Update on the congestion/panic

It's "blue", I'm on a different computer..

Regarding my situation of not being able to sleep at night because of
allergies, my nose stops up and then I have panic attacks because I can't
breathe, and I'm not at even 8 weeks along yet.....

I put in a call to the doctor's office today, my appointment is not until 8
weeks since that'll be my first appointment. (As a reminder, this is a
different OB, I have seen him once for an exam, but previously I saw another
OB group who I used last pregnancy and for years for my exams- they never
were too helpful on dealing with any OB-related issues or medicines, so I
switched for this pregnancy hoping to get a better group of OBs). The first
ones sort of had a reputation for being cautious and not willing to
prescribe any medications except antihistamines and Zofran or Phenergan for
nausea, nothing for pain, and nothing else. It was Tylenol only with them. I
know this second group of OBs has a better reputation and doesn't seem to be
that conservative, as they mentioned they do prescribe whatever is safe,
they allow narcotics with the need for them, etc.

So I called in today after over 2 solid weeks of sleepless night and stuffy
nose (allergy related). I feel crappy because I go to bed at 10pm, midnight
at the latest, I am unable to nap during the day because I can't get to
sleep- I am exhausted but can't sleep! o at night I go to bed, exhausted and
relieved the day is over, and I can't get to sleep. Part of is the jaw
clenching/tension, and part is merely my nose being stopped up and it's this
inability to relax and sleep plus breathing that triggers panic attacks. I
don't get panic attacks while not pregnant because I use a benzodiazapene
once daily at bedtime and Zyrtec-D. The benzodiazapene taken just once in a
small dose at bedtime effectively prevents all panic attacks and to my
_delight_ and comfort, makes my jaw unclench and my legs stop squirming all
over the place. It doesn't sedate me by making me sleepy but I get goooood
sleep by being able to lie still and relaxed/unclenched and no fear of
waking up in the middle of a panic attack. The Zyrtec-D I take right before
bed as well and my nose stays unstopped for at least 8 hours. This
completely, completely resolves all of my problems in one whack, these 2
meds.(I am summarizing here in case someone missed this). Now, I have been
on nothing since finding out I'm pregnant, before being 4 weeks along. 3
weeks of no medications and I am having a hard time. I already called the
doctor's office to let them know of this, that I am not taking anything, but
am having problems, and am trying not to take any meds for the first
trimester. However I was asking them what to do since Sudafed is off the
market in my state, it's not even behind the pharmacy counter in my area,
and I just found out drugstore.com won't deliver anywhere in my state due to
a new law. You simply cannot get plain pseudoephedrine here at all. Your
only chance is a pregnancy no-no- ClaritinD or ZyrtecD. They had no
suggestions for me, they said the usual- try Vicks Vaporub (doesn't work),
try saline nasal spray (sadly, doesn't work), try switchint to Claritin
(because Zyrtec alone without -D is not helping, and Claritin (non-D) is the
same for me as Zyrtec- the antihistamine will help my itchy watery eyes and
RUNNY nose but not nasal congestion). One final suggestion the nurse had was
Benadryl. I have a reaction to ths medication, it causes my hair to crawl
and me to be unable to sleep until it wears off, and doesn't do a thing for
nasal congestion.

I am starting to worry because all that got me through last time was
Sudafed. I had panic attacks but at least this took care of the breathing
which did lessen the panic). I am more worried now because the nurse says
nothing can be done in first trimester- well, I am trying to suffer through
that as I do worry about meds and development. But she sort of said they do
not allow any anti-anxiety meds that help with panic attacks at all, period.
She said if I still have panic attacks they will ask me to take Zoloft or
Paxil or something. I am going to refuse this, as I have in the past, before
using benzos, and if anything I have an increase in
anxiety/lightheadedness/panic attacks at night when I use them. I have BTDT,
and I tried several anti-depressants for months each. It took me years to
figure out that I feel best and resolve all my problems with a low dose
benzo at bedtime, even just only as needed, and a nightly ZyrtecD (whether I
need it or not, it prevents my nose from stuffing up while I am asleep).
I've truly tried everything.

So.....I rtook the advice here about getting referred to a specialist, and I
asked the nurse if there are perinatology specialists who specialize in
pregnant women and medication and she said "NO". No, she said...I know this
can't be true. She said they can send me to a specialist for allergy though
they may not specialize in pregnant women they will refer back to the OBs
before prescribing anything. Then what is the point??? If the OB has to
approve it...he might as well WRITE it. I asked again "So there are no
specialists who deal with pregnancy, and are more specialized in medication
prescribing than OBs" and again she said "No. Any doctor you see will refer
back to our OB before prescribing medication. There are no specialist for
pregant women". ????? Then what is perinatology?

She did say they may have more options for me after the first trimester and
especially if it's later on, but no panic meds will be ok. I take this to
mean no benzodiazapenes such as Xanax are ever approved during pregnancy.
I've been reading up on it and I see info out there that they are prescribed
sometimes, even if it's limited and as a last resort, and
as-needed/sparingly only.

What I am thrown about is I was going to see a specialist as this group
recommended, and she is telling me there is not one. Should I pick up the
phone and call around, search for perinatologist? I do remember from my last
pregnancy I did try to consult a certain specialist about his area of
medicine and I told him I was pregnant beforehand (as I obviously was from
looking at me! I just didn't want him to think I was trying to go around the
OBs, just that I needed more help)...and the specialist would not do
anything without the OBs consent, just as the nurse told me today. But,
wouldn't a perinatologist themselves being that they are suppsoed to
specialize in pregnancy, be able to make an independent evaluation?

I am about to give up, and probably won't post more about this, as I cannot
control it. I just have to cope with the issues at hand as best I can. but
it stinks. It feels way too soon for this, I'd feel better if I didn't have,
you know, 34 weeks to go!! I could bear 4 weeks, or 8...but 34 is a heck of
a lot.

beyond the pale wrote:

So.....I rtook the advice here about getting referred to a specialist, and I
asked the nurse if there are perinatology specialists who specialize in
pregnant women and medication and she said "NO". No, she said...I know this
can't be true. She said they can send me to a specialist for allergy though
they may not specialize in pregnant women they will refer back to the OBs
before prescribing anything. Then what is the point??? If the OB has to
approve it...he might as well WRITE it. I asked again "So there are no
specialists who deal with pregnancy, and are more specialized in medication
prescribing than OBs" and again she said "No. Any doctor you see will refer
back to our OB before prescribing medication. There are no specialist for
pregant women". ????? Then what is perinatology?

Your best bet is likely to go to a good allergist and/or a
good psychiatrist and then work with them to find an OB who is
willing to discuss the issue with them and work with you to find
something that will work. This might not be the right OB for you,
and it may be that an allergist or psychiatrist can help you find
the right OB.

What I am thrown about is I was going to see a specialist as this group
recommended, and she is telling me there is not one.

Well, it's almost certainly going to be collaborative
care. I suppose it's technically true that there isn't a
particular specialization in "obstetric allergies," but there
are people who are experts in one area and willing to work
with experts in another area.

Should I pick up the
phone and call around, search for perinatologist? I do remember from my last
pregnancy I did try to consult a certain specialist about his area of
medicine and I told him I was pregnant beforehand (as I obviously was from
looking at me! I just didn't want him to think I was trying to go around the
OBs, just that I needed more help)...and the specialist would not do
anything without the OBs consent, just as the nurse told me today. But,
wouldn't a perinatologist themselves being that they are suppsoed to
specialize in pregnancy, be able to make an independent evaluation?

I think you will have better luck talking to allergists
and/or psychiatrists to find an OB through them. It may be that
you'll have to escalate to a perinatologist to find someone who's
willing to take on a case that goes beyond a textbook, uncomplicated
pregnancy.

I am about to give up, and probably won't post more about this, as I cannot
control it. I just have to cope with the issues at hand as best I can. but
it stinks. It feels way too soon for this, I'd feel better if I didn't have,
you know, 34 weeks to go!! I could bear 4 weeks, or 8...but 34 is a heck of
a lot.

Don't give up. I know it's annoying to have to hunt around
for a care provider, but there may well be *someone* out there who
is willing and able to work in a team to deal with your issues.
This does happen frequently with all sorts of complicating medical
issues. Someone out there knows which OBs or perinatologists are
open to taking the time to work collaboratively to solve problems
like these. Call around to find them. OBs or perinatologists
probably aren't the place to start, as there are obvious conflicts
of interest. The allergists or psychiatrists, on the other hand,
may be more likely to cough up a name of someone they've had a
good collaborative relationship with in the past. There aren't
any guarantees you'll find someone local to you, but it's
definitely worth the effort.

Best wishes,
Ericka

Ericka Kammerer wrote:
snip
Don't give up. I know it's annoying to have to hunt around
for a care provider, but there may well be *someone* out there who
is willing and able to work in a team to deal with your issues.

I totally agree with Ericka. Look through the phonebook, call around, if
one gives you a "Sorry, no." ask them if they know someone who might
know more about pregnancy and psychological/psychiatric
complications/conditions.
Also, I don't think you'll have to exagerate much. I mean, you're
already not getting enough rest. Plus: Panic attacks are not something
to be taken lightly. It's nothing you can control without the medication.

In germany the inserts usually say something like "Only to be taken
after strict risc vs. usefullness analysis." for pregnant/nursing women.
For me that means: If I have no alternative at all. And if I can take
the smallest dose possible only when I really need it. That's when I
take it.
As far as I know there's no astma spray available that's been thoroughly
tested on pregnant women, so I got the one with the lowest dosage that I
knew would work for me and I take it only when I can absolutely not go
without it. Because not getting enough oxygen which does cause problems
for me and the baby vs. possible side effects that may or may not cause
problems for the baby... I'd rather not end up in the ER.

good luck, I know its tough. I called about 50
psychologists/pychiatrists/neurologists last year before I found one who
had free appointments for me right then rather than 6-8 months away.
It's tough, but better than giving up after one nurse tells you "no" ;-)

take care!
nicole

someone who is a specialist in medication for pregnant women is not likely
to be someone who's actually on the frontline prescribing it, the real
medication experts are usually pharmacists, not MDs, but a good MD will know
how to access that knowledge. So you likely can't see the kind of person you
asked the nurse for a referral to.

She may well be right though, that even if you see a specialist in the area
you need, that they may suggest a medication, but not be prepared to take
the responsibility of prescribing it and then if it's an area your OB has
little experience or sympathy with they may not be prepared to take the
responsibility either.

The problem is, people who should know don't always know, I was prescribed a
medication by a so called expert whilst breastfeeding that was the least
adviseable in it's category for breastfeeding and not even near the top of
the list for treating the particular problem, so I can entirely see why
someone else would be loathe to prescribe what another person told them to.

It sounds to me like you're going to have to do some shopping around, what
does you're insurance require? if it requires referrals, there is still
nothing to stop you ringing up somewhere, asking questions, make an
appointment if they'll let you, then arrange the referral, from the messages
hear on the various call systems, it seems this is a common way to work. I
think you are going to have to make this your job to sort out and it may
involve changing OBs.

Anne

"Anne Rogers" wrote
It sounds to me like you're going to have to do some shopping around, what
does you're insurance require? if it requires referrals, there is still
nothing to stop you ringing up somewhere, asking questions, make an
appointment if they'll let you, then arrange the referral, from the
messages hear on the various call systems, it seems this is a common way
to work. I think you are going to have to make this your job to sort out
and it may involve changing OBs.

Anne


My insurance luckily does not require referraks, you can self-refer to any
specialist. Specialists are in a different tier from regular doctors
(primary care), the primary care doctor has to be in-network.

This is all so complicated. If several opinion are opposed to a certain
medication, I wouldn't feel right just going around until I found someone
who did it. What's confusing me is reading on the Internet, people have used
the medications I am concerned with while pregnant. It's sure not a light
decision or preferable choice, but it seems to be ok. However, if there's so
much out there against it, I don't feel comfortable in "wanting" it.

Oh--I found something yesterday that will actutally do a LOT to help this
situation, Sudafed/pseudoephedrine! Going from my last pregnancy experience,
I should be fine now that I have it as I know I will be able to breathe,
yay. I am only taking a half dose, and only at bedtime which is when I have
the problem. And I am doing everything I can to use it sparingly (meaning,
trying to skip as many nights as possible but I took it last night and slept
very well. The pharmacist could not believe I can sleep after taking it, it
keeps her awake. I can see this- but when you're me and you cannot breathe,
you can sleep if you can just breathe! ) I think I am going to just try to
get by with sparing amounts of Sudafed and this actually relieves me a lot-
I am very uncomfortable from the jaw clenching, but the only thing that
makes me feel like I need meds to cope is the congestion and panic attacks.
So hopefully this eliminates my problem and I can get by now even if really
uncomfortable. It did the trick last night, one 30mg pill, and I made it
through 10--yes 10--hours of sleep!

I had searched all over for Sudafed(pseudoephedrine hcl). Allll over. CVS
told me their pharmacies no longer receive stock from the manufacturer. I
was also told that by a couple other pharmacies including I think a Target
pharmacy, they don't even have it behind the counter. I had searched
drugstore.com and it was gone from there too, but now it's available again-
I placed an order and was getting ready to fax in my photo ID and the order
kicked back saying it can't ship to my state due to state law. Ack! So, we
were in a grocery store and my husband said he was going to ask the
pharmacist if they had any behind the counter. I said "Really now. Whatever,
the drug stores don't have it, you think a grocery store will?!" Well, they
did :O And said they always had, and didn't see any reason why they
wouldn't. They couldn't believe CVS doesn't, the pharmacist used to work
there. She said she's going to ask.

Whew. I was getting angry at that law. I am all for regulation to stop the
meth production it was used for, but it was going too far not to be able to
get it anymore. The pharmacist last night even told me the "new" ingredient
doesn't work for anyone. She said not a single person she knows finds relief
from it. It makes me wonder how it stays on the market, someone must at
least be buying it.

beyond the pale wrote:

This is all so complicated. If several opinion are opposed to a certain
medication, I wouldn't feel right just going around until I found someone
who did it. What's confusing me is reading on the Internet, people have used
the medications I am concerned with while pregnant. It's sure not a light
decision or preferable choice, but it seems to be ok. However, if there's so
much out there against it, I don't feel comfortable in "wanting" it.

You're not shopping for a particular drug. You're shopping
for a team of professionals who will listen to your concerns and
history and help you arrive at an effective solution, weighing all
the relevant risks and benefits in your personal situation.

Best wishes,
Ericka

You're not shopping for a particular drug. You're shopping
for a team of professionals who will listen to your concerns and
history and help you arrive at an effective solution, weighing all
the relevant risks and benefits in your personal situation.

exactly, it just sometimes helps to have a drug in mind that you can say "is
this ok?", sometimes people need ideas! Personally I think benzodiazapines
are off the agenda, they might be ok in the middle of pregnancy, but there
is enough questions that I'm not comfortable with them, but there are
alternatives, I guess when trying to address the issue of muscle spasms you
might need a rheumatologist, or something else. I suspect most drugs that
address muscle spasms will also have an affect on anxiety and panic attacks,
because the mechanisms are quite similar, in fact psychological help is
warrented for people with muscles spasms and no other symptoms as they are
so closely related. This is all something I'm going to have to look into
myself, I have a genetic syndrome that is known to cause widespread muscle
spasms, it's also known to respond less well than other causes to localised
treatment, I currently manage on localised treatment and the occasional
diazepam, but it's not always working that well, so I need to figure out a
better management plan and I will need to get information relating to
pregnancy, DH is getting keen!

Anne