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yikespanic

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Everything posted by yikespanic

  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
  15. Its a long shot but here in NE Ohio we have a yahoo group called http://groups.yahoo.com/group/FreeReCyclingCleveland/ its a yahoo group where you can post something you will GIVE away for free, and you can post that you WANT/NEED something for free. When I dont have use for something or the kids outgrow something I post it and people reply and come and get it. Maybe there is a yahoo FreeReCycle group near you? Post your illness and need for a bike, there are alot of nice people out there, who knows maybe someone has a used one just sitting around collecting dust. Craigslist.com is another great site! Unlike ebay the people live near you. Another idea that I did was I joined a new fitness center opening up all over called Fitness 19. Here is there Georgia locations: http://www.fitness19.com/locations.aspx?state=GA They have VERY low monthly memberships, I pay 9.00 a month. There was an initial membership fee but you pay 9.00 a month forever after that. They have recombant bikes. I have been going 3 days a week for 4 months now and I really like it. I have been working on my legs using the leg press and two other leg machines that you sit while using and I really have noticed a difference. Legs are inportant as the more muscle mass you have the better blood is pumped back up and doesnt pool. Also I added my kids, who go with me, and I pay only 7 a month each for them. They let me add a non family member after that at 5.00 a month. Maybe if you find someone who is going you can be added on to their membership and pay them, thats what my kids and their friend do on my membership. Plus when you have a buddy you have the inititive to really do it and someone to drive when you don't feel well. Kim
  16. Panic attack was one of the first symptoms of my POTS, Out of no where it would just begin and escalate to the point I though I was dieing, hyperventalation, cold sweats, Very intense fear, heart racing....When finally I had my POTS diagnosis the Dr at the autonomic clinic at the Cleveland clinic explained it to me as my body reacting to the drop in my blood pressure in a very dramatic way that too much adrenaline was being released because it sensed I needed it NOW, causing the symptoms of my panic. They tried Xanax and was a life saver, I put one under my tongue and I could have almost immediate relief of the attack. But it did not seem to help stoping them from comming and the attacks were affecting my quality of life, I was almost housebound out of fear one would happen while I was out. When I became a patient of Dr Grubb he suggested we try Celexa as it would help curb the attacks. I started out with a very baby dose and worked up over time to 20 mg a day. I used my Xanax in the beginning if I had an attack while waiting for Celexa to kick in. It took a few months but it really did work. I have not had a full blown panic attack in so long. I still can feel some of the wierd feelings when my pressure drops but It doesnot grow into an attack. Everyone is different and I am no expert, but this is my experience with Panic. I hope you can find an answer to helping yours, I know how horrible it feels. Another thing that helped that I found on my own was some tapes by a woman named Clair Weakes, spelling?, she explains the whole process of panic and attacks and helps in a very calming way discribe how your body is reacting and how best the understand the process and help calm yourself. They really helped on bad days. Kim
  17. Ice cold watermelon salted is the best.
  18. I haven't posted in quite some time, as I have basically been feeling pretty good lately. My symptoms have been there but not as bad as in the past. I've been able to work full time for about 2 years now and other than flair ups here and there have been managing pretty well. That is untill several weeks ago when my mail order pharmacy switched my Celexa to generic. Dr forgot to say DAW when it was called in and I am still waiting for the mistake to get fixed. I have to use mail order for stuff I take all the time and it is a PAIN. I am going to call today and see if they can call me in the Brand name at my local pharmacy to hold me over till mail order arrives. But I just wanted to know if anyone else has had this happen. I looked up online what the withdrawl symptoms are and it feels just like that. I ache all over, have tingly feelings and what feels like head rushes, my POTS symptoms are creeping back dramatically, I can barely get out of bed, grey out feelings, heart racing... Has anyone else had this happen???? I remember way back when I first started celexa and I had generic once and I felt really creepy and thats when Dr started always writting DAW so I wouldn't get it again. But this is beyond that feeling. I had to call off work today and I guess I am just getting myself all worked up and scarred. Kim
  19. I was always afraid to fly with my POTS, but this past May I took my chances and my husband and I flew from Cleve Oh Airport USA to St. Thomas USVI. The trip there went fine, but the trip home was a little exahausting and my feet swelled and hurt for the week after coming home. We flew home on a Sunday and I went back to work Monday. I crashed and called in sick for three days to recoup. But I am glad we went, It was WONDERFUL to just get away from it all for two weeks and I did just fine at the beach every day and the heat was manageable. I hope you have a nice trip.
  20. I'm one of those who had lyme and didn't know it. I was treated with antibotics for about a year. I believe that's where my POTS origionated. I am much better that I was before treatment, but I am left with my POTS. Kim
  21. I have one of my twice yearly appts with Dr. Grubb tomarrow morning, anyone else going to be there?
  22. Just thought if anyone is having an appt tomarrow on Tuesday I have one at 10:00 am Kim
  23. What kind of POTS symptoms does he think are caused by migrains? I had a very scarry episode a few years ago, I felt a funny feeling in my head, not a headache, and I got out of bed, went into the bathroom to get a drink and when I looked into the mirror the left side of my vision was all fuzzy and silvery colored. I totally freaked out and thought I was having a stroke. I woke my husband up and by the time I turned on the lights inthe bedroom both sides of my vision were like this and he called 911. by the time they got there it was beginning to go away. When I got to the emergency room and explained what happened the doctor said I had an occular migraine. THey don't have theusuall pain associated with migraines. Turns out we linked caffeine to the trigger and thank god it wasn't a stroke but it scarred me so badly. I know exactly what you mean by not trusting everthing every doc says. If I did I would have never been diagnosed with my POTS or my Lyme desease. Kim
  24. I totaly agree, I don't know how I'd get thru the anxiety caused by my POTS without my medication. I was almost totally housebound with the fear of having a panic attack away from home. Mine seem to be caused when my BP drops or I get a surge. It was like someone just flicked a switch. I'd feel totally normal and then boom, I'd feel a little light headed and then I'd break out in a sweat and totaly panic feelings would happen. After begining my med which was a very small dose of celexa I still get my pots symptoms although not as bad as before but they do not trigger anxiety and panic. I'd talk to the doctor treating your pots and see what might help you. I went to counseling for almost a year, once every week. I learned the panic would not kill me but it didn't stop it from happening. I could use relaxation and breathing to get thru it but it still made my life misserable. I have a greater quality of life now and can better cope with my pots and my life in general with out having to deal with anxiety. Don't settle for staying in this pattern, take the first step and talk to your pots doctor. I hope you are going to feel better soon. Kim
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