abnel

Thanks so much for starting this thread. I also need to vent. The last 3 weeks have not been good. I developed a bacterial gastroenteritis from contaminated water and every time I think I'm over it it flares up again, usually every 3 days. I was in the ER last night with breathing problems. It turns out my electrolyte balance is out of whack (potassium too low) because of the diaorrhea. This is in spite of me drinking lots of electrolyte drinks AND taking 2 potassium supplements a day because of Florinef. After this experience I would recommend to anyone with a chronic gastro infection to get their electrolyte levels checked, especially those taking Florinef which causes the body to expel potassium. My dad was just hospitalised on Friday after suffering 2 heart attacks and everyone in the family (even some friends) have already been to see him except me. I am very down about the fact I can't be there right now. I am feeling so weak from the gastro and the breathing problems that I don't feel well enough to leave the house. I am praying for a turnaround soon so I can visit my dad soon, before he gets home from hospital. I hope everyone's week improves as we're all going through a lot at the moment.

Lissy, I forgot to mention I have had allergy testing done by an immunologist for allergies to environmental factors - ie - dust mites, pollens, grasses, seeds, dog hair, cat hair, etc, etc, in my quest to find out what has been causing the breathing problems I've had for the past 8 months. Unfortunately it was not revealing in any way. I think it was a 24 skin prick test, painless and no adverse reactions. I came up in an itchy red welt for dust mites and dust (which I already knew). The welts went down under 24 hours. It was probably the least invasive testing I've had done for a long time.

I have been thinking of food allergy testing for a while now and was told by a nurse who works in an allergy department in a hospital that people shouldn't need to be tested for food allergies because if they are allergic it would be obvious (ie swelling, breathing problems, nausea, etc, fairly quickly after ingestion). However I have always thought that for most of us with dysautonomia it probably isn't all that 'obvious' because we have so many other issues going on. Songcanary, were your food allergies "obvious" or was it something you just decided you'd test yourself for? Were you suprised when you found you did have food allergies?? I just wonder how many of us here have allergies we don't even know about...

Thanks everyone, the electrolyte drinks have really helped. Sorry to hear you have this too Dizzyde I just checked out the ingredients for ensure and noticed it has milk product in it with lactose removed. It made me wonder if the milk could aggravate an already sensitive stomch. I just read discussions about it on the net - some people saying it's fine with gastro, others saying it's not. I might try a tiny amount anyway and see how it goes. I also found this link to information about what to eat/not to eat with gastro published by the Memorial Sloan-Kettering Cancer Centre in NY. Quite helpful actually - http://www.mskcc.org/patient_education/_assets/downloads-english/644.pdf

Thanks for the advice, esp re the himalayan sea salt which from my reading sounds promising and beneficial. As it's now Day 5 and I was getting worse my doctor suspects it's bacterial, but just waiting for the pathologist's report. Am hoping this will just go away because the antibiotics used to treat some of the strains can cause more fluid loss ... not what I need right now!

I don't really know the answer to your question and am hoping someone else (your doctor at least) might have an answer for you, but have often wondered what I would do if I was in your position. This might be a rather obvious suggestion and something you have already considered, but have you thought about taking licorice root? I understand that it has a similar mechanical action to Florinef. I don't know if the side-effects are the same/similar to Florinef but I suspect they are not as severe. I have heard of other members who cannot tolerate Florinef but have had some success with licorice root. If you go to the information page in DINET there is some information regarding licorice root. I hope you are able to find another treatment that agrees with you soon.

I was feeling pretty reasonable until recently, and was even able to go on the first (very) short vacation I have taken in years since getting POTS. But as seems to be my luck whenever I've taken vacations, I brought back some kind of gastrointestinal bug/virus. It probably didn't help that the property we stayed at ran on tank water with a treatment system from which we drank. I have spent the last 3 days feeling pretty crappy (excuse the pun). Have had a higher resting heart rate (over 100 BPM), the obligatory "runs", a stiff neck, achey bones, painful cramps through my whole digestive tract, and a fever (on and off). Have been surviving on a diet of dried biscuits as vegetables and fruit seem to aggravate things, but feel like the longer this goes on the weaker I am getting, also from undernourishment and de-conditioning. Are there any nutritional supplements you guys have been able to take that doesn't worsen symptoms when you have gastro? As an aside, since we've been on the topic of doctors recently, my doctor's surgery cancelled my appointment today saying there was another patient who was more urgent than me but he would call me some time later to discuss my situation. I explained I was also not well either! But when they called a second time to say the other patient needed to be seen, I didn't have the energy to argue. Sigh! So long story short I still haven't seen a doctor and am continuing to wait for my doc to call.

Hi London, I am definitely worse in the heat and the humidity. Many of us on this forum seem to get worse with weather changes. Where I live we just experienced one of our most humid summers on record over the Christmas/New Year period. Some days I couldn't leave the house as I couldn't breathe when the humidity was over 85%. I was still working at that point and I was nearly passing out walking out of the air conditioned building to the un-airconditioned car park. I was particularly miserable when it got to nearly 100% humidity and it was in the low to mid 30's celsius. I hope the weather improves greatly and soon for you and others out there who are suffering.

Hi Brethor9, sorry to hear you are experiencing the headaches too. I have been on 0.1mg florinef since March this year although initially I was on 0.2mg florinef and getting pretty bad headaches. Once I dropped it back to 0.1mg the headaches went away. I was also initially quite agitated and more anxious. I think my heart was even spiking more during exercise. But over a one month period the feeling of agitation calmed down as my body adjusted to the drug. The major benefit for me has been a reduction in the severity of the light-headedness and pre-syncope. This is apparently one of the symptoms it alleviates best, according to my POTS specialist. Also, my resting heart rate has come down a few notches which is particularly noticeable at night when I am trying to get to sleep. I think this is another potential benefit of the drug for those who experience inappropriate sinus tachycardia. In general, I think my orthostatic tolerance has improved and is noticabely better in the morning. You've already listed the major cons, which include the headaches and agitation. Perhaps you could give it a few more weeks to see if your body adjusts and hopefully you'll just be left with the benefits. Best of luck.

I am thrilled for you!

Before my POTS diagnosis and way before I had any POTS symptoms I used to drink around a cup of coffee a day. Even back then it had me bouncing off the walls and my heart would race at night and I couldn't sleep. But it wasn't the same as the 'sick' POTS fast heart rate which I have now. Back then it never made me feel unwell. Caffeine is what triggered my first major POTS symptoms back in 2009. It triggered the fast heart rate and the 'wired feeling'. Unfortunately the sinus tachycardia has not really gone away, but it has calmed down a bit over time. Now I avoid coffee like the plague. Other stimulants like tea and ginseng can trigger bad palpitations.

I am on 3000mg sodium chloride daily (which I am told is not enough) plus I eat lots of salty food during the day. Prior to the salt tablets I had terrible brain fog and mild headaches daily after a 3 week bout of flu virus. It really turned it around for me and the brain fog and headaches stopped within a week. Over time, maybe 2 months, I noticed that my daily tachy episodes between 12noon and 2pm were not as severe. I used to be extremely tachy around that time of day and I felt awful walking out of the office at lunchtime to get my lunch. I used to force myself to go for a quick 5 minute walk even though my heart felt like it was going to leap out of my chest. I am lucky that the salt tablets helped me as I don't think they work for everyone, but it's definitely worth a try to see if it helps you. Also, just be warned that they can give you an upset stomach in the first 2-3 weeks (maybe longer) until your body gets used to them.

Hi Caterpilly, I am on 0.1mg Florinef and I have read medical information that advises that in a certain percentage of people, Florinef causes their bodies to loose potassium. My POTS specialist never bothered to check my potassium levels for the first few months while I was on it. I ended up having a major breathing crisis where I was sent to Emergency where it was found I had low potassium levels. I now have to take potassium supplementation. Even with potassium tablets I still don't have what is considered a normal healthy potassium level for someone of my age, such is the effect of florinef. Even though I still have breathing problems it is not as severe as it was in those weeks leading up to the day of hospitalisation. So not sure if it is coincidence re the breathing issue, but I would strongly recommend getting your potassium levels checked for the first few months. One of my doctors explained that lack of potassium in the body can cause a whole host of issues, including breathing and heart issues. As for salt, I continue to take exactly the same amount of salt as I was taking prior to Florinef. I have not been told not to and I have read that it is important to keep taking salt as Florinef does not work as well without it. I also take electrolyte drinks as needed. Interestingly since I've been on Florinef I don't notice as much when I've accidentally missed a salt tablet. Best of luck with the Florinef, I hope it helps you.

Leize, I am so sorry you had to find out in such a difficult way. I am in a similar position to you and recently left my workplace. It was one of the hardest things I've ever done, because I had to come to terms with the fact that a job I really enjoyed was making me sicker. In coming to my decision I had to recognise that the work itself was great, the politics not so, and the environment terrible. I was terrified when I first quit, but I am the happiest I have been in a long time since coming down with this illness, as I am finding a new quality of life that was missing while I was slugging away at the office all day feeling awful some of the time. I hope you can find some peace and contentment as you go on this journey of reinventing yourself.

Hi Yuliya, Both my husband and his mum have benign tremors and they both have some form of dysautonomia. I think tremors can be one of the symptoms of dysautonomia. It is genetic and runs in their family. The severity of my MIL's tremors has waxed and waned over the years, worsened by stress, doing too much repetitive movement with her hands or too much strenuous work. My husband's tremors come out when he grips onto something too tightly for too long and does repetitive movement (ie mowing the lawn with a whipper snipper). I hope that yours will calm down for you soon as it can be very uncomfortable and sometimes a bit scary, especially when they intensify within your body also and the hand tremors are an outward manifestation.

1. shortness of breath - sometimes related to weather changes, heat, humidity, exercise 2. mild to severe chest compression &/or sensation of heaviness in back, spine, legs, etc. 3. heat and humidity intolerance 4. exercise intolerance 5. tachycardia and intolerance to emotional stressors Prior to taking Florinef in March 2011 my worst symptom was light-headedness and pre syncope, but Florinef has really helped with that. I also had severe chest compression 24/7 for the first 12 months but this started to ease up in the second half of last year.

Lieze, I've always suspected that I had some kind of meningitis. Is there any way to test for it now? It's been about 2 years since I had the virus, and I've always wondered what it was. I never went to see a doctor. At the time my husband told me I was being silly worrying that it could be meningitis so I never bothered to see a doctor. Silly me for believing him when I should have trusted my own instincts!

Yes, I have tachycardia at night also. It is not as bad as it was when I first got ill, but I am still aware that my heart rate is faster than it should be at rest. I can hear my heart beating when I am trying to go to sleep and it is very annoying sometimes.

718mom, I am sorry you are feeling so poorly at the moment. I just have a question for you about Florinef. When you first started taking it last year -did it take a while to build up in your system and for the effects to be felt? Or did you feel instantaneously better on Florinef? I just wonder because I have heard that for the occasional few, it can take a long time to build up in their system and for the effects to be felt. Someone posted a while ago (either or this site or another) that they stayed on it for 6 months and felt nothing until the 6th month. I just wondered whether this could be what's happening for you...

I wish I knew the answer to this question. The virus that hit me was one I have never experienced before in my life. I never used to get headaches, but I had severe pain in the back of my head that spread all the way down my spinal column. I was in pain for 3 days and nauseated, running a fever - going from freezing cold to boiling hot in seconds. None of my doctors think it was CMV or Epstein Barr virus. Although my blood tests show I have had both of these at some point in my life. Two weeks before getting the virus I had just flown back from a vacation in the tropics. They tested me for Dengue fever and Ross River virus but I was negative to both. My POTS developed slowly and insidiously after I recovered completly from this virus. I have not had these viral symptoms since. My POTS symptoms are nothing like the viral symptoms. It feels to me like this virus, if that's what it was, damaged the nerves in my nervous system in my spine. I have never had any POTS symptoms in my entire life until this 'virus' hit me.

Firewatcher, just wondering if the Poll can be tweaked for those of us who don't quite fit the criteria. I had a virus but then had gradual onset over 5 months before POTS hit me with full force. I would be interested to know if there is anyone else who had gradual onset after a major event.

My ice vest has helped me many times during the hot summer months where I live. Ventilation vests might suit your needs better if you do not have access to a freezer. I found this website www.ventilationvest.com regarding vests that are battery powered, look much nicer than the usual cooling vests, and cool the body using a system of small fans. The company is based in Germany and they got back to me within a few days of sending an inquiry. They do ship to other countries but you'd have to ask them specifically about the country you live in. They told me that the vest starts to come to its limit when the temperature reaches around 35degrees celsius. Where I live it gets to over 40degrees, so I wasn't sure how helpful it would be for me. If you decide to purchase one of these, please let me know how you find it as I am still thinking about it, but not 100% sure I'd like to get one as I already have a cooling vest.

Good question - I wish I knew something that could help. The only thing that helps me is rest (reclining) and time. Does anyone do anything else that helps to shift this feeling?

Thanks Casper for asking this question - it is a really interesting topic. Yuliya, Dani, Naomi, Frugalmama - can I just clarify one thing - did you have POTS before you got pregnant? Or did pregnancy cause your POTS/dysautonomia?

This is one of my most debilitating symptoms. I get it now whenever I push myself beyond what I think are my limits. It doesn't take much. When I first came down with POTS I couldn't even bend over to reach for plates to make myself something to eat, or to pick up something off the floor without triggering extreme weakness, especially in my chest area. It sort of feels like you are dying. It is horrible. I am so sorry you are going through this. I hope it improves for you over time.