Dizzy Dame

Jan,

As always, you and Jeff will be in my thoughts and prayers. Hopefully the luncheon will be fun for him.

Hugs,

lauren

Jaquie,

I'm getting a bit concerned since you've been posting for awhile about your horrible headaches. I can't remember if this was brought up before, but both florinef and midodrine can cause headaches if the dose is too high. Florinef can actually cause the brain to swell if used improperly.

Have you spoken to the doctor that's prescribing these meds? While it sounds like you're having migranes, it would probably be wise to rule out your medications as the culprit.

3,000 words in 13 days DOES NOT sound easy especially with all of your horrible symptoms.

Keep at it though, as I know you will. Hopefully your health will improve a bit once you can get some rest! I still marvel at how brave you are.

Persephone, your campus is beautiful! It must be so magnificent to be going to school there

Your hospital trip sounds horrifying though! Perhaps you should talk to your doc about raising the dose? Hopefully you'll start to feel better soon!

Hugs,

Lauren

Hi All,

Right now I'm down in North Carolina and I just saw the lyme disease specialist this morning. The doctor was one of the most caring and compassionate physicians I've met, and spent several hours with me going over my medical history and symptoms. He also did a very thorough physical examination.

At the end of the appointment, he told me that he's pretty sure I have lyme disease, with a likely co-infection. However, because my bloodwork has been indeterminate (I had a quasi-positive lyme test, but it wasn't a full positive), he said the diagnosis can't be firm until we do some more tests and see how I do on antibiotics.

Despite the fact that lyme disease is not a pretty diagnosis, I feel very relieved that I FINALLY have an answer to what's going on with me, and, with a lot of luck, I may completely recover from this horrible illness. However, I feel it's too soon to throw a party...I've got to see how I do on antibiotics first.

I just wanted to give an update, since I know many here are or have been diagnosed with lyme disease. I know it's a controversial issue, but I truly feel my diagnosis is the right one.

I'd also reccomend that anyone who may have been bitten by a tick, and doesn't have any known cause for their POTS be checked for lyme disease. Lyme disease can cause POTS, so it's a good thing to rule out, ya know?

So that's what's happening. Of course, I'll update everyone as I begin antibiotic treatment, and I'd be happy to answer any questions (if I can answer them).

I also wanted to thank all the wonderful members on this forum who mentioned lyme over the past few months. If it wasn't for those posts I wouldn't have begun to research lyme disease, and probablly wouldn't have ever made it down to NC for the diagnosis. This forum has been so important since day one, and I can't even begin to say how much it's meant to me, and continues to mean to me.

Lauren

Happy Birthday Dionna!

I hope your day is wonderful and symtom free!

-Lauren

I think that if you're not satisfied with the tests performed, or if you feel you'd like a second opinion, you should persue that. Given all your health problems, I wouldn't discourage you from finding a doctor to perform an EMG. My autonomic tests, for example, are mostly normal (aside for the tilt), but my single-fiber EMG is positive.

You tested positive for peripherial neuropathy with the sweat test, so it makes sense to me that someone should explore how bad that neuropathy is by conducting an EMG...it's a relatively cheap test so why not?

I tend to look at doctors as consultants. I've done enough reading in medicine to feel like I'm able to understand my own situation fairly well, so if I feel a doctor has overlooked something with my health, I find another doctor to do what I need/want done. It's been a matter of survival for me to have this attitude, and I can tell you that had I listened to every doctor and not asked questions, I'd still be bed bound.

You know your body. If you feel you want other tests done, I'd say ask about them.

Thanks all for the good wishes!

My birthday was wonderful...practically symptom free. I watched movies all day and then my BF and I went out to a local restaraunt where I could put my feet up as I ate. Pretty low key...which is how I function best.

Thanks again!

Awww! Thanks Emily and everybody for remembering!

I'm just waking up so I don't know what the day will hold yet, but I'll let everyone know how it goes

I was bedridden for the first six months and it was more than 8 months before I started seeing signifigant improvements, and I still have a ways to go yet. Many with POTS recover quickly, but there are many who also need months or years to improve.

Just keep fighting! If your meds aren't working well enough, ask your doctor if you can try something new or a different dose. I know I'm still fussing with doses and I've been sick for more than a year now.

Happy Birthday Em!!!!

You and I are both October babies (mine's the 12th).

I hope your day was relatively symptom free

I'm so sorry you're going through this! I can't imagine being in your situation right now, just know that all of us are here to support you. And at least you found out about him before the wedding. Can you imagine being married and getting that news? Still, I'm sure that isn't any consolation.

I know if you can survive having POTS, you can survive this, and you'll be stronger for having lived through it.

((((HUGS)))))

Also, I hate to be the one to say this, but not everyone "gets better" with medication. You may want to prepare yourelf for a long road to recovery. It may be more a matter of months than a matter of weeks before you start to see improvements, and you may need to be on more medications or different medications before you start to feel better.

I'm just saying this because when I was first diagnosed everyone was like "oh, you'll be fine in a month", and when that didn't happen it was devastating. But hopefully the florinef will start to make a difference for you!

Have you had a chance to see a cardiologist or neurologist, or are you still working with your GP?

I'm going through the same thing right now. Since starting Mestinon and PT in August, my health has improved considerably...I'm at a 4-5 most days, and a 2-3 on my bad days. I've been picky about who I tell. I've told most people that I'm doing a little better than normal, but a few of my friends and family know the ins and outs of my improvement. These are people who also know that at any minute I could go downhill, and understand that just because I get sick again, doesn't mean I won't get better again in the future.

It is SO difficult having a chornic condition like this, and I can definitely relate to your worries about crashing. I'm terrified that I'll catch a cold or something that will put me in bed for months.

I think autonomic neuropathy is technically a form of peripherial neuropathy. Some members of this forum have both autonomic and sensory peripherial neuropathy (I, for one, am one of those people).

There's a great, free, downloadable handbook that goes through all you ever wanted to know about the ANS and it's dysfunction at the NDRF website. I've posted a link below.

http://www.ndrf.org/NDRFHandbook.htm

This book should answer many of your questions. I know it helped me alot when I was first diagnosed.

Hi all,

(I wasn't sure if this is a "chit-chat" post or not...but hopefully it's in the right place.)

I'm like many of you and can't handle harsh odors or chemicals. Even air freshiners make my sinuses clamp shut. Since getting sick, I've missed having scented candles to make my house smell yummy, but a few days ago I was talking with my boyfriends sister and she told me a few natural ways to freshen the smell in my house without having to use any chemicals at all.

Basically I take a small pot of water (about 1-2 cups) then put in a few shakes of cinnamon, ground clove and nutmeg, then put the flame on just enough to keep it at a low boil. Viola! Within 10 minutes, the whole house smells like christmas, and it's not a harsh odor at all, it didn't make me dizzy even for a second!

Of course, I don't leave the stove unattended for more than a few minutes, but the pot only needs that long to perfume the whole house. Then I turn the flame off and set the pot aside.

I've been doing this twice a day for the past few days and my house now smells so wonderful...especially since we're having cold weather, the smell of cinnamon is particularly nice this time of year.

Anyway, just thought I'd share that with the rest of you who can't handle harsh smells, but want your house to smell pretty.

Ouch Persephone! I'm sorry you had to go through so much trying to stop your period.

I briefly gave a hysterectomy some thought a few months ago, but decided to try the continuous BC first to see if it'd help...a person who wants the procedure can get their eggs harvested beforehand, so it isn't a matter of choosing between a family or better health.

BTW: I'm so glad you've been doing better on the new meds. Now you can have some proper fun at Oxford before you become too educated and famous

Is there any way you could find another job? Your work environment sounds like it may cause problems for you, paticularly the standing in one place all day.

My illness follows a cycle of being bedridden to functioning extremely well; it usually runs every 3 months on a big scale. but is heavily influenced by my menstrual cycle.

Persephone,

Have you thought about trying continuous birth control? I'm doing a "two periods per year" thing right now and it seems to be really, really helping.

...just a thought

I have many of the same symptoms you have when I'm off medication. My systolic BP usually drops 10-20 points when I stand, and I get dizzy, lightheaded etc. I'm on two medications that help constrict the blood vessles, and I can say without them I'd be bedridden, or close to it. On my meds I'm a part-time student, and while I'm still pretty darn disabled by my symptoms, they're nowhere near as disabling as they would be if I were med-free.

So the answer to your question is a quasi-yes. For many people with your symptoms, medications do help. But everyone is different, and you won't know how you'll do until you and your doctor begin testing things out.

Hi John,

A systolic BP falling more than 20 points upon standing qualifies you for orthostatic hypotension. Plus not all autonomic patients are hot...I've met several who are cold all the time (from the low BP).

I'd recommend seeing a neurologist or electrophysiologist (a type of cardiologist) right away to evaluate you and hopefully get you on some medications that can raise your BP. Salt and fluids can help to expand your blood volume, but there are many drugs on the market that can help even more. Plus, the symptoms you're experiencing can be a sign of many different disease processes, so getting everything looked at by a physician who understands the ANS would be very good.

We've all been where you are now: confused, sick and scared, but we're all here to help answer your quesitons, and to let you know that you're not alone.

-Lauren

Hopefully the thing they saw on your CT scan was just a fluke. You'll be in my thoughts!

-Lauren

I was bedridden for the first 6 months of my illness. Since then, I've made a slooooooooow recovery and today I'm in school part time.

I think the medications are mostly responsible for my improvement. However, I still have slumps where I'm very sick, sometimes bedridden, for weeks or days despite my meds.

I don't think I did anything that you're not already doing. I keep my sodium up, eat properly, exercise when I can (even if I can only do a few leg lifts), I try to have days of rest in between active days, and I only schedule one "thing" per day. For instance, if I go to class, I don't do anything else that day. I also try to only be out for a few hours at a time.

Have you thought about trying different medications to see if there are any that may improve your quality of life? I know midodrine and mestinon have been life-savers for me.

-Lauren

I'll give you my understanding of the two, but you may want to do some research on your own to double-check:

Mastocytosis, as Lucky Charm said, is more rare and more serious than Mast Cell Activation. It can often be associated with anaphylaxis, and severe cutaneous (skin) allergic reactions. In the case of Mastocytosis, there is no allegin causing the attacks, they occur at random and can be life-threatening in bad cases. A nurse I talked to at Vanderbilt said she'd met people with bad Mastocytosis who have anaphylactic reactions daily and have to have several epi-pens on hand in order to function...of course, when you're that sick the definition of "function" isn't much. Mastocytosis is also assoctiated with Mast Cell Leukemia in some cases, but there are many different kinds of Mastocytosis, some are less serious than others, but all are extrememly rare.

Mast Cell Activation occurs when the body randomly flushes itself with Mast Cells. It presents as "flushing" episodes where BP and HR go up and the face and body flush for a short period of time. Shaking and sweating are also commonly seen druing these episodes. Vanderbilt did a study a few years ago and found that MCA is sometimes seen in conjunction with POTS for reasons they don't understand. Many people with POTS have flushing episodes, and while some with flushing don't have MCA, many test positive for it. It's treated with a type 2 antihistamine (such as Allegra).

I get the flushing episodes that are associated with MCA. Although I get them so rarely they aren't much of an issue. I've been tested for MCA, and tested negative, however, I've never been tested during a flushing episode, which is the optimum time to be tested. I wouldn't be suprised if I had a mild case of MCA...but like I said, the episodes are so rare that I don't really worry about them.