Guest guest Posted January 7, 2011 Report Share Posted January 7, 2011 Sounds like she needs to see a neurologist who is a pain specialist. The headaches could be " coathanger pain " that is related to orthostatic hypotension (severe drop in blood pressure upon sitting up and upon standing). Does she have OH? > > Thanks to those who replied to my first post. Haven't had time to reply...I know you can all relate. My mom was just dx'd and we are still in the the learning stages. She lives alone, 1500 miles from here. She is doing reasonably well. Today she is telling me she has significant pain in her spine from her neck down to her tailbone. She thought it was related to a rotator cuff tear/bone spur that she has but her orthopedist says it isn't. She can't get ahold of her neurologist. She is calling her primary now. > > Pain hasn't been an issue per se, but she has had fybromyalgia in the past. She is starting to get a headache. Related or not related to LBD. She isn't on any meds yet and not sure what if anything she can take for pain at this point or if she needs to be seen by someone ASAP. She is going to go to her primary, but not sure that is the right place or not. The one thing I have picked up from reading here is to not take any meds without checking first. We'll need to know what to do to manage this " episisode " as well as how to confirm that the ansesthesia and pain meds for upcoming rotator cuff injury. > > Thanks. I appreciate the information that is shared on this board. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2011 Report Share Posted January 8, 2011 Hello Barb's Daughter It is very hard to take care of these things when you don't live close to your mom. I may have missed some of your posted info but does anyone in your family live close to her? You said she was recently diagnosed but is not taking any meds. Was the dx LBD? Which Dr made the dx? It seems unusual that the Dr didn't prescribe something like Aricept or Namenda immediately with a dx of LBD. Aricept elimated my mom's hallucinations quite quickly. Anyway, since you live so far away from your mom and her doctors I would recommend signing the appropriate paperwork with all her Doctors which will allow them to discuss her medical issues with you. She will have to sign the papers also. I live in CA and we have all kinds of HIPPA rules regarding privacy etc. I would also recommend signing this paperwork with her insurance companies also. If she is attending these Dr appointments alone you cannot depend on her to tell the story straight, reveal the whole truth, or not make something up. Since the beginning of this journey with my mom I have had to slip the Dr a note giving him an update with every visit. If he had been depending on my mom for info there wouldn't have been one shred of truth in anything she had to say. It is also very important that all of her Dr's have all the info regarding her LBD dx and in some instances you will have to educate them regarding which meds she can or cannot have. You must be very proactive. Yes it seems that you are going to have to somehow get her closer to you. It is all very stressful. When I look back on all I have had to do regarding my mom's condition I sometimes don't know how I got through it but we must forge ahead and do what needs to be done. I wish you luck. Don't be afraid to use the group there is so much useful info here. Hugs to you & Mom Ginny dx 2006 recently gone to board & care home = Quote Link to comment Share on other sites More sharing options...
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