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Everything posted by masumeh

  1. I think there is a "trigger" for most symptoms, though the matrix of factors is so complex it's difficult to decipher what is really causing any particular problem. For example, I could walk a long distance, but would get fatigued if a short activity involved raising my arms over my head. Something exciting is exhausting by default, so that was another trigger. My monthly mentral cycle, my quality of sleep, my stress level, and even the weather can influence my POTS symptoms. So it's just a big juggling act, and very difficult to pin down a solid "understanding" with operational application (like I can get control over all the factors in order to control, or at least predict, my symptoms). It took me many years to gradually realize all the coping mechanisms that worked and all the triggers that caused symptoms. I'd like to add, however, that this experience has taught me an important life lesson, which I may otherwise not have realized, namely to be thankful for temporary joys while they are there. Essentially, nothing lasts anyway. So, I believe that was an important lesson that fluctuations in my symptoms helped me to see and really practice.
  2. Midodrine gave me a "wired" feeling, as ramakentesh also described. It also seemed to end in a "crash", but I tried to avoid that by taking the next dose before the last one wore off. Spreading doses out in smaller mgs helped, for example 5xs5mg rather than 3x10mg. I worked with my POTS doctor who prescribed the medication to adjust doses and try to get around the side effects I experienced while on the pills. There were numerous side effects, which seemed to change and evolve over the 2.5 years I took midodrine. In the end, I couldn't tolerate the medicine at any dosage and stopped. But the benefits were really amazing, as they seemed to have perminantly healed my vascular laxity, as my doctor described "retrained" my viens to constrict properly. I should also mention that I felt benefits from the first pill. After 10 minutes, I was able --for the first time in about 5 years-- to lean over and pick something up without blacking out when I straighted out again! So we struggled, my doctor and I together, through the side-effects management because the benefits were worth it. I think you really need to talk to your prescribing doctor about any side-effects that may be bothering you and weigh it against the benefits you are experiencing. We're all different, and reactions to these medications are really different from patient to patient. Good luck finding a treatment that works for you!
  3. Congrats! There were several previous posts, years old, on pregnancy and POTS experiences. As I recall, it affects people differently; some improve greatly while others are devistated and everything in between. I am also pregnant at the moment, not far ahead of you (nearing month 5). It's my third pregnancy and hopefully second child. My daughter is now 8 years old. We knew that pregnancy would probably hit me hard, and since I had recovered from POTS, with only a few episodes of fainting a year compared to several a day years ago, we were not eager to test those waters. But it's happened, and my POTS was terrible during first trimester. Very depressing to relapse, but I just keep thinking: FIGHT IT! Tryin to stay positive and take it one day at a time. Thankfully, second trimester is MUCH better. I've been struggling to stay conditioned, and thankfully dizziness is subsiding. Blood pressure naturally drops, and heart rate increase is normal during pregnancy, so this makes it hard to tell how much is POTS, especially with some other medications for hyperemesis that I'm taking which create side effects of difficulty breathing, fainting, and seizures. I think for me, POTS exacerbates my nausea and fatigue. I just handle it by sleeping as much as I need to, putting myself first and letting someone step in with my domestic duties. When I get a little chance, energy-wise, I walk as much as I can, even just around the house, to stay conditioned. Staying hydrated is really, really important for both the pregnancy and battling POTS, so you might want to keep pushing electrolyte-high fluids. I also prepared myself for any possible complications by getting a high-risk OB/GYN, who insisted we create a team with a POTS-savy cardiologist and a hemotologist (hemotologist because I have liver function problems, not necessarily related to POTS but started at the same time). I give extra effort to avoiding triggers, and am careful to take my time standing up in phases, if I've been laying down a while. My OB/GYN in my second pregnancy warned me to "try to fall backwards" when I faint, if at all possible (not to fall on the baby). Falls are a miscarriage risk for any pregnant woman. My current OB/GYN recommended baby aspirin (in addition to my heavy-duty blood thinner, heparin shots) to improve blood flow to the baby. She stressed folic acid (at least 350mg/day) to counteract the heparin. That has to do with my thrombophelia more than POTS, I believe. But it's hard to tell if the one does or doesn't stem from the other. I think generally having a "ready for anything" attitude is good, but try also to relax and enjoy your experience like other women. Stressing isn't a good idea. I try my best to be prepared but then forget that I have this problem and just enjoy my life. It's less stress for me that way, and I think that's best on my health anyhow. Good luck!
  4. I don't know much about POTS in a small child. I got it later, in my late teens/early twenties. But I am a teacher, so maybe I can give you some teaching tips that could apply to any child. At age 4, learning should be fun. It should involve games, all games. Even a worksheet for a 4 year old should look exciting to them and have a point, like finding something or coloring in something, to motivate them. If they aren't interested, then find something else which does interest them. Let them take the lead, and your job will be much easier and more effective. Where is your daughter at with letter recognition, patterns, logic, story comprehension, and number recognition? There are tons and tons of games you can introduce for all these things...computer games, crafts, board games, etc. I like "Jump Start KG" a lot for early childhood. It's really engaging and very effective. You can also do crafts and hands-on things. Make pancakes out of letters and eat them together, point things out about nature when you are outside together, read to your child when they are tired enough to sit for a few minutes.. My daughter starting reading at 3 1/2, and she was learning letters, etc. by age two, and she is now 7 and reads fluently in two languages and is learning a third language. I can tell you that she led the way with almost everything about her learning process, but I had to provide the games that could enrich her play. Computer games were really useful, and she started on them at age late 2/ early 3. We got her a tiny mouse because of her tiny hands, and otherwise she had no problems navigating the games. She loves learning, and she pushes me to teach her more and more about science, languages, literature, and math. She thinks it's all fun because it was never a chore, it was always bonding time between me and her, and it was always her interest that spurred the next step. I've taught all ages, from KG to 50 year olds. I've taught in classrooms, homes, prisons, and mental hospitals. The number one tip is to use responsive teaching methods. Know your student's motivations for learning and what engages them. For some students, it's working toward a goal. For others, it's the relationship with you, the teacher, or with other students. For some, it's competition. For others, recognition and reward. For a student with ADHD, you need to give plenty of breaks to jump around, and make lessons short. Repetition will take on a different meaning for you, working with ADHD students because you need to connect dots of past, present, future with them more for them at the beginning and teach them how to make those connections themselves. Equip them with concentration techniques, and make sure the environment is not distracting (not noisy, decorated, etc.). But how does your child have and HD component with chronic fatigue??? I would be really careful about this label with a 4 year old. Good luck!
  5. There are phenomenon called pseudoseizures in people who do really suffer from epilepsy. I'm sure it's possible for POTS patients who do really suffer from syncope to have pseudosyncopal episodes as well. That means yes, you can induce a fainting episode mentally/emotionally. Pseudoseizures usually happen in front of people, and it is generally interpreted as an attention-seeking behavior, with much debate as to whether or not the patient is conscious of their motives or even conscious that it is not a real seizure. Under what circumstances are you mentally inducing your fainting? Do you know why you do it? Is it only when others are around who might sympathize with your symptoms only when they are severe or take that form? It is also known that some people can mentally stop real seizures, although this is potentially very different from fainting because fainting essentially is caused in the cardiovascular system while seizures are coming from the neurological system. But patients who have succeeded in this feat usually say they tell themselves a word, mentally not aloud, and that word is usually one word: STOP or NO. I believe a person with POTS would have difficulty controlling a faint via top-down processing (using thoughts to command body functions) because of the damage between brain and organs (the dysautonomia itself). But I suppose it's possible, especially if the person has gotten to know himself or herself and can manipulate their organ function (e.g. respiratory rate, heart rate) by inducing the appropriate emotion and its associated hormonal and internal organ response. You can also use biofeedback to acheive this, or you could at least try and see if it works for you. There is an incredible relationship between your mind and your body, and it's not very well understood in science. One thing we know is that top-down and bottom-up processing both influence experiences, thoughts, behaviors, and physical and mental health. That means your body influences your mind and your mind influences your body. And of course you're not crazy. Nobody here is crazy. We're all coping with stress, and that might produce behaviors that we don't really want to embrace in the long term, but that doesn't mean there's anything abnormal about such a reaction. Even if you are experiencing pseudoepisodes, there is a real reason for the fake symptom and that reason might be lack of affection and concern shown by those around you or lack of understanding and you are trying to make them understand. Or perhaps you are trying to figure out what is causing this problem, and you are experimenting with causation by trying to induce it. In any case, you seem perfectly sane to me.
  6. hi, I'm also concerned about overlap between POTS and epilepsy or other seizure disorders. It's an unanswered question for me. But I have been investigating this issue for some years now, and I have seen very good specialists in neurology and cardiology. My EEGs are normal, but my syncopal attacks appear very much like seizures with prodromal symptoms and aftermath effects such as insomnia. I get pain in very specific parts of my head, my hand quivers/convulses, my breathing becomes shallow, my eyes roll back, it hits me any time and posture, triggers include classic seizure triggers such as sugar intake, lack of sleep, and exposure to lights and sounds (screen time included). So all of this indicates seizures regardless of EEG results. At the same time, I have swings in blood pressure and heart rate (very high, very low), GI tract problems, constant nausea, liver probems, and other issues that cannot be epilepsy and are classically related to POTS. So did the same damage that caused my seizures also cause my POTS? Did my POTS cause my seizures? Are seizures a possible but not universal feature of POTS? I don't know the answers to these questions. But for treatment, I've found over the year (9 years!) that I need to address POTS in one way and seizure prevention in a different way. If I ignore either, then my health will go down. For POTS, I need to do conditioning (cardiovascular and skeletal muscle with focus on leg muscles involved in venus return), exercise my lungs and control my respiratory rate to be very low, avoid "down time" or laying down time even if or especially if sick with something else, stay hydrated and increase salt intake, regulate my own heat environmentally because my body can't, watch my diet in terms of avoiding milk and difficult to metabolize foods and increasing antioxidants, and try to avoid stress including anger and excitement. All of this has had a learning process and many failures along the way to developing correct and effective coping mechanisms for my individual symptoms. But it's all pretty much unconscious now, like just the way I live and I don't have to think about it. For the seizures, I need to stay away from sugar, get enough sleep at night, be careful and aware of insomnia related to hormonal changes around my menses, avoid lights and loud sounds (especially flashing lights or complex sounds), and stay away from caffiene products. I also "fall proof" my house (carpets everywhere and not a lot of sharp edges) and I don't risk my life or others when I have the beginning of a headache (i.e. I don't take a bath, drive a car, etc.). I wish you a quick road to recovery and effective management. My biggest advice is to just do what works for you and don't worry too much about what doctors call it. Where this gets difficult it in deciding about medications. I took POTS meds, tried everything and tolerated nothing in the end but was helped greatly by Midodrine for a couple years. I never took AEDs (anti-epileptic drugs) because my POTS doctor and many other specialists and doctors told me that AEDs are dangerous and even if you DO have epilepsy, they are most likely to make you sicker rather than healthier. good luck!
  7. in the US, I saw a specialist listed on DINET, who is a cardiologist, to assess for POTS. I don't have medical insurance. Every visit cost $350, and the diagnosis requires a series of about four visits. Every year, I follow up twice, costing me $350 each time. The doctor conducts ECG, stress test, tilt table test there in his office, and those tests are all included in the flat $350 fee, whether I do any of the above tests plus consultation or consultation alone. I also traveled to another state to see an autonomic specialist/researcher neurologist at a university hospital. Again, no insurance. That trip cost me about $2,000, about $1,200 of which was the doctor/hospital fee. They did no imagery or electronic testing, only blood pressure and grip testing. It would have cost me up to $8,000, if I had not already done my EEG with video test and had mailed him the CD in advance of the appointment. My EEG w/video was conducted in the Middle East for $500. All these number are USD. So I spent several thousand in all. But honestly, it was worth every penny and more. With the advice, treatment, and guidance I received, I was abe to go to work....which I wasn't well enough to do before. So even monetarily, I got my money back in a single year. Of course, even if I didn't work, it would have been worth it because I FEEL so much better. Good luck finding someone in Britain. I would recommend asking all the questions you need to over the phone. They should be able to give you rates for every test, consultation, etc. if you get the right person on the phone with you.
  8. everybody's giving you great advice. i'll add my two cents... I went to college healthy and fell severely ill with POTS during my Junior year. It totally changed the way I studied, and for me that meant switching from a traditional delivery format to distance learning courses. As I recovered, I took more classes per semester. My top four college with POTS tips are: #1-- NEVER give up...just keep going, even if your pace is slow, the tunnel does end eventually. #2-- Be careful when switching activities. So for example, getting up after sitting at a desk reading for a long time takes a longer, slower transition to avoid fainting than standing up after laying down. #3-- Mature quickly....don't stress out over small details, and keep your calm because anxiety will kill your energy and concentration ability. #4-- Take care of your health as much as possible. Most college kids push their bodies and don't take care of basics like sleep and nutrition. As a POTS patient, we can't afford to do that because we lack reserve. Stay hydrated and sleep as much as your body needs. Exercise your legs, and cope with stress in healthy ways. Good luck with your new semester!!
  9. I have probably suffered insomnia on and off throughout my life, even as a child. There are three main types, categorized according to delayed onset, restless or poor sleep quality, or waking up too early. I have always had problems falling asleep, which is the most well known version. My father can't stay asleep, so maybe it's in the family. I've tried everything....no work in the bedroom, camomile tea, hot milk, warm bath, forgetting the day, writing journal, no TV or computer for couple hours before sleep, no caffiene, no sugar, reading a boring book, etc. Everything works a little, but not enough. Best thing some days is Tylenol or Valerium root pulls. Sleep is important for overall health...so it's worth trying solutions until you find something that works for you.
  10. Big challenges on your plate. Good luck coping. I know you're doing your best! One idea for keeping active is for both your son and husband to keep their legs as conditioned as possible. Exercising while sitting down is a good way to get around the exercise intolerance for some ppl. I use stationary biking, followed by long period of stretching time because the acid build up in muscles is a trigger for autonomic reaction and that can be prevented by breaking up the acid by stretchin muscles out immediately after or even in intervals durin exercise. If I exercise for 10 minutes, I stretch for 20. If you child has fatigue, there are plenty of sit-down, quiet activities that are stimulating and fun. Puzzles, drawing and painting, reading picture books, building blocks, clay, magnets, puppets, marble games, card games like memory, dolls and stuffed animals, looking at leaves and stuff under magnifying glass, rock collecting, learning to button and tie shoe laces on dolls, tracing to prepare fingers for writing...workbooks are great for activities and stickers are good motivators. Lots of 4-year-olds love to cook and bake, and they like to help out with laundry and "big people" jobs around the house. I would say probably a POTS patient should try to stay away from TV...the lights aren't good for the headaches and so forth. Playmates who have quiet temperaments would really help too.
  11. Dress in breathable, loose, cotton clothing. Know what hours of the day are hottest and stay indoors then. Carry cold things if inconspicuous, like a cold water bottle. Dampen areas of your body where viens show (bc that's the way your body's cooling itself). Go out with wet hair. Make time to rest after heat exposure. (nap time/ siesta) that's all I got. I'm gonna look into buying a cooling vest, since many of you said it does actually work. I live in the desert of Saudi Arabia, we're talking 130's. The heat gives headache, muscle ache, nausea, and shortness of breath to even healthy people, and small children and elderly are absolutely not taken out midday. I know some people here who don't take their children out of doors until they are at least toddling age. But I think that, even though I have heat intolerance, since moving here 5 years ago my body did adjust a lot. Now, when I go back to the US, I go heat-seeking because I feel freezing cold all the time...drives my parents nuts bc they have to change the house thermostat for me.
  12. Since he doesn't currently have a psychiatrist, you can also turn to his primary care physician (or establish one). This might even be easier because you can give him a false reason to go in, like a dermatological thing you've noticed on his back (where he can't see it too well). Then inform the physician that he's manic and that you and your family are in need of some help. Intervention during a manic phase requires far more medication than maintenance phases, like exponentially higher doses, so it's really important to address it with a doctor or any professional who can prescribe and whom he might trust enough to take the meds. If he isn't dangerous to himself or others, it's difficult to do anything by force, so he needs to trust that the meds will make him feel better rather than worse...hard to do. ***** that you have to wait until he's a physical threat to prevent. If he makes a suicidal statement, you can contact police and they must --by law-- hospitalize him for 72 hours in a psychiatric ward. This might be an option if you see things spiralling. As you probably know, the paranoia during mania is the really dangerous factor in terms of you and your children's safety...because in a paranoid delusional state, you become the enemy. But the depression is the part that's dangerous to him, the phase where he is most likely to attempt suicide. The nurse-therapist you mentioned is a good avenue to try. It's common for bipolars to take multiple psychotropic medications--lithium-based, anti-depressants, anti-psychotics--in combination. If he has high anxiety, he probably needs a sedative now, which is really common during a manic phase. The sedative is often necessary to get them to start taking their other meds again, because it makes them more compliant. Unfortunately, they often need to feel totally in crisis to accept this, and they are often extremely wary of someone telling them they are manic and need meds. Does he have close friends or siblings who can help you out with this? You're right to avoid direct confrontation. And you should never confront alone, if you ever feel the need. If you need to, confront with someone like his family present, do it together, and use a "call" (to doctors/police) as leverage to get him to help himself by going willingly to the hospital. You may also try using a threat to leave him to pressure him to go to a doctor. Even though he might be threatening divorce, he probably wants to be the one in control of the decision and would react to divorce threats. In any case, he needs to go to a doctor if he's manic and paranoid, etc...returning to the normal dosage of regular meds is not enough. One thing that helped me understand bipolars and why they do things like abuse substances, leave their proper meds, spend money in sprees, and go on sexual benders, is that besides having a foggy cognitive process that leads to bad decisions, their "normalcy" is soooo high, and feeling real normalcy just doesn't feel normal to them. Talking therapies can help them sort this kind of thing out...help them realize that life can be exciting without the mania, and healthy too. From what you're saying, he's not getting the right combination of drugs or the right medical support from an ongoing theraputic relationship. There's a lot you can do as a family to manage his bipolar disorder better, and that will ease much of the hardship for you and decrease stress on the marriage. I wish you luck in mobilizing and utilizing support resources. Glad your getting the fluids... Take care, Masumeh
  13. it may sound dumb, but you said you took your kids out to eat? did you eat something with a lot of sugar? I get bad reactions to sugar, and I've also had bad reactions to overeating where it feels like all the blood goes to my stomach...just ideas.
  14. Emotional stress is even worse than physical stress sometimes, especially because it's not easily controlled and it can go on and on. It disturbs sleeping, eating, thinking, and just about everything you do. So it's really important to have a support circle--friends and family--and an outlet where you can function and get past the stressor. Having a bipolar spouse can be very, very draining. Their manic episodes often involve infidelity, financial ruin, and other marital stressors. Sounds like your husband is not taking his meds or perhaps his meds aren't working for him. I've had three severely disturbed bipolar people in my life, and each of them really put their family through a lot of ****. Suicide attempts, paranoia, physical attacks, neglect and abandonment, drugs--tomorrow could bring anything, though not all bipolars are like this. They get sick of their meds, due to side-effects such as flat effect and not "feeling alive", and end up manic again, and then you have to pick up all the pieces from everything they crush on their "feeling" spree. They are difficult to keep up with when manic, and they can go days without sleep in a sort of speed-type hyper phase. So I don't know what your husband's specific presentation is, but I am sure you are coping with a huge plate of relationship issues living with a bipolar husband. Make sure you keep your perspective clear, that it's his disease at work, and it's not how he really feels about you, and it's not your fault. I know they can say some pretty hurtful things when manic...it's just like somebody else talking. Do you have power of attorney? You probably should, so he doesn't sell your house out from under you or some other manic-classic move. Custody over your children would easily fall on you, since you're both the mother and the sane one. Many bipolar mothers are deemed unfit due to their mental instability (I know two cases personally). You need to have a support system though, it's not all about how stable you are as an individual. Your family and friends are important for you and to the courts as well. I would guess that you're not headed for divorce, however, unless you want it. Hopefully, this manic phase will blow over. You can't take anything he says or does seriously if he's manic. It's just like taking the news from Bugs Bunny or something...he's not in the real world if he's manic, even if he's lucid and seems totally intelligent and coherent. I hope you are seeing a counselor about this. You can't really get through a marriage with a bipolar person without a good counselor. He should obviously be seeing a psychiatrist regularly, or at least a family doctor who is well-versed in his psychiatric history to follow-up prescriptions. The disease can be managed, and so can the relationship, but only with empowerment of knowledge and the right family, friend, and professional support. You can't do it alone and it's too much if that's what you're trying to do. Have you called his doctor or therapist about this?
  15. Hi, Sorry to be lazy and not thoroughly read all the replies here...but my little comment... I have POTS and not Addison's Disease. When I was tested for Addison's (before being dxed with POTS), my initial cortisol levels were very low; however, my adrenal function test (the stim test somebody mentioned) showed a high rise in cortisol after the ACT injection. It was higher than average in the end. The baseline during that day's test was normal. My doctor at that time ruled out Addison's based on the adrenal reaction to the stimulation, and a later endocronologist also told me that my history of pregnancies ruled out other forms of hormone dysfunction. I later felt that my lows and highs fit POTS, just another "dysregulatory" organ function thing. I had the same type of inexplicable highs and lows with liver enzyme levels and it just all seems to be too much or too little and never quite "normal" or able to react within a normal zone. Funny thing is that all the doctors dismissed those tests because they couldn't see a pattern that fit any disease they knew of...because they didn't know much about dysautonomia I suppose.
  16. Hi, Sorry that your daughter is going through all this. It's hard on a parent to see their child unwell. Hard on a teen to be less than perfect...though all people are. Okay, so I think the joint thing should be looked into for EDS, and hypermobile joints is a sign of EDS as well as a correlate to POTS (and so many other things). It is a genetic trait, whether it's actually EDS or simply hypermobile joints. Also linked to anxiety problems. Other than that, I will say that you can't "wake up" a fainted person. (Believe me, my mother tried EVERYTHING.) They can't hear you, and their body will revive itself whenever the blood supply is sufficient. I used to faint frequently, and it's preceded and followed by true disorientation. Although specialists have reassured me that my fainting episodes are not technically siezures, I've found siezure-prevention and siezure-safety tips to be very effective. No sugar, plenty of lipids from olive oil, butter, mayonaise. Plenty of antioxidants, water, sleep, and exercise. Carpeting everywhere. Injuries from faints are the problem; the fainting itself doesn't actually hurt the person in any way. Special measures around the kitchen...take out the coffee tables. Siezures cause insomnia for up to a month after. And I found that--despite all reassurances from medical professionals that POTS episodes aren't siezures--this holds true for me too. Some medications can induce POTS...but also simply growth spurts, whiplash accidents, and genetic predispositions. Some of this kind of dizziness can be due to pulmonary hypertension (which you mentioned was borderline for you daughter), and that is the most common cause of syncope in young women. In that case, it's unrelated to POTS. "Irregular heart rate" is different from fast heart rate, or tachycardia. Irregular heart rate is potentially dangerous and her cardiologist would have been worried. So maybe you meant tachy, which typically precedes fainting and siezures regardless of the cause of the faint or siezure. Sometimes sudden weight loss can cause some of these symptoms. Many of us get this neuro damage as a result of mono infections. It takes several years to get past it in that case. Spontaneous recovery is possible. Some teens simply grow out of the phase. It took me 8 years and several treatment approaches to recover, but I'm now basically back to my old, pre-POTS self....a decade older and wiser. I would say try to get expert help, but try also to maintain as much normalcy as you can. Stress provokes symptoms. Also, be prepared for a long and patient journey with ups and downs...keep living your life and support her living her life during the illness as much as possible...like don't lose time waiting for perfect health to return. Give yourself lots of breaks from it too, if you can...because it's usually several years before the person recovers, if recovery is the prognosis. I wish your daughter a speedy recovery and all the life accomplishments and dreams come true that she wishes...and it can happen, even if she has POTS. She'll just have to be that much stronger to get there. I'm sure you're giving her the best support, and it's great that you have already found out about POTS and located specialists who can help you.
  17. Synesthesia is soo cool! It's interesting to discourse with people who actually have it. We studied it as a phenomena in sense and perception class (psychology). It's not a disease, it's a different type of wiring in the brain. Your senses are linked, whereas most people's are separated. It's such a different and interesting way of experiencing the world. Very cool, very. Artists who've tried to protray their synesthetic experience give us a different outlook and a great insight into another way of feeling about things--literally. I think it's interesting that you've gone so far in life without realizing that it's different from the norm. I know that happens with some other types of sensory abnormalities, like color blindness, many people just think everybody sees that way. If there is a link to POTS I would be really surprised. But there's nothing really to prove or disprove that I guess. It would be an interesting research question for some med student.
  18. Persephone, always good to see you in the forum Yes, I noticed a link between migraines and my fainting episodes. Usually a migraine would hit just before an episode, in conjunction really. Several doctors told me that this is a neurological link between the two events, and that if I can prevent the migraine I may be able to prevent the entire chain of events including the fainting. I have taken that advice and it seems to work. Avoiding sugar, caffiene, stress, lights, and loud noise has been great for my head and my overall condition. Btw, did you read about cluster headaches? It's a type of headache that lasts about 1/2 hour, feels like intense stabbing or drilling into your head just behind an eye, and is due to the position of the reaction near a major nerve to the eye. It is one of the most horrible pains, the worst type of headache in terms of pain intensity (though it's brief), and it's sometimes seasonal. I got them for a couple years in the spring season. It was really REALLY painful. One of the two times in my life I passed out from pure unadulterated pain. Some people actually bang their heads against walls when it strikes. Very sudden, very brief, but every minute feels like eternity. There's no cure or medication that works fast enough. Normal migrane can also be very painful and nauseating too. Good luck solving this!
  19. Would you be so kind as to elaborate on "other forms of treatment"? Well, I wrote a full description some place on this message board. But briefly: 1--NO medication 2--high antioxidant diet (no diary, almost no sugar, low carb) 3--avoidance of migrane triggers (caffiene, sugar, noise, bright lights) 4--low stress 5--lower respiratory rate as much as possible (resting and active) * this was very important 6--phsyiotherapy focusing on strengthening leg muscles and building cardiovascular fitness (started with 10 minutes daily on stationary eliptical bike, worked up to 20 minutes daily, then started outdoor activities). * this was also essential Lots of stretching with the physiotherapy...stretching is important to preventing autonomic reactions. I couldn't have exercised the next day if I didn't stretch the day before. I had a couple relapses around menses and flu periods, but very brief and not fully flare-ups. I got the flu again last week and didn't have any faints from it so far. I was able to got back to work. Technically, I still have tachycardia and bp fluctuation, supposedly telltale signs of POTS, but I have normal energy and cognitive function.
  20. prognosis of full recovery is usually related to etiology, how exactly you developed POTS. some people get POTS from underlying neuropathy which progresses or cannot be corrected due to trauma or genetic factors...so their prognosis is not hopeful. but many people acquire POTS after infection or during a growth period, and they have a high likelihood of recovering spontaneously (i.e. without medical intervention). if the etiology is neurological damage limited to the Autonomic Nervous System, where the source of the damage can be halted, then those are peripheral nerves, which (unlike central nervous damage) can heal and do heal over about a 4 year period. in my case, I recovered a lot in that 4-year period, but I was still only semi-functional after that, until I got the proper medical intervention. I got POTS suddenly in 2002. I recovered a lot between 2003-2006. In 2006 I was diagnosed and started medication (mostly Midodrine). In 2008, I stopped the midodrine and started other forms of treatment. Now, 2010, I consider myself fully recovered. I'm on gaurd, however, because I know a relapse is still possible. Good luck with your recovery! I'm sure it'll get better.
  21. I agree that you should check your blood pressure in addition to your heart rate. Also check your respiratory rate and see if breathing into your hands helps slow your rr. It was a good idea that somebody mentioned, to see if your blood is pooling because you're sitting up...but I do think your HR would react to that. If it's related to the computer, you may be overstimulating with the lights from the screen. But a lot of what you mentioned is breathing, chest, and light headed type dizziness that can mean your repiratory rate is too high. Wierd symptoms are like so POTS. I used to get the oddest symptoms, I was afraid to tell people because I thought they would put me in a psyc ward. But I used to see things, hear wierd sounds, and if I closed one eye, I saw in red. If I closed the other eye, I saw in green. It was all from the POTS. "seeing things"=visual disturbances due to blood flow issues to the eyes and head in general. "hearing things"=turned out to be my blood in my ears. red-green vision=happens during extreme hypotension. But yeah, doctors looked at me like I was totally nuts for a long time. You said you feel pushed to the side? Did I understand that right? Did you check out your vestibular senses?
  22. Oh yeah, and you're NOT gonna get dumber and dumber. I had severe symptoms the first year (many years ago), and could not even finish a sentence due to cognitive problems. But later, after recovering somewhat, I went back to college and finished my bachelors. After recovering a bit more, I went for my masters, and now I work as a college instructor. But I had to be really patient with the first stage of the illness, where my body and mind were deteriorating, and everything seemed hopeless. I just fought through it, and there is something worth fighting for at the end of the story. The fight itself is worth fighting for, if you know what I mean. It's better than laying down and taking it. So don't give up, as I said, you've got a lot of potential and great days ahead, I'm sure. You'll find many people in this forum who are really successful despite having POTS. It's not a fatal diagnosis, and it doesn't mean your life is over. There's a broad spectrum of severity and so forth. Some people really have a lot to deal with, some forever, others are mild, some recover completely. It's just a really variable illness. btw, did you have a mono infection when your symptoms started? That was my POTS etiology, although it's really difficult to say the cause for certain. Some people have wiplash accidents that bend their nerves out, others have genetic predisposing factors like EDS or congenital deformations, etc. In any case, sounds like you're with the right doctors, and hopefully they can answer a lot of your questions. I always found this forum to be a really supportive and informative resource. Look through the old posts, articles, etc. You'll find a lot of material to think over and help you.
  23. It's really difficult to suffer from chronic illness as a teenager, when you've got so many development issues revolving around you, a lot of social pressure, etc. It's not an easy age, even without medical problems. Hang in there! Even time changes things. I've heard that many adolescents with POTS develop it as a result of growth imbalances stretching their nerves. So once they stablize at their full growth potential height-wise, they start to recover (spontaneously, i.e. without medicine etc.). There are a bunch of little coping mechanisms you could try in the mean time, and medication and other treatment approaches. Vitamins like antioxidents (vitamin A) help....so pay attention to your nutricion (blueberries, mushrooms, egg whites, cranberries and other antioxidant rich foods helped me recover). Little coping mechanisms include things like crossing your legs (maybe not ideal for a boy), leaning against a wall (instead of standing), breathing into your hands (cupped over your mouth to re-inhale CO2, to slow respiratory rate), and using memory aids (like repeating important information several times in your head). There are so many other little tricks to keep your HR under control, like avoid putting your arms over your head, taking stairs, or standing still (better to walk slowly than to stand still). You should really be careful what type of psychotropic medication you take, because many medications can actually induce POTS or POTS-like symptoms. Since you said you're suffering from OCD, you might have taken a medication that induced your POTS. Stay away from caffiene and other stimulants that could raise your HR and BP. And try to keep your legs in shape, because that will aid venus return (and thereby bloodflow to your brain). Relaxation and low-adrenalin, low-anxiety setting is good too. Be careful about your body temperature...if you notice regulation issues, try to keep yourself in a moderate temperature and don't overheat with exercise in the sun, etc. You do sound kinda depressed, and what you said about not wanting to live, and just living because you are too sedated to do anything about it is really alarming. You need to tell someone close to you in your support system about these feelings and thoughts. You're really young and have so much potential. Don't give up on you. I'm sure you're gonna find your way through it all. Good luck!
  24. a diaphragm spasm is a hiccup. sounds like you are describing esophogeal spasms. there's excellent medication available for that. they can feel like a heart attack because they actually cause cardiac pain. ask your doctor or phrmacist for a prescription for anti-spasm for esophogus.
  25. I was very nervous about going to see a specialist in Iowa last summer. I just wasn't sure it would be worth it, if I paid thousands of dollars just to know a little bit more about my disorder. I almost canceled the trip because I was downhearted about it, thinking I'd spend more money and get nowhere--AGAIN. But I went anyway, just because I felt like I needed to do and try SOMETHING. It was SOOOOO worth it! I paid in total (hotel, food, transportation, testing, consultation) around $3,000 out of pocket and I don't have medical insurance coverage of any type. But it was worth it, and I got "reimbursed" with my health back and a renewed ability to work and earn an income for myself and family. Not everybody who goes the distance for better medical care ends up recovering from their disease, but I did, and I think the mere chance of it is worth the effort. We had several years of various efforts, various doctors, and seeking out the best person to advise on my particular case. It was all worth it. I have my life back now. I couldn't have "figured it all out myself". Even if I didn't get the great health results that I was fortunate enough to end up with, I think it would have been worthwhile because I'd always have wondered otherwise: If I had tried harder, could I have recovered? Just knowing that I've done my part and done my best means a lot, regardless of the outcome in my health. Good luck! Oh, I forgot to add that UIHC worked with me about the cost. They had scheduled several tests (costing several thousand dollars) that were unnecessary because I had brought original films with me, and when they understood everything I had (I sent it to them in advance) they were able to cancel those tests and use my films instead. They answered all my questions, but it took a lot of phone calls before I found the right person who had actual numbers rather than roundabout estimates. Mayo should be able to work with you about costs, and tell you up front exactly how much various tests will cost and which tests your doctor has arranged for you. It might take a few phone calls and following-up on your part. Again, good luck!
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