Jump to content

Shiner Kitty

  • Posts

  • Joined

  • Last visited

Everything posted by Shiner Kitty

  1. Yes, I often feel worse after having blood drawn (many of us with POTS do). I try to avoid blood tests unless they're absolutely necessary. I had five tubes drawn this morning, and I feel very weak, dizzy, and extremely fatigued. I feel very bad every day, but I'm definitely worse now. It's good that she didn't draw more tubes today. I waited several weeks to have it done because I've been so sick, but I couldn't put it off any longer. I've been feeling worse by the hour, even though I've been resting all day, eating well, getting plenty of salt, and drinking a lot of fluids. I hope you feel better soon!
  2. The link won't work for me today either. It worked yesterday. There must be something wrong with the website. You can try this link http://lib.bioinfo.pl/ or try searching Google for BioInfoBank Library. I hope that helps.
  3. This is a database with extensive research papers on various medical conditions, including POTS, PAF, OI, Fibromyalgia, CFS, etc. You can research other types of topics too. Put your search terms in at the upper left corner. If you want to clear the colored keywords for easier reading after you perform your search, click "Clear" next to "Search". I put 2011 in before the search terms to find current POTS research, so you may want to try putting different years in. http://lib.bioinfo.p...cardia+syndrome "This site is aimed at supporting and promoting the scientific activity of students and scientists. The site facilitates fast publication of research results through short and concise reports, exchange of ideas and comments through dedicated forums and blogs and provides space to place structured resumes. The site also offers useful search capabilities such as the selection of similar papers to a group of papers." *Note: If the link above doesn't work for you, you can try this link http://lib.bioinfo.pl/ or try searching Google for BioInfoBank library.
  4. Article: Neurohumoral and Hemodynamic Profile in POTS and Chronic Fatigue Syndrome (Source: Clinical Science, Sept. 12, 2011 by Luis E Okamoto, Italo Biaggioni, et al.) http://www.prohealth...cfm?libid=16515
  5. Conclusions:Sympathetic hyperactivity based on decreased parasympathetic activity is associated with mental fatigue induced by prolonged cognitive load. http://www.behaviora...7/1/17/abstract
  6. I really wish I would have seen this before today. I'm sure more people would have been able to vote if they'd had a chance. I wouldn't even have known about it if I hadn't received an e-mail from the CFIDS Association. After I voted for that, I searched for DINET. Maybe DINET will get the money next year.
  7. I don't know if DINET meets all of the qualifications to win the money from Chase Giving Community, but DINET is listed. The 1st round of voting ends today. You can vote by following these step-by-step Instructions: From your Facebook page, go to Chase Giving Community: http://www.facebook....CommunityGiving "Like" the Chase Giving Community by clicking on the "Like" button. Then go to http://apps.facebook...?src=vote_share or "search" for "DINET." Cast your vote by clicking the "Vote Now!" button. (You have to "allow" Chase Giving to access your account info in order for your vote to count.) Search other eligible organizations for whom you want to vote, up to 10 per Facebook account.
  8. Many of us are also diagnosed with Chronic Fatigue Syndrome. Please help support CFIDS Association in the Chase Giving Community by following the instructions below. The CFIDS Association is funding research to learn more about the causes, how to better diagnose, and how to treat Chronic Fatigue Syndrome. This is one step in the right direction to help Chronic Fatigue Syndrome patients get our lives back and YOU can help. The first round ends on May 4th. Sorry for the late notice. I just found out about this today. STEP-BY-STEP Instructions: From your Facebook page, go to Chase Giving Community: http://www.facebook.com/ChaseCommunityGiving "Like" the Chase Giving Community by clicking on the "Like" button. Now go to the CFIDS Association's Chase Giving page at http://bit.ly/eKvtwh or "search" for "CFIDS Association." Cast your vote by clicking the "Vote Now!" button. (You have to "allow" Chase Giving to access your account info in order for your vote to count.) Search other eligible organizations for whom you want to vote, up to 10 per Facebook account.
  9. Chrissy, here are some other links with information for you to consider in addition to your low Dopamine levels, Cushings, and PCOS: Low Iron and Low Ferritin can cause Tardive Dyskinesia: http://www.cmdg.org/...ive/tardive.htm. Diagnostic Tests for Tardive Dyskinesia and conditions with similar symptoms: http://www.tardivedy....com/diagnosis/ http://www.virtualme...dive-Dyskinesia http://psych.med.nyu...nesia#diagnosis Tardive Dyskinesia can occur after stopping the medication: http://www.medicalne...hp?newsid=13702 Tardive Dyskinesia after stopping Reglan: http://www.tardivedy...sia.com/reglan/ . . Movement Disorders and Low Estrogen: http://journals.lww....isorders.3.aspx . Movement Disorders and Dykinesias related to Endocrine Problems: http://www.wemove.or...opic/9/143.html . Fluoroquinolones (antibiotics, such as Ciprofloxacin) may cause movement disorders and other serious problems: http://www.fqresearch.org/cns_35.htm and http://www.medicatio...ics_052205.html . Also, vitamin deficiencies can be related to movement disorders: Vitamin D, Vitamin B-12. Vitamin B-6 may help symptoms of Tardive Dyskinesia and other movement disorders: http://www.mayoclini...ECTION=evidence Vitamin E may treat Tardive Dyskinesia: http://www.highbeam....1-12268403.html . Ampicillin may help Dystonia: http://www.scienceda...00310162827.htm . http://emedicine.med...51826-treatment As I said before, I have several movement disorders. One Dr. even wrote Dystonia in my file, although another Dr. called it Myoclonic Jerks. I've had low Vitamin B-12, low Vitamin D, low Potassium at times, low DHEA, high Cortisol at times, Estrogen Deficiency (Premature Ovarian Failure and Early Menopause), low Testosterone, and Thyroid Problems (Thyroiditis and Hypothyroidism). I've also taken a lot of medications that can cause Tardive Dyskinesia/Movement Disoders. I have also taken Cipro several times because I'm allergic to many antibiotics. I don't know what antibiotics were prescribed to treat your MRSA infection. Like you, I'm a very complicated case with an extensive list of problems that doctors really have no idea how to treat. I've had to do my own research to try to figure out my symptoms and diagnoses for the last 17 years, and I've gotten progressively worse. The more I research, the more complicated it all seems really. I didn't know that I had so many conditions that could be contributing to my own movement disorders until I was researching for you. I've had multiple adverse reactions to medications, and I developed severe POTS after a medication built up to toxic levels. It makes it even harder when I can't take many medications due to hypersensitivities and apparent metabolism problems. I truly hope someone will be able to help you! *Note: I had to reinsert all the links in this post because they didn't work the first time. This happened to me before on a post with a lot of links. I have no idea why. They are all working at this time, and I hope they stay that way! I also added one more link at the end.
  10. I'm so sorry you're having to deal with all of this! I really hope you don't have Tardive Dyskinesia, but this says that you can develop Tardive Dyskinesia after stopping medications: http://www.wemove.or...uroleptics.html Also, if you do a search, you will find lawsuits about Reglan having a black box warning and causing Tardive Dyskinesia: http://www.thelyonfi...ack-box-warning . I also have POTS, Chronic Fatigue Syndrome, Fibromyalgia, and a long list of other diagnoses. I have a lot of muscle twitching, tremors, and jerking, although mine isn't the same as yours. I've been diagnosed with Restless Legs Syndrome (it can affect the arms and the torso too), Periodic Limb Movements, and Myoclonic Jerks. They're common with Fibromyalgia. I wish I could come up with some ideas regarding your endocrine problems/hormonal imbalances, but I'm having a hard time concentrating. I hope you're able to find a doctor who will be able to help you!
  11. I deleted this reply because all of the links in my original reply are working now. It was very strange. When I reposted them in this post, 4 of the links worked. Then only 2 of them worked later, but no matter what I did none would work in my original one. Anyway, whatever I was doing wrong or whatever the computer glitch was is hopefully fixed, so you can open them now.
  12. Hi, I'm so sorry you're so sick, and I hope you'll get better very soon! I also have a very complicated case of POTS with an extensive list of neurological problems and other diagnoses. I've had to research my conditions for years too, and there have been many times when I thought I was going to die. I hope the information that I found will help you. I couldn't find any articles that said that MSA or PAF cause Tachycardia either. I've been very sick today, so I didn't have a chance to search for Progressive POTS or Pandysautonomia. I also had to try to retype everything because I somehow deleted everything when I was finished due to brainfog, so I hope I won't leave anything out that I had in my original reply. After searching for MSA and PAF articles, I took a different approach. I really thought that many of your symptoms could be caused by the severely low sodium (Hyponatremia). Surges of norepinephrine and epinephrine may cause sodium excretion. Hyponatremia can also cause convulsions, syncope, tachycardia, slurred speech, depressed reflexes, hypovolemia (Hypovolemic Hyponatremia), etc. It is also often seen in Central Nervous System Disorders. It can cause gastroparesis: p. 4, Case 1: http://www.ucsfcme.c...drenalCases.pdf . Here are some other websites that I found with information that may be helpful, including a lot of other symptoms of Hyponatremia and its causes, Hypovolemia in POTS, and a patient with Dysautonomia, EDS, Mitochondrial Disease, Hyponatremia, etc.: http://en.diagnosisp.../15161-104.html http://www.ncbi.nlm....pubmed/14764318 http://circ.ahajourn...ull/111/13/1574 http://www.bioline.o...request?pe07013 http://emedicine.med...767624-overview http://www.medscape....rticle/481392_4 (You have to create a free account to view this article.) http://www.samsca.co...-prognosis.aspx http://www.inspire.c...ean-off-of-tpn/ * All of the links above should be working now.
  13. Diagnosing Autonomic Nervous System Disorders – Existing Guidelines and Future Perspectives Hilz Max, Lahrmann Heinz, Rocha Isabel, Struhal Walter, Thijs Roland D European Neurological Review, 2011;6(1):52–6 Published: March 2011 http://www.touchneurology.com/articles/diagnosing-autonomic-nervous-system-disorders-existing-guidelines-and-future-perspectives?page=0%2C2
  14. Dr. Peter Rowe of Johns Hopkins discusses Orthostatic Intolerance (POTS and NMH) in this archived CFIDS Association Webinar from September 1, 2010 that is one hour and thirty-five minutes long. I've been pausing it and going back to watch more of it later, because I can't sit through such a long video. There are also links to other archived and future Webinars discussing Chronic Fatigue Syndrome, Fibromyalgia, etc. that are also listed if you also have those conditions like I do. If you've already been diagnosed with Dysautonomia and researching for years, there may not be a lot of new information for you. Here's the caption under the YouTube video: "In this Sept. 1, 2010 webinar, Peter Rowe, MD, of Johns Hopkins University School of Medicine describes orthostatic intolerance (OI) and approaches to its treatment in chronic fatigue syndrome (CFS). He explains the different forms of OI, including neurally mediated hypotension (NMH) and postural orthostatic tachycardia syndrome (POTS) and other names used to describe these conditions. Dr. Rowe covers overlapping and co-existing conditions including joint hypermobility, Ehlers Danlos Syndrome (EDS), migraine, allergy, pelvic congestion syndrome. He reviews medications used to treat OI as well as postural and dietary approaches to comprehensive care." You can find the Webinars here: http://www.cfids.org...es2010-past.asp
  15. My serum phosphorus level has been low several times since I became ill with Dysautonomia/POTS 14 years ago . It's never been high. As far as I know, my serum calcium has been in the normal range, but it hasn't been checked for a couple of years. I just found out this month that my Vitamin D, 25 Hydroxy is low (only 12.4 ng/mL). I also have low Vitamin B12, and my potassium is often low.
  16. Beta-blockers made my allergies and breathing problems much worse. They made a long list of my other symptoms worse too, and they didn't control my heartrate and blood pressure. When I was taking metoprolol, my electrophysiologist just kept telling me that my allergies and breathing problems would get better once ragweed season was over (they didn't). I kept telling him I had severe year-round allergies, and that I'd never been that bad before. I knew it was the metoprolol, but he wouldn't listen to me.
  17. I had normal brain MRIs in 1994 and in approximately 1998 (that one may have shown a sinus infection, but I don't have that report). An MRI with Gadolinium Contrast using a pituitary protocol in January 2001 showed mild sinus disease, and the report said the odontoid configuration was slightly unusual on the sagittal image (probably an incidental finding). I had an abnormal MRI of the brain in January 2005 (without contrast) which showed dorsal angulation of the odontoid with respect to the proximal cervical cord, and it showed non-specific periventricular deep white matter tract abnormalities/lesions adjacent to the occipital horns of the lateral ventricles (findings most pronounced on the left). The MRI report states that they could be caused by small vessel disease caused by microangiopathy or a possible demyelinating disorder. My doctors say they could be caused by brain shearing from when my car was rear-ended in 2002, my severe migraines, or multiple sclerosis (or other demyelinating disorder). Unlike Maxine, I've had severe migraines for several years, so mine actually could be caused by migraines.
  18. Yes, Effexor can cause the symptoms you're having. I'm not a doctor, but I found these websites for you (some say to contact your doctor immediately with chest pain, etc.): http://www.mayoclinic.com/health/drug-information/DR202764 http://www.drugs.com/cons/effexor.html http://www.nlm.nih.gov/medlineplus/druginf...er/a694020.html http://www.medicinenet.com/venlafaxine-oral/article.htm http://www.walgreens.com/library/finddrug/...or&id=11641 I had written a longer reply, but I think I must have hit a button by mistake, so I lost it. There are many other websites that also list your symptoms as side effects. I hope the above websites will help you to get your doctors to take your concerns seriously, especially since you only started taking the Effexor and Calcium a few days ago and now have severe symptoms. Now you can call them and tell them that you have information saying that Effexor can cause your symptoms. I've had so many rare side effects to so many medications, and so many doctors also told me the medications couldn't be causing them. They were all wrong! One doctor even got mad when I showed him that my symptoms were listed in the PDR. He claimed that was in less than 1% of the people taking the medications. Well, I was in that less than 1%, and I was having problems with the medications. I am very hypersensitive to multiple medications. It could be the Effexor, and it could also be from the calcium supplement (less likely than the Effexor, I think?). Some people have gotten chest pains and other symptoms from taking too much calcium. Did they check you for an electrolyte imbalance? You've only been on the medication for a few days, but you shouldn't stop the Effexor without medical advice to be safe, because it's one of the medications that needs to be tapered. Anyway, I hope you will get this sorted out and feel better very soon! I'll be thinking of you.
  19. I've had problems with hypoglycemia for years. Last year my fasting glucose level was high, though- 112 (I think). My doctor thought I was prediabetic, but when it was tested this year, it was normal- 98. I haven't ever had a glucose tolerance test. I thought you also might want to know that many medications can cause glucose intolerance, including beta blockers, corticosteroids, oral contraceptives, etc.: http://www.nlm.nih.gov/medlineplus/ency/article/003466.htm . I can imagine that you must have been feeling really bad during your test.
  20. Sometimes I get extremely cold with goosebumps when eating, but I get overheated and very symptomatic when eating more often. I get the chills and hotflashes very frequently at other times too. The chills and goosebumps happened when I ate a few hours ago, and I still feel cold yet hot at the same time with a cold sweat. I have the hot and cold at the same time feeling a lot. That's very strange, and it can be hard to explain.
  21. I posted about the risks of butterbur on the Chit-Chat Forum when someone asked about it a few months ago. My neurologist recommended it to me for my migraines. He claimed that the only side effect that he knew of was burping, and he even gave me a brochure that claimed it had no side effects. I'm very hypersensitive to multiple medications, so I did my own research. I found information about risks and side effects at http://www.mayoclinic.com/health/butterbur/AA00066 . I didn't take it because you're not supposed to take it if you're allergic to ragweed, daisies, marigolds, or chrysanthemums, and I'm severely allergic to ragweed. It also says there is an increased risk of liver and kidney damage with long-term use, although some butterbur products are processed to reduce the amount of these toxins. Also, the toxic chemicals in butterbur may have cancer-causing effects. I'm glad it's working for you. If you take it long-term, maybe your doctor could monitor you liver and kidney functions if he/she thinks it's necessary. I don't know how much of a cancer risk there is, but I did want to mention it since it's on the Mayo Clinic website.
  22. I'm not a doctor but I was prescribed Nortriptyline years ago for pain. It didn't help, but it caused significant side effects. It is actually a tricyclic antidepressant, and it can cause seizures as an adverse reaction. Seizures can also be a sign of overdose, so you should call your doctor and let him/her know about it. It can also lower the seizure threshold in someone with a history of epilepsy. Nortriptyline can also cause tachycardia/heart arrhythmias, and it can affect blood pressure. You can read about some of the side effects: http://www.merck.com/mmpe/lexicomp/nortriptyline.html and http://www.fda.gov/medwaTCH/SAFETY/2005/Ja.../Aventyl_PI.pdf . As the others have said, it's best to get it checked out. Hopefully, you won't have an ongoing problem.
  23. I'm also extremely sensitive to medications. I had this test in my doctor's office about 11 years ago (I also had POTS then). I was also okay during the test.
  24. Hi, I have times where it feels like parts of my body are boiling hot. This has happened off and on for years. Sometimes others can feel the heat coming off these areas too. I've recently been having it feel like it starts in my stomach and spreads out from there. This occurs suddenly when I haven't eaten or drank anything. It's very disturbing. I also have painful cold sensations. I don't have any knowledgeable doctors who can tell me what causes it. I have POTS, Fibromyalgia, Chronic Fatigue Syndrome (CFS/ME), Multiple Chemical Sensitivities, Raynaud's, GERD, Severe Allergies, Dermatographia/Dermographism (Skin Writing), Migraines, etc. I also have had constant electrical shock and burning sensations through my whole body for 5 years. The electrical shock sensations started after someone rear-ended my car again. I also get numbness, pins and needles and shooting pains.
  • Create New...