grandmaD: turtle here

[ladybug]

Oh my gosh, Gran I am so incredibly happy to hear of all your improvements!! You have been through so much, I pray you have many more improvements. You have come so far, my fellow turtle! ❤️❤️❤️

[grandmaD]

Thanks Ladybug and lex for your wonderful support and love and prayers and hugs!  We need each other so much, don't we!

 

For years I kept saying "surely this has to give at some point, I am on such a low dose, but no, it didn't happen."  I  just hope it has finally lost its effectiveness and that I have turned a corner! 

 

Based on the fact that I switched and have now stabiised on that, I would like to think I can go faster at this point.  So am going to go up to 3% taper and cut the weeks back from 8 to 7.  Maybe even 6, since I dropped this week thinking it was week 7, but isn't, it is week 6.  Won't know until I get to weeks 3, 4 and 5 of taper which is when I normally get worse.

 

Going back to when taper pattern was prerdictable, years ago - weeks 3,4,5,6 were the worst and intolerable

Progressed to worst weeks being 3,4,5 and intolerable

Now worst weeks still 3,4 & 5 but tolerable.

 

[grandmaD]

This is quite amazing!  I did the dusting yesterday!  Hubby has done it (once a year he says is enough) and it's been a year!  The thing is, it isn't worth doing because the dust only gets to about 1/8" thick and no more.  So if you can put up with it like that, it's okay!

 

Being more alert, I also noticed the last 3 weeks he has been wearing THE SAME SHIRT!  He does change it if he goes out!  I wonder if I should say something or wait and see how long he wears it for!

 

I hope to do some watering today, but noticed the tiredness is back, but not too bad, but I will try and rest more and not over-do it as other symptoms are creeping back in also.

 

I finally got to do that update I was doing last week:

 

 

IMPROVEMENTS – BACK TO BASELINE

·         Palpitations

·         Body vibrations

·         Anhedonia

 

 

 

IMPROVEMENTS – BETTER THAN BASELINE

·         Headaches

·         Head vibrations

·         Insomnia

·         Tight chest

·         Sore heads

·         Tired

·         Slow

·         Heavy and lethargic

·         Weak

·         Depression; Low

·         Cramps, tight muscles

·         Spasms

·         Fatigue

·         Achey (back/hip/knees/shoulder)

·         Shakey

·         Prickles (like stinging nettle)

·         Shooting nerve pain in various places, esp. legs and feet

·         DP/DR - Come out of  my batcave heaps more; world seems more “real”

 

 

STILL WORSE THAN BASELINE

·         Head pressure but not as severe

·         Breathlessness much worse

·         Head banging sensation - but not as severe, not really a sudden and severe banging/thud now, just short hurtful hits

·         Anxiety every day, way higher than base but been like that 2 years now.  See a pattern of waves of low anxiety to moderate to high to adrenalin surges with dizzy and faintness.

·         Rapid Pulse way higher than baseline, but been that way 2 years now

·         Itchy – not sure why this is bad at present – actually a rash and itchy many places, esp scalp

·         Tingling

·         Leg and feet pain is intolerable and another reason for insomnia

·         Indigestion & nausea got heaps worse, but that is definitely due to high stress at present and eating wrong foods, so not counting them. 

 

For the first time ever, symptoms that improved are more than those that are worse!!

[gigi63]

Grandma Dianne, this is GLORIOUS just hearing it!!!!!

[Hazel]

So glad to hear things are going better grandmaD🤗

[grandmaD]

Thanks Gigi and Hazel!  However I feel like I've crashed again.  I never felt so good for so long - even my eyes were clear and not red or pink, but back to pink with heaviness, palpitations, breathlessness, insomnia and tiredness all crept back in and feel crap, maybe depression?

 

Maybe that was my first window??? Last week I had another incident showing my brain was alert and alive when I noticedd a new picture on the wall at my friends place - she said it has been there 6 months!!  I still took it as a good thing, while I was still forgetting other things, etc.

 

I could never relate to windows  before, but maybe that is what is happening now, especially as I've gone downhill again, which might be a wave.  I really thought I was "done" and you probably won't believe me but was thinking of "jumping off a this dose"!!!

 

It's so easy when you feel like that to think you have "arrived".  I hope I didn't do the wrong thing tapering end of week 6 instead of week 8, that might be it.  That's when we all rush off to to do another cut or go faster, and then you crash and think it is never going to end, you will never get off the dreaded poison.

[Hazel]

GrandmaD,

I totally relate to what you are saying.  It sounds like you had a window.  It is very easy to think you can drop sooner or make bigger drops when you feel good.  I do that myself quite often.  I also feel like I will never be able to get off the meds when feeling bad.   I guess I am just trying to say that everything you are feeling is normal.  Just try to accept you are in a wave right now, but it won't last forever, you will feel good again.  I know it's hard to be positive feeling so bad, but I do believe it helps.  I hope this wave ends for you very soon. 

Hazel

[grandmaD]

Thanks Hazel.  I am doing reasonably ok, better than the 3rd taper after a 6 month hold in the past.  Many symptoms have returned, mostly tiredness and head, but not as severe as they were before. 

 

This is a post I've been looking for now for ages, from a few years ago by NZ11.  I just love it and hope you guys will too:

 

 

On 11/9/2015 at 8:01 PM, nz11 said:

Later....ive had a think and here are some phases, symptoms and time frames to ponder.

 

Consider :

 

The curious phase; Symptom (S) thinking ‘Should I really still be taking this drug after 10 years use’ ‘Why do I feel so numb to life’ Lasts until next docs visit.

 

The enquiry phase; S, Asking doc questions like what the heck is this crap im swallowing anyway. Are you sure this is not addictive? Lasts for one consultation and about two weeks after.

 

The confused phase; S- Unhappy with doctor blitherings and a desire to start to do ‘googling’ 

 

The humiliation phase; S- after 10 mins of googling a sense of horror begins to descend and a tsunami of shear unbelief emerges…..timeframe -after 5 years I am still in it.

 

The urgency phase; S- A desire to tell the doctor ‘get me off this crap!!’ Lasts until next doctor visit and during his predictable kamakazi taper schedule.

 

The uninformed taper phase; S- On the doctors instructions you become drug free within a month often sooner.

 

The hypomanic phase; S- I am so glad I got that poison out of me  ….i feel much more alive. Timeframe about 1 week to 2 months.

 

The crash phase; S – a sense of wanting to die emerges. Occurs about 2-3 months once off the drug.

 

The akathisia phase; S- uncontrolled restlessness and uncontrolled psychological panic suicidality topped off with crying spells. 2-3 years.

 

The doc help me phase; S- a sudden urge to run to the doc / anyone in order to take away the suffering. 2 -4 years.

 

The terror/unimaginable/ I want to scream horror phase; S –PSSD, may last forever.

 

The un-patient me phase; S- A sudden realization sinks in that the doctor has no idea what he is doing, peddling or promoting. Comes on very quickly and may last for the rest of your life. It’s a major paradigm shifting phase. Can be triggered by experiencing full blown ssri withdrawal. Some are incapable of passing through this phase .

 

The im not taking anymore bullsh#t phase ; S- the growing of two antennae, ones called Blinkin and the others called Stupid or BS for short. Growth begins during the 10 mins of googling.

 

The uncontrollable anger phase; S- When the neighbours dog barks one time too many, one is overcome with a desire to nuke the neighbor, the neighbours house and pets. And that family member who criticizes me …oh boy you just started a cold war and the resurrection of the Berlin wall. 2 years maybe 3 years. A desire to say things that people can get put in jail for saying. If not careful collateral damage could last a life time.

 

The out of control manic/psychotic phase; S- A desire to persue self destructive actions and reckless spending and foolish impulsive decision making. 3 4 years...and anytime while on the drug.

 

The I cant take this anymore in the mornings phase; S- A desire to go to bed and never wake up again. 4 years

 

The windows and waves phase; S- windows and waves, years.

 

I am not going to make it phase; S- about 3-4 years.

 

I am outraged about what has happened to me  phase; S writing letters of complaints prolifically ….kicks in at about the 2 year stage…

 

The diarrhea and flatulence phase; S – diarrhea and flatulence , ongoing may last for years.

 

The insomnia phase; S - cant get a regular nights sleep, should resolve itself  usually takes  about 9 years

. 

The OCD phase; S – OCD; usually only realized with hindsight and insight. Maybe 5 years.

 

The chronic fatigue and muscle weakness phase; S - fatigue and weakness, Not sure how long it lasts but i hope it resolves soon cos at 5 years this phase truly sucks. 

 

The I found SA phase; S- Overwhelming thankfulness and relief one is not alone, also a sudden desire to welcome every newbie...with a flood of opinions, Can last a long time and may become  an addiction...after 5 years im still in it. Hoping to taper sometime soon.

 

oh yeah one more ...The i'm getting on with my life phase ; S- forgetting to check in to sa because i have a life to live  ...hopefully kicks in sooner rather than later.

 

There are heaps more but this is just a couple that came to mind

[Songbird]

I really think it was a window and probably because you've been tapering so slowly and carefully.  I think it's very good news and shows that our systems can recover.  Our brains always think however we feel in the moment is permanent - when we feel good we think it will last forever - when we feel bad we think it will last forever.  We have to try to remember that things change and how we feel in this moment is just a feeling and not a permanent state.  I think of it like clouds - when the clouds part and we see the sun it's wonderful, then the clouds cover the sun again, but the sun is still there, and eventually the clouds will part again.  I hope that doesn't sound too silly!

[grandmaD]

Lovely to hear from you Songbird.  Yes, that is so true, when you feel good you think you have "arrived" and it is all over!  Then it gets bad and you think it will last for the rest of your life!  I just saw your signature and how rapidly you are coming down, that is amazing.  I will pop over to your journal to see how you are.

 

I have just undergone a gastroscopy and colonoscopy due to a positive result from the National bowel test you get in the mail.  Got the all clear on cancer.

 

 

It was discovered I still have the inflammation in in the lower oesophagus and top of stomach I had several years ago.  He galled it haemorregenic gastritis.  This would explain my nausea, indigestion, full stomach and belly discomfort... and the blood in faeces. 

 

 

The interesting thing was that the doctor who did the procedure thought I must be taking aspirin, so I reckon it has to be the Paxil.  I also found a comparison between a/d’s on the gastro issue and Paxil rated the highest for gastro issues.  I also looked up gastritis and found that the number one cause is "certain drugs".

 

 

 

 

 

Stress can make it worse and eating certain foods makes it worse.  It helps to eat smaller meals more frequently. 

[grandmaD]

I am about to do another drop in a few days.  I was unable to do 6 weeks, so went for 8 weeks.  The biggest notable change has been in my head.  I feel like I am waking up after a bad nightmare!  Or it could be compared to ice melting slowly.  The world looks clearer, perhaps because my head feels more alert.  I remember to take my poison without two alarms and my husband reminding me.  I can communicate better and focus longer.

Much less red eyes!  It’s quite amazing to look in the mirror and see the whites of my eyes now and not red, pink or yellow!

 I am sure my brain is healing now, at long last.  I still am not good enough in the head to drive, however!  AND I GOT LOST TWICE IN ONE WEEK.  In all these years I have not gone out, shopping, etc. and if I did, it was for half an hour browse in an op shop from time to time.  I would usually lie in the car while hubby went shopping.  This week, I went to 3 or 4 shops during the morning looking for shoes.  The stress of that affected my head, with strong head vibrations, body vibrations and an increase in anxiety along with severe aching legs.  I was quite pleased, just the same, to be doing something normal like shopping for shoes!  After that we had a coffee in a café like normal people!!  It felt good to do.

However, perhaps the stress from all that caused it, but I couldn’t find where the car was parked and hubby had gone to get groceries and I had left my phone in the car!  !  I was convince the car was in the car park across the road, but after walking up and down 3 times, I gave up.  I went back to the entrance to where I thought he might come out and waited and he came out.  As it turned out, I had walked though a carpark, crossed 2 roads and another carpark and then another road, that I had no recollection of doing. 

A similar thing happened another day when I went out to the car park and the car was gone!  This time I was convinced someone had stolen it and I panicked and hurried back into the shop to get my husband.  This time, he had parked the car out on the street and walked up an alley, and not parked in the carpark.  Again, it was only about 15minutes later and I had absolutely no recollection of him parking on the street or of walking up the alley!  I sure hope this is not permanent!  It is weird in that I am remembering other things, but this very short, short term memory loss is pretty bad!

[Songbird]

Great that you're feeling so much better! 

 

I think memory problems are "normal" in w/d.  I've had stuff like that happen as well, well not exactly the same, but similar kinds of memory issues.

[LexAnger]

How wonderful that you could enjoy some time shopping!! 

brain paralysis has been with me in the past 2 yrs and still flirting around being 5 months off. That's how much harm these drugs can do to a  human mind. But I truly trust the brains ability to heal giving enough time.

 

Stay strong and have faith. Someday you will have your beautiful brain back!

 

Love and hugs,

Lex

[grandmaD]

Songbird, it's good to know others experience similar things.  I sure hope this improves with time and/or when we get off.

 

Lex, thanks for stopping by, considering you are still in a bad place, I appreciate your input.  the brain paraysis is absolutely debilitatng, it makes you feel like a complete invalid.  I had become so despondent and thought I would never change, however in the last 3 months, I have seen changes in my head for the better and those days are starting to increase more.  So this is encouraging.  Please continue to look after yourself and rest, as I have just discovered outside stressors exacerbate the nervous system A LOT!  So keep on resting as much as possible to give it maximum chance to recover. 

 

Interestingly enough, my faith continues to get stronger also.  There was a time my brain was obviously so dead I coulnd't even pray and i couldn't read.  Well, now I think about it, I couldn't even listen to soft gentle music!  This surprised me because I thought our spirit was separate to our brain, but obviously it needs our brain to co-operate!

[grandmaD]

I am coping much better with housework now and seem to get it done much quicker and with more ease.  I am thinking about cleaning the windows when I get the chance – that is, no head issues and good energy level.  I felt okay this morning, except or moderate head pressure, but I still do not learn easily as I knew I should not attempt to do the pruning!  But being encouraged with no bad headaches this week, and some energy, I did 30mins only to end up with a mod. headache, extreme fatigue and back on the couch for the rest oft he morning!  It is so hard when you finally think you can do SOMETHING to still have to curb your exertion!  the other good thing I ;notice about this sort of thing is that having "rested" all afternoon as well, that tomorrow morning I might see my energy return again, whereas in the past if I overdid it, I wouln't  recuperate for at least a week or more.

 

Energy levels are mostly back to normal baseline from 18months to 2 years ago; compared with fatigue 5-6 days a week that I was having back then. This has meant I have been able to garden, weed, prune and walk for 20-30mins a day some days.  I might still have tiredness or fatigue a few days a week, so I go back to include my morning rest on those days. 

 

The noticeable change with walking is no head issues (headache or pressure head) as a result which makes walking now a pleasurable experience rather than a chore. 

 

The backache has improved and hips have improved at present, but now with walking I have upper back ache at times!  Not sure what causes this as it isn't all the time ad sometimes I think it is what  have eaten. I used to have it a lot before I had my gall out and blamed the food I was eating.   

[Songbird]

The fatigue is very frustrating, I know!  There's so much that needs doing around here, but mostly I don't have the energy to do it, and when (very occasionally) I do have enough energy to really go for it, I pay for it with exhaustion for a few days afterwards.  I feel quite guilty resting when there's so much that really needs doing, and it make me wonder whether I really do have fatigue or whether I'm just lazy (I'm sure my husband thinks so).  But then it feels so amazing when an energetic day does appear!

 

Have you ever tried Bowen therapy?  It's very gentle and can be good for back issues.  I'm glad you are having some pleasurable walks!

[grandmaD]

Songbird, yes, it's so frustrating.  I am beginning to be less tired and have more energy and then try and do too much!  I am going to remember to pace myself, so that I give myself a day or so (better than the weeks it used to be!) to recover.  It means you can't plan things BUT I am used to that now! 

 

I don't think you are lazy at all!  I felt guilty all these years for having to rest, lie down, etc. but learning to tell myself that I am "being kind to myself".  I know it's not laziness, because I might feel fatigue one day but the next day feel like I can do things.  Laziness doesn't come and go like that! 

 

I can usually tell the minute I wake up what my day will be like, but I still haven't learnt if my head is bad and I am weak, just to take it easy!  Sometimes I remember and will just do a jig saw but other times if things haven't been done for weeks, I tend to push myself to do them, and then pay the price!  It sure is all a learning curve.  But I can see now how I used to be always on the go and doing, doing, doing and have learnt to just "sit for a bit" and enjoy it!

 

Yes, I have heard of Bowen therapy.  AT present my muscles are pretty good and that upper backache is weird, I went for a walk this morning and it wasn't there.  It was there last night, but I did eat Chinese for lunch and I do think it is related to fatty or spicey foods and I also suspect it is from nuts.  I haven't eaten nuts in donkeys years and am trying to introduce just 2 almonds a day!

 

How are you going today?

[grandmaD]

I am now down to 1/8^th tablet!!!  YAY!!!

I was hoping to do another 6 week taper, but outside stress factors prevented this, so have done another 8 week taper.

This taper saw rapid pulse come down for the first time in 2 years from being daily in the 100's and some 90's!  Big improvement!

The biggest shock in the past 3 months is the return of feelings – like anger, resentment, irritability, short tempter, impatience and so on!  All these 22 years and I thought I was a calm person!  I had no idea the drug dumbed down the brain and that it also numbs your emotions! 

Now it looks like I have to learn patience and self control all over again!  Or will those traits return and what I am experiencing is just the “neuro emotions”???

Now I am beginning to improve, it has really hit home how this poison affected my brain and emotions; it is criminal to do that to people, honestly!  Especially people like myself,f put on it for pain and not for depression or anxiety!  The sad part is my husband only knows the “me” on the poison!  He has lived with a robot all these years!   

[Songbird]

On 3/11/2018 at 1:40 PM, grandmaD said:

The biggest shock in the past 3 months is the return of feelings – like anger, resentment, irritability, short tempter, impatience and so on!  All these 22 years and I thought I was a calm person!  I had no idea the drug dumbed down the brain and that it also numbs your emotions! 

 

The same thing happened to me - I remember thinking I'd become a very calm person, not realising at the time that it was because the drug was making my brain a very quiet place!

 

On 3/11/2018 at 1:40 PM, grandmaD said:

Now it looks like I have to learn patience and self control all over again!  Or will those traits return and what I am experiencing is just the “neuro emotions”???

 

I think it is a bit of both - some of it is "neuro" emotion, and some of it is "normal" emotion.

[Athena]

Hi GrandmaD, Yes I relate very much, it is criminal to do this to people. I try to let go of that anger because I know it's not good for my body and I am suffering right now, but it is not an easy thing to do.

 

I am glad you are feeling better overall and that you started to see windows a few months ago. It gives hope to read that.

 

Good healing energies your way

 

Athena

[grandmaD]

Just a quick update.  Well, after telling another member my headaches have improved since I started tapering (because back then I would get up to 5 a week) I just had a constant headache for 6 days!  This was a huge shock.  It isn't unusual, so I'm sure its withdrawal, but it has been 8 months since the last time I had it go on for 6 days.  I have noticed these headaches also co-incide with the head banging sensation which had eased up in frequency and intensity, but this has also got so that its every day and more painful once again.  Along with the sore heads and 2 of those days I was bedridden as it was like a migraine and the 3rd day more like a tension headache with throbbing.

 

So this never gets any easier.  I have also noticed that with the headaches comes depression and that sense of hopelessness and despondency.  The throbbing was so painful I had to resort to Mercyndol very reluctantly as I had stopped taking that many months ago, but I guess as long as it is only now and then it is okay, but I am still not convinced that is even good, as it will upset the brain.  I didn't seem to have the same "knock out" effect as it used to give me,but it did ease the pain enough to get by and I was dopey for 2 days, which is also unusual as it used to wear off after 6 hours.

 

I am beginning to see how we start to blame anything and everything when we hit the wall so I began thinking it was the tomatoes, as we are picking nice fresh ones, so tasty and juice.  I will stop them anyway, and see how I go but it is just likely w/d since I dropped only a week ago.

 

Thinking it was tomatoes I took a Telfast (I believe this is the safest anti-histamine as it doesn't cross the brain barrier).

 

Whether it was the "kickback" from the Mercyndol or the Telfast, the anxiety went through the roof and depression is gone.  Insomnia for 4 hours and body vibrations high and head vibrations.   Today I still have the head banging, upon exertion.  I managed a 20min walk for the first time in a week and that was enjoyable.

[grandmaD]

I had a visit to the doc this morning to follow up the colonoscopy and gastroscopy.  I had a biopsy on the thing in my stomach and that is of no concern apparently.  He was worried about the bleeding from the inflammation in lower oesophagus and upper stomach and wanted to give me a "pill" for that, to stop the acid problem which he says is causing it.

 

Yes, they have a pill for everything.  I refused, because I am convinced it is the paxil (the surgeon thought I was on aspirin) so as long as I am taking that, it won't improve.  Stopping the tomatoes will probably help a bit.  Stress makes it worse also.  After this taper, I will start to grind my paxil bits and put it in a capsule, that should help it get through further, but I wonder if it will just cause inflammation further down in the stomach when the gelatine dissolves???

 

He also prescribed 2 different lots of those pills for acid in the past, and they gave me constant headaches for up to a week.  I couldn't remember that at the time, but I now recall that was the problem with them.  So instead, he has given me a script for something from the Chemist called Zantac - so if anyone knows anything about that drug, PLEASE LET ME KNOW IF IT IS SAFE OR NOT!

[LexAnger]

Hi gradmad,

 

I'm so sorry about your horrible experience with the anti histamine.  It sounds very much like my experience with magnesium. It will pass so don't stress out yourself too much about it. 

 

Zantac is a h2 receptor blocker, milder than poi for treating heartburn. I was on it many year before and during my taper. When I suddenly stopped zantac in 2014, I experienced severe wd of sari symptoms, and due to that I updose Lexpro. That was when all my drug reaction problems started.

 

I remember reading an article about the interaction between poi and sari, saying that ppi  can increase sari effect by up to 50%. That explained my wd sxs from stopping zantac. 

 

I hope you can find some other forms of relief from the heartburn if all possible. 

 

You are in my prayer.

Lex 

 

 

[grandmaD]

Thanks LA for your input, it's good to hear of others experience.  I remember when things went so haywire for you back then!

How are you now?  Are you still  mostly bedridden?  I have not been well enough to keep up with everyone, but you are never forgotten, and I do read your posts and continue to pray for you.

 

I really don't think it was the Telfast.  I was taking it quite a bit for a while on and off and if anything, I slept better those nights and it's not a sedative type one, but then there were the odd nights I still had insomnia, so like everything connected to w/d nothing makes sense!  I also had a severe reaction to taking too many of the sedative type anti-histamines along with a lot of anti-inflammatories, similar to you, but I think it only lasted a week and that wass probably helped by the fact I was holding at that time because I was having extreme spasms.

 

If anything, I do think the Mercyndol plays around with the brain as it has a sedative/calmative in it with the codeine.  I also reviewed my notes and it has been 9 months since I last took that and it was only 1/4 tablet but I had written that the next day the anxiety was EXTREME!

 

How is your indigestion now you are off the Zantac?  You say it affects the  H2 receptor - isn't that the histamine receptor?  Why would an antacid need to affect histamine??

 

what do you mean by "sari"?  Are you saying that Zantac increases the affect of the a/d?  In the same way if you are on a benzo and then take codeine, it can increase the affect of a benzo.
 

[grandmaD]

The headaches, migraines and throbbing went away yesterday but I had the head banging sensation ALL DAY.  I usually get it 2-4 a day, but not continually all day.  It was not severe, but still painful.  Then I slept the best last night in a long, long time, so go figure!  I think I was just so exhuasted and fatigued from it all.

 

Today, my head is dull, and painful to touch in the right hand side area where it all happens, like it is bruised.  This is not uncommon either, but what is uncommon is the fact that it is now 7 days in a row with headaches, etc.

[grandmaD]

To change signatgure do you go to profile and then settings?  The settings bar is greyed out and nothing happens when I click on it.

[grandmaD]

I have been beside myself with a 10 day headache!  This has never happened before.  It is week 2 of a drop.  I checked my tablets weight and that was ok.  I thought I had it bad when I used to get them for 5 days straight and on occasions 6 days and once in a while 7 days but never this long! I presume it is w/d having done a drop 2 weeks ago.

 

Of course I went into overdrive wondering what it could be.  In week 6 of the previous drop I had a 4 day headache and I put it down to eating our fresh strawberries, so stopped that.  This time I had been eating a lot of tomatoes so have stopped that.  I began to wonder if it was a dozen other things… and realized how much fear and panic enters in at these times.   

 

I coped okay at first, when it started out as the usual “head banging sensation,” I have had all along, except it just got worse again in intensity and frequency.  Instead of maybe 2-4 times a day, it was constant banging all day.

 

Then the head banging stopped and turned into a right sided headache.  My average weekly headache is 2, so I’m used to that and I went to bed and rested (I’m such a good girl, did the right thing, surely I will be rewarded!!)  However it got worse, turning into a migraine! 

 

A 3 day migraine for me each drop was not uncommon either, but these had eased up and almost went away, the last being just one day in January.   Then the migraine turned into a tension headache with severe painful throbbing.

 

Then it settled down into a sort of “permanent right sided headache” that was mild to moderate depending on what exertion (like just watering made it worse – standing there holding a hose for 30mins.

 

I read the thread on headaches and was interested to see some people believe histamine is a problem.  It seems to make sense, since the paxil affects the histamine receptors.  Is there really anything in this?  The diet seems to extreme, however for me as it eliminates everything I eat!  I have decided, however to continue to avoid strawberries, tomatoes and gluten for the time being.

[Songbird]

Tomatoes are a nightshade plant - are you possibly sensitive to nightshades?  They have been known to trigger migraines in some people.

[manymoretodays]

On 3/19/2018 at 6:46 PM, grandmaD said:

To change signatgure do you go to profile and then settings?  The settings bar is greyed out and nothing happens when I click on it.

 

Hi grandmaD,

If you go below the greyed out bar you will see "Account Settings".  That will take you to your signature so you can update.

 

It looks like you have been exploring doing some dietary adjustments, which is good.  You may find you have to switch on up changes in diet, or other, as you continue on your W/D journey.  There are some recent posts about histamine on JungleChicken's intro/journal from freespirit recently, and you can always just type on in the subject you are interested in.....into your browser followed by survivingantidepressants.org.  I think there is something to it.........the histamine changes.  Always good to have something new to try, to slowly alleviate the worst of the W/D.  The headaches.......sure, could be related as well.  Of course they are right there on Joseph Glenmullen's W/D checklist too. 

 

Good to do what you can, when you can.  Keep it simple too   Some simple food reductions are great!!!

 

I keep a simple list of both Nightshades and Oxalates, in my kitchen and just use occasionally or in moderation, mostly in moderation.  You can just do a search and find out what foods are what as far as the N and O's go.  I found some lists with ratings even........higher to lower.  And I too.......realllllllllllllly.......that's really....... have to attend to diet.......MOST especially when life throws some of those tough things my way.   And an occasional ibuprofen.  That's about it for me now.  Frequent feeds help too.......every 3 to 4 hours throughout the day........no big gaps between eating up until about 7 pm.  Oftentimes whatever ........could be W/D......... or sensitivity........ I am having lets up in intensity......... in a couple of hours this way.

 

You can find more on Zantac/ranitidine here:

http://survivingantidepressants.org/topic/4361-tips-for-tapering-off-stomach-acid-blockers-or-ppis-e

Good that your colon and gastric tests went well.  That's a yay!!!

 

grandmaD hugs......(((((())))))) and L, P, H/IR, and G,.

mmt

 

[grandmaD]

On 3/23/2018 at 6:10 PM, Songbird said:

Tomatoes are a nightshade plant - are you possibly sensitive to nightshades?  They have been known to trigger migraines in some people.

I don't know.  So are potatoes and I don't think they are a problem.  However, like you said, I think when the system is overloaded, it doesn't take much of something to tip it over the edge and not be able to tolerate it.  Actually, I stopped the tomatoes (and strawberries) and gluten, but the permanent right side head ache is back again along with shooting pain in my head and a sore head.  I think stress is adding to the concoction.

[grandmaD]

Thanks manymoredays for your thoughts and input.  I am watching diet (mostly) and trying to keep to one I was put on before I had my gall out called a "fodmap" (I think) diet and it did seem to help.  Your suggestion of more smaller meals does help also.  I try and eat at 5pm at the latest, but sometimes ends up being 6pm and just a light meal because of the indigestion and because I go to bed at 7.30pm.

 

I intend to look more into the histamine diet but just not had the opportunity as yet trying to cope with other things.

 

 

[Songbird]

It can be hard to figure out what causes weird stuff to happen.  I had my own little mystery recently, still don't know the cause, but it went away.  It must be frustrating when something is ongoing and you can't find a solution.  I do think stress can be a very important factor in the mix, so if there is anything you can do to alleviate it or soothe your system, it might be worth a try.  I hope you feel better soon.

[grandmaD]

Manymoredays, thanks for the Zantac link.  Haven't looked it up yet but will.  Have not got script filled as I really don't think I want to take it.

 

Songbird, I believe you are right there, it is stress related.  I am trying now to concentrate on soothing my system, resting and doing more of my exercises.  I find the deep breathing does help.

[grandmaD]

Latest update

The headache has returned to the right side of my head seemingly “permanent” just sometimes mild, moderate to bad.  Also the head banging sensation got worse and more frequent again along with pressure heads.  Then the adrenalin surges returned, rising from my legs up to my head causing me to feel dizzy, hot and faint. 

 

Now I am experiencing once again the “prickles” on my back and in my head along with a sharp shooting pain like a needle being inserted into my scalp several times a day.  I think these jabs and pricks must be electrical, perhaps a type of zap, not sure.  Then during the night I woke with the adrenalin surges over and over, followed by a tension headache.  It dawned on me then that it is the the cortisol spikes, causing the headaches!

 

This sent me back to the drawing board.  I had already re-weighed my tablets and they were right.  What I discovered when I did my signature update yesterday was that there was a period there when I crashed as a result of the generic switch that I had slowed down to a 1.25% taper. 

 

After that 6 month hold and I started up again, I went back to my usual drops, having forgotten I had slowed down.  That meant these last 3 drops have been more like a 3% or 4% drop, rather than my previous 2.5% taper or the most recent 1.25% taper!  I think this could explain why I am so bad again now.

 

 

I am only a few weeks into this drop so I thought it would be safe to go back up to a 2.5% drop.  I hope that is ok, and not going to be an issue with yet another change???  What do others think?  I am worried that I should have stayed at the 3-4% and not made another change and having second thoughts!!!

 

I think it has taken these 3 drops for it to “catch up to me” and cause these recent problems.  Which probably means it will take some time now again to stabilize yet again.

 

 

[Songbird]

I think it will be fine, and with some time you will stabilise again and be ready to continue your slow and sensible taper.  Look at how far you've come - from 20mg down to 2.7mg!  Also, I like to think it is better to be tapering and putting only small amounts of the chemical in my body than taking a full dose of it each day. 

 

I hope things settle down for you very soon.

[grandmaD]

Thank you Songbird for your messages and help.  I must apologise to anyone else reading my last posts that were confusing (especially since I forgot to post it in the first place) and add that when I talked about tablet dose, I meant the weight on the scales amount.  We have it sorted out now, so waiting out till stabilize.   Yes, if necessary to hold longer than 8 weeks.

 

This week saw a huge improvement in adrenalin surges, just slightly dizzy at times upon exertion.  Prickles are gone with itchies instead.  The sharp shooting needle pain in scalp went away this week but re-appeared in my lower back and butt.  The leg and foot pain are both still very painful and excruciating at night making sleep impossible.  The leg and foot pain (I am sure this is nerve related) is still very painful and excruciating at night when I want to try and sleep.

 

Despite the improvement in the adrenalin surges, it has been another bad week, making 5 weeks in a row with 1 good day.  Heaps worse this week were the head issues, with a pressure head every day and 3 days headaches.  The head banging sensation eased up to only a few times a day and not as painful.  Less sore heads also along with less headaches (it looks like the sore heads are related to headaches.)

 

This week saw several days of feeling low, heavy and lethargic.  Also very exhausted with a few days of fatigue.  I am beginning to notice these particular symptoms all come like a “family” with the headaches. 

 

A few other symptoms, like the inner tremor thing and feeling weak and shaky returned this week along with sneezing and phlegm (sinus?)  These seem to come and go. 

 

Other daily symptoms like the anxiety, palpitations, back and hip aches, breathlessness and insomnia are all back to the “normal abnormal”.