Sophia3

Yes, I came across that article the other night, then my computer crashed and burned, and needed to be reformatted. I lost many bookmarks and Chris site IS terrific....been changed many times over the years but still great. Thanks for posting it here.

Wow! Long but informative post and thanks for the breaks in spaces. Well, I must say, I had NO idea one could GO on immune suppressing drugs and then wean off fo them. If indeed that is the case, and your upcoming treatment would not HAVE to be permanent, then I guess I might understand your trying it. I am still trying to figure out if your past docs were the second opinion many recommended (sorry my brain is really tough at comprehending info these days!) But if I remember correctly, weren't you in the hospital for a really long time with horribe bizarre reactions? so having not walked in your moccasins, it's easy for me to say what I would do. That said, I think your decision to try this--and that you have FAITH in this doctor--is worth trying. I had fears if it didn't work, there was no 'going back' so to speak. So if you have really researched this and I am guessing you have, as somebody just lurking on theese boards on occassion, I firmly support your plan. I hope it works and works quickly to relieve you of some of the terrible things your body has been through. Good luck to you and I am sorry if my former response to the immune suppressing meds sounded harsh, but I just saw what it did to my late brotherinLaw after a heart transplant. So we can only go by what we are familiar with. Best to you and I will look forward to updates from you. Sophia

Jan, This is such a pet peeve of mine! I think it's been brought up on at least one occassion...I know I have mentioned it elsewhere and have had to tell some email buddies to do the same thing in email. My eyes and brains ability to process are greatly affected. Also, I would like to add for folks to NOT use ALL CAPS!! this is very tough to read as well and almost makes me feel dyslexic. if one is too busy to use the shift key...using all lower caps is still easier to read imo. the capital letter adds to the cluttered look and cramped look. go post about this on every message board you frequent jan and get the word out! LOL I post on a message board with one of the most confusig quotes button I have ever seen. Folks have learned how to quote one or two sentences by say, 3-6 posters and include it in their replies. I am still asking for lessons on the site on how to do stuff!! But thanks for the Public Service Announcement thread Jan.

Sorry I do not know your history but that you have indeed has lots of struggles. I am surprised you are being rushed into such a LIFE ALTERING decision. I must agree with Jan on this one and yes, please seek a second opinion, or even a third if you are a complex case...and arm yourself with all you can find on this. My late brother in law had a heart transplant and was on many many POTENT drugs to keep him alive for an additional 8 years. He didn't have rejection of the heart though a few bad biopsies that had to be remidied. but the drugs he was on --in his case, not sure the specificities of yours--were endless in their hairraising side effects. He was a doctor/surgeon but sometimes had to take himself off the meds..some caused horrible painful muscle spasm and had in in agony...others he could never sleep, etc. If I remember correctly, weren't you hospitalized a few weeks ago and put on a boat load of meds? with your ADDISON's, can you seek out a second opinion of an endocrinologist and fill him in on your history. I know Addison's is nothing to mess around with either so your decision does indeed put you a risk to protect YOUR BEST INTErEST. I would hate to see you jump into such a MAJOR LIFE CHANGE and frankly, please do not let the doctor rush this. even though you feel badly, you need time to think clearly, take a deep breath and study your options. If you truly HAVE TO GO THIS WAY in order to live, then it's a no brainer but please, explore your options and do not let anybody rush you. You deserve the best you can be with your kids and husband. And that means time tto make the correct decision. That way, whatever path you have chosen, you can do it w/o second thoughts of regret. Once the toothpaste is out of the tube- with immunosuppresent drugs, there is no turning back. Though I know there are higher and lower degrees of potency and my brother in law was on major doses having a new heart. Please be good to youself and ask for an extension of time. It is your life to choose and don't let your doctor pressure you. Good luck and please let us know what you decide to to. Best to you. Sophia

Jan Sending, thoughts, prayers and positive energy to you and your loved ones today and tonight.

Jan I will be praying for Jeff and you. Sophia

Morgan, A thump on the head to the PT for not thinking to have you lying down the first time, BUT snaps to him for BEING INTERESTED IN LEARNING about POTS and OI. I am glad you didn't faint. It's the little things, you know. xoxo Sophia

Morgan That so stinks you had such a bad reaction to PT. Did they have you lying down flat on side head down, or with head propped up? Did you have leg weights? If so, I would skip them next time. You have had SO MUCH going on physically and emotionally with you in recent weeks, I hope you get a break soon. and I know you have to be running out of patience and at times, hope. This illness is so frustrating for those of us that CAN'T 'always push' to be normal. No matter how strong our spirit, we JUST CAN'T do things. But you are attempting PT and that is a start. It would be intersting to see your BP and HR while exercising. And I also know sometimes even those that are debilitated can "push" and other days, cannot. It would be nice to not have so much on your mind emotionally and do try PT on your own in safe environment. I started leg lifts in bed a couple weeks ago and have graduated to the floor and ankle weights. But I take my time and rest in between and can now do three sets. I hope they gave you stuff to try in bed. You'd be SURPRISED what can be done in one's bed. EXERCISING I mean, lol.. I thought I had seen MAJOR improvement in the CoQ10 but it turned out, it was just a good week (for ME anyway!) so it's tough to see what's our trigger, what's our final straw, etc. Sounds like the weenie leg lifts may have been your last straw. Just distract yourself as much as possible until you get the final results from the Texas tests. And I hope your doctor visit next week can address SOMETHING to help you feel better. You be kind to yourself in the next few days, Morgan and I am thinking of you and yours. xoxo Sophia P.S. Found this link on exercise and fainting and other faints. I realize many of us here may know this but it may be a good refresher read or helpful to newbies. http://www.merck.com/mmhe/sec03/ch023/ch023b.html Not helpful to you Morgan, being the savvy nurse person you are, but I wanted to post SOMETHING to help and I can't email brownies.

Kristen Don't know if this is the list of doctor phrases that was sent or not but I posted this on another site 3 weeks ago but it is a few years old. Been around in email a few times but I still think it's a hoot. She may have sent a different one. What doctors SAY, and what they're really THINKING: ) "This should be taken care of right away." (I'd planned a trip to Hawaii next month but this is so easy and profitable that I want to fix it before it cures itself.) "Welllllll, what have we here...?" (He has no idea and is hoping you'll give him a clue.) "Let me check your medical history." ( I want to see if you've paid your last bill before spending any more time with you. ) "Why don't we make another appointment later in the week." (I'm playing golf this afternoon, and this a waste of time. --or-- I need the bucks, so I'm charging you for another office visit.) "We have some good news and some bad news." (The good news is, I'm going to buy that new BMW. The bad news is, you're going to pay for it.) "Let's see how it develops." (Maybe in a few days it will grow into something that can be cured.) "Let me schedule you for some tests." (I have a forty percent interest in the lab.) "I'd like to have my associate look at you." (He's going through a messy divorce and owes me a bundle) "I'd like to prescribe a new drug." (I'm writing a paper and would like to use you for a guinea pig. ) "If it doesn't clear up in a week, give me a call." (I don't know what it is. Maybe it will go away by itself.) "That's quite a nasty looking wound." (I think I'm going to throw up.) "This may smart a little." (Last week two patients bit off their tongues.( "Well, we're not feeling so well today, are we...?" (I'm stalling for time. Who are you and why are you here? ) "This should fix you up." (The drug company slipped me some big bucks to prescribe this stuff.) "Everything seems to be normal." (Rats! I guess I can't buy that new beach condo after all.) "I'd like to run some more tests." (I can't figure out what's wrong. Maybe the kid in the lab can solve this one.) "Do you suppose all this stress could be affecting your nerves?" (You're crazier than outhouse rat. Now, if I can only find a shrink who'll split fees with me ...) "There is a lot of that going around." (Good grief, that's the third one this week. I'd better learn something about this.) "If those symptoms persist, call for an appointment." (I've never heard of anything so disgusting. Sure glad I'm off next week.)

Bamagirl I know your feelings of despair myself and have been semi house/bed bound for years and hve worsened sinc going on disability in 1990. Like Morgan, I would STRONGLY SUGGEST counseling. It won't help your illness but it will help your coping skills and it sounds like you are DEFINITELY at your wits end. . i find this holiday the most depressing one of my life, and if it wasn't for having to talk to myself and change the thought patterns between my ears, I would be despondent constantly. My therapist is there if I need her. Please be kind to youself and know that even though some of us never get better, there are ways to learn to cope. I hope you find a good therapist as that is key. Sophia

Nina Insomnia and fatigue were my first symptom in the late 80's and continue to be my worst. I have been awake almost 48 hrs straight. Usually Klonopin helps but when PMS or on period it does not work or I sleep for a few hours and sleep fitfully. I have alpha delta sleep problems (aka alpha intrusion) and saw a sleep specialist for years witih no relief. We DO know that folks who CAN NAP (that is fall asleep ON THEIR OWN for the most part) can feel better. I know you don't want to screw up your ability to sleep all night but a 20 minute nap in the middle of the day can help 'some folks'. Also my sleep doc said Benadryl screws up the sleep cycle and can make people feel worse. It never worked for me. BUT if I get no restorative sleep, or very little, how do we know that meds might not help anybody to sleep better! even if the 'sleep experts say otherwise'. In other words, if some meds mess with our sleep cycles but many of us have MESSED up sleep "naturally"...who's to say 'bad meds' may help some folks sleep better? I say whatever works. I am always hung over whether I sleep on meds or occassinaly crash w/o it...it's bad of my sleep disorder. I could never nap before the insomniathing happened but I LOVED THE NIGHT TIME ROUTINE of days gone by when I was 'more normal'...watching tv...watching Carson's monologue and either reading (used to help a lot now just winds me up, even if reading something light) and then I would get that wonderful 'warm, fuzzy sleepy feeling". As far as your description of Valerian, good, FRESH Valerian smells like manure!! I got some about 12 years ago at a health food store. They had herbs in bulk..I remember getting spearmint, Valerian and something else. I drove 5 minutes to a friends house and my car stank. I PUT the valerian in a glass jar with a lid. I made some tea that night (NASTY but drinkable, held my nose to sip it!) Didn't help. Oh, and the whole downstairs smelled like "pig farm" for a few days, EVEN in the cabinet and in a glass jar!. My doc said THAT's when you know Valerian is fresh, when it TRULY STINKS! lol Elavil and Klonopin helped in the early years as I read in the CFIDS chronicle in 1990 that Klonopin put you to sleep and the elavil kept you there? Or maybe it was Sinequan but I did low dose elavil. I later found out elevil could add to daytime groggienss and after ANS dx in 1998, got off of it. Tried Trazodone but didn't help. I bet you must be in semi crash mode from recovering from your lung problem Nina. I think if the body is working on healing it's also fatiguing yet can cause insomnia...if that makes sense. a couple weeks ago I was awake until 7:30AM. I hadn't pulled an all nighter of insomnia in years. I do know perimenopause messes with many of us. Sorry to prattle on but hope you got some sleep.

Morgan OMG, at least they found reasons for your having so much pain and that can WEAR DOWN the FATIGUE factor! ...and the idiot wondered where the thoracic xrays are. Sheesh. I hope you can get some relief from the mulititudes of back stuff you have going on. And, Morgan, i can't hardly bear to think of what YOU must be going through with your little dog. My cats are 'my kids' and I have had a few over the last 20 years and lost some to kidney disease, stroke and cancer. It always STINKS but then they are taken in their youth. . . . Yes, the waiting and wondering and worrying over tests; and looking into those little trusting eyes of our pets, is heartbreaking...yet having them suffer is worse. I have been there with losing a few loving cats, way too young to 'go Over the Rainbow to see Dorothy and Toto '(the way a local radio friend describes passing away! He is in his 60's and seeing many friends pass away and lost his older cat Louis last winter) But he never mentioned the loss of the cat on the radio...too painful for him. So pets have very SPECIAL places in our lives, for sure. All our circumstances are different. But when most of us adopt animals from shelters, we dont' know their history and at least we give them some fun, great times and LOTS of love while we have them. And they can be the light of our lives, and comfort us 24/7. Many animals never get that chance at all! My heart, thoughts and prayers go out to you and your little baby. Take care. Sophia

Hi Morgan, I am glad you made it thru the MRI. I can ONLY imagine your claustrophobia as I have only had two open MRI but when the big flat part is pushed within 7 inches of my nose and the noise starts. I think the noise sometimes gets to me and I wonder if it's louder for you in an enclosed one. I look foward to hearing your results. Hopefully it will give some clues and be interpreted properly.

Wow! A collapsed lung, what a drag. Get well soon.

Julie I forgot about your diverticulitis!! Ouch that is a problem to keep well by itself with diet, at times. Good luck and I hope you can see a doc as opposed to the dreaded ER! Morgan, Good point about why do they ignore the parameters??? Or as some of us find out, the labs are off so we run them again in a couple of weeks and they are 'more normal'. Well, WHY WERE THEY OFF BEFORE? At least my endocrinologists knows things CAN INDEED fluctuate all over the place. For instance all hormones, thyroid--can be intermittently spurting but you dont always "catch it" in the act. Or cortisol levels are low normal, normal, or high normal, depending on how long I had to wait in the room before having blood drawn at hospital. The longer I was forced to sit and become symptomatic, the higher the cortisol. Also my palms have subtle tan lines (big tip of Addisons or low adrenal output or other glands) though tests are always close to very normal. Still, he thinks the adrenals can malfunction as well but I have no back or flank pain or numbers high enough to call for scan of adrenals/kidneys. This doc also goes by "clinical symptoms" w/o relying 100% on the 'lab tests' because what's normal for the labs isn't always normal for our bodies. So that's helpful to have a doctor that believes this way because I understand it is very odd to have a doctor so open minded. He is due to retire in a few years and I will have to do another letter writing campaign to find somebody close to his care and knowledge....

Morgan A couple years ago when my ANS/endo doc dx me with BPPV via exercise of hanging head over table and helping me sit up quickly to induce spinning, motion sickness-I am on amusement park or boat sensation, he mentioned Valium is the number one treatment not only for Menieres' but I THOUGHT he said for BPPV as well. He knew I have handled low doses of xanax just fine for years and I said it seemed to help with my intermittent vertigo..though I have that subtle motion sickness thing lurking all the time. I could NEVER mention those antinausea meds. Besides UNBEARABLE cotton mouth it's all the other ANS off-feeling I could not bear. I just have a fraction of what you live with but know many others have griped about the slanted room feeling..like dizzieness or vertigo. I often get hit lying in bed and before doing the BPPV exercises I started last year, I would turn over in bed in the morning and trigger an entire event. So I found this article interesting and have had it bookmarked forever. Recent spells made me decide to post it to help others who sometimes don't know which is first, the chicken or the egg..ANS causing vertigo/dizzieness or vice versa. And do I FEEL dizzy or do I feel like the room is spinning. Morgan, I often get the sensation 'my bed is moving a bit' and my head feels like I am on a roller coaster. Is that mild vertigo or dizziness? I know when the room looks distorted and I feel like I am on a sloping boat, that is vertigo. But that subtle sensation, I have attributed to vertigo due to the 'rocks in my head' (calcium deposits) in middle ear. Though my doc LOVES saying "you have ROCKS IN YOUR HEAD". How many times would a doc LOVE to say that, lol! Though the calcium deposits explains MY triggers of rolling over in bed that triggers tachy but then, where does POTS end and the inner ear deal begin??

For those who suffere lots of constant motion sickness feelings or what I call perpetual morning sickness (though I was never pregnant!) or dizzieness, or evey experienced that feeling where the floor under you is diagonal and the room is spinning, an interesting article. Many with POTS have these feelings and it was interesting to read about how this hits in our sleep though i guess I should've known that since the brain is always working...but I wonder if this is part of my alpha delta sleep disturbances? Can't remember if I posted it here but it's on a couple other sites I visited. http://www.opt.pacificu.edu/ce/catalog/COPE7282/Dizzy.html ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Although there are many causes of dizziness, five major categories will be reviewed: sensory conflicts, psychological problems, blood flow disorders, pharmaceutical effects, and systemic disease (including aging). Of these causes, sensory conflicts will be discussed in greatest detail because they are most closely related to problems involving the visual system. Sensory Conflicts Sensory conflicts often produce dizziness, typically with a major vertigo component. Under normal circumstances, the brain compares inputs from all of its sensory systems to determine posture, position in space, and body movement. When the information from all of the systems agrees, there is no problem. But, when disagreement is noted, problems begin. Even in normal patients, these sensory disagreements can occur when riding in the back seat of a car or in an airplane.(24) This is because the vestibular system detects motion/acceleration, but the visual system sees only the inside of the vehicle which remains fixed in space with respect to the observer. Another example is viewing a wide screen movie in which the audience vicariously experiences flying a jet fighter. The visual system reports motion, but the vestibular apparatus does not. For example, in an airplane your vestibular and muscle senses might tell you that you are going up and down, tipping over, hitting severe turbulence, about to crash, etc., but your visual system says that the walls of the airplane (which are really closing in on you) are not moving and neither is the seat in front of you (about 6 inches in front of you these days). This sets up a conflict which can result in dizziness, motion sickness, vertigo, panic, and other wonderful sensations. In an aircraft, we understand why these sensations occur, but for some patients, the sensations occur either continuously or episodically without an external cause. Because they typically involve visual system information as part of the conflict (even though vision might be contributing normal information), these conditions are of interest to you as a vision care specialist. In addition you will need to know how to prescribe lenses for these patients and make appropriate referrals. A side-effect of this sensory conflict is an excessive response by the autonomic nervous system. This causes the sweating, pallor, nausea, and vomiting experienced by patients with vertigo.(13,25) Dimenhydrinate (Dramamine?) and a number of other prescription and non-prescription antihistamines can control some of these symptoms, presumably by suppressing vestibular output and reducing the amount of conflicting information the brain must process.(26-28) When vertigo is not associated with actual movement, peripheral sense organ problems account for about 85% of the cases, whereas central processing disorders account for only 15%.(29) (Central disorders refer to problems in the cerebellum, brain stem, or projections to parts of the cerebral cortex, especially the temporal lobe. Peripheral disorders refer to problems occurring at the end organs or in the peripheral nerves.(16)) Sleep Disturbances Many dizzy patients report sleep disturbances such as restlessness, or frequent awakening. These symptoms do not seem related to dizziness until we understand that if vestibular problems are causing problems for the awake patient, these same "bogus" vestibular conflict signals are telling the sleeping patient that he or she is moving. This information can break through to a high enough mental level that it awakens the brain to deal with the "earthquake."

Julia Feel better soon. But I had to smile because when I was in school, George was what we girls called our periods!! So I was somewhat confused at your title on your thread, lol.

Miriam I am sorry for the loss of your sister...I can NOT imagine the devastation and the sudden loss you must be feeling..and the other family dynamics must be messing with your POTS symptoms something fierce. Be kind to yourself in the next few days and I hope you get the support you need during this painful time. S

Great balls of Fire morgan...I hope you get some answers SOON after the scan. And good luck during the scan!! Don't forget to breathe and load up on needed meds for claustrophobia and noise. Both can be rough and I know you can't be looking forward to it. Sophia

I got Soc Sec first time on myown. In 1990 it was chronic fatigue syndrome. The NAME of the illness doesn't get you disability. Medical documentations of your limitations does. They don't want to know the name of your illness, they want to know WHAT you cannot do.

Ug, I feel what you are saying about elevators...they can make me very ill and I will tackle stairs first and take my time! the motion sickness or inner ear thing can so be triggered by elevators..especially if they have a shimmy to their cable..instant nausea! somebody told me the NASA bouncing chairs are ONLY $400! So I am going to borrow a mini rebounder for a week instead and see if I can tolerate it. Supposed to help "retrain the ANS". I just need to hold onto something to steady me as I use it!! LOL

http://kronisktraethedssyndrom.dk/cheneyII3.pdf On page 39 I think, dr. Cheney mentions the chair used by NASA but NOT THE PRICE...I am sure it is pricey. But this isn't the article I read earlier but they ALL SAY THE SAME! NOW I must find an affordable rebounder tramp to hold onto a bar or chair as I use it. It's low energy output but GREAT for the brain and ANS. I posted it here because I didn't want to hijack your thread. Dr/ Cheney also mentions peeing our brains out that lowers our blood volume!! This is a long article and I will read it tomorrow. Great stuff in it!

Fin, I am way too tired and POTS brain fogged to understand the patent site. BUT how can somebody get a patent on Dx with Vanderbilt has been doing this for years along with NASA? And the Mayo clinic, NIH and Cleveland Clinic? i believe your findings but it is odd. also I read somewhere today about something posted on NDRF years ago. Remember how little kids used to be (maybe still are) used to be put in these little jumper seats before they could walk? somebody invented a giant one for adults to use to help with autonomic problems and 'rebounding'. for folks who didn't have bad balance problems, little rebounding trampolines are said to be very good for helping get the ANS back in shape. But do you think I can find the article I read earlier...I thought I bookmarked it but did not! Did you come across such info? I remember years ago we all laughed and laughed when some older woman mentioned it to help her little girl and she thought an "adult jumper seat" might be good for us... with ANS. Well, egg on our faces, ADULTS do it in NASA studies often. Now if I thought it would work, I would invest in a rebounder as we have a tiny room we are turning into a gym and I could easily put a bar on the wall to hold onto while jumping. Anybody here about this? Sorry to hijack your thread Fin but I am wondering, if they are patenting dx, has anybody patented treatment like the adult rebounding chair, attached to giant bungee cords??? It sounds like something that may make me motion sick so i am not sure what to think. Sorry if I am rambling but maybe I will edit this tomorrow. I am PMS all over the place with estrogen brain fog and OI, too.

Thanks, gayle and others, but OBVIOUSLY many missed the Brain Fog BLUNDERS I posted about, clearly, in the title. Michelle, it wasn't about a 'cute' story but how we can do stupid, and often frightening blunders due to short attention spans. Many were enjoying the post and COULD RELATE to the brain fog/OI- aka Cognitive impairment connection. that's all. I didn't post it to be cute, just to show how embarrassing this could be from a person in my pre-POTS life, FAMOUS for my great cooking and creative ways in the kitchen. Many others had similar stories but now are hesitant to post. The cake was just a 'lighter topic' though often, my cognition skills can provoke tears of frustration. And I know MANY WITH POTS can relate to that subject, or so, I wrongly thought. Most of us now get that sadder stories are more welcome here. I just think it is helpful to 'lighten things up' once in a while with an INVISIBLE CHRONIC illness, but I totally understand that is not allowed. Don't worry, I shall not post such topics again. Even though others are still emailing me with similar stories...I get that such stuff in your view as moderator was considered off topic, though I respectfully disagree. But it is your site so you do have the final answer. I get that now. Peace Sophia