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Everything posted by Katybug

  1. Yes, I have been treated extensively for tick borne illness but that seems to be behind me (if it ever really can be behind you) but I do believe it's what set everything else off. Per TCP'S note, some antibiotics have an anti inflammatory effect, i.e. Flagyl. As mast cells are part of the inflammatory process, that's probably what's happening there. But, we can all have varying reactions to things, especially when we have mast cell issues. I'm extremely allergic to some antibiotics. Others are not a problem.
  2. Hi DG! So, first, I agree with yogini that I wouldn't dismiss the spinal fluid compressing the spinal nerves and brain as only causing the symptoms you listed. I would think that could be a much more complex issue that may have been damaging a variety of neural tissue that will take some time to heal. Just like other soft tissue, nerves take time to heal so I will keep my fingers crossed that some of your daughter's other symptoms will gradually improve after the Diamox has worked it's magic. POTS is a rise a HR. But, you can have more than one type of autonomic dysfunction co-morbidly. Orthostatic hypotension or Neurocardiogenic Syncope (NCS) are types of autonomic dysfunction that refers to low bp. I will also note that there seems to be a bit of a "spectrum" for lack of a better way to put it. I'm diagnosed with POTS. But, I also started out this rodeo with consistently low bp (not just standing). Over time the weirdness with my bp has changed several times but never long enough to dx an additional form of dysautonomia. For example, once we got my bp up generally, then for a time I did have some orthostatic hypotension but the episodes were hard to catch on a monitor and they were fast....an extreme dip for only 3-5 seconds then it would recover. But, of course, a 40 pt drop even if it recovers in seconds is enough to make you feel awful. This lasted for only a few months, then seemed to taper off. I also had a period of very narrow pulse pressures. Again this tapered off after a few months. I currently am having some wild swings from 20 pts too high to 10-15 pts too low but the swing itself makes me feel awful. We (my POTS neuro and I along with help from my cardiologist ) treat these issues as they come based on signs and symptoms and don't worry so much about labeling it since this is a feature that remains inconsistent for me. As you describe the tremoring/flushing episodes in their entirety, it very much reminded me of reading about a significant mast cell reaction. Mast cell reactions can range from simple rashes to full blown anaphylaxis with quite a range in between. That might be something to think about. Finally, an ENT that I went to early on in my illness gave me some sage advice. He said he could recognize from looking at me that I wasn't well and explained what was happening in my ear (a middle ear muscle spasm). He also said that while he didn't have the "light bulb" moment that said "this is what she has", that I was doing the right thing. In fact, that I was doing what doctors do to narrow down a diagnosis.....look at all the symptoms, ask what could it be, test for the things that come to mind in order to rule things out and narrow the field. He said that in my case, because of the complexity and wide range of symptoms, going to each of the specialties was unfortunately part of this process but that I should keep going...keep asking...keep trying...and treat symptoms in the meantime. I can't say it any better than he did. I'm keeping your family in my good thoughts. I know it's hard. Katie
  3. I know there was another member that said their dysautonomia was the result of a reaction to a statin drug.
  4. I think it's hard to say if this is from the med or not because we all experience medications and their side effects so differently. Florinef is used to build blood volume and therefore increase blood pressure by retaining salt and therefore fluid. This increase in BP is then, in theory, supposed to help slow the heart rate. I'm a bit unclear from your post as to what the final diagnosis was that led to a florinef prescription. Was his BP low or low enough to suspect that this was contributing to his original symptoms? I started out with low BP but have been able to stabilize my BP for the most part. However, I do occasionally have low BP for a couple days but I also now occasionally have a higher BP (133/86) like I am having today. Interestingly, I become symptomatic with the same symptoms when either of these things happen. I apparently have a sweet spot for my BP and when I go too high or low, it makes me ill.
  5. I'm no expert on this, but I think the answer to your question would depend on the type of arrhythmia.
  6. Interesting. My nighttime sleep study showed episodes of tachycardia during my sleep but luckily they didn't wake me.
  7. I don't know your docs so it's hard to say. I went to the endo as a follow up assuming that's all we were doing and walked out with a plan to make me feel better. Because I don't think POTS when I think endo, I hadn't really expected that. But, he is the most "let's try it, what have we got to lose, must get you a better quality of life" on my team (actually they all are but he's maybe most aggressive about that.) So, my lesson was....tell them all and maybe one of them will have the light bulb moment and prescribe the thing that works.
  8. There is a subtype of POTS called hyperandrenergic POTS which is known for patients having high BP and high HR upon standing. I know we have other members that have this particular pattern. Also, I used to have the pattern you describe where I could have a few days symptom free and then, for no reason at all, wake up completely symptomatic one day. I don't think this is that unusual either. My symptoms are more consistent now but I happen to have other health issues that are contributing to my POTS problems. Welcome to our community, btw.☺
  9. Her BP is so low that her body might be raising her HR even more trying to compensate for the low BP. If it was me, I would talk to the doc about stabilizing my BP to see how that affects the HR and the symptoms. In fact, I did just have this conversation with the endocrinologist. During my follow up we were discussing the fact that I've been struggling through this summer with even basic tasks. My BP which has been increased and stable in the 115-125/70-85 range, had been decreasing again during the weeks I was struggling getting down in the 100/70 range. (My BP was even lower when we started this journey...similar to your daughter's and sometimes lower.) But, my sweet spot for my BP is within a few points of 115/80. My other symptoms were flared too so the endo had me double my steroid doses for the last 4 days. Sure enough, everything is better, except my HR. My BP is up 10-15 points.So, even though my HR has not stayed down upon standing, my stamina to do chores/errands and dizziness are much better because my BP is more appropriate and stabilized again. Don't ask me what we are treating exactly with the steroids because we don't exactly know. The endo thinks I have sluggish adrenals but not full blown Addison's disease. We just know that tinkering with the steroids works for me. So my long-winded point is that finding an answer for a more appropriate BP might (who knows) be as important to dealing with the symptoms as bringing the HR down. I actually had a doctor's appt and weeded 2 flower beds when I got home today...that wouldn't have happened a week ago.
  10. I consistently feel better when I've been on antibiotics. It usually lasts for about a week after I finish the antibiotics and then my symptoms gradually return. I've tried to pin down an answer from several docs and honestly they have a few theories but nothing we can pin down for sure.
  11. There is pharmacogenetic testing that can be done these days by a company called Genelex/YouScript. You just send them cheek swabs. Some insurance will pay for this testing. There are several enzyme pathways that metabolize different medications. They have identified the genes associated with these pathways and what gene mutations alter the metabolism pathways and how....i.e. rapid metabolizers, slow metabolizers, etc.. Maybe you can consult with your doctor/s to see if they think they might be able to find better meds for you based on that information? http://genelex.com/youscript/
  12. Although it goes against everything I was taught about sleep hygiene from a specialist, I have to have some sort of noise that keeps my brain focused on it instead of my brain racing through thoughts, in order to sleep. So, I either turn on a Harry Potter movie on a sleep timer (which I've seen so many times I can recite them so I don't have to concentrate on the plot), or, I turn on my sound garden on the ocean sound sound on a sleep timer. Being able to distract my brain from racing is the only thing that helps me sleep. I've tried meds, no electronics for an hour prior, etc, etc and it just didn't work. I do think this is a complicated issues and that what works is different for everyone.
  13. In the meantime, there are two that are on the list in AU: http://www.dinet.org/index.php/physician-list
  14. Jane Qld, I'm at a doctor's appt right now but I'll send you 3 names later tonight via private message that a member sent to me for our physician list. They haven't responded so they aren't on the list currently. Katie
  15. Well, there's quite a few research articles out there on this: https://scholar.google.com/scholar?q=meditation+and+heart+disease&hl=en&as_sdt=0&as_vis=1&oi=scholart&sa=X&ved=0ahUKEwi2uYmsptjOAhVMPhQKHabsA6cQgQMILjAA
  16. I find meditation helpful. I don't do it as often as I should but I've been able to overcome most of the effects of adrenaline rushes using it so I don't experience the anxiety feeling that I used to get from POTS. Meditative breathing has become second nature enough that I find myself doing it without thinking about it at times when I start to feel presyncopal. A few years ago, my POTS neuro had pointed out a study they did evaluating the effect of meditation on chronic heart failure patients and it showed improvement in those patients. I posted it back then but I'll have to see if I can find it.
  17. Yes I do get chest pressure. It also feels like the vessels in my neck are constricted. And it progressed eventually to feeling like my heart was a water balloon that was going to burst. I have recently started mestinon (pyridostigmine ) and the most noticeable benefit from this med for me has been that these symptoms are 90% relieved although my heart rate hasn't come down yet but I'm still on a very low dose. I do also experience extreme fatigue and have been diagnosed through a daytime sleep study with severe daytime hypersomnia. It is severe enough some days that I feel like I've been given general anesthesia. I wish I had a good answer for you on how to deal with this but the only thing that works for me is to sleep until my body naturally wakes up. During these episodes, I also become shivering cold and can not warm up by any mode other than sleeping. When I wake up I am warm again and the anesthesia feeling has gone away.
  18. I love goats....especially mini goats....in pajamas! Lol!
  19. I don't know the name of the dye they have used, but I have had dye (iodine based I believe ) for several CT scans and for a CT angiography of my neck and brain vasculature. I did fine with it and I do have quite a few drug allergies. I am on multiple antihistamines and hydrocortisone daily, so I don't know if that made a difference of not.
  20. I can't take the direct sunlight at all. It is the same as a hot shower....vasodilating. And I also seem to have some mast cell reaction to it too. I don't know what meds you're on, but some meds also can cause photosensitivity which can express itself in all different manners, so that's something to consider. I would imagine, although I would verify with her, that the nurses concern was the high blood pressure, which can lead to serious acute complications. I think I would discuss the ongoing risk with doctors more thoroughly if you are considering more sunbathing and want to understand the risk (as opposed to "just stay out of the sun.")
  21. When I was tested, the nurses in the room conducting the test kept saying I was tachycardic. They called the doctor in several times. My HR had gone from 70's to 140's and stayed there the entire 45 mins. I was also symptomatic the whole time although didn't black out. Before I left the attending doc said to drink a 32 oz Gatorade and a liter of water daily and to follow up with my own cardiologist within 2 weeks. When I got to that appt, she said the report said everything was normal. I thank my lucky stars those nurses were telling me what they were seeing because I told her and asked her to get the raw data and evaluate it herself. Sure enough, when she did that, I had a POTS diagnosis (and a very mad cardiologist that the other doc had not properly evaluated the data.) This issue has come up before. I don't know what your raw data showed but if you haven't seen that information, you may want to get a copy and review and discuss it to make sure the report is correct. Also, I often don't have "qualifying numvers" of POTS when I'm at my doctor's office and he does a poor man's ttt but then other times, my hr shoots up and it's quite obvious I have POTS.
  22. Milliesgirl, Yes. Several doctors have dismissed my pain. They aren't my doctors anymore. I made a decision at one point in this journey that if I wouldn't have accepted a certain level of service from a vendor at my place if business, I shouldn't and wouldn't accept that level of service from my health care providers. Once I started managing my medical needs the way I managed the business I was responsible for, I started receiving much better care. If a doctor doesn't care to provide a high level of service, then I find one in that specialty that does. I'm ok with them saying they don't know but I'm not ok with dismissals. It was quite liberating to make that shift.
  23. I do experience this. My palms look like your's but my fingers do not become that red. Mine stay about the same as the coloring of my palms. This develops daily any time I am standing up. I will also experience some numbness if I keep my arms bent tightly for too long. I have to sleep with them fairly straight or the numbness and discoloration will occur. I have been checked Raynaud's and do not have that but I do have mild venous insufficiency in my arms and legs. That was diagnosed through Doppler studies conducted at my cardiologist's office. It has been attributed to my vascular tissue being inappropriately flacid due to my Ehlers Danlos Syndrome (EDS). Just as an aside, while I may have had very mild symptoms of POTS, EDS, and MCAS throughout my life, I was not diagnosed or disabled by any of it until I had tick borne illness back in 2007 when I was 32 years old. It was like the Lyme/Babesia allowed these other low lying issues to bloom. I hope you continue to make improvements and find more answers.
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