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tinksinflight

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  1. Hello, Oh how sorry I am to hear that you have had this also.. I have had it happen ..Man was I scared, I had never had this happen and wasn't sure what was going on...I have a very weak bladder.... Maybe because I've had so many kids..But never messed my self until I was plagued with POTS. I have only experienced it 3 times in 2 years...If that helps any,,And another thing that I should tell you is ...New medications are what had caused it to happen to me on all 3 occasions...Might have just thrown my system way out of it's normal pots range..I would tell your Dr. though..And keep track of dates and so on ...Maybe you will pick up on a pattern...Hope this helps...And hope it stops..We have enough crap to deal with...If you know what I mean..
  2. Wow. A classic symptom for me...I have this every morning and every time I wake through the night ...I don't know what causes it yet I have an idea..I believe that it has something to do with my nervous system being so relaxed while I'm sleeping and then suddenly WHAM ..It has to function when it isn't quite ready and it feels like it's trying to over compensate for the change that has taken place.. What I do most of the time is keep a 20 oz. bottle of water by my bed and before I even get up in the am. I stay put and drink it down, then I slowly sit up and give my body time to adjust to the change in blood flow... Some days are worse.... Hope you find something that helps...
  3. Futurehope, Boy do I know what you are saying... Oh my, can I relate...In the past week we have had 3 family reunions...Not only did I feel like total crap ...But I was expected to bring a covered dish to each event and wear a smile ..These were all for my husbands side of the family...Just to add as I vent a little...excuse please... They see me and think that I am normal and that I can function on all levels....How wrong they are..I was dying...I had several symptoms coming and going through out the entire event each time we went,,,I had tried to prepare myself by loading up on water and salt....I tried to get a good nights sleep and well, that never happens...And I tried to use the klonopin to mask many of my symptoms,that just made every one there more tolerable..the noise and stuff..I must say I was totally over stimulated...But now that I am home and all is done..I am kind of proud of myself for going and pushing myself through it all..I am no doubt exhausted...And ready to hit the floor... I hope that your husband and you can try to work something out that better meets your limits...I know that if you could...You will enjoy the fact that you did it...much more after the fact..Does that make any sense? Best of luck to you...
  4. Greetings All, Once again I've come to the conclusion that this is nothing other than a long and awful roller coaster ride that may never end.. I had went to see Dr. Abdallah on Friday...He was so concerned with the fact that I have been non responsive to all of the medications that he has tried and says that he has exhausted his methods ...within his knowledge..And is sending me to see a Dr. Robert Hoedtke?not sue about spelling due to Dr. A.'s handwriting..Anyway, He is in Morgantown Wv. Only about 3 hours from here and has much more research knowledge ...He has been treating POTS with this injection that I know nothing about, BUT....Dr. A feels as though I would benefit from...Speaking of the Sandostatin/Octreotide... Anyone with any information PLEASE....PLEASE....HELP..
  5. Jessica, I am going to miss you so much.... I wish you nothing but the best...Always.. I know that in the past year since we've met you have made such a difference in how I look at this whole POTS thing..For all of the advice through the pregnancy and for removing my fear..You are an angel.. You are going to be a success at everything that you do, and I feel that I have been blessed, just knowing you.. Thanks for the hours of conversation and for being a friend. Good Luck in everything that you do..Watch in the mail for this package that I am sending you..It may be soggy with tears but...I'm sending it anyway... Talk to you real soon....Bye...
  6. Futurehope, Thanks for asking...I have been seeing Dr. K for 2 years now, Dr Abdallah is closer to me so I see him every month while I may only see Dr.K once every 3 to 4 mos. Both of them have tried several medications and to this day have had both call in several scripts for me to try...Usually these are only a 10 day supply due to the hypersensitivity...I know within 2 to 5 days rather I can take it or not..There usually isn't a problem with getting them to do this and I will indeed discuss this w/ Dr. A when I see him next month..The point of the matter here was....Was that when I was asking him to allow me to try this Adderall, He gave me the sense that he didn't know or maybe hadn't heard that Dr. Grubb had perscribed it to some of his POTS patients and that some had found it to be rather helpful.. None the less, The real question here was "who is Dr. Abdallah"? Sure hope Ernie that you give him a try if you have no one closer to you that treats POTS.He is a great man with a wonderful background in pediatric cardiology,also treats people with dysautonomia... Again, good luck to you Ernie..
  7. I welcome you also... Just to say that I hope things get better, And that I agree...I also have had no luck with medication and can't imagine how I would feel if I had. I have cahnged my entire life around to meet the demands of my body...I start my day with a liter of water..this I drink before 10 am...then start on my second liter...I stay far away from sugar and most wheat products. I consume alot of salt, celtic sea salt to be exact , and I get alot of rest. I don't feel good...yet I'm not feeling like I did when this all started 2 years ago..I thought that I was dying..I never over extend myself...I have learned my limits and work with them.. Have faith in your self and try to keep a positive attitude...Things will hopefully improve..And something else that I found to be helpful... No matter how bad I feel when I first get up in the morning, I force myself to stay on my feet and keep walking around..Helps to get blood circulating...then I proceed with caution through out the day..I do pass out sometimes so I have to watch for the signs..yet...I still feel better if I am up moving about when I can..And I refuse to allow this to completely control me.. By the end of my day I have had 3 liters of water...Usually eat very lite meals...with alot of salt..And never drink anything with caffine...That just makes the tachycardia worse.. Good luck to you, and keep in mind to that no matter what you try ...it may take some time to see the results...
  8. Wow, I also see Dr. Abdallah... I have been seeing him for a year now...He is a very compassionate man with alot of understanding in the area of circulation...But as far as POTS goes...I have to say that there have been several occasions where I have had information that may have been helpful with treating my POTS...(Because I have been a tough case for him, I am hypersensitive to everything...even tylenol...)And found that not only did he not know about this type of treatment nor did he want to explore it with me.. I have also been frustrated with the office staff not returning my phone calls and have waited days for them to do so and ended up calling them back even more frustrated than before.. What I do realize is, is that he overextends himself, he is such a great person that he takes his time with you, He makes sure that you have all questions answered to the best of his ability...He would go that extra mile for any of his patients I am sure..He spreads himself so thin that I at times worry more about his health than my own...and stress this to him...I went for an appointment earlier this month and was not doing so well,every medication that he has tried has only made my condition worse So I was so upset...not with him however, but with this stupid POTS...That I cried...I just want to feel better...and like so many of us...get so annoyed at the fact that there is only so much that can be done...He sat with me and expressed his sympathy by giving me a hug and encouraging me to keep faith...So I felt like crap, atleast someone understood and took the time to listen.. 2weeks later I was here on the fourm and read about someone having a pretty good outcome with Aderall...This was new to me so I started to research it a little... I found that it was used for ADD and really wanted to try this...Knowing also that the person who had tried this was seeing Dr. Grubb...I called Dr. Abdallahs office on Monday am. and talked to one of the girls in the front office...I told them everything that I just stated here and was really excited about having him call in a script fpr me...She took my info and said that she'd have him call me back... 2 days went by and nothing....I called on that 3rd day and said can you please tell me why I haven't heard anything??? Well , she said, I gave him the message and told him to call...she then said that she would catch him between patients and have him call...I said great....Thanks...Still no call...So on that 4th day, again I called... This time he wasn't in yet and wouldn't be in for a few hours..So I asked if they would have him call before he started to see his patients...She said she would try...Good enough for me..I again waited...Nothing ...The next day was Friday..I knew he'd be in Sterling so I called ...Knowing that he is usually a little late, I waited till 10:30..When I called this is what I was told....Dr. Abdallah said that he cannot call in a script for this because this Aderall is not for POTS, it is used to treat ADD... I said I knew this yet I have read about it ..BLAH...BLAH...BLAH...... and look, I just want to talk to him about it...This didn't happen...Anyway..I have another appointment early in Aug. Thank goodness...I will discuss it with him then... Sorry to go on so but my experience is...And I have gone to and still do use Dr. Khurana in Baltimore..... Everyone knows what they expect and what they need out of their Doctors. Always have a back up plan....Just incase you find that it isn't working out.. I feel very confident that if you decide to see Dr.Abdallah that you will be pleased with him..Just be patient..As much as you can anyway...and keep in mind that he has a very heavy caseload now and that there may be times that you feel as though you aren't getting what you need....Just as you would anywhere else you go to get treatment for something of this complexity...And know also that it's just as frustrating for them as it is for us... Good luck and hope you have a great experience...
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