Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by HoudiniCat

  1. Count me in too. Pre-POTS I would easily blush my now it is just ridiculous. Any kind of stress or change from calm and relaxed (even excitement like going to a party or laughing too hard with a friend) and I'll get hives and/or red, blotchy areas all over my face/neck/chest. It stinks.
  2. I get this from time to time as well. Could be from my shoulders on down or just in my hands. I think I remember my doc saying it was a blood volume/blood flow issue but said it wasn't uncommon in POTSIES. Actually, if I'm reading and holding the book up (or any movement that puts my arms over my head for any length of time) it usually happens to me.
  3. 1. Do you believe -or has a doctor told you - that you experience blood pooling mainly in your legs? No. 2. Have you ever been diagnosed with EDS or suspect that you may have it? Never been dx?d but some joints are extremely flexible. 3. Do you experience symptoms when lying down even after a night of sleep in your bed? Yes. 4. Have you ever been diagnosed or suspect that you have what has been called the Hyperadrenergic form of POTS? No. 5. Have you ever been informed by a doctor that you have low blood volume? Yes. 6. Do you experience stomach-related symptoms similar to what has been described as Irritable Bowel? No. 7. Do you believe you experience excessive vasoconstriction of your hands and feet after standing or when symptomatic - which MAY be demonstrated through a feeling of them being cold or without visible veins? No. 8. Did your POTS arrive suddenly? Yes, I can tell you the exact date and time. 9. Is your skin pale? White as a ghost. 10. Please the top 6 worst symptoms that you experience with POTS: dizziness Brain fog Weakness/heaviness in legs/arms Fatigue Visual disturbances
  4. Yes, I suffer with this too. I got a small hand-held massager and apply it to my neck/back of me head and this seems to help a lot of the time. It almost feels like the quivering/buzzing in my neck gets cancelled out by the vibration of the massager. If it's really bad then only laying down seems to help.
  5. Fortunately, my main POTS doc is a great guy who gave me a big hug and sent me on my way after my last visit with him in January. I?ve been doing really well for the last year or so and on my last few visits did little more than chat with him about intermittent symptoms. He said there was no reason to keep coming back for follow-ups since I was doing so well and that if there was a change, he?d be happy to see me ASAP. What a pleasure to have a doc like this. I?ve got another one who?s the complete opposite ? an appointment and tests every six weeks. The last few times I tried explaining that I?d like to cut down on the visits/tests, but he says its necessary to monitor my condition. He won?t let you leave the office without making the next appointment ? its very intimidating. Last time, I made the appointment, left and went home and cancelled and have not re-scheduled. I?m sure he won?t have a problem seeing me again if/when I make another appointment but I can sympathize with how you feel.
  6. When I first was dx?d with POTS I started noticing a pain/stiffness in my lower back. I chalked it up to spending so much time in bed and/or laying down (due to my other POTS symptoms) and not running/doing Pilates anymore. It started to get really bad and I could barely get up out of bed in the morning. At the time I was seeing a neuro who ordered an MRI to rule out MS ? when he got the results it did, in fact, rule out MS but then he tells me it confirms the arthritis in my lower back. What??? On mentioning this to another of my docs, an osteopath, he said he didn?t believe it was arthritis at all, but yet another problem/symptom of POTS ? another part of the nervous system malfunctioning. He gave me a couple of treatments and the ?arthritis? ? or whatever it was ? went away. He mentioned that while the arthritis-like problems relating to POTS were not that common, that he had seen them before.
  7. I've been in total face/neck/chest flush mode at my POTS docs office and he'll just give me a smile and say, "Wow, the adrenaline's flowing today". For what reason, who knows. Temp change, standing too long, too many carbs, etc., etc. Trying to figure out exacly the cause (when even my docs couldn't) used to drive me mad. Now I just try to deal with it the best I can (and it's gotten much better over time). Here's some interesting info on rosacea - http://www.internationalrosaceafoundation.org/symptoms.php4 Even though I don't have it, I think there's definitely a cross-over/overlap with my POTS flushing.
  8. This was one of my most bothersome symptoms when first dx?d. It felt like I was burning up from the inside out ? like my blood was molten lava and the burn radiating off my skin was like a white hot sunburn. At the time, the only relief I got was from lying down and applying cold cloths to my body. I?d also wear Cool-dana?s (from the sporting goods store ? bandanas filled with a liquid pack that you could freeze and then wear). I?ve been going to a cranial osteopath who?s been doing head/neck manipulation to lessen the severity of my POTS symptoms. Oh, on several occasions I?ve had the out-of-control cough with this. But most times, it was the out-of-control yawning. Just crazy, this illness!
  9. A vets not as bad a choice as you think. Had a long conversation about dysautonomia with my cat?s vet after overhearing her prescribe Florinef to a German Shepherd on one visit. Then went home and jumped online to scour the internet to find everything I could on POTS in canines - tyring hopefully to find some key piece of knowledge that all my docs were missing. Hours and days into my research, I thinking ? I?m either desperate or nuts! Still have the POTS ? and a nice, shiny coat now! Woof woof!
  10. My POTS doc is cardio Dr. Michael Goodkin in Media, PA (on the Physician's List here) who I cannot say enough good things about. In addition to the "regular" POTS care he provides, he has me working with a great osteopath who has helped a great deal with the management of my POTS symptoms - Dr. Lawrence Bellew, Claymont, DE.
  11. In the beginning when my symptoms were at their worst I decided to follow my docs suggestion and try Klonopin (benzo) to ?re-balance? my nervous system. It definitely took the edge off many of the POTS symptoms but left me with other side-effects of the medication. Stayed on it for awhile and then switched to Lexapro (SSRI). The side effects from that weren?t worth it for me so I stopped it after two months or so. For me, I?d say the Klonopin helped me to at least function better when my symptoms were at their worst in the beginning. Weaning off it and then finally stopping it altogether presented a whole bunch of other issues for me. But I look at it as a? necessary evil? at the time.
  12. Before I was dx?d with POTS I began keeping a list of all my symptoms as I noticed my memory wasn?t 100%. It?s almost EXACTLY THE SAME list as yours. After seeing numerous doctors who chalked it up to anxiety, I was hesitant to share the list with any more for fear of hearing the same thing. When I finally got an appointment with a POTS specialist, he took one look at it and said, ?yep, that?s POTS?. My triggers are the same as yours ? or most annoyingly ? I?ll get an episode from no trigger at all ? totally out of the blue. The randomness of POTS was one of the most difficult aspects for me to deal with in the beginning. I was sure I had something else as well. I also could get these symptoms 24/7 no matter what I was doing. No big position change (like standing up). I?d just be sitting on the couch or even laying down in bed and be experiencing many of them. Dysautonomia is a broad term that covers malfunctions of the central nervous system. POTS is one of those malfunctions. Call it what you want, I just think of it as my CNS being screwed up (for now) and I have to find the best way to manage it and live life the best I can. I?m sure you will find a wealth of information here. This site has been a life-saver for me. Type in your most bothersome symptoms on any given day into the Search feature and you?ll come back with tons of tips, information or just another person that is going thru what you?re experiencing ? it really helps. Welcome.
  13. I experienced this too and it?s a different kind of feeling than the ?brain fog? feeling. Kinda feels like I?m going about my day a little drunk and spacey. Makes no difference if I?m standing or sitting, talking to strangers or talking to my Mom, HR and BP perfectly fine or way out of whack ? it just seems to happen throughout the day with no rhyme or reason. I thought it might be tied to anxiety and researched derealization/depersonalization but for me, I think this symptom is purely ANS malfunctioning and POTS related. Sorry you all are experiencing this too but I do feel better knowing I?m not the only one.
  14. I?ve experienced this as well. For me it happened mostly in the morning too. When rolling over in bed (in my sleep or upon just waking up) my HR would jump up dramatically and it felt as though my heart would pound out of my chest. Then came a hot-flashy-type sensation throughout my body and/or crazy anxiety. My POTS doc said ?that?s what puts the ?P? in POTS? ? a change of position and your body goes crazy. Could be any one (or a combination) of the causes you mention. One starts it and then its just a chain reaction. I went thru a bunch of different med changes to try and find one to alleviate that. For me, there was no ?miracle drug?. It just slowly subsided (as most of my other symptoms did) over the course of time (years!) At the time I had to learn to sleep with one eye open and gently ease myself out of bed as to not make my heart go crazy. It wasn?t great but anything?s better than having one of those events to wake me up or to start my day with. Hope you find some relief soon.
  15. When first dx?d, I was prescribed Florinef .1 mg twice daily and after reading about the side effects was very hesitant to take it. But my POTS symptoms were out of control so I figured I?d give it a try. I took it for a little over a year ? it helped control my POTS symptoms a little (maybe saw a 35% decrease in symptoms) and had no side effects at all. As for the hot flashy feeling accompanying the tachycardia, I too experience that frequently. Mostly it?s just very annoying but I can deal with it. When it goes into overdrive though, I know it?s time to call it a day with whatever I?m doing because it usually signals a fainting episode for me. As for the normal active heart rate question, my doc said that everyone is different so it will vary but he basically said to ?keep it under 100? when up and about doing simple, everyday tasks.
  16. I used to get this all the time before I was dx'd with POTS - now it only happens off and on. Mine alternates between the icey hot sensation and a burning hot one, depending on the day, how I'm feeling, etc. Right now as I type this, its as if a large chunk of ice is on my neck and upper back - freezing and stinging. My POTS doc advised me this is definitely POTS-related - the temperature regulation issues are just one of the many in the wonderful world of nervous systems problems for his patients. Not much to do about it though. I've been going to a cranial osteopath for this and other POTS symptoms - some others here swear by chiropractic for this as well.
  17. -depending on the day either get up, get dressed, do my hair & make-up, get out of the house and DO SOMETHING ? or stay home, snuggle on the couch in my flannel pj?s, watch bad daytime tv, eat junk and DO NOTHING. -plan my dream vacation (even if I never go) ? where will I stay, what sites to see, etc. -plan my dream home (even if I never move)? what town is it in, how will I decorate it, etc. -plan how I will spend my millions when I win the lottery ? what I?ll buy, who?ll I?ll share it with and, more amusingly, who I won?t share it with -list my top 25 favorite movies of all time, favorite songs, etc. -retreat to my mini-spa (bathroom) for a nice soak with bath crystals, classical music, candles and a big, fluffy towel -try a difficult, new recipe or pop a simple quick-loaf or cookies in the oven -talk to my Dad. He passed away several years ago but it makes me feel better to talk to him and tell him how I?m doing. Knowing he?s watching over me makes me feel better.
  18. Yes, I experience this from time to time and I know many people have commented about it here in the past. Sometimes I'll be having no other symptoms but when reaching my arms over my head (like putting away groceries in a high cabinet or even drying/styling my hair) I get this sensation. My POTS doc advised this complaint is not unusual. It's listed over in the 'What to Avoid' section here as well.
  19. Yes, after a little more than two years, my symptoms are finally subsiding to where I can get through most of the day without feeling sick/thinking about POTS. The burning skin was one of my worst symptoms in the beginning so I?m most glad to see that one go. Not sure what has worked most ? meds, vitamins, salt/water loading, cranial osteopathy ? I feel like those have helped but that only time is really helping. When my POTS doc first met me he said that I will likely ?outgrow? the illness in a few years ? as most people do. I thought that odd as I was in my mid-40s. Now, two years later, it sure seems like he was right. Hope you get some relief soon.
  20. I used to get this all the time ? the burning skin sensation that feels like you?ve got the worst sunburn in the world. Mine stayed mostly on my face, neck, chest and back and occasionally on my legs. During these flare-ups the feeling of clothing on my skin ranged from uncomfortable to unbearable. At the worst times, I had to lie down with cool cloths over my body. At times I also had the cold hands/feet so it was quite a balancing act to get even a little relief. Nothing to do but lie there and try to sleep.
  21. Yes, those were my exact symptoms. They were bearable while on Lexapro but when I stopped it, they came back with a vengeance. I also had SSRI discontinuation sydrome from stopping too abruptly so that made it even worse. I toughed it out for 3 horrible months and slowly but surely my body seemed to adjust so that now I rarely, if ever, have those symptoms any more.
  22. The day I got POTS was the day I got full-blown, over-the-top, crazy anxiety. The social anxiety was horrible and I feared I would never leave my house as that was the only place the anxiety was tolerable. All I can say is, for me, speaking to a therapist helped ? and then tried some meds ? and slowly put myself into those situations to recondition myself to them has helped. And I totally agree with the other posts about preparing yourself. The more you prepare yourself for the situation and go thru it successfully, the easier it will be next time. I know that sounds easier said than done but for me, it works. It's bad enough to have all these physical symptoms with POTS but then when you start experiencing the mental and emotional ones, it just not fair!
  23. I used to get these same symptoms frequently when first dx?d with POTS two years ago. They were all day, every day and I was barely able to get out of bed for 3 months. Now, thankfully, they have significantly subsided. I had almost every test mentioned in the previous posts and they turned up nothing. I was on Toprol and Florinef - slight relief but not much. Then added Klonopin ? hard to say how much better the symptoms were because I was zonked out on my mind half the time ? but it got me thru the day so I continued taking them. When a bad spell hit, sometimes the sitting knee to chest and increasing salt/fluids combo worked. Other times, it was into bed with cool cloths over my burning face, neck and chest to sleep it off for hours or days. My POTS doc then referred me to a cranial osteopath as he?d had much success with the additional treatment he offered. Without me saying anything, after the initial exam, the osteopath starts rattling off the long list of strange symptoms I?m having. He mentions that my hypothalamus and numerous nerves and vessels in my head and neck are compressed and how this could cause these symptoms. Very interesting. After a dozen or more treatments, I?m much better. Still see the POTS doc as well. Not sure what has helped most ? the meds, lifestyle change, osteopathic treatments, or just time ? but just thought I?d share.
  24. I never had anxiety/depression/SAD but have for the last two years since being dx?d with POTS - so I think there?s something to this theory. Used to love to ski/snowmobile and couldn?t wait for daylight savings time to end so it would get dark early and I could cuddle up with a book, etc. Now I?m dreading this time of year ? strictly because of these emotional symptoms. Otherwise, I?ve got many fewer physical symptoms than in the heat of summer.
  25. I?d NEVER go anymore ? too many bad experiences and absolutely no help. My POTS doc advised me not to go anymore either ? said us Potsies are ?far beyond the scope of emergency room medicine?. If it?s really bad, I call him (he?s 2 hours away from me, so a little scary) and we figure out a way to deal with whatevers happening.
  • Create New...