Tia Koul

HI.. I am just reading your post. I don't know about your financial situation, and I know it gets costly. But here are 2 idea's. Dr. Richard Mueller in nyc is amazing. He is a cardiologist but will prescribe and be compassionate and try to help. I hated dr. Kaufman.. he was the first one I saw probably 10 years ago. My internist was Dr. Leo Galland, who is out of network and very expensive, but if he hasn't retired yet, I would go see him. THe guy is a genius. I'm sorry you are struggling so much. Don't give up!!! And if you can, see Dr. Mueller, he is a great guy. The office is a bit disorganized and they always run late, so say that you are coming in from the Island You never know. Good luck! Maybe don't pin your hopes on one medicine. You probably need some way more thorough blood work before anyone can know what to give you. Really, if you can save up, go see Dr. Galland. Hang in there!!

Hi.. not sure if you already had the procedure, but they gave me 2 bags of IV fluids before hand just to be sure and it worked like a charm! Good luck!

i was given 180 2x. very hard. then 180 1x a day. give it 3 weeks and you will feel better. don't panic, it will pass. and you may not have any issues at all! maybe keep some immodium handy or something that works for you for nausea, vomiting, diahrrea. good luck! you will hopefully see a change over the next several months.... give it your best shot!

Hiya... well i am similar to todd. i am in bed now so won't pull out the results, but also something like alpha, beta, delta bursts. no stage 4 deep sleep, all disrupted even on my sleep med, which at the time was 50mg trazadone. after 30 yrs of not sleeping, that was my magic pill. saved my life. i take 150mg trazodone now. plus lunesta.... 3mg but i cut them in half, and trying to get off them completely. i had a nice study done too in sleep lab. if you have trouble sleeping, it will be a bad night for sure. but you will get useful info if they find something. i also have the sleep delay phase thingy, so i sleep late in never get out of bed in the mornings. thats just the way i roll and not changing a thing! just make sure an actual sleep doc is overseeing and reading the results! i was in nyc, did it at the sleep lab at columbia presbyterian, upper west side. btw, trazodone is a secret little pill that a glorious gp let me onto back then... the canadian pharm ones don't work tho. you may have to try a couple to see which one works. good luck!

Hiya, just to add my 2 cents, I was on mestinon for about 3-4 years. It is tough on the stomach but worth it. There were no definable improvements that I can put my finger on, but I was able to carry through and complete tasks without running out of energy. That was huge for me. It was a small improvement, but monumental. Seems I have cyclical vomiting, so my cardio took me off it temporarily to see if I would stop throwing up. I did not. But battled getting back on it since I was much sicker at that point, and have yet to get back on it. When I feel a little better I will try again at a lower dosage. But it was/is the only med that actually made me feel better. I take bystolic still and my sleep meds, but nothing touches the symptoms. Good luck!

Yay!!! Great news! So happy you are going for it and not getting discouraged!!! You can do this!!! Just remember to pace yourself as you need, even next semester if you take one less class, you will be fine!!! Just do what you can handle and you will finish!! xoxo

I use mucinex and afrin as well. No problems. Watch out for afrin addiction!!!!! Use it for a few days, just don't over use it. Then take a break from it

Hi Sami, I so feel for you. And I wish I had some good advice. All I can say is I understand. I think I attempted college 5 different times. But I never finished. Again, this was before dx. My issues have been since early childhood. But I agree with the comment that says to do whatever you can now. Not to be discouraging, but it could get harder in your later years. Not to over-do it or push yourself into a major crisis, but take fewer courses and plan on staying in school longer. If you are undergoing some treatment and therapies now, it should help boost you through. But again, you must pace yourself. It is good to be stubborn and not give up, but you can be a little more lenient if need be. I know at this point, at 41, I will not have a major career, kids, or a degree. That is the way it is. But, had I started earlier, maybe more could have been accomplished. I am entrepreneurial, so I am not missing out, but it gets tougher. I remember an orthopedist told me when I was 18, to have kids young. He was right, for so many reasons. So plan your life, do everything you want to do and achieve, and later on down the road you can slow down like I have haha. But meanwhile, tweaking your schedule may be very reasonable and appropriate. Trust your instincts, but do not give up! You don't know how your life will play out, and you may be get better as you get older. We are all different. We have all been blessed with glorious gifts. It may not look the way you thought it would, but there are gifts at every turn. You can do it! And new opportunities could arise if you slow down a bit, you just don't know yet!! Its your life, so enjoy it and be kind to yourself! You get to create this in any way you want... keep up the hope... you have every reason to be hopeful and have a great life! Just go a little slower prehaps! xoxo

Interesting... thanks for sharing!!!

Hi Brenda, Good for you and your family vacation! have a great time! I can only say for me I tolerate short flights much better. Under 3 hours. I will get tired but not sick. Like dizzy said, international flying is harder. I struggle with those big time. But, if you have a few hour trip, she should hopefully be ok. But that is just my own experience. I hope she does well, and I hope you have a great time! Glad she is doing better

Thanks guys!! yes, all the swelling has gone down. How lucky. Still feverish, feel quite sick but much better I was just thinking about the different places I need to record that drug name so I can find it when I forget! Definite DON'T list!!! lol. Thanks again! Oh, HR standing a bit high at 158. Around 100-110 seated. Not too bad but makes my chest feel heavy. They told me to go back at any signs of distress. But i think it's just the pots stuff acting up. Pressure a tiny bit high sitting 138/86. Standing 125/90. But I'm also on a lot of meds today. yuck. So, all in all, I think it's ok. I ate my chocolate chip pancakes, watching When Harry Met Sally. Pretty good night in the end lol. Night guys! And Thanks for being here!

HI Sarah and thanks! Yes, so many things aggravate us. It's unreal. Everything is connected, and I am always looking for that answer as well. It's a long hunt! I am glad you are improving on the meds, that is awesome! I fyou can take care of as many other issues as possible, it will certainly make living with pots a ton easier. That, I can attest to! Thanks

I'm lucky i don't have those sensitivites. It sounds like some of you have a true histamine issue. I am probably not in that group after all. But that's ok, I have plenty to keep me busy.. lolol

Yup.. you were right indeed. yea, it was very bad. I was on cephalexin for a staph infected boil. Now, I am on levaquin, and it seems ok. It's a diff type than the cephalexin, so they think it should be ok. I may be allergic to penicillin like my dad. And correct again, it was not the infection. Plus, they said it looks like it is starting to heal. So, most likely the meds did it. Not happy about being on steroids, but its only 5 days, hope it goes well! I am just so happy it has all calmed down so much! Thanks

Thanks guys... yes, anything that happens to us increases our symptoms. I am very senstivie as well. I just got back from the ER. That was a good move. I am much more comfortable now. They told me I did the right thing by going in. I woke up worse, swollen eyes, vomiting, chills, etc. So, they gave me 5 days of prednisone, and benadryl. It looks like everything has settled down. But she said to watch out for new eruptions, breathing problems, etc., and to go back to ER if anything new happens. So, now I know. Wow. That was crazy. No wonder I have been feeling so sick!!!! My body is very sore, joints too. But most of the swelling is down. It creeped up my neck and face last night, and down my arms to my hands. I thought I was in the twillight zone. When you hear people have hives, you just have no idea. It was awful. I hope it stays at bay now and heals up. Thanks for everyone's input. That was scary. Still have fever, but much better. Now i can relax )))