potsgirl

Sorry, Radha~ I've never even heard of it.

Hi Serena,

My boyfriend is a high school teacher, and he deals with quite a few '504 kids'. Several of them leave the classroom to take tests; they go to a special room that is quiet and less anxiety-producing. I know he works closely with the school counselor to try to meet the needs of these kids. Is your son's school counselor involved in working with his teachers? Re the reclining...I could see where that would make him feel like an outsider, and during junior/senior high, that's exactly what kids don't want to be. Those 90 minute classes are tough, though! I've done some subbing, and they get loooooong. I couldn't do it!

Anyway, I would try to work with the school some more, and see if his new meds continue to help him. Just my opinion, but I would home school as a last option. He's getting valuable social skills (not saying home schooled kids don't) and gets to feel 'like everyone else'. Very important at this age!

Best of luck to you!

Cheers,

Jana

ps....i'll see if any of the teachers i know have any other ideas....

Hey Erika,

I have had a lot of luck using Paxil. 20 mg is usually the starting dose, but I can't take that much because it makes me too groggy the next day and lowers my BP too much. I take 15 mg, which is just right for me. I think I started at 10 mg, then increased it to 15 a couple of weeks after. I've been on it for about 10 years, and it's been good to me. I also take a very small dose of Klonopin. Good luck!

cheers,

jana

F'watcher & Erika,

Erika's story reminded me of the time when my son was about 2 and I was a smoker way back then, and he ate a cigarette butt out of the ashtray. Talk about panic! I was sure I'd poisoned him and had the poison control hotline on the phone within seconds, crying and carrying my son close to my chest. All ended up fine, but I sure remember how horrible I felt about leaving the ashtray where he could reach.

Maxine,

What a complete waste of time for you and your husband. I'm sorry that your experience was so frustrating and that we have to search so hard for good doctors who actually understand our symptoms and know what we're going through. Big hugs your way!

Cheers,

Jana

My suggestion: Do Not Give Up! Get a lawyer and fight this. The suggestions on here are great - getting character references and also make sure you get statements from your doctors on your levels of functioning at home and as a parent. When I got divorced, we both wanted custody, and the first thing I did was get a lawyer so that my ex knew I was serious and going to fight him until the end (and I couldn't afford an expensive lawyer, either). It ended up with me having my son full-time, and his dad having visitation rights.

Being a mother, I know how strong you must be. Don't give up and cry. Get on that phone and find some help and get those kids back into your life. We're rooting for you!

cheers,

jana

I'm so glad that you have an appointment made with Dr. Goodkin. From what I've read on the Forum, he sounds like a terrific doctor. I know it seems odd, but two of the drugs of choice for most docs treating POTS is Florinef and Midodrine, and since POTS people almost always struggle with high blood pressure, I'm guessing he may want you to try those, too. They're not drugs just specified for patients with low BP, since the majority of POTS patients have high BP. Doesn't sound right, does it? Weird, but true.

Good luck! I really hope this is the right doctor for you. You deserve a break, Ms. R.

Cheers,

Jana

Oh, Firewatcher, you're being much too hard on yourself. You are obviously a wonderful mother and it hurts you greatly that you made your son temporarily ill. We all make mistakes, some big, some that are inconsequential. But you did not do this on purpose, and you have only what's best for your son in your heart. I think a lot of us have made some pretty major mistakes when we're out in the fog, and I know there are times when I have to ask someone else to make sure I've made the right choice or done the right thing with meds, etc, etc.

Please forgive yourself and know that no real harm was done. I'm sure your son knows you live him greatly. I'm sending a big bear hug your way!

Be good to yourself,

Jana

Congratulations! You've uncovered one of the aspects of your illness. That's a huge hurdle in itself. Good luck with your new meds and water intake...And buy something cool for yourself with all those saved TP $$.

Cheers,

Jana

That symptom doesn't sound familiar to me at all. Perhaps it would be best if you called your cardio about it...

Good luck,

jana

Just a note from someone who's a little older....I raised my son as a single parent, and finally went back to school full-time to finish my degree at the same time he started on his - same school, even! I went on to get my master's degree in 2003 in anthropology/archaeology, which was my passion. I moved to Arizona, where I worked as an arch for an Indian tribe along the Colorado River, which I loved. I then moved to Tucson to be with my boyfriend and take an arch 'desk job' with the county. I had just been diagnosed with heart disease, got a pacemaker, and worked for the county 10 months (my dream job) before I got hit with POTS. I had envisioned working there for the next 20 or so years, with great retirement benefits, etc. I had to leave and have been unable to work for the past 2 years.

I don't know if it gets easier if you're older - it sure didn't feel that way to me. I loved my profession and job, I loved my life. I think most of us go through a major grieving period when we struggle to redefine ourselves when we can't work. I'm like you - at the time, it's who I WAS. But you can't let your profession define you - there are so many other aspects to a person, and other things will now open up to you once you go through your grief and come out the other side. Also - there are certainly POTS/dysautonomia sufferers who do get better! Don't be too quick to give up your careers....

You have all my support, and you'll find you have more strength than you ever thought possible.

Cheers,

Jana

Alicia,

As far as I understand it, dysautonomia is an 'umbrella' term for different types of autonomic system disorders, which includes POTS. Please take the time to read about POTS and associated disorders on the DINET website, and look up the NDRF website as well. It sounds like perhaps some reading and research is the best way to answer your questions.

Take care!

Jana

Great info, Jan~

Just wanted to add that with OI your BP drops significantly upon standing (mine goes from about 90/60 to high 60s low 70s/high 50s), while you HR increases dramatically (60 supine to 120-140 standing). This is definitely one of the areas you get into trouble with syncope.

I'm definitely an 'ab bloater', but my bloating tends to be in my lower abdominal region. Also worse after eating...

Dear Erika,

I'm sorry that you're going through such a difficult time right now. Being sick and having 2 kids certainly adds substantially to your stress load. Allow yourself to grieve, because you are suffering from a great loss. And take time to take care of you. Be good and gentle to yourself. I believe that all of us have an inner strength to draw from, and that it comes out at times like these. You will get through this, because you are a strong and capable woman, with many people who are supporting you through their thoughts and/or prayers. And hey - I'm 47 and met a great guy just a couple of years ago who is tremendously supportive...you're by no means over the hill at 46! Plus, you're going to feel GREAT once you get through this period by yourself and know you can do it all by yourself!

Thinking of you,

Jana

I went through a 2-3 month period where I would have incontinence with my bowels like that. I would always be standing, and then I'd suddenly have to go - and it was too late to get to the restroom. How embarrassing! My neuro thought it was related to my POTS, and thankfully, after about 5 or 6 episodes it hasn't happened again. It can signal some other CNS difficulties/diseases, though, and like sue 1234 said, perhaps Addison's. If it keeps up, I would definitely check into it.

Good luck,

Jana

Hi Becky,

You may want to do a survey on this - multiple choice with questions...I am your age, and was diagnosed with low flow POTS/OI a little over two years ago. Three years ago, I was diagnosed with cardiomyopathy and congestive heart failure, so I wear a pacemaker and have that problem also in the mix. I can't tolerate Florinef or Midodrine, so eat lots of salt, drink tons of water, and electrolytes (Nuun). I feel better than I did when I was first diagnosed, but not by much. I'll have a good day here or there, but right now I'm in a long 'down' cycle.

I think you'll find that there's a lot of variation between all of us. I think that young adults are expected to improve at a much greater percentage than adults. Also - your statistics are a little confusing. Could you please clarify? Thanks!

Cheers,

Jana

There are several good places on the net to research drugs and common reactions. "Webmd.com" is one of them, as is "drugs.com" and "rxlist.com". I did a quick look, and found that common side effects of Doxycycline are: nausea, diarrhea, stomach pain, indigestion and heartburn, loss of appetite. So yes, I would say that there is probably enough of the drug left in your system to be causing your symptoms. They should subside gradually...I don't think a call to the doctor is warranted unless this persists for another couple of days or becomes severe.

"Webmd.com" also gives you a listing of patient feedback (as do some other sites) on almost every drug you'd like to look into, which is a great help for me. If you don't see a particular side effect you're experiencing from a certain drug, type in the drug and the effect you're experiencing in your search engine: (example) 'Paxil chest pain'. Usually there isn't enough room for these sites to cover every side effect, just the more common or very serious ones.

Hope this helps! I also look up drugs before I start a new one, or to see if one I'm already on may be causing the symptoms I'm experiencing.

Cheers,

Jana

I'll second Ramakentesh's thoughts on exercise. My doctor's have told me to never stop moving, the more moderate exercise I can tolerate, the better. I know this is certainly not true for everyone, but it is for me. I was in pretty good shape when I got sick, and I believe it's helped me along the way. I did try a sleep med when I got desperate, but it had the opposite effect on me.

I had a similar reaction towards the end of each 4 hour period when the Midodrine effects were wearing off. It gave me more energy for the first 2-3 hours, and then wore off. I didn't notice any appreciable difference in my BP, though. It works wonders for many, but not for all - like many drugs.

Ciao,

Jana

I am 100% behind your statement of "I can hope that things get better, but I have to plan on things staying the same". So true! We've been dealing with that lately with finances and other life changes that are coming our way. I don't want to set myself up for a fall, so I plan things realistically as they are right now, and hey, if something better happens down the line, than terrific. If not, at least we're prepared, and that gives me peace of mind.

Good luck in your changing to a more simple life. I bet it gives you a lot of happiness.

Cheers to you and your courage - and husband!

Jana

Many people have the TTT numerous times. Why not try it again and see what happens? My BP drops significantly when I stand, and my HR doubles or more. I have POTS/Orthostatic Intolerance.

Erika,

I think both Janey and Erik's responses are very good, but I wanted to ask you if your doc also recommends eating a lot of salt? Along with salt loading, you need water loading, to help keep your kidneys and your overall body functioning well.

Way to go with the walking! I truly believe that if we all do the best we can at our own level of exercise, it can only help us in the long run. For those who are bed and chair-bound, even lifting a few light weights helps, or some leg lifts if you're able. Whatever you do, kudos!

I have the same experience that I can walk the treadmill for 2-3 miles, but am totally out of breath walking up a flight of stairs or trying to stand in line for very long. It doesn't seem to make sense, does it? Also, I can't walk as far say, in a crowded mall where there's too much stimuli going on around me. I usually take my wheelchair there. Hiking is also difficult if there's an incline - I haven't tried it in years. I'm trying to work on increasing the incline on my treadmill, though. I always drink at least 20 ounces of NUUN water during my workout.

Cheers to all!

Jana

If you're urinating frequently during the night, you may be suffering from interstitial cystitis or another urinary problem. If you still have frequent urination at night when you're not having an 'episode', it may be worth checking out. I was surprised to learn that I had it.