If Beta Blockers Don'T Work, What Does?

[Aquadiva]

I am looking for other people's experiences or knowledge with beta blockers. I am wondering if maybe we need to ditch the beta blockers all together and try something else? But what? Daughter hasn't tried florinef or midodrine. Fatigue, dizziness and brain fog are the main issues. Any thoughts/experiences?

[Lenna]

Hi, I'm wondering why your daughter hasn't tried Florinef or Midodrine? They didn't work for my son, but those meds do help a lot of people and are usually the first meds a doctor will try.

[Christy_D]

My son takes fludrocortisone and now he is only occassionally dizzy. His fatigue and brain fog have been much better lately also, but I'm not sure if the fludrocortisone or his doxepin is responsible. But fludrocortisone definitely gives him relief from being dizzy.

[Aquadiva]

Hi, I'm wondering why your daughter hasn't tried Florinef or Midodrine? They didn't work for my son, but those meds do help a lot of people and are usually the first meds a doctor will try.

That is the million dollar question. She is on her 4th dr. for this if you count her pediatrician who basically wouldn't do anything. That is what the current dr. also said about being the first meds, but he switched her from metoprolol to propanolol first (and added fluoxetine and bcp). She was on propanolol 2 years ago and felt worse, but it wasn't the extended release, and I guess propanolol has a better history of improving symptoms?

[Aquadiva]

My son takes fludrocortisone and now he is only occassionally dizzy. His fatigue and brain fog have been much better lately also, but I'm not sure if the fludrocortisone or his doxepin is responsible. But fludrocortisone definitely gives him relief from being dizzy.

Did he also try the extra fluid and salt before starting fludrocortisone? My daughter has been doing that continuously, and wonder if the fludro will still help? I'm not familiar with doxepin.

[Christy_D]

My son takes fludrocortisone and now he is only occassionally dizzy. His fatigue and brain fog have been much better lately also, but I'm not sure if the fludrocortisone or his doxepin is responsible. But fludrocortisone definitely gives him relief from being dizzy.

Did he also try the extra fluid and salt before starting fludrocortisone? My daughter has been doing that continuously, and wonder if the fludro will still help? I'm not familiar with doxepin.

When he was first diagnosed, not by a POTS specialist, the doctor gave us fludrocortisone for the dizziness and gave us no other instructions. Well, the dizziness was much better, but he still had a bunch of other symptoms that weren't being addressed. So we saught out a specialist and that's when we were given other instructions, like water, salt, plus other medications like doxepin. Once he started the doxepin, other symptoms started getting less severe(his hot spells went away, his 'licorice' legs went away and heavy head).

They upped his dosage of doxepin and this helped with his insomnia, fatigue, and brain fog. He is now only sick in the a.m. hours. He goes to school at 10 am and the nausea is usually gone by noon. He has made great progress.

[sue1234]

What exactly does Doxepin do in the body? I am curious that it got rid of his hot spells--that is an AWFUL symptom for me, having to live in a/c continuously for half a year.

How come we don't hear more about Doxepin? Is it something just being offered to younger people?

[Christy_D]

What exactly does Doxepin do in the body? I am curious that it got rid of his hot spells--that is an AWFUL symptom for me, having to live in a/c continuously for half a year.

How come we don't hear more about Doxepin? Is it something just being offered to younger people?

I've noticed not many people mention being on Doxepin. It is the first medication my son's POTS specialist put him on(he was already on fludrocortisone), and have had success with it. I think the doctor chose it because it has a sedative in it (or effect of a sedative) for my son's sleep issues as well. Plan B, if Doxepin didn't help, was going to be Cymbalta. I'm not well versed as to what's in it that makes it effective, but for us it has been.

Mack's Mom pointed out to me that Doxepin is listed as a drug used for Mast Cell disorders as well. We've had to increase the dose 2 times to get it to be the most effective. He started out on 40 mg and is now taking 150 mg. Since starting the 150 mg, he has returned to school and his insomnia is gone(knock on wood).

[comfortzone]

Doxepin has been known to be an effective sleep aide for insomnia -- but in teeny tiny doses. Not the normal dose for anxiety or depression or the other things it's prescribed for -- but just a wee bit -- like 10mg at bedtime for an adult. It is a tricyclic antidepressant - an older drug - another one of those meds you need to slowly taper off of in many cases if you've been on it awhile. Overdoses can be very lethal & there are drugs you cannot combine with it such as MAO inhibitors. A few years back was given it to try for insomnia but it didn't work for me so I stopped it after a week or so....

[cnm1]

Aquadiva

This is a common problem. Many docs (even so called dysautonmia specialists) don't know the drugs. It is the reason we go to Grubb. It seems that alot of people do not do well with the beta blockers. For my daughter, the order was florinef and wellbutrin xl,midodrine, mestinon. I do not understand why these docs have not read the research out there.

I was able to get someone local to start the florinef (she knew Grubb and thought highly of him). Of course, she 1st wanted to know if we would like to wait and she how she did on her own. At that point she had been homebound about 2 1/2 yrs and used a wheelchair alot. Uh - no

Louise

[Aquadiva]

Aquadiva

This is a common problem. Many docs (even so called dysautonmia specialists) don't know the drugs. It is the reason we go to Grubb. It seems that alot of people do not do well with the beta blockers. For my daughter, the order was florinef and wellbutrin xl,midodrine, mestinon. I do not understand why these docs have not read the research out there.

I was able to get someone local to start the florinef (she knew Grubb and thought highly of him). Of course, she 1st wanted to know if we would like to wait and she how she did on her own. At that point she had been homebound about 2 1/2 yrs and used a wheelchair alot. Uh - no

Louise

Your poor daughter! How is she doing now?

Well, we saw her new primary care doc and we were VERY happy with him. He is definitely more willing to try different drugs and different combo's. Got more from him than all other visits combined with specialists! He thought maybe Inderal would be worth a try, but I told my daughter not to take it last night. She didn't and said she felt better today. I SURE hope that this could be one of the keys. I hate to think that all this time the drugs have been making her worse, but will be happy to have an improvement. I feel like the specialist diagnosed her (which had already been done 2 years ago) and then thought his job was over! I am SO much happier with this new doctor already!! He is willing to look at the research and would even work with a doctor out east that I talked to on the phone.

My daughter is still waiting to see Dr. Grubb, and even though we are very happy with how things seem to be heading, I think we will still go regardless. Have been waiting since April already and were told it would probably be another couple months.

I think Florinef would be worth a try, but daughter doesn't want to blow up like a balloon. She is going to try adding Ritalin back in now that she isn't taking the bb and see if that gives her any added relief (didn't notice any difference before). She tried Mestinon and it made her nauseated without any benefit. Midodrine is another one that I am interested in along with EPO. She goes back in a week and a half, so we will discuss more with her doc.