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  1. I have some concerns about this topic I would like to respectfully share: I can't find a scientific publication that mentions Protomyxzoa rheumatica, the consensus among most doctors is that Chronic Lyme infection does not persist after antibiotics course, from what I understand CCSVI is an unproven condition that has already led to deaths by surgery, from what I have read. I did find a discussion of this doctor's claims discussed in the blog post "Real Quacks, Imaginary Bugs", see relative-risk blogspot. Here are some risks that concern me: CCSVI surgeries may lead to deaths, stroke and paralysis see FDA warnings in a Reuter's bulletin. Taking antibiotics long term may have cardiac consequences, cause fungal infections, etc.
  2. Well, I do have POTS, but I've come to disbelieve the syndrome as having any significance for me. See my profile for my story. I think my 30 bpm heart rate increase with tilt table was the obvious consequence of having been horizontal too much time over a couple of years since I fell ill. I was in good shape before, but then the energy failed me in the middle of my morning runs, etc.... The thing that bugs me with the POTS "diagnosis" is that my symptoms are fluctuating but never go away. I don't understand why, if POTS as a circulation disorder was the reason for this, I don't feel magnificently better when lying down. But that's not part of the POTS criteria. And if I was breathing too fast, as one doctor suggested, I don't understand why I only breathe to fast when upright or sitting, not when lying down. Anxious orthostatic hyperventilation for fear of sitting? Also, if I stress myself, then my breathing slows down to become normal according to the breath tests. It's all topsy-turvy. I've looked into some of the POTS papers and I'm generally unimpressed with the way patients are selected. Also, I think the controls used are often poorly defined and the distribution of TTT heart rate increase has not even been properly characterized in healthy folks, and various groups of unhealthy people, controlling for age, body stature, measure of fitness, etc. And no one ever came up with the idea of checking whether the postulated hypocapnia measured by breath test and associated with POTS is actually a true physiological CO2 deficiency. So lots of silly basic questions have not been addressed. I understand why some people are really sick from POTS for a variety of rather well-defined physiological causes, but I think the POTS criterion itself is completely arbitrary and way too slack. So, I should probably retire from this forum, I don't think I have any of these underlying conditions and the POTS criterion is quite useless as far as I can see (I'd venture the opinion that most doctors don't recognize it either, so I shouldn't have to as a patient if I don't want to.) I've learned a lot from reading here, though! Nice people, too.
  3. I was given twenty-odd different drugs for brain fog and light headaches by doctors. Many of them made me more sleepy, not less. None of them worked. Then, accidentally I discovered a poor man's stimulant called pseudoephedrine, which is somewhat similar to methylphenidate that E Soskis mentioned. (It's a precursor of amphetamine.) I found pseudoephedrine quite helpful. You can get it OTC in the US but you can go to jail for buying too much of it (it's by law irrelevant what the reason is, mothers have gone to jail for buying it for their kids' colds). So check the rules. I used 12h or 24h formulations. It elevates blood pressure by peripheral vasoconstriction and by elevating heart rate. It may make people jumpy, but that's exactly the kind of effect I was looking for. I believe pseudoephedrine is among the drugs the Johns Hopkins POTS docs have recommended for POTS, but it's probably a good idea to talk to your own doctor first especially if you have anxiety or heart issues.
  4. Angela, just saw this, you wrote that you had eeg showing left front lobe brain waive slowing. Same thing here. In my case, it this was interpreted as being either (1) of no consequence or (2) as indicating a local brain irritation leading to brain dysfunction. I was put on valproic acid. That made me dizzy and it was no help. Don't think I've ever had seizures. I would have liked the eeg to be read by another expert but apparently the reading is time consuming, so I wasn't successful. The indication for this eeg was brainfog, which used to be really bad. I was completely beside myself and had to stop working.
  5. I found this article a very good read, although it's a little dense for a layman. It goes into depth explaining the terms I've seen often here and that I don't understand. Thanks, Issie. And, I was very impressed by the video by Dr. Rowe, the one that Kitt mentioned. It runs for 1 1/2 hours, but he does an admirable job of keying patient stories to quite a lot of statistics that would appear really dry otherwise. Going back to Dr. Benarroch's exposition, it'll be silly it seems to me to ignore that "somatic hypervigiliance" would not be part of us patients who present with POTS. Look at Mrs. Upjohn and her doctor relationship below. Mrs. Upjohn's problem is that her blood pressure is regulated differently on her left and right side. Did such people who complain of autonomic dysfunction die out or what? Realize that the doctors have to deal with actual people like this. So it's just as well the we learn to deal with this fact as patients. I've felt terribly hurt by doctors who stated in very certain terms that my problem was all in my head. That's just part of the battle, most doctors I've spoken to have very much focused on my specific "somatic complaints". That said, I think Dr. Bernarroch is cool and level-headed, he does not IMHO deserve email attacks by insulted patients, he did not say that POTS is psychosomatic. That it can be be part psychosomatic doesn't bother me, because POTS is so broadly and arbitrarly defined, it can be anything almost. Again, there was no mention of the percentage of (deconditioned) people in the population who have 30 bbm heart rate increase on tilt and who don't have symptoms. I bet that's a high number. So I see plenty of reasons to be skeptical of my own POTS diagnosis. Mrs. Upjohn would surely find herself a diagnoses of CFS or POTS or something similar if she had lived today. That's just how it is. For that reason the doctors I'd personally would like to see are the ones in the mindset of Dr. Benarroch. They'd be scornful to the modern crop of Dr. Hackbenbushes. But for the real doctors to be able to help those of us who have mainly somatic causes, we have to understand that the genuine doctors have to separate the Upjohns from the rest of us. That's difficult for the doctors especially if they're attacked by mobs every time the word "somatization" or "hyper-vigilance" are mentioned. I'd suggest that a better counter-attack is to define "psychosomatization", the psychological defense mechanism in doctors that lead to unsubstantiated or generalized claims of somatization in people with unknown diseases. That's how epilepsy, Tourette's, etc were viewed as mental disturbances. Let's not hand the opposition cheap points.
  6. The NET example is interesting, Jangle, but it doesn't buttress your claim that POTS can't stem from the CNS. There might be 1000 other such factors that produce POTS in experiments, but none of which cause POTS clinically. And there be one that does cause POTS in the clinic and is part of the CNS. I would think that's really hard to know. Autoantibodies and NET transcription aren't regulated by CNS activity you say. Look, there could be tens of thousands of unknown pathways in play. Low hanging fruit examples: the CNS helps control temperature, a determinant of the speed of chemical processes and there are glands whose activity is influenced by the CNS and that have immunological effects. Sam_ci's doctor's hypothesis is probably not a priori a bad one, it's just there seems to be no evidence it actually explains POTS. What the POTS researchers suggest is more probable as you say. I don't have any opinion about the data of the particular studies you mention, but generally there are many ways that well-intentioned and honest researchers may end up publishing wrong or skewed data. I think most of us patients don't grasp how uncertain medical science is. Well, I should speak for myself perhaps only I was very naive the first couple of years I was ill when I thought there was a lot of substance to CFS and POTS research. Now, I don't think there is, but it's generally not the fault of the researchers, they're working in an extremely difficult area. [Actually, come to think of it, some of the CFS research has been rather scandal plagued...] I hope very much that what's under the umbrella of POTS will be pieced out in better defined parts so that POTS avoids becoming the new CFS. Having more specific subsets would also prevent half-baked explanations to present themselves as the solution to much suffering.
  7. hi Jangle, if you meant to imply with your quotes that a CNS origin is unlikely of whatever Sam_ci (or the rest of us) suffer from you're making mistakes in your reasoning, I'd most respectfully dare to venture: 1) CFS/POTS/neurasthenia -- whatever dubious rubber definition we apply to ourselves --- are not one disorder. A large minority of us may be suffering from CNS dysfunction or primary mental dysfunction or psychological dysfunction or whatever and the associations you report would still hold true on the average even if that dysfunction does not relate to the variables you quote. 2) The associations you refer to may easily be plain wrong (that happens to a large, very large, proportion of medical research). 3) And, this is or should be drilled into your head as you learn statistics: correlation is not causation, correlation is not causation, correlation is not causation. So even if POTS or CFS had exactly one pathophysiological explanation, there's nothing in the observations you quote, even if true, that per se precludes a CNS origin and cause. So I'll vote for giving a CNS a chance. That being said, I'm by reflex running for the door when I see a phrase like here's my "video explaining the causes of ME, CSF & Fibromyalgia". It's the little word "the" that does it for me. More telling in my opinion is that this doctor's claim to fame is in the journal "Medical Hypothesis", which is not exactly the New England Journal of Medicine. In ten years, this non-seminal work has been cited 20 times, some of them in really dubious publications or in self-references. But I agree with you, Jangle, that each of us ought to follow what works for us -- yeah, I've been through a few of these alternative programs myself (with no success in my case, even if doctors or Ph.D.s are behind).
  8. Me too, I've at times felt that I had a "flow problem". That's because when I lean over the pressure in my head becomes quite painful. Not right away, but within like a 1/2 minute or so. I always thought it was blood flow that did it, but I'm much less sure now. Still, I think that the key things to take away from this article are: “The scientific value of this paper is zero” "many ... regard the theory as bunk" Chiari malformation is a scary example along the same lines: it's a real disorder, but it's also a fake disorder promoted on internet forums by unscrupulous people, some of them patients unfortunately.
  9. busybee: during periods when I'm less affected, my headache goes away at night, and then it begins all over within a couple of minutes after I get out of bed, then it varies all day. The pain is mild, like a squeeze, in my forehead. The brain fog is always part of the headache. When symptoms are worse, the pain is there all the time. It doesn't feel like any ordinary headache. diamondcut: yes, I've had nerve blocks in the trigeminal nerve and they tend to give relief for less than an hour, but I haven't had any nerve procedures done. Drinking lots of liquids help, but not for long.
  10. Jangle, if by salt water you mean isotonic NaCl solution, then I'm with sue1234: go easy and drink it little at time, over a couple of hours, just as how an IV drip would work. You'll get a very unpleasant rise in blood pressure if you swallow this stuff too fast. I'm using the following recipe: at the warehouse, I get a 3/4 gallon orange juice container, non-refrigerated. That's almost 3 liters. I spike it with close to 15ml (3 teaspoons) sodium chloride and shake it. That gives me a solution that's roughly isotonic as far as salt goes. And moreover, the orange juice already contains potassium and lots of sugars, bumping up the molarity and that will help the concoction stay in the blood longer. Even better still, these ingredients also make the potion somewhat palatable. I don't bother putting it in the fridge, it'll stay fresh for a couple of days. I'm NOT recommending drinking this much over one day, it's meant for several days of use. Be careful, the sugars may overpower the salt and make you drink this stuff too fast. With all these salt experiments, you will be getting WAY, WAY over the recommend sodium intake and you can see that this is risky: http://www.cdc.gov/features/dssodium/. In fact, the 15ml salt I'm using is about 30 grams or some twenty times the recommended daily max sodium intake for many kinds of folks. Check with your doctor. The way, I go about it is to gulp down own cup and sip over a couple of hours for a total of may three to five cups. That's all I do in day, a liter max. Also, I've had IV saline several times. Same good stuff -- it works every time, within 20 min to 60 min depending on fast I'm started, For me, the downside of this therapy is that the benefits are short lived. What happens is that once the peeing starts it seems difficult to keep the added blood volume at the maximum, it'll drop somewhat perhaps to a level not too different from baseline. Also, blood pressure goes up and that's just not desirable even if it is low normal to start with. So for me, this hydration therapy is no miracle, but still helpful.
  11. "I also get the strong desire to clench my teeth and often have the tongue reflex up to the roof of my mouth. This just happens automatically." (Jangle) Same here -- for relief in my case, and the more the better.
  12. Dr. Levine wrote a mostly gracious response to Dr. Fogoros's ill-considered piece -- but Dr. Levine continues to belittle patients with his belief in the curative power of humor, especially his humor, tailored as it is to gain press attention. That aside, were these two learned people more inquisitive, they'd help us understand better there may be more than "sentinel events" to the desire to lie down. Something has gone wrong, what on-going processes could that be? Isn't it a fascinating medical question that people declare them sick with brain fog or extreme tiredness, but essentially don't seem depressed? That's a difficult enough situation to explain to a doctor. Neither of these guys really help us with that. Many of us are just as haunted after we've reconditioned, so the heart deconditioning is perhaps not even interesting, just something that's very hard to avoid for us who struggle with that other on-going "event" that wants to make us rest. That is an event that I'd like to assure Dr. Levine about is much more than "initiating" for some of us. Still, thanks for reminding us to exercise.
  13. The real problem may be this: "None of these patients had measurable abnormalities in their autonomic nervous system." If this finding can be reproduced by others in so far as heart rate & blood volume go, then indeed it's many of us patients who are the losers if we've been led down the wrong path by an inordinate focus on something that just isn't essential to what makes us sick. And what makes us sick? Who knows how many causes there are? Dr. Levine may be right about it being deconditioning that's causing the heart rate increases. I like many others was in excellent shape when the brain fog and fatigue started hitting me. Much much later I found out that a whole day of intensive exercise would much reduce my symptoms -- for a few hours, but that does not go very far in explaining anything or really help me in anyway or get me off disability. Dr. Fogoros may be mistaken about "the correct diagnosis is made" for those of us who don't have any measurable abnormalities -- if there are no cardiac abnormalities for many of us then that's damning to the notion of POTS as something pretty common. (And that's not fair to those who are really struggling with racing hearts and dizziness.) If POTS is made too inclusive then it's not going to be taken seriously. In my case my tilt table test heart beat increase was 30, yeah my heart is racing but so what, is that just a symptom of being skinny or out-of-shape or what? So, I was happy to hear that such increase is normal (not from POTS doctor, though). I'm still really confused about POTS symptoms because I do see in this forum that there're other folks with problems very much like mine. I think Dr. Fogoros committed a grave error by not acknowledging that Levine's conclusion may be essentially true, possibly many POTS patients don't suffer from cardiac dysfunction of any sort, and that make's it almost impossible for us to get taken seriously as a tremendously important medical problem. Dr. Fogoros certainly does not know at all what's wrong with POTS patients or even if POTS is at the heart -- so to speak -- of their medical problems. Poor judgement in my opinion. It is worth thinking about what happened for Chronic Fatigue Syndrome, the murine virus just ended up hurting the cause of people who suffer from unexplained fatigue. In any case none of what I've seen, call it what you want, has helped me overcome the brain fog that's really my main symptom. But I continue to follow POTS and CFS and other things because you never know.... Some it is so eerily familiar, just can't find the answers.
  14. TXPOTS and Ramakentesh: Thanks to both of you for uplifting stories of recovery. I have my own recovery story to tell: a long time ago I was hit with brain fog and need to lie down and pressure in head. This was many months after wisdom tooth removal. But the problem disappeared by itself after a couple of years. This time around the very same problem has lasted four years. It rolled in slowly about a year after I had deviated septum surgery with bone cut out from inside my nose. I do try to exercise often now, but first I load up on fruit smoothies or V8 or such, at least 20 ounces. I found flourinef to not do much, but the juice loading always works for an hour or so. TXPOTS and Ramakentesh: good luck, hope you wont find reason to write here again.
  15. Thanks for following up, guys. Sue1234: you ask whether something less drastic than seeking the depths of the pool would show something? Speaking for myself, just leaning the neck back helps me, especially if I at the same time tighten my back muscles. Here's more detail. My combined "normalcy maneuver" could be something like: (1) slouch in chair, sliding behind forward (2) make spine concave by pushing belly up, (3) look at ceiling behind me and by tilting neck all the way back (4) relax other muscles and keep breathing and hold this position for say a minute. When I do this, the sick feeling in my head largely disappears (perhaps totally if symptoms were light to start with). I experience normalcy, kind of, for a minute! But the sick-in-head feeling returns quickly after I stop as if something is slowly tightening somewhere in my forehead. Same thing happens when I do the compression of mid-face trick I mentioned in previous post. Actually, what's going on for the leaning-head-back or leaning-head-forward situations, in terms of spinal sac volume changes, is shown very neatly around 30 min into . That is of course the very video you found for us in thread on cervical stenosis! When you lean your head backwards the spinal sac is squeezed. Tightening the back muscles squeezes it even further. As a result the pressure in the brain increases because the fluid in the brain and surrounding the spinal are part of the same system. As the video also shows nicely I think is that the volume of the spinal chord is increased when leaning forward. That would decrease the pressure surrounding the brain. And so although I used to believe that my pain gets worse in that situation because the brain moves forward and stretches something, I don't think that has anything to do with it. Rather I now believe that the lesser pressure affects the ethmoid sinus area in a bad way. But I'm again speaking about my own strange experience only, where the cervical stenosis is good, not bad. You also ask about phantom smells. Perhaps you know this already, it's actually a legitimate symptom, at least it has a Greek sounding name: dysosmia. To pat57: Yes indeed, it could be something that points to epilepsy. So I was tested for that while being hospitalized. But that was negative although my EEG did come out abnormal. As for migraines, I don't believe I've ever had one! This feeling of sudden well-being is not a prodrome in any case, just a mysterious short remission, as it were. For those wondering: this speculation would be POTS related if some cases of POTS are caused by autonomic dysfunction thanks to cranial nerve compression or other cranial nerve issues. If anybody has any references to such connections, I'd love to see them. FB
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