MomtoGiuliana

Happy and healthier New Year to you all. Katherine

Mono is VERY common so it will be difficult to draw any conclusions from this.

Jessica I love your Gandhi quote selection, btw. I so know what you mean about spending your hard-earned money. Alternative medicine can be no less expensive than the non-alternatives. It may be helpful, but maybe not. Unfortunately with illnessses like ours there are "alternative" practitioners out there who take advantage of the fact that there is so little understood about these problems to make claims or promises for which there is limited or no evidence to support their efficacy. BUT, there are also practitioners who might be helpful. So, good luck. In the meantime, you might also want to consider finding a mainstream electrophysiologist with POTS knowledge as well. Katherine

Julia sorry that you have been through so much. A lot of it sounds like 'normal' POTS stuff to me--the weakness, wobby feeling and the tremors. I get many of these symptoms you describe too when I go through a bad spell. Like me, it sounds like you need to work on pacing yourself and allowing yourself to have bad episodes and listen to your body, and letting some things go. Hard I know. I hope you start to mend soon. Katherine

I agree with all the above posts regarding being careful--as or more so than you would be with traditional modern physicians. That said, naturopathy in particular is generally benign, gentle and non-invasive and may be helpful. I saw a naturopath who was understanding and compassionate--more so than any doctor until I found my current specialist and got a proper diagnosis. She did a few interesting tests and gave me some treatments that didn't do anything for me. She was also unable to diagnose my problem, yet had some general ideas, some of which were correct. The thing that irritated me was when I was finally diagnosed and I gave her the diagnosis, she was kind of funny about it and insisted she had already diagnosed me and knew exactly what was wrong--yet, she never suggested any of the simple things like extra fluid or salt intake, that would definitely have helped. I wanted her to know about my physician so that if she ever saw other POTS patients she could refer them to my specialist--but she insisted that she is as much a specialist in the disorder as he is. I found this a bit disconcerting. Anyway, like others have said--there are a variety of physicians of all kinds out there, so careful screeing and some skepticism is always prudent. Also, Jessica, don't assume that herbal remedies are always safer and gentler with fewer side effects. This may not be the case. And also, there is much less scientific scrutiny of these remedies. Regardless, there is a place for this alternative medical wisdom, I believe. Even traditional doctors are beginning to acknowledge that--it does require more active involvement on the part of the patient though--as far as researching the credentials of the alternative physician, getting 2nd opinions, etc. I agree it is worth a shot. Katherine

Jessica I'm in the midst of something--don't know really what to expect or what to make of it, but hoping for the best! I did restart both the SSRI and the beta blocker and I know from before that there is a period of adjustment. I keep having episodes of the old symptoms--bad tachycardia, dizziness, lightneadedness, feeling cold and hot, weird weak feelings in my arms and legs, bad palpitations--it will last for hours and then I feel better again. Especially if I drink plently of fluids and consume some salt. So far, I am able to function reasonably well--but there have been some times I have had to sit down. I think I tried to go off the meds too soon? I don't know. My doctor did warn me that this could happen, and I took the chance anyway. I'm glad you made it through your 2nd hurricane ok. Wow, you have been through so much since you've moved down there. That certainly must be challenging you physically and mentally! Take care and hugs for Ethan. Katherine

Sue, I know about some of the problems you are facing based on your recent posts. I am really sorry you are going through all of this. Is your dysfunction primarily related to unpredictable fainting episodes at this point, or are there other symptoms that are making you non-functional right now? I am going through a minor relapse right now. I don't really know why except that I did decide to discontinue all my medications back in June. All was good until last week. I have restarted the meds, but not feeling as good as I was for most of the summer. I do realize that relapses are common for most people with this. I guess I am just kind of scared that I could get *really* sick again, and I am curious whether that has happened to anyone. I do also understand the value of positive thought, so am working hard on that front too. Without this forum, truly, it would be so easy for me to get discouraged. I am so glad that if we are all in this--we are at least in it together.

JLB--I don't know where to refer you to further reading--sorry! Someone else may. I just know that there is a dirurnal cycle associated with production of cortisol, for example. I am sure other hormones too. Supposedly, cortisol production can be disrupted a bit for POTS patients. I think this is really just a theory without much research to truly support it, unfortunately. But, clearly many of us notice worse symptoms at particular times of day, so that suggests that there is something going on on a daily cycle for many of us. Katherine PS are you feeling any better than you were a few days ago?

I am curious, has anyone on this forum who became housebound/bedridden with POTS recovered to a functional level and then gone back to being housebound/disabled--or swing back and forth at this extreme level, once on medication? The other question on this--has anyone noticed over a period of years, increasingly forceful palpitations/PVCs, even with no other symptoms, or no other noticably progressive symptoms? Thanks, Katherine

ramakentesh--my experience exactly! Katherine

I know what you mean when you say you are hesitant to check with your doctor. There are so many symptoms associated with this condition. The chest heaviness, short-of-breath, lightheadedness, nausea, heart beating very hard, are all POTS symptoms. It may be that these symptoms are part of your condition, but if you have any concerns about a new symptom--particularly one that seems to affect your function, it is a very good idea to talk to your doctor as soon as you can. Is Nadolol a beta blocker? That would reduce yor heart rate and your blood pressure. Take care and let us know how you are doing. Katherine

Yes, the diurnal cycle you describe is typical for me too. I would say, generally, I feel better as the day goes on. By the time it's time to go to bed, I feel my best, often. For some reason this is typical of this condition. May have to do with fluid levels and also diurnal hormonal changes.

I also learned a bit of biofeedback last year when I was disabled by POTS. My GP was convinced I was mentally ill and so I agreed to see a psychiatrist. The psychiastrist determined that I was not mentally ill, and she thought that I might find some relief from seeing a psychologist with training in biofeedback (and hypnotism--tho he didn't recommend that in my case for whatever reason). I did find biofeedback helpful. He used a computerized system that I was connected to electrodes connected to me to teach me deep relaxation through breathing. I know it sounds simple--but as we all know too well, it is very hard for us POTS patients to relax--even when we get to a point of non-function. He is a strong believer in the mind/body connection and the value of deep relaxation as a tool for healing--and I am too b/c I think it was an important aspect of my healing process. Anyway, as you breathe, the computer screen shows muscle activity, and I would try to keep that below a certain level by employing the breathing techniques. Once you learn how to do it using the machine, you can replicate it at home (which is important--you use the machine to learn technique which you then continue to practice on your own.) Biofeedback is used for other things too, but this is the only way he used it with me. It is non-invasive and worth exploring.

lilbanana Sorry you are feeling depressed. It's good that you recognize it. I don't believe that depression per se is a POTS symptom, HOWEVER, I think it is very usual to experience depression with a chronic illness, especially if it is interfering greatly with your ability to live your life as you have in the past. Also, medications can cause depression--such as beta blockers. I don't know about florinef since I've never used it. I would suggest that you talk to your doctor about your depression. BTW, SSRIs that treat depression, also help relieve POTS symptoms in some people. Perhaps this is something to talk to your specialist about. Hope you are feeling better soon. Katherine PS I noticed that you were diagnosed about the same time I was. I was diagnosed 2/03.

Keep asking all the questions you want! Believe me, the discussions don't just help you--but many others too. Yes, I have had bad nighttime spells like you describe. Overall, not as bad as 18-24 months ago when my POTS was its worst. I didn't find the TTT to aggravate my symptoms, but I was quite sick when I finally had it done. On your airplane trip make sure you keep fluids and electrolytes up as air travel is very drying and the air is also somewhat oxygen-depleted. You may find that to be more challenging than the TTT? I think the sensations when you move your head back and forth are a common POTS symptom. I used to get that too. Sometimes I still do and just have to move my head slowly to avoid getting that! Recovery varies tremendously as does the definition of it. I would say I am recovered, but I still have difficult spells and I am still on medications. I was diagnosed about 18 months ago. I now work part-time and care for my 22 month old. Basically, my life is "normal"--but I do have to be careful with diet, getting adequate rest, enough fluids. I can't exercise like I used to, but I try to get some aerobic exercise every day--even if it is just climbing up and down the 3 flights of stairs at work. Climbing those stairs was first impossible, then very tough, and now manageable, most days. Cold feeling--yes I used to get that--it seemed like my body couldn't control temp very well. I'd have hot followed by cold follwed by hot spells. Take care. Hope you see some improvement soon.

Gena--I am so with you--and everyone-- regarding such episodes. They are awful. I get them at night especially too. I also get it after eating--for some reason, adrenalin kicks in overtime for me after I eat (anything)--at times. I have not been able to find anything to slow my hr once it kicks into this pattern, except a very low dose beta blocker. I stopped using it for two months, but have started again after the most difficult past couple of days I have had for awhile. I take 5 mg of pindolol in the AM and 2.5 mg at night before bed. I do my best to avoid using medications, but the beta blocker helps so much that I think I will be relying on it in the years to come. I am also curious about the comments made in response about occasional use of the beta blocker on an as-needed basis. When I stopped using it two months ago, I had to "wean" off it slowly (as my doctor directed me to do). I didn't realize it could be used as needed--but maybe some can be used that way? Or maybe my doctor was just being extra cautious? He told me I could go ahead and restart it, if I found I needed to. Katherine

JLB--I am sorry you are feeling poorly again. I hope it passes quickly. I have recoverd quite well, BUT, I still have had some pretty difficult days. One episode occured following a thyroid biopsy and lasted for nearly a week. I missed a day of work and was so so scared that I was going downhill again--and yet, after nearly a week I was back on the path of recovery. Just yesterday, something happened to trigger a bunch of bad symptoms. I can't figure out what it could have been. I have been off my meds for 2 months and was pretty happy that things were going fairly well. My only symptoms had been moderate tachcardia and some palpitations. Well, two nights ago I had a pounding hr all night long, tons of scary palpitations, odd feelings in my arms and legs and head. I started back on my medications yesterday AM. I am just too afraid of becoming disabled again. So, yes, I guess this is how it can go for some or many of us. Hope you are feeling better today. Katherine

futurehope--thanks for your point. Doctors have told me that too--that POTS is a symptom not an illness, and this is confusing--because for the vast majority of us we nor our doctors have any idea what could be the cause. That said, I do wonder if for many of us there is an autoimmune problem going on. Autoimmune patients tend to have more that one autoimmune condition. I have also read that lupus patients often have POTS. Anyway, that's why I was curious about how many of us have already been diagnosed with one autoimmune condition or more. I think you are absolutely right--considering how much variation there is in response to treatment and recovery and POTS symptoms, there must be multiple causes. Katherine

I went through a period with very horrible headaches that responded to no pain medication for about a year--this was about six years ago. Eventually it abated. There was never any explanation for them. I even had a CAT scan and MRI done at one point. I know there are folks on this forum who have migraines and also that headaches are a POTS symptom. Hopefully yours will get better with time too. Katherine

Refined sugars are still out for me. I "cheat" and regret it, as it exaccerbates tachycardia and other symptoms. However, fruit is fine for me. In fact, I find I feel best on days that I load up on fresh fruits and veggies--maybe it's the extra fluid and potassium. I agree with Gena that it is a good idea to do some testing for food allergies or autoimmune response, particularly if you suspect you may have some kind of intolerance! I also find that eating smaller more frequent meals helps me reduce my symptoms, particularly in the early part of the day.

Thanks everyone for your respones so far! calypso--yes, hearing that from Dr. Weil IS reassuring. Danelle--thanks for sharing your experience with long-term use. Gena--did these people with cardiac output reductions recover do you know? Also were they on low doses? Thanks, Katherine

This topic may also have come up before. This question has come to my mind both in response to the discussions yesterday with calypso and also my current situation. I was on a low dose beta blocker for about one year. I am now off it, by my choice in consultation with my specialist. Tachycardia and lots of palps are my biggest symptoms, these days. I also have slightly elevated blood pressure on standing. My questions are: Is there anyone on this forum who has taken a beta blocker for 5 years or more? Does anyone know of any studies/ medical knowledge indicating any health risks associated with long-term (however defined) use of low dose beta blockers? (not related to pregnancy or lactation, btw, just effects on the person taking the drug.) I will see my doc again in December and will also talk to him about this stuff then. Thanks everyone, Katherine

Others should chime in too on this. I THINK an echo is sufficient. That would identify valve problems, and size or shape problems. I've had several of them over the years and everything has always be 100% normal. I've never had a stress test--but I don't think that would id structural problems? Keep in mind that invasive tests may have unnecessary risks associated with them and may not be recommended for that reason. I agree with Merrill--start a new thread on this!

Good point Gena! Also, many people don't realize they have this condition b/c the symptoms can be mild and/or can mimic other problems. Also, just another point on this--my endo told me that most people with autoimmune celiac also have Hashimoto's--they are just beginning to realize this. The reverse is apparently not true. He tested me for celiac just in case, but I tested negative.

Agree completely with ethansmom. The condition manifests itself at many different intensities--even within one person over time. My POTS specialist believes it is a more common condition than currently accepted, just that in many people it is at a mild enough level that they are not generally affected and certainly not disabled by it. He often presents information on POTS to doctors within the region. He told me that every time he gives a talk, at least 2 doctors approach him afterwards and tell me that they think THEY have it! How crazy is that?! Katherine