stellakitty

Hey all! i usually lurk, but when i saw morgan's post i used had to reply... i've actually been sent to a pysch hosp, because doctors deemed that i was suicidal (entered the ER with a paring knife protruding from my gut). the pyschciatrist at the m.h. decided i had a dissassociative disorder (multiple personalities), because i couldn't remember how the knife ended up where it did. i had a week long EEg last week, and when it came back negative for epilepsy, i was diagnosed with a stress disorder by a NEUROLOGIST!!!! i don't know where i would be without my mom, she tends to keep me on the positive side. we are able to laugh about all of the incompetent docs. lucky for you morgan you have husband who is the same way. keep you chin up, and things will get better! alexa

Hi Julia, EEWWW!!!...My daughter is going through this as you type, yuck-O!!! She has a good 6 inch surgical wound that has opened on both ends, like deep round pockets, they are oozing "green goo", double yuck! I took her to the dr. on Tuesday, he said he could not restitch these as the skin is "dead" and they will just have to reheal from the "inside out". He did prescribe an antibiotic for this, but her last dose is tomorrow...now the wound is starting to split in the middle, with the same type "deep, round nail holes". This wound is now 3 weeks old, in my "not-so-medical -opinion" should be done and healed. She was stitched with from the "inside-out" with the dissolve stitches, not glued at all as I have read, she should have been...She too, has EDS. I will also go forth to add...she had a very serious animal bite when she was 10/11 that required 9 stitches, that thing took four months to heal. Caution...Be careful with what you wish, one could certainly end up in the "LOONEY BIN". Been there, done that, ha. Angie

I use a wheel chair, and at first my mother was really upset about it, but now i can do some normal things for a 16 yr. old. My mom made me some covers for the w.c., and everyone always comments on them. try to have fun with your walker. is it a custom walker, that is a cool color. my wheel chair is a custom w.c., and it is bright purple! i hope that this walker will give you some normal aspects of life. Alexa

Wow, I logged on and just now noticed the "Informational Brochure" campaign, what a great idea! How long has this been on the site? Didn't notice until now...But, I'm BLONDE? So, I'm going to fill out the info for at least three idiot dr.s we've been to, who totally don't understand the concept of POTS...One of course, being the dummy that sent my child to the pysch hospital a couple of weeks ago...GRRRHHH!!! OMG, if you need money for stamps, LET ME KNOW! Angie

Stellakitty, the name of my daughter's (she has POTS, not I) Siamese cat. MEOW.

Hi Angela, I've been on this board since Oct 03, but I only have 22 posts, OOPS! You guys do such an excellent job of answering each other concerns & questions, I usually don't have anything to add, thus 22 posts. AND, I am the mom of a 16 yr with POTS, 90% of the time I'm CLUELESS!!! SO, I've "introed" myself again, nice to meet you! Know I am reading your trials and tribulations daily and I'm sending GOOD vibes!

Thanks... What is so scary about this is the reaction from the "medical community". My daughter ended up in a Pysch Hospital under a 72 hr lock down b/c she was injured and did not know how. The staff at the P/H released her after 30 hrs, they did not feel she was a threat to herself, the pyshcharist, (sp) at the facility, is trying to feed me some "dissociative disorder" pyscho babble. My daughter sees a counsler, every other week, she feels her main problem is depression, understandly so, as she is 16 with a chronic illness, not a MAJOR pysch problem. I have been reading this board for 2 years now, so I know most of you at one point or another have been told you need pysch care. Now that is crazy... I/she/we need some validation as to why she's "spacing out". My daughter does have an appt. with another neuro in a couple of weeks. She had a EEG about 10 days ago, it showed some abnormal activity, but nothing conclusive. Seems as if I spend most of my time chasing my tail for answers... Angie

Carmen, I don't know what this means. Could you please clarify? I have had sxs for five years including many T.I.A.'s. With the T.I.A.'s I experienced confusion, disorientation, and huge short term memory loss problems. Thank You Angie

Hi All, I have seen memory loss casually addressed at various points on the forum... Have any of you experience memory loss or "lost" parts of a day? My daughter has had four days within the past 6 months where she does not remember what she did. We went to the movies and out to eat, she doesn't remember doing this. I will add, she did not feel well that day, passed out in the restaurant as we were leaving. We could not get her to come back around, so I got her wheelchair out of the car and we "hauled" her out. Without going to into great detail, she had one of these days last week...She wound up with a serious injury, but does not remember how it happened. She has POTS, she has progressed to the point where she will now pass out everytime she stands up, so she is driving a wheelchair. She has days when her b.p. is so low our home machine will not read and she is on O2. I am wondering...Could the combo of low b.p. and O2 cause this type of symptom? OR, is this a result of a drug combo gone wild? She is on quite the drug mix, Toprol, Zoloft, Regaln, Neurotin, Advair, & Provigil. I'm not asking for any medical advice, just if you have experienced this type of symptom and have you been given an explanation for it. Thank You Angie

Hi Nina, My daughter has just finished her sixth dose of Lupron. I was afraid for her to start these injections because of all of the nasty side effects listed and horror tales on various sites. Alexa has not had any adverse side effects from the Lupron, I feel it has been a great help to her. She too was having some debilating pain in her lower left abdominal quadrant in conjuction with her hormonal cycles. We are talking about bed-ridden pain for 4-5 days every 3-4 weeks, this has subsided with Lupron. My pocket book is however, is having adverse reaction. The Lupron shots are 600 a month and my co is 120. Ouch.

Just goes to show you can't please everyone... I was wondering why you went with the metal bracelets also... They look cool, but despite the fact I have polished the edges with a fingernail file and coated them with nail polish, they still caused me and my two girls to break out. We are not allergic to latex. One of the girls flattened, (is this a word?) her bracelet out to make a book mark. Angie

Hi Kathleen, Kytril and Zofran are basically the same anti-nausea drug. My daughter has taken Zofran in the past, but now uses Kytril, insurance won't cover Zofran even though it's $2 less a pill, go figure. Anyway, she can't tell a difference between the two.

My daughter had her gallbladder removed at age 11, a hida scan showed hers to be nonfunctioning, filled up, wouldn't empty. She has almost no gut motility, cannot tolerate fatty foods, and just general gut pain. We mentioned the gut problems to Dr. Grubb, he told us people with ANS disfunctions usually have gut problems too. She had her appendix removed 6 weeks before the gallbladder. Yikes!

Hi Jamie, My daughter saw Dr. Grubb for the first time last June, he dx'ed her with POTS & joint hypermobility. He recommend the Procrit shots for her, he did say it would be hard to get insurance to cover these shots, it's approx. $600 a month. We went through a hematologist recommended by our PCP, it took three letters of appeal to finally get approval for the Procrit shots. So, there is hope! I cannot tell you if the Procrit injections are working. My daughter has only had three injections, I've been told it takes at least 6 weeks to start working. We don't know anything about the Cerefolin, maybe it wasn't recommended because she's only 15? My daughter had already tried Adderall when she saw Dr. Grubb, Adderall didn't work for her. Dr. Grubb did talk about Provigil for brain fog, she has been taking Provigil since mid July and likes the effects of this medication. Angie

Hi Dawn, I don't have dysautonomia, but I do have hyperpigmentation. I've heard most women get this due to changing hormones, sometimes it's due to overexposure to the sun in previous years. Myself, I'm in my early forties, a Texas girl, (think iodine & baby oil sizzling on the beach), my face is darker than the rest of my skin, like I put on foundation and didn't blend, yuck. You can get some bleaching creams, prescription from a dermatologist if you have a mild case, the creams haven't worked for me. Thursday, I'm going in for the heavy artillary with a laser treatment, see if that works... Interesting about the hair...My hair used to be stick straight, then started to grow in super curly from the back and underneath, that was 5 years ago. If I don't blow dry I now have lots of curl, so I just got my hair cut into layers I can wear it either straight or curly. Once again, it's the hormones talking. Angie

Hi Danelle, My daughter was prescribed Mestinon by Dr. Grubb, this did not work for her. She did not have any adverse side effects but she did not notice any improvement in her symptoms. Mestinon as I understand is supposed to stablize b.p., (she still had incredible swings) and to increase gut motility, nothing happened in that department either. My daugher has also been on Ritalin and Concerta for fatigue and brain fog, these are in the same drug class as Adderall, Ritalin made her too "jumpy" then a big crash and Concerta didn't do anything. Dr. Grubb did prescribe Provigil for fatigue and brain fog, she loves this drug. She takes 100 mg twice a day, she is able to make it through school without sleeping and her concentration is much better. We really enjoyed our visit with Dr. Grubb, I think he is quite a gentleman and a scholar, we were impressed. Angie

Hello... Has anyone had been approved by their insurance for Procrit? Did this drug improve your symptoms? My daughter 15, is passing out 2-6 times a day now, just about every time she stands up. She has done all of the other meds for POTS, and we've seen Dr. Grubb, Procrit is next on the list. I took her to a "hemo" 2 weeks ago to get the injections, but our insurance has denied the request, we have filed an apppeal. School started last week, she passed out twice on the first day, the district nurse called to say she can't attend school in this condition. I took her to the ER twice last week for injuries she sustained in these falls, she's now had a head ct, and wrist X-ray twice. Does insurance want to pay for all of these ER visits as opposed to a drug that could possibly help? My daughter really wants to attend school, they've agreed to let her attend in a wheelchair, this stinks. Thanks for reading... Angie

My two cents... I don't know Dr. A... Adderall is a controlled substance, in my home state this cannot be phoned into the pharamacy, you have to physically take the rx script in to have it filled. Angie

Michelle, Thank you for the article, I was able to us one of my husband's programs to get most of it translated. I've have spoken with the lady that runs the DYNA kids group, she tells me the siezure/convulsion stuff is very common with these kids. My daughter did start neurotin (sp) about 2 wks ago, she saw a neuro doc on Fri, he upped her meds. So far it hasn't stopped the activity but when she does have an event it only lasts about 2 minutes as compared to the 10-20 minutes before. Some people are so stupid...My daughter has an acting class, they do alot of standing. She told all of the teachers in the beginning of the school year about her condition and how she can't stand. For the past couple of weeks this acting class teacher has just decided she doesn't have a "real condition", she's lazy, he's been telling her to stand up for the skits, she sits when she gets really dizzy. This morning the teacher made her stand up again to do a skit, well, she had one of her "siezure" events. He was the one who freaked out and ran down the hall to get the school nurse! Once she finished her "event", she took a bow, all of the students applauded, then she went down to the nurse's office to rest. She returned to the class 20minutes later, she got hugs from everyone and a chair from the teacher. I am proud of the way my daughter handled this with her humor and the kids in her school are great. Just thought I'd share Angie

Dear Ling, What type of injections do you get for the shakes? My daughter's leg shakes just about all of the time. We did find a new pcp who is willing to help us. She gave her a script for nuerorotin (sp) to see if this will possibly help with the shakes. She took her first dose yesterday, said it calms a little and it did give her some relief with her gut pain, from a 8 to a 7 on the pain scale. Her new pcp also gave her a great nasal spray for migraines and levesin (sp) for b/t gut pain. This is a big improvement over the doc she was seeing before, he would not give her anything at all for her symptoms. I don't know what part of the country you live in, the dr.s here do not strike me as greedy, just ignorant. Angie

Thanks for the replies... We, (my daughter & I) just get so frustrated with dyautonomia because dr.s don't understand and we are just trying to cope with this illiness. It was the tech performing the test who told her she wasn't positive for POTS. She felt terrible the entire time she was upright on the table. She was having terrible tremors and thought her heart was going to pound out of her chest. We are going back to the cardiologist on Friday. She saw her pcp yesterday, she didn't know what to make of the TTT, but she did give her some neurotin (sp) to try for her leg tremor. Good news, she hasn't had a "seizure" in a week, yeah. I'm taking her to a neurologist next week just to be on the "safe" side. She has an appt with Dr. Grubb in Ohio in June. Angie

My daughter's cardiologist want her to redo the tilt table due to all of this "siezure" type of activity she was having. Last Tuesday, she stopped all meds (Florinef & Toprol) and she did the test yesterday. At a 70 degree tilt her bp actually went up, at one point to 160/103, her pulse was erractic, varing from 98to 180. Her hand and feet turned purple and swelled, she had alot of tremor activity. She did not pass out. Now she is upset because she thinks her new cardiologist is gonna say she's making up the dizzy all the time stuff, and since she "passed" this TTT no one is ever going to figure her out. I think she wasn't off of the meds long enough. Anyone? Thanks Angie

Carlacat, sorry about your bad experience with the ER. I don't have dysautonomia myself, but my 14 yr. old daughter does. I have written about our experiences with the ER in my posts "siezures with POTS". We were just in the ER on Monday, my daughter did get a bed right away, she didn't not recieve the appropriate medical treatment. You can talk to the ER personal until you are literally blue in the face, they do not understand POTS. I do find this interesting, the less educated population of the medical profession are open minded about dysautonomia. The school nurse is very accomodating with my daughter and has requested literature about dysatonomia. Angie

Hey... I called the cardiologist office this morning, they said it did not look like a cardio problem, all of her readings on the event monitor were good. My daughter had these "siezure" events all morning, finally went down the hill about 11:30 to the ER, because her new pcp wasn't in today. Well you know the drill, the ER dr. took one look at her and pronounced "panic attack". She ordered some bloodwork and (guess) Activan & Benydril (sp, the allergy med). i told her we had Activan at home, she dosed her anyway. Gee, what a wasted trip. Yeah, she quit having "tremors" (that's what ER termed it) because the dr. really juiced her good. We've been home 2 hrs & my daughter is shking like crazy. Top it off, i dropped my bp machine on the tile floor, now its totally busted. Maybe I"ll have some better luck tomorrow. I'm for sure gonna call Dr Grubb. Geez, I should have signed my board name as Eeyore, I feel like Winnie the Poohs moaning donkey friend. Angie

Thank you for all of your replies...The only dr. here in Colorado that I know of who specializes in dyautonomia is the dr. that dx'ed her, now he is gone to research for the CDC in Atlanta. There is another woman living about 30 miles down the hiway who was also his patient, she has POTS also, we're in the same boat. My daughter has a friend , also 14 with dysautonomia, she is going to see Dr. Grubb, her appointment is in April, that's a long time away... The new cardiologist that she has seen is her friend's dr. also. His office seems to have some knowledge of dysautonomia. The new pcp admitted to little knowledge of this condition, but is willing to play ringmaster with all of the specialists my daughter will be needing and she is more than willing to consult with the experts and learn. Today has just been cr**. It's 3 pm, my daughter has one of these episodes of convulsions, seizures, whatever ya want to call them every time she gets up to go to the bathroom. I ordered her to remain on the sofa last night after 3 episodes within 5 hours last night, every time she stands she just collapses. I'm just not going to deal with a weekend er situation, if you've ever been on a Sat or Sun ya know what I mean. Been there, done that with an appendicitis with her. Not to mention Er doc have no clue about her condition. I'm gonna call the cardiologist first thing tomorrow, hopefully he can help. I get angry when I read my own posts about the doctor situation. I'm upset because I let a know nothing peditrician try to treat her for several months. Then I get really upset because there were some days when I would actually start to buy into the whole mental health thing, when ya hear it enough from every doctor she sees. My husband is going to be so upset with me when he comes home this Friday. He will have been gone for 3 weeks and I have not mentioned a word to him about all of these lastest develops. I did not want him to have to worry about this. He would have taken the next plane back to the States, I don't want him to put his job in any sort of risk, being he has a great career, and new jobs aren't that easy to come by right now. Angie