melly4

Sorry about your aggravation. I don't have answers, but much sympathy. I have also had a rotten time with my periods. I have terrible cramps, migraines, and like you, it can be very irregular. Sometimes every 20 days or every 20 months!! I never had a problem with fertility, though. My problem was staying pregnant. I have 4 children out of 8 pregnancies. I also have a lot of spotting instead of what I would call a "regular" period. Just a really light and short flow. I hope no guys are reading this, because it's probably grossing them out!! I have had my hormones checked. Everything turned out normal, except my prolactin level was low. That was interesting to me, because I have always felt my best when I was breastfeeding, when, of course, I had high levels of prolactin in my system. Has your doc checked your female hormone levels? I do hope you get an answer and help to this problem. I can't make it out of bed when I have cramps. You must be in misery!! Hang in there. Hope you feel better soon. Melly

Worthewords, The konopin doesn't make the vertigo spells "go away", but it helps with the anxiety caused by them, if you know what I mean. I understand a lot of ENT's will prescribe Valium for vertigo. I've never personally tried Valium, just Ativan,which didn't help, and the Klonopin, which is starting to lose its effectiveness, I think. I understand that taking a benzodiazepam long-term will sometimes do this. I'm seeing a neurologist soon. I hope he can help, or send me on to the ENT. Sorry you have vertigo, too. Melly

Sorry you're feeling bad, Lauren. I have a lot of tummy troubles. Inflammatory bowel stuff. I used to have ulcers and reflux, but it went away after I had my gallbladder out. Definitely talk to your doctor and let her/him diagnose your troubles. I hope it's something easy to treat and that you get to feeling better soon. Melly

Okay, I've been jinxed by this topic. I woke up this morning with my head spinning violently , and it's my daughter's birthday!! I get vertigo every fall. I suppose it's due to allergy troubles, but it's absolutely unbearable!! I totally sympathize with anyone with vertigo. It's not like we don't have enough to worry about with falling down due to syncope, but then throw in the falling down due to lack of balance....Arghhh!! I guess this is why we call this time of year "fall". Bad joke. I'm going to go take a klonopin. Sorry for the moaning and groaning!! Melly

Congratulations!! Good news can lift our spirits. I'm happy for you.

Sorry you're having a rough episode. I hope it gets better for you soon. Melly

Best of luck to you. Have a safe trip. Melly

Thanks, Melissa. I'll mention the relpax to my doc. Actually, when I posted, I was on my second dose of Lortab and was regaining composure!! No, I couldn't have posted in the midst of my misery. I'm just so tired of the prophylactic stuff not working or making me have worse side effects, and then having to crawl into the dr.'s office begging for opiates to get me out of the crisis. I really needed some expert advice here from people who actually suffer from migraines, like you, to prevent myself from having another one. You all have taken a variety of meds, some the same, some different than me. It really helps to know what's out there to help your dr. prescribe something different. The doc I saw during my latest episode had never heard of Maxalt!! And she had migraines. I hate taking Lortab. It makes my heart palps worse, but it's better than hurting. So, again, thank you. I have another med to throw at my docs to try. I so want this to not be a twice-a-month thing anymore. I can't function like this. What's scary is that I don't remember driving to and from the dr's office I was in so much pain!! Can anyone relate?

Goldicedance, you are absolutely right about taking meds at the first sign of migraine. That's what was so frustrating about this latest episode. I did just that with the Maxalt. I ended up with 2 useless doses that were taken very early on. No help. By the time I got an appt. with the dr., I was sobbing and severely nauseated!! Lortab was my only way out at that point. There has to be a better way!! I know I'm just going to have to be patient and see what the neuro doc says....and pray I get in to see him before I have another period!! Thanks, Melly

Hi, Ariella. That is a great question!! I have frequent outer and inner ear infections, usually at this time of year. The outer ones hurt, and the inner ones give me vertigo. Do you have any balance issues? Melly

Thank you all for your support and suggestions. I will certainly ask my cardiologist about the aspirin therapy. I've tried imitrex, and also thought I was having a heart attack!! If the neuro throws an SSRI at me, I'll run screaming. Hydrocodone works well, like today, at making it through a crisis alive. But, in a perfect world, wouldn't it be great if we just didn't have migraines at all? I even jokingly suggested to the doc I saw today that maybe I should have a hysterectomy!! She was a lady doc, who also suffered from migraines. I could tell before she told me this because she turned off the blaring intercom music in the room as soon as she saw me!! I wished she could have turned the lights off, too. I'll call and see if she'll be sure to find a neurologist who specializes in headaches, if we are lucky enough to have one here. Thanks again for the much-needed suggestions. Ever grateful, Melly

Please let Morgan know that she is missed and that I wish her the strength to get better after such a traumatic ordeal. I also hope you, the rest of her family, and friends the strength to help her through this. I am so sorry this has happened. I think I can speak for those members here in saying that we are also here to support family members and friends of those affected by dysautonomia issues. Whatever her diagnosis is, it is very real and sounds like she has been through horrors. I will keep her and her family in my thoughts and prayers. Please keep us posted on her condition in the future, even if she does not wish to right now. As you can see, so many people here care about her. Melly

I'm having one of my killer migraines. It started last night and hasn't stopped. I talked with my primary doc about my frequent migraines last month, and he prescribed Maxalt, which does nothing except give me a runny nose. So I went in this morning and saw another doc, since mine wasn't in. She gave me some hydrocodone to get me through this episode, and asked if I had tried anything for prevention, like SSRI's, calcium channel blockers, and beta blockers. She obviously hadn't looked at my chart. SSRI's make me crazy, I have hypotension (69/33 on Monday). So, no, her methods weren't going to help me. I am very careful about what I eat. But there's nothing I can do about the female hormones. If I ovulate or have a period, I get a migraine. I've taken depakote, and it did help with preventing migraines, but it made my GI symptoms worse and knocked me on my bum. I have enough of that without medication!! I don't want to take opiates twice a month for the rest of my life, if I can avoid it. She is working on referring me to a neurologist, which I think is a great idea, since no one has really done a thorough workup on my migraines before, and I've heard neurologists are good with this. How do the rest of you who have low BP treat and/or prevent your migraines, other than avoiding the obvious dietary triggers? Has neurology helped anyone here with their migraines? Thanks, Melly

Sorry you went through the "unsympathetic" healthcare worker routine. You deserve better. It really makes me angry that so many people get blown off when they're hurting or having scary symptoms, especially coming from a healthcare background. I would have never treated a patient that way!! She definitely sounded like a witch...but it is getting close to Halloween!! Seriously, though, get this checked out by someone else, if they can't see you any sooner. I was misdiagnosed as having GI problems related to anxiety when I was having gallbladder issues. I ended up firing my GP and going through the phonebook until I found another doc who could see me right away. He was the one who sent me for an immediate abdominal ultrasound, which revealed a very sick gallbladder. It is odd that so many of us have gallbladder issues. I didn't fit the typical profile for gallbladder problems. I was young, thin, and not an alcoholic!! I hope you get help sooner than next Wednesday. If it is gallbladder, it isn't something to wait around on. It could rupture. If you have another bad attack, where you are in intense pain, go to the ER. My pain was mid-epigastric and would radiate to my right shoulder and my back when I had a bad attack. Then, of course, I would just vomit every time I ate, even when I wasn't in a lot of pain. Please let us know how things turn out. I'm a mom. I worry a lot. Take care, Melly

Happy Birthday!! Oh, to be 21 again... I do hope you are feeling well so that you can enjoy your big day. Melly

Hi. I had a worthless CT scan, but, like Tracy, the ultrasound (along with my wicked symptoms) told the story. Radiology wouldn't let me leave their facility until I talked to a surgeon!! And one week later, my gallbladder was gone. Good riddance!! Melly

I'm sorry about your experience. My son and I have both been there. I hope you didn't pay the jerk!! Don't give up. There are some docs that will listen and learn, even those without much dysautonomia experience. Melly

Congratulations!! I'm so excited for you. I always felt better when I was pregnant or breastfeeding. I wish you and your baby (or babies!) great health!! Melly

Everyone has given you really good advice, so I can't offer anything new except to tell you to hang in there. I truly hope you feel better soon and you get good news from the doctor from your test results. Melly

Piage, I will keep you in my thoughts and prayers and hope that the hospital staff will be able to help you through this dark time. You are not "worthless", even though being disabled can make you feel that way. Please hang in there and know that everyone here is cheering for you to pull through. Hugs, Melly

Hi, Roselover. I don't think we've met, as I'm relatively "new" here. But I wanted to give you a formal hello and say that I hope you feel better soon. I can totally relate to the hypermotility and weight loss. Good luck at Vanderbilt. Take care, Melly

Hi. I homeschool my 13-yr-old who suffers with the autonomic dysfunction crud along with me. I have never tried to work with the local public school system, here in GA or when I lived in SC. In SC, there was once a big stink about homeschoolers not being allowed to utilize public school resources that OUR tax money used to go to, but I think some laws changed that. In SC and GA, if you follow the legal guidelines for homeschooling, they spell out specifically how to get your teen high school credits. In both states, the homeschoolers and approved correspondence school teens get the same high school credits and diplomas as other kids. If you are unsure or have had problems in your local school district or state, I highly recommend visiting the HSLDA website (Homeschool Legal Defense Association). They have specific, up-to-date legal information for each state regarding non-traditional schooling. I think their website is www.hslda.org. If you join their organization (there's an annual fee) and you find yourself needing legal help regarding your child's education in your state, they will send one of their lawyers to represent you at no charge. Melly

Don't be nervous about the mental exam. As I mentioned, I had it, too. The guy was really nice to me. I just wrote down everything I could as far as symptoms and impairment, last work dates,etc. I had already signed a release for them to get my med records. Just answer his questions and be honest. Oh, and I brought my meds that I was currently taking and a picture ID. They asked for that. Be prepared that they might take your picture for ID purposes. He took mine. It was kind of like the CIA, though. They interviewed me and my husband together, then my husband alone, and then me alone. I guess to make sure our stories corroborated!! I hope that doesn't make you more nervous. He really was very sympathetic to my symptoms and lifestyle impairment. It's my understanding the gov't wants these exams because the med records are incomplete or conflicting. It's stupid, though. How can you not have conflicting medical records when not many doctors are educated about dysautonomia and all have their own opinions as to your diagnosis?! Best of luck, Melly

I applied for disability back in April of this year. The paperwork says that it usually takes 3-4 months, but it has been 6 months, and I still don't have a decision. I also moved recently to another state, so this may have had something to do with the extra time. I received a letter saying the state wanted me to see one of their "doctors" when I moved here to Georgia. Interestingly enough, I went to the appt. and found out the guy had a PhD in psychology!! What a hoot!! So, who knows what's going to happen? I called yesterday, and they told me I should have a decision by November. I agree with Melissa: it's a tedious process. Hang in there. Melly

Ya'll are a riot!! Even Theodore S. Geisel (AKA Dr. Seuss) would be proud, God rest his soul!! I had to share these poems with my son, who's still reeling at the pediatric resident from yesterday. It made his day!! Melly