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    northeast ohio

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  1. Was told that my High BP was due to hormonal changes while going through menopause. This is new to me as I have always had very low BP due to my POTS. Woke up today with a headache and took my BP. It’s ranging anywhere from 157/101 to high as 174/100. Called primary got nurse on call, after answering all her questions I got an appointment for tomorrow early am. This is all scary new territory for me. She said If it goes up to 180 or higher go to ER. Has anyone else gone through this? Kim
  2. My daughter has been having similar symptoms to some of mine and her primary ran blood work which seems to point to some connective tissue disorder. She was referred to a Rheumatologist who would not listen to her long enough to hear her concerns or listen to her describe her symtoms. She left nearly in tears. Please if anyone has a referral to what type Dr or who she can see who is a knowledgeable and caring physican it would be greatly appreciated. She has to go to the Cleveland Clinic or one of its satellites due to insurance. Thank you in advance!
  3. My POTS Dr in Toledo referred me to a Boston Dr for possible mast cell activation syndrome and I need a diagnosis before they will see me. having trouble with my throat and tongue swelling, body pain and a whole list of uncomfortablness. Now on h1. & h2 blockers as a preventative but symptoms are still creeping up. Finally fought for an epipen this week at my primary. It's just so scary walking around like this. my Dr referred me to an allergist but won't see me to end of September, feeling like I'm getting on the same run around roller coaster I did when trying to get my POTS diagnosis. DOES anyone have a recommendation for a mast cell literate DR qualified to diagnosis me near me in NE OH? Having a really bad day and feeling quite depressed and scared. Kim
  4. Does anyone take these two medications together. I was just prescribed them as a med change and saw they were listed as drug interaction combo. I was taking metroprolol and celexa, now I am taking Wellbutrin, Celexa and Coreg. I get so anxious when I have a med change, especially after reading about drug interaction possibility. Thanks
  5. Maria C. Castells, MD Brigham and Womens Hospital http://physiciandirectory.brighamandwomens.org/Details/1728 75 Frances St., Boston, MA Lawrence Afrin MD University of Minnesota Physicians http://www.umphysicians.org/providers/UMP_CONTENT_482758.html Theoharis Theoharides, MD, PHD Tufts/Boston 617-636-6898 These are the three names I was given
  6. Have had some troubling symptoms over the past few months. I have been awakened by a tight throat and tongue swelling on two different occasions and have had to rush to drs for treatment. Benedryl and pepsid and a weeks course of prednisone each time. iching skin that goes away and chest and neck flushing that spreads up and down. Just came home from Toledo and it was suggested I see a Mast Cell specialist. There is one in Minnasota, one in Maryland and another in Boston. I am in OH. Has anyone had to be seen for this??? My POTS has been manageable for awhile now, but just had a lot of med changes due to my BP going from low to now too high, and feeling terrible. If anyone can PM me with experiences with specialist in this area. My doctor in Toledo said their are only three that they feel comfortable with, non near me. Has anyone had to travel far, out of state and how did it go?? Thanks, Kim
  7. Some days its horrendous and lasts for days and sometimes its just creeping in just enough to make me feel so run down and sluggish. Just want to know the physiological explanation behind this.
  8. Can someone explain why we feel like the flu is coming on, sometimes on a daily basis. I experience his often.
  9. I don't remember being bitten either but do have an idea when it happened. A family member has a farm and there are always ticks in the grass. We always found some on the dog and had to pick them off. A few weeks before I got sick I remember finding a huge one on my dust ruffle of my bed and assumed at the time it was one I missed when I checked the dog before coming home. I bet it's the one that bit me! She has since gotten chickens after an Amish neighbor told her they are great at eating them in the grass.
  10. I didn't show the usual bulls eye rash when I had Lyme, I think that's the main reason know one even thought to check me for it initially.
  11. No have not been bitten recently. I had it several years ago went through a year of antibiotic treatment. It had gone up diagnosed by cleveland cliniic for almost two years as they kept sending me for everything from inner ear problems to neurologists to check for ms even a psychiatrist! They sent me to a rhumatologist who diagnosed me with POTS, had all my POTS testing at Cleveland Clinic which confirmed POTS . during this time I met did my own investigation on my symptoms and took it upon myself to go to a Lyme knowledgable Dr in a neighboring state and after a western blot test was diagnosed with Lyme. Went through a year of treatment and travel. Became a patient od Dr Grubb who believes my POTS is a result of my Lyme going untreated so long. It's hard to know who to believe when it comes to all you read and hear about Lyme, the one fear I have is that it can lay dormant in your body and come back at a later time. I don't want to go through it again.
  12. Hello, Been off Dinet for quite some time but know you all are here when I have questions or just need a friend who understands to talk to. I have been having a three day headache, along with pain where my head meets my neck in the back, and achey joints and of course the lightheadedness. Does anyone else get this neck pain? I am so used to feeling not well and so many strange symptoms sometimes I just can't tell if what I am experiencing is just another POTS symptom or something else and I get scared its something terrible. Kim
  13. I will try to get my husband tested. We came from TN where ticks run wild, anything is possible. Thank you! Make sure you go to a Dr who is very familar with tick borne illness, it's even important that the dr uses a lab that regularly test for lyme such as IGENEX in CA. The Western Blot has to be done correctly and there is a limit to time between draw and actual test so even day of week done is important because of shipping. I hate to sound crazy, but after what happened to me I worry about this stuff.
  14. I had Lyme and didn't know it and it brought on my POTS, Tingling in hands and feet, severe joint and muscle pain, extreame fatique, headache radiating from where my head meets my spine.....Its a long shot but worth checking out? Kim
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