kmichaelson

Hi Naomi and everyone, Yes, I do have dizziness constantly, and I totally feel for you! I've had mine for about 2 1/2 years, but I was just finally diagnosed with POTS in October. I can totally identify with going to the ENT, neuro, etc. for answers to no avail. Unfortunately I haven't found much that helps. I've tried antivert, but that doesn't seem to do much for me. My neurologist thought I was having vestibular migraines, so I tried some anti-migraine meds as well, but that was before I knew I had POTS, so really I think POTS is at the root of it. Actually this morning as I was trying to get out of bed and feeling extremely dizzy and nauseous, and thinking about why this is so bad. Like others have mentioned, I feel like it's an issue sometimes of my eyes trying to focus or refocus. A doctor I went to once noticed that my pupils react very differently to light (during the test where they shine a light in your eye), and I was wondering if a lot of my dizziness is due to my eyes not working together properly to focus on things. It seems like this could be a function of the autonomic system... anyway, just thinking 'out loud' here. (Edit: I would say the eye issues would be in addition to the blood not reaching our heads since we know that's an issue, but again, I'm just typing as I think.) This constant dizziness is definitely my most troublesome symptom, and I feel for you for having dealt with it for so long! I hope working together on this forum, we can find some relief!

Ah, thanks to both of you for the quick responses! That totally makes sense because my fingers are total blocks of ice! Thank you.

Hello all, I have a pulse monitor that also reads my blood oxygen levels, and I've noticed lately that my blood oxygen is reading as lower than it should be. Often it's reading that it's in the 80s and normally it's supposed to be between 97-99. I don't know if this device is accurate or not. It's one of those that just clips onto the tip of your finger. Does anyone else get these low readings? I do have shortness of breath when I do even limited physical activity, so I wonder if this could be an accurate reading or not.

Same here, I especially mix up words and get tongue-tied. Sometimes it just takes me forever to get something out! I only take Florinef, so for me I think it's mostly the POTS brain fog & fatigue.

Hi Alicia, I'm sorry you're having such a difficult time. I've been very isolated lately as well for the same reasons you mention. I actually couldn't go to my family's Thanksgiving last week because I was so sick, and I just can't get out and socialize very often because I get so dizzy and it's exhausting. Like you said, it's even hard to make conversation sometimes--I feel like my brain is moving in slow motion compared to how I used to feel. However, when I am able to do something social, even if it's hard and I'm tired afterwards, it makes me feel so much better emotionally. I'm fortunate that I'm not affected by smells and chemicals the way you are. This might be a dumb suggestion, but I wonder if you'd have an easier time if you were somewhere where you could get fresh air more easily. For instance, maybe you would feel better if you could socialize in an outdoor setting where the air isn't being recirculated, or if you are indoors, maybe you could go outside for fresh air occasionally to refresh yourself. I don't know if any of these would help, but I'm just trying to think of things because I know how you feel. Like you said, it's hard to explain to people WHY I don't feel well enough to do things because this isn't an illness most people understand. Also, I often accept an invitation to do something, and then I end up not feeling well enough to actually do it because the way I'll feel is so unpredictable. I'm sorry I don't have better advice, but this is something I'm still struggling with as well. At least we can talk on this forum to people who understand--that means a lot to me these days.

I'm not sure if my dizziness is worse during the cold months, but I absolutely hate that I can't get myself warmed up no matter what! My hands and feet are always like blocks of ice, and I have major trouble moving my hands when it's so cold. (I don't know if it's a circulation thing or if I have something else going on with my hands.) Then if I wear gloves or warm socks when it's cold, my hands and feet get really burny and itchy (I think from blood pooling?). It's so annoying, so I'm totally with you on hating winter!

Thanks Ruby and Chaos! I'm currently seeing a cardiologist that is really nice and he's on this site's good doctor list, but he's not exactly a specialist in POTS either, so I'm not sure if I should see someone else or not. I have an appt later this week, so I guess I'll know more by then, but I'm certainly not improving yet after a month on Florinef, and the more that I read, it seems like it's really important to know the type of POTS you have to treat it effectively. Also, just to clarify, I've had the tilt table and all that, and my bp dropped to 40/25 during it, but my pulse didn't go up significantly; however, just monitoring my pulse myself and at doctor visits, it ALWAYS goes up at least 30 beats when I stand, often above 120, so I was surprised that didn't happen during my tilt table. I'm sorry you've had such a roller coaster of treatment, Ruby! Are your symptoms different now that your blood pressure is high instead of low, or do you still feel about the same (because it's still autonomic dysfunction)? It's frustrating to know that doctors are at a loss about our disease so often.

As others have said, your nurse or doctor should ask you to communicate any symptoms you're feeling during the test. I had a lot of symptoms that I wasn't sure if I should mention because for me they are "normal," like my feet went numb after awhile, but I did say something about it and the nurse later said that it was my blood pooling before my bp dropped. Don't be shy about communicating anything you're feeling because I think that there are things that we don't consider that 'abnormal' to us that actually are symptoms of POTS or NCS! Unfortunately I did feel really sick and nauseous during mine so I can't give you any comfort there, but having the test was so worth it because I was finally able to know what's been causing me to feel so horrible for so long! Also, as bad as you might feel during it, like others have said, you're being monitored by medical professionals, so at least you're in a safe place. Good luck to you and I hope you get some answers!

Edit: I mean POTS with all caps in the subject line--oops! Hi all, Sorry for what is probably a really basic question for you, but I see many of you referencing the type of POTS you have (hyper, combo, etc.), and I was wondering how you figure this out. Did your doctor inform you as to what type of POTS you have, or is there information I could find that would help me figure it out? My pulse goes up a lot when I first stand (like to 130) and then after I stand for awhile my bp drops. (Plus, I normally have pretty low blood pressure.) I was just diagnosed about a month ago and started Florinef, and I have my first check-up with my cardiologist this week, so I'm just trying to educate myself as much as possible and figure out what to ask him.

I'm not positive which kind of POTS I have, but I just had to reply because I have that feeling of water in my ears as well, and you're the only person I've ever seen who has it as well! Did yours just start with Florinef? I've had mine for about 12 years since I had a sinus surgery. I wonder if it's a sinus issue or if it has to do with Florinef helping your body retain water... sorry, I'm no help. I've also just started Florinef and it hasn't yet made a difference for me. I'm taking .1 mg as well, and I don't know if I should ask for a higher dose or try something different. Good luck finding answers.

I'm so sorry you had to waste your time, energy, hope, and money visiting this doctor! I can totally emphathize with you. It's so discouraging to prepare for an appointment and get our hopes up that something can be solved or helped, only to have our symptoms minimized and to be told there's nothing to be done. I can't believe the doctor asked if you could get over to the side of the road--like that makes how you're feeling okay if you can pull the car over every time you feel awful!

Mine is usually about 90/60, but I've seen it as high as 130/80 (soon after standing) and as low as 42/25. Snuff, when my bp was 42/25, I wasn't completely passed out though I felt completely horrible, so I believe you could be walking around with it at 65/38, though I bet you didn't feel great! I need to get a bp cuff because I wonder where my bp is when I'm feeling crummy. Edit: I just found this blood pressure chart on what is considered high, low, normal and what symptoms are associated with the different levels. According to this chart, I should have been in a coma/dead, LOL. So maybe it's not entirely accurate, but it least it gives an idea of what is considered dangerously low: http://www.vaughns-1-pagers.com/medicine/blood-pressure.htm

I actually just started taking magnesium a few days ago because my cardiologist recommended it, but I wasn't sure what the benefits would be. Thanks for all the information! How long do you think it took before you noticed an effect from it?

Hi Julie, I don't have bleeding gums quite like you've described, but I do get sores/scrapes on the roof of my mouth that last forever! I think part of the time it's like canker sores or mouth ulcers, but also if I eat something like toast, as you described, the slightest scrape becomes a bit sore that lasts forever. I've been theorizing that my immune system is attacking my body (autonomic nervous system, joints, gums?) since my illness began with EBV and CMV, but I don't know for sure if that's the case. By the way, since I started using toothpaste without sodium laureth sulfate I don't get as many sores as I used to. I don't know if this would help you, but it's definitely worth trying because I know how annoying it is! I use a type of sensodyne that doesn't have SLS, but there are also herbal/natural types of toothpaste without it. Like you, I've never had any cavities either, so it's weird to have so many gum problems. I take florinef, but this all started long before that.

Mornings are by far the worst for me as well! Like Julie said, as soon as I wake up, my mouth and eyes are extremely dry. In fact, it's hard to open my eyelids because they're often stuck to my eyes because they're so dry. The moment that I move at all, I hear a 'rushing' sound and feel extremely dizzy. I don't know if the rushing sound is blood rushing to or from my head...? It sounds like blood rushing to my head, but I don't know. Because I'm so dizzy when I wake up, I usually prop myself up for awhile before I get up. I'm always extremely tired and unrested too, no matter how long I sleep. When I get up, I've noticed my feet really hurt. I don't know if this is from blood pooling or what, but they're always sore when I first walk in the morning. I'm also really stiff and almost numb for awhile, like I don't have normal mobility for a couple of hours. Plus, I'm still really dizzy for hours, so I'm pretty useless in the mornings for awhile! I wonder if anyone has any tips for preventing any of this or dealing with it?

Hi and welcome to the forum! I'm pretty newly diagnosed as well and still trying to figure out what will work for me as well. I've just started Florinef about a month ago and I haven't felt much difference (if any) yet. I'm sure you've been told to drink lots of fluids, have lots of potassium and magnesium, and plenty of salt. That's about the only advice I know to give, but I totally sympathize with you and feel the same way. It's so hard to get used to not being able to do what I once could! Good luck to you on your visit to Vandy. I've been thinking about setting up something similar at the Cleveland Clinic. I hope you find some answers and some help.

Hi Katie, My palms are the first to get swollen and itchy too! It's only when it's really bad that it goes to my fingers and my whole hands/wrists. I get a bit of it in my feet occasionally too, though usually my feet are either freezing cold or burning up (when I lie down at night). It's always an adventure, though, to see what's next!

Hi Dani, I totally feel for you! Dizziness is my worst symptom for sure, and I have it every day. Like you, I have both actual dizziness and unsteadiness/dysequilibrium. It's so tough to function this way. Does anything help your dizziness that you've found? (Sorry for threadjacking! Please feel free to PM me.)

Thanks for the input and advice, everyone. I don't have disability and haven't yet applied for it, but I'm starting to think I probably should. I was just diagnosed about a month ago, so I wasted a lot of time feeling bad and not knowing the cause of it. This has definitely interfered with my ability to work though; I just don't know if legally I'll qualify for disability. I don't know anything about it actually. Unfortunately I don't know if there's really anyone else I can talk to in the human resources department. This woman may have thought she was being comforting by saying she had this too, but it felt really belittling to me. It was frustrating because she acted like she really understood what I'm going through because she has the same diagnosis, but she was so far from understanding it's not even funny. I'm so freaking exhausted today, it's tiring just to hold my hands at the computer. But I'm really grateful for all the understanding people on this forum. Sometimes I don't know what I'd do if I didn't know there are others out there who understand what this is like.

Hi everyone, I've been trying to arrange a schedule with my work that I can manage so that I can keep my job, and so I've been talking a lot with the human resources department. I sent my tilt table test results to my HR rep just to document my diagnosis, and then when I went to meet with her the first thing she said was "Oh yeah, I have POTS too!" in a really happy voice! She also told me that "fortunately it doesn't affect [her] work" like it's affected mine. I don't mean to minimize the trouble anyone has who has gone through having this, but from what she said, her experience with POTS involved passing out once while shopping. While I'm sure that's a scary experience, it's not the same as feeling affected every single day--being dizzy constantly, exhausted, having digestion problems, etc. that keep you from going about your life every single day. I didn't want to get into a contest with her about who had the worse symptoms, but I tried to get the point across that my experience was different than that. She also said that it's a good to have it diagnosed because it's very treatable. So far that hasn't been the case for me either. Maybe I'm just being overly sensitive, but I felt like she was basically saying that she could cope with the disease but I couldn't. (Also, the result of the meeting was that they can't really make any accomodations for me.) Even though I know what I'm going through has really changed what I'm physically capable of doing, this made me feel like I'm just weak or a baby for letting this disease interfere with my life.

I think I've been getting pooling in my hands lately, especially after I go for walks and if I have gloves on. What I have is a bit different than what everyone has described so far. My hands get really itchy/burny and swollen and bright red. Maybe it's not pooling, but it feels like the blood is rushing there.

Yes! I have extremely heavy, painful periods, and these symptoms started when I started getting POTS symptoms. Actually, when I was a teenager, I had my period for months at a time and had to go on birth control at 13 or 14 to stop it! Now, I don't have anything nearly that constant, but I spot from ovulation until my period, and then I have an extremely heavy, painful period. My cramps are actually like full-body cramps during my period my doctor has said because I get incredibly nauseous and throw up and have diarrhea from all the prostaglandin in my body. I don't know if this is related or similar to what you've been going through, but I'm convinced there's some link between dysautonomia & this.

I almost started a topic similar to this, but I'm glad I didn't since yours is so much more articulate and knowledgable than anything I could have posted! I confess, I don't know most of the acronyms or medical terminology I've seen in this thread (I just recently found out about my POTS & am still learning), but I've had a pretty messed up immune system as well. I have recurrent EBV and CMV (both mono-causing viruses), and I think I've had a sinus infection my whole life pretty much. Other things that I think are linked are that I get canker sores/ulcers in my mouth every few weeks (which I've read can be related to immune problems), lots of joint pain, and I get a sore throat and achy/feverish feeling most days when I'm tired (like CFS symptoms). Also, I have a lot of digestive problems, like IBS... dunno if that's related and endometriosis. Basically I feel as if my immune system is attacking my own body and causing a lot of this, but I haven't actually seen an immunologist to be able to back this up. When I was tested for mono, my antibody levels were actually extremely high, so that makes me think it's almost an overraction of my immune system. Anyway, I certainly don't know as much about it as others in the thread, but I wanted to chime in!

I have definitely noticed this as well! At first I thought that maybe stress was just getting to me because I'm so much more tired than I used to be, but I have really physical responses to stress as well. Like my heart feels like it's going to explode, I'm dizzy, shaky, nauseous, etc. I feel like I just cannot think or handle things sometimes! It must have something to do with adrenaline like others have said--it's like my body is really overreacting to the slightest stress. Also, as others have said, just talking with people and getting involved in an animated conversation seems to have a similar effect. I don't feel nauseous and shaky when this happens, but I get very dizzy when I talk to people for a long time (like more than a few minutes). It's like the effort to focus wears me out. I wonder if there's some way to prevent this or deal with it when it happens, because I can't go my whole life without encountering stress or having conversations more than a few minutes long!

That's a really good idea to take pictures, Katy! I'll have to do that next time. It's possible it's an allergy for me, but it just feels like it must be related to circulation since it happens after I walk or am somewhat active. I just went for a walk and it's kind of cold out, and afterwords my feet felt itchy and burny in the same way that my hands do. (I don't know if they were swollen--didn't look.) Who knows! Good luck with your mast cell tests!