grandmaD: turtle here

[grandmaD]

grandmaD -

 

Thank you for sharing the insight that you have learned.  Your comment...

 

 "I would have to say in a nutshell that not being prepared to put up with the agony is one of our biggest issues and the other one is a lack of patience and endurance." 

 

..really hits home.  It is tiring dealing with all the different withdrawal symptoms that are thrown at you.  I find that I can manage for a little while and then I break down.   

 

How do you deal with the lack of patience and endurance? 

You have had my brain going round and round wondering how I deal with it!  I think there are many ways now I realise - I just go another jig saw puzzle out to do, so that is another way that helps.  Like you, there are times I hit rock bottom and I asked myself how I cope then?  it comes back to that offer of Endep from the doctor - get some relief or suffer?  I realised at this point it is a CHOICE to suffer and be patient and keep persevering. 

[grandmaD]

To be quite honest, the last 4 months have been horrendous.  There are times when your patience does run dry and you get impatient, fed up and frustrated!  I think the one thing that helped me was Alto's suggestion to hold, which I had been considering anyway, so that just confirmed it - however I was so reluctant, considering the length of time this is taking and knowing it will take longer. 

 

I think I was hopeful that with the hold I would see some improvement, but when that didn't happen and in fact, I continued to go down, I really thought this was killing me and many a night I didn't expect to wake up next day.  It wasn't so much the regular w/d symptoms, I think I have got used to them now, but I know I felt the headaches, head pressure and insomnia the most.  It was a new symptom which hit me of fatigue.  I have had days of tiredness and lethargy, but not such extreme fatigue, where everything was a huge effort - just to get off a chair, for example.  My muscles ached and were sore and my joints were aching and painful and I felt vulnerable, like I might break a bone, pull a muscle or ligament.  My heart was like jelly, moving and pumping hard as if it was under water, trying hard to work.  It was all quite frightening.  I have never had the fatigue and muscle/joint issues last for months and months on end like this before.  At the beginning of my taper it was weeks but it had improved to be just days, so it was quite a shock.

 

The last few days I have felt the muscles begin to lose so much aching and pain and much more tolerable.  Joint ache is much better last 2 days.  My walk today was more tolerable than recently.  I realised today that what it felt like was that I was only dragging 1 or 2 ball and chains and not a whole heap of them.  I feel like (and hope) my energy might be returning.  My feet were painful today and feel like cramps, so perhaps that is what was going on in my leg muscles.  Just these little things make a big difference in my attitude too, I notice as I had become very despondent due to the fact I just kept getting worse after the last few drops and also the 8 weeks of this hold.

 

By the way, anyone or Mods know why you get worse after/during a hold?  Has anyone else experienced that?

[brassmonkey]

Hi GrandamaD-- And in spite of feeling horrible the last four months you've taken a major trip lasting several weeks, get out for walks, do some yard work and a lot more. Good on ya!!!!!

 

(((((((((((((((((HUGS)))))))))))))

 

Brass

[grandmaD]

Thanks for the reminder Brass!  And I am doing yet another jig saw!

[AliG]

I realised at this point it is a CHOICE to suffer and be patient and keep persevering.

 

You seem to be looking to the long term picture and sometimes that takes a little pain. I think if you " get it " and realize it's a choice it becomes so much easier.

 

I hope you don't give in to the short term fix of a drug. Endep is just another A/D and is ultimately dangerous. It was one of the last anti - depressants (there weren't many left ) recommended to me. Everyone thought I should go on it as I was a " lost cause".  I had a long history with the A/D's , but by that stage I was fed up and started looking for answers.That lead me here.

 

I hope you stay on course and say No.

Ali

[grandmaD]

http://survivingantidepressants.org/index.php?/topic/505-antihistamines-and-what-to-use-for-allergy-relief/

 

Mods is there evidence that antihistamines dampen down w/d symptoms as I read in some of the posts in the above thread?

 

check out no. 3 post on this page! 

[scallywag]

Histamine is one of the many signal chemicals in the CNS (central nervous system); it triggers an immune system reaction and symptoms such as runny nose, watery puffy eyes, hives, etc.  Adding anti-histamines *can* be further destabilizing to a person who's CNS is already destabilized by withdrawal.

[grandmaD]

I realised at this point it is a CHOICE to suffer and be patient and keep persevering.

 

You seem to be looking to the long term picture and sometimes that takes a little pain. I think if you " get it " and realize it's a choice it becomes so much easier.

 

I hope you don't give in to the short term fix of a drug. Endep is just another A/D and is ultimately dangerous. It was one of the last anti - depressants (there weren't many left ) recommended to me. Everyone thought I should go on it as I was a " lost cause".  I had a long history with the A/D's , but by that stage I was fed up and started looking for answers.That lead me here.

 

I hope you stay on course and say No.

Ali

Thanks Ali for the encouragement!  When you are feeling crap and not thinking straight, it is easy to give up and give in.  This decision is also a choice and I guess it's one I made very early on because I was so angry that I had been put on a psycho drug for pain and left on it for donkeys years resulting in the dependancy.  My offence at all that made me quite determined to get off it and any other drugs. 

 

It has been so long now and has worn me down and I am not coping very well and that has made this suggestion very tempting and so it is only now the result of people around me encouraging me to stay the course, so I am grateful for my good friends here and for this site.  In my mind I know that adding another a/d is only going to confuse the brain more, so I have to stick it out, but it isn't easy.

[grandmaD]

Histamine is one of the many signal chemicals in the CNS (central nervous system); it triggers an immune system reaction and symptoms such as runny nose, watery puffy eyes, hives, etc.  Adding anti-histamines *can* be further destabilizing to a person who's CNS is already destabilized by withdrawal.

I have done a search on anti-histamines and found a good link on this site.  I was VERY SURPRISED to read that David Healy says that adding anti-histamines is like adding more Paxil!  Goodness me!  All this is just incredible.  it says they work on the same receptors as Paxil.

 

As for me, I think I mentioned before that I started taking them despite not having any symptoms apart from pressure heads and headaches, which could be w/d as I have had both symptoms  all along.  Both those issues improved after a few days and since starting the anti-histamines (Telfast) I have started sneezing and have a runny nose, so that is crazy!!  I took it for 5 days but decided today to stop and see what happens. 

 

Can you give me the link for drug interactions please so I can look up Paxil and Telfast?

[grandmaD]

This is a good link talking about benzo w/d but is the same for a/d w/d and how it affects how brains and ultimately the nervous system.

 

http://survivingantidepressants.org/index.php?/topic/10914-what-is-happening-in-your-brain/

[scallywag]

Drugs-dot-com Drugs Interactions Checker.

[grandmaD]

Thanks for the link scallywag.  It didn't recognise Telfast, so had to search a bit more and found out it is called fexofenadine or allegra in the US.  Anyway from what I did, it seems it is okay.  It said it acts on the H1 receptor if I remember right, so do you know what that is?

 

I decided to stop taking it anyway, as I didn't have any symptoms except the headaches and head pressure, which did ease up on it, but could also be w/d.  Then on it I was sneezing, etc, so a bit weird.  I'll see how I go.

 

The interesting thing I found is that Paxil interacts with 400 OTHER DRUGS!!!!  I checked some of the other things I take and for interest sake also the Endep and it interacts with Endep.  I gather that means you shouldn't take BOTH at the same time, but that is what Dr. was suggesting.  Unless the small dose of paxil is okay with a small dose of Endep??

[scallywag]

In most cases, the risk of interactions decreases with dose, in the same way that adverse effects ("side" effects) decrease with dose.

 

In general, a pharmacist has a much better understanding about drug interactions than a doctor or me. It's probably worth a call or visit to the pharmacy you use to get your questions answered.

[LexAnger]

Oh dear, I'm so sorry that it just doesn't want to give you a break!

It's so heartbreaking with you enduring all the insane pains and sickness for that long, things don't get any better, and even worse, they got harder and more intense.

 

You know I ways have problems holding long ever since the drug reaction to dose incraese, so it's not uncommon to me in my case. But based on the common belief, if you don't have allergy reaction to the drug, you should get better with long hold. I really hope your situation is nothing like mine stuck in between the two evils.

 

One thing can be comfort though, that I'm feeling your pain and struggle every minute when I go through each myself, and you are in my thoughts! Not only that, having you in my thoughts keeps going too.

 

Let's hold hands GrandmaD in this darkest and hardest time.

 

Wish I can give you a long, big, snuggle hug in persona!

 

Lex

[grandmaD]

I am pleased to be able to say that the last 2 days the pressure heads have eased up, along with muscle weakness, aches and pains in legs, knees, hips and ankles improved.  Also the fatigue has improved and I have some energy back!

 

I can tell you though, that I had got quite desperate after months and months of that, thinking it would never end.  It is just amazing that it can change in just one day like that.  you would think i would get used to this after 5 or more years, but I think it was just that I can't recall going for months and months like it (but probably did, and just can't remember).

 

Lex,  you are such a gem and a support and I am so sorry you are in a bad place and hope it brightens up faster than the months mine took.  Yes, we are between two evils.  I had another friend suggest I stop the hold, since it wasn't helping after 8 weeks, but now the last 2 days I think I will keep holding.  In your case much difficulty having an allergy to the stupid drug and all!  May God bless you and strengthen you, lovely lady x

[LexAnger]

OMG, that's so wonderful!! I'm in tears, joyful tears.

I'm so so happy you can relax and enjoy some good days without those horrible painful distress!

 

Live it to the fullest, GrandmaD!!! Go singing, dancing, getting out for the blue sky, feeling the nice breeze and seeing the moon!! Do whatever you can to make it a memorable moment.

 

Your dearest words made me want to cry, but I couldn't ( the drug took away my ability of crying), so I'm in tears again, for having such a dear person in my most difficult times. God bless you, dear GrandmaD!

 

I will post a good update to my thread soon

 

Lots Love and hugs!

Lex

[brassmonkey]

One day to the next, you never can tell how it's going to be.  I'm so glad you're catching a break GrandmaD.

 

(((((((((((((((HUGS)))))))))))

 

Brass

[scallywag]

Is it possible that I heard your sigh of relief on the other side of the world, grandmaD? 'Cause I felt something reading your post. I hope this continues a good long while for you.

[ladybug]

That is great news, Gran!! Long may this window stay open.

[O2bhappy]

grandmaD -

 

I am so happy to hear that you are feeling better.  I hope you continue to feel better.  Feeling sick for so long can be very discouraging. I pray that you continue to feel better!!!

[grandmaD]

How wonderful you all are and so supportive, may God bless each and everyone and give you all success and peace.  I am so grateful and thankful for you all.

 

I am going to step back for a while as I am not coping too well.  In one day I was passing blood from bowels, head my son is cutting himself again and suicidal and a good friend diagnosed with cancer with 6 months.  Just too much!

 

Since then I have had a stool test result is good but 2 more episodes so have had a blood test and need either a scan or colonoscopy... more running to and fro ...

 

The issue with son has been on-going on a daily basis.  His wife left him again causing this and wants us to go and get him and bring him here .... impossible the way I am, not healthy, not strong and he is a mess still ... today he told me to "f off" so I will just dip out and he is on his own .... but of course there is still the emotional burden.  He won't accept help or recognise he has a problem.

 

As for w/d that intense fatigue has gone and yes, that is a relief. I am very tired but that is the emotional response to all the crap. These other issues have caused head issues, but I guess that is to be expected along with high anxiety and insomnia and just taken sleeping tabs for 3 days but will stop them now.  Have got out in the garden for a little bit, but it still affects my head (pressure or headaches) afterwards so have to have "in-between" days off.

 

Another good report is the intense pain and sore muscles resulting in weakness in legs, esp. and I have done 2 walks now from 15 to 20mins without aching and pain and feeling like I've got a few balls and chains around my legs.  I'm still slow, but at least I can enjoy the walk and not have to force myself to go.

 

I am now in week 11 of holding at 3.5mg and I think it has been a good thing I did this hold with all this happening.

 

I will still pray for you guys that you keep at it and not give up!  Keep turtling on turtles!

[brassmonkey]

Hi GrandmaD-- If it weren't for the situational stuff it sounds like things are improving a lot, good on ya. Keep up on the walks and garden, best medicine in the world. 

 

With all the stress lately I'm not surprised to hear about the blood showing up.  Do get the tests just to put your mind at rest, as they will more than likely come back normal.

 

I'm sorry to hear about your son.  Cutting is a very hard one to break out of, I know several people who do.  They manage to stop for a while and then are right back at it for any number of reasons.  A mother can only do so much to help.  Like quitting alcohol, the person has to make the decision on their own and stick to it. 

 

Don't step back too far.  You have a lot of good support here, people who really care how you're doing.

 

(((((((((((((((((((((((((((((((((HUGS))))))))))))))))))))))))))))))

[LexAnger]

Tom said it all so well, GrandmaD.

 

Its a great sign you are stabilizing with the long hold! I re-read the Rhi's thread 'slowness of slow taper' one more time just yesterday and decided to fall back to that schema again (started with it then changed to fast taper this year due to severe reaction, then got a huge hit lately at 1.2mg). So I will be at your company turtling.

 

I hope to hear you whenever you get a chance, just a short note letting us know you are doing ok and getting better.

take good care of yourself and be kind to yourself, while you are

 

love and hugs,

lex

[grandmaD]

Thanks guys and Brass - I never known anyone all my life to cut themselves and didn't know is hard to stop!  Unbelievable, really.  His wife said he will go for a while and be okay and then bingo, backwards again and she has had enough after 10 years.  She leaves him and then he starts drinking again (while on psycho drugs and not supposed to).  Went missing a few days ago and turned up at her mums and collapsed.  Police took him to hospital, but only kept him in 24 hours. 

 

Lex,it is so horrible, what this drug can do.  I didn't know you had been tapering for 6-7 years???  What sort of taper had you been doing all that time?  Because you have been going so fast, don't forget it can pile up, sort of accumulate and get real bad real fast and take a long time to stabilise, so i think if you can do it, holding a bit longer might be the answer.

[grandmaD]

I won't step back too far!  Just for a while, today I am doing okay.  My son told me to "f-off" so that's what I'm doing and it is helping me not having contact with him to and fro each day.

 

I compared the 2014 and 2015 stabilisings and it took at least 20 weeks to see significant improvement for 6 symptoms (while 6 got worse and 3 stayed the same).  By week 24 I was a lot better/stable.  Interestingly those 6 symptoms that got worse never did improve but did improve at the next drop.  This hold is having the exact same pattern, so at least I know I am on track!

 

  I am starting to feel better in my head and strength returning so I am hopeful I will be in a much better place by Christmas.

[LexAnger]

Oh, I am so sorry about your son! I now remember you mentioned before that he is on the poison too. My god, it sounds horrible how much the drug messed his life up. And now you get the extra load handling the situation. Total crime!

 

I hope you can still focus on yourself. You can't help others unless you are ok. I know it's so hard as I know how all moms feel, but just try.

 

Both of you will be in my prayer.

Lex

[LexAnger]

Oh to answer your question about my tapering the past years.

I started tapering in 2013, quick down from 10 to 2.5mg within just a few months, some symptoms but all manageable. The bad is I increased dose to 4.5mg in 2014 due to WD symptoms caused by stopping PPI, so I had to start from 4.5 since then super slow tapering down to 3.2mg in one year per my plan to get to zero in 7 yrs, but had to taper fast since then due to an accidental one day updose of 4.2mg instead of 3.2mg.

 

So my total tapering time is 4 yrs so far, if not for the updose in 2014, then the 4.2mg accident, things would be much much better and I probably should be already out of the woods.

 

But giving the unknown every where in every possible ways, its hard to avoid those hiccups over these many years. All lessons were learned the hard way.

[O2bhappy]

grandmaD-

 

I wanted to let you know that you are in my thought and prayers.  I am so sorry that you are going through such a difficult time right now.  It is one thing to deal with all the health issues of tapering your medications but then to add everything going on in your personal life is awful.  I know by reading all your post that you are a very strong person and an inspiration to me.  When I am having a tough time I think about everything you are going through to get off your medicine.  I know if you can do it, then so can I. 

 

Hang in there grandmaD!

[grandmaD]

Oh, I am so sorry about your son! I now remember you mentioned before that he is on the poison too. My god, it sounds horrible how much the drug messed his life up. And now you get the extra load handling the situation. Total crime!

Drugs, plural!  They had him on epilepsy drug, a/d drug, sleeping tabs, diabetes tab, and not sure, but were saying he is now bi-polar (load of crap).  He has got worse and worse over time, so Lex, I believe these drugs have messed him up NO END.

I hope you can still focus on yourself. You can't help others unless you are ok. I know it's so hard as I know how all moms feel, but just try.

I hear what you are saying, bless you dear Lex, you are so kind.  My Dr. also told me "only the healthy can help the sick" and I know I am not well.  But a mother's love is so strong.  I just want to kiss it and make it better and I know I can't.  It is very frustrating.

Both of you will be in my prayer.

Thank you SO MUCH.  "Some prayer - some power; more prayer - more power; much prayer - much power!"

Lex

[grandmaD]

grandmaD-

I wanted to let you know that you are in my thought and prayers.

THANK YOU SO MUCH!  i cannot tell you how much I appreciate your prayers as I have not been able to attend church for 5 years due to w/d.

  I am so sorry that you are going through such a difficult time right now.  It is one thing to deal with all the health issues of tapering your medications but then to add everything going on in your personal life is awful. 

You can say that again!  I am so glad I have been holding for all this time, as I am sure I would be a complete mess otherwise.  It is not easy.

I know by reading all your post that you are a very strong person and an inspiration to me.  When I am having a tough time I think about everything you are going through to get off your medicine.  I know if you can do it, then so can I. 

I appreciate your encouragement, this helps me to hang in and keep going and hope you will do the same!

Hang in there grandmaD!

[grandmaD]

Things have got increasingly worse with my son - from cutting himself to drinking - even smoking apparently and never does this in his life.  Drinking is a no-no on all the drugs he on.  Not even sure he is taking medication regularly or not.  Wife has left.  Issued an AVO on him as he keeps turning up her mothers, where she is staying wanting her back, bawling and 2 days ago bashed his head on the brick wall until it bled ... it is too much for any of us to cope with.  The mental health system here is only for those who cannot dress or feed themselves, otherwise there is NOTHING.  Police take him to hospital and they keep him 24 hours and let him out again.  Wife has ordered him out of the house on 28th and if not Police will forcibly remove him.  He is not answering my SMS's or phone calls.

 

I am trying very hard to look after myself first, but feel compelled to go up there (a 6 hour trip).  I know there is nothing I can do because he has told everyone to f-off and refused all help.  At the very least I can try and support his wife and her mother.  Hubby is not keen to go,being a man, not really into a long trip just to hold people's hands, I understand that is a probably a girl thing.  He is happy to go if we can be of practical help to my son but he just might slam the door on us and tell us get lost.

 

Just to let you all know I appreciate your help, and find strength in your encouragement and prayers and to let you know why I'm not on here for a while.  I am coping reasonably okay, have my moments of course and only 3 hours sleep last night, but just trying to do the best I can under these terrifying circumstances because all of us on tenterhooks when the phone rings - is this "the call"??  If you know what I mean - don't want to go there .....  just so very, very sad.....

[LexAnger]

Oh dear, God has mercy to all the wounded soul! None of us deserves this insane tourture! Please take away all the pain from our body and soul! And bring peace and love back to our families.

 

Thank God you are coping ok yourself, GrandmaD! Your strength is sourced from the great love you have for your son, which has no limit. Even he says so, he needs you and will get comfort from his mom.

 

Try to take care of yourself whenever possible.

 

Long hugs,

Lex

[grandmaD]

Bless you so much Lex!  Yes, so many wounded souls out there not just like us lot, but my son's lot also with broken marriages.  We saw a man in the caravan next to us drop his kids off and drive off crying... pain is everywhere.

 

We have arrived home safely.  It was not easy, very traumatic for all of us, super stressed out as a result but I got to see with regards to my symptoms.  I discovered extra stress causes sore heads, headaches, anxiety, insomnia and rapid pulse.  I had to resort to the Serapax but just for 2 days.  We only intended staying 2 days but due to extra drama and my grandson begging me to help his dad and stay .... very reluctantly we did. 

 

That day was worse, with 2 hours sitting in one office, hours at another, financial help, housing, cop shop, and on and on.  My son very raw as only 4 days since being homeless but I was proud as he coped mostly pretty well and when he broke down sobbing, was normal for anyone.  I just have to hope he will get permanent accommodation soon, a job and can cope by himself.

 

I got one nice surprise I can learn from though - I am super paranoid now about getting addicted to the sleeping tabs and knew that I really needed one last night after that extremely stressful day, but reluctantly decided to put up with the insomnia - and surprise, surprise I slept really well and only woke twice (not 5 times) and woke at 6.45am (and not5am or 6am)!!!   AMAZING!  I have not slept like that for A LONG, LONG TIME but it shows that I can!!!!!  I hope it happens more and more!  Especially now we are back home and relaxed in normal routine.

[O2bhappy]

grandmaD-

 

I am so sorry to hear that you went through such a difficult time with your son.  I am sure that was tremendously stressful.  Hopefully now that you are home you can get some rest.  I am glad to hear that you were able to sleep without your sleeping medication.  It is awful not sleeping, or having interrupted sleep.  I know we need sleep to heal, but it is hard in withdrawal.

 

I wish one day we would wake up and magically feel better.  Life is hard enough without dealing with withdrawal. Some days I just cry because I am so upset from feeling sick everyday.  I have a hard time enjoying myself when I am not feeling well.  I know people that can but I am not one of them.  It is just easier to enjoy things when you feel good.  Sorry to be negative right now, just not feeling well.

 

I will continue to pray for you and your family. 

[grandmaD]

O2Bhappy - Still stressed and not much sleep last night.  The lack of sleep makes other symptoms worse also. Not out of the woods yet... that is the hard part .. he still wants to go back to her and "back home" and cannot accept the situation.  So the worry is how he will handle it.  I went to dr. today to organise a counsellor for myself and then when I rang she is not taking any new clients!

 

I hope like you that one day we will wake up and it will be all over.  You just never get used to this w/d life.  It is comforting to know that others are praying because there are times it is difficult to pray for myself.  Bless you and you are in my prayers also. 

[grandmaD]

Scallywag, is there a connection between allergy/histamine in the body causing cortisol to spike causing anxiety and palpitations?  I tried to search but found nothing and thought you may know of a link about it.

 

Also a link with regards to emotions beginning to heal and what to expect.  I am wondering if this is what is happening with me with all the added stress from my son causing my anxiety and insomnia to go through the roof?  It is a shock to realise that the drug has caused emotions to be numbed and I wonder do I have to learn all over again to deal with my emotions?