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IceLizard

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Posts posted by IceLizard

  1. Wow, that is strange. Only 3 steps to get to 190 bpm, and it was a delayed response. No wonder you feel sick. A high heart rate like that could be an exaggerated response to not getting enough oxygen to the brain, not because of low O2 in the blood, but because the oxygenated blood is not reaching the brain or because it is being utilized properly by the brain.

    Turning blue is a sign of hypoxia (you turn blue because the blood in your face is blue. Blood turns blue when its oxygen concentration is lower), so I would expect the readings to drop below 90 when you are turning blue. (Or, I could be wrong...)

    There are different kinds of hypoxia, listed in detail here. http://lungcancer.about.com/od/Respiratory-Symptoms/a/Hypoxia.htm

    I hope you find some answers soon. These problems, while interesting medically, do not sound fun at all.

  2. Hi MakeMeErised,

    You are right to weigh the pros and cons of extensive testing, especially when the tests are not definitive anyway. From what I have read, the best they can do with some people is basically diagnose "probable" mitochondrial disease and then treat it as such.

    But, if the problems you are having are NOT the result of mitochondrial disease, then testing may be more conclusive. Have you ruled out other causes of dysautonomia that could be causing your problems (turning blue, ect.)?

    Have you tried looking for healthcare at healthcare.gov? If your income is low enough your health insurance is subsidized, so you won't have to pay the full cost.

  3. Hi Gemma,

    Cymbalta causes reuptake of Serotonin just like SSRIs. I am on the smallest dose available and do not tolerate more. I am also being investigated for MCAS, and if I do have it I will consider going off of it completely. I have been on it for 9 years and I became a lot more functional on it, so I won't go off of it unless I have to. The reason MCAS patients have to be careful is that sometimes they present with high serotonin already and adding an SSRI (like Paxil) or SNRI (like Cymbalta) can cause Serotonin Syndrome. However, not all MCAS patients have high serotonin, so it really depends on the person. I am slowing coming off of the Paxil because I do not think it is helping overall and because I am already on Cymbalta.

    You might consider talking with your doctor about Wellbutrin instead. It is an antidepressant that works immediately and mostly acts on dopamine instead of serotonin. http://en.wikipedia.org/wiki/Bupropion

    Its the last medication on the list of "What helps" : http://www.dinet.org/index.php/information-resources/pots-place/pots-what-helps

    More information on Mast Cell disorders and medications that help and others that should be avoided: http://www.mastocytosis.ca/treatment.htm

  4. I agree with the other posters. The beta blocker may not be helping the breathing issues, but having your breathing stop while sleeping is still not normal while on them. A sleep study would be a good idea to help determine what is really going on when you try to sleep. I hope you find a good doctor who can give you some answers so you can get some rest!

  5. Hi MakeMeErised,

    I'm sorry, this must be very frustrating and scary. I know what your doctor says about the high heart rate causing your seizures. That is what usually happens with me. I can also be triggered by being startled, though. I do not have issues with turning blue or a severe feeling like I can't get enough oxygen if my heart rate is normal, though sometimes it feels like my breathing is being suppressed and I have to make myself breathe.

    I use this pulse oximeter, which is working well and much less expensive than one I would have gotten locally ($25 vs $65): http://www.amazon.com/ChoiceMed-Fingertip-Oximeter-Lanyard-Protective/dp/B009EDQ3GE/ref=sr_1_3?s=hpc&ie=UTF8&qid=1398156386&sr=1-3&keywords=pulse+oximeter

    I agree with Freaked about where the investigations should be going. I hope you can find some answers soon.

  6. Hi Gemma,

    Paxil did help some, but did not work as well for me as Cymbalta. Since we suspect possible Mast Cell issues, I am tapering off of the Paxil because it is not a good idea to be on SSRIs with Mast Cell Activation disorder.

    Cymbalta is related to Paxil, but is is an SNRI instead of an SSRI, which means it acts on norepinephrine as well as serotonin. It takes about the same amount of time to start working.

    Side effects from the Paxil (sedation) took a little less than a week to go away for me.

  7. Hi Chrissy,

    Nice to hear from you! I'm from Louisiana, too. I traveled to see Dr. Grubb from Covington, LA. I now live in Monroe. I had seen several other doctors about dysautonomia, so I already had test results like the tilt table test to bring with me. He did not order new tests for me, but to my surprise starting examining my joints. He diagnosed me with Joint Hypermobility Syndrome and spent a long time explaining the condition to me. He told me that it was the cause of my POTS. He is a very kind and caring doctor, and even sent me a book and several journal articles about POTS through the mail without my even asking. Since you live so far away he will want to work with your local doctors to continue your care. Do you have a doctor near you who can help you with this?

    I am having sensory overload issues as well. For me if I am startled, it can trigger shaking and if its really bad what looks like a seizure. I was tested for seizures and it came back negative for epilepsy. I also have autistic-like issues, and as I child was diagnosed with Asperger syndrome. I am not homebound, but I have trouble going out in noisy environments like the grocery store without feeling like I am near an attack. I take a Benzo to help me with this, Librium, and it helps me a lot, but I don't like to use it too much because it can be addictive, so I take a low dose daily then a little more if I am triggered. I see you are on Xanax, is that not helping you enough?

    I also have weakness in the legs at times and find that I cannot use them when my POTS is acting up.

    I saw Dr. Grubb a long time ago, about 9 years, at a time when my life was very unstable and I ended up moving and changing doctors. So, I did not really get to continue the care like I should have with a local doctor. But, it was really worth it the 2 times I did get to see him.

    Feel free to message me if you'd like to talk more!

  8. Even though I have an EDS diagnosis, I am having other testing done. Since MCAS and mitochondrial disease can come with EDS and cause dysautonomia, I am going to seek testing for those conditions. Monday I am going to be talking to my allergist about MCAS.

    I am trying to narrow down this list of possible causes: http://www.dysautonomiainternational.org/page.php?ID=150

    Also, people with EDS can have Arnold Chiari Malformation or cervical cranial instability, and these can cause dysautonomia as well.

  9. Hi Gemma,

    I was on Cymbalta my entire time through college without impairments in my cognitive function and it improved my autonomic function so I could be upright for longer periods of time. According to dinet,

    "Selective Serotonin Reuptake Inhibitors (SSRI's) are sometimes used to treat those with autonomic disorders. SSRI's are used because serotonin is the principal neurotransmitter that the brain uses to govern autonomic control, in particular to govern blood pressure (Haran, 2004). Studies have shown that some patients with autonomic disorders may have disturbances in central serotonin production and regulation (Grubb & Karas, 1998). SSRI treatment can suppress the sympathetic nervous system (Shores, Pascualy, Lewis, Flatness & Veith, 2001). Venlafaxine is particularly effective, possibly due to its actions on norepinephrine as well as serotonin. It has been reported that SSRI's may be effective in treating the chest pain that is associated with dysautonomia (Low, 2000). However, the FDA has issued a public health advisory regarding antidepressants, and they should be used with caution."

    Cymbalta is in the same class as Venlafaxine and is also considered more helpful for POTS than other SSRIs.

    Since I could not increase my dose of Cymbalta without side effects, my doctor also put me on Paxil. Paxil caused me to be very sedated for the first few days or more which I have heard is normal for Paxil. I have tried other SSRIs and they have caused me to feel spacey or not myself at all. They are not really something you want to start during school because there are often side effects that can make school more difficult. Often the side effects vanish after some time, like with the Paxil, but it is an interruption in your normal functioning. It is best to start with the smallest dose, or even the smallest dose divided, if you can cut it up, until you know how it will effect you. You could try them during a break in school if the break is long enough. The side effects start soon after taking the drug and can last near a week, more than a week and they probably are not going to go away for you (not entirely sure about the time frame here, you might want to check with someone else as well). Benefits from SSRIs take time to be felt; my doctor said to give it two months.

    I used medical withdrawals to be able to drop classes after the withdraw date without penalty. The problem with this approach is if you withdraw from enough classes during your semester you will be reduced to part-time. I also used normal withdrawals

    (I dropped before the deadline) when I found I could not handle full-time. If you are nearly done with a course, but can't be there to finish the work because of health issues, you can take what is called an incomplete. Then you will have a certain amount of extended time to finish the course, take make up exams, and earn a grade. Withdrawals show up as W's on your transcript and do not affect GPA. Incompletes show up as I's until you complete them, at which point you are given a normal grade. You might investigate how all this works at your school and what the deadlines are for dropping classes and taking withdrawals or incompletes.

    Yes, the weather is certainly nice here, too :). I am going to enjoy it before it gets to be too hot for me to be outside comfortably.

  10. Hi Gemma,

    I was diagnosed with POTS when I was an undergraduate, then I went back after a year and finished a mathematics degree. I managed to do this by having an exemption from being full-time, so I could go part-time whenever I needed to, all the way down to 1 class sometimes. I also used incompletes or medical withdrawals on my classes quite a bit. I had accomodations with the disability office for frequent breaks and consideration for missed classes and make up work.

    Graduate school has proven to be much harder on me. In order for me to receive funding I needed to have an assistantship while taking classes. That plus a new baby caused my health to deteriorate again and I had to quit graduate school. I am about 5 classes away from a master's degree, so when I am ready I can maybe take 1 class at a time and get there.

    Right now I am not in school but I am tutoring students privately in math. When I am up to it, I plan on expanding what I do into a small business. My husband and I could certainly use the income, but I have to be careful not to worsen my health. Since I can choose how many students to have at one time, this hopefully will work out. I hope you can finish school so that you can get to do home care.

    Just a question, though, with home care would you be required to lift patients or heavy equipment?

  11. Goschi,

    I also had the some of the same issues with Clonidine. It worsened my orthostatic intolerance and made my heart rate faster. It is a vasodilator, btw. I also had trouble with depression. I have stopped this medication, and now use Librium to help with adrenergic spells, which I seem to tolerate better.

  12. I just want to let you know that I had to leave after my 1st semester of college, but I did make it back a year later and I have finished with a Bachelor's in mathematics. During the time I was out I was diagnosed with POTS, syncope, and Joint Hypermobility syndrome. When I returned to college I had a lot of trouble and sometimes I had to use a wheelchair. I had numerous episodes on campus and the campus police got to know me pretty well. Sometimes I had to do medical withdrawals of my classes and be part-time, so it took me 5 years to finish instead of 4. So, it is possible to get better and pace yourself well enough to get something done. At least in my case.

    But this year I pushed myself too hard in graduate school because I had to in order to stay in the program and I wound up extremely sick and in the hospital quite a bit. I am talking cannot even sit up without a heart rate of 190 and passing out with convulsions sick. I am doing much better than that since leaving school, but like I said I have to be careful. I am about 5 classes away from a master's degree so when I am up to it again I will try to finish with that, even if it is one class at a time.

    So, don't give up on school just yet. You might just get well enough to go back. I didn't think I would be able to when I was at my worst, but it did improve with lots of rest and a low-stress environment. Give yourself time to rest and recover (for me this meant an entire year).

    I am trying the creatine and I find that I like its sandy texture when mixed loosely in water. I hope that is a sign that it will help me, but I haven't been on it long enough to tell yet.

    P.S. Thanks for the suggestion of tutoring online. I did do this for 2 years before I went back to school. I was able to do it well, but I did not make much money and I prefer to help people in person. I currently have 2 regular students that I meet with in person for tutoring and it is going very well so far. I want to add more students and make it my own business, but I am afraid of pushing myself too far. We'll see. I hope you can start on your writing project when your brain fog lifts.

  13. There are similarities between your history and mine. I was ambitious and I used to push myself very hard and then crash. I had good grades and graduated from a special gifted boarding school. But, something was not right, and had not been right since childhood when I would tire and become out of breath so much faster than the other kids during sports. Then in college it got to the point where I couldn't push myself any farther. I wound up in the hospital and was practically bedridden with dysautonomia for about a year. I have recovered somewhat from that, but it has not been the same. I have to be very careful not to trigger another tachycardic convulsive attack again. It's hard because I want to start a part-time job tutoring kids in math but, I am not sure how much I can actually handle. Sometimes it seems everything I try I end up falling on my face again and having to build myself back up. But I don't want to give up trying.

    I don't know whether this is mitochondrial disease or what, but I tire so easily, both mentally and physically. I am being testing later this month to see if I have MCAS because I am having some signs of that (MCAS and mito symptoms overlap a lot I am finding). I probably need to be tested for mitochondrial disease as well. Even if I am tested for Mito, I am not sure what can be done about it. Isn't the treatment just supplements and vitamins right now? I mean it would be nice to know more about what is going on, but is traveling out of state for tests that may be inconclusive anyway really worth it?

  14. My feet become very hot as well. During warm or hot weather my feet and hands turn red and become uncomfortably hot. I can't wear closed shoes during warm weather for this reason. I like to take cool baths or put my feet on cool linoleum floors. I am thinking of making "cooling gloves" so that the palms of my hands can be cooled when I become overheated. I have a cooling vest, but it only cools my trunk and not my extremities which still feel hot.

    I don't take showers anymore, just warm or cool baths depending on whether I feel cold or hot. When I did take showers I used a shower seat that is made for elderly or disabled people.

  15. I have had times when I absolutely needed it to be able to get out at all, and times when I didn't need it at all (except after episodes). I inherited my wheelchair from my grandmother. I did try using it for preventative purposes at school so I would not pass out on campus, but I found that using it throughout the day made me feel worse in the long run (deconditioning perhaps?), so I went back to walking and resting as needed.

    I sometimes need to use them in airports because I do not do well rushing through crowds with luggage. Grocery stores should have their own wheelchairs or power chairs for customer use. I've used those before, too. Maybe try going out to a store that has one?

  16. Well, too much activity can actually cause the muscles to break down, which also puts stress on kidneys. See here:

    From http://mda.org/disease/mitochondrial-myopathies/signs-and-symptoms

    "Exercise intolerance, also called exertional fatigue, refers to unusual feelings of exhaustion brought on by physical exertion. The degree of exercise intolerance varies greatly among individuals. Some people might only have trouble with athletic activities like jogging, while others might experience problems with everyday activities like walking to the mailbox or lifting a milk carton.

    Sometimes, exercise intolerance is associated with painful muscle cramps and/or injury-induced pain. The cramps are actually sharp contractions that can seem to temporarily lock the muscles. Injury-induced pain is caused by a process of acute muscle breakdown called rhabdomyolysis, leading to leakage of myoglobin from the muscles into the urine (myoglobinuria). Cramps or myoglobinuria usually occur when someone with exercise intolerance “overdoes it,” and can happen during the overexertion or several hours afterward."

    Also check out this link for beneficial exercise and Mito disease: http://www.mitocanada.org/about-mitochondrial-disease/how-is-mitochondrial-disease-treated/exercise-and-activity/

    Besides the muscle issue, you are turning blue. I would try not to push through because turning blue is a serious indicator of lack of oxygen. People have died from mitochondrial disease, but the presentation is so variable that it can run from very mild to life-threatening, so I can't really say for sure how much danger you are in. My pulse oximeter does help me to avoid episodes or be able to treat them early, before I am in a full-blown attack.

  17. Hi Querier,

    Thank you for sharing your story. You have been through a lot, glad you have found us. I hope you can keep from passing out at work. On this page are some suggestions for improving POTS symptoms, although they should work with low blood pressure episodes as well. If you scroll past the medications you will see diet and lifestyle tips that might help prevent you from passing out.

    http://www.dinet.org/index.php/information-resources/pots-place/pots-what-helps

    P.S. I have a medic alert bracelet that says I have POTS and syncope and "Do not make me sit or stand up before ready." This is because people would try to get me up too soon and I would pass out again and have convulsions. So far people have gotten the message.

    Best wishes!

  18. Sorry to hear about another episode. The muscle weakness and loss of muscle tone also points to problems with mitochondria see here: http://www.bcmj.org/articles/mitochondrial-disease-clinical-manifestations-overview

    Please be very careful not to overly tax your body, it can be dangerous if you do have mitochondrial disease.

    Do you have a finger pulse oximeter to monitor your oxygen levels and heart rate? If you are turning blue it could help you or someone near you see more clearly what is going on. I just ordered to replace mine. Here's a list on amazon: http://www.amazon.com/s/ref=a9_asi_1?rh=i%3Aaps%2Ck%3Afinger+pulse+oximeter&keywords=finger+pulse+oximeter&ie=UTF8&qid=1397367475

  19. If I am not mistaken, people treated for sepsis can improve rapidly once the medication is started. They can also deteriorate rapidly if no medicine is given. The high fever suggests infection instead of dysautonomia. People with dysautonomia can run low fevers, but high ones suggests the body is raising the temperature to fight an infection of some kind. High fevers are also sometimes found in Serotonin Syndrome, which is probably unrelated to your case.

    Bless you and your boy.

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