dizzygirl

Hi all!!! Hope that you are all feeling atleast half way human! Well I just got back this afternoon, from pittsburgh, I have been there all week, seeing docs, and getting alot of testing done. Well I will start with my MRI results. I had an MRi done on wednesday, and they said that the brain its self looks good, but that they "saw" something on my pituitary gland, and that they could only get a look at it from one angel, so they are "uncertain" of what it is. And will have to repeat the MRI, and see if they can get a better look at and try and figure out what it is. I also saw my cardio doc, he spoke with Dr.GRubb, and they increased my dose of propranolol, and changed the timing that i take the medication.. in hopes that they find the right dosage comb, and the best time of day for me to take my meds. I had a QSART test done also, and the neuro, doc said that i definatley have autonomic problems... they told me that my BP dropped when they stood me up, and it took over 2 minutes for my body to adjust to the change in pressure and HR. I talked to the doc about what happened to me a fews weeks ago with the twitching and difficulty with speech, and she told me, with the number of times that i blacked out, that my BP was more then likely to low, and that my body went into convulsions, that that was how it was dealing with the constant low bp, and lack of oxygen to the brain, and all that jazz. they repeated the EEg yesterday, to see if maybe my brain functioning has returned to normal, or if it is about the same.. the EEG that I had done in 2003 showed slowed brain functioning, and then the one I had done 2 weeks ago, showed the same thing, so it will be interesting to see what this one shows. I should get the results sometime this week. I had a tilt table test done friday, I freakin' hate those things, they make you feel so crummy... my Hr went up high aout 160.. i did not pass out though, thank god! I went back to my room, and slept till the next morning.. I was wondering, they could not get an IV access, it took the 7 trys and 5 different people, before they finally got an IV into me, and they ended up getting it along side my thumb of all places... and on wednesday, it took them over a 1/2 an hour to get an iV, they put that one just under the palm of my hand in my wrist, Boy oh BOY! did that hurt!!!!! Do you guys have finacky veins too? Well they are sort of peicing together what is going on with me, we should hopefully have some more answers in the up coming week. Since, I am allready on, I had a horrible day today.. I woke up about 6 am this morning with really bad tummy pain.. then diarrhea.. and oh my god the nausea was SOOOOOOOOOOOOOOO horrific! i started throwing up this morning, it was horrible, the force of the vomitting is just so intense...I had to leave the hotel at 7;30 this morning, and i saw so sick, I didnt think that Iwould make it home... I had a 3 1/2 hours bus trip ahead of me.. plus waiting time at the bus station.... I was so yucky and potsy feeling today...YUCK! the bus ride home was not cool to say the least..I needed to lay down in a bad way.. I recined the seat back as far as it would go.. but that is not far... pulled into the bus station and that was allshe wrote folks! It si almost 10pm and the tummy pain, nausea, diarrhea, and throwing up is just now starting to calm down.. I get like this every so often on the average of 3-4 times a month with bad spells like today.. the nausea is a daily thing.. and the diarrhea that is pretty often too.. I am curious what do you guys do to help feel better??? any suggestiond would be greatly appreciated. I tried the ginger ale..i couldtn keep it down.. I was so thirsty.. I couldnt even drink water... I came home and slept... Somethimes I feel like i am never going to feel normal again! I really hate how this potsis efeting my life... AHHHH!!!!!!! thanks for listening!!!!!!!!!! Linda

THANK GOD!!!!!!! I'm not alone!! I'm not going crazy after all.... Nice to know that others are feeling dopey like I do! LOL Hope you all have a wonderful holiday.

Hi folks... hope everyone is doing ok.. I was wondering, do any of you ever wake up in the morning and feel like you have been drugged? Like really groggy and lathargic? can barley hold your eyes open or lift your head upoff the pillow feeling? I wake up sometimes like that, this morning, and seriously I felt like somebody had drugged me. Most of the time when this happens i sleep it off, and end up sleeping a good part of the day, and once i do get up, an hour or 2 later I have to go lay back down. I was just curious... is this part of that crazy potsy feeling?

Oh pooh bear.. I have been and am in your shoes right now. I recently applied for a program for persons with disabilities, it is called the LIFT program, it is through the public transportation department (bus) they have the shuttle buses that will pick you up at your home and take to your appointment in the city, or to the store, mall, that kind of thing. you have to pay the same fare as if you were riding the city bus. and then you set up a pick up time, and they will pick you back up and take you home. I live in Pa, and we have this program here in Erie. You would want to call your city bus station and see if they offer any kind of program like this. You will need to file a form. but it is relativly easy to sign up for. that is the only thing that I can think of. I was living alone, and am about to be living alone again, I know and understand how very hard it is, to get about when you have no car, and live in the boonies (LOL), and have no reliable transportation. Oh, do you have a meals on wheels program in your area? they can deliver meals to you, possible for free depending on your income. I wish you well poohbear, and hope that you can find some help soon!

ballroomA, welcome to the forum, sorry that you have pots, but glad that you finally know what is causing you to feel poorly. Linda

Julia, hi I am so sorry that you are so sad and not feeling well. I wanted to offer you my support and encouragemant getting through this difficult time. I, too, also get the weakness and heaviness in my legs, my cardio doc thinks that it is pots/ans probs. Dont really know what to do to allieviate it, I wish I could offer you more! Please take care Linda

Nina good to see you back!! I'm glad that you were able to go on vacation!! However I am sorry that you pots/NCs is flarring up so badly. i was thinking, you may not be able to get into see dr,Grubb anytime real soon, but maybe a cancellation apt. will pop up. Anyways, I wanted to mention, could you GP call and speak with Dr. Grubb? get some ideas of what maybe to do next? I know my cardio doc calls dr. Grubb and speaks to him,, just a thought... i really hope that you start feeling better soon, and kudos to you on going to grad school, thats got to challenging to say the least, How do you do it?? I really admire you for that!! good luck and feel better soon! Linda

Jessica just wanted to add my encouragement and support. I am so sorry that you little one was sick,that must be a horrible feeling for you!! I wish you and you little one and family good thoughts and prayers! take it easy... just focus on you and the little ones.. everything else will be there when things calm down... best wishes to you Linda

Michigan Jan my heart goes out to you and your husband, I am so very sorry that you are going through all of this. I hope that your husband has sucess in his treatments. God bless you both sleep tight! Linda

mary hi iwas in the hospital thursday thru sunday, and I was given IV fluids the whole time I was there. It did help me feel alittle better, not great but better none the less. i did get ahold of my doctor today, and am scheduled to go see him next week, i should hopefully get some answers I am still blacking out, but it isnt as frequent or as bad as it was, thanks for the support!

I am so sorry that you passed out in walmart! It must be a walmart thing, because last nigth I blacked out in the check out in line, it was not cool! Atleast you got some IV fluids.. a horrible way to get it though!! hope that you are feeling better!

hi Everyone!!!!! I was able to get ahold of my doc in pittsburgh, and he wants me to have an MRI done again, only this one is specifically for the "pituitary protocol" If I recall correctly the pituitary is a gland in your head right? Have any of you had this checked into? what exactly do they look for? Linda

COngradulations!!!!!!! I am so proud of you!! It sound like you had an awesome experience this past week, how exciting! COngrats!! Linda

Oh ernie, I am so very sorry how you are being treated by the doc's. They need a swift kick in the ***! it makes me feel so angry for you. If you can, can you look into getting a new PCP? maybe call Dr. Grubbs office and see if they by chance know of a PCP doc in your area, or at least somewhere close to you. Untill then can your endocrinologist, can he/she help you get things set up for home Iv's, maybe through another health care agency? or is that the only one near you? But I am so sorry, that you are haivng such a hard time, I wish you well.. and hope that you find some help soon.. Linda

thank you guys for yu support it means alot! Ernie, I go to see Dr. Grubb in August, and I am scheduled to see my regular neurologist at the end of next weeek, in pittsburgh, am I also going to get into to see my regular cardio dco too. I actually am looking forward to seeing Dr.grubb, I believe that if he has some ideas about my treatment, that he will do anything that he can to help, as well as my pittsburgh doctor. they are all great. as for the Iv treatment, I believe that it does indeed help, that is one of the things that I am going to talk to the doc about, getting IV's done at home.. I too, hope that I get to feeling better soon... thanks again for the support! Linda

hi christine, i just wanted to mention that i get severe nausea too,I get it it I move around too much, eat, drink, stand too long, pre- pass out, after I pass out, pretty much all the time. I drink alot of pepto bismal, and drink warm flat ginger ale..it does help alittle bit goodluck to you

hi everyone... I wanted to update you all. I did go see my doctor on thursday, and when I went my BP and HR were prettty high, and my blackouts where different then they have been before, so she admitted me to the hospital. they did a bunch of test, my EKG showed and high and irregular heart beat (they caled it an arrythmia), and the EEG showed that my brain functioning is slowing down, and they have no idea why... they said that since the MRI came back ok, meaning that there were no tumors or anything.. that they werent going to check into it any furture. I think that that is kinda messed up.. I dont think that that is too normal do you?? And my labs came back and showed my my liver is not functioning as it should. and that my WBC count was high, but again they dont know why these thing are happening. I am alitle upset with the level of care that I got, i was dealing with a whole bunch of doctors that did not really have much knowledge in ANS/POTS problems, and the primary doc treating me did not even know what pots was. I had to explain it to her. Pretty darn pathedic. ANyways I asked the doctors and the nurses several times to please call my cardio doc, that I think that he would be able to help and shed some light onto what is happening, and after all he knows me well and has been treating me for ANS/POTS.. and after all he is a spacialist in the field.. You know that they flat out refused to call him ... they said well if we cant do anything for you, then he cant do anything for you. I do think taht they were wrong. All and all, in the end they told me that they had no answers for, and that didnt know why this was happening to me, and that they have nothing to offer me.. and you know what the neuro doc said to me before I left, to call my pitts, doc and see dr. grubb, that they probably would be able to help, and offer me some treatment that might help me. I'm like oh my god!!! why didnt you just call one of them like I asked you too! AAAAAAAAAAAAAAAAAAAAARRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRRGGGGGGGGGGGGGGGG GGGGGGGGGGGGGGGG!!!!!!!!!!!!!!!!!!!!!!!! SO I have something going on, that nobody seems to be able to figure out or help me with. I now remember why i started gong to docs outside of Erie, the treatment is SOOOO much better! So needless to say that i am alittle scared,and afraid that this "weird stuff" is going to happen again. I blacked out while I was in the hospital.. not cool, but i guess the best place to do it though!!! I was there 4 days, and they really didnt do much for me, I dont think that they knew what to do... but they did however, give me contiuos sodium IV fluids, that helped alittle, I do feel alittle bit better then i felt thurdsay, so that is good. Ok well I justed wnated to pop in... I hope that you all are doing allright. Linda

Corina ernie laura, Ola!! Laura, no it is not normal for me to blackout so many times in such a short period of time. I blacked out 7+ times since yesterday. My lord, that is just not cool. I feel alittle better rigth now, the twitching has eased up some. I am going to call my family doc, first thing in the morning, and see if I can get in to be seen. I also sent an email to my cardio doc, so I imagine that I will hear from him tomorrow. Its not that I am dead set against the ER, its just that I have had so many BAD experiences with the hospitals here, (I;m sure that you all know the drill!) that i dont go unless I have no other alternative, now granted i probably should have gone today, that would have been the smart thing to do. I pray that tomorrow is a better day! thank you so much for your support, it really means alot linda

hi I a using mestinon strictly for autonomic issues. I too, hope that this crash, clears up pretty soon!!!!!

poorbear, I dont know what maybe causing you fatigue, all I can really say, is i understand and know where you are coming from. I get bouts of severe fatigue, where all i can do is just sleep. Sometimes that is the best thing to do it sleep. I know its not an ideal answer, because it makes you feel like you are slepping your life away, but maybe it is your body just trying to tell you, Hey I'm tired! good luck and I do hope that you pull out of this bout of fatigue soon. best wishes linda

Hi everyone.. I have blacked out 7 times since last night, and last night after i blacked out for the 3rd time, i started to feel really weird, the right side of my body started twitching.. and i left like my insides were shaking. I also got a horrid headach. well i woke up this morning, and my head hurt even more, alot of pain and pressure in the back of my head. that is normal aftr I black out. But wasnt normal, was the twitching and numb feeling that i got in my face, was unreal, that has never happened before. It lasted for a couple of hours, and I had a difficult time talking, my tongue felt thick and it was twitching too. The muscles around my mouth and eyes were twitching like bad. It felt like every muscle in my body was twitching. i was wondering if any of you experience this after blacking out or passing out...my blood pressure was high 151/100. I am tempted to go to the ER, but they are so rude that and I really dont want to deal with rudes nurses and docs.. HMMMM???? Well I thank you all once again for listening to me vent... Linda

Corina, hi... thank you so much for the info. My doctor increased my dose to 60mg 3 times a day to the 180mg, timespan release, twice a day, when I initially started the mestinon, it had me down and out in bed for 2 days, I have to wonder if that is what is going on now. And yes, i will agree, mestinon hasnt made drastic changes, but it does help alittle bit... thanks again!

Jenn202 thanks for the support! I have been on mestinon since january of this year, and the doc has been "tweaking" the dose graudally. I am hoping that this will work!!!!! Yes, i do cherish the days when i get to live lofe as a "normal" person, or as normal as a pots patient can live. Those good days help you get through that bad ones

Hi all I am terribly frustrated tonight...my doctor increased my dose of mestinon up, and boy the first couple of days I felt WONDERFUL!!!!! I actually was able to go out with my family saturday, and have some what of a normal life for a few hours. It was great.. and i was able to get my kitchen really clean, I felt great the first 3 days, and I had more energy then I have had in a LONG time. I was nieve enough to think that hey maybe this is a turning point for me finally, well,sunday came, and I couldnt even lift my head up off the pillow, I tried to get up and walk to the bathroom, and I couldnt even stand, the very short few seconds that i was on my feet, some strange things were going on with ym vision, I dont even know how to describe it, every thing looked like it was moving, very weird. So I stayed in bed and slept the entire day, monday rolls around and i still feel the same way, I am so dizzy that I can barley move, then the nausea sets in, and it just didnt make for a good day. And today,wasnt much better, sleep sleep sleep. Well, I sat up for a little while and tried to force myself to eat, and I got really sick... i wasnt even finished eating, and i started to get the shakes, were you shake from the inside out, and then I started to get really sharp pain in my stomach region, above my bell button, it hurt, i felt like I was going to throw up. I did lay down for a while hoping that it would pass, no such luck. I blacked out 3 times in about 5-7 minutes, they dont last very long the blackouts, but my god they make me fell terrible, more horrible then i was feeling before. I have also been having a very fast HR since early this morning, it has been teetering around the 190's all day long. YUCK! Anyways, i just needed to vent and tell somebody, I am pretty much alone most of the time, and find great comfort in this forum...thanks for listening!

Jessica, you baby is BEAUTIFUL!!!!!And Ethatn is so adorable! COngrats!!!!!!!!!!! on your new bundle of joy. HUgs!! Linda