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Everything posted by Poohbear

  1. I hope you find something that helps and works for you!! We are each unique even though we share similar symptoms and life trials so I think you will find you have to try different things and see what works best for you. You didn't mention if you were looking for medications or non-medication approaches. If you are looking for medication approaches then, in my experience and research, Have you had any catecholamine testing with your POTS medical workup? If not, it may be helpful to have this testing done (just do some research and find a facility that know how to do the test properly--I forget the exact protocol but you have to avoid certain foods, meds & activity for a period of time before the test. At the beginning of the test they insert an iv and draw blood and then I believe you lay down for 15-30 minutes in a still and calm environment and they may draw blood again from the iv somewhere in that time frame then they have you stand up for a few minutes at the very end and draw blood again. It's important to know what your levels are standing vs. laying down because that potentially gives you answers about whether or not you have any abnormal catecholamines causing issues for you (some people with POTS do and some people don't because there are so many reasons why people have POTS). Anyhow....if you have excess of any of the catecholamines that may help determine if/which meds you might tolerate best. I believe Lexapro is supposed to be one of the 'cleanest' SSRI's. The other suggestion I have if you decide to try medication to assist you---try to get medication in liquid form and start with very small doses--at least 1/2 the strength of what a Dr. would typically prescribe for a new patient (many people like us are extremely sensitive to meds) For non-medication approaches....I agree with trying to recline when processing trauma memories. Also try to do some deep breathing work. Would it help to maybe get a product called therapy putty (comes in different colors for different strengths) if you recline to help control the POTS symptoms but get a flashback, rather than moving your whole body perhaps using a product like the therapy putty would give your body something to do and a way to release some of the energy/need to move that you feel while at the same time remaining relatively still so you can control the autonomic symptoms. I also think it's important to take things slowly and make sure you allow your body 'recovery time' after a therapy session. Especially for intense sessions it may take a day or so for your body to calm. It's a delicate balance to try to work through memories so they don't keep haunting you and so that you can release them but at the same time doing it in a way that doesn't throw your autonomic stuff into too much chaos. If you can find a therapy technique that doesn't require you to talk about those memories then you might try that because that might be less triggering to the ANS system. Those have never worked for me but again, everyone is different and it's worth exploring. I wish you the best on your journey to health and healing!
  2. I think forums like this are good and that there is more awareness in general over the years but I don't see many Dr's training and treating these disorders and I don't see the 'specialty centers' (as a whole) taking steps to add or replace the experts, many of whom, are near retirement.
  3. Oh....and on the drug shortage issue.....there's a shortage of normal saline. Why? Because there are only a couple of manufacturers and they say the profit they get for producing it is so small that it's not worth it to bump up production. Makes me furious because it's such a simple but life-saving medical supply and these phamacutical companies should not be allowed to let this type of shortage happen EVER on such a supply as this.
  4. I totally agree with what you are saying. I clearly see it here in MN. For over a year there has been a huge undertaking and planning for Rochester--Mayo calls it 'DMC' short for destination medical center and the whole focus is on wealthy cash-paying customers (many who come from overseas). They say it's because they will be getting less money from insurance so they are looking to make it up somewhere. I've seen many changes here this past year many of which, like you, I believe are not good for many people. It's a lot of greed driving things and I think we are just digging our own grave as a nation the way we are headed. You are right...it's all profit driven and that is true everywhere. People are always surprised when I point out that for a long time now this clinic here has not had a muscular dystrophy clinic. Why? It was costing them too much. There are a few of the Dr's who were in that program that stayed but many of the services went away when they got rid of that clinic so now those patients have to go to Minneapolis or somewhere else for care. It's just sad and it scares me to think what will happen when all these great specialists retire.
  5. I have been diagnosed and dealing with POTS/Neurocardiogenic syncope for 20 years but it's only been the last 10 that I've been followed by "true" autonomic specialists. I've recently lost the one specialist who was most helpful to me for many years (that person left the country). I look at some of the well-known centers and I am fearful for the future of our care. 3 of the 4 autonomic Dr's at Mayo MN are retirement age or past it and 2 or 3 of the autonomic Dr's at Vanderbilt are in similar situation and these centers don't seem to be doing anything to add younger Dr's. who are going to be there for us in the long haul. Does anyone else see this as I do? Anyone else worried about their future care? Anyone out there have any 'inside' info on whether these existing programs intend to remain strong and add staff?? Sometimes I feel hopeless about the future (in the regard to knowledgeable, helpful, medical care) because after all these years there are still so few Dr.'s that truly understand these disorders or how it effects our quality of life.
  6. Check out this link http://www.healthgrades.com/provider/john-dercola-2vvls. John is a PA but he has extensive experience with POTS and dysautonomia patients and being a PA he spends more time with patients than the Dr's. He's GREAT if you can get in. You would probably have to see a Dr on the first visit but when you call to ask if you can set up an appt. make sure you let them know that you want to ultimately work with John because you've heard that he has experience with POTS. Best of luck to you!
  7. Is there testing for mito disease? Yes there is testing but no cure--muscle biopsies and genetic testing mostly to diagnose. If you had malfunctioning mitochondria it would most likely be secondary form of disease (due to chemo) but still the supplements might provide some relief.
  8. My port lasted 6 years also with weekly usage (I had to access with each use because I'm allergic to all the adhesives and dressings) 2-3 times a week. Some ports do last a long time BUT most manufacturer's recommend replacement after 5 years so you may want to consult with the mfg. of whatever port your Dr is placing to ask what their recommendation is. At some point, if you use it often it will need to be replaced because the "bubble" you poke will wear down--it can only be stuck so many times before it starts breaking down. Having said that, like E Soskis said, if you take care of it and are able to avoid infections it should last for years. As for flushing it, yes it's necessary but I did all my own maintenance....I gave myself the fluids I needed and flushed the port as I needed to and hardly ever needed a nurse to help me access it---I did most everything on my own after I was taught.
  9. Best of luck to you with your surgery and healing!!
  10. I don't know that anyone here can tell you definitively that chemo causes autonomic issues but it certainly makes sense that it could be the root cause for you. Chemotherapy does a lot of damage to the body and has some long term side effects and damage. In addition, the aging process seems to increase the number of people who develop Parkinsons and other neurological based conditions that have symptoms of malfunctioning autonomic nervous system too. Again, we aren't Dr.'s here but I think you might be interested to research some supplements that help the mitochondria of the cells. I have an underlying mitochondrial disease and there is no cure for that but supplements help the cells function better. The 'mito cocktail', as it's called, varies some from person to person but generally speaking it's extra doses of Vitamins B complex, C, Co-Q-10, alpha lapoic acid. I also take levocarnitine because I'm deficient in it. I think, in cases like you describe, it's worth a thorough evaluation in the beginning to rule other diseases out. Then, manage the symptoms the best that you can. I'm sorry this is happening to you!
  11. Merlin, I'll be thinking about you as your go through your evaluation. I completely understand the nerve wracking and worry that goes with the territory. I'm sending my best wishes to you; keep us posted!!
  12. I've always had similar issues to what you describe with eating. We are all different so I don't know what the answer is for you but you aren't alone!! For me, I react much worse with carbs (especially in the morning) and I can't eat much quantity either. I tend to eat an egg in the morning and from there I kinda 'snack' the rest of the day--literally just a few bites of something here and there. I tend to eat my biggest "meal" around 3pm (because I don't work and have the ability to do it that way) and then around 6 I'll have a snack that is high in protein &/or fiber. I too find that if my blood volume is not up (i.e. not drinking enough water) that my symptoms are worse. Have you tried adding some cornstarch to a food item in your meal to slow absorption of sugar? That is helpful for some people and if you haven't tried it yet it's something you could think about.
  13. Thank you Chaos! It is a scary thing to deal with these choices about treatments and surgeries. It looks like I'm in a category by myself since I've not been able to find anyone else with autonomic issues who has also dealt with treatment and mastectomy so I'll certainly check back here to share my experiences in case anyone else ever runs across these issues. Thanks for the hugs and prayers
  14. Thanks MightyMouse! I am looking at having to have double mastectomy and would like reconstruction. It will involve multiple surgeries but the first one is the scariest and longest 8-10 hours. I'm most worried about being under anesthesia that long. I don't handle it well and I've never been under that long. I know to expect the extended recovery but I'm also afraid that all of this will throw me into an autonomic flare. It's all a bit overwhelming right now.
  15. I have a pretty severe case/symptoms with POTS and I'm now facing the decision to have mastectomy. I am looking to speak with anyone who also has POTS that has gone through this....anyone on this site been through this?
  16. I've never had a problem in any state that I lived in getting the placard but I also have a pacemaker and multiple conditions so perhaps that made it 'easier'. If you feel your Dr is hesitant then put it in terms of safety and energy saving--- for example that you need to reserve energy while grocery shopping so that you can safely drive home and get your bags inside without passing out. For me, being out and getting the groceries was making me sick and 9 times out of 10 I would have to pull off the side of the road before I even got home because my heart rate would be so high and my vision would start greying out and I felt like I was going to pass out. Then, when I'd finally get home I was so sick that I couldn't do any more than get myself in---couldn't even bring the groceries in the house. Some Dr are afraid or hesitant that you will decondition yourself more if you don't remain active. I've always explained to my Dr's that I exercise--at home, around my neighborhood etc. but when I'm out running errands I need to be safe and that's not the time/place in my situation to get my 'exercise'. What state are you in? Each state has very different rules for applying. Have you downloaded the application for handicap placard in your state to see what the requirements, fees etc. are?
  17. I had a port for iv fluids after multiple hospitalizations, picc line problems etc. I had my port for 6 years before it failed and had to be removed. I chose not to replace it for a host of reasons but primarily because I have no where else for placement other than jugular and didn't want to go that route. I had some issues with the port (mostly because the surgeon who placed it did a very poor job) and I had some pain and discomfort from time to time but overall the benefits outweighed the negatives. Generally, if you know your need for fluids is ongoing and more long term, the port is a safer way to go as there is less risk of infection than with picc lines. Best of luck to you!
  18. Dr. Shen is one of the best Dr's I have ever seen and he totally understands POTS. I can't say if he will have other ideas for you but if anyone could help or have new suggestions for you he would be at the top of that list. He used to be in Rochester but they made him chief of Cardiology in AZ so he moved down there. He's very personable and you're so fortunate to have gotten in with him. Best of luck to you whatever you decide!
  19. I agree with the other posters on this topic. I've had several EEG's throughout the years. None of them have been a big deal (except perhaps the sleep deprived EEG). They won't have to shave any of your hair but the glue can be difficult to get out. Some centers use a gel that washes out pretty easily so it may depend on what your clinic uses. If you find it's hard to get out then use some olive oil or mineral oil on the glue--let the olive oil sit on the scalp a few minutes. Take a fine tooth comb and get the chunks of glue out that you can and then wash you hair. This is one instance where you might want a shampoo that is good for stripping hair of build up (like Prell if you can find it anywhere) and then use conditioner on your hair after that if you need to.
  20. Arrrggh!!! I feel like a nut, FINALLY today we had some temperatures and wind chill that is above 0 (not by much but certainly improvement over -25 with wind chills down to -50! I went back to the Dr to have my labs checked today and learned that my TSH is now too low (6 weeks ago it was too high). We didn't make that big of a change in my medication last time so I don't understand why there is such a big difference in my levels. I also can't tell what is causing what. It certainly felt like it was my dysautonomia that was causing the wild and rapid shifts in body temperature during this extreme cold that was causing mild hypothermia. Now that we aren't in the extreme brutal cold I'm having an easier time staying out of hypothermia but I still get these 'hot flashes' (which after having my TSH results back today I'm thinking the thyroid has some role in all of this). So...in the end I think I'm dealing with 2 separate problems that overlap---the intermittent hypothermia that makes me feel hot when my temp drops mid to low 95's and then hot flashes in general that are being caused by the thyroid??? I'm frustrated with all of this. I was on a thyroid replacement that worked well for me for many years but it was recalled this spring. Ever since I had to switch brands/manufacturer's it's been constant problems. I just don't know what else to do but I am so tired of this 'trial and error' with new dosages and mfg and tired of feeling AWFUL. Has anyone else here had similar issues? What worked for you? Thanks for sharing, listening and letting me vent
  21. I now live in a cold climate and can relate to what you are going through! If you get to where you can't breathe and your inhalers aren't working then you really need to go to the ER--you can have life-threatening asthma attacks and cold weather is a trigger for many asthmatics. Aside from that, try not to breathe in too much cold air--use a scarf to cover your mouth and nose and that can help some. When you come indoors try using a moist heat pack on your chest or back and see if that helps. You could also try a hot pack when you go outdoors (I sometimes get one of those therma-care packs and place it between layers of my clothes (so that it doesn't burn my skin but is still close enough to give me the warmth). As strange as it sounds, you could also try doing some stretching of your back, shoulders and arms before and after getting out into the cold--cold constricts everything so opening those spaces and stretching are not total solutions of course but may bring some relief. I hope you find something that helps
  22. So sorry! I know it's frustrating. There are so many insurance companies and varying policies that there is no way a Dr's office or hospital could keep up with all the various policies. Even within an insurance company there can be many different policies with different rules and coverages. It is always up to the patient (at least here in the U.S.) to contact the insurance company to find out what will or won't be covered. Dr's offices CAN sometimes help in the appeals process though. One thing that might help in your appeal is to include any medical journal articles that support the use of the procedures you had for patients with your diagnosis. You really have to build your own case which is sad because most of the time people are sick and don't have the energy to fight the companies the way they need to be fought with. Best of luck to you!
  23. Does anyone have an update on this issue? To bad someone doesn't have an answer from the insurance company making this choice on what test they WILL cover to diagnose autonomic dysfunction.
  24. Most insurance companies only approve IVIG and/or plasmapheresis for a certain diagnosis (POTS is NOT one of them on the list)
  25. I've had problems like this off and on. In my case, it was actually caused from dry mouth (which surprised me because I didn't FEEL like I had a dry throat). What helped was sucking on something sour--lemon drops for example. The sour should naturally produce more saliva which will in turn be enough production to coat the throat and should reduce the cough. I don't totally remember the medical explanation but basically it has something to do with the fact that the valve at the top of the esophagus is much more suseptible to being irritated when dry AND it doesn't have the protection that the valve from the esophagus to the stomach has so just a tiny drop of saliva (if your throat is too dry) kinda acts like a startle reflex instead of being a smooth swallow. Also experiment with some mildly warm liquids and see if that is better for you. Lots of times people with these types of swallowing issues do worse with liquids that are too hot or too cold. I hope you find some relief soon!
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