bellgirl

Everyone is a specialist now a days, so unless they know what they are dealing with, in which with dysautonomia, they don't, they tend to send you to other specialists to rule out other illnesses, Pulmonologists for O2 issues, Cardiologists for tachycardia to determine abnormal function of the heart, ENT's for dizziness/vertigo for possible Menieres, Sleep Specialists to check for Sleep Apnea, Neurologists for seizure disorder or possible Multiple Sclerosis, Rheumatologist for autoimmune diseases, etc. They are just being cautious. You could have O2 issues with Myasthenia Gravis. Maybe after the Pulmonologist, you should get a referral to a Rheumatologist.

Because you had a depressant (alcohol), and typical POTS will cause you to have low blood pressure already, in which you end up with tachycardia to compensate for it, it just adds to the low blood pressure issue, and causes your heart rate to increase all the more, and when the alcohol has worn off, you are even more tachycardic, hence the physiological panic attack. Sounds like you need to be on that beta blocker again to prevent that from happening, and lower your heart rate, or just quit drinking altogether. If I drink at all, it's just a glass of wine. Alcohol also is a diuretic, and will dehydrate you all the more, increasing all your POTS symptoms.

Do you have a Mitral Valve Prolapse? Some with dysautonomia have this because they are hypovolemic (low blood volume), so it makes it harder for your heart to pump the blood to the rest of your body. It's usually normal, but I'd check with your doctor anyway!!

I'm 57, and mine was a gradual onset after a virus. After 10 years my symptoms became progressively worse. After 3 years of dizziness/vertigo and 3 times misjudging curbs and wrecking my car twice, I finally realized it was time to go back to the doctor, so it took 13 years before diagnosis, even after going to a cardiologist, a neurologist and rheumatologist. I find that funny, because these are the kind of doctors I now visit!! Why is it called a doctor visit, anyway?...lol. I sure don't rank it as the same as a visit from a friend or family member, do you?! I actually was diagnosed by an ENT, before any testing, because he had done a thesis on Autonomic Vertigo!! That wasn't just circumstance, that was a God incident for me, because He knew I was desperate!! Thankfully, I didn't have any hearing issues. I live in the moment and some are better than others. I've learned to help others with my nursing knowledge, here, on the internet and on some closed sites on Facebook on the days I'm not doing so well, and then try to do fun things, even if I have to take nausea medications to do it, on the days I'm feeling better. No one knows the number of their days, so I make each day count! I know what my future holds in that I know where I am going when I pass from this life into the next. I'm not worried about it. Yes, I would rather not be sick, but this is my life, and I've accepted it. I'm a lot better with my medications, supplements, diet and exercise. I would like to gain some weight, as I am very thin, but I've been this way my whole life. I have a loving husband, who didn't believe this at first, and that made it very difficult, but now that's better. I have 2 grown sons, one married, so I hope to be a grandmother soon. I'll be a Great Aunt 6 times in September!! I've lived a full life and I'm happy that I can still care for people in a different but caring way. Each of us have separate issues, so we can't really compare ourselves with others, and shouldn't. I'll be happy even if I just live to see my first grand child.

Most helpful: Bystolic (Nebivolol), the only one, 12 hour half life, beta blocker after trying atenolol, which made me into a slug! I can't be off of a beta blocker for more than 2 days or I will have a physiological anxiety attack!! I can't sleep without Klonopin, so that would be my second most helpful medication. For those who are Hyperadenergic, Clonidine is wonderful for adrenal surges in small doses. I take half of .1mg twice a day. I halfed my Losartan to accomodate this for my hypertension. If you are hypotensive, these would not be the drug of choice, just saying. Least able to tolerate: Exercise...it is very helpful from a physiological stand point and I am an advocate of it, but I hate to do it. That's why I answered in that way. It's all in the way you worded it. I haven't found any medication that I've been unable to tolerate, although because I am a retired RN, I believe there are a lot of medications I wouldn't touch with a 10 foot pole, not poll, excuse the pun, because I am too familiar with the side effects. That being said, a lot of my medications that I am on, are because of me being proactive in my care, and doing a lot of research for myself!! I have a wonderful PCP, who allows me to experiment, and my ANS doctor is wonderful, as well, and has suggested many meds that have been used successfully, because of listening to patients symptoms, and the side effects that affect them adversely. Hope this helps you to understand why I answered in the way I did.

Prayers for you on the 10th of June!! I think you are making the right decision. Go Katybug!!

I would think it may have something to do with how our bodies were designed, which is to walk on two legs, bipedal and upright. Like others said, biking makes it harder for the blood to be pumped back to your heart, and that also makes it more difficult to breath when you're bending over and exercising. The ostreotide is a vasoconstrictor, like you mentioned above, which helps with cardiovascular return. I've heard that your calves are considered your second heart, so to speak, because they help to pump blood back to the heart.

It could be your gag reflex. Some of us also have trouble swallowing. It sounds like it could be your vasovagal response to prevent you from choking. They say it's a good idea to raise the head of your bed, or raise your head with pillows to sleep with dysautonomia, but I would be checked for sleep apnea, too, because about a third of us have this, as well. I definitely would check with your doctor.

It actually could be lingering bronchitis. Are you wheezing? That usually indicates asthma. I also have it, but it was so bad in the 80's that I had to be put on desensitization for allergies; now after allergy treatment, I'm a lot better. If I have a bad virus, I will have to use a rescue inhaler, but I used to be on 5 medications for it, so I used to have it really badly. Air hunger or dyspnea is considered part of dysautonomia. There is no wheezing involved in this. It can be very scary, especially at night. I, too, have this problem. It is my worst symptom of POTS right know. I would rather have dizziness/vertigo than this, which is what used to be my major symptom. If you are on a beta blocker, make sure it is cardioselective, if you do have asthma, because it can make your symptoms worse. It sounds like you need a doctor's appointment.

It definitely has a lot to do with malfunctioning baroreceptors in the vessels, and we are all different, some have low blood pressure, some have high blood pressure, some are all over the map, most are tachycardic to compensate to try to get the blood flowing in all the right places, but when it's pooling in one place, it constricting in another, and most of us are hypovolemic and dehydrated to add to the equation, and so you end up with one very disturbed peripheral nervous system, whether it be your sympathetic or parasympathetic system or both!! Our bodies are wonderful at trying to reach a homeostasis too, without causing too much trouble until it's, too late, and if you aren't on medication, it's crazy, and if you are and they are helping somewhat, then it takes even more chaos to set an internal alarm, so to speak. Now they are thinking along the lines that this can be an autoimmune disease, where your own body is attacking itself. Then there are those with connective tissue disorders, other disease entities autoimmune, endocrine, congenital or otherwise, and that makes it even more complicated. It all makes sense to me. I just don't have the solution...sometimes I wish I had become a doctor instead of a nurse, but even the doctors don't have all the answers!!

No, not yet Naomi, but there is always another doctor to go to, and unfortunately, I just postponed one with my Neurologist, due to a bathroom remodel!! I think it's funny we have the same size neck. I have sleep apnea, which is almost unheard of with my size neck...lol. I misquoted, but it is the average size woman's neck size with sleep apnea. Right now I'm having trouble breathing, so I think that is the next thing on my agenda. That's kind of important.

I find all this interesting, especially since I found out about my kyphosis by accident on a chest xray after coughing up frank blood in 2004. I've always had trouble with my neck, it is very long and only 11 and a half inches around, where the average neck size is 16 inches for a woman. I can't sleep on my stomach because of it. Turning my head to the left is harder for me, my neck is always popping, and standing up straight is just not an option. I have more problems with vertigo looking up or looking down, in fact, just yesterday I was getting my sheets out of the dryer looking down, and I fell to the right into the wall, and knocking over my gumball machine! Thank goodness my husband was right there to catch us both! Lol. I'm glad you have a lot of support Katybug, because you will need it!! Don't be superstitious about your appointment date. Keep us updated on how it all goes!! I sure hope it helps your symptoms a bunch; you are young and will heal quickly. That MRI is very telling. I believe it could definitely be a factor with your symptoms. I'm not a radiologist, but being a nurse, and taking care of lots of children after scoliosis surgery, I know a little bit about it. I'm sure you'll do just fine. Through the front of the neck is the best way to go with the cervical spine, and I believe you will make the right decision!

I've heard of this surgery and others who have had it, and wonder whether it is something I should consider, since I have kyphosis, and wonder whether some of my dysautonomia could be improved by this. Wishing you the best in the decision that only you can make, but I would definitely go to another doctor for a second opinion. I'm glad the surgeon you went to has a good reputation. Make sure you have someone that can be with you in the hospital and afterwards, because you will need the help. I hope all goes well. Prayers for the proper decision and for the surgeon to only do what is necessary, and for your healing, if you decide to go through with it!

Check Dysautonomia International. They have a whole write up on it. It's a relatively new site. It gives diagnoses as reasons that patients might have POTS.

Kitt, I take Pataday drops for my eyes when I have trouble with allergies. I used to take Alrex, which also has cortisone in it. I wouldn't want to take any eye drop with a corticosteroid in it for too long either. I use Refresh drops, which are like regular tears, but do use the ointment at night, because otherwise my lids stick to my eye balls literally!! Yes, you read that correctly. I have a Cpap which is blowing air all night, so that doesn't help. I should probably being using Restasis, and the corneal specialist suggested that, but I told her I was already on too many medications. She wanted to keep me as a patient, and since I have to drive 2 hours for 3 other doctors, I told her that I would make an appointment with her if I needed to. As far as the lip biopsy goes, I've heard it is very painful, and I already have enough of that, pain, that is, and there is not a whole lot that can be done for Sjogren's, anyway, other than take care of your teeth and eyes, anyway. I did loose a tooth, btw, when I was very deficient in vitamin D3. If you are concerned with gastrointestinal issues, the next time you have a colonoscopy, they also can check for celiac disease by getting a biopsy then. Do you have GERD, dark stools, IBS, or constipation? If so, you may consider going to a gastroenterologist, anyway. I've never heard of the dark pigmentation meaning GI disease, though, but I'm not a doctor. Actually, to be honest, I think all of us have small fiber neuropathy, eventually, and fibromyalgia, too. Check with your doctor, but from what I have read, Alpha Lipoic Acid can actually help with nerve healing, so I take that regularly. Most Neurologists that treat MS have their patients on it. It also is supposed to help with Parkinson's, as well. I was very tremulous early on, and concerned about this issue, but with all my treatment, not so much anymore. Wish all of you the best.

So excited, especially for the young ones here!! It's already on my Face Book page!!

I never had it done...I get tired of all the doctor's appointments. I feel I should get tested for EDS next time I make an appointment. I'm always trying to find out why?! Yes, I had to go to a corneal specialist, since my eye sight was failing! I thought I had an ocular aneurysm, but the neuro opthamologist couldn't see through my cornea to see my retina for examination, but with my MRI he said he didn't see any aneurysms. My dad had a cerebral one, so that was a relief for me.

Lip biopsy is really the only fairly accurate test for sjogrens, because I tested negative, as well, and I've had major corneal issues (Edema, ulcers, etc) and severe chronic dry eye, and a dry mouth is a constant symptom for me, as well. Biotene is supposed to help your mouth, and I use the Refresh ointment at night, and preservative free eye drops during the day when I remember to do so.

Atenolol made me cry uncontrollably, so I got off of it, and now am on Bystolic, another beta blocker that lasts longer in the system and is time released, and Clonidine and Losartan, for hypertension and tachycardia. I would ask your doctor about the post by Sue. I had a friend with pheochromocytoma, and her symptoms were very similar to ours. A Cat Scan should diagnose that problem.

You could ask your neurologist to schedule you for an EMG, which tests the muscles and nerves, but the test is uncomfortable. My husband had some twitching, which was severe, but his was high potassium; they did an EKG and EMG, and both were negative. It could be his kidneys. He needs to be rechecked. I sometimes get those jolts in my limbs, and electric shock type nerve pains, and I used to be very tremulous. Since I'm on my meds, though, it doesn't happen as often. Today I was singing a very challenging song in choir at church, that left me shaking. That does still happen on occasion. My heart aches today, too! I'm not doing well, because I over did it last week. We are in the middle of a bathroom remodel and buying lots of items. I also have buzzing in my head, which hasn't happened in a while. I just think all of it is Dysautonomia.

I take it every other day, and do feel it burning some after taking it, but I take it in the morning after breakfast, and that makes it better for me, too; other than that, I've had no side effects.

My Cpap is my friend. I've gone for years without sleeping properly and I was literally dying. This is serious, and needs to be taken seriously. Look at my neck. It is 11 and a half inches and the average size neck for sleep apnea is 16 inches for a woman, and of course larger for a man. I've never slept so good. It's amazing the difference it has made. I'm not half as fatigued as I was before. I was hardly unable to do anything, I was so sleep deprived!! I'm a different person entirely. Yes, I'm still sick, but I'm so much better.

I find myself holding my breath without realizing it, until I have to breath or die. So then I concentrate on taking several breath, because I have to breath, but that is a part of what your body is supposed to do automatically without thinking. Our bodies don't do that properly, so that we have to remind ourselves, yes, breath. I also have sleep apnea, and I would suggest everyone get tested, because 30% of us has this. Suddenly waking up in the middle of the night is caused by adrenal surges, which happen a lot of the time because your adrenal glands make your heart speed up to remind your brain to breath. That sounds weird, but with us, that's what has to happen in order for us to breath properly. This is the easiest way to explain it in simple terms. Sometimes we can breath normally, but sometimes we can't.

There was a study done, I think here on Dinet, addressing this issue. They liken to it feeling like COPD. I have had asthma, before, but this is definitely different. I can't explain it. It's the reason I'm getting a stress test on Wednesday. There is a tightness, like I can't completely fill my lungs, and it does happen randomly for no apparent reason. I'll see if I can find the study.

Such a good answer, Raisin. I went to many doctors to no avail, then 13 years later, when I became extremely ill, everything fell into place. The problem was that no one believed me, until my vertigo was so bad, I couldn't even stand up or walk, and was vomiting all over myself. When I started feeling well enough again to research some more, I prayed and asked God to help me find a doctor on the internet. Lo and Behold, I found testimonials about an ENT in Birmingham, whose son took me as his patient, and without me knowing it, he had done a thesis on Autonomic Vertigo!! He sent me to the right doctors. So whatever it takes, God is always faithful; Now I have several doctors that are so special to me, too. Give it time, and never give up!!