yogini

That's awful that your appointment got canceled. Two weeks can certainly feel like an eternity when you are waiting for tests, treatment, etc. I've been there. But I am glad that you are making it to Vandy in January. Hopefully they will have some answers for you! Sorry you are feeling so bad lately. I remember that you have traveled quite a bit, and maybe the that has taken its toll? Sometimes I have a delayed reaction and maybe you will feel better after a little more rest. In terms of school, that is really hard that you might have to take a semester off. I had to take a few months off of work last year. It was a horrible period for me. But the one good thing was that I got some rest and I slowly started walking, doing Yaz exercises, etc. and was able to build up my strength. Back then I was so anxious to get back to work, but looking back now, I wish I had taken more time off, LOL! So if you do wind up taking time off, maybe you can regain some strength and it will turn out to be something positive... Anyway, hang in there---happy new year!

Rossman, Welcome to the forum. There is a form of dysautonomia called NCS (neurocardiogenic syncope), in which I think the heart rate drops. The best way to get tested for this is a tilt table test. There is great information about the various forms of dysautonomia, the test and doctors who might be able to help you on the DINET main page. When I first got diagnosed with POTS, my doctor advised me to have an endocrine work up because some endocrine conditions have an overlap of symptoms with POTS. So your problem may well be endocrine and not dysautonomia. Given your history, it might make sense to pursue both avenues. Keep us posted. -Rita

I think our ears are sensitive to changes in blood pressure. I feel like I have water in my ear or hear crackling noises a lot of times. I feel pressure too. My hearing has been tested and it is normal

You and your family are in my thoughts. -Rita

Below is a paragraph from an article by Dr. Rowe at Johns Hopkins, which typifies my experience. POTS is not caused by deconditioning, but, as Dr. Rowe explains, exercise can help to counteract the symptoms. Like the girl mentioned in the article, there have been at least a couple of long-term POTS patients on this forum who were not otherwise improving, but started to improve after starting an exercise regimen. I have not heard of brain damage in a dysautonomia patient from exercise, but agree that one should proceed slowly and carefully. Whether or not there is a study, the benefits of exercise are widely recognized in the dysautonomia community. It is recommended in articles by all of the leading doctors, as well as on DINET, ndrf, Chris Calder's site, etc. It seems to be mentioned as frequently as salt (on which I don't know if there has been a study either). I guess we will have to agree to disagree on this one... --------------------------------------------------------------------------------------- Exercise is important in regaining the effects that fitness brings in counteracting NMH or POTS. Because exercise can make NMH or POTS symptoms worse in the period before effective treatment has been found, it must be done carefully at first. When you and your doctor feel you are ready, begin a regular regimen of exercise, finding something that does not make you lightheaded and doing it for brief periods at first, increasing gradually. For example, one girl who had been ill for several years began functioning better once two of the NMH medications were working for her. She began exercising on a treadmill, but this made her lightheaded, so she switched to a reclining exercise bike. Although she started with only 2 minutes a day, she increased this in small increments up to 30 minutes 3 times a week after about three months. Walking, water jogging (the water acts as a compressing force to counteract blood pooling in the limbs), stretching, and Tai Chi or yoga may be gentle ways to ease back into exercise. Remember to warm up slowly before, and cool down gradually after exercise. If you plan to exercise outdoors, remember that extreme heat will worsen NMH or POTS. A group of our physical therapist colleagues in Baltimore, led by Rick Violand, PT, have helped us to identify a relatively high frequency of postural asymmetries and areas of adverse mechanical tension in the nervous system as contributors to pain, lightheadedness, and fatigue in many of our patients with orthostatic intolerance. These postural restrictions have helped explain why some patients were finding that exercise led to substantially worse symptoms. Among those who have the worst of these postural restrictions, several weeks of gentle manual physical therapy often prepares them to tolerate the mild aerobic exercise that would have caused a flare-up beforehand. We think careful attention must be paid to postural asymmetries and restrictions in mobility during the physical examination, and the diagnostic expertise of a physical therapist may be essential to identifying problems. Manual techniques that our colleagues employ include gentle neural mobilization (or neural tension work), myofascial release, and cranio-sacral therapy.

I have this symptom and I think mine is similar to what Gena describes. This has happened to me from time to time for years, even though I have only had POTS for about 2 years. It usually happens when I am in a deep sleep. I wake up with a jerking sensation and my heart is beating fast, but it calms down after a while and I go back to sleep. When I first got POTS it wouldn't calm down, but now it's back to what it used to be. I don't think I have sleep apnea.

I don't have CFS or know much about it. But I do know that exercise helps POTS. I think Dr. Low gave me a copy of a study on this when I went to Mayo, so I will have to dig through my files and find it. Exercise helps with heart rhythm and also helps to increase blood volume. I know that my leg muscles have gotten bigger in the last six months since the last time I was measured for compression hose. I also know that I get tachy when I first stand up and recently, the tachy sometimes actually goes DOWN after I start walking. This didn't used to happen before and it must be because my leg muscles are pumping blood back toward my heart. Although I have improved slowly over time, the improvement has been more rapid during times when I exercise regularly, and the improvement has slowed down during the months when I haven't had the chance to exercise. This is just my experience, but I think the exercise has made a big difference for me. Melissa is right. Exercise seems to come up every few days as a topic, and there is some great info if you do a search.

Ernie, I was thinking about this further, and was wondering whether you could lay some ground rules for further tests. For example, maybe you could get them to agree beforehand that they would stop the test if your HR goes above a certain level or your BP drops below a certain level, etc? Not sure it would work, but just a thought... -Rita

Ernie, That is really scary. I mean we have all had our share of clueless doctors, but that really takes the cake! I can see how you might be reluctant to have more tests. Is there any way that you can find out your results from the neurologist before doing any more? I can see how you might want to go forward with the tests, because it does seem like you are close. Let us know when the rest of your tests are and what you decide to do. We're all rooting for you! -Rita

Jenn, I looked into taking Mestinon. I think it increases the BP by squeezing the blood vessels in the upright position. I don't think it increases blood volume. That's why the BP goes back down when you lie down. Dr. Grubb may have been thinking it would help your POTS symptoms, not specific to blood volume. Although I haven't met him, he sounds very approachable. You may want to call his office or shoot him an email with your question/concern. -Rita

When I first got POTS, going to any kind of different setting (restaurants, movies, stores, etc.) would trigger my symptoms. The noises and lights and people make things worse, but even without them I would have symptoms. I think any new scenery can cause overstimulation. But I think by going to these places again and again over time, I actually got a lot more used to it. It is good to have someone with you that is supportive and can help to ease your fears when your symptoms act up. I still have increased symptoms sometimes when I go out, but it is much milder than before. I think it's just like walking or exercising with POTS. When you do it at first it's hard, but if you practice it gets a lot easier, and you can slowly build up your tolerance and overcome your fears...I think it's important to keep trying because doing things that "normal" people do can do a lot to lift your spirits!

Lthomas, I am trying to reduce my salt because my BP has gone up. I didn't realize that birth control could have a diuretic effect. Like Lisa, I have heard and read the opposite - that most people retain water and have increased BP. Lisa, I usually feel bloated around my period and I thought it was the same hormones in the birth control that make me bloated and retain water. I hadn't heard the pregnancy explanation before, but that makes sense too! -Rita

mom4cem, I take atenolol too. My HR numbers are usually about the same as yours. The amount you are taking is actually a pretty low dose, and in my experience taking an extra 12.5mg/day did not slow down my HR all that much. But if your HR is usually in the 70s, it doesn't sound like you need to increase your daily dose. You may want to talk to your doctor about taking an extra 12.5 mg on days when you have a tachy spell. This is what I do, and it helps a ton. When I am having a bad spell, I sometimes use the extra 12.5mg for a few days in a row. My doctor is totally on board with this. By the way, I do agree with Poohbear - these spells and the ups and downs are just a part of POTS. Sometimes they are related to our periods, or over activity, but other times they happen for no reason. I know it doesn't make it any easier when you have them. Feel better soon! -Rita

Lukkycharm42, Well, I talked to my doctor. I have been taking Ortho Tri-Cyclen Lo for nearly 3 weeks. My doctor picked it for me because I wanted the lowest dose of hormone. My BP was balanced before with the salt I was taking. Now the balance has been thrown off a bit due to the birth control. My doc told me that it takes a couple of months to get used to the new med, so I think I need to wait it out. I am not sure I really want to try another kind of birth control, because the hormones would be stronger, which might result in even more water retention and even higher BP. Hopefully my body will adjust and I will figure out the right amount of salt intake over the next few weeks. Radha, In my case the BP increase is due to the birth control I just started taking. But I am pretty sure I have read a few other posts where someone's BP did spike due to low blood volume. Since our autonomic nervous system is off, the body doesn't always regulate BP like a normal person, and sometimes it may overcompensate. -Rita

Ernie, So glad to hear everything went well. Good luck tomorrow and keep us posted. Things sound very promising and I'm really looking forward to hearing the results! -Rita

Feel better soon!

My first signs were dizziness, weight loss and extreme fatigue. My family tells me I looked really skinny and tired over Xmas 2003. I got a virus in Jan 2004, after which I threw up blood (which turned out not to be serious. I remember being very tired after the virus. I went to the gym after work on a Tuesday in mid Feb and started feeling really dizzy and had to stop my workout. Looking back, those were my very first POTS symptoms. The dizziness didn't go away and on Wednesday I went to my doctor he said I was probably dehydrated and that I should drink more fluids. At the time I thought he was blowing me off, but he wasn't so wrong. That Thursday I went to work and started feeling really dizzy on the subway. I made it to my office and then all of a sudden I couldn't stand up. I wound up lying on the floor and having convulsions. That was my first POTS attack. Two years later, I am still petrified of taking the subway!

I don't know a ton about PTSD. Although dysautonomia literally means autonomic dysfunction of any kind, to most of us "dysautonomia" means the conditions listed on the DINET main page: POTS, NCS, Shy Drager, MSA and PAF. There are many other conditions that somehow involve a dysfunction of the autonomic nervous system, but I don't consider them to be in the same family as the above conditions. I can see how PTSD would fall into this category, but I just don't think it's a primary autnomic disorder like POTS, NCS etc. Accidents and trauma cause can POTS, so I could also see how someone with POTS could be misdiagnosed with PTSD due to an overlap in symptoms. There are a lot of conditions that have symptoms similar to POTS (such as Addison's), but are not dysautonomia. So, a large overlap in symptoms doesn't necessarily mean that the conditions are related. So many of us struggle to get diagnosed and for people to believe that we have a real physical illness. I agree with many of the others that it's dangerous to put POTS, NCS, etc. in the same category as something that is primarily a psychological illness.

I have been drinking soup broth to keep up my BP. It is basically like my POTS coffee. I started birth control a couple of weeks ago and this week I started getting really bloated. My BP has also climbed, not to a dangerous level, but it is on the higher side. I am sure these are side effects of the birth control. I had some BP spikes last year and worry that it is going to get even higher, so I tried to cut down on my salt intake. I tried a couple of days without salt, and then I tried lower salt. My BP didn't come down any, but I started to feel exhausted and really dizzy, like the ground is moving up and down. I had some broth and sure enough the symptoms went away. It doesn't really make sense to me that I would feel so bad when two weeks ago my BP was lower and I was my normal POTS self. Does anyone know why this could happen? Maybe a decrease in blood volume? Although I am still retaining water and really bloated, so not sure the blood volume theory works... Is it possible to be "addicted" to the salt even though I don't need so much? I pretty much had the same reaction last year when I tried to go off florinef. My BP was too high and I didn't need the drug anymore, but the withdrawal made my POTS symptoms worse. Florinef is a pretty strong drug though, and salt isn't even a drug... So I have a little dilemma. I feel awful without the salt, but I am sure I don't need as much now that I'm on birth control. On top of everything, I am supposed to fly to my parents' place next week, and I don't want to do anything more to upset my balance for the trip. Of course I could talk to my doctors, but they would probably just tell me to cut down on salt...which is what I want to do, if I just didn't feel so awful! -Rita

Jacquie, I think this is a pretty common symptom for many of us. I know it's scary when you first get POTS and start getting some of these symptoms (and there are a lot of weird ones that noone would believe)! I think it's caused when our brains don't get enough blood, which is the case for a lot of us. If you're ever wondering about a weird symptom, there is a lot of good info if you read back (or search) through the old forum posts and also on the DINET and ndrf websites... -Rita

Hi Ernie, I agree with all of the other responses. I want to thank you for sharing your secret and can't imagine what you must have been going through all this time. I really don't know what to say, other than that you will be in my thoughts and I wish you good luck on your tests. If you feel comfortable with your doctor, maybe it would help to talk through your concerns about taking the tests, and how he might respond if a problem arises. -Rita

I can tolerate a drink or two, but I ususally feel sluggish the next day. I think I get dehydrated, but it also may be that my tolerance is shot. I have decided not to drink for a while, because it's just not worth it. I do feel temporarily better while under the influence, though!

I've had really bad dizziness, headaches, nausea and other POTS symptoms when my HR and BP are totally normal. I got diagnosed with POTS right away, and got put on meds which usually controlled my HR and BP. So my doctors assumed that I was fine and didn't really believe I was still having such bad symptoms. I finally figured out the symptoms were due to POTS after joining the forum and having a million other tests which came back normal. So it's definitely possible that your symptoms are real POTS symptoms, and not just anxiety. It's also very common to feel worse around that time of the month. Rita

It's like a spasm or a twitch, but it's a muscle inside of me that's doing the twitching and it sometimes lasts for a while. I'm hoping it's just an annoying POTS symptom that isn't dangerous...

It's not really a fluttering, it's more like trembling or shaking, but not my whole body, just in a small area around my stomach or chest. It feels kinda the same as when your cell phone vibrates in your pocket, but maybe a little lighter. I have had the fluttering too...