Please send prayer and hopes

[Nicole's Mom]

If you all would be kind enough to send some positive vibes Nicole's way maybe it will help in a couple of ways.

First of all Nicole has summoned up the courage to try Toprol thanks to what some of you had said in responses to a past question I posted. She has always been very, very cautious about trying drugs and the fact that she is actually trying one is a big step toward the effort to "manage" this illness. Nicole is desperate to gain some ground.

Three days ago she took a "crumb" of the Toprol- and I mean a crumb- like 1/15th of a 25mg. pill. She thought she felt "irritability" but she passed it off to her constant array of symptoms that come and go as she had taken such a tiny dose. Yesterday - she was ready to try again and took 1/6 of the pill or @ 4mg. In short order she was feeling irritability again but more intensely. Plus funny feelings in her arms and legs. I called the pharmacist and she said she had heard of this irritability and it should pass as her body adjusts over the next week or two. Plus I read that one of the side affects was the inability to sleep which kind of went hand in hand with the feeling she was experiencing.

Anyway yesterday Nicole said she would really try to stay the course and get past this side effect and once it subsided she would try to raise the dose as needed to gain benefit. The instructions did say to eat with food or after a meal- which I realized this after she took it. She took it 3 hours after lunch. So today I am going over to get her lunch ready and the plan is for her to take it on the heels of lunch. I am kind hoping that she will indeed try the drug again even though she knows a side effect will occur.

Although there is no promise that this drug will achieve positve results still I am hoping that Nicole will gain something positive from it and that Nicole will be able to stay the course to find out if it has a positive result. When she stands up she feels horrible and her heart races terribly and then when she lies back down again it takes a while for her heart to calm down. Also her heart rate in the supine position has been higher lately and as I've mentioned before her supine bp is higher from the licorice and the salt, etc. Plus if this drug could block the adrenaline effects she experiences this of course will help as well.

Not only am I hoping and praying that Nicole will stay the course and wait until this side effect passes I am also hoping and praying that no other side effects kicks in.

Also I was wondering - when do you take your beta blocker- those of you who take it? Her prescription is for 2x per day. I am concerned about the sleeping problem if she takes it too late in the day. Do you take it in the a.m.? Once a day? 2x per day. How do you divide it up if it's 2x per day? Did you have initial side effects and did they pass?

Anyway if you could send her wishes that she gives this Toprol a good try and have positive thoughts that it works for her - and that it helps her gain ground- I would be very grateful.

Thank you,

Beverly

P.S. Nicole rarely calls this early in the a.m. and just as I was finishing up this post- she called- just seconds ago. She is extremely nauseous and feels like she might throw up and asked me to come right over which she never, never does. She called her local doctor and she is being put on IV saline again. Now we could really use your prayers. I thought she was starting to come along and that today she would eat her lunch and try the Toprol again. It was like symbolic- of her moving along toward better things. Now I don't know what is going on. Why is she so sick feeling? Could it be the effects of yesterday's Toprol? Or what??? This is really tough.

[goldicedance]

We'll keep Nicole in our prayers. Perhaps she needs to change beta blockers. There are a whole slew of those out there so if one doesn't work, there are others.

I was just discharged from the hospital after spending 5 days on IV fluids. Once you get dehydrated, your whole body is off. I did try a new medication recommended by Mayo - mestinon. So far it has worked miracles--it has gotten me on my feet again. I was really down when I went to the hospital on Friday.

Just curious - what medications has Nicole tried? Clonidine? Midodrine? Flurinef? Mestinon? Neurontin? Zoloft (or other anti-depressant in that class)? It takes a lot of time to get the right medication or the combination of medications. Sometimes they work, sometimes they don't, and sometimes they stop working.

I have had POTS since 1994 and believe me it has been a road filled with turns and dead ends.

Is Nicole seeing a POTS specialist? Have you considered asking her doctor for a referral to the Mayo Clinic? She is so young to be suffering like this.

Let us know how she is feeling.

[geneva]

Beverly, I am sorry to hear that Nicole is having a hard time with the new med but applaud her for trying. Doctors have a very hard time comprehending how a crumb of a pill can have a negative reaction which just goes to reinforce how little is know about dysautonomia.

I was on atenolol twice a day in the beginning but later found that it was better for me to eliminate the evening med because by morning my am BP was so low my monitor couldn't even read it....and the low bp and high heart rate went hand in hand. After 3 years on a beta blocker I eliminated the am dose as well because I could not keep my bp from dropping. So in answer to your question about when to take, it is hard to say what will work best for Nicole since our systems are all so different. Unfortunately, experimenting is the only way to know.

I wish there was something I could say to help both of you...my heart goes out to you and most especially to Nicole. I can tell from your PS that Nicole reaching out this morning has you on alert and I will pray for her that she can weather this upset as she has done all the others. I know that IVs can really work wonders in restoring us to baseline and I hope this will be the case for Nicole.

Please keep us posted.

[yogini]

Beverly,

I am SO glad Nicole is trying the beta blocker, because it may help with her high HR and BP. (I have had a few episodes of high BP over the past month, and it is miserable. I can see why Nicole is tired all the time, because the fatigue I have felt is unbearable.)

I was initially given a beta blocker (lopressor) after my first tilt table test, but I stopped it after a couple of days due to the side effects. A month later I was rushed to the ER with tachycardia, and was prescribed another beta blocker, atenolol. I felt horrible for the first week/10 days that I tried the atenolol. My legs felt like lead, I had a headache and nausea. But I hung in there and it went away. This has been a lifesaver for me, because my HR is otherwise out of control. Many of my friends and relatives have tried beta blockers, and they all had a rough time at first. I know how hard it is when you're already feeling terrible to add something new to the mix. I really hope Nicole is able to stick with it and wait it out. I'll keep my fingers crossed for her.

By the way, I take a 1/2 pill in the am and 1 pill at night. My doctor told me to take the larger dose at night, because the side effects will happen when I'm asleep (if I can sleep, that is!)

Best wishes,

Rita

[Michelle Sawicki]

Beverly, I will definitely keep Nicole in my thoughts and prayers. I've been on a beta blocker for years. When I started taking the beta blocker it made me a little depressed...a sappy song on the radio would make me cry...and then I'd laugh over the rediculousness that I was crying...that was totally not me. Luckily I adjusted quickly and the beta blocker has really been a life saver for me ever since. Still, some people can't tolerate them. I hope Nicole does find it helps.

Michelle

[morgan617]

i keep everyone on this site in my prayers as we all could use them. it's so hard to see your kids sick. i have a chronically ill son and it is awful to see them suffer. i hope she rebounds and gets better soon! morgan

[corina]

Bevely,

just want you to know I'm thinking about Nicole and you and hope she's doing a little better. I'm gals she's trying a beta blocker which like michelle. is me lifesaver. I'm on metoprolol, which seems to work for the best for me and on a very high dose. I tried to lowe but can't do anything without it, just be in bed. Would you please say hi to Nicole and wish her all the best?

Corina

PS this must be very hard far you as well, so I'm thinking of you also.

[opus88]

I must take a beta blocker (propranolol 10 mg) before I perform in order to continue that part of my life, but if I have to take 2 in one day, I can become a zombie. Thankfully that is the only prescription I have to take.

I hope all of this turns around very soon and that you and Nicole will finally see some progress. Sending many positive wishes and prayers . . .

[blackwolf]

I am currently on one, 50 mg, Toprol XL a day, which I take in the am. Though I have taken an extra 25mgs a nite before I was put on the Norpace again, I have stopped that now. I really hope Nicole is feeling better quickly.

Here come the good vibes

========

Blackwolf

[Nicole's Mom]

Thanks all for your kind words. I am home now after spending a good part of the day with Nicole. It feels so good to know that you are all there and so understanding - how difficult this is and offering advice and support and much more. I just telephoned Nicole and told her about all your responses and how many of you couldn't live without your beta blocker and that even fatigue could be lifted by it. I told her as I always do about your wishes and hopes and prayers for her. She is grateful for all that you pass on to her.

Earlier today when I was at Nicole's apartment she expressed some hesitancy about continuing the Toprol. We decided to skip today because of what happened to her this a.m. But just a few minutes ago when called her and I told her about your responses and how beta blockers helped you and that it could help her she agreed to try it again tomorrow barring any episodes. I pray she does try it again. To answer your question far she has tried Florinef and she takes 50mgs of Zoloft. Presently we are trying to set up a phone consult with her POTS neuro specialist which according to his secretary he might consider having with us. Now that Nicole is in the mindset of trying something pharmaceutical to get her out of this mess the phone consult might be very beneficial. I pray it all comes together.

About the p.s. This morning Nicole felt alarmed because she was experiencing such nausea more than she normally feels and she was teetering on vomiting. Plus she was having a stomach ache. So she called her local doctor and said she was afraid that she was about to lose fluids which didn't end up happening thankfully. He had ordered only one day of IV saline which Nicole "postponed" when the nausea lifted in case she needed it another time. When I got to Nicole her male friend/ roomate who had long gone to work had made her peppermint tea which was helping a little. Then I made her ginger tea. Over the next three hours the nausea lifted and she was able to eat some lunch much to my relief. Now we will see what tomorrow brings. Please keep good thoughts that it is better. I will keep you posted on the beta blocker.

Thank you all again.

Best Wishes,

Beverly

[MomtoGiuliana]

Beverly

It sounds as if you are continuing to weather the ups and downs and twists and unexpected turns of managing POTS. Because our symptoms can be fairly variable from day to day, it makes it even more challenging to determine whether new symptoms are related to starting a new drug, or not. Hope Nicole's nausea and stomach pains settle. That is miserable.

I am glad to hear that Nicole is trying a beta blocker, as it may really help her. Thankfully there are many different beta blockers. If this one doesn't work well, maybe another one will. Most of us seem to do best with pretty tiny dosages. In my case, I think it definitely caused some depression for me as a side-effect at first, but that was only in the first few weeks.

Take care,

Katherine