Dizzy Dame

Some people are bothered by sugar and others are not. I personally tolerate gatorade just fine and it's the cheapest, easiest way I've found of getting my electrolytes. You can also try pedialyte but that's very expensive. Some people make up their own electrolyte solutions using salt, water, and other ingredients...I just don't have the energy for such an undertaking. There are "electrolyte" powders you can buy online to make up your own electrolyte solutions, but these often have other fillers like green tea extract and echinacea, which both cause problems for me...but maybe they'll work for you.

I go through periods of being homebound. Fortunately I've been able to continue reading, so I spend most of my time with my nose in a book. I also play with my cat, watch lots of TV and movies, email friends, and update my blog. Overall I manage to keep pretty busy, although sometimes I still feel like my brain's melting out of my skull! I hope that if you are homebound that it's not for long! -Lauren

I'm so sorry to hear about your bad turn in health! Hopefully the treatments will work and you can return home soon! Get lots of rest and know we're all pulling for you! (((HUGS))) -Lauren

Heya Morgan, I just wanted to see how you're doing. I hope things are starting to look up! We've all been missing you so much on the forum Hope to "see" more of you soon! Hugs, Lauren

Oh linda I had no idea you were in such a bad way...I really hope you begin to feel better soon! You'll be in my thoughts and prayers dear! I'll try to find your adress so I can send you a get well card (((((HUGS))))) -Lauren

Glad to hear the test came back negative I'm sorry you've been feeling so tired lately...hopefully it's just a passing thing and isn't a sign of something new! You'll be in my thoughts Hugs, lauren

I used to take muscle relaxers for my chronic pain too. They kind of helped with the pain, but they also made me reeeeeeally loopy I used to have really wierd dreams if I went to sleep while on them too... I hope they help your pain! It's no fun to be in pain all the time Let us know how you do! Hugs, Lauren

Hi there, I'm so sorry to hear all that you've been going through It sounds like things are very quickly spiraling out of control, and I'm sure it's terrifying to have so many things go wrong with your body at once. I hate to ask, but have you looked into ALS? The difficulty speaking and swallowing tipped me off. I know that there are some treatments for ALS so if you do have it, it's best to find out right away. Have you been to a good neurologist? A good cardiologist? You might also want to look into some of the more agressive autonomic neuropathies...although the BP rising is an abnormal symptom for many autonomic neuropathies...PAF and MSA I think both have trademark HYPOtension rather than HYPERtension. I wish I had more answers for you...but hopefully someone on the forum might have better ideas. -Lauren

Hi Sara, I'm currently going down the MG path as well, but we've begun to suspect that I really have lyme disease as opposed to MG. I too have trouble swallowing and occasional trouble chewing. What region do you live in? If you're on the East coast I can recommend an excellent neuromuscular Dr. Feel free to PM me if you want. -Lauren

Many with POTS are considered high risk. I've not had any children but if I'm ever healthy enough to concieve, I would also be considered high-risk. I know there are many mothers on this forum, some of which have had children while sick with POTS, so hopefully someone will be able to better answer your questions.

My answer: "You're fired". I don't put up with **** from any doctor. I've been too sick for too long to listen to any of their BS. I've also learned that being assertive can make a difference. I let doctors know right off the bat that I'm an educated, intelligent, and motivated patient. Normally they respect that, but when they don't they're gone.

Hey Amy, I'm so sorry to hear about your bad night and day You probably know this but Lyme can cause electrical problems in the heart that show up on the EKG. Also I have a "right bundle branch block" that shows up on my EKG every time and my heart's in great shape. From my understanding, often times that particular kind of change on the EKG (which often shows up as an elongated T-wave) is idiopathic and doesn't mean anything dangerous. I'm glad you're going to the cardiologist! Hopefully it'll be nothing more than a harmless electrical problem In the meantime, you'll be in my thoughts. Please let us know what happens! Hugs, Lauren

I'm so glad to hear your fever's breaking Melissa! Hopefully you'll be able to get an at-home nurse for your next IVIG infusion...and hopefully you'll start to see some benefits soon

Hi Lauren, I'm a Lauren too I have horrible acid reflux but also have to eat a high salt diet...I just keep up the salt and eat antacids. As far as I know there aren't any really salty foods that are easy on the stomach. If it gets really bad, talk to you doc. Hope that helps, Lauren

I don't know any good doctors, but I wanted to bump this topic back up to give it another chance

Thanks for updating us Jan. As always both you and Jeff will be in my prayers! Hugs, Lauren

How beautiful Persephone! I can't imagine how inspiring it must be go to to school there...so much history! We're all so proud of you for sticking with it, even though it was so difficult at times, let's all hope those bad times are in the past Hugs, Lauren

That's such excellent news Amy! Keep us posted as you continue your treatment Hugs, Lauren

Melissa, For some reason I didn't see that you'd updated this post until today. I'm so sorry that things have gotten even worse for you I'll continue to pray for you and hopefully your fever will go down soon! Please let us know if there's anything we can do, and if you want to PM me your address, I'd be happy to send you a get well card Hugs, Lauren

Hi Sara, It depends on how often and how low your blood pressure gets...for example, my BP drops dangerously low every time I stand, so if I were to call the doctor every time my pressure was "too low", I'd always be on the phone. Like Cardiactec said, I'd worry less about the numbers and more about how you feel. If 100/70 makes you feel sick, than that's too low, if you feel fine at 80/40, then that's not too low for you. Is your BP constantly dropping? If so you may want to talk to your doctor about medication to treat that. I'm on midodrine and mestinon and they've really helped to keep my BP stable. -Lauren

Hi Sara, If you have raynauds, and the drug is contraindicated for people with raynauds, then perhaps you should talk to your doctor about switching. I'm not on beta-blockers but I do have raynauds and I was warned that exaccerbations in the condition can lead to gangrene, so it's not something to ignore. If your feet are turning white/blue for long periods of time, that's not good. Hopefully you can switch medications and everything will work out! Let us know how it goes Lauren

I don't know about herniated disks, but if the pain is as severe as you're describing you should probably get to the ER or to your doctor quickly. Sudden, severe pain counts as an emergency. Hope everything's okay! -Lauren

I dont' know of any hotels, but I wanted to congratulate you on getting an appointment. Hopefully they'll be able to get to the bottom of all your crazy symptoms Hugs, Lauren

Malosp, Yes, the doctor meant that POTS is not a disease in itself, but rather a finding. Which, if that had been part of a supportive converstaion, would have been refreshing for me to hear. However, given the context of his attitude and the other things he said, it didn't feel so nice.

I tend to get mixed treatment from specialists. The doctors at Vanderbilt, for example, were caring and compassionate and really listened to me. I've felt like I'm in good hands at Hopkins, but my doctor there is a bit less compassionate...in fact, his bedside manner is almost non-existent. I've had mixed reactions from "small-time" docs as well, in fact, some of the worst reactions I've gotten are from small-practice clinicians. The best treatment I ever got from a doctor was my endocrinologist in Hawaii. He used to call me on the weekends to see how I was doing! How's that for caring? He treated me more like a granddaughter than a patient...there aren't many doctors like that anymore. I've made another appointment with a new LLMD so hopefully this one will be a good fit. The person who recommended her spoke very highly of her, so hopefully things will work out