Nicole is doing better - trying beta blocker again

[Nicole's Mom]

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

[opus88]

I only take the beta-blocker on a need basis, which is actually fairly rare. If I start to become bothered by the rushing adrenaline, I will take one dose - 10mg propranolol - and it does the trick. For me, being on a beta-blocker regularly created such fatigue that it wasn't worth it. (My BP is always low, so that is likely part of the problem.) Perhaps Nicole could try taking hers only when she feels adrenally. Just a thought . . .

Very glad she is making some progress - what a relief! I hope that continues!

[Nicole's Mom]

Thanks opus88 for your suggestion re: using the beta blocker for an as needed basis. The thing is Nicole was wondering if the beta blocker could paradoxically be causing the adrenaline since the adrenaline has abated and now is suddenly back upon using the beta blocker. Like for instance- I am sensitive to meds myself and have wierd reactions sometimes the opposite that it would be intended for- like xanax could make me wired instead of tired. So when Nicole started up again with the adrenaline- the only thing new she added is the beta blocker.

Thanks,

Bev

[yogini]

Beverly,

I am so glad Nicole is doing a little better. I thought beta blockers were supposed to slow you down and make you sleepy, but I guess anything is possible! I also wanted to add that I had horrible side effects for the first week of taking a BB, but I hung in there and then they went away.

For some BBs, once you start taking them, it can be dangerous to stop abruptly. So I would check with the doctor about taking it intermittently if that's what Nicole decides to do.

-Rita

[MomtoGiuliana]

Hi Beverly

What kind of beta blocker is she taking? I don't know if I am explaining this correctly, but my understanding about pindolol, the beta blocker I take in small amounts, is that while it blocks catecholomines, it also stimulates beta-receptors. My endocrinologist suggested that pindolol could be augmenting tremors I was having for this reason.

Here is the only quote I can find on this: "Some beta-blockers, such as pindolol and acebutolol, also have beta-agonist properties. While their agonist property is weaker than that of catecholamines, they are capable of stimulating beta-receptors, especially when catecholamine levels are low. These agents are said to have intrinsic sympathomimetic activity; this agonist property is protective in overdoses. " http://www.emedicine.com/emerg/topic59.htm

It also takes awhile to adjust to a beta blocker. She may need to try it for a week or more and then evaluate. Is she checking bp and heart rate a couple times a day while on it? I think that is helpful too. You can bring that data along with a description of symptoms to the prescribing doctor so that he or she can help you evaluate its efficacy/effects and whether the dosage or the type of beta blocker should be changed.

The only other thought I have is that I think it may be important to try to take a consistent dosage for a week or more instead of stopping and starting (it was hard to tell from your post, but it sounds like she may be taking it some days and not other days and at different amounts) if you want to evaluate how helpful it is. But, I also know (and opus also mentioned) that many POTS patients use beta-blockers on an as-needed basis. As Rita said though, beta blocker usage is ideally done under the supervision of a doctor. While generally considered a very safe drug, abrupt stopping can cause dangerous side-effects in some people.

Take care--both of you,

Katherine

[violahen]

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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[Nicole's Mom]

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

[MomtoGiuliana]

Hi again Beverly

The only comment I have is that if she has only been taking it for 5 days then it could take a while longer for side effects to subside. I also had uncomfortable side effects with the beta blocker when I started--mostly depression in my case. This lifted after maybe three weeks. That's one of the many frustrating aspects of this condition--having to wait and see and manage with uncomfortable side effects, until you find a treatment that is helpful. I think it is even harder to sort out what is a side effect and what is POTS, too, when you are already very symptomatic with POTS. Beta blockers are very helpful for POTS if your blood pressure is not low. Many of us have found a great deal of relief with this medication. For that reason, it makes sense for Nicole to stick to a trial run and see if it will start to help. You might consider consulting with the prescribing doctor regarding what length of time to continue a trial run, if you haven't!

Take good care. Hope Nicole continues to see improvement.

Katherine

[violahen]

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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[Nicole's Mom]

Thanks again, Katherine. It is so true that it is difficult to figure out what is from POTS and what is from side effects from a drug. Thanks for letting us know that it took 3 weeks for the side effects to wear away. I'm sorry for you that you had to endure that depresssion but I am appreciative to know for Nicole's sake that it could be 3 weeks so at least we can have some sort of barometer to follow. Like we can say that the side effect can last anywhere from one week to three weeks for instance.

Bev

[Nicole's Mom]

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

[geneva]

Hi Beverly. First I want to say how happy I am to hear that Nicole is making small incremental improvements. Appreciating the small things in life really takes on new meaning when you are hit with something like POTS.

I don't know the answer to your question about beta blockers specifically but can share my experience. 4 years ago in the hospital when I was dx with POTS I was put on Atenolol and Florinef at the same time and for 6 weeks I sank further and further into the worst potshole. Doctors said keet waiting for your body to adjust. I was SO wired all day and all night but because I was started on 2 meds, no one new if it was the meds (wich one) or the illness. Over a long period of time the meds were reduced until I was only taking 1/8 pill of each. When I stopped the beta blocker last fall I was amazed at how much my body relaxed. I can only think that for me some of the adrenaline rushes were coming from the beta blocker so I do believe it is possible. (after dropping Florinef 4 months later I felt even less adrenaline rushes).

I agree that it is SO hard to tell what are side effects that will go away or when something is just not good for your health. I hope that Nicole can tell soon what is the case for her. Good luck to you too with your new med.

[laila]

Atenolol made my heart slow down but gave me insomnia and made me nervous physically. I am on xanax for GAD and panic and the beta blocker took away the calming effect. I also have asthma so I stopped the Beta Blocker. I was put on Xanax XR and my palpitations, etc. are so much better. I fianally found a Doc to properly treat the anxiety, or is it the Pots? They don't know yet. Good luck! PS Iwas having insomnia anyway so it could be that the beta blocker just made it worse. I am also very sensative to meds, but find that xanax is the most helpful at this point. Who cares if i have to be on it forever. I was in a contant state of anxiety for 5 years!!!

[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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[Nicole's Mom]

Geneva,

Thank you for your response and all the details of your experience with the beta blocker. It helps to know what others have experienced so you can assess better what might be taking place or not- even though everyone is different. It really makes a huge difference to get others' perspectives. I'm sorry you had such a hard time being wired like that not only from the beta blocker but from the Florinef as well. This sure speaks to the power of drugs and individual sensitivies. Yesterday, Nicole took her crumb again and within 1/2 hour was feeling drugged - like drunk which is what she had said once before. Prior to that she was feeling adrenaline--y which is what made me write the topic. Now today after a night of sleep (will have to see what "kind" of sleep she had)- we'll see what today will bring. She has had all sorts of experiences since starting this drug. Hopefully they are side effects and will wear off after a couple of weeks.

laila, thank you for your imput as well. It seems as if you too had your nervous system revved up from the beta blocker. You are also sensitive to drugs. I'm glad that you found something to take away that 5 year period of anxiety. Meanwhile your imput about your experience on the beta blocker is very useful.

violahen,

Thanks again- this time for answering my question so thoroughly. It is certainly tempting to consider going to Dr. Grubb. So many on this forum have said such great things about him. There is so much about orchestrating such a far-away trip-for someone like Nicole- her individual situation- there are so many obstacles and factors to consider. Hurdles. One is that travel alone can send Nicole spiralling backwards- so we need to wait until she is sturdier. Hotels have to be scent free- no carpet cleaning- no perfume (dryer sheet smell/ detergent fragrances) on sheets. She would need to be supine the whole time- even if she was in a sturdier state. Being upright for a length of time even while healthier can be problematic. During the (Sept 15) last doctor's (new doc one hour away) visit to get answers is what sent her from one relapse (which she was climbing out of) into this horrible relapse within a relapse. (Her relapses aren't just for a few days but for MONTHS and they aren't mild- she becomes entirely bedridden with lots of problems). Because of her fragility she woud have to be way sturdier than she is now and sturdier than she was on Sept. 15 because of the reasons I just listed which means setting it up (appt for Dr. Grubb) for into next year.

But from what everyone who has seen him has said- it seems like Dr. Grubb is totally on top of this illness while being compassionate. Nicole is very scared of going even further backwards and I can't blame her. Man oh man- it's not easy. Even though Nicole is slowly but surely moving forward- this past 3 months has been some test of endurance - especially for Nicole. And this is from going one hour away to a doctor who is very smart and came highly recommened to us because he looks for all sorts of pathogens and loads of other things.

Also there is a doctor (POTS specialist in Boston) who knows Nicole and wants to do more testing on her. He has his own autonomic lab. He is very smart. It makes sense that he would be the one we'd go back to first. But I can at least call Dr. Grubbs office and explain our situation and see if they have other scent sensitive, easily relapsing patients who need to be supine, etc, etc, and see what they suggest.

So right now (I'm just thinking out loud. . .sorry. . . we still have the new, local doc who came to the house and we are waiting for the results of his tests and his recommendations and he may test futher. We have (sept. 15) doctor one hour away who has ordered his own tests a zilllion - many, many different kinds of tests and we are about to set up at home blood draws for that. We have the Boston POTS doc waiting in the wings to do more testing (autonomic) on Nicole and the chance that Dr. Grubb (I am calling today) could help Nicole if we could orchestrate such at trip.

Okay- I 've taken up so much space - thank you for your imput- everyone -and thanks for always being there- everyone- this has been so hard- and you've all been so great with advice and concern. I am so grateful.

Thanks again so much for all of your imput.

Beverly

[violahen]

Hi Beverly:

First, I want to commend you for being such a wonderful mom! Your committment and love for your daughter surely shines through! I am sure she needs that the most right now. I was born with POTS and my parents were too scared to ever have me seen by a doctor. I suffered through a terrifying childhood thinking I might die at any moment with no support from my parents. They attributed all of my symptoms to me being a "nervous" "hysterical" child. I was not diagnosed with a physical problem until I was 20 and out of the house! To this day they cannot accept that I have this illness.

In any case, I have two suggestions if you are considering making the trip to Dr. Grubb. First, he is very booked up for appts. First because all of the worst cases come from all over the country to see him...second because he had emergency back surgery recently and has missed quite a bit of work. He has a lot of appts. to make up. Normally his appts. can only be made about 6 months in advance.

HOWEVER, when I first got in touch with him I wrote him a letter outlining who I was and the details of my situation. At that time I expressed an interest in meeting him. You could either write to him or e-mail him. It may take a bit of time to get a response because of his backed-up workload, but he WILL respond. Also, be warned that his office staff is not always the most helpful. Be persistent.

Let me know if you would like an address and/or e-mail address.

Keep up the good work!

Kristen

Geneva,

Thank you for your response and all the details of your experience with the beta blocker.  It helps to know what others have experienced so you can assess better what might be taking place or not- even though everyone is different.  It really makes a huge difference to get others' perspectives.  I'm sorry you had such a hard time being wired like that not only from the beta blocker but from the Florinef as well.  This sure speaks to the power of drugs and individual sensitivies. Yesterday, Nicole took her crumb again and within 1/2 hour was feeling drugged - like drunk which is what she had said once before.  Prior to that she was feeling adrenaline--y which is what made me write the topic.  Now today after a night of sleep (will have to see what "kind" of sleep she had)- we'll see what today will bring.  She has had all sorts of experiences since starting this drug.  Hopefully they are side effects and will wear off after a couple of weeks. 

laila, thank you for your imput as well.  It seems as if you too had your nervous system revved up from the beta blocker.  You are also sensitive to drugs.  I'm glad that you found something to take away that 5 year period of anxiety.  Meanwhile your imput about your experience on the beta blocker is very useful.

violahen,

Thanks again- this time for answering my question so thoroughly.  It is certainly tempting to consider going to Dr. Grubb.  So many on this forum have said such great things about him.    There is so much about orchestrating such a far-away trip-for someone like Nicole- her individual situation- there are so many obstacles and factors to consider.  Hurdles.  One is that travel alone can send Nicole spiralling backwards- so we need to wait until she is sturdier.  Hotels have to be scent free- no carpet cleaning- no perfume (dryer sheet smell/ detergent fragrances) on sheets.  She would need to be supine the whole time- even if she was in a sturdier state.  Being upright for a length of time even while healthier can be problematic.  During the (Sept 15) last doctor's (new doc one hour away) visit to get answers is what sent her from one relapse (which she was climbing out of) into this horrible relapse within a relapse.  (Her relapses aren't just for a few days but for MONTHS and they aren't mild- she becomes entirely bedridden with lots of problems).  Because of her fragility she woud have to be way sturdier than she is now and sturdier than she was on Sept. 15 because of the reasons I just listed which means setting it up (appt for Dr. Grubb) for into next year. 

But from what everyone who has seen him has said- it seems like Dr. Grubb is totally on top of this illness while being compassionate.  Nicole is very scared of going even further backwards and I can't blame her.  Man oh man- it's not easy.  Even though Nicole is slowly but surely moving forward- this past 3 months has been some test of endurance - especially for Nicole.  And this is from going one hour away to a doctor who is very smart and came highly recommened to us because he looks for all sorts of pathogens and loads of other things. 

Also there is a doctor (POTS specialist in Boston) who knows Nicole and wants to do more testing on her.  He has his own autonomic lab.  He is very smart.  It makes sense that he would be the one we'd go back to first.  But I can at least call Dr. Grubbs office and explain our situation and see if they have other scent sensitive, easily relapsing patients who need to be supine, etc, etc, and see what they suggest. 

So right now (I'm just thinking out loud. .  .sorry.  . . we still have the new, local doc who came to the house and we are waiting for the results of his tests and his recommendations and he may test futher.  We have (sept. 15) doctor one hour away who has ordered his own tests a zilllion - many, many different kinds of tests and we are about to set up at home blood draws for that.  We have the Boston POTS doc waiting in the wings to do more testing (autonomic) on Nicole and the chance that Dr. Grubb (I am calling today) could help Nicole if we could orchestrate such at trip. 

Okay- I 've taken up so much space - thank you for your imput- everyone -and thanks for always being there- everyone- this has been so hard- and you've all been so great with advice and concern.  I am so grateful.

Thanks again so much for all of your imput.

Beverly

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[calypso]

Hi Nicole's mom,

I just wanted to share that I take 50 mg daily of Toprol XL (an extended release beta blocker). This is an average starting dose and is higher than Nicole's. It does NOTHING to stop my adrenaline-y feeling. I don't know if these feelings are just so strong that my dose can't stop them or what. When I stopped the beta blocker I felt about the same in terms of these feelings, so I don't know what to make of it.

Don't know if that helps, but it's my experience. I take Klonopin when I need it to ease the anxiety-type feelings.

Amy

[Nicole's Mom]

violahen,

I want to thank you for the heads-up on Dr. Grubb and his busy schedule. I knew from this forum that he had surgery and suspected he might be backlogged but it is good to be extra-reminded of this. Also - I am so sorry for your experiences with this illness in that you had to go it alone and that your parents chucked it all up to you being just a nervous, hysterical child. That must have been extremely difficult for you. My heart goes so out to you. It sounds like it is still difficult where they are concerned that they still can't operate properly. I hope this doesn't bring you too much stress- the relationship they have with you. If so I hope you are finding help maybe with a therapist to work through that part of your situation. I think you must have a very good sense of self and a strong self-esteem for you to have stuck to your guns and embraced your own beliefs to search for answers for yourself in spite of your parents attitude. I have to commend you for this.

Calypso,

I want to thank you for shedding light yet on another angle on a totally different experience of using a beta blocker and then stopping it yet still having the adrenaline-y feeling. It's so hard to know what to make of so many things, isn't it? It seems to really boil down to this illness affecting everyone so differently and the drugs as well. Still- it is important to understand the experiences of everyone. So again thank you for sharing with me- your experience.

Beverly