violahen

Hi Beverly:

Dr. Grubb has a great facility and can do whatever tests might be needed. He is also an excellent listener and does prescribe based on what I tell him I am experiencing.

When I first met him I brought my entire chart which is bigger than the phone book(!). He looked over the entire thing. He also spent several HOURS talking to me and gathering info about me. I have also had tests run at the Medical College of Ohio where he is based.

I can't say enough good things about him. He is an incredible doctor and an incredible human being...so caring and compassionate. ALSO, he is very dedicated to disautonomia research and always knows about the most up-to date data and info. Many of the medical reports written about POTS/disautonomia are written by him.

Best wishes!

Kristen

violahen,

Thank you for your response.  What a great idea to check into how long the drug stays in the body.  Yikes!  It sounds like that adrenaline-rush was a really big problem for you that did not go away.  Plus the beta blocker slowed things down too much.  Thanks for the advice about Dr. Grubb.

By the way, does Dr. Grubb run tests?  Does he have his own dysautonomia lab?  I've always meant to ask this or do you bring your info of tests that have already been done and then he takes action based on this?  Also does he ever assess what you need- treatment based on what you tell him- like what symptoms you experience?  Or is it all of the above?

Thanks again,

Beverly

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Hi Beverly:

I had taken beta-blockers on a consistent basis for a period of many months. During this time I would experience the "rebound" effect...it would help to slow things down at times, but other times I literally felt like my body was saying "no" to it and fighting it by sending me into hugh adrenaline rushes. After discontinuing a regular schedule of beta-blockers I began taking it "as needed". In other words, if I was having an adrenaline "attack", I would take it. Usually within 30-45 minutes it would slow things down. The only problem was that I would then slow down too much. I no longer take any beta-blockers. They just don't work for me.

(By the way, I also tried Toprol. It did not help me....this was several years ago.)

Another thing to consider is the amount of time the drug is in her system at a given moment. It depends on the beta blocker, but some stay in the system for a very short time. For example, inderal stays in the system for only a few hours. At that point it would still be likely to have adrenaline rush problems.

Considering how sick your daughter seems, I wonder if you are getting the best care possible. The only reason I ask is because for years my docs in San Francisco told me I should go to Toledo to see Dr. Blair Grubb...I was too scared to hear what he would tell me. However, two years ago I moved to Ohio and felt I had no excuse but to see him...He has been an absolute godsend for me. He is not only brilliant and knowledgeable about all of this stuff, but he is also so tuned into every aspect of living with this type of illness. Next to my husband, he is my BIGGEST source of support and hope.

Good luck!

Kristen

(violahen)

before it beta-bloc

Thank you all for your replies.  Nicole has taken the beta blocker for 5 days and it has only been on a smidge of a crumb.  She is so sensitive as many as you are to drugs.  It's how she started on Zoloft with the smidge of a crumb routine and slowly titrated up- eventually making her way to 50 mgs.  She is taking Toprol.  And has taken it consistently for 5 days in a row, starting last Friday.  (If I wasn't so sensitive myself to drugs I wouldn't believe that Nicole could be so affected by such a tiny dose.  But I too am trying to take something new myself and I too am experiencing weird, side effects and I am taking 1/8 of the lowest dose available of this drug.  So it's lucky for Nicole that I, her mother, "react" to tiny doses of drugs or I might not suspect that her reaction could be from a drug at all.  She was doing fairly consistently "well" before the Toprol.  Even I have been told to try and get past the side effects of my drug by staying on it).

Rita, There were three times out of 5 when Nicole felt really crummy from the Toprol.  The first time was either Saturday of Sunday morning and I read to her your comments from a long ways back(I copied down the comments from that post) when you said how horrible you felt for about 10 days and some of your friends and family tried beta blockers and had a hard time with side effects and you advised Nicole to hang in there.  What you said about yourself- the symptoms you experienced was very close to how Nicole felt on that particular day (either Sat. or Sunday) the day I read your comments- you had said your legs felt like lead and Nicole said hers felt like lead plus other symptoms you experienced. 

The prior day Nicole felt weepy and I read her Michelle's reply (from a ways back) about how at first it made her weepy.  Reading what each of you experienced to her allowed Nicole to force herself to contiunue.  This morning she awoke with anxiety and adrenaline and sort of something a bit loose in the bathroom department.  She rarely has bathroom things.  But maybe anxiety could be the cause of that which was a symptom she had today and she hasn't had that in quite a while.

Katherine- thank you for you response and the link to the info. It's very helpful.  I was looking around for more info so when I am done adding this reply I will click your link.  One of the main reasons Nicole is taking it- is because she becomes adrenaline-y when she stands up for too long even though normally it has abated.  When she went to that doc's office on Sept. 15th and really overtaxed herself from the trip the first symptom of the cascade downhill was loads of that adrenaline feeling.  So that adrenaline- epinephrine/ norepinephrine response appears to be a culprit in her case as it is in many POTS patients.  The more I educated myself about how beta blockers can cut that business off - the more it seemed like she should be on one.  Without the beta blocker, it's almost like Nicole is walking a tightrope without a net.  I am not a doctor but just an observant mother watching Nicole over the years and listening and now reading literature and comments from all of you on the forum and it seems like Nicole is the perfect candidate for 3 reasons.  And the thing you said about tremors-Katherine, Nicole does have this to a small degree and I know you spoke about yours in a topic you had going.

violahen- thank you for your response. Interesting how you perceived what was happening to you as a rebound effect- and you experienced the adrenaline-rush thing.  I am curious.  Did you take the beta blocker consistantly or periodically- I am wondering to evaluate the rebound thing.  If you took it consistantly was it that your body was rebounding in between doses?  Also did you ever get past the reaction of rebound adrenaline-rush.  Was that at the beginning of taking it and something that finally abated?  Because it sounds like you stopped it because it slowed down everything too much- that is if I'm reading it right.

Thank you all again. 

Beverly

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Hi:

I used to take beta blockers many years ago for POTS. I finally gave up on it. I definitely slows things down....(for me it was too much so.) But I also found that my body would have sort of a "rebound" effect at times as well. It seemed to be fighting what the beta-blocker was trying to do and as a result my body would do the adrenaline-rush thing that you describe.

Don't give up though!

Wishing you all the best,

Kristen

Nicole has started back on the beta blocker- which is where my question will be.  She has still been coming along slowly but surely in her progress.  She has been able to engage some reading and writing in the afternoon instead of just one hour late at night.  She has been more active- in several ways although still needs to lay down.  Much is better - albeit in small ways- but steadily better. She has been feeling better and moving forward. 

Now, one of the big things is that the adrenaline-y feeling has mostly abated (except for when she stands too long).  So because the wired/ adrenaline thing is gone (when she is not standing)- she has been able to get some deep sleep- real, restorative sleep- for 10 hours a night. 

Recently- like 4 days ago she tried going back on the beta blocker so that when she stands up she won't have that adrenaline when upright, and so her heart won't race, and to bring down her bp and because it has helped so many of you feel better. 

But for the last two mornings the adrenaline is back and has interupted her lengthy, restorative sleep.  Like just now she told me she only got 5 hours of sleep last night.  She only takes a smidge of beta blocker.  Two nights ago she got 8 hours instead of 10- sleepwise and then last night -5 hours and last night was when she increased the bb by another smidge.

So the question is - do you think that the beta blocker can paradoxically have the opposite effect- like bring on adrenaline instead of reduce it?  Could wired-ness be a side effect??

Anyone experience this from a beta blocker?

Thanks so much,

Beverly

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Hi:

I am new to the forum, and LOVE it. What a great outlet! Thank you ALL for your participation.

I just wanted to let you all know of a product I have discovered that really seems to help me with hydration and electrolyte issues.

It is called Hydralyte. It is a Gatorade type product but without so much of the sugar and additives. It was designed specifically for people who need to replenish fluids and electrolytes FAST. It comes in a powder form. You just add water. I found it online...if you do a Google search for Hydralyte you'll find it. You could probably find it in some health food stores as well.

I have real issues with keeping fluids and electrolytes in check. My body doesn't seem to be able to regulate electrolytes at all anymore, so this stuff is a big help.

If you have similar issues, I REALLY recommend it.

Kristen

Hi:

These sound like typical POTS symptoms to me. I have had many of this type of episode...always at night in bed.

My body tends to be extremely sensitive to postural changes like lying down. I know lying down is supposed to be helpful, but my blood volume and BP tend to be so low that lying down is problematic. It just makes everything even slower/lower. Ther body's reaction is then to try to conteract it....that's where the racing heart comes in.

The disappearing veins sound like a drop in blood pressure. For this all I can suggest is super-hydrating yourself. Drink A LOT of fluids. OFTEN. This can help boost up the volume.

In terms of the postural stuff. I ALWAYS need to lie down with at least two pillows under my head. I actually can't lie down with anything under my head without fainting. I recently found out that the reason why is because my heart actually STOPS beating if I lie flat. This was documented in the hospital after I complained about the problem. You may have a similar type of problem. Again, the body's reaction to that type of thing is to freak out and an have the heart race out of control.

Good luck!

Kristen

I had another night of weird symptoms.

I get this sort of uncomfortable feeling in my upper stomach and find it hard to relax, then all my veins dissappear and my skin goes clammy, then my heart rate starts up and i feel like i cant get enough air. Then my vision goes weird and i feel dreadfully cold despite having a lower than normal body tempature (unlike a fever).

then my body trembles violently as if i am freezing for an hour or so and then it goes away - i cant sleep for the rest of the night well.

What is happening? Has anyone else had this kind of experience? Im worried.

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Hi:

I have been taking provigil for about a year. I definitely helps with fatigue. Over the last year I have had to bump up my dosage....I don't know if that means that my body is getting too used to it or if I'm just getting worse.

I can especially vouch for it's effectiveness based on a couple of times when I have had pharmacy screw ups and couldn't take it for a day. I was an absolute mess!! I could barely function. My fatigue was immense and my brain fog was completely debilitating.

I currently take provigil, cerefolin (for brain fog), MagOX 400 (for nervous system stimulation), and lexapro. The lexapro doesn't seem to do a thing. I feel the provigil is most beneficial for me.

However, I am still symptomatic. Dr. Grubb feels that I am definitely getting worse. (I've had POTS all my life. I am 38.) BUT, the provigil definitely helps my symptoms and quality of life.

Kristen

I was put on Provigil recently by my doctor to help with fatigue, which has been one of my most debilitating symptoms. I have been taking it for about five days now and I feel great; I have much more energy during the day and I don't need to nap as much. This drug, coupled with Proamatine, salt tablets, and tons of fluids, seems to be helping immensely. I would love to hear what others have to say about this drug and hear what your experiences with it have been. Thanks.

Hope you all are feeling well!

Best Wishes!

~Meghan

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Hi:

I've had POTS all my life. I am now 38. It's been quite a rollercoaster for me as I'm sure you can all understand. Over the past year or so my condition seems to be worsening. My doc is not sure why...perhaps pre-menopause?

In any case, I am currently taking lexapro, provigil, MagOx 400, and cerefolin. I'm still pretty sick and symptomatic.

I really feel that the lexapro isn't doing anything for me. I remember when I first started it over a year ago my doc asked if it was helping. My response was that I still had just as many symptoms as ever, but I didn't seem to "care" or worry about them as much...I felt more "blotto" and unemotional, but not without symptoms.

I have now decided that I would like to try to go off of the lexapro. My brain continues to become more and more foggy and unfocused and I wonder if the lexapro contributes to that. (The cerefolin is supposed to help that) I want to see how much of it is the lexapro and how much is just me.

Has anyone had any good or bad experience with the lexapro tapering process ?

Thanks.

Kristen