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yikespanic

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  1. Well I finally got my Lyme results from the Western Blot. Two bands were indeterminiate and two bands were positive. One of the possitive was band 45 which the CDC doesn't include as a positive with the others. You have to have two positive out of the rest and mine were 2 indeterminate and one possitive. I really wanted either for it to be totally possitive or totally negative, not "MAYBE" or "POSSIBLY". The doctor told me that indeterminiate was a weak possitive and that means that I was expossed somehow and he gave me the choice of: Do nothing. or Treat. I choose to treat since he said sometimes after a course of antibiotics the Western Blot if taken again can change from ind to positive. Also the band 45 is a chance indicator of a co-infection and to be on the safe side treatment would hit both the lyme and the other. If after some time on antibiotics I progressivly get better, up and down he said, because you can herx and you feel worse sometimes before feeling better, then my symptoms will judge if it was lyme or not and follow-up testing to see whats happening. It all sounds a little crazy to me, but after talking to some other lyme patients, they had the same things happen and are feeling better. He does think that my POTS could have been brought on or worsened by all this and not sure if that will get better, only time will tell. I wonder what Grubb will say when I tell him all this? I was daydreaming the other day that it would be really great if Dr. House was a real person and he was my Dr. and he diligently treated me till he figured it all out and I got better. Oh well, at least I am getting little itty bitty answers instead of none at all. Kim
  2. Yes, and that was the worst for me. PANIC ATTACKS!!!!!!!!!!!!!! OH they are horrible. Even a suspensful movie could start my heart racing and I'd feel like I'd have to run feeling. If the rush happened in the car, I'd get all clammy and break out in a sweat and feel dizzy then the panic would rise up and go crazy. I thought I was having a heart attack. Since being on celexa this has died down. But still get bittsy ones here and there. They were worse when I was on beta blocker and florinef, I don't know why but it was worse. Hang in there. Take Care Kim
  3. When I first got the "virus" that they say triggered my POTS, it was the dizzyness and the spinning feeling that came on first and I was sent to a vestibular specialist at the cleve clinic who ran oohdills and oohdills of strange tests. All they could find was that they could put a vibrating device on left side of my neck and trigger a spin for me. It felt like I was going a zillion miles an hour in my head!!!! The explaination was that the virus attacked my ear balancing mechanism and sending signals to my brain that I was not level, and my neck was sending conflicting signals to my brain trying to complansate, thus the crazy dizzys. Of course this is my laymans explaination of the jibberish they tried to explain to me. I still have it happen and it is very upsetting, especially when you are driving and walking. It doesn't happen very often but seems to be related to when my ears feel blocked due to allergies or a cold or such. But then I've had it happen if I turn my head to the left quickly when my ears are feeling ok. This is one thing that delayed me being diagnosed with POTS, because when I kept complaining of feeling dizzy and graying out they kept saying it was this other problem. It wasn't untill a nice dr. took my BP and couldn't believe no one had taken it positionally before. WHY DO WE HAVE TO INDURE SUCH CRAZY STUFF!!!!!!!!!!!! Kim
  4. I voted for June 24th and May 21st but after double checking calander, I can only do June 24th date. Kim
  5. I just got a call back from church. They are waiving the fee for us if we want to use hall/room. The church is wheelchair accessable, it has a ministry to the handicaped and to children with disabilities so most all areas are accessable, the homelike parlor room is right off an entrance and the parking is right there so this would be the best room, plus it has a kitchen, and you'd be able to make tea/coffee etc.... Let me know if this sounds like a good idea? May is kinda booked up, but June on has many open dates. It gets used for wedding/baby showers alot. The church's location is: Parma Heights Baptist Church 8971 West Ridgewood Drive, Parma Hts., Ohio 44130. It is just West of Parmatown Mall (across the street from Walmart with an entrance on Ames as well.) If it's on a weekday we have to be out by 9:30, cuz custodian has to get home. If it's a Saturday it doesn't matter, I'll just get the keys and take care of clean-up. I don't know how to, but maybe someone can take a poll as to location, best day of week, dates, times that are best... Kim
  6. I asked our church about using a room for a get together. They said it would be ok. Usually there is a $75.00 fee to use the Parlor, a nice homelike room with a kitchen. There is also large room that would fit 20-25 people thats no cost. They are going to call me back tomarrow because after I told them what I wanted it for they might waive the fee for us. I'll post when I find out. Kim
  7. Hi Melissa, Patti, I remembered it was being bounced around a few months ago and got excited, and wondered if anything had ever come of it. I might be able to get a nice sized room/smalll hall for a meeting at our church at no cost? I will check on it on Monday. It's in Parma, across from Parma Town Mall and theres quite a few restraunts close to. I'd also be interested in a more long-standing support group if anyone else is. I don't know if I'd want to organize everything by myself either, maybe a few of us could do it together so it wouldn't be all on one person. I don't know how I will feel at any given day lately. I don't want to step on any toes either, I just want to jump in and be of as much help as I can. Kim
  8. Anyone interested in a get together of us in NE Ohio? Maybe meet at a restraunt or ..? Any ideas? Kim
  9. Had my follow-up appt with Dr Grubb's nurse pract Bev yesterday. She is just as nice and through as he is, and the wait to see her was only 10 minutes. She ordered the catecholamine blood test, and they were able to do it right there at the Lab. I had to lay down for 30 min, they drew blood, then briskly walk for 30 min and then have my blood drawn again. What exactly will this test tell them? All I could find was it might help find tumors, (scared me). On a good note, the trial of celexa has helped me. She upped my dose alittle and were going to see if it helps a bit more. My BP isn't shooting up, the racing heart still happens though not nearly as often and not as long in duration. My BP is still low but I'm not see stars and getting all the nasty other feelings as much. My anxiety levels have dropped and it is a bit more managable. My hopes are up. My fatigue is still a problem and we are going to work on trying a new med for helping me sleep that just came out that doesn't have any side effects. Hopefully with some better sleep the fatique may improve. I sure hope so. Kim
  10. Mines close, the 18th at 1:30pm Kim
  11. My son is having one done this month and I think I'm going to ask to have one done to. Something has to be going on. I wake up so many times during the night and am so tired when I get up.
  12. http://ajrccm.atsjournals.org/cgi/content/full/164/7/1242 Sleep-disordered Breathing and Hypotension CHRISTIAN GUILLEMINAULT, JOHN L. FAUL, and RICCARDO STOOHS Stanford University Sleep Disorders Center, Stanford University, Stanford, California Kim
  13. I filled out all the financial aid forms just to see what would happen when we filled out my daughters. I checked and I got full financial aid! I want to go back to school so bad but I am scared I will not be physically up to it. How many of you work full time or go to school full time and how do you manage it? It's been my dream to go to college and I want to do it before it's to late and I am an old lady whinning that I didn't do the things I wanted to do in life. It's just this darn POTS. Someone told me that if you have an illness or disability you could have special accommodations? Anyone ever do this and did it help? Do you have to be labeled disabled to get this special treatment? Do you just go to your doctor and have them write you a letter? When I got sick in 04 and was taking a class, I barely made it from the parking lot to the class! A few times I never made it past the parking lot. Just sat there and looked at the distance and felt so weak I just drove home. Got any ideas? Kim
  14. Radha, I just wanted to let you know that you are not alone. Since POTS the worse symptom for me has been the anxiety. Some of it started out as just plain fear of not knowing what was happening to me before my diagnosis. My big fear became going to far from home. As my first symtoms of POTS were making driving difficult. I had a 20 minute drive to work, which was always a great thing for me, as I worked near my favorite area of a Park. The last 10 minutes of my drive was through a somewhat isolated area and I was so afraid of the feeling of I might pass out and being alone that it became to much for me. I had severe dizzy spells and weakness and all this caused me to quite my job. I got so bad, that last summer I rarely drove myself anywhere and had countless horrible panic attacks. Xanax was a godsend for me as it helped me when I felt panic coming on and it made driving at least somewhat bareable. So was being diagnosed and finding out that most of my symptoms were just all this adrenaline racing thru me and learning to get past the feelings and not to become afraid. As it was the fear of the fearful feelings that were fueling the panic and continueing the cycle, and me avoiding things only escallated matters. POTS has sensitized me considerably. My alarm clock going off can create anxiety that may take me hours to come down from. I don't do well under stress and I notice my body responds over exageratingly where i didn't before. The best thing I did for me was learn all I could and still try to about POTS, I found a good psychologist who understands and has taught me stratigies to handle things. Your fear feeds your anxiety. Learning not to fear the feelings anxiety brings on breaks the cycle and helps you to better cope. I still have anxiety, not as bad as several months ago, but now I have at least knowledge that it can't hurt me and it will pass. It's also good to have a good friend or two to talk to. Take it slowly and don't be to hard on yourself. Give yourself time to adjust and get some good rest, it really helps. A good author, which has really helped me is Claire Weekes, there are some tapes by her also, that are very informative and comforting to listen to. Many times I have taken her tapes and listened to them in the car and they really helped with the anxiety and fear. She explains anxiety and how to overcome it. In Feb Dr. Grubb started me on celexa, a very small dose, I think it has also helped reduce my anxiety. I do hope you will be feeling better soon. Take Care Kim
  15. Melissa, I am so sorry your in the hospital, I am praying you'll be feeling better quickly. Take Care Kim
  16. Have had a very bad week. Went to visit a friend last Thursday and felt horrible and had to leave early. Then started my period Sat, early again. Been starting 3-4 days early for a few months? I have felt much worse than I usually do, fatigue wise. Extreamly fatiqued! Almost can't function. Finnally worked up nerve and called Bev, Dr. Grubb's nurse. She said it was probably my period and that i should be feeling alittle better my mid next week and if not to call her back. Why does my period make me so fatiqued? Do you all have this happen to? Is there anything I can do to help this. Can you do anything in the days before period to help curtail fatique? Kim
  17. Just ran across this interesting article. http://news.yahoo.com/s/space/20060323/sc_...eatamericanmyth So now it seems I will live longer without all that sleep I am trying to get! LOL I hope they are right. Kim
  18. As someone who has had horrible migrains since about 16 and after many trips to dr and er, finally a few years ago went to a neurologist and after seeing me started me on an elimination diet. As soon as a processed food was added I had a migraine. After much testings of foods it came down to MSG, all added nitrates, some colorings and diet sodas. He told me MSG is a neurotoxin. You have to watch eating out, reading labels, calling companies and checking there ingrediant lists... It makes eating sometimes a drag. I crave lawsons chip dip! But just have to watch everyone else eat it! They hide MSG in everything, even yogert. WHY YOGERT? who knows, it's so crazy. Organic is where your pretty safe, but it's so expensive. It gets me so made when I get a migraine after eating something that was suppossed to not have msg in it but I can tell just by my symptoms that it has it in it no matter what they say. Same for artifical sweetners he said to stay away from them. Kim
  19. I wonder what happens in our body to give us a good day? And why it can't just stay there. At least I know my body has the capacity to feel normal. If only I knew where the switch was that would keep it there I'd duct tape it in the right position! Bewildered and dizzy once more but still kicking Kim
  20. The wierdest thing happened last night...I SLEPT LIKE A LOG!!!!!!!!!!!!! Oh how wonderful!!!!!!!!!!!!!!!! The other great thing is that my son doesn't have to be at school till 10am all week!!!!!!!! I don't know if it's I knew I didn't have to get up at 6:20 and didn't have that waiting for the alarm clock to go off feeling or I just had a "normal person" LOL glitch go off. Regardless I felt clear headed and non dizzy till around 3:15 this afternoon. The POTS feelings are creeping back up now but what a blessing today was. Maybe my celexa is finally starting to kick in cuz I had a very stressful weekend and I managed to still have a happy attitude. Thats gotta be the med cuz I havn't felt those feelings in awhile, especially during stress. Or it could be talking to Belinda on the phone, she's great to share and laugh with! Anyways just though I'd share some positive news. Take care Kim
  21. I found that gateraide adds pounds, thats the drawback I didn't like. This sounds gross but I actually have gotten used to it and it's not that bad. I buy a product called bio-salt. It is a mixure of minerals instead of pure sodium, more like the consistancy of your own tears. I add it to my water or other drinks and it isn't as strong as regular salt and doesn't upset my stomach either. I put it in all our salt shakers and everyone in my house is using it and like it. Kim
  22. Just wondered how many of you are doing the night owl thing? Kim
  23. I've stopped florinef and metoprolol in early feb and started celexa on feb 15th. I was having this while still on metoprolol and florinef, I hope it's not the celexa, I have high hopes that it will be the one to work. So far my anxiety level is down from what it was before. Thanks for the ideas. Kim
  24. Any ideas. I keep waking up at 3 and 4 am every night. It seems I lay there trying to get back to sleep. I know I finally do because my alarm wakes me up and I am so tired, it feels like it's the middle of the night. If I am so tired, why can't I sleep when I am supposed to. I hate it also because I feel wierd when I get up in the middle of the night, a little scared, my mind feels like it is racing a bit, it's like my half my mind is caffeined up and flying and the other half is dead tired. I need some sleep Kim
  25. Hi, Just a thought, it's past 10am have you eaten anything? This adds to my am symptoms and sometimes after I eat I feel a little better. Some protein and a carb together and a good drink of water. I do hope you are feeling better by now. I have many random really bad days, and I don't know what causes them. It's frustrating I know. ((HUGS)) Kim
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