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PattiL

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Everything posted by PattiL

  1. Hi Kate, You've come to the right place! My daughter is 21 yrs. old and has had POTS since she was 15 1/2. She also has a hard time with concentration at school. Are you having a rougher time in the mornings? Chrissy has to take all her classes in the afternoon or she wouldn't even be able to go to school. Have you seen a specialist yet? Are you on any meds? Chrissy is still having her meds tweaked somewhat. We see Dr. Grubb in Toledo, OH about every 6 months and he tries to deal with what's bothering her most at the time. Hopefully you'll find alot of answers to your questions here. Patti
  2. Has anyone been able to find a good therapist in Ohio that deals with chronic illnesses? Chrissy was so discouraged when she was first dx'd. The therapist that the cardiologist suggested was terrible, basically telling her that alot of it was in her head, blah, blah. She has since been able to tune out these types but would really like to find someone who understands. She's getting very frustrated with her bad days and would at least like to be able to get up at a decent time in the morning and try starting her day. We are seeing a sleep disorder specialist, just on the off chance that it could be something more than POTS. I'm going to see if he has any recommendations. As far as the physical therapy side, she's tried water therapy in the past and was getting so sick walking out into the pool area from the humidity that she had to quit. Any input would be appreciated. Anything other than just calling random psycologists and asking whether they deal with chronic illness patients? Thanks Patti
  3. Yea for Morphine!!! Hopefully that'll help Melissa's pain somewhat. Melissa, even though I don't post as often as others you are in my thoughts and prayers daily. Please get better soon so you can be in the comfort of your own bed. I'm hoping that your pain subsides and the morphine kicks in more AND that you won't be needing it much longer. Take care Melissa, Patti
  4. Hi Doctorguest, I still wasn't able to log onto that web page either. I went to the www.medsitecme.com and it listed different categories to click on, i.e., cardiology, pediatrics, etc., I went to 'psychiatry' and I believe I found the article you were referring to. It might be logged on differently for us since we are not registered as Dr.'s??...anyway maybe this link will work for others. Patti http://www.medsitecme.com/(jcwgvju0o1lafmi...escription.aspx
  5. Flop, Another Proactive fan here! Chrissy started using it last July and we took b/f and after pictures, a big difference after about 2-3 weeks. Only problem is when she's not feeling her greatest and doesn't do it every day, then the acne reappears like majic! It's pretty expensive (I think), but it's better than being on antibiotics, (which is what they put my girlfriend's daughter on--and for about 9 months straight). Patti
  6. My God, Emily, do you have a great memory or what!?! I seached through Leah's posts and found something from 2004! Sounds like she ended up not following through from the advise of her brother and boyfriend (both attorneys). Siimilar situation though. It's just gone too far. Hope to hear from anyone else who's thought of going through this or has. Patti
  7. Hi everyone, Has anyone (I tried searching and couldn't find anything posted) used a disability lawyer for anything other than getting SSDI? i.e., work or school related disability discrimination issues? Wondering if you've used one, was it worth it financially? We're having some issues, but don't know whether to pursue it or not b/c of the expenses. I feel we definitely have something, and I'd like to stand up for what we believe is right, but financially again, i don't know if it's going to be worth it in the long run. Any advise? Patti
  8. Hi Pat, Chrissy took it about two-three years ago and had a dystonic reaction to it and landed her in the ER for a day. In her case her head was slowly being pulled down to her shoulder and eventually she couldn't move it. It was like it was glued down. Very scary for her and for us just watching and not knowing what was going on yet. Her pediatrician at the time told us to give her some benydryl and head down to the ER. The benydryl starting working on the way down to the hospital (Rainbow) and after they gave her an IV she was pretty normal after about 8 hours after it originally started. Of course, not everyone will have a bad reaction--but nontheless, it wasn't fun for her. Patti
  9. Dearest Nina, NOT OLD!!! :o 42, OMG, i wish I were 42 again! Just incredibly knowledgable!! The poor girl's mother (me) has absolutely no memory, which i'd like to blame on being perimenopausal (which would be a whole other forum and topic--hahaha) except it's been going on since she's been born! OK, longevity might not be the right word--I just meant that you've had it longer than her AND the fact that you know about everything there is to know about POTS!! ANYWAY, b/f I get myself in anymore trouble glad to hear others have the same questions! Patti
  10. Doctorguest, I too would like to thank you for taking time from your schedule and caring enough to help everyone here. After most of what everyone has gone through with some of the medical profession, it's so nice to know that there are still some extremely caring doctors out there. Thanks again so much. Patti
  11. I'm so glad you wrote this post! There have been numerous times when Chrissy's been 'sick' and we didn't know what it was. We thought we were crazy! At least now since she's had her sinus surgery she hasn't been getting any type of sinus infections (knock on wood). Nina, it was so nice to hear from you, as I consider you one of the queens of POTS, because of all your knowledge and longevity of having POTS. It'll make Chrissy feel a little less crazy knowing that if YOU can't tell she shouldn't feel so bad about not being able to distinguish her symptoms. Patti
  12. Of those of you that have had a sleep study and needed a CPAP machine, how much has it helped with POTS symptoms and which ones. Has it helped with being able to wake earlier? General fatigue? Chrissy is so tired, but we've been so conditioned to all the Dr's relating everything to 'It's POTS" that we haven't checked this out yet. Any insights would be appreciated. My husband was diagnosed with sleep apnea a couple of years ago, and just recently I have also, so I guess the hereditary issue is definitely there! Thanks everyone. Patti
  13. ERnie, So happy for you that you're home and feeling better. Patti
  14. Hi Flop, Actually my daughter Chrissy, just had sinus surgery last month under general anesthesia. She also had a ton of sinus infections, so much so that she usually only had about two-three weeks off in between each one. We were sick and tired of most of the ENT's she saw and sick of all the antibiotics she was always on. She had a septoplasty, sinuplasty and a reduction of her turbinates. We had a letter from Dr. Grubb for the anesthesiologist and we also spoke with him prior to surgery. She did very well during the surgery and they even had to give her a slight bit of epi at one point. She was also given morphine in recovery and luckily didn't have any bad reactions to that either. The week after her surgery was not great fun, but she made it and was totally releived once the splints came out. It's been four weeks since her surgery and (cross fingers) hasn't had a sinus infection yet--and that's a record for her. Let us know how the surgery goes. Take care, Patti
  15. Maxine, My thoughts and prayers are with you and your family. I'm so very sorry to hear about your mother. Patti
  16. Wow, Thanks to everyone for your advice/opinions. Chrissy and I are very close, probably due to POTS, but I'm not complaning! She is not sexually active, which is why Dr. Grubb thinks it's the perfect time for her to get the vaccine. Her gyn is also supportive of her receiving it now. She just had her sinus surgery on Tues., (which so far has gone extremely well) so once she's recouperated from this I think she'll make the right decision. Thanks again, Patti
  17. Melissa, YEA!!!!!!!!!!!!!! I'm so happy to hear that you're home, feeling a little better AND were able to take a shower! God, that must've felt good! Anyway, welcome back, it'll be good to read your post again! Patti
  18. We actually didn't need a referral. Chrissy's first appt. with him was about 4 years ago, so maybe things have changed. Since you live in Ohio (I'm not sure how far you are from Toledo), maybe you could make an appt. with Beverly first and get in a lot sooner? Good luck, he's worth the wait. Patti
  19. This article is perfect timing for Chrissy's upcoming ENT surgery next week. Thanks. Patti
  20. My last post on birth control made me think about this vaccine. Dr. Grubb has told Chrissy she should absolutely get this vaccine asap. Normally I wouldn't even doubt a word of what he says, but after doing a search I have questions. There's a lot of information questioning its value. Most say the HPV virus is in your system anyway and this vaccine is a hoax. One of my biggest concerns is that of the side effects nausea and dizziness are at the top of the list. GREAT! Something Chrissy sure doesn't need. Have any of you gotten the vaccine, or know of anyone who has? Any opinions? Thanks, Patti
  21. Thanks for all your replies everyone. Since just turning 21, she just had her first pap test, so far so good. The doctor didn't mention anything about endometriosis, is there a specific test for that? My mother and I were in the same boat as Chrissy, terrible cramps and bleeding. Both of ours let up after we had children, although my bleeding has gotten really bad now that I'm heading toward menopause (will it ever end!) Chrissy did remove the Nuvaring, but who knows if that was really the problem. She started feeling really terrible about 4 days after insertion (dizziness, extreme nausea). But after removal she still felt crappy, so we went to the Dr. again on Monday and she dx'd her with vertigo.--no relief for this kid. She gave her some motion sickness meds. I'm hoping this doesn't last too long b/c next Tues. is her sinus surgery. Once she's recouperated from her surgery we'll go back to the gyn to see what she thinks. She'll probably want her to try the Nuvaring again. Thanks again for your tips.. Patti
  22. Hi Melissa, Our thoughts are with you daily. Please feel well, hope you'll soon be back on the forum and feeling better! Patti
  23. Hi everyone, Chrissy has extreme cramps and bleeding during her period so her new GYN recommended that she try the new Nuvaring. She was on a regular pill type BC before that and it didn't agree with her. We don't know if it's the ring making her so nauseous, or if it's one of her sinus infections. The Dr. said nuvaring shouldn't cause as many side effects as the hormone level is less than the pills she was previously taking. Has anyone else had this problem and if so, have you found a solution to the cramping? Patti p.s. I just read the brochure that came with Nuvaring again...side effects, Nausea, vomiting, sinusitis, headache... ARGH! o.k. still wondering, does anyone have any other ideas for these terrible cramps?
  24. Good luck Melissa--you'll be in our prayers. Patti
  25. Hi Mary, Just wanted to welcome you. I also have a daughter with POTS (21 yrs. old). We've known since she was almost 16 yrs. old. It IS great to finally know what you're dealing with. This forum is the best, we've gotten so much information from here that we otherwise wouldn't have. Go to the bottom left of the page where it says 'search topic' if there's something specific you'd like to find, and of course, keep asking questions! Take care, Patti
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