Roselover

Been there!!!!!

Try holding the arm with BP cup up level with your heart with your other hand. Relax the one with the cup. (like they do in the office- ya know how they hold your hand under their arm?). This often allows me to avoid the error sign. ( I wait until it's almost completely blown up, then lift my arm and relax it into my other hand....does that make sense?)

~Roselover

Now, see for me, Ultram/Tramadol did nothing for me... we are all so different in how we react. Talked to someone yesterday who can't take codeine or vicadin because he starts throwing up. But Vicadin is my friend! Poor Tearose - she just needs relief NOW! I feel for you girl - hoping this night is better and your doc has suggestions tomorrow!

~Melanie

Oooo, I'm probably too late in answering this for you Tearose - all the above adivse it good. But let me add my 2 cents in case it helps. Vicadin affects me very differently than Tylenol with Codeine - doesn't slow me down or my HR as much as the Tylenol#3. Actually makes me happy and chatty and alert! Also, you might try an antihistime called (shoot I can't remember I think it's hyocystamine) that is used in hospitals to enhance the work of a pain killer - so you would take it with the tylenol. It may make you sleepy though. I also have been told that Clonazapam or Valium can help deal with pain, though they don't remove the pain. Just a few more suggestions - though you don't have lot of time for trials do you?

Good luck!

~Roselover

Haven't noticed feeling faint with yawning, but I do if I stretch - even when still in bed lying down.. BUT, I do notice the faint feeling with coughing and sneezing! I can sing for a few minutes and then I have to stop because of lightheadedness.

~Roselover

I've seen Corina's cards and everyone should be very excited and saving their money!!!!!!! They are FANTASTIC!

~Melanie

Pooh I thought your post was very clear that you were just researching. It is very true that you must have lots of info in order to begin any sort of grant writing. I think it's great that you're thinking of doing this. There must be many places out there who would support us with grants if only we had someone to go through the effrot to find them and write out the grant requests.

I'm sure Michelle just wanted to make all that clear to someone who hadn't read the whole post. I'm putting words in her mouth, but that's what I'm guessing.

~Roselover

I markde Advocacy for patients because everytime I see a doctor I have to try to explain why a treatment is used for POTS/Dysautomia but how it use differently. This is hard and frustrating.

On the other hand, my second and equal choice would be medical materials because I have a hard time finding and understanding all the information out there and then squeezing it down into something I can give and explain to my doctore in a 20 min appointment!

Thanks for asking Pooh!

~Roselover

Poohbear,

I'm on domperidone. It has been a miracle drug for me concerning nausea. I also eat much better - still careful with fiber, small meals etc. I was hospitalized three times for flare up with pain, nausea and no fluid intake before starting domperidone. I've had quite a few flare ups on domperidone and they were very handleable, I kept in fluid and made it through just fine with no hospital!

As for side effects - none - except as sunfish mentioned - just the smallest amount of lactation, but not enough to be any problem. No breast pain or anything.

And if you read the research carefully, the heart problems were in older people who already had heart issues and were given domperidone through IV and it was a very small number.

Melissa's right - the main reason it's not OK'd in the US is because it was being prescribed to help with lactation and it's the med is transferred through breast milk and it's unproved whether this is harmful or not. Because FDA couldn't controll this type of prescribing, they totally rejected it. You can read about this on the FDA website. I wrote them a letter expressing my need for this medication.

It's my life saving, miracle med for my GI issues - don't know what I'll do if/when the US really cracks down on importing drugs - which they are discussing in Congress. I'm writing my congressmen to encourage them to consider those of us who need this medication.

I will say, that it took a month or so for it to be fully effective and I do still have to be careful what and how I eat. But OH what a relief to be rid of the severe nausea that plagued me!!!!

I know not everyone has the same expereinces on meds, but this is mine on domperidone. I sure hope if you try it that you get some relief.

If you need to know how I order mine, PM me and I'll give you the details.

~Roselover

Tearose,

That's a very interesting idea. I don't have a heart rate monitor - just a BP monitor and I wouldn' be able to find it and put in on during one of these spells. BUT- I do not remember any heart pounding with it so this might be something to look into. There was a point a couple of weeks ago when I took my BP feeling week and my HR was 41 which I thought was very low. With my BB it usually runs high 50's to low 60's.

Thanks for the idea.

~Roselover

Oh, and I forgot to add - have no idea where my hormones are. Just had them checked by the OB and said they are all normal - estrogen androgen etc. I have a hysterectomy so don't really notice any hormone cycles.

I thought about an inner ear thing, but I haven't been sick, no sign of ear infection - don't tend towards those either. I am also in a flare of symptoms and have some other neurological ones going on - like face twitching and numbness.

I'm dizzy a lot and sometimes when I lay down it feels like the bed is rolling - but these two episodes threw me completely off my feet!

Yesterday it happened suddenly and I fell behind my bed and as things greyed, I worried no one would find me back there. I called out "Help" and my son (13) came in and said "Mom, what are you doing?". After I got up and laid on the bed we had a good laugh together. I figure you either have to laugh or despair and I'm tired of despairing so I'd better laugh!!!!

And yet - having these come on unexpectedly is no laughing matter when you start thinking about being out of the house or driving etc.

Thanks H and E for responding. And I'm glad to hear about your "wasted" vestibular testing E. I know it doesn't mean it's the same for everyone, but it does help me go slow with testing ideas from my Dr.

~Roselover (Melanie)

When I was a little kid, I loved spinning and spinning and then trying to walk and then falling over into the grass.

Well, in the last two days, I've had spells like this, but no... I wasn't spinning myself.

It's like all of a sudden the house is spinning like a carnival ride and I try to stand, but I can't and I fall over. Then as I lay there, the room spins around me and the edges begin to go gray.

I know, probably lots of you will say - oh yeah I've had that - but you know, with a new experience/symptom, it really helps to hear that.

If anyone thinks this sounds suspicious and I need to see a doc right away - let me know - but I already have an appointment with my PCP next week and I'll tell her about it.

It's a bit disconcerting, because I don't know when or why it hits which makes me even less independent - ya know?

Thanks for being here everyone

~Roselover

If you're having problems with your stomach slowing down, which many of us have, then you actually want to stay away from fiber because it takes a long time to empty out of your stomach. Do a google search on gasteoparesis and you can find some good diets that help with slow gastric emptying.

I believe -the common prescriptions are Zelnorm, Reglan and sometimes Domperidone (which is not available in the US)

If you also have nausea, the second two often help with this.

I stay away from fiber, seeds and nuts and sometimes have to go to a liquid diet for a few days. Boost is good and Instant Breakfast is good if you can tolerate either of these. When I'm really bad I really like Ginger Ale and Ginger Tea.

Hope this helps a bit.

~Roselover

The most helpful thing I've done is get a Swifer Duster! I used to use spray and a rag. Now I just keep the Swifer duster near by and can dust an area quickly with very little work.

I also have three kids and they help with the cleaning. Luckily, we started this before I was too sick to do much so it's clear that they would have to do it anyway. Two share the job of cleaning the kitchen and one cleans the bathroom. We share the other jobs and if I don't ask too often, they're happy to help with bigger jobs.

~Roselover

Well Corina, if you really make it to the US for that anniversary trip you talked about, and if you get to the Northwest, we'll do another one just for you! Actually, you'd probably have POTS get togethers all accross the US!

~Roselover

Hey Steph and everyone, we're supposed to meet tomorrow, but they are having free skiing and snowboarding up on Mt. Hood, so I think I'll go skiing instead.

LOL!!!! JUST KIDDING!

So, since we're meeting at the hospital, do we all get to have IV's together?

OK.... feeling goofy tonight...

See you all tomorrow!!!!

~Melanie

Nina,

I'm on Cymbaltal right now - but went from Wellbutrin (which gave me a week long migraine) to Cymbalta. Beverly at Dr. Grubbs office said they are having a lot of success with it if you can make it through the hump of getting on it. I was able to do that but saw no improvement in POTS symptoms after four weeks. So I thought that was that, but Bev told me to up it to 40 mg for two more weeks. The first few days were awful - my whole body was on alarm, but that has settled down and yesterday I felt better than I had for several weeks. Unfortuneately, today, I'm not so well so I don't know. I have another week to go to decide if it's even going to touch my POTS symptoms.

I am sleeping better on it, but I haven't noticed it helping my pain very much - it is known to help that. Guess I'm just weird.

Anyway, there's my expereince for what it's worth. Good luck, let us know if you decide to try it and how it goes. Your expereince makes me want to try Lexapro!

~Roselover

Setting up a party here at the bottom of the hole - cake and ice cream for all!

Happy Birthday Blondie, sorry I can't do better and wrap up a magic pill.

~Roselover

Diana, I had a bad reaction to Midrodine, so can't do that. But thanks for the info.

lthomas, thanks that's very good info. I knew the real problem was the pulse pressure - it's no wonder I can hardly function. I will talk to my doc about what you said.

~Roselover

Thanks everyone. Your care means so much to me. As so many others have said - it's nice to know I'm not alone. Most of your ideas I've tried, but a few are new and I thank you all for your suggestions.

I talked to my PCP last night - she doesn't have any idea - but she is going to try to contact Dr. Grubbs office since I saw him last Jan.

Anyone have experience with Adderall increasing BP? Actually, I think the Epogen injections are next, but I don't look forward to all that it involves.

Thanks for all your support!

~Roselover

I can't stand up more than 2-3 min. I get flushed, chest tightness and my BP drops - I measured it once at 78/66 and today at 86/73. I've been on Cymbalta for three weeks. I just am at a loss at what to do if anything. Anyone have advice? My doctor has no idea. Can't do florinef, midrodine, Provogil, Wellbutrin... Maybe I just have to wait it out, but I thought I'd check to see if there is something someone else has found helpful.

~Roselover

3:00pm sunday would work for me. (if I can get out of bed ) I think we're talking Providence Medical Center off of I-84, East of I-5. Were exactly will we meet? Starbucks? Hospital Cafeteria? What were you thinking Briarose? I'll get it on my calendar and really hope I'm feeling a little better by then. Right now, I can't stand up for more than 2 min .

~Roselover

Oh- and I'll be bringing my hubby - anyone else bringing a significant other? I think he'll find it educational to hear us all talk and share! Plus, I need a driver.

~Roselover

Linda, you have been on my heart and mind. In fact, last night I dreamt about Dr. Faoud and I've never met her! I think it is just because I've been thinking about you and asking many of the same questions you are asking and I want some answers - so I dreamt some up! No - not really answers - just dreamt I was getting some!

You are not alone. I'm going to send you a PM if you want to call me.

Sending you a big hug,

Melanie

I would really like to come. Providence Medical center is a good place for me to meet. On that weekend you mentioned, right now I think for me it would have to be before 2:00 on Saturday and after 3:00 on Sunday, but I probably wouldn't want much later than 6:00 on Sunday.

~Roselover

I got a medic alert bracelet because, like someelse said, it has an id # and phone number and they can find out my allergies, (I include adrenaline as an allergy), my meds and my specialists and their phone #'s. Mine says Orthostatic Intolerance, Postural Tachycardia, takes steroids (for the florinef). I figure those two terms are close enough to explain POTS. I were it whenever I am out of the house - I ususally have someone home with me that if I needed emergency care - they'd know what to say. But if I had a car accident or passed out somewhere, I would want the hospital to know who to call and what I am allergic to and what meds I am on.

You might look over at the Chit Chat forum. There is a post on making your own beaded bracelet. I have something like eight or nine different bracelets I wear and it just looks like jewlery.

~Roselover

Linda,

You're not in the Potshole alone - wish we could have a cup of tea together. I am really down physically right now too - though not in the hosptial like you - I'm so sorry it's been so bad.

Morgan - me too! Feel horrible except when I'm sleeping, but even worse when I awaken and sleep is disrupted. Ugh... is it really the time of year?

I think we can just all relate to the ups and downs

Glad I checked today so I could send you my love Linda!

Hugs, Roselover