Rachel

Hi Cathy, So sorry for your current frustrations with doctors. It's tough with an illness that isn't understood by many. It's really hard to say what kind of doctor would be the best. I've had neurologists who knew a lot about POTS, and I've had neurologists who didn't know much at all about POTS. I've had primary care doctors who knew very little, if anything, about dysautonomia before I became their patient, but then they turned out to be a huge help because they cared enough to research, listen to me, and find out what I needed. I've had cardiologists who were amazing, and cardiologists that I never went back to. It just depends on the individual doctor, their knowledge of dysautonomia, and their willingness to learn. You may actually find that a sleep specialist and a sleep study would be beneficial. One of my favorite doctors in the past five years was actually my sleep specialist. She was smart, and she was willing to research my condition. She ran a couple of sleep studies on me. Even though medicine hasn't helped a whole lot in the area of sleep, I find it helpful just to know what is going on and why I can sleep all night but still feel sleepy in the morning/all day. Your doctor may feel frustrated too - wanting to help you, but unable to do anything but refer you to a doctor who maybe could. Perhaps that's why he recommended the sleep study. If you think a neurologist could help, or if you need a fresh perspective/second opinion, then that could be helpful. It's hard to know unless you try. I'm sorry the fatigue is so overwhelming. I hope that you are able to find what you are looking for. I wish I could do more to help you. Rachel

It's great to see the new forum up, Michelle. I'm excited about seeing the new website soon too. A kind reminder to our members... please be patient as the updates continue and kinks are ironed out. Rachel

Congratulations! I'm so happy for you. I hope that this pregnancy goes smoothly for you. Rachel

I too can feel awful even when I have a normal blood pressure. If my bp gets down to 90/50 or lower then I always feel bad, but I can have a "good" day or a "bad" day with any bp above that. Low blood pressure can cause symptoms, but our low bp is also in and of itself a symptom of dysautonomia. So just because our blood pressure is normal for one day doesn't mean that the rest of the dysautonomia symptoms go away. You can still feel yucky. And it could be that your body is working so hard to keep your blood pressure at a normal level, that that is what is making you so tired! Maybe a salty snack, fluids, and a movie with your little ones would be a good plan for the afternoon. I hope you feel better soon. Rachel

Non prescription helps in raising blood pressure: compression hose abdominal binders coffee cold (wear flip-flops or no shoes when it is chilly)

Great thread! Some people use SSRIs. Seratonin aids in vasoconstriction, and for some people an SSRI gives a benefit similar to that of midodrine. I've tried a few SSRIs over the years, but none of them were helpful for me. If midodrine is no longer available, though, I will be talking to my cardiologist about trying an SSRI again.

I've never seen anything like that. It's a great idea, though. I don't know that I would use Christmas cards for raising awareness, but if there was an all ocassion card, blank inside, I would use that. Something versatile enough for a thinking of you note, a thank you, a birthday card, etc. I would probably buy a hundred of a card like this. Maybe someday if/when DINET is looking for a new fundraiser, you could suggest this! Rachel

Wow. How sad! I hope the FDA changes their mind on this one. Midodrine is one of the very few medicines that improves my quality of life just a little bit. I know it helps so many of us! And from what I've read on side effects of the medication, it hardly has any! Compared to most of the meds out there, midodrine is pretty benign as far as side effects go. Thanks to those of you who have posted ways to contact the FDA and and Shire regarding this. Rachel

I am so sorry that coverage for your TTT has been denied. It has been over 15 years since I had my TTT, and I have no idea if it was covered by insurance back then or not. I was still a kid, and my parents paid all of my medical bills. Can you appeal the decision? If insurance still denies the claim, then you could look into financial aid options at the hospital. If they don't offer financial aid, then you can probably at least get a discounted price if you are paying by cash. They give insurance companies discounts all the time, and I have found that they often give discounts to patients paying out of pocket too. One way or another, I hope that the bill will be manageable for you and that it won't cause you too much stress. Rachel

If you are severly limited in how far you can walk, then you do qualify for a handicap parking tag. Even if you don't need it every single day, you can get a placard to hang in your car on the days that you do need to use it. If you think you might qualify for one, you can talk to your doctor about getting the proper forms filled out. Yikes on the stairs at the house! I hope they don't get too difficult for you. If you find that they do become too hard to navigate, according to ADA guidelines you do have the right to request a ramp or other reasonable accomodations. I hope that the semester goes well for you. All the best, Rachel

I have a poor memory and feel "brain fogged" every day. Lately I haven't been blogging or posting much on DINET because it is just so hard to think and formulate my thoughts! There are days when it is worse than others. Lack of sleep, too much sensory input, and lack of proper blood flow to my brain make it worse. Stuff that helps me with cognitive difficulties: good sleep limiting exposure to overwhelming sights/sounds midodrine (because it helps to keep my blood from pooling) lying down to rest Cerefolin NAC (a prescription) I hope you can find some things that help you with your memory. Rachel

My health was better 10 years ago when I was in college. I wouldn't be able to do it at all now. I did struggle with POTS back then, but I was able to make it through 4 years college. One of the main things that helped me back then was going to a small college, and I mean small. There were only three buildings on campus, and they were all close together. One building had the dorms, the offices, the chapel, the student lounge, and two classrooms. It was perfect for me. I could literally sleep in until 10 minutes before class, get dressed, walk downstairs, and still be on time for class. Going to such a small school is not an option most would choose, but it worked really well for me. There is no way I could have walked around a large school campus every day. Other than the small school, adequate sleep and rest and healthy food were also essential. Rachel

Yay! I'm so glad the apartment will be furnished for you. I hope the sofa is comfy. Rachel

Hi Susan, How are you doing? Have you tried any new medications? All of us respond differently to meds, so what works really well for one person may not work at all for someone else. It can take a lot of trial and error to find the best treatment for each individual. For what it's worth, the things that help me the most are: Midodrine, Cerefolin, Melatonin, compression, coffee, gatorade, fluids, peppermint tea, adequate rest, and mild activity. Things that definitely did not help me were: Epogen, Cymbalta, Ritalin, Beta Blockers, and Klonopin. But those meds have been very helpful for others here. I hope you can find a good treatment plan for yourself. You might want to also check out the DINET page, What Helps, if you have not done so yet. Rachel

Hello! It is good to hear from you. Thanks for stopping in to say hi. I had just been thinking about you a couple of days ago and was wondering how you were. So how are you doing? Warm wishes, Rachel

I have hypermobile EDS, but I haven't had any complete dislocations. One of my biggest problems is loose ligaments in my feet. It was those loose ligaments that sent me to the doctor a few years before POTS ever did. I now have more loose joints that I have to be careful with. They sometimes feel like they are slipping if I'm not careful. Julie, I have problems with my hips (pelvis?) too. I'm not exactly sure what it is. I don't think it is a complete dislocation because I can put it back in place on my own. Quite often something will be wrong in the joint, and I lose my range of motion. I can move my leg forward a little and backward a little, but I can't move it to the side at all, and it is extremely painful if I try. To fix it I bend my knee, pull my leg up toward my chest, pull my pelvis back, and then turn my knee outward. Then I hear popping sound, and my joint is comfortable again, and I am back to my full range of motion. I don't know exactly what is going on, but something gets loose and then gets put back in place. It is one of those things that I've never asked my doctor about because it is a small nuisance in comparison to other things. I'd be willing to try the exercises you mentioned if that might help to keep things in place. When I was 12 and was first told that I was too flexible, it didn't seem like such a big deal to me. I knew a lady who was also hypermobile, and she told me that it would cause a lot of problems down the road. And, yes, it definitely is causing more problems as I get older. And I'm still in my 20s! (just barely, but I am!) Rachel

Hi Lina, Thanks for checking in! It is good to hear from you again. I'm glad to hear that you have seen some improvements, and I hope that your health continues to improve for you. All the best, Rachel

Thanks for sharing this article with us!

I have never tried an abdominal binder, but I do wear compression "shorts." They go from mid-thigh up to my waist. I have both Spanx and the Work-It brand from Wal-Mart. I actually like the Wal-Mart ones better. I do have some waist high compression hose, but it was too much compression on my abdomen, and it became painful. I now wear the compression shorts paired with knee high compression hose. I have stopped wearing the compression hose on the really hot summer days because it keeps my legs so hot that the compression is no longer beneficial for me. My temperature regulation issues are worse than my blood pooling issues, and I feel worse with the hose on if it is above 75 degrees. On the hot days I can still wear the compression shorts, just not anything on my legs. I like to wear cotton or linen skirts in the summer. They are so much cooler than pants, and they keep the compression shorts covered up. Sometimes I wear capris or bermuda shorts with the compression shorts. No one can tell that I'm wearing compression, and I stay nice and cool. My insurance doesn't cover any type of compression garment, but you can check with your insurance. They may very well cover it with a prescription from your doctor. Good luck with staying compressed and stylish and cool in the heat! Rachel

That happens to me sometimes too. When it does, I stop eating so much salt, or I just get it in the form of Gatorade, which doesn't burn my tongue. Another option is salt tablets. If you have enough food in your stomach then you can just swallow a salt tablet. Then you get the salt, but don't have to eat such salty food. I hope your tongue feels better soon. Rachel

Thanks for coming back to share some good news! I'm glad you found DINET 5 years ago when you needed it. Rachel

I have a cooling vest that I wear anytime I step outside on a warm day. It helps me a lot. Sometimes I also wrap a small wet towel or scarf around my neck. I haven't heard of a medication that helps with heat intolerance. Rachel

I would definitely give your doctor a call right away. If you did get tetanus from the bite then you need treatment very quickly. I hope it heals soon for you. Rachel P.S. All of our sensitivities are different, but for what it's worth, I had a tetanus shot a couple of years ago and didn't have any problems.

If Kayjay isn't up for checking on the forum right now then she might not see this topic. You might want to send her a PM, and that way she'll get an email notification about it. I hope your trip went well Kayjay! Rachel

A healthy body does everything possible to keep blood flowing to the brain, but we aren't exactly healthy. The autonomic nervous system controls blood flow, and when it doesn't regulate properly you might not get adequate blood flow to your brain. I have had some bouts of really severe brain fog. It was so bad that I forgot who my son was when I saw him, I didn't recognize my apartment, I could barely communicate, etc. Lying down didn't do a whole lot to relieve the brain fog. I spoke with a couple of my doctors, and they believe that the brain fog was due to a lack of proper blood flow to my brain, even while lying down. Dr. Grubb said something like, "If the system doesn't work right when you are standing up, then it doesn't work perfectly when you are lying down either." Nothing cures my brain fog, but Cerefolin sure does help a lot. I take it daily, and it makes it easier for me to keep up with conversations with my family, read, and write. Rachel