Really scary day

[Guest guest]

I used my nebulizer today around 12 noon and immediately got totally

shaking and trembling and nauseous and litterally couldn't hold a

cup to drink or anything. I wasn't even sure I could drive to my

meeting, but I had to go. Anyway, I didn't leave till 12:50 for the

meeting and has gotten slightly less movement. After I got home I

called the oncall pulmonolgist as I was still trembling but not as

bad. He said it was unusal for these symtoms to go on for more than

45 minutes (it was 4 hours later at the time) but not unheard of.

He thought I ought to be feeling some better in terms of the

coughing by now. So, he said not to use the nebulizer and just use

the inhaler and call my doc on Monday and that if all this asthma

medicine is not helping then there might be another cause. Well, I

was still trembling, although less, at 6 and very worried that

perhaps the medication had triggered my movement disorder. The

pharmacies here close early on weekends and so I couldn't call a

pharmacist to see what the PDR said. I called my psychiatrist and

he called back after a while. I felt bad for calling on a Saturday

evening, but really felt the need and he was concerned and took my

concern seriously.

In any case, he said he didn't think the meds could trigger Tardive

Dyskinesia, but that he wasn't positive and so he recommended not

using any asthma medication until I talk to the doc on Monday. He

said a neurologist would be the one to answer the question. Well, I

haven't presently got a neurologist, although I could maybe call the

one I saw when I first moved here and was still on meds for it. In

any case, then I started thinking about what the doc had said about

possible causes for the cough besides asthma and one of the options

was reflux. I thought of this before the pharmacies closed, so I

called and asked when I had stopped taking Acifex for reflux and

changed to prevacid. Well, it was back in November. My new

insurance, which started in Oct, wouldn't let me have the Acifex

without trying two other meds first. The first one made me sick

instantly so I took prevacid. Well, the coughing started in Dec.

So, now I am wondering whether this is all related to the reflux

stuff. Maybe I do have asthma since I have been told by an

allergist years ago that I did, but I sure wasn't having problems

with coughing until I changed reflux meds.

It is now 9:30 and I am still trembling but not so hard. Coughing

quite a lot though. So, I'm going to call the pulmonologist on

Monday and see what she says, but if she says to investigate the

reflux then I'm going to call my internist and see if she can talk

to the insurance company about me doing a trial back on Acifex and

see how I do. I honestly don't know if she will do that. But she

does believe in Reflux and she did say at first that it could be

from reflux. So, if she won't fight with the insurance company

maybe she will have another med I can try but if that is the case I

think I'm going to have to go see a gastroenterologist. I haven't

seen one since I moved and maybe it is time. I hate the thought as

I'm sure they'll insist on another colonoscopy or other test and I

am really in no frame of mind or condition to go through that right

now.

Having now been to the pharmacy 3 times already this week and paying

a $40 or $50 copay each time and all on new meds, I am going to have

to call my dad again and ask if he will cover my meds for the

unforseeable future. I figured I need to give him facts, so I

counted and at present I am taking 16 prescription meds plus some

supplements. At $50 bucks a shot that's $600 just for meds. No

wonder I'm out of money the day I get my check. I pay the bills

that day and there's nothing left and I still haven't gotten the

meds for the month. I didn't have the courage to look, but my

regular meds probably need some refills this month. I have no idea

what this would all cost without insurance, but I can't say that the

insurance is enough at all. Unless he agrees to help I can't stay

on them and with most of my meds going off them would truly lead to

dying because of my depression. I never ever thought I would be

someone to take 16 medications. Good lord, I don't think my

grandmother took even half that and she died when she was 93! When

I first had my thyroid out and knew I had to take one med the rest

of my life I hated it totally. Well, I guess I was spoiled back

then. And I just got a letter than my insurance rate is going up

some and the co-pays are also going up.

Anyway, if I am still having movements when I get up in the am I'm

not sure what I will do. I thought about calling the hospital and

asking if I could talk to whoever the neurologist is on duty at the

time, but I don't know if they would answer my question. All I want

to know is if the asthma meds can cause movements. I don't want

treatment advice or anything, just a bit of knowledge. Now, if I

were still doing speech I'd have a neurologist I'd know and could

call who'd know someone he could ask if he didn't know. Somehow I

think tracking down the neurologist I used to work with 10 years ago

in Wisconsin is probably not a good idea.

Sandrea

[Guest guest]

Hi Sandrea,

I am sorry to hear about what you are going through. I am not sure if this

information will be of any help to you but here goes. My son has been a chronic

asthmatic since he was a year old. He uses a ventolin puffer and also has had

to use the nebuliser more times than I would like to recall. At first we used

to use the ventolin solution in the nebuliser and he had serious reactions to

it. Shakes and sent him really hypo the whole time (I went to see his teacher

to tell her that he was on the nebuliser and she said-well that explains a lot

she said he has been climbing the walls and we could not work out why) anyway,

we changed his medication to Bricanol in the nebuliser and he had far less side

effects and when I had pneumonia the doctor told me to use the nebuliser to help

my breathing and I had the same reactions as you and I just could not handle

using it. So perhaps you could ask the doctor if there is a different solution

you could use in the nebuliser. Might

be worth a try. Hope you get it all sorted out quickly.

Regards Nerida

[Guest guest]

Hi Sandrea, just wanted to share that this is exactly what happened to my

son. They thought he had asthma, but the meds just made him worse, not to

mention very, very shaky. The shakes are a common and significant side

effect of some asthma meds. He did go on to develop ME, though he did get

over it. It could be a dosage issue (very common it ME or CFS), it could be

an allergy to an aspect of the med, like the propellant or preservative, or

it could be just the effect of the drug. I hear you that it is very scary,

because you have had shakiness issues before, but I’m just saying not to

make an assumption that it has reactivated your problem. For my son,

eventually we concluded that the ME was just affecting his lungs at that

time; it can “attack” different body systems at different times. I know you

don’t necessarily have ME, but there you go. The money stress sure doesn’t

help anything either. It’s awful to not even know if you should go to the ER

or not. I hope you get it sorted out very soon. TC, Aylwin xox

[Guest guest]

Thanks for the suggestion. I am calling first thing in the morning. I

am feeling horrid.

Sandrea

Re: Really scary day

Hi Sandrea,

I am sorry to hear about what you are going through. I am not sure if

this information will be of any help to you but here goes. My son has

been a chronic asthmatic since he was a year old. He uses a ventolin

puffer and also has had to use the nebuliser more times than I would

like to recall.

[Guest guest]

Good please let us know what the doctor has to say and how you go.

Nerida

Sandrea Kornblum wrote:

Thanks for the suggestion. I am calling first thing in the morning. I

am feeling horrid.

Sandrea

[Guest guest]

Thanks for asking Nerida. It has really been a horrid weekend and a bad

day. I am still trembling enough that I had a pretty hard time filling

my pill box for this week a little while ago. I got the pulmonologist’s

assistant on the phone and he said there is no connection between the

tardive dyskenesia and the asthma meds so that is a huge relief. He

also changed the meds for my reflux and I will go pick those up in a

little while. Hopefully that will help. I stopped taking the

prednisone after the second dose yesterday and didn’t take the last two

doses. I am extremely agitated and nothing seems to be relieving that

feeling. I even tried to take a bath but my body is just on this fast

speed feeling internally though I have no energy and am extremely

nauseous. I am really hoping that this feeling will wear off soon as it

is really hard to tolerate. I took some cough meds last night so I was

able to sleep, but then those took ½ the day to wear off today and are

only supposed to last 4 hours. Unless I take some more tonight there is

no way I will sleep as I am way too wound up. Maybe I’ll just take ½ a

dose. I already take 3 meds just for sleep but got no sleep at all

night before last having taken the prednisone. I am feeling truly fed

up and frustrated with all this health stuff and doctor’s and want a

vacation from myself.

Sandrea

Re: Really scary day

Good please let us know what the doctor has to say and how you go.

Nerida

Sandrea Kornblum <misssweetpeas@ <mailto:misssweetpeas%40verizon.net>

verizon.net> wrote:

Thanks for the suggestion. I am calling first thing in the morning. I

am feeling horrid.

Sandrea

[Guest guest]

Oh Sandrea,

It is so horrible isn't it??? I was prednisone for a short while and they put

me on it to rev me up. My CFS was sooooo bad I could hardly get out of bed and

the prednisone certainly helped with that. Unfortunately, it does take a little

while for it to all get out of our systems but you will soon feel better I am

confident. Try to take it as easy as you can and be good to yourself until you

start to pick up.

Regards Nerida

Sandrea Kornblum wrote:

Thanks for asking Nerida. It has really been a horrid weekend and a

bad

day. I am still trembling enough that I had a pretty hard time filling

my pill box for this week a little while ago. I got the pulmonologist’s

assistant on the phone and he said there is no connection between the

tardive dyskenesia and the asthma meds so that is a huge relief. He

also changed the meds for my reflux and I will go pick those up in a

little while. Hopefully that will help.

[Guest guest]

Hi Sandrea, well that’s what I call a BAD drug reaction…I do hope that it is

clearing your system for now. One thing I do is NEVER take a whole dose of

anything new…I just try the teeniest amount, then a tiny bit more the next

day and so on. “Us types” are notorious for drug reactions, side effects,

and lower dosage needs. Hard with a puffer I know…Anyway, Prednisone is

quite a heavy drug with immune effects…to be avoided IMHO unless there is

absolutely no choice (my opinion). And asthma drugs like Ventolin are pure

speed…I tried my son’s puffer once and shook for hours. It’s like

adrenaline. Anyway my dear here’s hoping the reaction is clearing for you

and you are starting to feel better. Keep us updated! Take EXTRA Care,

Aylwin xox