Just guessing though - The dysautonomia headaches I get start deep within the "center" of my brain and radiate outward - also have bad neck pain at times with it. I have constant "ringing" or "buzzing' in my ears from the dysautonomia and it is way worse at night - probably because it is a quieter environment at night so I "hear" more....might want to try not lying flat - dysautonomia causes lying flat to aggravate symptoms - try a wedge pillow and elevate your head 30-degrees or so - may help....sorry about all of your headaches and symptoms - real nuisance isn't it? - you may be "flaring" these past couple of weeks......

Interesting how different and varied we all wax and wane. I don't have POTs but, have AAG (autoimmune) - for the past 2 years, I have been receiving plasma exchanges to remove the "bad" antibodies. I receive them about every 2-3 weeks (roughly the life-cycle of antibody production) - I can tell when the antibodies begin to build up as the time draws closer for an exchange. The dysautonomia begins to worsen and the symptoms increase dramatically. I still have episodes of flaring - even when it is not time for an exchange. I've tried to pin-point the triggers and have only identified three things so far: fatigue (tired, stressed-out); sugar and fats. Simple sugars (desserts, sodas) and foods high in fat seem to make things so much worse. So for me, the answer is to avoid getting too tired, cut out the simple sweets, and stick to a lower fat diet. I don't know what I'll do when the plasma exchanges quit working - there really isn't any other treatment. I've done the immune globulin thing and can't do that anymore......so, .as the song says...."one day at a time sweet Jesus - that's all I'm asking from you!" I don't think there is any age limit to dysautonomia and related conditions. In fact, I think most of us have had symptoms for many years before properly diagnosed. This forum has a wide-range of ages that contribute. Autonomic dysfunction is actually a condition of aging - and can be exacerbated by certain medical conditions associated with age: example, diabetes. For a physician to say someone is "too old" to contract the disease is not logical. Barbara Walters was "too old" to contract chicken pox, yet, she managed to come down with it. A child is "too young" to have cancer yet, just look at the children afflicted with the various cancers.

Absolutely! There are certain sounds and pitches that I cannot tolerate. I have a family member who uses a back massager that props up into the back of the chair. When it is turned on, the vibration not only extends to the back but, out into the room - I guess it is the frequency or pitch of the noise but, it makes my head explode. I almost feel like I'm going to be nauseated and vomit just from the sound. I usually have to get up and leave the room. I've also noticed that when it is generally quiet in the room and an unexpected loud noise lets loose (telephone ringing, dog barking, someone drops something, etc), my startle reflex is so hyper that I feel like I am crawling out of my skin. I jump and my heart rhythm will become irregular for a few moments to minutes - very disconcerting..... Of course, these are all home noises. I actually tolerate work noises better. I used to work in a busy, chaotic ER with all types of loud sounds and screams. For the past few years, I'm sequestered in an office with few staff and little noise. It is much calmer, quieter, and I enjoy not having the stress of distress all around me. The only drawback is that the office is directly outside part of the mainetnance department and they have to run generators, test engines, crank up tractors and various other mechanical sounds periodically during the day. These are disturbing and I have been known to go out and beg them to stop or move elsewhere than right outside my door!

What do I do on bad days? Hum....I guess it depends upon how "bad" the day really is. If the crash is a result of another illness (stomach bug, cold/flu...) then I know I have to go into the ER for evaluation and IV fluids, IV antibiotics, etc.... If the crash is simply because my disease is flaring a bit, then I can usually stay upright long enough to get to work to my desk where I can prop my feet up and work at the computer, chomp on midodrine, and gulp fluids like mad. If my blood pressure simply insists on dropping into the toilet, then I have to stay down in my recliner and prop my legs up, chomp on midodrine, guzzle fluids, and pray that the episode will pass quickly as possible.

Oh yeah! Dysautonomia can disrupt the nerves that innervate the bladder and cause chronic urine retention. I've had this for years. Chronic urinary retention leads to bladder infections and kidney infections. I can usually catch the infection in the bladder stage before it progresses to the kidney. I've had urinary catheters at times and have had to self-cath a few times. The bladder is dystonic, big, and floppy - holds a lot of urine but, no sensation of having to urinate. I have held over 1 liter in my bladder many times and never knew I was "full". Sometimes the only symptom is a vague abdominal discomfort and some distention (swelling). I have learned to simply go to the bathroom several times a day even when I don't feel the "urge" - it helps prevent the infections......

Dysautonomia messes with our ability to sweat therefore, we are unable to cool down very well. I can tolerate heat for a couple of minutes then, I have to find somewhere cooler to hang out. I do not attend a function where there is no shade or no place cool to sit. I pretty much nix the outdoors in the summer - it is just plain too hot!

At the hospital, you will need to go to medical records and sign a release form for the documents you want. You will have to show identification and it will probably cost you per page of record. Some hospitals are able to provide you the record right away and some require you to come back after a certain time to pick them up. Your best bet is to call the medical records department and ask what the policy is for obtaining a copy of a record. My primary physician always provides me with a copy of my lab work for my files - he does not require me to sign anything and simply hands it to me at the beginning of the visit - I don't think that is the usual for most doctors but, I have never had trouble obtaining lab results from my physician office.

My body is wired to wake up between 5-6am - no matter when I go to bed - so, if I stay up too late, then I have a sleep deficit and suffer all the next day from it - it can even bring on a flare that takes days from which to recover - I dislike being such a creature of habit but, it is out of necessity......

Hoo boy....I understand completely - It is so frustrating to know that you are viewed as an anxiety-ridden "histrionic" female. The one specialty psychiatrist I was sent to spent at least an hour attempting to explain how the mind fools the body into thinking it is sick, blah blah blah....what a waste of time! I have decided not to ever re-visit a health professional that attempts to dismiss me as "crazy" or full of "anxiety". By-the-way....the nerves that regulate the cardiovascular system come from the Autonomic Nervous System - so, it is quite logical that when there is dysfunction of the autonomic nervous system, the cardiovascular system will go haywire - hence, the arrhythmias.....duh...duh...duh... Cardiac dysrhythmias are one of the classic signs of dysautonomia...... Sounds histrionic to me!....oops my bad.....

My best guess is that is a circulatory issue or an oxygenation issue. Nails are a window to circulation status - if when lightly pinched, the nail blanches then returns to full color within 2 seconds or so, the circulation is thought to be pretty normal. If the nail does not return to full color or takes >3 seconds, then the circulation is impaired. A nail that is blue or "cyanotic" indicates poor circulation or poor oxygen status. If you have any respiratory disease or compromise, the nails can take on a bluish tinge. If this happens only when you stand up, it is probably due to the sudden decrease in circulation to your lower legs causing the nails to turn bluish in color. Perhaps you need to stand up more slowly or in gradual stages after awakening. Try sitting up slowly in bed and gradually lowering your legs. This will help your heart and cardiovascular system to equilibrate more evenly. I have Raynaud's phenomena from my dysautonomia - this causes poor circulation to hands and feet and sometimes, my nails and mucus membranes turn a bluish tinge or just pale out to a very white color.

Bless you dear man! Bless you for loving your wife, standing by her, and assisting her in her quest to identify her disorder. She is better not only because she is determined, but also because she has such wonderful uplifting support. Thank you for sharing with us - it is so refreshing to know there are still "real" men out there!

Dreams and Memories often mesh together at night. The mind reaches back to certain key memories then weaves the dream around what you felt and how you responded in the memory. Dreams are often a form of communication - taking strong memories that mean a certain something special to you and you alone, and putting it in a movie-like format - often seemingly "crazy" and odd story line on the surface. If you take the "story" and break it down, you will find that there is meaning and purpose as it relates to your life. If you have never kept a dream journal, I would encourage you to do so. You may find familiar "themes" and patterns to your dreams that actually expose some area of your life for which you have been seeking answers and solutions. The answers to your questions may be coming in the form of a particular type of dream.

I'm so sorry - I sure can empathize with everyone that feels bad all the time. It makes me sad to see how many people live on a day-to-day basis feeling pretty awful. I'm definitely not "young" - I'm 52 and have lived with periods of extreme illness most of my life. In fact yesterday, after my plasma exchange, I came home feeling like I should be 6-ft under instead of above - cried all night from pure physical misery and questioned why in the world God would allow me to live this way. I guess the old saying is true - what doesn't kill you makes you stronger. I wish there were simple answers to how we should cope and respond to chronic illness. For me, I had to hit rock bottom to realize that there are different "seasons" of life - I may be sick as a dog for a period of time but, that doesn't last forever - a new season comes and with it, renewed hope and vitality. Yes, the illness returns and I the cycle starts all over again - but, the new season is coming..... I encourage everyone to hold-on, hang-in, and keep venting to the forum - we all have been through more in a short time than most do in a lifetime - you all have a type of wisdom that only comes from these extreme experiences. I know I learn something from each and every one of you and really appreciate what you bring to the forum. Bless you all - I keep you all in my prayers and thoughts.

My suggestion is to keep open the lines of communication - tell him that you feel like you are losing him - try and elicit an honest two-way discussion about each others feelings and emotions. My experience has been that men want and need a lot of attention. As long as a man feels he has support, security, and lots of attention, he can deal with almost anything. The only way you will find out what he is lacking is to hopefully communicate openly with him. I bet that he has a lot of underlying fears about your illness - especially concerning is that he may lose you as a spouse to this disease. It kind of also sounds like you both are afraid of losing what you have together - I hope that open dialogue is enlightening to you both and will bring you back together on the same path. Chronic illness is difficult for everyone involved - friends, family, and coworkers. I've had to swallow a lot of hurtful things just to maintain relationships - I'm sorry you are having so much difficulty - this forum is a great place to vent and share insights and insecurities.....

The only way I have learned to cope with the fog is simply to "go with the flow" - recognize it for what it is and the limitations it places on me. If I can first identify that it is a "foggy" day, I can then deal with it appropriately. I don't beat myself up over it, I don't place unreasonable expectations on myself, and I can forwarn my coworkers that I may be a little more spacier than usual and require a bit more time to pull together a thought or two. It is still extremely frustrating to know I have deadlines looming and I can't quite grasp the concepts required to meet those deadlines. It does not help, however, to become so distsraught over the brain fog that I can't even perform basic functions. So, I slow down, take a deep breath, and move forward one step at a time - I'm not as swift as I once was but, after 30+ years of dealing with life and death decisions, I am entitled to a little brain fog and a slower pace!

Wow - can't believe I just found this post. I'm sitting here with my ears ringing so loud, I can't hear simple conversation. My mind is drawing a complete blank - I feel half in this world and half out in space somewhere. Attempting to recall certain events from past few days is futile - tried to study my Sunday School lesson with no success - I can't even determine if I am hungry or not - I just don't know what to think! -my mind has gone "kaputz"... this is my "brain fog" - Not too intrusive if it happens here at home but, sure makes my job a lot harder when it hits at work.

As a former ER nurse, I have witnessed many similar episodes in patients who suddenly drop their BP and lose consciousness. As the brain is suddenly starved of blood (oxygen), the body reacts by seizure-like activity - sudden stiffening, tremoring, and even drawing-up arms and arched neck. It does not usually last more than a few moments if it is related to a blood pressure drop. Once the body becomes prone, blood flow is restored to the brain and things get back to normal.