Knellie

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!

@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.

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?

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.

   @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  

   When I have panic attacks or a day with a lot of anxiety I also get a lot of neck pain. It may be a tension headache or it could be that you tense up your neck muscles. Breathing exercises may help with stress or these herbal remedies I like to take.  I am not sure if either of those things would work for you, but I know that when I am stressed on top of all my POTS symptoms, it is definitely good to get rid of the stress you have. But don't rule out the possibility of the high BP I think that is a good hypothesis. Good luck  

  @Pistol - Thanks for responding! I have not been diagnosed with small fiber neuropathy....who would diagnose that? Would it be a rhuematologist or a neurologist? Or could my GP just do it? Any tips on how to ask my doc about it?

Hey Everyone-

   I had a quick question. I broke my toe almost three weeks ago. The doctor told me that the sharp pain should go away in about two weeks but the pain in my toe is still really bad. I did put it in a real shoe for one day but I wore an orthopedic shoe all the other days. I also have a scar on my big toe from like six moths ago that hasn't healed and still hurts from when I sliced myself on a rock at the beach and I have a scratch on my other little toe that hasn't healed all the way and it has been like 2 months. I was thinking that since we have such wonky blood flow to our feet in dysautonomia that maybe that is affecting the way that my feet heal. Should I go back to the doctor about my toe or should I just expect it to take longer to heal? Have any of you ever experienced this slow healing in your feet before? Thanks in advance!!

Hi @TorturedSoul - I found these articles that might be helpful for you and your doctor. I think the third paragraph in the "Cardiovascular Reflexes" section will be the most helpful when you are reading through the first link. Good Luck! 

Link 1: https://www.ncbi.nlm.nih.gov/books/NBK402/

Link 2: https://www.vumc.org/adc/38918

Hey everyone-

    I keep having abnormally painful hunger pains, like every muscle in my stomach is cramping uncontrollably at the same time. That is the best way I know how to describe them. I mentioned it to my gastroenterologist but he wants to do an endoscopy to explore some possibilities. I was think that since we all have dysautonomia, which is a nerve problem, that maybe my dysautonomia may be causing it. Does anyone else experience this? Or is this just some symptom of all of my gastric problems?

    Also, my gastro thinks that I may have eosinophilic esophagitis because of my history of eczema and my symptoms. Does anyone have this? If you do, how did you treat/manage it? 

Side note: With the endoscopy, they usually use benzos or general anesthesia. Has anyone had bad experiences with either of these things? I just want to know what to expect.

  Thanks in advance!!

   I agree with the safe and proven exercise methods. I would also like to know some good POTS flare ups remedies/things to make them more tolerable.

Hey Everyone!

   A couple of days ago I broke my toe. It wasn't a big deal but the toe itself was of course swollen. When I stand up normally, my feet get really swollen, purple and cold, as is normal for POTS. But now my left foot (the one with the broken toe) is extra cold and swollen. When I stand up my right foot won't look that bad but my left foot will immediately swell and turn purple. When I sit down to elevate it, my foot won't get warmer, in fact it gets a lot colder. My foot keeps getting so cold to the point where my foot gets stiff and loses some feeling. It doesn't look swollen but it turns white. Is this like a weird injury related Raynaud's thing? Or is this a POTS thing? I have never been diagnosed with Raynaud's so I have no idea. Has this happened to any of you? Do you have any tips?

   Hi @angelloz - I am so sorry that you are feeling this way! That is the worst. I don't have a dry cough all the time but I do have a wet cough all the time, and the gunk gets lodged in my throat. It drives me nuts. I used to have a dry cough like that but my coughs are mainly wet now. I think that the chemicals in the masks we have to wear for COVID are bothering my lungs. I have heard a lot of people mention air hunger with dysautonomia, but I haven't experienced that myself. Do you have palpitations while you experience these breathing issues/cough? Sometimes my palpitations make me short of breath, but my doctor doesn't think much of it. I am sorry I can't offer much help, but I do understand what you are talking about with the cough. Do you also get a sore throat everyday? That is something weird I have. Anyway, I hope that you can figure it out. Best of luck!

Hi Everyone!

     For the past couple of years, I will get random smells coming in my nose that don't make sense with the environment I am in. I will smell smoke when there is no fire, or a strong smell of food when there is nothing cooking. It comes at random times, not just on bad days. It doesn't bother me a lot, but I was wondering if this is something that only I get. I am wondering if it is related to my migraines. Do any of you get it too?

  Hi @Hippopotsamus - I use Ginger herbal tea which helps with headaches and stomachaches. It always warms me up and it has no caffeine in it.

  I love to crochet! I have been crocheting for like 3 years.  I would recommend with starting out with single crochet and working up from there. I like a g or h sized hook. I find all my free patterns on pinterest or spruce crafts. If you have any questions I would be happy to answer them. 

 Here is a link to some good beginner patterns: https://www.thesprucecrafts.com/free-crochet-patterns-for-beginners-978084

   Hi! Welcome to the forum! I am so sorry that you have been feeling bad lately! I am not sure how helpful I will be, but I will try!

   I also wake up extremely tired, even more so than when I go to bed. I have found nothing to make that better, but I can tell you what makes it worse. I was on Amitriptyline for a little bit because my doc thought that it might help my migraines and it just made it so hard to get up in the morning and made me more anxious. I don't know if it is like that for everyone, but that was my experience with that drug. Also I found that if I sleep over about 8 or 9 hours I feel significantly worse. 

   I have all day everyday headaches/migraines. Mine also come with weird visual disturbances, brain fog, dizziness, lightheadedness, and fatigue. This sounds weird, and this may just be me, but when I drink less water, my headaches are much better. I used to drink upwards of 96 ounces of water per day as advised by my doctor. This would result in horrible migraines that kept me in bed for hours on end. Tylenol and Ibuprofen didn't really help. I am not saying that you shouldn't drink water, but I am just telling you what happened to me. You have to find what works for you. I also found that if I do to much that day that I feel worse, so pace yourself if you can each day. I have also found that ginger herbal tea can temporarily ease headaches, and it is also good for an upset stomach, which you say you frequently have. I have not tried peppermint tea, but I have also heard that that is something that can help headaches. Also, for headaches and migraines if you are looking for a physiological cause that may not be POTS, I would say to look into Cerebral spinal Fluid leaks, and of course an MRI of the brain never hurts just to make sure everything is alright. 

   I also have a HORRIBLE memory! I think what helps for me is writing down important things. Drinking water usually helps with brain fog, although it doesn't help my headaches. Also I have found that reading a book for a long period of time can make things worse, so if you are a book lover like me, then you may need to pace yourself and only read for a little bit at a time, or read before bed. I am not sure if that is something that you experience, but I know that helps me. 

   As most people with POTS, I do get dizzy when I stand up, especially after lying down for a long period of time. When I am going from a lying down to standing position I find that if I slowly do it in steps it helps. Usually I will slowly sit up, then sit until I feel less dizzy and then change positions, rest, etc. As far as heart rate goes, I don't experience that as badly as other people, but I heard that compression stockings/socks are really helpful. I use 20-30 mmhg and I just got them off of Amazon. I also have a pulse oximeter I got off of Amazon that helps me monitor my heart rate so that I can report to my doc. 

   The biggest thing I can tell you would probably be to find a good doctor who believes you and sympathizes with you. If you don't have a good doctor it is hard to get anywhere. Also you are the patient, so you know your symptoms the best. Don't let anyone talk you into thinking that you are making it up or into a treatment plan you don't like. 

    I am sorry that this post was so long, but I hope that some of that helps! I hope that you can find some answers   

@Pistol - Can you tell me the name of your rowing machine? I might buy one of those. Also, for all of you who say to cut out soda, do you think that diet sodas (like Coke zero or diet Coke) still hurt you or do you think those are okay?

Hey everyone-

     I hate to admit it, but in the 2 and a half years since I have had POTS I have gained somewhere around fifty pounds. I really want to lose weight but I don't know what to do, and hard core exercise makes me really sick. Do you guys have any advice about this? It is really frustrating. Thanks in advance!

  I have something similar, but not quite what you are talking about. My neck and shoulders will sound and feel like they are creaking like some old hinges or something. It is painful and I usually have to crack my neck after to relieve it. It's weird. I am curious that a lot of you guys know exactly what she is talking about. Good luck trying to figure it out  

  @Hippopotsamus - I get this weird thing where if I flip over in bed or if I get scared or I stand up and then lie back down when I feel really tired or am half-asleep then it feels like my body is vibrating and sometimes it feels like there is an earthquake going on. I haven't found anything helpful for it. Hope it gets better for you!

17 hours ago, Delta said:

 

My POTS treatment has helped mine. Are you taking any meds for dysautonomia, such as a beta blocker or other?

 

         I am not on anything for my dysautonomia. I am on omeprazole, but I don't take it super often because it doesn't help that much. I was on Propranolol for a while but it didn't help so I stopped taking it. I was also on Topamax for a little bit for migraines but it actually ended up making everything worse. I was also on Amitriptyline for migraines and it also didn't help but just made me really tired. What beta blocker are you taking? I will ask my doctor about it. 

   When I wake up I get blue dots in my eyes and feel really dizzy like I am going to pass out. I am not sure if that is the same thing as you. I have chronic migraine so I always have floaters and dots in my vision and I commonly see weird colors, so it is hard to differentiate that. 

   When you talk about eating liquid foods, what do you mean? Is that like protein shakes or soups or do you just blend up meal and drink them? Also, does your gastropariesis affect how much water you can drink?

@POTSAly -I am so sorry you haven't been feeling well! That sounds so much like my symptoms! I have been trying to figure out if I have Intracranial Hypertension headaches. I also had an MRI that came out normal and when I bend down it feels like a giant rock rolls to the front of my head and makes it hard to breathe through my nose. I get bouts of vertigo as well. I have headaches 24/7 and have been diagnosed with chronic migraines. I would advise you to find a doctor who is willing to listen to what you have to say. You should look into CSF leaks. That could be causing your symptoms. CSF leaks can sometimes mimic dysautonomia symptoms.