melly4

I just wanted to post one last time, although it will probably be censored. I came here looking for support for my 13-yr-old and myself. But, because one of the powers that be have decided to censor my opinions and support to someone here who was going through a troubling time along with her dysautonomia, which is worsened by stress, I feel I need to say goodbye. To my friends who have supported me and offered wonderful advice, and they know who they are, I say a big thank you and send a big hug. I have had a really bad POTS crash today, due to my overdoing it and from the emotional stress of feeling censored by my forum of hope, I'm glad I'm off to the cardiologist tomorrow. My son and I will get through this. I love him dearly, and will continue to seek the best of healthcare for us. I wish the same for EVERYONE here, even those who I have somehow offended and don't want me here. That's okay. I understand. I love you all and thank you again for sharing your experiences, good and bad, and for giving us advice. Love, Melly

I can't take nadolol or imipramine because the low BP. I tried depakote for a while. It prevented my migraines, but it made my GI issues worse. That's why I'm being referred to a neuro. They're running out of options!! My primary called today and they have me set up for the neuro on the 17th of Nov. Thanks for the support, Melly

While waiting for my primary to refer me to a neurologist (still hasn't happened), I got another migraine at night. So, in desperation, I gave the maxalt another try, even though it didn't help the first time. It made me have bradycardia and lots more premature beats. My heart rate didn't get out of the 40's for a while. Very strange. I usually go from 60's to 100's upon standing. Has anyone ever had this reaction to Maxalt? Thanks, Melly

Please familiarize yourself with the forum rules before posting again. Michelle Sawicki

Persephone, I'm sorry you're having the achy legs, but I'm glad someone finally posted on this. Yes, my son and I both have the painful legs,esp. knee down. On top of that, I have a strange reaction to certain meds (remeron and phenergan)that causes me to have restless leg syndrome. Hope you feel better. Melly

Julie, I'm sorry you're hurting. I'm glad you're not facing surgery at this point, though. I hope you get some better answers soon. Melly

Corina, I'm sorry for what you're going through. I wish I had some brilliant advice to give you on how to handle docs that put lies or "distortions of the truth" in your med records, but I don't really. My wonderful internist I saw before I moved told me to "start fresh" with any doc I saw or my son saw, because of the "anxiety" in my records. He said it should never be used and abused in my medical treatment for other non-related issues. Besides which, my other troubles CAUSED my anxiety, not to mention 3 and a half years worth of dumb docs. Of course, as soon as I moved and found a new primary, he asked me to sign over my med records!! I got my children's records in hand when we moved, and was shocked to see what was written in my oldest son's. He was recently diagnosed with POTS here, and I found "anxiety" written in his files. Please. This is a kid who goes to taekwondo tournaments and teaches little kids taekwondo, even when he's feeling bad!! Yeah, he really has anxiety. Yes, some docs are dumb. I say get out the paper shredder and take out of your records what you don't want anyone to see, and then take your records that are important to a new doc. And don't feed them anything they can run with, like former eating disorders!! I used to have anorexia years ago, and now would be considered anorexic at first glance because I can't gain any weight. But it isn't from self-imposed starvation; it's from inflammatory bowel issues and morning nausea. The rest of the day, I eat like a horse. So, take my internist's advice, and tell a new doc only what they need to hear to help you. Sorry for the long sermon, but this stuff makes me mad. You shouldn't have to stand for it. Melly

Hi, Nina. I hope your sinus infection clears up soon. Gosh, you are doing so much, and battling med illness and the medical community at the same time!! How do you do it? You're an inspiration. I really would love to go back to work and graduate school, but don't see how I could right now. I can relate to your migraine issues. I am STILL waiting on my primary to refer me to a neuro. I'm sorry yours didn't have much help to offer you. Take care and don't push too hard!! Melly

I just wanted to say I'm sorry for all of those who have been hurt by porn addiction, mental, physical, and sexual abuse by their spouses, boyfriends, or parents. It is a lifelong trauma that never "goes away", no matter how much therapy you've had. Morgan, thanks for "getting it". Porn is degrading to women . Period. Hugs, Melly

Good luck, Hayley. I hope you get some answers and treatment options from your neurologist. Melly

Hopeful Girl, I'm sorry that your life, too, has been affected by porn addiction. Don't feel alone. After my husband and I had our first child, I found his "stash" of hard-core pornographic tapes. I was shocked. He was raised in a strong Christian family, graduated from Bob Jones University, and had promised me when he asked me to marry him that he was not into that stuff. I asked because I had a small child at the time from a previous marriage and didn't want him around that. I later found out that he was a sex addict, that he frequented strip clubs on his first wife, and that he had been addicted to the porn tapes since he was young and had found his father's "stash" of magazines when he was a little boy. I am no prude, either, but I know that this affects people's marriages and small children if they were to find this sort of thing and not understand. It has been spoken about in my church. And, yes, the internet has made this even more accessible to everyone. It's one thing for a couple to view porn together, but it's cheating if one does it without their partner. It has also contributed to the inability for me to be intimate with my husband, among other things. Who wants to have sex with someone who can't be romantic and lies all of the time? He has learned from porn that women are objects to be used and they don't have feelings. I refuse for my sons to learn sex from a magazine or a video. You're a good mom to try so hard to build up your daughter's self-esteem. Lauren, thanks for the support. I couldn't get my husband to therapy. He says it's not a problem anymore, but he's lied so many times, I don't know if I could believe him anymore. Frankly, another country sounds like a good place for him to be!! We're trying to work through it. But if my children were older, I'd be gone!! Don't worry, though. We are talking some, and he understands I need for him to be more supportive of my illness. He's been asking around work this weekend about the cardiologist I'm seeing Wed. That really made me happy to hear that he was doing that. So, he either must care or he's afraid I'm going to leave. I was watching "Breaking Bonaduce" last night on VH1 and decided I didn't have it so bad. His wife's way more co-dependent than I am!! Boy, have we opened up a big can of worms with this thread!! Melly

Morgan, you are not "bossy", just truthful. I thank everyone for their support. I actually felt stronger after reading Morgan's and others' posts. I used to feel so strong, independent, beautiful, and yes, sexy. I still get the glances. After reading so many of your posts, I have come to realize that my lack of sexual desire is not because of my illness, but perhaps because of who I am with. Women, too, can have a strong sexual drive, but if they are with a partner who isn't emotionally satisfying to them, it can be a real "turn off." I'm tired of my husband ignoring me when I'm talking to him or sharing my interests. I had such an incredible sex drive until I married him and felt like the proverbial "trophy wife". He flaunted me to his friends. I sometimes think he only married me for sex, which bothers me. A happy relationship is one that is fulfilled in ALL aspects of love. No longer will I let him affect my self-esteem. I am a great mother and a great friend. If he can't see that I'm a great wife, despite my illness, who needs him? As Cher once said, "I answer to two people: God and myself, in that order." Okay, sorry for the speech, I'm done. Melly

Hi. I'm really glad you had a good experience. Melly

My problem is that many of us who have either been misdiagnosed with anxiety or other mental illness or have anxiety along with our dysautonomia cannot "shake the label" of mental illness. When many (not all) healthcare personnel see a mental illness diagnosis in your chart, you are automatically treated differently in many cases. Symptoms or injuries not related to the "mental illness" dx somehow get attributed to the "mental illness". For instance, my very sick gallbladder was misdiagnosed as "GI problems associated with panic disorder". When my head was bashed into the side of a U-Haul truck this summer, the paramedic noted that I was taking depakote (for migraine prophylaxis) and Klonopin ( for vertigo spells and anxiety attributed to heart palps).He assumed that I must be bi-polar and had panic. He assumed I was having some sort of breakdown ( actually, I was having a C-spine injury, as later diagnosed via X-ray). The only reason he needed to know what meds I was taking was so that I didn't get anything mixed in my system with the meds I take that could cause a dangerous reaction. He had no right to try and diagnose me: He wasn't a doctor!! I also have a friend who does have panic disorder who had a massive MI after his chest pains were dismissed by the ER docs as panic-related. And my oldest son (now diagnosed with POTS) had his syncope and tachy originally misdiagnosed by a peds cardiologist as school-related anxiety. He somehow missed the fact that my son was homeschooled!! I apologize for my rambling and venting, but this subject of our symptoms being misdiagnosed as mental illness or our mental illness being the cause of ALL of our ailments really gets me going!! Peace,love, and better healthcare, Melly

There are different causes of vertigo. For me, it seems to be related to my allergies. I have episodes every fall. My ENT explained that this can occur after many years of inner ear infections, as I've had. But, like I said, there are other causes. You should see an ENT. I'm sorry you are experiencing this. It's a miserable feeling. Klonopin helps me get through episodes. They usually subside within a few days for me. I hope your spins stop soon. Melly

Jessica, I'm glad you had a good time. As a mother of 4, I think you deserve a purple heart medal just for surviving a plane trip with 2 kids, let alone having POTS, too!! Melly

Rhada, I agree with Nina. Just about any med can lose its effectiveness over time and require higher doses. I am also having trouble with my migraines becoming more severe and more frequent. Unfortunately, Imitrex and Maxalt never worked for me at all. And I hate taking hydrocodone, because of the side effects. My primary is sending me to a neurologist for help. Have you tried any prophylactic meds for migraine prevention? I tried imipramine and nadolol before I knew I had ortho intolerance issues, and my BP disappeared!! I also tried depakote, which absolutely made my migraines disappear, but made my inflammatory bowel issues worse. With dysautonomia, it's like having to trade off one symptom for another!! I hope your doctor can find something that works for you with minimal side effects. Melly

Ernie, I am angry and frustrated for you. I think Nina's and Morgan's ideas combined could be a great answer. A local church group or even Habitat for Humanity might would be willing to build you a ramp. I know if you lived in my city, our church group would definitely do that for someone like you, who is in need. The government can be such a pain sometimes. Good luck, Melly

Morgan, thank you for the lecture. I did ask my husband the night he got so frustrated if he thought I would leave HIM if he was in an accident ( which can easily happen driving around here!!) and was unable to function sexually and was totally dependent on ME for a change. I think it made him rethink things a little bit. I told him he better be careful, just because I can't work right now. I'm waiting on disability, but I hope I'll be able to go back to work with help from the right doctor. I had a wonderful career when I met my husband and didn't depend on anyone for anything. I hate being in this position of needing someone to take care of me. I've always been the caregiver. That's why I got into healthcare. That's why I had children. My husband has turned around (for now, anyway). He's getting me a dog I want so I won't be lonely when he's at work at night. Maybe he feels guilty for blowing up. But your post made me realize that I don't deserve the "sick wife bashing". I'm strong enough and resourceful enough to not let myself or my children be subject to his tantrums again. And to you other ladies in the same boat, unite!! Don't stand for it. Remind your horny companions that the tables could turn in a moment's notice. Thanks, everyone, for the support. I was really embarrassed to post what happened the other weekend, but needed to vent. Now, I know I'm not alone, not that I wish this on anyone. Melly

This is a difficult area for me. I'm impressed by how brave everyone has been to respond to the topic, and for Lauren to post it. My husband and I had a very active sex life (I have four kids to prove it!) before I got sick. Now, I feel either too tired to bother or feel as if I'm going to pass out, even when lying flat!! And my husband hasn't been the most understanding at all times, which really bugs me since he's a nurse. It has been really hard on the marriage. He threatened to leave last weekend because he said he's tired of dealing with illness. I know he's surrounded by sick people all day, but I'm his wife!! Whatever happened to "in sickness and in health"? And our 13-yr-old was just diagnosed with POTS!! I'm really happy for you who have supportive significant others. Hang on to them!! Sorry to add my sad tale. Melly

Persephone, I hope the new med works out for you. You are truly amazing to be at Oxford and have your BP crashing like that!! I agree with Lauren. You should get some sort of medal!! Let us know how you do on the Florinef. Melly

Hi, Morgan. Glad you're back!! You've been missed and worried about. I,too, had a therapist who believed in me and thought that, though I had anxiety, my "panic attacks" were caused by some medical issue and that I did not fit the "profile" of an anxiety disorder. This man went to my church. He knew me. I think it is a disgrace the way you were treated and so quickly diagnosed, or should I say "misdiagnosed". I mean, come on, munchausen's?!!! And, by the way, cardiac arrhythmias run rampant in my family, and my cousin has had two unsuccessful ablations, one at Duke. It wasn't because his atrial fib was psychogenic!! Have you ever been worked up for pheochromocytoma? Just wondered because of the BP and sweating. I apologize if you have posted that somewhere already. I'm sorry you're feeling so poorly. Please rest, but let us know how you are when you are up to it. Sending hugs and wishing better healthcare for you soon!! Melly

That makes sense. I didn't realize they didn't charge a fee if you got approved on your own. I hope I don't get denied, because my ducks WON'T be in a row, and I'll have more waiting. Ouch!! Let me know who you decide to go with. Good luck, Melly

Lauren, THANK YOU!! It's great to hear there's a doc in GA, other than the peds doc my son sees, that is knowledgeable with dysautonomia. I'll keep his name, in case my cardio appt. on the 26th goes poorly. Thanks again and good luck at Vanderbilt!! Melly

Hi. I filed for disability back in April, but I moved in July so I got to add a couple of months to the wait because of moving to a different state. They tell you it's usually about 4 months until you hear a decision. It's taken 6 months, in my case. I had to go through the mental health exam, also. Mainly because I saw a physician in SC who insisted that I had panic disorder. I may very well have anxiety issues, but who wouldn't if they had syncope, heart palps, tachy, hypotension, etc.?! Anyhow, I have just been informed that they have sufficient information after my exam to make a decision in the next week or two. I had also called Binder before I started the process, but decided to try it on my own first. I guess I'm patiently waiting to hear what they say. If the decision is not favorable, then I will most definitely pursue legal representation. I'm at a loss as to who you should get to represent you. I'm sure others here may know. I just wanted to let you know you're not alone in the process. Wait until you hear what your decision is based off of your med records and the exam. You may be surprised to find out you get a favorable decision without legal counsel. There has been a lot of discussion about disability on this forum. Some people seem to have had no problem with getting disability and some have had to hire a lawyer. Maybe we'll get lucky!! Best of luck to you!! Melly