NaomiSpellman

Sorry you are feeling so bad. I have fainted from both hypoglycemia and from orthostatic hypotension, and learned how to tell the difference. The former was scarey because I blacked out for what seemed like a long time (they told me it was maybe 30 seconds), and though I could hear the people around me I could not move or see. It felt like I died; I couldn't come out of it. The OI faints were quick - I came to immediately upon falling on the ground, as soon as oxygen returned to my brain. I have been able to get both under control through careful constant regulation (diet, sleep, etc). But the sensations of faint from both sources are getting stronger now as my symptoms worsen. I hope I don't start falling again. Fatigue is also worsening. Any "big" day requires a day of bed rest following. Try to limit your stress as it is a big factor. I have had success treating: lack of appetite/nausea; joint pain and inflammation (including acute abdominal pain, swelling, and inflammation from IBS); and acute anxiety with medical marijuana. I am off it now though, and I am losing 5 pounds per week. The medicine is also helpful as an analgesic - I am able to exercise much longer, pain free and without panicking from fear of fainting/falling. So sorry this is so hard to manage. I wish there were an ideal solution. Sometimes just when I feel I've reached a plateau, I suddenly slip down several rungs of the ladder.

Any experience treating Bipolar with Dysauto heart problems? Help! I have not been on meds for my Bipolar for awhile, due to major past med fails. But as I am rapid cycling and getting mixed bipolar more and more, I need to try to get help. However, I notice over and over that arrhythmias and most neuro-psycho meds DO NOT MIX! "Do not use if you have arrhythmia" or "Use extreme caution when taking this drug if you have arrhythmia". My uncle died of heart failure while having heart complications from such meds, so I am afraid to go back to them. I am wondering how much of the mental distress is related to late-life dysauto symptoms, as people here speak of mental hyperactivity, confusion, and distress as they get older. Thank you.

My mother is the only one who believes me. Other people keep asking if I am feeling better, or tell me "You don't look sick!". Many suggest my attitude is the problem, that there is no real illness. I get harassed for bringing a service dog on the bus because, obviously, someone that looks normal can't possibly be disabled. People have yelled at me for this. I left the bus sobbing today after a terrible run-in with the bus driver, who tried to drive off and leave me stranded. I was numb with disbelief afterwards.

SnowDrifter I have also been thinking about this issue. What I learned recently: 1. Migraine sufferers have reduced brain cortex layer (thinner from birth and worsening with each migraine) and migraines with aura can be spotted in MRI as faint curved white streaks in your brain 2. Bipolars have reduced grey matter overall3. Chronic viral infections cause memory loss/brain fog 4. Anti-depressants cause memory loss, as do many pharmaceuticals prescribed to neurologic patients 5. And as we know Dysautonomics have reduced oxygen in brain I have the full quintuple whammy. It is a wonder I don't hear my brain rattling around loose in my cranium at this point. Certainly these reductions in functioning brain matter would have to cause reduced brain function. Sometimes I wonder if it wouldn't be better to just be permanently STOOPID all the time. It is hard to be intermittently STOOPID each day. Makes no sense to people. I have had a 5 week phase of brain fog now - the longest I have ever had. Used to be helped through acupuncture. No more. Good luck.

I also get many tiny bumps, as well as diarrea, red flushing at joints, groin or joint pain. Additionally I get ear cystes and vertical red marks on my abdomen and low back. Do you have symptoms in rectum and vagina? I have bumps, inflammation, pain, and fluid in there during some of these cycles. Have been diagnosed several times with benign (non- std) conditions down there: avuncular vestibulitis and bernard's cystes - these may have been misdiagnosis. Sometimes cannot take a step without stopping to recover with each step. My neurologist assumed it was Shingles and I've been on anti-virals for it, which helps for a couple months before plateauing. But he never actually tested me for Shingles! Hmmmmm. And my cardio also mentioned MCA to me, and he said these particular symptoms are allergic-type histemic reactions. HE also put me on an anti-viral, and suggested in the future we try antihistimines. This is all so complicated. I think i need to earn an MD to understand all this. In my case I have no insurance and no way to get tests, so I instead am prescribed meds to see if they counter the symptoms. I can see now why the Mast Cell Diagnostic tests are prohibitively expensively.

Does Mayo do DNA test to determine how you are likely to tolerate drugs

Jonchel: Sorry you are having this problem. I also started recently having shortness of breath and the feeling I am not getting enough air. It is scary as I used to compete in sports (a long long time ago!), but recently it feels I've aged 15 years due to the breathing and chest problems. My nausea is getting worse lately, constantly swallowing as if about to vomit. I already had nausea due to chronic vertigo. I sometimes take medicine just to gain an appetite, as I don't feel like eating otherwise, and can't keep protein down very well. My cardio also told me: I may have MCA. Though I was not aware this problem precipitates the breathing difficulty. It seems like everyone with dysauto has breathing distress, often acute. It is so scarey, it sometimes feels like you are getting snuffed out. I am surprised you are able to tolerate beta blockers. I had to get off Verapamil (for migraines) in a big hurry as it made my BP tank big time. Be careful to pay attention to your BP. Thank you for sharing this.

Thank you for sharing this. Congratulations for persevering re: getting the accommodation you need and deserve. Hopefully it will work long term.

Yes exactly: I was told at age 27 "You might have POTS". But I would not believe it! I made fun of that doctor for years. And I always played sports and made art when I was still able, because I didn't feel so clumsy then. Orthohypo and Racer - Thank you for your thoughts. I appreciate your acknowledgement: that it is OK for us to use a wheel chair at work. And I can see it becomes essential eventually. When I qualify for healthcare, that will be a priority, to get a wheelchair. But for the time being getting in a wheelchair is a step too far for me, because I don’t know how to acclimate to the idea. It will take years mentally for me to accept it. Anoj - very sad to read about your experience with your employer. I can only imagine how painful this is, on top of the minute by minute struggle we have. But it is encouraging that you did succeed to work at home. I also find that is what I am capable of at this point and am working toward such a solution for myself.

When I was young I competed in track - sprint races, relays, and triple-jump. My track coach used to scream at me during conditioning after school, as I was so symptomatic during long runs and conditioning exercises I almost passed out. But I was so clueless, I just tried to keep going all the time. I see now i was lucky to be able to compete at all and I feel blessed for the experience. Now I am forced to slow down due to worsening problems with fatigue, lack of oxygen, and dizziness/vertigo. Had to stop playing going in the water and playing sports - but lots of walking every day. I do have acute OI symptoms while walking and must recline, drink fluids, eat salt, and eat food during the walk to prevent acute episodes. I can't carry anything on my back due to silent migraine/constriction problems in my upper body, so I stop and buy food and water along the way. I carry salt with me. It is harder to stop than to keep going, because your symptoms really pile up when you stop moving. The longer walks tire me out and I am pretty much useless the rest of the day. I do have to take an analgesic for any long walks due to joint pain and inflammation. Some days I get caught out with bad episodes a couple miles from home, and I don't know how i will ever make it home. My dog is essential to keep me calm during those phases. I alternate long walk days (or work days) with short walk days, so that I can recover from lasting symptoms after a long day. My Cardio prescribed weight-bearing exercise. So I went to the nearby gym for a trial work out. I was in tears by the end of the workout, as my joint weakness prevented me from holding poses, and I could not communicate well with the teacher. I reinjured my bad ankle that day and I felt sad afterwards. I had similar difficulties at yoga. I believe they think I am a holy terror and would prefer not to see me there! During yoga class I was rolling on the floor, groaning, holding my head as I developed a migraine aura with shapes as soon as they lit the incense. We were supposed to be meditating silently at the time. Frequent trips to the bathroom were also unwelcomed. I wish I had space at home to work out at home...

NOTE - there is a difference between pediatric POTS (which sometimes does go into remission in adulthood) and adult POTS. We all know the prognosis for adult POTS is NOT GOOD! They need to determine genetically BEFOREHAND whether a specific med can be tolerated and whether it will help. The constant going on and off pills, and intolerance to pills, is killing me. One prescribed med dropped my BP dangerously, one made me suicidal and i had to get off it right away with no help. As for adult POTS prognosis - all I can say is thank god I have Bipolar Disorder. Because at least it is recognized fairly as a disabling condition. I can only hope for the sake of others that our increasing knowledge of the genetic component of POTS will eventually help serve this population fairly in the future. Good luck.

Try finding something you CAN do. For example, I am totally fine writing/researching for hours as long as I am prone or sitting. You could specialize in some industry, as there are all kind of materials published for every industry (for their own employees, for trade shows, trade magazines and websites, for retails, for marketing/PR, etc). You could even get an online degree in a growing industry to increase your knowledge/vocabulary in that area. If only I had followed my own advice . . . I asked for a reclining chair at work to prevent acute OI symptoms during work. I have been working as a teacher for many years, but my condition is worse now. It looks like my department wants a Functional Limitation Letter update in order to provide such a chair. I guess I will just use a regular chair/s for the time being and see what I can rig up in the classroom. My main fear is how students will respond to seeing their teacher reclining or sitting back with foot up during lecture! LOL all around! I suspect it will become a big joke. I am thinking of ways to explain to students why it is better for me to lay down than to have acute episodes at work. Maybe I can show a video of a circulating Lava Lamp (I would be the unplugged motionless Lava Lamp)? Any ideas? I feel lucky that I was able to work for so many years without the sickness overtaking my life. I see that many here were much worse off than I was while young, and it pains me to imagine such an early disability. In my case I often had problems at work and was unable to advance in my work. While symptomatic it took too long for me to complete simple tasks. Occasional rude comments at work and few invites to social events. Every job ended too soon, without words spoken about the odd behaviors and limitations, as I did not have a diagnosis until very recently. But I have to wonder - what if I had been properly diagnosed while young, and never went to work? It would have saved me from a lot of acute distress, but I would have never had the pleasure of taking big risks and failing, or dreaming big dreams. But in such a competitive environment shame and decreased self-esteem became a chronic problem - at least until I understood the medical underpinnings for these symptoms. Still working on that one. Naomi

I see you have possible Mast Cell Abnormality; my doctor told me the acute burning sensation in my feet and lower legs - accompanied by flushing, panic, distress, redness, aching/fatigue, mental confusion, chest pain and constriction, choking sensations, numbness/immobility on right side, pain in right shoulder, limbs falling asleep, and crying - which occurs normally 5 hours after first standing up, may be due to Mast Cell Abnormality. And yes blurry vision or visual auras (big blurry spots) appear sometimes before these episodes. One time epiglottal distress preceded this type of episode (valve in throat sticking closed during meal; no oxygen, terrible fear/panic). I have not been tested for MCA yet but I would like to get tested. My cardiologist Dr. Ahern prescribed an anti-viral, Valacyclovir, to help with these acute symptoms, and it does seem to put the acute symptoms into remission. After about a week of increased symptoms, the anti-viral started to work, subduing the acute OI symptoms as well as my long-term vertigo distress. Both my Cardiologist and my Otoneurologist indicated they have patients whose symptoms are aided through anti-virals - even if they don't have a viral infection at the time. In my case my chronic Shingles are benefitting from the anti-virals. The Shingles may be part of the bigger picture i.e., neuro flare-ups. My ongoing menopause could also be playing into these acute episodes, perhaps. I am hoping I can take this anti-viral for longer than the last one - I developed a resistance after 4 months on Acyclovir. Thank you for sharing this info. It is helpful to know one is not alone, even though these attacks are terrifying. Good luck Naomi

I got a rescue terrier and even though he is completely inappropriate as a service dog, he is part of the family. He is very protective of me. He knows when I am having a bad episode and will come directly to me without looking at me, and sit right against me during these episodes. He hates crazy people and barks to ward them away. Not sure why he tolerates me! LOL. The problem is, he doesn't think he is a service dog. He seems to be convinced he is my husband! For example, if I try to converse with a strange male - NOT HAPPENING! TOO MUCH LOUD BARKING GOING ON.

I stopped having visitors completely because I get so stressed out from the extra work, and can't respond to conversations anyway while having episodes. I do offer to meet people in the morning outside the house, because I have more energy and have not yet reached my limit. I can participate in conversations in the a.m. Also I had to move into a tiny wierd apartment after I got sick and there is really no room to have anyone here. Finally, most people really are not motivated to spend time with anyone with a mental health condition, so I guess that works in my favor, since I have limited tolerance for interaction due to symptoms. Occasionally my son's friends will overrun the apartment and I am basically just panicking and trying to stay calm until they leave. I'll try to stand up and do chores then, and try to appear like a normal person should at home. I appreciate the procedure that SaraC628 follows, as it lays out the ground rules. If you manage a house, surely that is a good way to do it. I agree you should tell people in terms they can perhaps understand. After all, there is no cure. In my case my POTS got worse in my 40's and I believe this is typical. But I also understand why you are reluctant to let anyone know. People will judge you for being disabled, make negative comments about you even when you are right there, and some will insist it's all in your head. Unfortunately this can include your own family. I understand how painful this ignorance is, especially since you are trying to make a connection and lay the ground work for reasonable and sustainable interaction with people. But the judgements people make without knowing you are sick, are also ignorant and painful. In the end there are people who listen with an open mind, and there are those who insist on their own ignorance. This difference is in part genetic. So try not to judge people for insisting on ignorance. Ignorance and prejudice were the only tools we had as humans until recently, when it came to protecting ourselves against bewildering afflictions. Thankfully today we are coming to understand how genetics and environment plays into neuro psych disorders. But peoples fears and prejudices change only slowly.

I feel in some ways like I’ve split in two since becoming overwhelmed with symptoms. There is the one who stopped caring, a shell going through the motions, the one that thinks about death (this is the bipolar speaking). Then there is the one going through other motions, unfamiliar motions, connected to survival. Trying to survive with this mess. I spent 4 decades wanting to believe I was healthy and that I could do anything. Now I know better. I don’t know who I am anymore. Sometimes I wish everything would stop. Other times I find myself contemplating getting back on the train. But not the same one I got off. It is comforting to read these posts and recognize your own struggles in others' lives. I feel less alone in this endeavor. Thank you! And yes definitely little things like nail polish and caring for yourself (as if you had somewhere to go) can help raise your spirits. Naomi

I had uninterrupted rotational vertigo for 7 years. It was so bad I was constantly nauseated and terrified, and couldn't focus on much. My Otoneurologist said I might have brain damage resulting from the vertigo, because when it dissipated I was still unsteady and often "slow" or stilted physically and cognitively. Now the vertigo and dizziness are intermittent, and I have recently noticed that THE VERTIGO AND DIZZINESS IS OCCURING AT THE SAME TIME AS MY LATE MORNING OI ATTACK. This makes me wonder if the vertigo all along was due to dysautonomia. But the severe vertigo started one October after surfing - I got cold dirty water in my ears, and may have had Shingles cysts inside my ears after that trauma. Have had constant pain and pressure in my right ear ever since, and hearing/comprehension problems. Now if I swim, when I get out the water I am so sick with vertigo I have to hold on to the walls and I can't tell which way is up for about 40 minutes. The post-swimming vertigo attack lasts for about 30 hours, so I gave up all water sports. The vertigo responds positively to antivirals (but not completely). The vertigo also responds to acupuncture, but again unreliably. I've had ear problems since I was small (tinnitus, ear pressure and pain). Like Angela I had navigational problems since a young age. Had horrible travel motion sickness since birth. I used to vomit after a 10 minute car ride. It seems as if vertigo disengages you from your navigational sense. I learned, though, to pay attention to navigational signs - but ignore my "sense of direction" - which tricks me due to false sensations of movement. Like one of the other replies here, I also have terrible problems seeing/navigating at night. I lose my sense of depth, and I cannot tell how far or close things are. I can't distinguish between reflections and other lights at night, so that all of them seem to create a cacophony. I had to stop driving at night because it was so stressful to process. I do a lot of walking these days. Thank you this is so helpful. I suspected this connection for awhile now between vertigo and POTS.

I am a single mom. Does that count? I have Bipolar and possibly Pseudobulbar Affect and this makes relationships difficult, and it makes one unbearable generally. I stopped dating a long time ago. I go to bed by 6:00 p.m. and am also so fatigued that I can't imagine conducting a relationship. It is very stressful to be on your own with this curse. I often wonder if I've developed PTSD from years of stress due to getting sick again and again, having problems at work with symptoms, with no medical support to help understand what was happening inside. And yes, staying in an unhealthy situation is toxic to dysautonomia, but unavoidable if you are unattached and disabled. A healthy environment is a luxury that requires a considerable income in this country. I would not survive without help from my family. It is difficult to accept help, and there is no end to the help one needs just to get through a day with this curse. I would like to care for my aging Dad, my parents have always supported me despite my inability to capitalize on all their support (pre-diagnosis). But I am having trouble taking care of myself and wonder whether I can ever get better. I am thankful for the insights in the above posts re: onset or worsening of POTS with childbirth and with viral infection. I also experienced worsening of symptoms with these events, and after being hit in car (rear-ended).

I was told by a GP in 1990 when I was 26 that I “might have POTS”, but at the time there was little knowledge re: the adult manifestation of POTS. I had been having neurologic disorders since age 4, including surgeries, medications. But the orthostatic intolerance manifested in my twenties. I could not get medical help through my HMO - “Just salt your food and drink more coffee” this was the only help my GP offered. He laughed when I asked him to get diagnosed and treated by a specialist for this condition. I guess it was pretty funny, in retrospect, because I have never been able to get help through an HMO or through insurance. 25 years since that assessment I am happy to be getting help from a Cardiologist who has POTS patients. I did go through a very low phase before I was able to find medical help. I was depressed at lack of concern from various doctors – I was told by one ENT I had caused my vertigo/nausea problems by myself (“Q-tip trauma” is what she wrote on my Medical Record that day). I had become very sick with a range of neurologic symptoms, and stopped taking care of myself – stopped caring about myself entirely. I was actually going to work without brushing my hair or teeth, because I couldn’t stand long enough to complete all the tasks associated with getting everyone out the house each morning. I stuffed my matted hair into a clip, then under a hat which I wore all day. Everything left undone. Horrible time. I still struggle to care for my son on a day to day basis, but thank goodness he is growing up and self-sufficient. I am in a better frame of mind now that I understand why I struggled so much. I have only recently begun to forgive myself for all the difficulties I have had at work, with relationships, etc. Since having a discussion with the Cardiologist about POTS last week, I am considering anew why things happened the way they did. It is like pulling off a pair of rose-tinted glasses, and seeing the world with naked eyes for the first time. The glasses were broken anyway. I am in a daze – the same way I felt after getting hit in a car accident. I did not realize how much the symptoms were affecting me. For example the Cardiologist described why POTSies have cognitive difficulty. And it makes so much sense now. When there is no oxygen in your brain you can’t really think. Duh! But of course you cannot explain this to a normal person. I often feel frustrated at the huge chasm between my own perception, and the normal persons’ way of going through their day. Some days I feel like I am living on a different planet than the people around me. As others describe: symptoms up and down all day long, like on a seesaw, or a catapult – some symptoms are physical, some emotional, others cognitive.

Was the Bipolar diagnosis a false diagnosis (do you feel it is at this point)? I am hoping to become enlighted re: how to manage ongoing Dysautonomia symptoms along with Bipolar disorder. I have not have improvement from Magnesium. I also have family history of FM and Arthritis, and very weak joints (slipped or compressed disks; neck and back pain; joint injuries and sprains and breaks). Thank you, Naomi Spellman