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Everything posted by Lemons2lemonade

  1. Sjogrens can come with small fiber neuropathy and dry eyes. Hope you get it under control, sending prayers!
  2. Having some fear is very normal, I just decided if I was going to die, there really is no good place to do it so I might as well be out doing something...just as long as it's not an activity that can hurt anyone else
  3. Google foods to avoid with high blood pressure and eat them
  4. I fly often and it doesn't feel good. I always feel bad when the door closes and cabin pressure changes. But, to date no major issues besides discomfort. Also, I chug a water bottle before take off
  5. Dr. Chemali is in Norfolk, Va. It's not super close, but it's drivable He has an autonomic lab there.
  6. Yes, for me standing exercising always aggrevates it about 1.5-3 hours afterwards. I swim now instead and it is a much better option for me. When I had pots symptoms exacerbated, it would always escalate at sunset. I do get lightheaded from sitting long periods of time and get lightheaded without tachycardia. For me standing still is a lot worse than moving around like housework etc. And yes, there are good and bad days.
  7. Yes, but when my heartrate was that high there was no way i could do cardio. I started by just doing leg lifts in bed and forcing myself to sit up/stand. It probably took about 3 months of doing that before i was ready for any cardio. For me i had to do a slow transition into exercising. It's hard at first but it gets easier as time goes on and it takes a lot of courage, persistence, and determination. But it is totally worth it in the end.
  8. The first line of defense is salt and water. If that doesnt work, you can always talk to your Dr. about florinef/fludrocortisone...i don't know alot about ivrabadine or how they would interact together. For me the salt and water didn't cut it. Neither did metoplerol(beta blocker), or midodrine. I definitely avoid garlic though not sure if you are using that in your new diet...i actually started eating garlic before being diagnosed thinking it would help me...ha. Basically any food people with high blood pressure are supposed to eat you may want to avoid. Also for some reason pedialyte made my chest tightness a lot worse. Coconut water and revive vitamin water are my go to's now. I really like the revive because it has b12 in it which feels like it gives me more energy.
  9. I wonder if there is some sort of tie between broth and the immune system. They always say chicken soup helps with colds, in mexico it's beef broth, in vietnam it's pho. That means multiple cultures around the world are using broth to feel better during illnesses. I wonder if this has something to do with how broth is made--usually with bones and inside bones is where the bone marrow is. The bone marrow is where white blood cells are made that fight infection. I know people say its just the salt and fluids but i wonder if there is something more to it.
  10. Thank you Corina, my POTS is doing well and is under control and i want to have a baby! I am still taking florinef daily and am getting ready to ween off of it. I have moved recently and get to see Dr. Chemali in Norfolk, Va (i guess he opened up a full autnomic lab there), and am hoping he can guide me through the whole pots and pregnancy thing as that is uncharted territory for me.
  11. Hi Lilly, I am sorry you are having so many issues going on. Its never fun when our bodies rebel against us! There are different doctors who treat dysautonomia but from the sounds of what you are experiencing you may want to see a neurologist and an endocrinologist. I found that learning about my disease and diseases in general which could be causing symptoms helped me learn about and eliminate other things when i didn't know what i had via online research. Also, when these events happen, keep a journal with dates and times of what you are feeling and try to describe it the best you can--talk about what it is you are feeling. When these episodes happen, use a thermometer to take your temperature, and check your pulse--count it for 60 seconds and that is your heart rate. Record that data in your journal. Normal resting heart rates can range from 55-80 beats per minute depending on your fitness level. You can also buy a blood pressure cuff online if you would like and record those values during episodes as well. When these episodes happen try taking your heartrate and/or blood pressure with changes in position: lay down for a couple of minutes, then take your pulse for 60 seconds and record it. Then stand up and take your pulse. If the pulse raises past 30 beats per minute and stays there or if your blood pressure drops by 30 mmhg that can be a tell tale sign of dysautonomia that you should inform your doctor about. If they are normal thats a good thing, one less thing that could possibly be wrong. As for your symptoms, it sometimes helps to understand how the body works to understand what may be causing your problems. From what i read it sounds like your chief complaints are nausea/confirmed gastroparesis, episodes of hot burning skin sensations, weakness, buzzing sensations in your ears, low blood sugar, dizziness, pcos, at least one confirmed indcident of low cortisol, and sometimes diarrhea. When you go to a doctor, that is the list of symptoms you should present them with. So, as far as understanding your body mechanisms i will go through them one at a time. Nausea is very non specific, there are a lot of things that can cause it. In fact having a low am cortisol level can cause nausea. Having gastroparesis could probably cause it as well. If they have looked at your gi tract and not found anything other than gastroparesis its possible that what you are experiencing is not originating from your gi tract. On that same note however, a full workup of the gi tract would include much more than just a barium test. It could include a colonoscopy, checking your pancreas both through imaging and also its enzymes, checking fecal occult for blood, checking for intestinal parisites, checking your liver enzymes, checking for gluten sensitivity, and also checking for lactose intolerance--these tests can help to eliminate the gi tract as a primary cause for your symptoms and in my opinion, its important that you do that to rule out a gi origin. It is possible that all these things you are experiencing are related and its also possible that you are experiencing different symptoms from different and separate causes. Once the gi tract has been ruled out you can begin to look other places. If the gi tract is not the cause of nausea, it could be your cortisol levels, your thyroid levels (tsh, p3, p4), other hormones, a brain abnormality, dysautonomia, a tumor somewhere its not supposed to be, anorexia/bulemia, anxiety, heart abnormalities, seizures, a viral or bacterial infection, drug withdrawl, and/or a variety of other things. This is why it is so hard to find a specific cause for nausea--it can come from many different places. As far as treating nausea itself, the drug zofram works wonders in my experience. The hot burning skin sensations can be caused by a few things. The first is neuropathy. This is when the nerves in our bodies become damaged either by an autoimmune process(ehlers danlos syndrome, marphan syndrome, lymes disease etc) injury, or poisons such as sugar (diabetes), alcoholism, heavy metal(such as lead), or other toxins. That damage to the nerves can cause a burning and hot feeling and if the nerves to the gi tract are damaged, can also cause gastroparesis. Neuropathy is diagnosed by a neurologist. They do what is called a QSART test and also a nerve conduction test. These tests detect abnormalities in the nerves themselves. If the burning and hot sensation is not caused by a nerve abnormality, it could be caused by your blood vessels overdilating. When the blood vessels dilate they open up. This causes a release of heat and water molecules leak from the blood vessels into the skin causing us to sweat. So if we are sweating--they are dilated. Things that can cause this are blood vessel abnormalities, hormones--especially adrenaline, dysautonomia, pots, anxiety, and also neuropathy. When we we experience fear(whether real or imagined) or have a death threat to our bodies either from an external source (car accident, lion chasing you, etc) or an internal source that prevents glucose and oxygen from reaching our brains ( heart attack/problem, bleeding to death, low blood pressure, low heartrate, low blood sugar, starvation, lung collapse etc) it causes our bodies to release adrenaline to try and survive in those situations. Adrenaline changes how our blood vessels are dilated and also how forcefully our heart beats--the beats become stronger. It causes massive amounts of glucose to be released to the muscles(so that we can run away from the lion or lift something heavy that may have fallen on us) and this causes the muscles to shake. It also increases how quickly we breathe to deliver more oxygen to the brain making us hyperventilate. It can also make us very nauseous which is why some people throw up after a stressful incident. Your incident in the bathroom could have been caused by adrenaline release. These can definitely be caused by dysautonomia, but could also be caused by anxiety(through the vagus nerve), or many other things. I know adrenaline rushes can be very scary, especially when you dont know why they are happening and it feels awful--but just remember, your body is doing exactly what its supposed to do to help you survive--thanks body!! The buzzing sensation in your ears could be caused by a problem with your ear, or it could be a sign of a seizure, nerve damage, an anomoly, heavy metal posioning, malnutrition, or dysautonomia. I have POTS and my ears ring and the sound goes in and out quite often. I have also read about a lot of people with dysautonomia who do get buzzing but I have never experienced it first hand. Neurologists test for seizures by doing what is called an EEG and that may be a test you consider doing as well. As far as the hormonal imbalances go, those levels are regulated in various parts of the body. They begin in the brain in the hypothalamus which is also a major player in adrenaline responses. The hypothalamus oversees all of the hormonal and autonomic responses for the body and is located in the back of the head by the brain stem just above where your head meets your neck. From there, they hit the pituitary gland which is next to the hypothalamus in the brain. From the pituitary gland those hormones can go many different places such as the adrenal glands on top of the kidneys--to release adrenaline--, the thryoid which is in your neck, and various other places. Since you are having so many weird symptoms and hormonal imbalances a brain mri may not be a bad idea to make sure those things are in good working order and that you dont have a tumor, congenital(birth) defect, or something called a chiari malformation. This is where the brainstem gets compressed due to a birth defect and can cause all sorts of autonomic and hormonal problems. At the end of the day, there could be many things that are causing your issues and for me, i had all of those things checked. If i were experiencing those things, based on what I know, my guesses would be hormonal problems, neuropathy, autoimmune disease, seizure, anxiety, chiari malformation, or dysautonomia. I hope that helps and that you are able to find some relief. Sending lots of positive vibes!
  12. I have beau's lines on both of my thumbnails
  13. I loved acupuncture. It really calmed me down and relaxed me. I also get massages now periodically that also help me relax. And this might sound kind of lame but i have found crossing my arms helps with my lightheadedness.
  14. Hi Kalamazoo, I have been reading your posts and that is really interesting about the inflammatory process indicated. I hope they look for and find what is causing it...possibly something autoimmune? Are your joints hyperflexible? I know no one looks forward to that, but at least you can get the right treatment to actually help your symptoms. Sending positive vibes!
  15. If you aren't working, try getting on medicaid/obamacare if you can.
  16. I used to have this problem and my ssri helped with it. No longer taking the ssri and don't have it anymore.
  17. Yes, it happened to me and for me an ssri helped with this.
  18. Mine actually does this thing now where I get a click in my chest and then my whole body just relaxes and actually kind of feels pretty good. I dont know, its weird.
  19. If you aren't driving, laying the seat back or putting one or both legs up on the dash helps me :). I also always cross at least one leg as a passenger.
  20. My pots is under control but i get numbness in my hands and arms ALL THE TIME. Its really annoying and happens almost every morning when I wake up.
  21. Hi Kdub, I had that happen to me when i was taking midodrine. I'm not sure if the midodrine caused it or not because even after stopping it, it would still get low sometimes. But while on the midodrine it dropped down to 38 at the lowest and would hang around 45-50 and improved after i stopped taking it. Perhaps my ssri dosage also impacted this because i reduced it and it got better. I would say anything below 45 consistently merits an er trip and try to get admitted for bradycardia if you can--if they dont have an answer try to get them to admit you until they find that answer. I have said things before like, "well if you don't know what is causing it, i would like to be admitted so that the cause may be found" I would also like to add that you are definitely not alone. Depression i am sure gets us all at times and even normal people. Try to focus on the positive as best you can and sometimes you just have to sit back and perservere through the worst. Sending lots of hugs and love. You can do it!!!
  22. I used to do all the prep work sitting and then bring a chair to sit down on in the kitchen while things were cooking
  23. Who here has either weaned off of florinef or gone through a pregnancy while on it? What was your experience like?
  24. It feels like i could sleep forever at times but i always end up forcing myself out of bed at around 10 hours.
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