Sophia3

Emily I didn't know you had started another new med recently. I understand waiting to try the marinol. That THC stuff sure can help nausea and appetite. I got so my long time aid, ginger root tea and capsules were not working. My nephew's wife was just asking me about the Cymbalta. Good luck. I LOVE SNOW as well.

Morgan I ALWAYS wanted curly hair and used to pay the bucks for it but they wouldn't last. You are lucky to have hair that folks comment on if it's natural. Hopeful girl I hope nobody was offended by what I said either. It's like Morgan said, sometimes threads take a life of their own or get hijacked. I think with intimacy problems, many like yourself were just painfully honest with what your current situation was...and like all stress, no doubt affects your illness!! So, I never meant it to be a debate about porn either and should not have pontificated on the subject. Please don't feel bad for sharing your problem about it here...that took a LOT of courage. I hope you find help for yourself. You seem to have a lot on your plate right now.

Nina that hot horseradish..is it PURE horseradish? And, for my jewish friend, is it Kosher AND or Kosher for Passover? If so, could you sell that on your bracelet site, too? LOL. Dang, that must be such a nightmare that sinus thing...I had my first sinus infection about 4 years ago after my FIRST COLD in 20 plus years...ears hurt and sense of smell gone and sinuses on exray were packed in the max ones...I think..the ones on both sides of the nose. BUT since the infection, I often wonder if I don't get mini versions. I have searched the Internet for hot horseradish and haven't trusted the names I find to truly be "hot" version. Many say it but upon taste, are bogus. . If that placed by you is Kosher and does mail order, I know of a few people who may be interested! Especially for the holiday season. My mom makes a kicka** Shrimp cocktail IF she has the proper horsey sauce! Feel better. Hope you get relief soon. Sophia P.S. YIKES! Just checking, it was my maxi sinuses and just read they can cause teeth pain and pain in jaw sending people to the dentist. PUHLEASE! I hate the ENT jerks I went to. I need to try another endeavor to find hot horseradish and then take a shower afterwards...if only we could handle sauna's...i could do a eucalyptus thing and get rid of my recent sinus headache and pressure. I am beginning to think my sinuses headache of the intermittent kind aren't an infection. Nina, is there such a thing as a chronic mild infection? Don't answer until you feel like it. YOu have enough going on but I even slept with my bit splint last night due to multiple tooth aches..I DO grind my teeth so when is it the grinding and when is it the sinuses? Which came first, chicken or the egg...the wind or the sand!?!? I hate idiots who make their PS as long, or longer than the original message.

Hopeful Girl I am sorry you have this MOST difficult situation as it is one of the worst addictions. You know, I don't listen daily as I opposed his political viewpoints, but when Rush Limbaugh came back to work and out of rehab, he mentioned the center where he went treated ALL ADDICTIONS. But sadly, sex addiction is one of the toughest to break. For instance, all had paper work to sign about home work assignment and out patient recovery. Rush said he signed about 5-6 pieces of paper. The sex addicts had like 20 pages. So right there, sex addicts have many more layers to sift thru to deal with their illness. I don't judge if people want to watch sexy movies together. If you feel comfortable in the situation that is fine. BUT I do think there is a difference in the degrees of porn...soft core, hard core, then really sick XXX stuff. Some lump it all together and I don't know what everybody thinks or does. It's really none of my business. But if there is a kid in the house, then I get very concerned. The bottom line, if there is any sneaking, lying or deceit about this, then that is indeed a form of abuse. Abuse doesn't have to by physical, as I think most all know. But the psychological form and the spiritual form, can sometimes be worse than a smack. (I AM AGAINST PHYSICAL VIOLENCE dont get me wrong) But the subtleties and nuances of a relationship that "seems" ok~~ in other areas ~~except this one "secretive fixation", I believe still filters in through other parts of one's life. I call it dancing around the elephant in the room that nobody wants to see is there. But that's just me. There are many things I can forgive in a person..actually anything. But they must do their share of what they say, what they promise, and most of all, the follow through on their actions. I hope you will examine your life and continue to get counseling. Do keep us posted on how you are doing about this situation if and when you feel the need. It was great of so many of you to open up about a dark world that many like to pretend "never happens to nice people". But it can happen to any of us.

Hopeful Girl, Wow, you must feel so betrayed. I totally understand your fear, disappointment as well. But like Morgan said, calm down before firing off a letter. Don't want to burn any bridges but try to get why "his reality" seems to be interpreted in a completely different manner than you expected. I am big on letter writing. BUT!! Do this..what ever you write...edit it..edit it some more. Let the "final draft" sit 24 hours w/o reading it or overnight. Then detect the TONE of the letter. Be firm but polite but ask in a diplomatic way why he worded things as he did. But from what I gather, he does have a lot to answer to but maybe you can at least make peace about the situation and move on. Or fire this guy and move on. But whatever you say in your letter could follow you as well as his notes...Good luck to you. You deserve an answer.

Julie I am sorry you are in such an emotional state. I have lots of neck pain or middle upper back pain as well and sometimes the crepitus noises. I have no words to comfort you EXCEPT to say I would be conservative about another surgery BUT make sure you can get SOME relief of the pain. Tie another knot in the rope and hang in there. Hope you get some answers after all the testing so that is hopeful....easy for me to say.

Nina Hope you feel better soon. I don't know HOW you do all you do. and I don't know how anybody reads all the messages here for moderating. Gosh, I never read all the postings as this place is busy. thanks for the moderating thing you do on TOP of all your other commitments. Good luck with the sinus junk. Hey, can sinuses be drained (which has to be painful) or have you ever read the theory that bacteria doesn't necessarily cause sinuses to become impacted. It can be viral or just bad drainage. I only ask this because you seem to fight the sinus thing so often. I can't imagine ingesting all those antibiotics as I believe they mess with the ANS big time. Double your vitamins!! Hey, I wish they still made REAL HOT HORSERADISH. The heat from horseradish RISES thru the sinuses as opposed to mexican heat that just takes off the top layer of the tongue. Thor used to make a great hot horseradish but it's not around anymore. I asked a Jewish friend over Passover and his 87 year old mom said they don't make HOT version anymore. She is right. I have tried all the "hot label" brands and they are not full of heat. I used to love that stuff for loosening sinuses. It's not availabe in Ohio even at the Jewish Deli's. Making your own is dangerous business from the fumes of the root. Just wondered if that stuff ever helped you. But anyway, when my sinuses feel tight, I CRAVE hot horseradish in a cocktail sauce like used for shrimp, lol. Good luck.

Good luck Hayley, on all accounts! Hope things are productive for you.

Emily Good luck with the marinol!! I asked my doc about it last year but it was SUPER EXPENSIVE!! hundreds of dollars...at least whatever one month supply he typed in on the blackberry or whatever his gizmo was called. SO I told him what if I could find some to smoke. He smiled. I said "can I try it with your blessing". He laughed and said "no, it's illegal". I said "ok, but I am going to try it OK. I want you to be aware." he said ok and just grinned!!. Did you take it at bedtime? the reason I ask is when I tried to smoke at bedtime, it keeps me AWAKE!! My sister found a 'head shop' from a shamanic counselor friend. This person at the head shop was MARVELOUS. She told my sister she KNOWS of a doc that will prescribe "medical marijuana" like they get in calif....to smoke. Anyway, my sister told this person about my situation. She said to only use a glass pipe and tiny propane lighter for purest 'dose'. smoking a cigarette was nasty, harsh and made folks cough. A pipe, you can control it, and just take a few hits. She was right. A cig was GROSS and the smell. Tiny amount of smoke with pipe. But you still want to do it in garage or walk in closet...but just a little bit so you dont smell up clothes. so I am coming out of the closet to share this.... Unfortunately, due to my vision, reading glasses and far away glasses made lighting this pipe scarey!! It was in between the two lenses . I used the ENTIRE LIGHTER trying to smoke on a few different occassions before using matches, lol. I couldn't see over the pipe(blurry) and holding it farther away, it would light quickly and easily!! Matches taste dirty but i did help my nausea A LOT!!!! AND restored my appetite. It just takes a few tokes. I only used it a few times and have some on stand by. This clean lighter fuel I used up practicing the darn stuff. But the pipe is a pretty green color! I wanted to email an old neighbor- married to a policeman, who is now a detective and ask about the laws, and fines!! He gave them in detail (this was months ago) and said to just KEEP IT IN THE HOUSE!! I thought having a pipe would put me in crack head territory but he said that is a different glass pipe. Anyway, the smoke method works on the budget plan if you can get a 'clean smoke'. The herb was a gift. The woman at the head shop gave my sister a free lighter and discount on the glass pipe due to my illness. My sister got the pipe for me but left the sticker on!! Pricey gadget...$44. BUT my sister DID NOT use the word Dysautonomia. I heard the tablet form helps lots of people and others benefit better from the smoke. Especially we older people due to stomach and how it digests and absorbs things. I don't know if the intrinsic factor is involved but I would take the marinol in a heartbeat if I could afford it. Let us know if it helps...with sleep...with appetite. With anything. Good luck. P.S. I wasn't going to post this but what the heck. I wasn't paranoid but you never know.

Wow, Morgan, while I was editing my post, you were posting and said similar things that I did...especially about how other people percieve us. Wow..that is weird. But good weird. Oh, I just remembered it was motivational speaker, Les Brown who was told that comment about 'never let other people".

Hopeful girl, I was saddened to hear you are dealing with the addiction of Internet porn. This is such a SECRETIVE widespread problem, you may or may not know. PLEASE know that your husband's addiction has nothing to do WITH YOU. Men may try to place guilt about their women "You are never in the mood, so what am I supposed to do?" kind of tactics. It's just as real as if it was another woman in person. Due to the anonymity of the Internet, pornography IS the driving force of the Internet. MUCH like porn videos is what made the first VCR's so popular and affordable!!! due to the demand. ain't that nice to have pornographers for making my VCR so affordable way back when. My therapist told me she knows of a woman, WHO'S SOLE PURPOSE in her job, is to search the laptops of men at a TOP FIRM IN THE COUNTRY. Her job? To look for porn and so far, she has found it on most EVERY COMPUTER. I am no prude but do wonder what drives this in people. Or should I say, I know addiction is addiction (just different manifestations: drugs, booze, food) but does anybody ever think about this? : Years ago, to get a dirty magazine (I am not talking Playboy but the hard core stuff) a man had to WALK INTO A STORE and face somebody, and either pick up or ask a person for a certain 'men's magazine' behind the counter. Then, you had to pay for this magazine in PERSON. That took nerve to go in public and ask for such material. Now, you can get ANYTHING in the privacy of your own home. The Internet is WONDERFUL in many ways, but scarey and horrible in others. I hope you are able to seek counseling for you and your husband or just yourself. I am glad you are teaching your daughter good values. But somehow, this topic came up at one of my therapy sessions and my therapist is almost 70. She said sexual addictions are SO RAMPANT as she has never seen in all her years of being a therapist. This is due to a complexity of reasons but the media fascination on what is "hot" (I sometimes want to VOMIT when I hear that word!?) is over the top. Then there is the term..well, I can't even type the initials here but I heard them used on Trumps' the APPRENTICE last year and was enraged it was NEVER BROUGHT UP BY THE MEDIA???????? Remember when being thin enough was the problem. Well now it's plastic breasts, plastic lips (what IS IT with these overblown lips? Do women think it looks good?) cheek implants, Botox...but to such EXTREMES! The fascination on 'sick sexy celebrities' doesn't help. Those famous for being famous or infamous (Don't get me started on Paris Hilton) Anyway, I felt saddened to hear of your situation ...and of others in relationships in which there is a struggle. Especially in being appreciated. Everybody deserves to be treated like they are the most special person on earth. And as I once heard said "NEVER let somebody else's opinion of you, become your reality". We are all beautiful just in different ways. I hope those of you who are feeling unappreciated will look in the mirror and if you think you deserve more, tell that reflection in the mirror. And then do something about it. Take of yourselves.

Ernie, I would LOVE to have your problem! LOL. I was always a woman who ranked sex up there with food, water, exercise, roof over head, money to pay bills!! And I believe weight has nothing to do with it. Being or feeling sexy is 'an attitude', I sadly, wish I had back. I have noticed that with some men I have met. They can even be WAY overweight but are still appealing as all get out. Also a friend of mine and her twin sister have high sex drives and said it is a "family curse". Everybody on their fathers side had it as well!! Gosh, I can't imagine TALKING to my late father about s-e-x, let alone talking about my libido with him!! Or even my mom!! Heck, I often don't even THINK about it anymore so it really makes me feel like an old lady. Years ago my endo gave me testosterone via a compound pharmacy and it helped. A LOT. Even though my "free testosterone" was low normal, we gave it a try. It did help. I am no longer in any long term relationship but still, it would be nice to have "it" go through my mind once in awhile.

Wow, great article Gayle! Thanks for posting. I remember years ago seeing a man get some brain surgery WHILE AWAKE to help his parkinson's!! I can't imagine being awake while they drill holes thru the skull!!! But it helped him so much. I sent you an email and I hope you get it. I am back home at my own computer. Yay.

I am not familiar with this show but another one on a cable channel. I have a feeling somebody is about to get some exposure on that network. But until I know for sure and the show has the film in the can, I ain't talking. Too much can happen to change the status with a producer to air or not air a show that's on the shelf ready to go. If ONLY some celebrity on TV would FAINT during a live awards show !!! And I still remember when President Bush "choked and fainted" while eating a pretzel. Only one article question what that real story was about...but if you remember, Bush senior once vomited and then fainted on the lap of an Asian dignitary at a dinner. Though these incidents MAY BE EMBARRASSING, they both were examples of at least temp ANS problems. My sleep doc had a few shows interview him for odd illnesses (sleep terrors, narcolepsy, etc). Some shows were positive and some were controversial. While ANY exposure is better than none, getting across the seriousness of the illness is CRUCIAL as the fact that many pts are walking around not being dx or written off as anxiety ridden females. He had a WONDERFUL, positive story on Narcolepsy, but by the time CBS spliced his story with others, it was VERY disappointiing. Remember when MS was called hysterical paralysis? Most victims were female. But we now know that is a serious illness. I am glad to see MVP Syndrome get some airtime as I know somebody who tried to get some tv to sponsor a show on that illness since many are familiar with MVP itself. I wish I knew that person by their real name instead of a board name even though I have not visited that board for years. Many a marriage has broken up over invisible chronic illnesses and I left my own years ago because of this. Back then my dx was CFS and EVERYBODY claims to be tired. But how many can ever pronounce Dysautonomia? A six syllable word! LOL

Ernie How many steps are there to your front door? Have you checked into those ramps used for loading furniture onto moving trucks? My nephews brought some furniture last week and the truck is about 3 feet off the ground. The ramp is strong aluminum or metal with ridges for tracking? Maybe if you could get a hold of one of these and put some heavy stacked bricks or stones at the end of the base on the ground to keep it stable?? Don't know it if would work. Just a thought. Sorry I forgot you were in Canada. I know folks from all over and across the pond in Europe post here.

thanks for posting this site. I had never heard of it either! The problems with NIH and funding reminds me of the fight the CFS groups had in the early 90's!! Sheesh. It's pitiful all the money is spent on dx and not more on treatment. So sad Dr. Streeten passed away..he was so ahead of his time in his fascination with the ANS. I hope in the future some media enlightment may help show how WIDESPREAD this illness is (over 500,000 estimated to have ANS according to many specialist) And not to mention MANY not dx or wrongly dx. Great site!

Nina Thanks, I had no idea...I couldn't tell by the wording of her post she was in Canada. Sorry. I do hear stories of the frustration of their Canadian medical system though!!! Yikes. again my apologies for giving bum info.

Ernie Have you checked out these sites? Don't know if this would help or if you could get somebody to build one for you as mentioned earlier. http://www.americanramp.com/ http://www.discountramps.com/access_ramps.htm

Ernie, I can NOT believe they told you to leave the wheelchair outside!? If your doctor got the paperwork validating your need for it, I don't see how some 'ergonomics person' can UNDERMINE your need for the chair and the obvious need for a ramp. But that sounds indeed, like what she is doing? Does she know what orthostatic intolerance is? Do you have disability with Soc Sec or through a job? Because if your dis insurance is through a former employer, wouldn't your need fall under the the ADA (American Disabilities Act) I have no clue what I am talking about there but the need for a chair for you to get around, yet a "no need for a ramp" from somebody makes NO SENSE! If you have had to go thru the system on your own, I think Nina's suggestion may be your own route to try. I have noticed there are strict laws about ramps but when I drive by some homes, there are some major differences in the type ramps done, so I wonder who makes these rules?? Sorry you are so frustrated. They don't just hand out wheelchair papers to anybody. The fact you are getting a runaround about a ramp is ludicrous. I hope you can get some answers from SOMEBODY! It's sadly another case of INVISIBLE illness and the folks you are dealing with "dont get" the illness.

ar1218 Ditto to what Morgan said. the ANS can affect our endocrine system and vice versa. If I have had to wait too long in waiting room in the AM to get blood drawn, I get symptomatic and my cortisol levels can be a bit high. Next time, no wait and a bit low normal. Now i just tell people I need to lie down for blood work or I faint and we seem to get truer readings....at least for me. . My prolactin levels have been all over and my aldosterone slightly elevated at times. W/o aid of medications. Then being 48 can do odd things to women's hormones as well with this illness. So we can often have symptoms of "one thing" and then tests don't prove it to be true, or even the opposite can be true. I had normal periods and no headaces many years ago but had an MRI to check for pituitary cyst/tumor due to high prolactin levels. My endo was speechless.... them in the elevated range. Checked later, they were much lower???? It's like different blood from different peole and I know many others have experienced similar blood work. Sometimes I wonder if in the places that study ANS pts, do they draw BLOOD for the endocrine checks 24/7? My endocrinologist thinks many times our glands can fluctuate in what they spit out but you have to "catch it" in the act. Hence, many of us have 'normal' blood work done say for thyroid...or cortisol...but our thyroid gland and adrenals may be low throughout the day and higher other times. I am convinced my cortisol leves are out of whack at NIGHT that adds to my circadium rhythms. But w/o a phlebotomist to follow me or others around, who knows how our complext ANS system fluctuates. And I have not had access to a phlebot at 10 pm, midnight or 3AM. Though the late ANS endo specialists Dr. Streeten used to check things at odd hours in some patients. But too many of us havd similar symptoms, with oppositve blood work or vice versa. So I believe anything is possible. And tests may or may not give true answers. Why? because what is 'normal in a lab test' may NOT be 'normal for our bodies'. So its' complicated. Kristen re: Chinese medicine doctor.? There is an MD locally who practices Chinese medicine. He is also an oncologist and acupuncturist. I am kicking around the idea of seeing him but can you give me a clue...the Chinese Herbs they tell you to take, do the doctors sell them to you? Or tell you where to get them and are they expensive? I think there is much to learn from Traditional Chinese Medicine but don't want to waste the docs time if the herbs are expensive. My accupuncture would be a birthday present from a friend...a couple or three visits. Medicare doesnt pay. I had free acupuncture once with INTERESTING results from a friend of a friend years ago. Loved the session! good luck to all.

Sorry Patricia, Didn't mean to hijack the thread or add to it. Just wanted to give feedback about college not being what makes a person worthy or not. Have to run but will edit my post later or remove it. Peace! P.S. Many of those successful people DO have extreme disorders but I don't want to list what matches whom. But you can put bipolar and severe mental illness in to some of those. So I meant to post, not only can you not go to school, but many GREAT ARTISTS and inventors and creative types have mental illness but are most successful in their careers!! There was also that young man on 60 minutes some years back who was autistic and I think mentally challenged but he played the piano like a VERY STUDIED concert pianist. Sorry again if I hijacked this thread. Gotta run to my sisters. My ride is here.

Hi Yes, I have had my share of problems with sexual response...It's frustrating to have sex go from being one of the top 10 in the priority department to top 100.> After little things like standing, walking, eating! lol...sheesh...this part of the illness has made me feel really old. We always want to show love when we can but not if it makes your heart rate zoom or room spin. Here is a site that expains the autonomic connection...and it mentions the 'psychological' aspects (I don't think that means us, OUR is definitely ANS related) AND it mentions how head injuries affect the sex drive. This is a site that may have way more info than you needed to know but it's an interesting page to read through. http://serendip.brynmawr.edu/bb/neuro/neur...eb1/lwelsh.html

Morgan Thank goodness you have a therapist that believes you. I agree, being a 'non doctor', that to think one can FAKE such BP changes and chemistry in the body is amazing. I am glad your drug tests came back clean but I can imagine how ticked one would be to be checked for Munchausens!!! ??? And low potassium and B12 has never been on the list of 'mental disorders' that I have read!? I am glad you have SOMEBODY LISTENING to you who can make better judgements. And I have NEVER heard of faking paralysis?? Well, except for soap operas. You have been thru the wringer lately. I can NOT imagine your frustration. Hang tough, kiddo...I know you already do. But I hope you find an enlightened MD doc to HELP YOU. Great to see your name here. Take care, Sophia

Calypso Do you have the dx Chronic Fatigue? I ask because many of us have post exertional malaise after exercise. And then there is another word (I can't REMEMBER it now maybe somebody else can) where we get flu like symptoms, low fever, etc. My neck glands often hurt...actually my glands can hurt before I start my period and those body parts aren't even close and that has happened for YEARS before my ANS got bad... I get this acheyness alot when I have overdone it. EVEN on good days where I pushed and got something accomplised and thought YAY. Sometimes the after affects would take 24 hours to hit and then last a couple of days. I can't remember if it's because the cytokins that build up in the body or something else. I need to check some of my bookmarks later when I have the time. But POTS could possibly cause the same thing since so much of the body chemistry is out of whack. And I get the delayed thing after exercise frequently. sometimes within a few hours but sometimes, not for 24 hours or so. It's odd and annoying. There is a rebound affect to exercise in CFS but i can't pull it up in my mental dictionary right now. I hope you feel better soon.