worththewords

I get them more on my left side. My doc suggested to me sleeping on my right side if I have to sleep on my side.

If funding was there, I think a conference would be great.

I thought I had chimed in on this post but I guess I haven't.

I'm a full-time online student in college working towards my degree in psychology. This has allowed me to continue school. I work harder on the days I feel well so that on the days I don't feel well I don't even have to log online. My school does have deadlines but I've never had a problem meeting them.

I know I can't do much with a bachelor's degree in psychology but I've found a master's program that is also all online. Once I get my bachelor's though I plan to get my teaching certificate and teach at Florida Virtual School while working towards my master's. It's an online middle/high school for all school districts in the state of Florida. I really encourage anyone who needs to work from home to look into jobs online if you are in need of one.

Also, if you hold a bachelor's or are working towards it in any subject, you can apply at tutor.com to tutor kids in subjects of English, Math, Science, or Social Studies from grades 4th - College. They pay $10-14 an hour and you can work between 5 to 30 hours a week - it's all up to you. The hours are from 2pm - 1am and you pick your own hours. I'm going to be doing that in the fall to make some extra money.

I've thoroughly researched many at-home job opportunities so if anyone has any questions feel free to PM me.

i was on allergy shots for about a year & they were taking the edge of at least the worst seasonal/outdoor allergies but i had to stop them when i started a beta-blocker....too risky especially since i did have one scary reaction to a shot once.

Did you have the scary reaction to the shot when you were on the Beta Blockers or just on the shots alone? I know you aren't supposed to take a Beta Blocker and the shots together, which works for me because I'm allergic to beta blockers. Just curious about your experience with the shots and if you would recommend them. I'm supposed to be starting them soon.

Alexia

It's so exciting to see the meter move closer towards the goal each day!

Only $135 more to go to reach the goal!

I've been on Nasonex for a couple years. Interesting to hear that it causes BP to drop. I typically only use it at night. I use it in the morning if my allergies are really bothering me but I haven't noticed any problems. Although, I would be interested in trying something different. From time to time I have to go off the Nasonex because it starts to give me nose bleeds. I used the gel simply saline to combat the nose irritation from Nasonex and IT caused irritation!! I find the gel Ayr really helpful but it is hard to find.

I take Zyrtec year around and recently added Singulair as well. I'm having my skin test repeated on Tuesday because I will probably be starting allergy shots soon. Living in Florida there always seems to be something in bloom year around that keeps my allergies acting up. My allergist felt that if we could tackle one problem that would be one less thing for me to deal with.

I had a horrible reaction to Clarinex - palpitations, swinging blood pressure. It was given to me by my ENT who thought it would be better than Zyrtec. My allergist thought that was absurd and knew that some people had problems with their blood pressure while on Clarinex. Glad to be off that!

I was working in the music industry when I started getting very sick and eventually diagnosed. I had to quit due to the stress of the job. It was a very high stress job and highly demanding. I noticed I did start to feel somewhat better when some of the stress was out of my life.

I tried other jobs but soon found that it was just too hard to be reliable considering how unpredictable this condition really is. Some days I can wake up and have a good day. Other days I can wake up and need to just go right back to bed.

I'm a full-time college student now, taking all of my classes online. I'm sure whatever I end up doing with my degree I am going to have to do for home or have a very flexible schedule.

It has almost been 3 years since I found this website after being diagnosed with POTS. In fact, it?s the first website I found that offered me any insight and tips on how to live with this condition. In addition, I found tremendous support from the forum that I wasn?t able to find anywhere else. Even though I waited awhile before officially joining the forum I would ?lurk? and read posts. For me this site filled the void of loneliness that sometimes occurs when you have a condition that most people do not understand.

I?d like to take this opportunity to thank everyone who makes DINET possible and my fellow-members who make this forum a place to find information, comfort, and even a smile. To show my appreciation I will be making a donation to DINET.

I noticed that this forum has over 800 members. I?m not exactly sure how many of those members are active but if we would all make a small donation to show our appreciation I bet we could really help DINET continue to raise awareness and educate others on dysautonomia.

If you have $10 or more to spare you can go to donate through Network for Good online and donate by online check, debit card, or credit card. If you can?t spare $10, mail any amount you can to DINET. All donations will be beneficial.

You can find information about donating here: http://www.dinet.org/how_you_can_help.htm

We have the silent auction coming up this summer to raise money for t-shirts. Let?s see how much else we can raise by just showing our appreciation for this forum and website!

~Alexia

I haven't been diagnosed with EDS but I do have some of the symptoms. It's one of those things that I just haven't gotten around to talking to my doctor about. I give my doc enough to deal with for now.

I didn't vote since I don't have it, but I hear often that I look younger. To which I reply, I guess it will pay off when I'm older.

I got them after Mayoclinic suggested it for me a couple years ago. I live in Florida and found that wearing them only made me even more hot plus they are such a pain to put on, uncomfortable, and well not the most attractive things. They are now stuffed in a drawer.

I told my doctor at Mayo my feelings on them and it's actually in my medical records that, "Patient found compression stockings to be cosmetically unacceptable." I had to laugh when I read that.

I hear they really help people when flying so I might try them sometime. I hope they are helpful to you!

I know some POTS people take Claritin over the counter but I would really, really check with your POTS doctor first. I tend to have bad reactions to almost everything over the counter. I take Zyrtec and Singulair for my allergies, which was prescribed by my allergist and the doctor overseeing my POTS approved them. I live in Florida, it's allergy season year around here for me. I'd really check with your doctor before taking anything.

Thank you both for information. Claire, I sent you a PM.

Thanks again!

I've been exhibiting many symptoms that are pointing to a gluten allergy. I have a lot of abdominal pain and other GI issues with anything involving gluten. I have iron deficinency anemia and now my liver enzymes are acting up. I had the bloodwork done which showed I was borderline for a gluten allergy. To confirm, one of my doctor's wants me to see a GI and have an upper endoscopy. However, it takes about 2 months to see a GI here. My doc has suggested I go ahead and become gluten free as he said he would be really surprised if I don't have a gluten allergy.

Wheat is in everything!!! I live with my fiance and we are both in college. Let's just saying cooking a well prepared meal just isn't on our list of priorities. We are going to give it a good try though. Any good websites anyone can suggest? Or cookbooks?

Any further information would be appreciated!

-Alexia

I was just logging on here to ask the same question! I am going to need an endoscopy done soon to see if I have an ulcer and to see if I have a gluten allergy/celiac disease.

Michelle,

I sent you an e-mail about fundraising. Hope you got it.

-Alexia

Is there a certain letter anyone has set up that has been sent out to some of these programs?

I'll be sure to call Mystery Diagnosis.

Thanks for all the replies.

I do use Nasonex but I can't use it year around. I have to take a break from it from time to time because it does irritate my nose. I don't think Nasonex alone though could control my allergies and I see to be way too immune to Zyrtec it seems.

I am going to make an appointment and probably give the shots a try, as soon as I get the a-okay from my cardiologist who handles my POTS.

I have a ton of environmental allergies such as pollen, dust, just about every single thing that blooms, etc. and I live in Florida so they drive me crazy year around. Despite taking antihistamines, I am still battling with my allergies.

I can't take Benadryl, it doesn't agree with my POTS. I also can't take anything with a decongestants because that aggravates my POTS as well. Claritin never helped. I take Zyrtec but it just isn't doing what it should be doing at this point. I tried switching to Clarinex but had a bad reaction.

I spoke with my allergist and he has suggested allergy shots. He doesn't think they will bother my POTS and if anything, give me once less thing to deal with once the shots start to work. My allergist doesn't believe it will cause any trouble but you never know with POTS.......

Just curious if anyone else gets them and what your experience has been!

Thanks in advance.

I definitely snap, crackle, and pop too!

Michelle,

How much more $ do you need at this point? I might be able to help.

Alexia

I'd really like to participate in this. I was diagnosed with POTS at Mayo in MN but I didn't see Dr. Low. He was the doctor who did read my autonomic tests though. I wonder if I would be eligible. Does anyone have contact for Dr. Low's office?

Without fail, whenever I wake up I have palpitations. I've just started to assume that these are some sort of "surge" or startling of my nervous system. My doctors seem to ignore this when I complain about it.

I have also been getting the "shake awakes." It's interesting to hear a medical term for it. I'm not sure if that is what I have but I will be talking to my cardiologist about it on Thursday. Occasionally when I wake up I feel this strong internal shaking/tremors, sometimes my hands and legs are shaking. They don't last too long but they are definitely bizarre. I talked to my neuro about it, thinking he would be the one to address it. He asked me if I'd like to take Zoloft for this anxiety. I tried explaining that I was not anxious when it occurred, I was just concerned about it. I don't think I'll be seeing him again. He claims to understand POTS but apparently this probem is "all in my head." I don't need a doctor like that! I also get the jumps in my sleep, especially when I'm trying to fall asleep. I wish someone would just thoroughly explain to me what is going on so I know whether or not it is worth worrying about.

Any more insight on these problems are always helpful!

ice cube or fire ball? I might have to try that sometime. I hadn't heard that one.

Depending on the time, I will turn on Cartoon Network or Nickeloden. I'll only watch the news if it is weather related. Obviously hearing about upsetting news doesn't help! My fiance loves the food channel, which is what I fall asleep to. It's great because there is never anything upsetting on that channel. When I lived alone I would find myself falling asleep to more dramatic shows, such as something on CourtTV. What a bad idea!

Let me know if you ever find a solution! I just remind myself over and over that nothing bad is going to happen to me.

Take care!

Alexia

I really wish I had some pointers to give you and hope that others can chime in on advice. This is something I experience as well, a few times a week. Even if I just dream about something that is very intense or active in my dream. It's a horrible experience when waking up, dealing with the racing heart, and despite realizing it was just a dream, the heart racing continues.

I've mentioned it to my doctor before who tells me it's probably stress and I should cut back on my school load but it doesn't even have to be a stressful dream to kick this process off. When it happens I wait until I am stable enough to walk, get an ice pack to cool me off as I usually feel clammy. I will turn on the TV and watch something that won't provoke anymore heart racing. I had this experience this morning and woke up at 6:30am and watched the weather on tv.

These adrenaline surges seem to be getting worse for me overall. I really hope someone can give some pointers on how to slow them down or prevent them.

You're not alone, hang in there!

These are some great responses and ideas.

Personally, I would like people to know how very little we have control over our day to day life due to this illness. I can't tell you how I am going to feel tomorrow because I won't know until I wake up and attempt to start my day. I wish people could understand how frustrating it is to have your health dictate so many things in your life. Everything I do revolves around how I am feeling at that particular moment. If I stop too long to think about how much control it has on my life, it can be very upsetting. I do my best to live my life the way I want to, even if that means I am in a tug of war mentally and physically with my health.

I posted this to really just hear/read what everyone thinks that the majority of others miss when it comes to understanding our illness. I would like to have more of these discussions. I think it's important that we have a voice. Even if, for now, it's only through a discussion board.