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Everything posted by masumeh

  1. Oh update on my Tumeric trial... I went two weeks, but really didn't notice anything extraordinary. No really visible improvement, but maybe some subtle energy gain. Not able to do more though. A bit easier to breath...does that make sense? But then I had some kidney pain. I immediately stopped the Tumeric. (It was 500MG from GNC, by the way.) Kidney pain went away. I waited two weeks, then started to add it to my food (only once a week). I figure that couldn't hurt.
  2. So, if it's only anti-inflammatory, could Tylenol do the same thing?? But I heard it has antioxidants too...anybody got the DL on that? Am I sounding ghetto, or just old here? Well, seriously, my POTS doc said antioxidants are good for POTS patients, and recommended high-antioxidant foods like mushrooms, egg whites, blueberries, almonds, and oceanic fish. I found that blueberries worked. If anybody wants something that's available season-round, Odwalla choco-chocolate bars were just like taking Midodrine for me...I even forgot my medication the day I ate it. High energy and clear head. Very good. If anyone is in the Middle-East, camel products are also good for peeps with heart disease....it also felt just like taking Midodirne, eating the camel meat, soup from bones, or drinking the milk (which is so torturously gaseous, I couldn't do it again). Cranberry supplement capsules also helped me regain more mental clarity...but I don't know why...is it antioxidants, antibacterial/detox/ or what effect. Also, I got better for two weeks, then it plateaued (sp?). So I stopped. But good effects remained with me...unlike the blueberries and Odwalla bar, which last only the day or two after I consume it. Difficult with natural substances to isolate chemical components. Man, did anybody see "Matters of Life and Death", from Science Odyssey [boston Video production availible through Discovery Channel Online Store]...? This researcher wroked throughout his adult life to discover why Pallegra was cured with nutricious diet...then a few years after his death, another researcher found it was Niacin; the vitamin was then added to flour, pasta, cereal, etc. One day, maybe we'll know why and how these things work with us. Or why they work with some of us and not others.
  3. Wow congrats! New babies are soo much blessing, and soo much work too! I'm sure you have your hands full. I also had several days of labor after a cervical-insert induction. When I had my daughter, she was full term though. Still, my cervix wouldn't dialate, even with the insert and 2.5 month premature labor, the last two weeks of which were two minutes apart day and night. My OB manually dialated my cervix, manually broke the water, and vaccuum suctioned my daughter's head through. Baby was big and heavy, but no amount of pressure, contractions, or even their chemical inductions to soften the cervix did anything to dialate me. 36 hour hard labor w/2 kinds of induction (plus epi and nobain). But it's all worth it. I wonder if the cervical dialation problem has something to do with autonomic dysfunction?! Did anyone else have an "Unfavorable Cervix" diagnosis during delivery? I understand that premature delivery would probably not have a favorable cervix...but ppl who are full term with a big, heavy baby...and still the cervix will neither shorten nor dialate? That sounds like a neuro issue, doesn't it?
  4. Hi, I had a pulmonary function test about 7 years ago, beginning of my POTS adventures. At the time, I did not know I had POTS, just diagnosed with syncope. But I had suffered a pulmonary embolism with the pregnancy that set off the POTS sympotoms (EBV/mono infection was simultaneous). So, when I still felt short of breath several months post-miscarriage, I returned to my pulmonologist. He conducted a PFT, just to be on the safe side. It was normal. I remember feeling light headed and like I was about to faint. The technician kept telling me, rather irrately, I was not breathing deeply enough. I tried to cooperate, but it was frightening to be locked in a transparent refrigerator with a nose plug and huge, sterile-tasting tube thing in my mouth...also, it just felt like a pre-fainting sensation. When I told her I have syncope, she was like, "Oh, nevermind. Don't push yourself." Probably if I had followed her instructions thoroughly, I would have fainted. Hyperventilating can lead to siezures also, and I just found out I have epilepsy, so maybe that was a pre-seizure feeling too? I don't know. As for your painful breathing, did you check out the possibility of a diaphragm hole? My sister-in-law has that, and they caught it with a simple x-ray. She gets pain sometimes, and it is sometimes referred pain, if I remember correctly, to her back. I can ask her what it feels like, exactly, next time she calls. Also, did you check out asophegeal pain? I used to get spasms of pain, and I couldn't breath in or it would hurt like crazy...turned out to be asophogeal spasms. It really did not feel like GI-track related...felt like a heart attack. But the meds to stop spasms fixed the pain instantly. So I think it was a correct diagnosis. Good luck.
  5. Hallucinations can happen with severe depression. Not all hallucinations indicate psychosis (as in detachment from reality). Try not to be alone too much. If your hallucinations have a theme, try to resolve feelings related to that. Ditto about medication and side-effects. Are you on steroids? Like Florinef? Steroids are famous for inducing psychosis, hallucinations, and more. Don't be too scared. These things happen more frequently than imagined, to perfectly normal people who are under totally abnormal stress or medication that does not suite their body chemistry.
  6. Poohbear, I went to the site you quoted. NIH declares that it adheres to the Hellenski Declaration that I quoted above. The section you list is related to consent forms, and the questions are suggested subtitles for researcher use in developing the document. The answer to "Will I receive results?" should be Yes. It's really sad to me that participants are routinely kept in the dark about their rights; and sadder still that they are denied their rights even when they explicitly request them. I recently completed a grad paper about research ethics, so this is fresh in my mind. My field is psychology, but psychological, social, and biomedical research all depend on the same history of Belmont, Hellinski, and a few other landmark ethical declarations. It's known and discussed in professional and research ethics that clients often do not know their rights, and raising awareness about rights is an important yet neglected activity. NIH has a document called 'Gray Booklet: Guildlines for the conduct of research involving human subjects at the NIH', which is also accessable at www.nih.gov Bottom line for biomedical research is that you as the participant are suppose to benefit. You are not suppose to be simply used and forgotten. If you just remind the researchers you're dealing with of that, and how you suffered by leaving your medication in order to obtain some more knowledge of your disease for your treatment plan, then I think they should give you whatever info you are looking for. If they don't, it's really culpable, and you should contact the AMA to make a report of violated participant rights. That's my opinion anyway.
  7. Well, I think this issue is very important, since many of the visitors to DINET.org do participate in medical studies. It is important to know your rights, which are not necessarily fully described in the consent forms you sign. You are fully entitled to benefits of the study, including knowing if a particular treatment is beneficial for you as an individual. Although you are a participant, you do not lose any rights to responsible physician care, especially when the research is care-oriented. Your patient-physician relationship remains entact, and you are still a patient with rights. And of course, blind studies do not mean that every researcher is blind, or that it is not possible to uncover names which were replaced by codes. In fact, participants can withdraw at ANY time, even post-experiment. That means that researchers need to be able to go back into records and delete the person's information using only their name (since they are not informed of their recorded code). Here is an except with some bold relevant areas. I don't know what the state-by-state statutes are, but I know that they usually need to conform with these internationally agreed upon declarations. Policy WORLD MEDICAL ASSOCIATION DECLARATION OF HELSINKI Ethical Principles for Medical Research Involving Human Subjects Download the PDF file Adopted by the 18th WMA General Assembly, Helsinki, Finland, June 1964, and amended by the: 29th WMA General Assembly, Tokyo, Japan, October 1975 35th WMA General Assembly, Venice, Italy, October 1983 41st WMA General Assembly, Hong Kong, September 1989 48th WMA General Assembly, Somerset West, Republic of South Africa, October 1996 52nd WMA General Assembly, Edinburgh, Scotland, October 2000 53th WMA General Assembly, Washington 2002 (Note of Clarification on paragraph 29 added) 55th WMA General Assembly, Tokyo 2004 (Note of Clarification on Paragraph 30 added) 59th WMA General Assembly, Seoul, October 2008 INTRODUCTION The World Medical Association (WMA) has developed the Declaration of Helsinki as a statement of ethical principles for medical research involving human subjects, including research on identifiable human material and data. The Declaration is intended to be read as a whole and each of its constituent paragraphs should not be applied without consideration of all other relevant paragraphs. Although the Declaration is addressed primarily to physicians, the WMA encourages other participants in medical research involving human subjects to adopt these principles. It is the duty of the physician to promote and safeguard the health of patients, including those who are involved in medical research. The physician's knowledge and conscience are dedicated to the fulfilment of this duty. The Declaration of Geneva of the WMA binds the physician with the words, "The health of my patient will be my first consideration," and the International Code of Medical Ethics declares that, "A physician shall act in the patient's best interest when providing medical care." Medical progress is based on research that ultimately must include studies involving human subjects. Populations that are underrepresented in medical research should be provided appropriate access to participation in research. In medical research involving human subjects, the well-being of the individual research subject must take precedence over all other interests. The primary purpose of medical research involving human subjects is to understand the causes, development and effects of diseases and improve preventive, diagnostic and therapeutic interventions (methods, procedures and treatments). Even the best current interventions must be evaluated continually through research for their safety, effectiveness, efficiency, accessibility and quality. In medical practice and in medical research, most interventions involve risks and burdens. Medical research is subject to ethical standards that promote respect for all human subjects and protect their health and rights. Some research populations are particularly vulnerable and need special protection. These include those who cannot give or refuse consent for themselves and those who may be vulnerable to coercion or undue influence. Physicians should consider the ethical, legal and regulatory norms and standards for research involving human subjects in their own countries as well as applicable international norms and standards. No national or international ethical, legal or regulatory requirement should reduce or eliminate any of the protections for research subjects set forth in this Declaration. BASIC PRINCIPLES FOR ALL MEDICAL RESEARCH It is the duty of physicians who participate in medical research to protect the life, health, dignity, integrity, right to self-determination, privacy, and confidentiality of personal information of research subjects. Medical research involving human subjects must conform to generally accepted scientific principles, be based on a thorough knowledge of the scientific literature, other relevant sources of information, and adequate laboratory and, as appropriate, animal experimentation. The welfare of animals used for research must be respected. Appropriate caution must be exercised in the conduct of medical research that may harm the environment. The design and performance of each research study involving human subjects must be clearly described in a research protocol. The protocol should contain a statement of the ethical considerations involved and should indicate how the principles in this Declaration have been addressed. The protocol should include information regarding funding, sponsors, institutional affiliations, other potential conflicts of interest, incentives for subjects and provisions for treating and/or compensating subjects who are harmed as a consequence of participation in the research study. The protocol should describe arrangements for post-study access by study subjects to interventions identified as beneficial in the study or access to other appropriate care or benefits. The research protocol must be submitted for consideration, comment, guidance and approval to a research ethics committee before the study begins. This committee must be independent of the researcher, the sponsor and any other undue influence. It must take into consideration the laws and regulations of the country or countries in which the research is to be performed as well as applicable international norms and standards but these must not be allowed to reduce or eliminate any of the protections for research subjects set forth in this Declaration. The committee must have the right to monitor ongoing studies. The researcher must provide monitoring information to the committee, especially information about any serious adverse events. No change to the protocol may be made without consideration and approval by the committee. Medical research involving human subjects must be conducted only by individuals with the appropriate scientific training and qualifications. Research on patients or healthy volunteers requires the supervision of a competent and appropriately qualified physician or other health care professional. The responsibility for the protection of research subjects must always rest with the physician or other health care professional and never the research subjects, even though they have given consent. Medical research involving a disadvantaged or vulnerable population or community is only justified if the research is responsive to the health needs and priorities of this population or community and if there is a reasonable likelihood that this population or community stands to benefit from the results of the research. Every medical research study involving human subjects must be preceded by careful assessment of predictable risks and burdens to the individuals and communities involved in the research in comparison with foreseeable benefits to them and to other individuals or communities affected by the condition under investigation. Every clinical trial must be registered in a publicly accessible database before recruitment of the first subject. Physicians may not participate in a research study involving human subjects unless they are confident that the risks involved have been adequately assessed and can be satisfactorily managed. Physicians must immediately stop a study when the risks are found to outweigh the potential benefits or when there is conclusive proof of positive and beneficial results. Medical research involving human subjects may only be conducted if the importance of the objective outweighs the inherent risks and burdens to the research subjects. Participation by competent individuals as subjects in medical research must be voluntary. Although it may be appropriate to consult family members or community leaders, no competent individual may be enrolled in a research study unless he or she freely agrees. Every precaution must be taken to protect the privacy of research subjects and the confidentiality of their personal information and to minimize the impact of the study on their physical, mental and social integrity. In medical research involving competent human subjects, each potential subject must be adequately informed of the aims, methods, sources of funding, any possible conflicts of interest, institutional affiliations of the researcher, the anticipated benefits and potential risks of the study and the discomfort it may entail, and any other relevant aspects of the study. The potential subject must be informed of the right to refuse to participate in the study or to withdraw consent to participate at any time without reprisal. Special attention should be given to the specific information needs of individual potential subjects as well as to the methods used to deliver the information. After ensuring that the potential subject has understood the information, the physician or another appropriately qualified individual must then seek the potential subject's freely-given informed consent, preferably in writing. If the consent cannot be expressed in writing, the non-written consent must be formally documented and witnessed. For medical research using identifiable human material or data, physicians must normally seek consent for the collection, analysis, storage and/or reuse. There may be situations where consent would be impossible or impractical to obtain for such research or would pose a threat to the validity of the research. In such situations the research may be done only after consideration and approval of a research ethics committee. When seeking informed consent for participation in a research study the physician should be particularly cautious if the potential subject is in a dependent relationship with the physician or may consent under duress. In such situations the informed consent should be sought by an appropriately qualified individual who is completely independent of this relationship. For a potential research subject who is incompetent, the physician must seek informed consent from the legally authorized representative. These individuals must not be included in a research study that has no likelihood of benefit for them unless it is intended to promote the health of the population represented by the potential subject, the research cannot instead be performed with competent persons, and the research entails only minimal risk and minimal burden. When a potential research subject who is deemed incompetent is able to give assent to decisions about participation in research, the physician must seek that assent in addition to the consent of the legally authorized representative. The potential subject's dissent should be respected. Research involving subjects who are physically or mentally incapable of giving consent, for example, unconscious patients, may be done only if the physical or mental condition that prevents giving informed consent is a necessary characteristic of the research population. In such circumstances the physician should seek informed consent from the legally authorized representative. If no such representative is available and if the research cannot be delayed, the study may proceed without informed consent provided that the specific reasons for involving subjects with a condition that renders them unable to give informed consent have been stated in the research protocol and the study has been approved by a research ethics committee. Consent to remain in the research should be obtained as soon as possible from the subject or a legally authorized representative. Authors, editors and publishers all have ethical obligations with regard to the publication of the results of research. Authors have a duty to make publicly available the results of their research on human subjects and are accountable for the completeness and accuracy of their reports. They should adhere to accepted guidelines for ethical reporting. Negative and inconclusive as well as positive results should be published or otherwise made publicly available. Sources of funding, institutional affiliations and conflicts of interest should be declared in the publication. Reports of research not in accordance with the principles of this Declaration should not be accepted for publication. ADDITIONAL PRINCIPLES FOR MEDICAL RESEARCH COMBINED WITH MEDICAL CARE The physician may combine medical research with medical care only to the extent that the research is justified by its potential preventive, diagnostic or therapeutic value and if the physician has good reason to believe that participation in the research study will not adversely affect the health of the patients who serve as research subjects. The benefits, risks, burdens and effectiveness of a new intervention must be tested against those of the best current proven intervention, except in the following circumstances: The use of placebo, or no treatment, is acceptable in studies where no current proven intervention exists; or Where for compelling and scientifically sound methodological reasons the use of placebo is necessary to determine the efficacy or safety of an intervention and the patients who receive placebo or no treatment will not be subject to any risk of serious or irreversible harm. Extreme care must be taken to avoid abuse of this option. At the conclusion of the study, patients entered into the study are entitled to be informed about the outcome of the study and to share any benefits that result from it, for example, access to interventions identified as beneficial in the study or to other appropriate care or benefits. The physician must fully inform the patient which aspects of the care are related to the research. The refusal of a patient to participate in a study or the patient's decision to withdraw from the study must never interfere with the patient-physician relationship. In the treatment of a patient, where proven interventions do not exist or have been ineffective, the physician, after seeking expert advice, with informed consent from the patient or a legally authorized representative, may use an unproven intervention if in the physician's judgement it offers hope of saving life, re-establishing health or alleviating suffering. Where possible, this intervention should be made the object of research, designed to evaluate its safety and efficacy. In all cases, new information should be recorded and, where appropriate, made publicly available. 22.10.2008
  8. I couldn't find more research-specific ethical codes entitling patients to their records...but patient rights include the right to view and obtain a copy of their records. In psychology (APA, 2002), this goes for research participants as well. In fact, they are entitled to a report on the study's overall findings. I assumed that medical associations have even stiffer laws, but maybe they don't. Anyway, I think you should be able to get your records. And if you can't, you should contact the AMA and ask if this violates your patient rights. A participant is also a patient with rights (like do no harm, optimal treatment, etc.). This is an excerpt from AMA's website: Opinion 7.02 Records of Physician: Information and Patients Notes made in treating a patient are primarily for the physician?s own use and constitute his or her personal property. However, on request of the patient, a physician should provide a copy or a summary of the record to the patient or to another physician, an attorney, or other person designated by the patient. Most states have enacted statutes that authorize patient access to medical records. These statutes vary in scope and mechanism for permitting patients to review or copy medical records. Access to mental health records, particularly, may be limited by statute or regulation. A physician should become familiar with the applicable laws, rules, or regulations on patient access to medical records. The record is a confidential document involving the patient-physician relationship and should not be communicated to a third party without the patient?s prior written consent, unless required by law or to protect the welfare of the individual or the community. Medical reports should not be withheld because of an unpaid bill for medical services. Physicians may charge a reasonable fee for copying medical records. (IV) Report: Issued prior to April 1977; Updated June 1994 ?2007 American Medical Association. All Rights Reserved
  9. This used to happen to me anytime I stood up. Literally, I could hear nothing else. Very loud. But as the disease decreased, this has happened less and less. Now it only really comes when I am dehydrated. Maybe you became dehydrated during your exercise the day before?? I think we need a lot of extra fluids when exercising...like, I used to be an athlete (before POTS), and I never needed as much water as I do now with very light exercise and no sweating....wierd but true. Try some gatorade or V8 juice and see if it goes away with fluids.
  10. some drugs can induce POTS like symptoms, but they plainly warn so in their side-effects pamphlet. Example, I saw a Cymbalta (anti-anxiety) commercial that said, "May cause dizziness upon standing." I never heard of SSRIs causing POTS, however. In fact, Dinet lists SSRIs as a possible treatment route. See "What Helps" section for more details.
  11. Sick suddenly at age 20. Diagnosed 4.5 years later, age 24. I was misdiagnosed as hypoglycemic, anemic, psychologically disturbed (conversion disorder or panic attacks). Most doctors simply did not seem to perceive the extent of disability and hardship the symptoms were causing. I saw more than 40 the first year of illness, when I was barely able to walk, couldn't speak coherently, and looked like a ghost. They didn't know the cause, and they didn't care. I found my own diagnosis, then confirmed it with a POTS specialist I found here on DINET's physician list. He's really awesome, and he really cares about all his patients. You can tell the difference. My impulse was to take the diagnosis and slap previous airhead doctors in the face with it. But I resisted the urge. I'm semi-functional now. I've finished college (finally), started grad school, and am looking forward to working soon. As my POTS doctor said when he diagnosed me, it's just really sad that I was left untreated for those years. In a way, getting treatment was like coming back from the dead. Older and wiser. I suppose.
  12. Patient Rights laws and ethics include research participants, and we all have the right to our personal records and test results. However, it might be complicated for them to look it up, since they probably tried to mask your ID in the records for anonymity, assigning you a number that replaces your name. There is usually a list somewhere with the code-to-name matches...but you will have to find the right person to ask in that case. Good luck.
  13. I would say you need to take whatever route you can to see a specialist soon. Chronic illness is very disruptive to one's life...and you mentioned having a job. I think you should see a specialist, maybe not necessarily the one you mentioned, since he's far from you. But see someone, before whatever you have takes its toll. Many ppl here have lost jobs due to POTS or cfs. ER does nothing bc they are not suppose to be the ones dealing with chronic conditions; they are emergency personnel. You need someone who can follow-up and dig a bit deeper. Someone familiar with POTS wouldn't hurt. Take care of yourself.
  14. By the way, Phergan is cheaper than Zofran. But it can increase your HR. It actually sent me into convulsions!
  15. I get nausea in the morning and evening. The following helps: 1) Avoid sugar; 2) Smelling (eating if you can cook with it) raw, fresh ginger root (cut); 3) Relaxation; 4) Distraction; 5) Salty snacks (like Cheetos); 6) Hydrating during non-nausea periods with Gatorade or V8 Juice. I cannot stress enough how much work and studying contributed to my nausea, although I liked those activities. My nausea only subsided significantly when I graduated. My appetite increased at the same time. After eating more for a month, my nausea lessened to almost nothing. But it comes back in spurts with flare-ups. Good luck!
  16. I can ID with a lot of the sypmtoms you listed, though not all of them. For example, the neuropathy, shooting down your arm--that one is NOT on my list. But vision stuff, excercise intolerance, and many others are totally POTS. One that I do not think is POTS, but perhaps it is, is the episode of heat rushing through the viens. I had that experience twice, both times were post-POTS (I mean, I had POTS at the time). However, both times were after eating chinese soup. And an allergist told me it sounded like an allergic reaction. It literally felt like fire surging through my viens. It was horrible, nauseating, and totally wrecked my energy for the coming days, though it only lasted about an hour. I also felt like I was swelling up, but I wasn't at all. Maybe you have allergies to something? I developed a number of food sensitivities after getting POTS.
  17. Hi and welcome to the forum, I hope you find this place helpful; I know I did. There are many friendly ears. Experiences we share here really make a difference in coping with dysautonomia. Your symptom description confused me a bit. I guess I had a hard time sifting through the emotional parts to get at the actual physiological events. You have trouble sleeping, eating, breathing, and have pain as well--is that right? I want to help you, if I can, just tell you whether it sounds anything like POTS. But I really am confused by the description. Can you list again, with some kind of succint, objective language?? I just have a hard time with the metaphores. It's good practice, I think, to refine and strip your symptom descriptions...easier for your doctors to get at your disease too... My aunt has sjogrens. She got in a car accident several years ago...very bad, and had brain damage too. Later, the sjogrens appeared. I wonder if there's any relationship, since you also had a car accident, and sounds like a bad one. She is always in and out of horrible illnesses because of the sjogrens and a hystorectomy that weakened her bones and damaged her liver in the long run (like 20 years of hormone replacement pills). Anyway, I know sjogrens *****. So here's to your patience with that! I'm gonna echo here...that the most important diagnostic tool in deciphering POTS from other diseases is the Tilt Table Test (TTT). It shows blood flow deficit to the brain. But you can also take your heart rate laying down (lay perfectly flat and still for ten minutes), then immediately after standing, two minutes later, five minutes later, ten minutes later. You can stand for up to half and hour, since NCS appears after as much as 30 minutes. If, when you stand up, your heart rate rises more than 30 beats compared to laying down, that is the telltale sign of POTS. Good luck with your medical struggles!
  18. Hi, I know there are a lot of issues going on. I just wanted to address the laying down on Midodrine thing... My POTS specialist prescribed Midodrine for me, 10mg, 4xs a day. I couldn't stay awake all day, and was worried about the pamphlet's warning not to lay down after taking it. When I asked my POTS specialist, he told me not to worry AT ALL about that because it only applies to patients with Parkinson's and it will not have that effect on POTS patients. Anyway, my BP is usually on the low side. If your wife has a history of hypertension, however, maybe her case would engender different advice. Oh, and the goosebumps do calm down after the first month or two. It's worth it pushing through a few side-effects in the beginning. Midodrine really changed my life. My "bad days" now would be like a dream type good day before Midodrine. And the benefits have lasted even though I no longer take the drug. As my doctor said, if you take it for 6 months, it can retrain your blood vessels to constrict properly, even when the drug is removed. Good luck to you guys. Let her know we're cheering for her!
  19. I tried it for the past week. 500 MG from GNC. I don't really notice a clear difference. It's a bit dry going down, so I take it with lots of water. I haven't had as many episodes (fainting spells/siezures) this week or the last week (not on Tumeric last week though, so maybe it's irrelevant?). I'll keep it up and see how it goes.
  20. I have a wheelchair. I bought it a couple years ago, thinking it would enable me to live my life despite having POTS. I wanted to shop and work outside the home. It didn't work out that way, however, because it takes too much energy to push it myself. I cannot do much in it, and I get really irritated by the stares that I IMAGINE people are giving me. Frankly, it makes me feel nervous, especially when we go out together as a family with my husband's relatives (we are an extended family, his parents and older sister included). My father-in-law is over 70, has suffered a stroke, and survived polio as a child which left him with a short leg. But he walks. I feel so odd being pushed in a wheelchair (I'm 27 years old) by him! Also, I can tell it makes my family members truly sad to see me in it. My daughter thinks it's cool because she likes to be pushed around on my lap (she's 5 years old). But my husband and his family practically cry when we dust it off during flare-ups. I'd just rather stay home than continuously put everybody through that. Also, although I'm not sure whether this is just my imagination or actually in their head, I sometimes suspect that they think I should fight harder, get better or something. Like, I feel pressured to recovery, and almost blamed because I can't. The wheelchair was part of accepting the permenance of the disease, for me at least. But it turned out that it didn't help in any other way.
  21. I'm glad she has a loving mom like you in her corner. Sounds like she got some heavy feelings out. That's probably a good thing. Check all her medication possible side-effects, just in case though. Some meds can cause suicidal thoughts, like certain Anti-Epileptic Drugs (AEDs) that are also prescribed for Migraine headaches.
  22. Long time no see, Bananas THanks for the work tip
  23. Isn't it lovely how this disease jumps in and gang beats you whenever you get any other illness, flu, infection, ect... Well, try to relax and push your chores back a week to let your body rest. There's not much other than patience and waiting that can help some times. It can definitely be way more frustrating than a person can really accept, but what other option do we have? Hope you feel better soon. -masumeh
  24. Just want to add, after reading some of your replies in this thread, that it doesn't sound like POTS alone. The pain thing, as someone else pointed out, does NOT sound like just POTS. I had pain when I fainted, but not when I simply moved. Has she seen a good neurologist? Has she had an MRI of her brain and spinal cord? If' it's muscle pain, can you give her Potassium? If her doc doesn't prescribe suppliments, you can give her Gatorade, bananas, berries, V8 Juice. Is it spasms, like muscle pain, or is it actually nerve pain (deeper, more electric than muscle pain)??? If it's nerve pain, my strongest advice is to find the best neuro you can access, even if you have to pay from pocket.
  25. There were too many replies for me to read. So I'm sorry if any of this is repeat type info... Firstly, we all feel for you and your daughter. Although POTS has a broad spectrum of severity levels, I guess we can all sypathize in one way or another. Secondly, I hope that your daughter gets better with time. If it's autonomic damage, her nerves might heal slowly over a four-year period. Coping with symptoms in the mean time is difficult, but potentially transitory. My personal experience is different because I did not suffer from POTS until age 20, suddenly with a mono infection (EBV). But I also spiralled for the first year. I was married, and I decided to become pregnant because I thought I was dying (I was undiagnosed) and I wanted to at least accomplish one life goal, having a child. I was bedridden, dizzy all the time, incoherent mentally and verbally, and very isolated except for a few loyal ppl (my husband, mother, and best friend). During my first trimester, I stopped fainting (although I was vomitting my brains out!). That was the beginning of a different, better level of functioning for me. Today, 7 years later, I can do my domestic routine with my daughter and husband without much perturbance from POTS. I am not able to work outside the house. But, as long as I limit my activities, I don't really FEEL like I have POTS. Flare-ups happen. But between them, I have months of calm and fun. One tip, I don't know if it's really a good one, is to forget the doctors and hospitals. In my worst year, that only wore me out and exaserbated my syptoms. Staying home, coping in my own ways, brought me more recovery and peace of mind. I was not diagnosed until four years later. At that time, Midodrine really helped push me from semi-functional to almost fully-functional. But the real recovery for me was patience, hydration, pregnancy, and learning to change positions very slowly, not to lay down for long periods of time, and to walk as much as I could to preserve leg muscle tone. Good luck with your struggles. Please let your daughter know that recovery IS possible. We all felt hopeless at some point--I think--and it nevery really is hopeless.
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