bellgirl

Just for the record, supposedly 30% of those with dysautonomia have sleep apnea...the average size neck for a woman with sleep apnea is 16 inches, and my neck is 11 1/2 inches! I thought that was funny So, is it obstructive or central apnea? Kind of makes you wonder...My oxygen levels were normal. I had so many wires (124), they had an EKG, EEG, leds (about 30 in all) and belts, for limb movements, respirations, O2 concentration...It was very thorough. They even watched me on camera...that was a little creepy...lol

Bananas, I only had 2 REM stages, where the normal is about 5...and I had 91 arousals...79 were respiratory related. I only had 15 apneas in total, but 64 hypopneas, which are inadequate breaths!! Mind you, I was on clonazepam already....I didn't sleep enough the first night, so they had to give me clonazepam and ambien for the second study!! I dreaded the second time around, but I am so glad that I persevered, because my Cpap is my friend

I have sleep apnea and sleep with a Cpap; I also am on clonazepam at night together with Bystolic 5mg. right before bedtime. I also have MVP. I used to wake up with tachycardia and palpitations every night. I existed like this for many years, and was literally dying for lack of sleep!! I chose to take my Beta Blocker at night, so I wouldn't be so lethargic during the day. Bystolic is cardioselective and long acting beta blocker, with 12 hour half life, so I decided it would help me sleep as well. I tried atenolol first, and it didn't last long enough, and caused my HR to plummet, so I had to get off of it. On the third day of withdrawl from atenolol, I had a physiological panic attack, and was immediately given the Bystolic. It took me awhile to get adjusted (was a slug for awhile), but I now sleep through the night, which makes a whole lot of difference in my quality of life!! I do not have EDS...but possibly could have Marfans, which is another connective tissue disorder. The average neck size for sleep apnea for women is 16 inches; my neck is 11 and a half inches, so I find this rather interesting. Just so you know, supposedly 30% of people with Dysautonomia have sleep apnea, so getting tested at a reputable sleep clinic per Dr. order is imperative!!

I also am a rollercoaster B/P gal...I was on Losartan (angiotension antagonist) way before I was diagnosed with Dysautonomia, because of very high blood pressure (my grandfather died of a stroke in his 40's). I started with very low B/P when I was younger. I am now on a beta blocker, too, mainly for my tachycardia, but it does lower B/P, too, so I was very concerned initially, because of already taking a B/P medication...I have to say that it took my body awhile to get used to it; I felt like a slug, most of the time, but once my body got adjusted to it, I very rarely have tachycardia or palpitations any more. I also have Mitral Valve Prolapse, too. It's amazing the difference it has made. I never was able to sleep, and now I do. I also have sleep apnea, and take klonopin at night, too, but I'm much better. Bystolic is a cardioselective (doesn't impair breathing/asthma/sleep apnea) beta blocker that is long acting, so it works well for me!

Thanks Arizona girl for the tips on what you are taking; I also can't tolerate multiple vitamins either...Elena, it is normal for you to have yellow urine, because the B vitamins are water soluble and the excess is excreted in the urine. It is the fat soluble ones vitamins that you have to be careful with like A, K, D and E...there are also some fat soluble supplements, too. When they are fat soluble, you are unable to get rid of them and they build up in your body, so you do need to be careful. I need to get more blood work done on my vitamin D3 level to keep an eye on it, too. I was so low, they started me on 4.000 IU's daily for a month and than decreased my dose to 2,000 IU's for maintenance daily. It's been 5 months, but I have an appointment in a few weeks...always refer to your doctor for advice on these.

It was great...I wrote a comment for you to read on the blog!!

You shouldn't be nervous....that's great I'll take a look!

Thanks Elena, I appreciate you adding sleep apnea. Elena and Arizona girl, I use quite a few supplements to get to the root of the problem. Maybe some wouldn't be so bold, but I'm a nurse and am doing a lot of research, and I hated being a slug, so I took the bull by the horns, so to speak, and started experimenting. I am not recommending that everyone do this, but I started treating the symptoms that I had with supplements; mind you, I'm still on medications, too, but I know they are helping me. You are your best advocate!! My supplements are listed below...my symptoms mimic MS, so I decided I would start taking the supplements recommended for that disease. My energy has increased 10 fold...just saying! Check with your doctor, first

These supplements were recommended for MS patients and all my symptoms mimic MS, too, so I'm still experimenting, and trying to find a balance, but they have made a world of difference in my energy level; I was such a slug with just my medications!! If I get too energetic, I just cut back some. You need to listen to your body....Anything that will help with inflammation in the body and vessels is a good thing for me!! Antioxidants also prevent free radicals and cancer producing agents. Every thing I have read keeps me taking them...I would talk with your doctor, but I'm a real proponent for taking more natural supplements along with medication to make me better. Vitamin D has also improved my energy, when I found I was deficient in that, too!! I have a lot of malabsorption problems, so I have to replace a lot of what our bodies normally have themselves or vitamins found in the foods we eat because of it. Now my teeth are loose, because of malnutrition, and it's not because I am not eating properly, so I had to do something!! I finally had the doctor do my vitamin D level, when doing other blood work!! I'm hoping the vitamin D and magnesium will help with that...nuts are very high in magnesium, too, and I love them, but my teeth hurt when I chew them. I now have to get Invisalign, because of my teeth shifting ; insurance won't pay for that... I'm doing the best that I can! Research on your own. You are your best advocate!! No one is going to take better care of you, than you.

I really know how nausea and vomiting can be; because at one time I was dizzy all the time with bouts of vertigo, so I feel for you; I hope you get some answers. I've lost weight and eating isn't as pleasant as it used to be, so I hear you...I eat mostly because I have to

Supposedly 30% of those with dysautonomia have sleep apnea....just saying

I have sleep apnea and that isn't on the list.

Are you having any other symptoms than nausea? There are medications for that... I wouldn't have a device inserted, unless you were vomiting or having major stomach pain and bloating. If there is some other remedy other than surgery, try that way first. Changing your diet may help, or taking zofran for nausea, as prescribed by your doctor possibly. I live with nausea, too, but that is part of dysautonomia. It used to be really bad before medication, but my appetite has improved lately after adding supplements to my regimen (see below).

Kelly, I like you pray all the time and read scripture; I also decided taking supplements (listed below) has helped me immensely, and being proactive in my own treatment after doing much research. Like when I found out I was deficient in D, after asking for them to draw blood specifically for that.

I know a women who is now pregnant with her third child and she has been taking small doses of beta blockers, but says that she does go into labor early and is put on bedrest, because of her dysautonomia. I'm just seeing the post above. I was on atenolol, and it can cause harm to an unborn fetus. This woman I was talking about has two other children and is on the FB website for Dysautonomia-POTS~Awareness and Support!~ You may want to talk to her about this...I started getting my symptoms for dysautonomia after a virus after having two children when I was 41, but I had a miscarriage of twins, that I believe could have been possibly related to this. I have always had a high heart rate all my life that I can remember started with low blood pressure, and than had high blood pressure when I was about 40. I would definitely talk with your doctor right away.

Brown rice and whole grains are just better for your health, in general. I try to stay away from anything white, because of it turning to sugar. I'm not a nutritionist, but I am a nurse and took a bunch of nutrition classes, and also do research all the time for others and myself, and you guys!! Nurses are jacks/jills of all trades where it comes to taking care of the body, especially when your sick

What you say about the blood pooling for digestion makes sense, and I'm sorry, you are right, we probably all have trouble with this; other than what MomtoGiuliana said, because actually our bodies are designed to eat every two hours. I have to say that the foods you eat, do matter...low sugar or carbs, no caffeine at all, fruits, veggies, fish, chicken, salads, and nuts. I eat more at dinner than any other meal, because of nausea earlier in the day, but you can get vitamins and protein in drinks, as well, and it doesn't take your body as long to process or digest, so instead of skipping a meal, drink Boost, or a protein smoothie. Try not to drink too much before eating, because that will curb your appetite for food. Are you exercising? Because cardiovascular exercise improves blood return to your heart and increases circulation everywhere!! Then you will have more energy to do more. I have added a lot of supplements to my medication regimen that have improved my energy level, after much research. You can see them below. Everyone is different, so you should talk with your doctor, depending what your issues are, but the supplements I have added have improved my quality of life, and I had a lot of deficiencies, as well.

Vagus nerve issues are very common in dysautonomia. I have them as well. Look at some schematics of the Autonomic Nervous System, and you will be amazed at all that is involved. Just all the cranial nerves in general....http://en.wikipedia.org/wiki/Cranial_nerve

I think any extremes in temperature set me off, and barometric pressure, too. I ache more in the winter, and tend to be stiffer, but I can't tolerate the heat in the summer either, because of blood pooling and vasodilation... unless there is a pool or ocean near by I do like to swim...so I guess Fall and Spring are our best seasons, unless you live in California or Florida...lol

I was the most active person alive for many years, even when I was sick, fighting through, until I had dizziness/vertigo that stopped me in my tracks. Nurses don't choose to be sick or lazy...Geez, if I hear this one more time, I'm going to spit further than a Llama!! This is so ridiculous...and I'm one of the skinny ones, too, btw . Thanks for standing up for us Firewatcher!! Thanks Naomi for posting and putting more fire under me for awareness!! This is just plum crazy talk...because I've always been one of the most conditioned people I know, doing every exercise known to man!!

The ketotifen eye drops work well for itchy and red eyes, brand Pataday; but I would think you would need the pill for systemic usage. I take the Pataday drops whenever I have a flare. I'm allergic to 5 grasses, dust mites and rag weed, but received desensitization for 4 years because of bad asthma years ago. Now I only use an inhaler, so it really helped getting the allergy shots back then. I lived in New Orleans at the time, but now live in Huntsville, AL; still get asthma on occasion when I am sick.

It's Ok...we are all a little forgetful, but you realize, that the important things will get done, and the rest doesn't matter...just love those kids, even if you can't always attend their events. They will know you are trying, and hopefully, you will get more energy. The D3 and CoQ10 helped my energy level; it took awhile to get used to the beta blocker. I was very fatigued initially, but it was better about a month in, with the right one! If you are too fatigued with your heart rate or B/P too low, than try another with drs. orders, like I did. Longer acting is better, and cardioselective, if you have breathing issues, too. Bring your own chair, so that you can sit and watch your kids, and drink plenty of fluids!!

Just hang in there; it will take some time; but meds and supplements can really help. Glad you are on D3 and B complex. Listen to your doctor. Sounds like he knows what he is doing The Keppra will calm your nervous system, and stop the tremors and seizures, which is so important! Beta blockers help with tachycardia....you will feel so much better. I'm on Clonazepam for sleep; that is an anti seizure med also; it helps me sleep. Bystolic is my beta blocker; it is long acting and works well for me, but I'm on B/P medication, too, Losartan. Every one is different. It sounds like they are starting with your most important issue first...that's good!!

Are you on medications for tachycardia? It took me about a year with medication and supplements to feel less fatigued, but I still have to pace myself, and need a lot of rest, and still do better, when I sleep 7-8 hours. I also have sleep apnea and Mitral Valve prolapse. I don't think you can have POTS without other issues, because they still really don't know the cause of it to begin with...I was very deficient in vitamin D3 by blood work; taking mega doses per Dr. orders, made a world of difference in my energy levels. Now with the right balance of medication my heart rate and B/P are more normal, too, so all this helps tremendously. Then I did research on supplements, I added one at a time to decide what was good for me. I try to eat right, but for months I was still nauseated, and had malabsorption problems. Once I started on a Beta blocker, and clonazepam, my tachycardia, dizziness/vertigo, tremulousness, vision blurriness, etc. became more manageable. I drink lots of fluids and exercise regularly, but don't over do it, and have found a balance of activity after about a year. You need to find what works for you. The doctors can help you with this, but you know your body better than anyone else. It is trial and error; it takes patience, perseverance, endurance, and grace... Give it some time...there is hope!!

For me, it took about a year to get medications and supplements right, but I was very sick, and became progressively worse without any meds, except B/P medication for about 13 years before diagnosis, so it took awhile. I still have dysautonomia, I'm just a lot more functional and my vital signs, most of the time, are more normal. My signature has all my stats, medications and supplements. I usually do about 5-6 miles on the elliptical a week, and walk my dog every day short distances. I have to pace myself, and when I take long car rides, I still become motion sick, but I am so much better!! I even went para sailing with zofran for nausea!! Gotta keep living as full a life as possible