bellgirl

POTLUCK, my regular internist did a acetylcholine receptor antibody test, btw...I was negative. I had lethargy and droopy eye lids, so I asked her to do the test for me, and she did!

I actually asked my ANS doctor about this, and she just said I had Pure Autonomic Failure, but according to what I have read, I tend to think I am Hyper/Low flow POTS, (Hypertension with flushing, and sweating) with some neuropathic thrown in the mix!! I have a neurologist, too. I wished I had obtained more blood work, before getting on all my cardiac meds, so that I could better determine this, but after suffering with symptoms for 13 years, and feeling absolutely awful, I just wanted to feel better. I figure at this point, I will continue to take the meds I'm on, because they make me functional most of the time, and to be honest, I just want the best quality of life I can have. That's my goal. Don't get me wrong, I am very interested in the science, and if I do get progressively worse, I will seek medical attention or search further to feel better. I am curious about NE and dopamine levels at the moment. I still have lots of unanswered questions....

I used to have GERD symptoms really bad when I was on cholesterol medication and was diagnosed with acute gastritis. I also took prilosec for about 6 months, and decided after having the weak muscle side effect from Zocor, I immediately took my self off of it. With my pharmacists help, I weaned myself off of the Prilosec. You can't get off of it quickly, or it will get worse. You need to wean gradually. Depending on how much you were taking, you have wean off like you would a cortisone medication. I still have GI issues, but I try to regulate with my diet; I eat small frequent meals with fruit and vegetables, very little meat, chicken and fish mainly, try to avoid a lot of acidic or spicy foods, and eat yogurt with cultures, too. I will take Maalox on occasion. I also sometimes have spasms in my colon, so I have smooth muscle relaxants for that if they get really bad.

Mostly, my extremities, especially feet and hands, but that could be my age, or just dilation of my blood vessels. More prominent when I'm hot or have had a hot bath or shower.

Vasodilation does help, if you have high blood pressure with POTS, and it increases circulation. I love taking a bath in the winter, but if I stay in too long, I can get lightheaded, or get strange visual auras, and it does increase my heart rate. Like puppylove was saying, it can cause pooling, though, even in the stomach too close to a meal. It is the only thing that will help me get warm, though, because I freeze in the winter. I wear gloves, scarves and boots all the time. In the summer, however, cold showers are great! I'm so yoyo with my temperature. When the tornadoes hit last year, and we had no electricity for 5 days, I didn't mind taking a cold shower; it was invigorating!!

Claire...I believe our blood is thicker due to having only 80-85% less blood than the average person, because of chronic dehydration. This is what my ANS doc told me when I was first diagnosed, anyway! Now I'm wondering if my high cholesterol was caused by my blood being more concentrated...hum Always coming up with new questions. I'm going to my doctors in Birmingham....does anyone have any other questions for the doctors. (Neuro or ANS doctors) I'm always full of them. Love to learn, and want to understand all of this better!!

I was on Losartan/Micardis before my diagnosis of dysautonomia for hypertension. Little to no side effects for me, and to be honest, being so small 105#, and on the highest dose after a major hypertensive episode, even sitting down, (after taking care of my brother-in-law; he had a triple bypass surgery last spring), I was afraid that my B/P would be too low...I thought my doctor would put me on 80 mg. first, but she saw how sick I became, and just told me to watch it...even with 12.5mg hydrochlorothiazide for ankle swelling. It was my first Beta blocker, atenolol, that caused my B/P to plummet 80/40, and HR took a nose dive, 50 standing, even changing the dosing, breaking pills in half, etc. at different times of the day, but now on Bystolic 5mg. at bedtime, I get a little low at night, but my HR is still over 100 sometimes, just standing there, so I needed both. Everyone is different, and I admit, I don't understand it all either, but it is working for me. I do lack energy, but I am still functional; I have to pace myself, too, and listen to my body, so I don't overdue. I go to the gym twice a week, walk my dog short distances everyday, still have days being symptomatic, but I'm so much better!!

I am so hot, I've got to get moving air, preferably the refrigerator...lol, or take some clothes off!! Then I get cold...never a happy medium

I put the age I was when I became symptomatic, not when I was diagnosed. It took 13 years, because I was stubborn and then my husband was out of work and part time, so we didn't have very good insurance, but then I was desperate!!

So sorry, Claire; we all understand...wish you felt better. This warm weather is making it hard for me to breathe, as well...my blood is so thick, sometimes I wonder how I get any to my brain at all...lol. I used to wonder why it was so thick...at least I know the answer to that, and why I have trouble breathing and am exhausted all the time...Loved your video...especially because I am a retired RN. Definitely open your windows!! It is beautiful outside here in Alabama. I wish I was closer to the beach!! Love the sea air...My mom lives in Panama City, but that is 7 hours away!! I'm almost in Tennessee

Glad for you...just saying, I'm on 100mg, started on 40mg; started about 10 years ago, and was on an ACE inhibitor before that for about 2 years, too. I'm tolerating double and a half now after a year of changing my dose, and now I'm on a BB, too, so maybe they would be willing to up your dose, and give it to you twice a day. I would talk with your doctor...but I would also give it time too...it takes a good 4 weeks to really feel the full effect. Be patient

I believe you are right to think that the beta blocker could affect your lab work, because it does affect your kidneys. If you were on the Losartan, too, before your lab work, it would definitely skew the results. I know for sure!! That's why I can't have that done...I've been on Losartan for at least 10 years, and an ACE inhibitor before that...Hope you continue to get some answers. The Losartan works well for me with Bystolic, long acting BB.

Thanks for the response...just thought it was interesting. Don't know whether I would have felt that way, anyway. We never know with this illness, do we?! I also finally have a prescription for the dermatitis I've had on my lips for 2 years, so I received a double portion. Since this was also considered a "Procedure" they filed with my insurance company first, so I didn't have to pay a dime of copay, yet, anyway I thought it was a basal cell carcinoma, and so does the dermatologist. Oh well, no surprise to me, just another hoop to jump through, in my mind. He says that some specialists come from Birmingham to take small pieces of tissue, one layer at a time, and they look at it through the microscope in order to preserve all the good tissue. Also it only requires local anesthesia, Marcaine, next time! This is great, because I am always going to Birmingham to see my doctors, and this time they are coming to me!! I feel special...lol. I always thought my nose was a little too large, anyway!! I'll keep you posted...biopsy will be back in a week.

Just wanted to let you guys know that Lidocaine without epinephrine was alright, but I should have opted for the Marcaine instead, because even though it was only a small injection in my nose, I definitely had some effects from this. I found it interesting, since some of you know, I have increased lacrimation (tearing) for no apparent reason, and that my left eye immediately teared after the injection in the left side of my nose. I prayed before my procedure, I was not anxious, and just asked for NO STIMULANTS. However, after the procedure, I went to prayer group, and about an hour later, I was extremely thirsty, and drank about 24 ounces of fluid at that point. I have been drinking more than usual, because of the warmer weather, as I should. When I got home, I leaned over to pick up something, and I almost passed out. That does NOT usually happen to me. Last night, it happened again, so needless to say, I am staying home today!! It was warmer yesterday, in the 70's, but I was compensating with extra fluids. I was somewhat restless last night and have buzzing in the left side of my head, (not to mention my constant tinnitus) and chest pain today with "normal flushing", haven't felt faint, but I'm also sitting at the computer.

I take a long acting beta blocker at night, and that seems to help with the fatigued feeling during the day, but I also take Losartan for hypertension, so I'm like a leopard without spots (I don't fit the POTS mold, if there is one). Don't use me as your example Issie is right...you need to find out the reason, if you can, or try other medications with your doctor's approval, of course. I had to try out several beta blockers and take different doses at different times of the day. Taking mine at night seems strange, but it helps me sleep, because I have tachycardia while lying down, as well!

We are really the ONLY ones who truly know how we feel. I agree with the moderator, in that you don't have to have tachycardia to feel sick, either. There are so many facets to this illness, and if one is better one day, than something else crops up the next. I would say with medication I am alot more functional. I was getting to the point of severe, because my symptoms were progressing wildly without treatment, (vertigo),to the point where I couldn't do much of anything without being exhausted and I couldn't drive. Now with treatment, I have a moderate form of dysautonomia, that goes from one body system to another, potpourri for lack of a better term. Some days I have chest pain or tachycardia, others GI trouble and nausea, another bladder issues, sometimes dizziness and unbalanced gait (falling), shortness of breath, tremulousness, tinnitus, and other nerve issues, too. Just never know, and I take it as it comes, trying to make the best of life, resting when I can, and praying through it all

A Neurologist with experience with autonomic dysfunction sounds great. This disorder is an Autonomic Nervous System Disorder...so he/she should be helpful, however, I would find another cardiologist, as well, since they would be the ones to order Beta Blockers, unless you have a good internist. Chest pain and sleep issues do go along with this disorder, btw. I can attest to that!! It will make all the difference in your quality of life to get your heart rate regulated, and better sleep !! Praying that you find the right doctors...

Leave it to me to not only have a rare illness, but be unconventional for POTS. I was hypertensive through the roof, but it was really a hills and valley effect; started with very low blood pressure when I was young...my grandfather was 46 when he died of a CVA, dad died at 71 of a stroke, and had a cerebral aneurysm, too, (He lived 12 years after the aneurysm), and I had stroke symptoms in my early 40's. So I am not the norm on this site either. What's normal, anyway?! But I finally have a diagnosis...yah...relief, with some treatment

I'll pray for you and your family....prayer always helps!! Sorry you are hurting physically and emotionally; it is never easy

Unfortunately, I don't have a good autonomic disorders doctor. I have been trying to find one in Washington state. Heard of any good ones? My doctor diagnosed me with POTs but it is obvious he does not know much about it or how to treat it. He also said he would not help me with my sleep. You are fortunate you found a doctor willing to help you with that. Hi Forevertired...I live in Alabama, so I really don't know about doctor's up there, but I would venture to say you might want to find yourself a doctor, who maybe would want to order a sleep study, a good clinic that tests for EEG, your brain, EKG, your heart, O2 concentration, your lungs, EMG, muscle movement, etc. Not all sleep clinics do all these tests You might want to have a separate doctor for this, too! I sleep with a Cpap machine (Continuous Positive Airway Pressure). Unfortunately, there isn't one doctor for all our problems. If you find one who knows about autonomic disorders, they will send you to other doctor's that you need. Have you had a holter monitor, echocardiogram, stress test, EKG or tilt table test? If you ask you doctor, will he set up these tests for you? My internist is good about doing things that I request, but I'm a nurse, too, so I'm sure that has something to do with it! There used to be doctors on this site, too, so you may want to check the state of Washington, too.

You know, Mandy, there are very good doctors at the Autonomic Disorders/Mitral Valve Prolapse Center of Alabama in Birmingham. That is what they specialize in, so I would highly recommend them!! Dr. Phillips is my doctor. I also have a neurologist, Dr. Riser, and Sleep Apnea doctor, Dr. Adams. So I travel to go (my husband drives me), but it is worth it!! You can personal message me, if you like, and I can talk to you more about it

Yes, unfortunately this is normal...you may need something to help you sleep, and decrease your heart rate. Do you have a good autonomic disorders doctor? I have sleep apnea in addition to dysautonomia, and take Klonopin and sometimes ambien, so I can sleep, and I am on a beta blocker, bystolic for my tachycardia. Hope you find what works for you. It's terrible when you can't sleep; believe me, I know

Welcome Mandy...all the symptoms you are experiencing, we have all had at one time or another. Don't let the symptoms alarm you....medications can be a good thing...I was always reluctant to take anything, and I was dying before being diagnosed with horrible dizziness, vertigo and insomnia from tachycardia; Mitral Valve Prolapse, Dysautonomia and Sleep Apnea, is what I was diagnosed with as of August 2011. Clonazepam (Klonopin) helps me sleep, Bystolic, my beta blocker decreases my heart rate, and Losartan keeps my high blood pressure under control. Use what works well for you and talk with your doctors about any side effects. You may need to tweak the doses, or find different medication. It took a while for me to find the right beta blocker...Wish you the best. You have found a wonderful site for support from others. It's helped me immensely to be part of the DINET family

It's kind of interesting to me...right now I'm having trouble sleeping again, and I'm not as dizzy, but shakey, so it depends what day you're asking. It certainly is a potpourri of symptoms...never boring!!

I've been on Losartan for about 10 years now; I'm up to 100mg. even with a diuretic, hydrochlorothiazide 12.5mg. and was just recently put on a beta blocker, Bystolic, and it has works well for me. I was just diagnosed with dysautonomia last year. I think I am low flow, POTS,too; I was hypertensive since my early 40's without this diagnosis, and my father had a medullary sponge kidney, which is hereditary, which I think is what caused his hypertension, as well. He died of a massive stroke almost 13 years ago. I have never had an IVP, and I never had my angiotension level taken before being on meds, but I seem to be able to get enough fluids, but as you know we are all chronically dehydrated, anyway. I was third spacing fluid into my ankles and feet, so the fluid wasn't in the right place to begin with. I think the Losartan just increases the circulation in the kidney, being an angiotension receptor antagonist, so it works more efficiently; because I used to be on it without the diuretic, too, and noticed an increase in urine about an hour after taking it. Welcome POTLUCK...love your name, btw Joy, Kim