dizzygirl

hi ernie, i am also heading to see Dr. grubb in august, (aug. 23 is my app.), I havent been there in some time ( nearly 2 yrs) but my doc has had contact him off and on.. and Dr. grubb prescribed.. you guessed it! Mestinon... I can sympathize with the long trip, though I dont not have to travel 30 hours round trip... it will take me 12 hours round trip to see Dr. grubb, I am traveling by bus, so this ought to be fun... 6 hours one way having to sit up, the seats dont really recline back.. this ought to be interesting! Well ernie, I wish you a safe "uneventful" trip... and good luck at Dr. grubb's office. I hope that he can offer you some help.. let us know how it goes

thanks guys! I always know that I can count on you guys... I am curious to see what the ultrasound shows, I had one done about a month ago and they said that it was allright. i will let you know what what the ultra sound shows when i get the results.. thanks again!

Hi I have been haivng a great deal of stomach pain, nausea, vomitting, and diarrhea, this particular round has lasted for about 2 weeks, the pain is horrible... anyways... i went to the doc today, and she tested my urine.. and it showed that there are high levels of bilirubin in my urine. She said that bilirubin is bile from the gallbladder... I am going to have an ultrasound of my gallbladder first thing in the morning. I am just curious if any of you have experienced bilirubin .... or gallbladder problems... I was thinking that my POTS was affecting my digestive and urinary system, as I have had problems for years now... with no explainnation... allright, hopefully all goes well tomorrow, Linda

Hi! I must say that I have a very hard time getting cleaning and laundrry done.. the laundry stacks up downstairs. most days I cannot make it up and down the stairs.. i will get blessed with a functional day every now and then... then I can get things done... I have a dishwasher... I LOVE IT!!!!!! as for cleaning floors... when I am able too.. I use the Swiffer Wet Jet.. i love that little gadget! as for cooking...things that can be done in the crockpot... and Tv dinners.. quick things that dont require me to stand over a hot stove.. or a hot kitchen... :-)

OMG!!!! I am experiencing the same thing! espacially in the tongue and face.. I take 180mg of mestinon 2xs a day.. and the facial twitching and stuff started after my dose was upped to 180 2xs a day... I get the facial twtiching and difficulty speaking... I do not know if it is related to the the Mestinon or not, that would be a good question for Dr.Grubb though... I havent found anything to relieve the twtiching... with the tongue... does it feel thick? and do you have difficulty speaking? And just feel really "weird" in general.. not like your usual self?? I wish I could offer you something more! Just know that you are not alone! Linda

Hi I have aproblem with being excessivly thirsty too, yes I do believe that it can be a symptom of Pots.. in my case I have a double whammy.. diabetes and POTS... I also have a problem with dehydration.. no matter how much I drink.. I'm still thirsty.. keep drinking the fluids... especially in this heat... good luck

oh yeah, i did want to mention, my cardiologist who is treating for pots, is great.. very willing to help me feel better.. its all those other docs I have aproblem with!

blackwolf... hello..I get alot of the symptoms that you mentioned...have for along time now.. I had an MRI back in 2001 of my neck that showed I have a herniated disk at the c5-c6 level, and that my spine is rotated at the top and my spine is curved in the shape of an S all the way down my back.(scoleiosis) I actually have wondered if any of this with the neck and stuff will affect my pots.. I should ask.. I never thought to ask before.. I think that that is the cause of alot of the pain I get in my back and neck.... sorry I dont know where all that came from!! My family doc just gave me a script for nausea, tygan, thank god for nausea pills! I hope that you have luck finding some answers, and I hope that you all begin to feel better.. or stay feeling good! HUGS Linda

Hi when I started taking propranolol, I noticed a difference after about 4 hours of taking it. I had such a burst of energy!! It was fantastic! It was a good difference.. I'm not sure sure if this is a typical response to meds.. now when I take propranolol, I notice a difference after a few hours.. sometimes good. sometimes not... best of luck to you!

thank you:)

Hi rita, thanks for the tips! How do you make your BP? I love Penaut butter, and at times crave it really bad, and eat it by the spoon ful, (weird I know).. I must say that when I am feeling bad I do not think to test my blood sugar, just my usual times... I will talk to my doctor about the 3 hours gluco test, what exactly is involved in that? thanks again Linda

thats not a bad idea... do they make a 10mg dose of propranol? I will have to look into that..

YES DEFINATELY! I get much worse when it is time for me to have a period... it ***** big time.. usually during this time I try to take it easy and not add any extra stress to my body.. this is also usually the time the i pass out the most too, and get the severe migraines... UGH... However I only get a period about once every 9-12 months.. i am terribly irregular.. so dont feel alone in feeling worse during menstrual time...

Hi my my my, I am so fed up with having pots.. it just one of those days!!!!!!! I feel like I cant get a handle on this illness, my symptoms are really rough today.. i wasnt able to get out of bed till after 1pm, and i slept all that time.. I couldnt keep my eyes open! I am just so frustrated... My cardio doc increased my propranolol to 90mg 3 times a day, because my heart was still beating too fast, on the 60mg 3x's a day. so he upped it, I began the higher does, and my heart starts beating TOO slow, averaging about 45bpm, last night I felt so horrid, I tried taking my pulse, and I swear I couldnt find it..i could feel a very very faint pulse in my wrist.. and it was slower then 45 I think.. so got ahold of the doc today and he lowered my dose back down to 60mg.3x's aday. I just feel like I cant win, in regards to heart rate issues, either its too fast or too slow, never just even keal.. so what do you do? I have been on SOOOOOOOOOOOOO many BB's over the past 3yrs, and i have not had alot of luck with them working... So what do you do??? I am having such bad side effects with the Mestinon, at a hgiher dose, I'm ot sure that I can handle it much longer...I really am trying here with meds... but I am wondering if there isnt maybe another way.. if anyone has any suggestion I would love to hear them... maybe so different ideas for treatment... ok I'll stop rambling now.. I just feel so defeated by pots today... linda

Hi i saw my family doc yesterday, and she is at a loss, of what may be going.. she is wondering if Migraines are causing it... but I have not had a headache with it, atleast this last time around.. she was going to call my docs in pittsburgh, and see what they thought... I did try calling the neuro in pittsburgh, but nobody has called me back yet....so i will have to keep bugging them! I have not been feeling very well.... on top of all the POTS things going on.... I caught a bad stomach virus... or my doc thinks that I got food poisioning.. I'm like my god I cant win!!!!!!!!! When it rains it pours! thank you all so much for your support and concern... your all great I'l let you know if I get anywhere with these doctors...

LOL.. how many men does it take to repair an ac unit! I got a chuckle out of that.. hope that your AC in up and running soon... and that you are still in a cool house asap! glad that you made it through the night!

Hi laura, Yes i had an MRI done, 2 of them actually in the last few weeks. On the 2nd MrI, they specifically looked at the pituitary gland, and they saw "something" on the pituitary gland, but they were unable to figure out what it is.. they could only get a look at it from one angle..the neuro tht i seen said that i will more then likely have to have the MRi repeated, in hopes to get abetter look at what is on my pit. gland. I do have diabetes, but it has been running around 140, so not to bad.. I havent been tachycardic too terribly much in the past couples of days, my heart rate is beating much slower then it normally does (my propranolol was just increased from 60mg 3x' a day to 90 mg 3x's a day), so that is more then likely why it is so much slower, HR is running in the 50's I had another EEg done friday in pittsburgh, to see if there was any seizure activity, and to see if my brain functioning has slowed down any more.. the last 2 EEg's i have had done have showed slowed brain functioning.. but they are unsure of what is causing it.. Yesterday during the "episodes i checked my BP it was 80/55, alittle low, but i have been much lower then that in the past.. I spoke to my cardiologist during the attack and he told me to get to the ER.. but the Er doc didnt even know what pots was.. and in the end said to go back to pittsburgh to be seen. I would much rather be seen in pittsburgh, but I just got back from there and it took every cent I had to stay there... So I will defiantely be calling them tomorrow(neuro) and seeing what more can be done.. sorry I am so long winded tonight!!!! its just so scary when these things happen.. and you dont know what is causing it or what is going on!! thanks for listening!

Dayna Hi! I have been on Mestinon since january 05', the first couples of days were really rough for me, it made my muscles feel really weird.. and i couldnt get up and out of bed for 2 days, But I am uncertain if the severity of the fatigue I was feeling was from the medication or just a couple of bad potsy days. I started out on the dose of 60mg 3 times aday.. I did see an improvement with my syncope episode Since january I think that I have only passed out or blacked out about 15 times... and believe me that is MUCH MUCH better then who I was doing. At the end of May i went up to 180 mg timespan.. oncce a day, and the first day after I started that dose i had SOOOO much energy and felt so good, that I scrubbed my whole kitchen down.. (i know not anyones idea of fun! but it needed to be done!) I am now taking 180mg. timespan twice a day.. and I am having a rough time at this dose, (ie) severe abdominal pain.. and gastro problems.. but I am hoping that it will go away once my body adjusts to the higher doseage. But all in all I must say that the Mestinon has helped some, its not miraculous changes... but some improvement is better then none at all.... it is definatly worth trying.. best of luck to you!

Nina, I am so sorry that you are without AC, that is rough! Do you by chance have fans that you can run? try wrapping a wet cold towel around your neck.. I know who you feel about not having AC, we just have one of those little window units in the bedroom, and the rest of the house is stiffling hot... I hope that you find some relief tonight... and that your AC gets fixed asap.. good luck

Hello all I am having things happen to me, that normally do not happen.. I am wondering if any one else experiences this.. Yesterday, i started getting twitching in my face, all around my eyes, cheecks and mouth, even in and across my nose. right before the twitching started, my vision got really messed up, i am not quite sure how to describe it, like looking striaght out, all the way around was like I was seeing double, just around the edges of my eye. and it was very vrey blurry. Then, after the twitching started, I began, having difficulty speaking, i knew what i wanted to say but could not say or pronounce anything, and when i did speak, it was slurry, and hard to understand...my tongue felt very "WEIRD" the only way I can describe it is weird! and my body felt weird in general, i just did not feel right, it was different from my usual potsy feeling.. I ended up in the ER yesterday... they did give me oxygen and an IV of fluids... but i had allready started to feel better by then... I waited over 4 hours to be seen.. what i was feeling last about 2 hours.. the ER doc did not even know what POTS was, he said that there was nothing that he could do for me, and that I need to follow up with my neurologist in pittsburgh... I'm like.. i just cam back from there I dont have the money to go back there again!..the ER doc said that it sounds like I had a seizure.. and the neuro said that it sounds like I am having convulsions! How terribly frustrating... thanks for letting me vent!

ariella hi I also have restrictive lung disease.. I' also have pots.. but I do not know if the 2 are related.. good luck!

rita and sunfish... thank you so much for the support! I saw my counselor today, and it did help me feel alittle bit better. She said with the amount of stress in mylife that its not a wonder that I feel angered. and out of control sometimes.. but she said all in all i am handling things well.. so that was nice to get a vote of confidence.. again thank you so much! Linda

hello I have a great deal of visual problems too. we believe that it is associated with the pots and low BP. I get alot of floaters, blurred vision, diming, tunnel vision.. and alot of pain and pressure behind my right eye. Most days I cannot see straight or foucs on anything.. it is pretty constant these visual problems.. Sometimes headaches makes these problems worse, but 9 times out of 10, there is no headache.. just screwey vision!!!!! I am sorry I dont have much to offer you in regards to relief of these symptoms. I have days where i sit in total darkness, because i cant stand any light or sound.. my eyes are very sensitive to light..i wear sunglasses even if it is cloudy outside! LOL I wish you the best of luck.. let us know how it goes with the doctor.

Hi everyone, I a m curious.. I have been having a particularly bad time with my moods latley. Meaning that one minute I am fine, and the next minute i feel consumder with rage and anger.. this is not normal for me, I am usually a real friendly easy going person.. not easily angered. well over the past month or so, I keep getting these bouts of rage and anger, and i lash out at my boyfriend... after i come back down from whatever this is, I am usually really tired, and need to sleep. I am talking to a counselor, becase when this happens I feel so out of control... I am wondering if any of you experience this?? Or am I just crazy??? I dont like feeling that way, and i dont know what causes it, but it goes away just a quickly as it comes on. Weird Huh??

1. Linda 2. 23 3. POTS, Gerd, IBS, diabetes, and resticitive lung disease 4. I was diagnosed with pots when I was 20, but have lived with pots to some degree all my life. 5. I live In Erie Pa 6. when I am at my worst.. I am bedridden, for days or months at a time.. severe fatigue, nausea, diarrhea, constipation (going from diarrhea to unable to move bowels), severe migraines, shortness of breath, tachycardia, High/Low BP, visual disturbances ( floaters.. blurred vision), pressure behind the eye and in top and back of head, difficulty swallowing, syncope, blacking out, light sensitivity.. vomitting... I may have forgotten a few things..LOL oh yeah dizzy lightheaded.. feeling weird..oh and feeling like i am going to heat up and combust from the inside out!! nigth sweats, cold hands feet..insomnia cycles 7. at best I am slightly nauseated, mild visual disterbances, no syncope, just feeling of syncope..light sensitivity.. 8. I have been on alot of meds.. Proamatine did not work.. it made me feel so horrible.. 9. what does HELP.. lots of gatorade.. green olives.. water.. lots of salt lots of sleep.. staying away from bubbly pop.. and starch carbohydrates.... sunglass for light sensitvity .. air conditioning of course! and right now Mestinon and propranolol, at higher doses seems to help alittle bit... and of course my ambien so I can sleep at night