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Knellie

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Everything posted by Knellie

  1. @Sarah Tee - Thank you for your reply! I did go to an ENT, in fact he was the one who told me that since I haven't had any previous trauma, that I can't possibly have a CSF leak and that it was just a runny nose. I like what you said in the last paragraph though. I may need to find another ENT to see if he/she will be more competent than my last doctor, and then I can play it that way. I just wish I didn't have to walk on eggshells when asking doctors about specific conditions!
  2. Hey everyone! I am going to get an appointment with my primary care doc to see if he will test the fluid coming out of my nose to see if it is Cerebrospinal Fluid. I just wanted to see if anyone has any tips on how to ask? We all know that asking doctors to do tests like these can make them angry. I also wanted to know if anyone has ever had this test done before. I think it is called a Pledget study?? I am just worried because I have already been told by two doctors that a CSF leak is so rare I can't possibly have it and that I just have migraines. One of them just told me I had a runny nose, even though I get stuff coming out of my ears sometimes too. I just don't want this to be a waste of my time and money again. Thanks for any tips!!!
  3. @CJ65 - Thanks for the info! The nose thing I think is a CSF leak, where your dura (the thing that holds your cerebrospinal fluid) tears and fluid leaks out. This fluid can sometimes leak out of your nose or ears. It is usually only on one side. I have it running out of my right nostril all the time. I have awakened to my left ear wet a couple times. Your doctor can test the fluid coming out of your nose to see if it is cerobrospinal fluid. Cerobrospinal fluid is clear and dries like water. I hope that helps! There is a fb group called Idiopathic Intracranial Hypertension and Stents that is very helpful group for that. CSF leaks can also be caused by IIH, so you might want to see if that is a possibility. CSF leaks and IIH can closely resemble POTS symptoms. There is a doctor named Ian Carrol who is a doctor a Stanford University who talks a lot about how POTS can be a lot like CSF leaks. Here is a video of him talking about it: https://vimeo.com/283562633 I hope you can fix your nose thing! Whether or not it is a CSF leak, your nose running all the time its annoying! Good Luck!
  4. I recently went camping at 10,000 feet. While I was there, my headaches were so much worse. I also had so many more visual disturbances and got an aura like I was having a migraine like 5 times (that usually only happens to me like twice a year, I usually don't have auras with my migraines.) Also, my ears wouldn't go back to a normal pressure. It was like when you are on a car trip or plane ride and the change in elevation makes your ears pop and you can't hear as well? That was happening to me for days. Then me and my family decided to go on a walk. On that walk I started feeling very faint. I was huffing and puffing and the right side of my nose just was pouring fluid out of it. (That is the side of my nose that always has stuff pouring out of it when I exercise.) When I got back to camp, I grabbed my pulse oximeter. My pulse was of course high, but my oxygen was 76. I had to sleep all day after that walk because I wasn't really able to function after that. It was gorgeous up there and I love seeing all the animals and stuff, but are there any tips to help me manage my symptoms at that elevation? Also, I have been trying to see if IIH and/or a CSF leak is a possibility is a me. Does this sound like that? If I had IIH and/or a CSF leak and that got fixed, would camping that high be not bad anymore, or would my dysautonomia still make that bad? Does high elevation cause worse symptoms for y'all? Sorry I know that's a lot of questions. Thanks for reading!
  5. Where I live, it has started getting really hot, which is killing me. I already have "chronic migraines" as they call it, but the heat is making it so much worse because of my dysautonomia (today it is 98 degrees and is getting hotter😓.) I have taken Tylenol almost everyday in the past two weeks, which I know is a horrible habit, so I am trying to find some other ways to make my headaches better. So far I have tried drinking ginger herbal tea (which only makes me hotter, so that doesn't work great), a neck massager to see if it is a neck headache (it apparently isn't, but my shoulders and neck were so painful during that I was almost screaming), and drinking lots of water. Nothing has worked so far, so I was wondering if y'all have any good suggestions for headache remedies that aren't painkillers? Thanks in advance!!
  6. @yogini - When your hands/feet turn white, do they get cold too? If they do you could have something called Raynaud's Phenomenon. It is very common with dysautonomia. I don't think there is a treatment, and I don't think that it is "disease" in and of itself, but I think it is a symptom of something else (dysautonomia). Here is an article on it if you want to check it out: https://www.hopkinsmedicine.org/health/conditions-and-diseases/raynauds-phenomenon#:~:text=Raynaud's phenomenon is a problem,%2C stress%2C or emotional upset. I hope this helps!
  7. @artluvr09 - That sounds like Pulsatile Tinnitus. This can be an indicator for high intracranial pressure. Have you had your eyes checked recently? Your optic nerve is a good way to tell if you have IIH. Your optic nerve could be swollen from the pressure (called papilledema). If you don't have papilledema, then you can still have IIH. I really like this facebook group for info on it: https://www.facebook.com/groups/198904797135988 Also, this doctor does a lot of work on this, and this is his website. His name is Dr. Athos Patsalides. Link: https://www.athospatsalidesmd.com/
  8. @Pistol - Thanks for your reply! I didn't know you could ask your doctor to do that. Any tips on how to bring it up to my doctor?
  9. @CallieAndToby22 - Ouch! That sounds so painful! I'm so sorry. Thank you for answering, its nice to know that I am not the only one who feels this way.
  10. I'm sorry, I just need to vent, so you don't have to reply to this post. Today I went to and ENT to discuss a possible CSF leak. I have had headaches for about three years, and on top of that all of my POTS symptoms. I recently started getting a metallic taste in my mouth and drainage through my nose. I have pressure headaches and the pressure goes up when I exercise or bend over. When I bend over I can't breathe through my nose very well and the ringing in my ears gets so loud that I can't hear very well. My eyesight has been getting way worse and my vision gets blurry when I exercise. I had heard from many people that CSF leaks can mimic POTS and someone on this forum even sent me a video of a doctor from Stanford talking about it. I went to the ENT today and he literally told me that I had a runny nose. Ya, thanks a lot genius. I am glad you went to medical school to label people "runny noses" and then give them nasal spray. I could tell that he thought I was making stuff up and just pulling random crap off of the internet. I can't fathom why someone who is supposed to be educated would literally think that I would waste my time and money to go around and make up symptoms. I am so tired of people telling me I'm crazy. Oh yes, because when I am on the couch barely able to move and crying from an awful migraine that is killing me while I still have to do school work and take care of life I am making it up for attention. I have no idea what to do because I don't have any doctor to go to who believes me. All the good POTS doctors in my state are booked wayyyyyy out or won't take new patients. And, I can't just go to another state because I don't have the money to pay for a stay like that and insurance won't cover it. I just wish that someone would listen. What am I supposed to do now? Thank you for reading this if you made it this far. I am just so frustrated😣
  11. My mom was on Cymbalta for a little bit and it made her feel awful. I think it can be different for everyone, but for her and a lot of other people it has been very bad. I think you have to figure out what is good for you, but that was our experience with it.
  12. @Ashc - I like Among Us, Puzzledom, and Wordscapes as far as games. For more educational things I like Khan Academy for learning pretty much anything (but especially medical things) and Coursera for courses for adults.
  13. I have exercise-induced asthma and I was on propranolol for a while and had no problem with it. It just did not help my POTS at all so I got off of it after about a month.
  14. I have heard mentioned on this forum many times people getting infusions monthly/weekly/every 2 weeks, etc. I was just wondering what these are for? Are they just electrolytes? And how would I get my doctor to prescribe that for me? Do you get them at an infusion place or do you have someone come to your house and do it for you?
  15. Oh my gosh yes! I mentioned this to my doctor but she didn't really seem to care. It really bothers me though. I can't stand silence anymore, I always have to have music or something or else it just rings horribly and gives me an even worse headache than the one I already have 😐
  16. Hey Everyone! Today I got diagnosed with non-ulcer dyspepsia (NUD) after an endoscopy, four biopsies, lots of blood tests, and of course lots of doctors. My doctor specifically said, "This does not mean that we think it is all in your head, and this is a real diagnosis." I think I believe him in the fact that he doesn't think I'm crazy, but the more I read up on this disorder, the more I feel like it is just a giant question mark. He said it was super common in dysautonomia patients, so if that is true I was hoping someone could shed some light on this for me. He is going to put me on a higher dose of Omeprazole (40mg). I am just worried that this won't work and then I'll be back at square one. I am really discouraged because if this doesn't improve my symptoms then I'll have yet another pain and more stigma to deal with. My question is, has the Omeprazole worked for anyone with NUD? If it hasn't, what alternative treatments have you tried for your NUD? I am just crossing my fingers and praying that this works for me. Thanks for reading through my ranting, and thanks in advance for your answers!!!!! +
  17. Hello All-- I was just wondering if any of you have tried MSM gel/powder for your dysautonomia? I have heard some people say that its helpful, but I am not sure how it would be for dysautonomia, and it is kind of expensive so I would like to have some opinions on it before I buy some. Thanks!
  18. @Aghast - I don't get slurred speech as much, but I do have trouble forming words sometimes. I also have a lot of problems with word recall and with thinking. And fatigue only makes it worse. If I could find something to help then I would tell you, but I haven't found anything so far.
  19. Hi Everyone! I just had a question about some good supplements to take for dysautonomia. I get really achy legs and they get crampy, and I have heard this is a magnesium deficiency. So I take about 750 mg grams of magnesium a night, but I still don't get the crampy achy feeling taken away. My Mom suggested I eat more potassium, so I'll try that. But I just wanted to know what you guys take to help with pain, immune system, digestion, etc. Thanks!
  20. @KiminOrlando - Thank you so much!! I will definitely read through those!!!
  21. Hey Everyone! I just have a question for all of you with Mast Cell Activation Syndrome. You see, I have had eczema, "asthma" (not sure what it actually is, but that is what the docs call it. Albuterol doesn't help and when I have an "asthma attack" it feels like my throat is closing up and my throat burns. Who knows really?), I get stuffy noses often, and my doc thinks I might have eosinophilic esophagitis. I am not sure if these are MCAS symptoms. They seem like an allergic reaction to me but I really don't know much about MCAS. On top of that is of course the dizziness, headaches, tachycardia and myriad of GI symptoms. Can anyone give me info on MCAS and do my symptoms sound similar? I would love any info because at this point I'm desperate for answers. Thanks!
  22. @Sarah Tee - Thanks so much for the article. I really related to it. @Zach Martin - My doctor too recommended me doing Botox, but I wanted her to first test me for ICP. I hope Botox works well for you. I was worried about doing it myself because I didn't want it to throw me into a flare. I hope that we both find some answers soon, because it is infuriating to live like this.
  23. Hello again- As you all know, when you are diagnosed with POTS, your doctor tells you to do salt and fluid loading, but especially the fluids. I did the fluids for 4 months, drinking 96-120 ounces of water a day as directed by my doctor. I noticed in those four months that I got more frequent and severe migraine attacks. When I started drinking less water, I didn't get as many bad headache attacks. Now I barely drink any water at all, which I know isn't healthy, but it is what it is. I was wondering why this was happening? Most POTS patients feel better when they drink more water. Does anyone know why this happens? I tried to ask my doctor about intracranial hypertension but she brushed it off saying that a lumbar puncture would be too invasive. I get horrible headaches that feels like my head is about to explode. Also, whenever I bend over, I can barely breathe because of the pressure in the front of my head. When my BP goes up (like after exercise) I always can feel the pressure in my head and my pulse in my head. I also have tinnitus all the time. I don't know what to do anymore. No doctor seems to care any more. Any advice?
  24. Hey Everyone- I had a quick question. I have had palpitations for about a year, as is common with Dysautonomia. At the beginning of the year I had an EKG and a Holter monitor done, just to make sure that nothing was seriously wrong. My doctor diagnosed me with Premature Ventricular Contractions, but said that it was fairly normal and didn't think much of it. My Holter monitor results said that I had 1164 premature beats in 24 hours, which seemed like a lot to me but I guess wasn't a big deal. I was just wondering if any of you have specific diagnoses for your palpitations? I feel like they don't happen in specific patterns they just happen and it feels weird. It isn't my chief complaint but I was just wondering if any of you have been diagnosed with the same thing and how you manage it.
  25. @Alicat_326 - Wow, that sounds just like me!! I have super painful periods as well, although pain killers usually help. I too have the problem with my stomach hating everything I put in it. I never vomit but I get nauseous, bloated, stomach cramps, heartburn, indigestion, and regurgitation. I am actually getting an endoscopy in a couple of weeks for that very problem. I don't know if it is connected to my dysautonomia, but it did start around the same time so I would say probably. I haven't found anything to help other than some OTC antacids for the regurg and the heartburn/indigestion. Good luck
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