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  1. Yesterday
  2. I feel for you Kat. It's really hard to adjust to losing so much physical capability; hard for you first and foremost, but also hard for your family. I think Sarah's suggestion to take your partner to your appointment with Dr O'Callaghan is a good one. My wife came to my tilt table test and that was a big eye opener for her. I also found it hard not being able to play with my kids the same way I had done previously. Importantly, my kids understood that Dad was sick and I found that over time I was able to find other things I could do with them that were within my physical limitations. In regard to your job, there a two key things I would recommend: 1. Check the Fair Work Australia website in regard to your rights and termination of your employment due to ill health: You can also call Fair Work (or your union, if you are a member of one) if you need to check on your rights. 2. Ask your superannuation fund if you have income protection insurance. Most people do as it is provided by default. The insurance will provide you a replacement income if you lose your job, or if you run out of sick leave. The rate of payment is typically 75% of your normal salary. Finally, try to stay strong! You will have hard days, but for many people POTS gets better over time. When I first got POTS in 2011, I lost so much physical ability and I was essentially bed bound. As a result I had to take a year off work. Slowly but surely things have improved and I have gotten a lot better. I returned to full-time work in 2013 and I'm fitter now than before I got sick. It's a slow recovery and I found that I had to accept that and focus on having the best life I could. Best wishes.
  3. My vision has been rapidly getting worse, I used to have perfect vision, but within the last few years my far sightedness has just gone to poop. I know it's not glaucoma, but I wonder if my POTS is related to my vision issues, I do also have a 14 mm pineal cyst too though, who knows.
  4. Last week
  5. I fainted recently during acupuncture but definitely had a dream. The combination of the pain..then fear set me off and my body just reacted. Cold sweats, nausea and dizziness and then my hearing faded and I fainted. I definitely didn't fall asleep. I don't know how long I was out for but how is this even possible? I can't remember the dream but do remember it was a pleasant one with quite a few people in it. I was not conscious at all of my surroundings while I was out.
  6. Clb75-Thanks for all the info. I didn't take benadryl or prednisone. Both really increase my irregular heartbeats and tachycardia. I'm finally feeling a bit better today, but I have never experienced that kind of pressure pain before and my brain literally felt hot. My Dr. never got back to the infusion nurses or me on how to treat or help it. Kinda frustrating. Atv least it's better now. Don't know if I'll go through it again though. Is the IVIG working good for you?
  7. I'm sorry you are going through this. With everything else we deal with, I thought our eyes were one of the few things we could count on. Is your glaucoma something they are going to be able to treat or will it be uncontrolled because of the POTS? I have had POTS for 30 years. I get the field tests done every year and my results have been 'slightly abnormal' but unchanging. I didn't know anything about this, but I will mention it to my doctor. He told me he was watching me for glaucoma, and several of my family members have had it, but I didn't know POTS could be involved. Thanks for sharing this. I hope they are able to stop the progression for you. Kim
  8. I have been dealing with POTS for some 2 decades. I have just been diagnosed with Glaucoma--wide angle low tension. Some of the risk factors for this unusual type of glaucoma seem go along with POTS--orthostatic tachycardia; migraines; bloodpooling, etc. I was wondering if anyone here has been diagnosed with this type of glaucoma--particularly those who have had POTS for a number of years as the effects of hypotension can be cumulative. I might also suggest that you be vigilant in getting visual fields testing.
  9. I think some people find a cause, but many of us don't. I got this following a virus, that's all I know. All of my tests other than the tilt table came back normal. During the first few months I saw many specialists, went to the Mayo Clinic, etc. Most doctors don't understand POTS at all, but even the experts can only do so much because the science is still developing. It is much better now than when I first got sick 10+ years ago, but still developing. After I didn't find any clues I shifted my energy to trying different medications and forms of exercise. Many of the treatments are the same regardless of the cause anyway. It took some experimenting and hard work, but I am much better now.
  10. Hang in there, Kat. Things will get better, this illness requires a great deal of strength and courage which your displaying every day. Would your partner be willing to go to your specialist appointment with you? Sometimes it can help if a doctor explains the complexity and difficulties that are faced with this condition.
  11. Thanks Kalamazoo and Macca, its getting really hard for me at the moment I'm about to lose my job because of this stupid illness and possibly my partner. We have been through a lot in our relationship and this has sort of sent us over the edge and trying to look after my 10 year old on a daily basis when I am having a bad week is so hard because I can get so cranky and all I want to do is be back to normal and kick around a footy with him or play cricket with him and at the moment just playing a card game and getting him ready for school is exhausting at the moment I really hate myself and the life I am living and the life I missed out that I should have lived while I had the chance!
  12. I'll definitely get the results, but Dr. Gibbons is supposed to be the master in this area (Boston) , so I don't know who I'd take the results to. I am very curious about the low BPs during the test. I guess those are "okay". They never did draw blood during the test. I'm hoping I can get someone who's good at figuring this out. It has to be autonomic with the temperature, sweating, BP, tearing, etc. issues.
  13. I had to turn towards homeopathic and functional medicine to get true explanations and doctors who would look deeper than a standard test. Unfortunately medical tests only show results for diseases doctors can prescribe something for. Often issues happen long before they show up on traditional tests. Non-allopathic docs understand this. My cause was a brain injury from a fall. However I've learned I had quite the imbalance in my body before the head injury which created the perfect storm. Ive greatly improved my energy by altering my diet and taking only natural supplements and herbs to deal with brain fog, palpitations, etc. prescriptions only covered up some symptoms without addressing the true issue at all. I still have my bad days but they are getting fewer and farther between now that I've maintained a consistent treatment protocol for the last 3 months.
  14. I use OptiMag Neuro for my magnesium drink twice day. I hope to not be off legumes forever but I am for now to ensure a healed gut. Legumes are very rough on a stomach and if you have leaky gut (which leads to leaky brain) legumes make it much worse. I'm slowly reintroducing beans so we will see if I'm ready for them.
  15. Hmmm.... I am curious what they call normal. Would they give you all of your BP and pulse readings and any O2 readings taken during the test so you could take them somewhere else? You may have to pay for them. They should have drawn blood at the end to check catecholamine levels, which may be key for you. I know it is frustrating. I passed out in my TTT and all I was told was to get on a treadmill because it was deconditioning. It was years later before I found someone to help me. Keep at it. Kim
  16. Generally I don't sweeten tea, but I usually make really strong tea (3-4 bags in a small pot) so the flavor is usually enough for me. But if I have a sore throat I do add in honey. Maybe maple syrup or molasses can work for you if you are able? Alternatively you might look into a "sugar free coffee syrup" recipe. There are many different adaptations. A simple vanilla bean syrup..maybe blackberry would be good in some teas too? Ooh. Now I have to try this. hope you find something you like.
  17. Hi Katcanny Sorry to hear that the Midodrine isn't working for you. While it is disheartening to have nasty side effects, there are other medications that Dr O'Callaghan can and will try for you. I didn't have the best reaction to Midodrine either (though not a severe as yours) and when I went back to Dr O'Callaghan he noted that we would work through the list of drug options until we found something that worked and that's what we did. A drug that has been excellent for me is Mestinon. Dr O'Callaghan normally doesn't prescribe it, but it was happy to let me try it. All the best.
  18. I am also obsessed with tea, i drink it all day but i found out i cant use honey anymore, what do you sweeten your tea with? And I'll have to grab some hibiscus tea, that's the only kind i don't drink right now. Monkey. What kind of magnesium drink do you drink? I was seriously considering taking some fish oil as well because of my high triglycerides cause by my pcos & insulin resistance but ive been vegan for so long im really not sure. How come you don't eat legumes? They're a big part of my diet
  19. My primary said that the TTT results are simply "normal". That just cannot be. All of those hours of testing and everything was great? I know my blood pressure was low, even at the end of the test when I was leaving after sitting for a while, it was below 90, and my heart rate was high. The questionnaire they gave me raised a ton of red flags. I can believe no POTS but seriously everything is supposed to be like this?? Maybe they don't read the questionnaire if you don't come up with POTS??
  20. I'm the queen of alternative methods of treatment. I am currently doing Field Control Therapy (FCT) and it is helping a lot. I also do Frequency Specific Microcurrent which is also wonderful! I've also done neurofeedback. I do brain exercises three times a day and a night time amygdala calming exercise. In addition I've changed my diet completely (no gluten, nuts, sugar, legumes, dairy) and I take supplements that include a magnesium drink twice a day, ALA, fish oil, neuro and O2 support for my brain and blood and liver supports. It feels like my whole day revolves around maintaining this disorder but the alternative was days in bed. The only issue I still struggle with is weight loss and inability to gain. I'm severely underweight now which worries me.
  21. I'm not sure if this is helpful to you or not, but I am a big believer in the benefits of tea. I tend to use hot tea for most of my day to day ailments. For example, hibiscus tea is known to lower blood pressure (definitely not good for ALL potsies!). I always have swollen lymph nodes (not sure if it's related to pots) but I use a Tumeric & ginger tea that usually calms my throat. Peppermint calms the stomach..Chamomile is great for insomnia. Dandelion root is really good for digestion! And, of course, green tea for energy. As a bonus, drinking a cup of hot tea will usually calms my non-stop migraine for at least an hour or two. I usually add a shot of apple cider vinegar and squeeze a bit of fresh lemon for each of their added benefits. Hope you're having a wonderful day
  22. My cardiologist didn't run the TTT, the neurologist (Dr. Gibbons who isn't following up with me) did. There was no blood drawn. I wasn't taking anything that could change my levels, though I wasn't really being treated before my TTT (nor now, except for the metoprolol I'm back on), just taking supplements, some of which did seeem to broke. But, my BP is always higher when I'm stressed from traffic, parking, etc. so it would be hard to see my real stats. I don't understand how my body can bring up my BP when I'm annoyed but when I'm sitting here 76/50 and nauseous on the floor... it can't? I was hypertensive most of my life so I feel lousy even at 100/70. Other meds have given me edema, so maybe that's why it hasn't been recommended. I'm also not seeing anyone who would likely prescribe it... my primary doesn't get it and my cardiologist just wants to fix my heart. I think he tries but doesn't really understand autonomic issues. He has no idea why I'm hypotensive and tachycardic. Thanks for the encouragement! I will keep pushing... I just want a doctor I can trust who understands this. I should have my results in hand today. I don't expect POTS but if nothing autonomic came up I'm going to scream. It just can't be.
  23. It's amazing how medication can affect us so much. I'm sorry this bothered you =/ I hope they can help you another way
  24. Thanks Kim,dancer65 and yogini! I was up from 12:00am with shortness of breath until about 4:00am which was then followed by a cold sweat either going to vomit or faint tachycardia and then felt so shaky and horrible! So by then time it got to 5:45am when my partners alarm goes off I was awake and a mess! My mum took me to ER and they contacted my specialist who said not to keep me in hospital it would make me worst? (Maybe the laying in a hospital bed) and so I was there checked over and sent on my way! I am so over feeling this crap but I did get another appointment with my specialist as soon as next week so that's a bonus! Try and take something positive from this experience! So to reply I don't think I will try midodrine again it didn't make me feel better I was out of it for the four days I had it and I never break out in hives or any rashes ever and it made me so irritable and angry at everyone and everything! Not one that works for me!
  25. Wow, thank you all so much for the support and replies! I really appreciate you taking the time to respond. I'm sorry to hear others have gone through this, but also encouraged to hear that some are feeling better! Kalamazoo- I'm sorry that Yaz seemed to cause this problem for you. I also believe it was the major factor in my illness. I've heard of many women getting very ill from Yaz. RichGotPots- Thank you so much for all of your suggestions! I am definitely going to look into those suggestions. It means so much to get some insight and support. I've been trying to figure out my next steps and this has been very helpful!
  26. He thinks you have too many catecholamines based on the blood he drew during the TTT? This shouldn't be a guess. They were able to measure mine. They can mess up the draw and skew the results or meds can interfere, but my doctor didn't 'think' he knew. He knew. He has also retested years later by making me stand in his office for 10 minutes and brought someone from the lab over to draw blood when and how he says. Evidently, this test is very sensitive. The difference for me was that I did the TTT without being on any meds and was drinking normally with normal salt intake. I think when we start treatment before we get an official test documenting the situation, it doesn't show true results, so maybe doctors don't see it as being as debilitating as it really is. I am hypo POTS and had a high level of catecholamines due to a med I was on. It is possible. I went off the med and the catecholamine levels dropped. There are other ways too. I went to a well-known hospital for diagnosis initially and couldn't even get put on Florinef. Sometimes you just have to find someone else. I ended up at Vandy and the first thing they asked is why didn't ***** put you on Florinef? The Vandy doctor just shook his head and wrote the script. Things only got better from there. It has been 10 years of trial and error since then. All we do is treat the symptoms, but I think that is all they can do. Sometimes asking the right questions can spark action. Why am I not a candidate for Florinef? That would let them explain how it works and why it won't work in your case. You may already know the answer, but it gets them thinking through the process, and it lets you know their reasons. The first place I went was more worried about my BMI than whether I could stand up. I knew to dump him. Don't give up. Kim
  27. Did you feel better on midodrine at all before you got the hives? It seems hard to know whether the midorine caused the hives because you didn't get them the first time you tried the medicine, rather 4 days after. It is a short-lived drug which I don't think builds up in your system. If your doctor says to retry it, this may be the reason and maybe it is worth trying. Unfortunately it can be a bit of a process to find the right treatment - no easy answer for most of us. Hang in there.
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