12-18 month support

[[Co...]]

i think I can be my own worst enemy according to my therapist.  Me too on that opinion.  I have a scrip for 40mg a day of propranolol to prevent the migraines and I am afraid to take it after my benzo disaster.  It can also help with the anxiety with my meetings.  I am afraid of bad side effects and I am afraid of using it as a crutch. 

Maybe my line of thinking should be that I can take it for a while to just break the cycle of migraines and taper off.  I don't know.  I jsut took a 10mg pill and I am nervous as hell. 

 

Thoughts my friends?  FG, I know you took it.  I jsut find these headaches debilitaitng but meds scare the hell out of me.     

 

.....Drew,....you and I came from the same mold. I also have atenolol for bp spikes in panics. I was also advised to take it daily, but my bp falls to low. ....There are good reasons to not take it daily....and like you, I am afraid to be on it if I don't have persistent elevated bp.  ....I think k any time we can get through without meds that we truly don't need the better off we are. Does the propanolol help your migraines?  .....My bp med made me slightly dizzy and created bp that went up and down. If you take it daily you have to taper off....I am not trying to feed your fears....I am affirming for you that you are right....no matter what drug we consider....they all have side effects. ....I use crumbs of mine when I need it, but I haven't needed it for a long time....So sorry Drew that you are in the anxiety soup today....me too....I am just a milliter ahead of a panic...I got slightly dizzy ( from anxiety)  the dizziness drove up my anxiety...the anxiety increased my dizziness....well you know all to well that loop....mentally sitting on my hands not to go to urgent care....I have been here a million times....never had a stroke yet.....exactly like your comment the other day...." I have died a hundred times in client meetings".......

.......Research your bp ....just because your therapist says to take it doesn't mean you have to if it doesn't feel right to you..... I would think the root question would be....does it help? ....and does it help consistently enough that you want to commit to it?....I would also start at half of the prescribed dosage.....Why oh why is there not a magic pill for anxiety and panic. I was reading an article that said the leading mental health issue is depression....followed by our friend anxiety/panic. I can only imagine the millions of people continuing to be prescribed these drugs that have turned our lives upside down.....Thinking of you Drew.....coop

[[Co...]]

Coop, just to let you know..if you like vanilla, not all stores have it ..but the vanilla kefir is my fave.

It's so hard to reach a happy balance in out bellies..to much acid..not enough...when we have so much going on with other symptoms also.

I also had to go the prune juice route for a while..now it goes the other way...sometimes back and fourth.

 

I know you'll be bringing your dog with you to the Abbey, so I'm putting down extra blankets because it's raining, he will might also want some good doggie snacks. I will run to the store and set out a smorgasbord for us all, surely their will be something we can eat without tummy trouble.

 

See you in a bit..oh..might wanna check if others wanna come along...got plenty of blankets and tea.

 

.....Beulah....you are an absolute comfort....I am bringing Drew with me....and yes my dog....We will have vanilla kefir....and nilla vanilla cookies....

.......You have been such a source of reassurance for me with this belly stuff....Every time I post and say ," oh I have this....and this...."... you post back and tell me that you have had exactly the same....and no pancreatic cancer...That is such a centering thing ....Beulah had/has this and she did this and such for it....thank you so much Beulah....are you still feeling like your wave is rolling out.. love to you friend....coop

[[dr...]]

Coop-for it to work on migraines you have to take it daily for a bit.  My BPis fine.  I just haven't taken it more than a few times per month for heart palps.  Taking something regularly scares me but the migraines are causing a chain reaction that is around 2-3x per month.  They affect me mentally with high anxiety, DR, bad tummy, etc...the pain isn't the worst symptom and it's a five day ordeal.  The doc gave it to me for migraines as the least worst medication option.

 

  I'll think on it but I'm leaning towards taking it. I'm thinking I'll take it for maybe four to six months and depending on how my healing goes taper.  I'm pretty damn sure this migraines are being multiplied by a factor of 10 in recovery.

[[Co...]]

Coop-for it to work on migraines you have to take it daily for a bit.  My BPis fine.  I just haven't taken it more than a few times per month for heart palps.  Taking something regularly scares me but the migraines are causing a chain reaction that is around 2-3x per month.  They affect me mentally with high anxiety, DR, bad tummy, etc...the pain isn't the worst symptom and it's a five day ordeal.  The doc gave it to me for migraines as the least worst medication option.

 

  I'll think on it but I'm leaning towards taking it. I'm thinking I'll take it for maybe four to six months and depending on how my healing goes taper.  I'm pretty damn sure this migraines are being multiplied by a factor of 10 in recovery.

 

.....if it helps in all those ways....and the side effects are small, it might help you through this....just research it so if you do have any side effects you will know where they are coming from. I think our primary goal in w/d is to stay off of benzos....everything else is secondary.....If you decide to go on an every day therapy I truly hope it helps the migraines.........coop

[[Co...]]

Coop-I used to drink the goat milk kefir and had no issues at all.  Not sure if they have it up by you but you are in a earthy crunchy/granola state like me.

 

...yep....granola...organic.. .farmers markets everywhere here...I don't know if I could do goat milk though...I think I will start with plain old milk kefir....vanilla sounds about right...I have a lot of respect for anyone who can do goat milk kefir...

[[Fi...]]

Drew--more regarding propranolol.  In the beginning I didn't want to be on something all the time, just like you don't, so I tried taking it preventatively when something stressful was coming up.  That didn't last long because I couldn't predict that accurately what was actually stressing me.  I think I gave up trying when I got a massive relief migraine just because I'd wrangled my young family through the dressing up and photography session for the church record book!  So I went on daily, but I never took the 30 mg originally prescribed.  I took a 10 in the morning and a 10 at night.  Very occasionally, if something massively stressful in the evening came up, I would take the nightly dose BEFORE it, rather than right before bed.  It seriously helps.  You know musicians take this before performances.  It just reduces the adrenalin that, when there's too much of it, can diminish the quality of a performance.  Of course as I'm sure you know as a performer, you don't want to be TOO damped down.  That adrenalin is often your edge.

 

I did remember one other side effect and that was the occasional snap awake nightmare.  I called them snake dreams.  I would startle awake actually SEEING a snake or a dead mouse in the bed.  I wouldn't have trouble going back to sleep, but it wasn't fun.  The worst time was when I threw myself out of bed to get away from something, caught my big toe in the sheet and actually broke my toe!  It was a week before we opened with See How They Run at our community theatre.  Do you know this comic farce?  I had the choice role of the saucy cockney maid.  The show had to go on of course, but my toe hurt!  I also worried that I was going to give my husband a heart attack.  And the older you get, the more serious the consequences of throwing yourself out of bed can be!

 

My husband always insisted I had been freaking us awake forever, but I noticed that I hadn't had one of those dreams since I went off the prop.  When I realized my blood pressure had gotten out of control after going off of it, I panicked and went back on. My blood pressure immediately corrected, but on the 12th day I had the first snake dream, the 13th the second etc. and then switched to another BP med which I was able to go off of after another 8 months.

 

These dreams, though, were NOTHING compared to what you are going through on a daily basis.

 

Bottomline--I just don't think propranolol is that scary.  You can go Googling and find scare stories I suppose, but I kind of doubt it.  I used to Google it trying to see if others had trouble keeping weight off while using it, and I don't recall ever coming upon anything remotely scary.  When you think about it, if you're going to take something to help keep you steady, doesn't it make sense to take it on a steady basis?  It also saves all the mental energy that goes into forever be deciding whether you can justify a dose.

 

Again, I did have big fatigue when I first started it, but that didn't last long.  If you try it and that happens to you, no need to feel that's what you've chosen for the duration.

[[No...]]

Hi Gang ... the cataract thing was a no brainer for my wife, as it should be ... the cool thing is she gets another couple of weeks off ... and we are hoping they can do her other eye soon ...

 

Did I ever mention how much I enjoy being in a hospital ... not ... at least I didn't have to sit around there the whole time ... meandered around for a couple of hours and then went back and waited ... they expect folks to sit in a chair and be nice and quiet for three hours while they do the cataract prep and surgery ... and then you can take the patient home ... and no, you cannot sit with the patient while they are waiting and prepping ... you are supposed to just sit in a waiting room and they will call you when they are ready ... right ...

 

Lost my way back from the washroom and accidently found myself outside ... darn ...

 

Anyway ... all is well ...

 

So ... a bunch of us are on the wave train ... chug, chug, chug ... the only bad thing about the wave train is that loud whistle they blow ... scares the dickens out of me ...

 

 

[[Co...]]

Nova,...so glad the surgery went so well...I read a Discovery article the other day that reported on a nearly available eye drop to actually disolve cataracts. ..wish that would have been on board for your wife....Glad you got 'lost' and went out the wrong door to outside....Sitting around in a hospital is spooky....

.....Yep, the wavy train made a stop at my place this morning...wouldn't move on until I boarded..  not a happy travel, but the intensity of the anxiety is winding down. I am sure I will actually be in bed for this day....trying to convince myself that it's ok to hang out in bed if that's what it takes today. .. haven't had a bed day for awhile...

.....How is your wave ?....Wishing you rest and sunbreaks...coop

[[Lo...]]

Hi everyone, I hope someone could chime in. Every since mid to late July certain symptoms have really ramped up 

 

I'm over the 15 months off threshold. Anyone between 15-18 experience a serious ramp up with symptoms?

 

This is crazy, just trying to stay the course. But its hard.

 

My balance is all over the place, the head pressure is back, rocky boat sensation almost daily...the pulling sensation of my head. It's horrible.

 

Praying for all of you. 

 

LM...

 

 

16 months off here....slowly clombing out of a bad wave where symptoms have rampped up, all after a real good month where I thought bad waves were behind me. I get the pulling sensation in my head too...sucks! (no pun intended .

 

Itis not unusual to have intense symptoms this far out, as others in this thread can attest to.

 

Hey Robert, sorry you too are in the same boat. I'm praying the wave is over for you. From what I read on other threads the 15-18 month area is very tricky. Some have been totally symptom free and then boom...they hit this mark and get slammed all over again!

 

Praying for you. Keep your head above water. 

[[Si...]]

Hi everybody, I've been mostly off the boards except checking in briefly sometime. Last two days have been ok. Better than most of the last 2 and a half weeks. Still not out of the wave, but baseline is better. I'm very slowly starting to sleep better, even though it's still up and down. My headaches are still bad, especially at night. I think it's mostly from being in office staring at a computer all day. It's nothing like what you migraine sufferers are going through I'm sure. It's more of the burning head pressure garbage. I'm hoping this is the home stretch for me. The first time I felt better after around month 5 was when my sleep started to become more normal again. I hope I'm not jinxing myself though. I remember when I was feeling nearly healed that I would get randomly hit with symptoms for about 30 minutes to an hour and then they would be gone. Much like what FJ has been going through recently. I was drinking coffee and eating what I wanted without any problem too. I think my big screw up was drinking large amounts of alcohol on occasion. That will be something that will be off limits for a long long time now. I may eventually try to have one in a year and see what it does. Hope everyone's hump day is going ok.

 

[[Fi...]]

. I remember when I was feeling nearly healed that I would get randomly hit with symptoms for about 30 minutes to an hour and then they would be gone. Much like what FJ has been going through recently.

 

 

I think you must be referring to somebody else?  FJ

[[dr...]]

That's me Siggy.

[[Si...]]

. I remember when I was feeling nearly healed that I would get randomly hit with symptoms for about 30 minutes to an hour and then they would be gone. Much like what FJ has been going through recently.

 

 

I think you must be referring to somebody else?  FJ

 

Didn't you say you were getting hit with panic attacks randomly even though you feel 100% most of the time? Maybe I thought it was you, but it's someone else? Sorry I guess I could go back and check. My memory has taken a serious hit from w/d too.

[[Fi...]]

Oh, okay, yeah, Siggy, that was me.  Those "attacks" are like five minutes once every eight weeks at this point, so I didn't recognize myself in your description.  Sorry!

[[dr...]]

My day was so much better today. I didn't realize I was going to be on a panel before fifty peers.  I thought it was twenty peeps or so.  Had anxiety but did okay. Still way too hard to do that stuff.  I did take 10mg of propronolol.  I was in the meeting for four hours. 

 

I decided I will start the propronolol at 20mg a day to try and vanquish my migraines.  Like an idiot I read the side effects but I haven't had any problems yet so onward I go.  It's 1/4 of the recommended dose.  Thanks for the input from all. 

 

Drew

[[Gr...]]

Good morning 12-18 ( and beyond) buddies....I have been off again for a bit and have not read back on the pages yet this morning....I wish I could say that I have been off because an Effortless Mind window has swept me away into the land of happy normal living ... . frustratingly.. .that is not the case. I have been in a wave and not wanting to add misery and discouragement to the communal healing. ...But here I am this morning with wavy updates because it really does help to bring it to the thread, whine and complain , touch base with friends and then try to let it go and accept and surrender to the process.  My belly pain continues ..  and my scans are a week out. In spite of going on the low otc prilosec things continue to not really improve consistently. Seems to have almost an every other day pattern. Yesterday was painful. Eating is a blind risk, even mashed potatoes can hurt.. hot packs to my upper belly and lavender Epsome salts hot baths help tempirarily. My sleep is iffy, though not as bad as some others. I am generally asleep by 11, but awake for the day by 4/430. I had a nice little nap yesterday that ended in a toxic wakeup, that crazy few moments of disorientation and fear....and a terrible upper belly cramp that had me in intense pain ( for only a minute) ... .and of course....gripping health fear..  blah blah blah.  The belly stuff has been going on since mid May , still without relief or a clear diagnosis.  I am just worn down and discouraged. I am trying to remember that I have had some days in that 3 month block that were Effortless Mind days and some very good normal days as well. I got through my daughter's wedding in probably the best 2 days of my entire w/d..  what an alignment with the moin, stars and sun that was..  I am so thankful still for that every day.  ....I am having a bout of intrusive looping thoughts,of death/dying.. .much like I had in acute, not constant but they drag on me..  I know that they are simply w/d and they will pass. I know the belly stuff will probably show nothing serious on the scans and will eventually get better or a correct treatment will emerge... but I am not living in that 'knowing', I am being pulled into the undertow of fear and discouragement..  trying to just go with it as my zen is missing and can not be found anywhere..  This is why I have been off..  what a lot of cry cry cry .  Hate to add misery to the communal narrative. .  I will come back this afternoon with hopefully with a better take and encouragement.  Onward..  going to try to go out at least for a little while this afternoon with my daughter after she is done at classes and work.  I feel better if I am at least up and puttering around . ...

.....I am thinking of every one on this thread and truly wishing everyone some relief, encouragement, sunbreaks and healing.  .......... coop

 

Coop, just want to validate you a little.  I've been in some kind of physical wave, I really want to call it a shit storm (TY, Marj), the likes of which -- omg -- the likes of which was shocking in intensity.  couldn't stand up.  couldn't get off the couch.  bizarre reaction to eating.  sickly sweats.  dizzy. nausea.  it lifted for today, a little.  I got out, ballet.  but I've been housebound with this, getting out very infrequently.  My point.  I think this happens, I think it's normal, if there's anything normal about wd.  And we need to complain.  And of course we get scared.  I burst into tears on the therapy couch last week.  new kind of wave, I guess?  Vent away.  this was a bad one.

 

but I'm starting to think it's part of healing, it feels that way now.  Remember when we were really sick and suffering in the old waves and we would say in some paradoxical way we felt the healing at the same time, as sick as we were? that's how it's starting to feel.  I hope so, anyway.

 

Feel better.

[[Gr...]]

i think I can be my own worst enemy according to my therapist.  Me too on that opinion.  I have a scrip for 40mg a day of propranolol to prevent the migraines and I am afraid to take it after my benzo disaster.  It can also help with the anxiety with my meetings.  I am afraid of bad side effects and I am afraid of using it as a crutch. 

Maybe my line of thinking should be that I can take it for a while to just break the cycle of migraines and taper off.  I don't know.  I jsut took a 10mg pill and I am nervous as hell. 

 

Thoughts my friends?  FG, I know you took it.  I jsut find these headaches debilitaitng but meds scare the hell out of me.     

 

Drew, is the propranolol Inderal? I would take it cautiously and as needed, as Coop does.  I have to look it up, but I remember that as a drug that slows the heart down?  tell me if i'm wrong.

[[Gr...]]

Hi Gang ... the cataract thing was a no brainer for my wife, as it should be ... the cool thing is she gets another couple of weeks off ... and we are hoping they can do her other eye soon ...

 

Did I ever mention how much I enjoy being in a hospital ... not ... at least I didn't have to sit around there the whole time ... meandered around for a couple of hours and then went back and waited ... they expect folks to sit in a chair and be nice and quiet for three hours while they do the cataract prep and surgery ... and then you can take the patient home ... and no, you cannot sit with the patient while they are waiting and prepping ... you are supposed to just sit in a waiting room and they will call you when they are ready ... right ...

 

Lost my way back from the washroom and accidently found myself outside ... darn ...

 

Anyway ... all is well ...

 

So ... a bunch of us are on the wave train ... chug, chug, chug ... the only bad thing about the wave train is that loud whistle they blow ... scares the dickens out of me ...

 

Nova, I am so happy everything went well.  I've had my share of hospitals during this wd, waiting for the patients.  It sucks.  You did very well.

 

Glad the wife is getting some time off.

 

Yes, the wave action is brutal these days.  I prefer shit storm.

[[Gr...]]

Hi everybody, I've been mostly off the boards except checking in briefly sometime. Last two days have been ok. Better than most of the last 2 and a half weeks. Still not out of the wave, but baseline is better. I'm very slowly starting to sleep better, even though it's still up and down. My headaches are still bad, especially at night. I think it's mostly from being in office staring at a computer all day. It's nothing like what you migraine sufferers are going through I'm sure. It's more of the burning head pressure garbage. I'm hoping this is the home stretch for me. The first time I felt better after around month 5 was when my sleep started to become more normal again. I hope I'm not jinxing myself though. I remember when I was feeling nearly healed that I would get randomly hit with symptoms for about 30 minutes to an hour and then they would be gone. Much like what FJ has been going through recently. I was drinking coffee and eating what I wanted without any problem too. I think my big screw up was drinking large amounts of alcohol on occasion. That will be something that will be off limits for a long long time now. I may eventually try to have one in a year and see what it does. Hope everyone's hump day is going ok.

 

 

Sig, I'm so glad you're feeling better, you were having such a terrible time.  I think you're wise to lay off the alcohol.  I'm doing the same.  Hang in there.

[[Co...]]

My day was so much better today. I didn't realize I was going to be on a panel before fifty peers.  I thought it was twenty peeps or so.  Had anxiety but did okay. Still way too hard to do that stuff.  I did take 10mg of propronolol.  I was in the meeting for four hours. 

 

I decided I will start the propronolol at 20mg a day to try and vanquish my migraines.  Like an idiot I read the side effects but I haven't had any problems yet so onward I go.  It's 1/4 of the recommended dose.  Thanks for the input from all. 

 

Drew

 

.....Drew,....I think you are smart to start out low on the propanolol....you can always increase slowly if you tolerate it . I think doctors  always want to go big from the beginning. ...IMO  I also think you are smart to educate yourself about what you are taking., after all, that's how we all got in this mess......blindly taking a medication. ...Having said that, millions of people take bp medications without any problem. and it helps those who need it. ....I hope it keeps your migraines at bay.......Propanolol is a little faster acting  than some of the other bp meds so you might notice mild harmless palps when it leaves your system. I took my atenolol in a split dose 12 hours apart...I also had some slight initial dizzyness but it went away after about 2 weeks use. I went on it at month 4 and was on it until about month 7...I tapered off easily over about 3 weeks and was able to use it as needed for bp spikes after that....I went on it for the classic w/d bp problems that scared the sanity out of me in acute.

  .......Wishing you well .....coop

[[Co...]]

Drew, ....Green....yes it does decrease your heart rate ....more so in panic when your heart races. Mine would go to about 65-70 at rest and about 80 in anxiety....when you are exercising your heart rate will not increase to that very good cardiac workout target. ....Truthfully, I am happy to be off of it, but it did help me for those few months when my bp was jumping around at 180/90....I still take a dose before I go to the doctor..  If it drops your bp down to far you feel some weakness especially when you go from sitting to standing...drinking a little extra fluid with a bit of salt in it will help that..  I don't think I had any truly adverse side effects, but I won't go back on it unless I get uncontrolled bp again...

....Drew....you are going to be ok..  like Green said...just be cautious and aware of how it effects you....coop

[[mr...]]

Hiya gang,

 

Mrs. here. A teensy bit "in the soup" myself, it seems. Its tough to say, when you're healed "enough" that when this 'n that flare up, its hard saying if its "withdrawal" or not. Of course I "know" it's withdrawal, but it does sorta border the fine line in how it feels: "bitey" and "grippy" and random enough to know it is withdrawal, yet so intermittent and random in nature that it tempts the question that it is not Oy.

 

Coop, keep on being a trooper girl. Slogging along, as needed. Year Three will prove to be THE Year for you, I believe!

 

Nova, hoping this post finds you feeling well, friend Thinking of you often.

 

Jenny, Green, Sky, et al: hoping y'all get some relief soon! 90-95% is good here Just a few annoying bits to go, is all

 

Mrs.

[[Co...]]

Green...thanks so much....yep...I was in bed all day and it was the right thing to do....I am starting to feel better...Yes, I think it part and parcel of a wave . ....Yep, I was just thinking about all the things I WASN'T doing last summer....I am completely convinced that if my belly wasn't doing all these tricks I would be a solid 85% ....that's my story and I am sticking to it...

....Green....so glad for you that you got out to the ballet...Is your fatigue better?.. You sound good sx sista.  coop

[[Co...]]

Hi Mrs. ....wow....good to see you tonight....wish you were not having those pesky fast cycling lingering sx. It seems like a few of us talked about rapid cycling of sx sometime around months 10-12....not entirely sure of that time frame. I know that I was crying over it on the thread in month 10 and again in month 15....You are right it is w/d and it will end.

  You still sound so positive....we miss you....but I am sure you are out and about having a life.  Love to you Mrs.....coop

[[Co...]]

Drew, .  One more small thing about the propanol....I would get a little rush of anxiety when my dose wore off . It is harmless and normal for bp meds. One of the things bp meds do is block adrenalin....when the dose clears your system the blocked adrenalin gets 'dumped' back into your system . I could time my rushes by the clock....45 minutes before the second part of the split dose was due. It was very manageable and pretty easy to be rational about it as I knew exactly what was causing it. ....Sorry Drew, I am not obsessing about your bp med.....well ok, maybe a little. I just want to share anything I can with you if it might save you some worry about sensations you might feel with it....I will stop sharing now... before I get on your nerves...if I haven't already.  ....coop