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grandmaD

Hi all, thanks for you input!  Songbird I've been having grated raw ginger in my tea for donkeys years now.  I started it because of upset stomach but doesn't seem to help.  I also tried Aloe Vera juice in 2013 when I was really bad and it didn't help either.  I might try the Aloe Vera again yet if other things don't work!

 

Thanks Lex for the link, that was VERY  interesting.  I was surprised to see that the carb soda is not to be taken regularly and has the same problem as ppi's causing more acid in the long run!  For the time being I will only take the Zantac when I am very, very bad.   I'll use the carb soda first though, when I'm bad.  I took Zantac for 2 days in a row and it didn't relieve the pain and aching, anyway.

 

In the meantime I am back to using slipper elm, eating only veges, porridge and vege soup.  I had 1 small chop for the first time and so far am back to how I was before with the low grade belly discomfit.  I did notice the pain got worse when I took a "Mintec" for the pain and I just got worse (it is just peppermint in a capsule).  I also got worse when I ate a take away meal that I knew wouldn't agree with me. 

 

so I'm back to basics again thing as much as possible to stick to IBS diet.  I am also going to stop yoghurt for a while and see what happens, just wondering if I have too much bacteria causing candida??

 

I've spoken to another SA member who as exact same problem as me with the bleeding inflammatiion.  She is 3 years now CT from Zoloft.  She is going to try a honey called "Manuka honey" which is supposed to be good for this sort of thing, so I'll see how she goes with that.  It's just never ending, isn't it???!!!.......

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Cherry47

Active Manuka honey has natural antibiotics that coat, protect and soothe the outer lining of the esophagus.  Manukahoneyusa.com states that results are evident within 3 to 6 days and recommends to take 1 tsp 3 to 4 times per day on a small square inch-sized piece of bread, toast, bagel, slice of apple or banana, 20 to 30 minutes before meals.  Do not consume honey alone, because it will dissolve into the bloodstream too quickly and not reach the stomach.”

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grandmaD

Has anyone had shingles and been given medication?

 

HELP! 

 

THIS IS A COPY OF A  POST I PUT UP RECENTLY ON SYMPTOMS:

 

I've not been  on site a long time as my husband  - strong and healthy and been my carer through w/d diagnosed severe illness a month ago and given 4 months... horrendous journey...hospital... surgery .... chemo... but just as background ... as my stress is beyond limits ..

  

then last week son attempted suicide again for 3rd time ... more stress ...

  

suddenly I am now carer for my husband and not coping ... 

 

now I have shingles apparently and given VACLOVIR med for it.  Took the first dose of 2 tabs this morning. 

 

Saw a DIFFERENT doctor AGAIN (problem with our surgery is that to get in on same day you see the new practising docs - otherwise its 3 week wait to see your usual doc) I have had to resort to sleeping tabs again and told her JUST LOWEST LESS POTENT AS POSSISBLE.   She gave me amytriplatline 10mg.  Took 1 before bed and worked sort of ok, with same previous pattern of waking every 2 hours but was able to get back to sleep as it must have helped with the pain.  Took another one and this morning slightly whoozy, shakey and mild giddy.  Got home and now discover this is also an a/d.  My usual doctor gave me ALEPAM a few years ago (previous son suicide attemept) which I  think is benzo SERAPAX.

 

Now frightened about this other shingles med and how that will add t the mix.  Think if I take it I better stop the new a/d while on this shingles med?  Or just take the 1 new a/d at bedtime?

 

 

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grandmaD

I was frightened to take the anti-viral in case it gave me a bad reaction and unfortunately my brain wasn't working as I was in panic mode and forgot about the drug interchecker.

I was told it can get worse if you don't take it plus you are meant to take it within 36 hours for it to be effective.   It was a huge risk but I decided to take it as the pain was so severe, especially at night, preventing me from sleeping.

 

I wasn't convinced either, that it was shingles, since I have had burning, itching and prickling and needling sensation on my back for years now, which I put down to w/d.

Hubby also said I have had small red lumps like I have now before too.  It could be that I have had shingles come and go all these years and not realised it.

 

The lumps are not blisters and it is a small area and they are not sore or burning at present, just itchy.  What sent me to the docs was the severe deep muscle pain coming from deep inside and throbbing, coming in waves into either my back, right shoulder blade area or under ribcage or on my chest above my boob.  All on the right side of body.

 

The other reason I wasn't convinced is that I have scoliosis and I thought this pain was a result of that.

 

I went back to my usual doctor yesterday, and he confirmed it was shingles.

 

I have discovered that amyltriptaline is not only used for sleeping but for pain.  I found out panadol and ibuprofen didn't help the deep pain of the shingles.  So I went ahead and took 1 amyltriptaline and it did help with the pain as I was able to sleep.  Same sleep pattern as usual, waking every 2 hours but I got back to sleep.  Especially around the 2-4am mark when I usually cannot get back to sleep.  I woke at 3am and the pain was worse and I couldn't sleep so I took another one and slept till 8am! 

 

The only thing I noticed from taking the amyl. was I felt whoozy, weak and shakey on arising and all morning  and just whoozy till late afternoon.

 

I didn't take the amyl. last night but the pain was extremely bad this morning and had me in tears, along with sharp excruciating shooting pains.  So I took half an amyl.   I don't feel particularly tired from it,  but will take the other half at bedtime.

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Songbird

I'm sorry to hear this, GrandmaD.  I've checked for interactions, and it only reports paroxetine with amitriptyline, which makes sense as they're both ADs.  Since you're on a tiny paroxetine dose, and the amitriptyline dose is also pretty small, I think it likely to be low risk.  I don't know anything about antiviral drugs, except that they can cause side effects.  I've asked the other mods, as some of them may have more knowledge about these meds.
 

18 hours ago, grandmaD said:

It was a huge risk but I decided to take it as the pain was so severe, especially at night, preventing me from sleeping.

 

When you say, you decided to take it, do you mean you are now taking the antiviral?

 

I think it is a good idea to take the meds at different times of day, as this will help in identifying the cause of any side effects.  It's also sensible to take the lowest effective dose of the amitriptyline.

 

I have had shingles (quite a few years ago), which were very itchy but not painful.  I hope you get some relief soon.  (((HUGS)))

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grandmaD

Thanks Songbird, good you hear from you again!  Yes, I decided to take the anti viral.  I tried looking it up and as best as I could find I don't think it crosses the brain barrier, which I think is the key to some of our problems with other drugs.  I was told if I didn't start it within 3 days it wouldn't work and also that if I didn't take it, that the shingles could get worse.  This is day 3 and I seem to be okay with the anti-viral med.

 

Unfortunately I didn't read your post until today and agree (with hindsight) with you about the lowest effective dose, however as it turned out, even half a tablet didn't help with sleep.

 

I had the most horrendous night last night.  I had taken half in the afternoon when pain got worse and last night I took one at bedtime and the pain in my back, shoulder blade, chest, ribcage all went through the roof along with anxiety, inner vibrations, intense tingling (which to me always means I have taken or done something that is stimulating.)

It was excruciating, bringing me to tears and sobbing.  I thought perhaps it needed an hour to kick in but after more extremely painful throbbing and aching I took another one an hour and half later.  The agonising pain continued for another 4 hours until I got up and made a hot milk and toast for a distraction, which did help somewhat.  An hour later I went back to bed and after another hour fell asleep and got about 3 hours sleep.

 

At 10am this morning, the TIRED hit me!  Which was 25 hours after taking the first tablet and 24 hours after the second tablet.  I went and lay down for an hour and dozed on and off and when I got up the severe pain had subsided to tolerable. 

 

It is very confusing since the first night I seemed to sleep slightly better after the 1 tablet and again 6 hours later after another tablet.

 

I feel like the ones I took last night caused extreme stimulation to my system, certainly not calming as was supposed to be!  And certainly did not take effect immediately (for sleep) as I read when I googled it.

 

I tried to get into that first doctor again today to ask how to handle the pain and she is off until next week.  My usual doctor was off today.  So I have been taking half a codeine every 3 hours and managing okay with that.  It has always got worse at bedtime, and not sure why that would be, so will see how I go tonight.  It will be a bit of an experiment, I guess... 

 

 

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grandmaD
Just now, grandmaD said:

Thanks Songbird, good you hear from you again!  Yes, I decided to take the anti viral.  I tried looking it up and as best as I could find I don't think it crosses the brain barrier, which I think is the key to some of our problems with other drugs.  I was told if I didn't start it within 3 days it wouldn't work and also that if I didn't take it, that the shingles could get worse.  This is day 3 and I seem to be okay with the anti-viral med.

 

Unfortunately I didn't read your post until today and agree (with hindsight) with you about the lowest effective dose, however as it turned out, even half a tablet didn't help with sleep.

 

I had the most horrendous night last night.  I had taken half in the afternoon when pain got worse and last night I took one at bedtime and the pain in my back, shoulder blade, chest, ribcage all went through the roof along with anxiety, inner vibrations, intense tingling (which to me always means I have taken or done something that is stimulating.)

It was excruciating, bringing me to tears and sobbing.  I thought perhaps it needed an hour to kick in but after more extremely painful throbbing and aching I took another one an hour and half later.  The agonising pain continued for another 4 hours until I got up and made a hot milk and toast for a distraction, which did help somewhat.  An hour later I went back to bed and after another hour fell asleep and got about 3 hours sleep.

 

At 10am this morning, the TIRED hit me!  Which was 25 hours after taking the first tablet and 24 hours after the second tablet.  I went and lay down for an hour and dozed on and off and when I got up the severe pain had subsided to tolerable. 

 

It is very confusing since the first night I seemed to sleep slightly better after the 1 tablet and again 6 hours later after another tablet.

 

I feel like the ones I took last night caused extreme stimulation to my system, certainly not calming as was supposed to be!  And certainly did not take effect immediately (for sleep) as I read when I googled it.

 

I tried to get into that first doctor again today to ask how to handle the pain and she is off until next week.  My usual doctor was off today.  So I have been taking half a codeine every 3 hours and managing okay with that.  It has always got worse at bedtime, and not sure why that would be, so will see how I go tonight.  It will be a bit of an experiment, I guess... 

 

 

 

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grandmaD

I might just add here to clarify about the docs.  Since I couldn't get in to see my usual one I had to see one of the new ones (yet again).  She said I had shingles and gave me the meds for that but I was apprehensive about them with the Paxil.  I wasn't convinced either that I had shingles, as I have had this pain now and then come and go over many years but not ALL AT THE SAME TIME IN ALL THOSE PLACES AND NOT AS EXCRUCIATING.  I thought maybe it was pain from my scoliosis.

 

I asked her for the same sleeping pills (Alepam/Oxazepam 15mg) that Doc prescribed me last time my son overdosed (in 2016).  I know they helped and didn't seem to have adverse effect and wanted what I was familiar with.  She obviously decided the amytriptaline was better for sleep.  I didn't realise until later it was an a/d so I wasn't happy about that.  However, I did use it as I related above.  I am not so sure now after the severe pain.  I guess you never know if I would have had the severe pain anyway ...

 

I went back to my usual doc and he has given me a script for the Alepam, but have yet to fill it in. 

 

The first doc said that if the Amyltriptaline didn't help to take 2 tablets and even 3 or more if I wanted.  She said to get back to her if the Amyltriptaline didn't help, but like I said above, tried to see her today and she is not there until next week.

 

I did get in yesterday to my usual doctor (after explaining my predicament, I was able to get squeezed in) and he confirmed it was shingles.  He also gave me the script for the Alepam.

 

Neither doctors warned me that the pain could be so bad or what to do if I got that severe pain and throbbing ache, etc.  So I will go back tomorrow and find out what they suggest for the pain.

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Songbird
44 minutes ago, grandmaD said:

I feel like the ones I took last night caused extreme stimulation to my system, certainly not calming as was supposed to be!  And certainly did not take effect immediately (for sleep) as I read when I googled it.

 

Sounds like a paradoxical reaction - I guess amitriptyline is not going to work for you. I was in severe pain for months with my frozen shoulder, a different kind of pain than yours, but I know how ongoing severe pain is very hard to deal with.  I was also using codeine, which I found the only thing that worked at all.  I was prescribed gabapentin, which didn't do much for me, but apparently it is used as a treatment for shingles, so it's possible the docs may suggest that.  Are you still using lemon balm?  You mentioned using it for palpitations - I read that it is also supposed to be helpful for shingles.  It's so unfair that you have to deal with this on top of everything.  Wishing you a speedy recovery, relief from the pain and lots of lovely sleep.

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grandmaD

It could be that it caused the intense pain.  I took nothing last night and slept much better and pain was tolerable.  I think I slept better because that previous night with the agonising pain I only got 3 hours sleep.  The pain during the day also makes me feel worn out.

 

It certainly didn't help me sleep that bad night, but tiredness kicked in 24 hours later.  I need something faster acting than that.

 

I did find codeine helped one day before I went to the doc and didn't need to take very much and the next day I just took 1/2 codeine every 3 hours and it helped.

 

My lemon balm dies back in winter due to frosts but is just starting to re-grow.  My 100 year old herb book mentioned rubbing the leaves onto the sores.

 

Back to my usual doc today to see what he recommended for pain and he mentioned gabapentin but then changed his mind and gave me lyrica instead.  It says 1-2 tablets twice a day but I intend to start slowly with just 1 once a day, taken at night.  He said it could cause drowsiness so it may belp me get to sleep also.

 

Thanks for the kind words, it certainly does seem so unfair on top of everything else - you feel like "what have I done to deserve this!" but try and avoid dwelling on that aspect!   It is very cruel. 

 

Today the pain was back to the usual "bad" aching, throbbing, pain and I managed to cope without taking even the codeine, but it did get to me.  At least not the agonising pain I had the other night.

 

I sure hope for better sleeps from now on and a speedy recovery as you wished me, thanks!

 

 

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manymoretodays

Oh grandmaD,

I'm just hoping that it's peaked...... the nerve pain from the shingles.  Day 4 or 5 now of the shingles?

Did you get a chance to check the links left by manny on your post in symptoms and self care.  I'm just wondering if the Lyrica/pregablin will be worth it at all.......if others have found pain relief from it.  You might consider just using anything in the way of pain control for the least amount of time possible.......before dependencies set in physiologically.  And you are tolerating the Valcyclovir okay?

 

I'm somewhat jaded, of course.......reading Lyrica experiences here and then subsequent WD experiences.

I had thought you got some brief relief(sleep) on night one from the amitrytiline.  Perhaps I read that wrong.

 

I think I'll try and get some lemon balm going next spring here.  That's cool that you have a 100 year old book!  You could try some oils, if those are available to you.

 

Do you have a tub to soak in?  I would think that might help.  Oatmeal baths ......if you are having itching.

 

Hoping for best outcomes with you and loved ones.  Oh my gosh.  Sometimes when it rains it pours.

Calm comfort sent your way.

 

Love, peace, healing, and growth,

mmt

Edited by manymoretodays
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grandmaD

I hope it has peaked too!  It is day 5 today.  I still had the pain pain last night and this morning but I think it is better this arvo and tonight, more moderate.

 

I took 1 of the Lyrica last night as he said to up it slowly.  I did intend to take 2 tomorrow but after reading your post maybe wait and see how the pain is and stay with the 1 until the pain subsides.  I most likely panic (something that has been happening a LOT recently - never experienced before, but I guess so much stress. .)  fearing that same excruciating pain at nighty again, but last night I got some good sleep and pain was okay, just got worse on arising and moving around.

 

I see the label says "do not stop this medication abruptly"!  WARNING SIGNS.  My hope is to use it for as least amount of time as necessary.

 

And yes, I was getting good relief from the codeine, but I see you must not take codeine or anti-histamines with Lyrica. 

 

My hubby reckons he has seen those red lumps on my back before, but never said anything.  I have had itchies, prickles, needling sensations on my back on and off for all the years of w/d and put it down to w/d.  I 've had the pain and aching in these 4 places many years also, but not the whole 4 places at once and so bad.  I also get severe "it hies" on my right hip on and off for years.  Now we are beginning to think I've had shingles come and go all those years and not known! 

 

In that case, I've been told the medication may not help, as for it to work you have to catch the first bout of shingles and get on the meds within 3 days.  Otherwise apparently it just keeps coming back and back.  Not good news.

 

Yes, seem to be tolerating the Valcyclovir okay. 

 

I will keep in mind what you have said, since I never thought of it "peaking" and then perhaps improving.  It was really my fear and terror of that agonising pain returning which was intolerable (like labour pains/ having a baby).

 

Yes, the first night on the amytriptaline didnd't help with sleep but somehow it must have helped with the pain because I was able to get to sleep within 2 hours and after waking every 2 hours got back to sleep and then took another one about 3am with the same pattern.

 

The thing I don't know is whether it has "peaked" as you say and I would improve naturally anyway - or whether the Lyrica is helping????

 

What were other people's experiences with Lyrica?  Does it cross the brain barrier do you know?

 

I'm using eucalyptus and olive oil mixed and have been for a long time.

 

The bath/oatmeal is a good idea too.  No, the itching is not much of a problem, it was just the pain.

 

Thanks for the good thoughts, certainly need the CALM and PEACE!!! 

 

I can't remember about Manny's links, and if I did or not, so I'll go back and check them again!!!

 

 

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Songbird
35 minutes ago, grandmaD said:

In that case, I've been told the medication may not help, as for it to work you have to catch the first bout of shingles and get on the meds within 3 days.  Otherwise apparently it just keeps coming back and back.  Not good news.


From what I've read, I don't think you need to catch the first bout of shingles for the antiviral meds to work.  It sounds like the antiviral drugs don't kill off the virus completely, they just help to reduce its activity, and eventually the virus retreats back to the nerve root from whence it came. 

 

There is also a vaccine that is supposed to prevent or reduce the risk of reocurrence of shingles, and reduce severity of symptoms if it does reoccur.  You could look into that once this bout is over.

 

I don't think shingles necessarily keeps coming back and back.  Some people only have it once.  I never took anything for my shingles and it was years ago and it hasn't come back so far, although I know it's still hiding there in a spinal nerve root and could be triggered to reemerge any time in the future, which may or may not happen.

 

You are right to be cautious with the Lyrica.  Looking at the interaction checker, it doesn't look dangerous to use with codeine, but they can cause dizziness and drowsiness.  It can also cause dependence and may need to be tapered.  Apparently it can take up to several weeks to work.

 

 

 

 

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grandmaD

I did some research also, Songbird and discovered it is from one nerve root but can involve 2 or 3 others nearby.   It was described different ways, like an inflammation, an infection or an irritation.  

 

I still cannot find if Lyrica crosses the brain barrier and if it affects neuro transmitters.  My concern is that if so, does it affect the same neuro transmitterss as the a/d has? 

The best I could find is that it does affect the brain by cutting off the signal of pain to the body.  Since the shingles affects only 1-3 nerve roots, I'm not sure I like the idea of it affecting the brain in this way.

 

It is day 2 on LYrica and now 2 tablets, 1 in the morning and 1 at night.

 

I can't say for sure it has made any difference to the pain and aching.  I had a fairly good night, usual pattern of waking every 2 hours but then about 4.30am the pain prevented me from sleeping.  Upon arising the pain was still bad and I ended up taking half a codeine with breakfast which didn't make me dizzy or sleep and another half at lunch.

 

Songbird, I found from reviews it took up to 1 week and even 3 weeks before it worked for the pain.  When the pain is bad, what is the point of waiting all that time and now here I am taking codiene as well anyway.  Might as well just take codeine!

 

I really hate the idea of taking anything that will be detrimental to my poor brain which is in a bad way already and my central nervous system which is already crap.  Also from the reviews I read there were lots and lots that said it didn't help with the pain anyway and maybe 1 good review in every 10 bad ones.

 

I am inclined to just stay on it for a week and see if it helps.

 

 

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grandmaD

I forgot to mention that from what I read, it all starts with a nervous system that is shot/gone haywire.   This is the result of w/d process.  The constant stress from tapering results in a weakened/depleted immune system.  Depending on outside/further stress factors, will result in greater severity of the shingles.

 

I know my nerves are in a bad way.  So if my central nervous system is crook, irritated, inflamed, infected, damaged (whatever the case may be - or the whole lot) then taking Lyrica for a week may help.  But my nervous system is not going to be instantly/suddenly healed in a week and therefore I suspect my condition will return once I stop the Lyrica.  So I will have gained nothing, really.

 

I am inclined to stop the Lyrica now and see if it gets worse.  I can always start it up again if need be.

 

What are your thoughts, everyone?  I did a search on SA and seems most people weren't prepared to take anything that might upset the w/d process and they just rode it out.

 

There is a big advertising push here in Australia at present with posters in all doctors surgeries about the vaccine for shingles and talk about it being "around a lot" lately.

 

I will talk to the doc about the vaccine when I am better.

 

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grandmaD
18 hours ago, Songbird said:


From what I've read, I don't think you need to catch the first bout of shingles for the antiviral meds to work.

I hope that is right!  Would be good news!

There is also a vaccine that is supposed to prevent or reduce the risk of reocurrence of shingles, and reduce severity of symptoms if it does reoccur.  You could look into that once this bout is over.

Will do that.

I don't think shingles necessarily keeps coming back and back.  Some people only have it once.

I am thinking that this is my case, since you can have the pain and not the lumps.  Mind you, I could have had them and not known, since I can't see my back and that is where they are.  Also hubby reckons he has seen those red lumps/patches on my back before but didn't say anything.

I cannot explain the aching that I get in those 4 areas on and off for years except maybe this is why.  Just that this time it is in 4 areas all at once!

 

 

 

 

 

 

Also, there was another area on my hip (RIGHT SIDE ALSO) that got extremely itchy with a  small red rash and keeps coming and going.  I have 3 grey spots/scars? now and wonder if shingles leaves a scar like that?  That might also explain why that keeps coming and going.

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grandmaD

My herb book says that for shingles it can take a long time to get over it.  Their answer is to address the weakened immune system by eating lots of fresh fruit, vegetables and getting sleep, fresh air, exercise, rest and taking good care of self.  I think the lack of sleep for me is another thing contributing to my depleted system.

 

It suggests lemon balm tea at night before bed.  I see my lemon balm is growing new leaves at the base, so I'll make some tea as I only need a few leaves and there should be enough to do that.

 

Borage is also good apparently:   "Its chief properties are diuretic, anti-septic and anti-inflammatory and can be used to treat urinary infections.  It is used in the form of a cold-water infusion (1 tablespoon to 1 cup water) taken 2 or 3 times a day in small drafts.  It's purported effects on the central nervous system have been noted, for instance in menopause, but not been proven.  It is recommended for nervous exhaustion and depression and as a fever remedy."

 

My hundred year old herb book says:  "The tea cleanses the blood and is effective for fever, yellow jaundice, to expel poisons due to snake bites, insect stings, etc.  It strengthens the heart and is good for cough, itch, ringworm, scabs, sores and ulcers. "

 

I am now thinking I will do some more reading up as to how to strengthen my nervous system and immune system.  Perhaps this is a better way to go than numbing the signals in the brain which could do more damage to more neuro transmitters for all I know!  I will still have to find ways to address the pain, but I think would rather take something on as need basis rather than on something twice a day every day.  What do others think???  It is very hard when you don't know what to do and seems to always come back to trial and error.

 

If anyone wants to add to this, feel free!

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grandmaD

I found this info on Wikepedia which looks to me like something to do with calcium.  I wonder is it a calcium channel blocker?  I think that sort of med is for high blood pressure.  Is it the same thing, I wonder?

 

https://en.wikipedia.org/wiki/Pregabalin

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Songbird
2 hours ago, grandmaD said:

I found this info on Wikepedia which looks to me like something to do with calcium.  I wonder is it a calcium channel blocker?  I think that sort of med is for high blood pressure.  Is it the same thing, I wonder?

 

I don't think it is exactly the same thing as the BP meds, but I think it is some kind of calcium channel blocker.  It sounds like it works by calming nerve cells down so they don't fire as much.  It affects neurotransmitters but not in the same way as ADs - with nerve cells not firing as much, less neurotransmitter is released.  It sounds like it works mainly on the glutamate and norepinephrine systems.  It seems that it can affect the heart, probably because of the calcium channel blocking action.

 

I must admit when I tried gabapentin for a few weeks -  I think it's similar to pregabalin - it didn't seem to do anything, although my shoulder pain wasn't the same thing as shingles nerve pain.  I took codeine for a while, which helped a little with the pain.  Codeine can be addictive, but I had no trouble stopping it.

 

With a bit more reading around, I see that vitamin C and vitamin B12 are supposed to be helpful for shingles.  You could also look into the amino acid lysine, and dietary balance of lysine and arginine.  Those more natural options sound lower risk than pregabalin to me. 

 

We can't really tell you what to do one way or another.  You'll need to weigh it all up and make your own decisions.  It's about weighing risk versus benefit, and I suppose when pain is very severe the benefit may be worth the risk.

 

I think it's definitely a good idea look into natural ways to strengthen your immune system.  I know you must be very stressed from life events - see what you can do to ease that stress as much as possible.  You need to take care of yourself - be kind and gentle with your system as much as you can.  I'm sending you kind and gentle thoughts!

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grandmaD

Thanks Brass and Songbird.  I checked out Mannys links - and had already so, just didn't remember!  Brass I couldn't read that one as some other info came up to block the info and didn't know how to get rid of it, sorry!

 

Anyway, after 3 days it didn't help with pain and I was taking codeine with it anyway and thought I may as well just take codeine which I did and it helps.  I also spoke to someone else who has had shingles and used voltarin, which is an anti-inflammatory and had good success the first day (when you take 2 tablets to begin with) but now back to just 1 tablet every 4-6 hours and pain/ache is moderate.  You can only take this stuff 3 days anyway, so not sure what to do after that!  I am hoping it will subside by then.

 

In the meantime hubby had a shivering attack in the early hours and we had to get an ambulance.  His temp was 39deg.  His blood levels (esp. white cells) were down to almost nil last chemo treatment.  I don't think they should have gone ahead with it, but the decided to do it 20% reduction.  He was very low for 3 days and seemed like he was slipping away, very scarey.  They took him to local hospital and then Canberra and after 5 or 6 lots of anti-biotics and white cell injections he has perked up and sounds much better.  I didn't go to hostel this time and coped much better by staying home.

 

I am trying to concentrate on keeping to my routine, resting and eating right, walking, long hot baths, etc.  W/d symptoms are good at present, it is just the anxiety from hubby and resultant insomnia, palpitations and breathlessness but these are mild to moderate and is just the shingles pain/aching my biggest problem.

 

Also taking 1/4 of the sleeping tablet at bedtime and another 1/4 about midnight which helps get back to sleep and calm.  I have come to realise that it has been the lack of sleep all these years that has probably contributed to my depleted nervous system and immune system.  I hadn't realised to what extent my central nervous system was out of whack either, but I sure understand now as I have recently had not only panic attacks (which never used to have and find frightening) but also hysterical (also not used to and find embarrassing, ashamed and scared). 

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grandmaD

2 weeks now of shingles and pain is still relentless... causing me to get desperate at times and also depression and teary...

 

Several times made the bad mistake in desperation of taking something to calm me down or for pain at the same time as my Paxil (NOW IS JUST UNDER 1/8th tablet) resulting in feeling like I would die... palpitations strong, heavy heart struggling to work and flopping around, very high tingling, hi anxiety, feeling totally stressed out, difficulty breathing... I think it was from from taking the 1/8th with 1/2 codeine. 

 

When this happened I recalled another time in desperation to calm myself (began having panic attacks recently and hysteria with son's o/d) took 1/4 sleeping tablet with the 1/8 Paxil.  It is so FREAKY THE AFFECT ON BODY.  During these times relaxation and breathing exercises didn't help, besides the fact I felt like a crazy person and couldn't think clearly anyway. 

I have learned now to take these other things SEPARATE to the Paxil.  Such a devastating impact with such small doses of both tablets.

 

Feeling very despondant with the continual pain, throbbing and aching.  Despite feeling exhausted, still takes 2 hours to fall asleep  still wake up every 2 hours.

 

It's hard to believe that there is life after Paxil...  Trying to tell myself it will get better once I get over the shingles...

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Carmie

Hi GrandmaD, 

 

Im so sad to hear the struggles you’re having with shingles. That’s the last thing you need while going through withdrawals. I’m really sorry. 

 

Just thought I’d drop by and give you a hug🤗

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Songbird

I'm sorry to hear you're having such a hard time still.  (((HUGS)))

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ladybug

Gran, I am so sorry to hear about all you are going through right now. I wish there was something I could do for you. I will pray for you that you catch a break soon. ❤️

 

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grandmaD

Update

It is now 5 weeks I’ve had shingles.  This has been a very dreadful time, on top of crisis after crisis in family with one thing and another.  I am grateful for you kind thoughts , hugs and prayers everyone.  It is such a blessing to have support from you all!

 

The pain of shingles was agonizing, with deep throbbing coming in waves every few seconds throughout the night, sharp shooting pain, burning pain and a constant deep, heavy aching.

 

I was so desperate I took the amytriptaline morning and evening (10mg).  This resulted in making anxiety go sky high, along with very high tingling sensation, palpitations, rapid pulse in the 100’s up to 115 each day and breathlessness. 

 

The reason why this new doctor gave it to me was to help me sleep.  It did nothing to help sleep and gave me the impression it was a stimulant, so I stopped it.  It didn’t help with pain.

 

Then I used the Lyrica as I was beside myself and ended up in tears every day and severe depression.  It had the same stimulating effect.

 

I was also using Voltarin Gel for inflammation relief which helped sometimes but not others.

 

The second week was when the pain caused depression but also the itching got a whole lot worse, causing further frustration and tears and was unbearable.

 

I found chemist sold patches and I felt a glimmer of hope, something to relieve pain and help me sleep (as shingles was much worse at night).  The first night it did nothing.  I think it helped somewhat, with intense pain, but left me with the deep intense aching still.

 

The itching seemed to get worse and worse and other issues so I began to question if the Voltarin Gel or the patches or both were making things worse, so I stopped both of these and found codeine was probably the most helpful.

 

Then I re-read Songbird’s post about using the least amount of dose possible.  So I tried the amytriptaline once again, cutting them in half, i.e 5mg morning and 5mg at night.  This time, I found it was not stimulating, but calming, made me sleepy so I wanted to sleep at about 10am - 11am.  It helped a lot with palpitations, anxiety and breathlessness.  HOWEVER, after 5 days on it I got MUSCLE SPASMS in my back sending me to the couch for 2 days and I had a permanent headache for 5 days… so I stopped it AGAIN.

I was going to try the Lyrica again but read up on it and one of the side effects was HEADACHE.  I was a right cot case by this stage, believe me... in tears every day...

I went back to using codeine but now found I have to go to doctors for a script as you cannot buy Panadol/codeine any more at chemist!  I had been in an out of doc already several days and chemist $50 a pop each time for drugs I cannot take!

 

Then the itching got even worse, with prickling all over along with itching, driving me crazy so back to the doc.  I was convinced that I now had SCABIES.  But she didn’t even look at any of the itching spots on me, but said it was ANXIETY and to keep taking the amytriptaline!  I won’t go on about that now or I would fill a book about it!!!!

 

So I went back to codeine, and now I am cutting back codeine and coping with Ibuprofen and Panadol and sleeping tablet at night. 

I am beginning to have better days, coping better, some days the pain is better than others, just hope it soon goes away completely.  I would appreciate your prayers, thanks!

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Songbird

What a horrible time!  What is it with medical people calling everything "anxiety"?  What utter codswallop!  

 

I'm glad you are starting to have better days.  Hopefully it will be gone soon.

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grandmaD

Songird, YES truly horrible!  I am getting the impression that when any doctor looks at my records it must come up in big red letters “she has anxiety”.   Well, yes, that’s true, I do!  But it is FROM WITHDRAWAL and that’s the bit they just DO NOT GET!  It is very frustrating!

 

Anyway I then went back to codeine which did help, and then as the pain began to subside in this last week (it is 6 weeks now I’ve had shingles) I began to use Panadol and ibuprofen and then had one day I had no pain and no aches so stopped the painkillers but the pain and aches came back next day!  Gradually have eased off the painkillers.

 

Also went back to using lemon balm.  Sipping throughout day, made me calm, stopped the anxiety and stopped the palpitations.  Slept good that night, but still woke every 2 hours but was able to get back to sleep ok which was a nice change.

 

Did same thing next day, felt relief from anxiety and palpitations but did make me feel tired throughout the day.  That night I kept sipping every 2 hours but was a much stronger solution and woke with dull headache/pressure head.

 

Stopped it yesterday and will try again tonight with weaker solution.  I can see now that anything that is calming if it is too strong, whether lemon balm, sleeping pills, other a/d’s, gives me a headache!

Hopefully I am on the mend from shingles and can get to post my 7 year update from July which I have not had time, ability, energy, etc. to do as yet.

 

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Songbird

That sounds like a fairly positive update.  Hopefully the worst of it is past now.

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grandmaD

Thanks Songbird, yes it is much better still this last week, sometimes come and go but mild, except last night with insomnia for 5 hours and the shingles aching/pain was bad but perhaps accentuated by the lack of sleep.

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grandmaD

7 YEAR UPDATE JULY 2018

 

THINGS THAT ARE MOSTLY GONE IN THE 7TH YEAR OF TAPER

Scalp crawlies

Body jolts

Dry eyes and mouth

Nausea

 

THINGS THAT GOT WORSE IN THE 7th YEAR OF TAPER

Head pressure worse than previous 2 years

Headaches worse than previous 2 years

Breathlessness worse than previous 4 years

Palpitations worse again and worst in 7 years

Head banging worse again and worst in last 6 years

Anxiety worse again and worst in year 7

Sore heads worst for last 5 years

Indigestion worse than previous 2 years but not as bad as it used to be before that

Pretty much all these symptoms just got worse and worse every year.

 

THINGS THAT REMAINED THE SAME IN THE 7th YEAR OF TAPER

Ear ringing

Tingling in legs

Painful/aching legs, ankles and feet

Body vibrations

Unable to shop or take care of bills or drive

Palpitations – still every day from mild to mod to high and at times extreme

Adrenalin rushes causing faint/dizzy spells usually in morning from time to time

Rapid pulse worst ever – every day, usually in the 90’s and 100’s

Insomnia worst ever but same as last year

 

THINGS THAT IMPROVED IN THE 7th YEAR OF TAPER

Tight chests – sl. improvement

Tired sl. improvement

Head vibes good improvement

 

 

 

 

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grandmaD

 

YEAR 7 UPDATE

Overall drop .5mg (same for past 4 years)

 

To be quite honest, this is a very disappointing update.  Considering I have been tapering 7 years now, first year for 5% and then 2.5% every 8 weeks on average with a 6 month hold each year for years 4, 5 and 6.  At least managed to get through this year with only a 3 month hold.

 

I do know I was thrown severely backwards in years 2015/2016 when I was unknowingly switched to a generic brand and I feel it has taken a good 2 years to recover from that.

 

Some symptoms were showing signs of improving on average each year, until years 5 and 6 and they took a nosedive and I put that down to the switch.

 

Energy levels and tight chests still go up and down despite overall improvement

The only consistent good improvement was head vibrations.

 

What has me worried is the many symptoms that have continued to keep getting worse with every passing year, and are a daily occurance now, such as palpitations, breathlessness, anxiety, insomnia and rapid pulse (taken after resting 10mins early morning and has been in the 100’s mostly or 90’s). 

 

I have had a friend tell me I need to quit cold turkey and I just wonder if I might as well, but then there is the fear that the couple of things that have improved might get worse!  Also those symptoms that have remained the same might get worse!  I feel so trapped and don’t know what to do.

 

My taper is very similar to people that have cold turkeyed – and I find it confusing that I’ve had such a rotten w/d despite going super slow. I am also quite fed up with having to pay for tablets I should never have been put on in the first place and left on.

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manymoretodays

Hi and hugs GrandmaD!!!

You are a great turtle and I am rooting for you.  You WILL win this race that is not a race at all sometimes.........

I hope things are at the very least hitting some kind of plateau now for you.  Such endurance you have.

Anyway.......just thinking of you.

I hear a lot of frustration right now.....and yes, that's okay, all things considered.

I am sending flowers, your favorite eats, housekeeping, driver, gardener, cook, and personal assistant to you now.........I'll throw in some angels too.

 

Love, peace, healing, and growth,

mmt

p.s. thank you for the update as well

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Gridley

You will make it, grandmaD.  Sorry you've been having such a hard time.

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Songbird

 

On 10/18/2018 at 2:02 PM, grandmaD said:

What has me worried is the many symptoms that have continued to keep getting worse with every passing year, and are a daily occurance now, such as palpitations, breathlessness, anxiety, insomnia and rapid pulse (taken after resting 10mins early morning and has been in the 100’s mostly or 90’s). 

 

I had a terrible time with palpitations early this year, and after my vitamin B12 shot they mostly cleared up.  I don't know if you've tried B12.  If you don't want to risk a shot (it's high dose), you can get sublingual tablets.  See:  Vitamin B12 - essential for mood, nervous system

 

On 10/18/2018 at 2:02 PM, grandmaD said:

I have had a friend tell me I need to quit cold turkey and I just wonder if I might as well, but then there is the fear that the couple of things that have improved might get worse!  Also those symptoms that have remained the same might get worse!  I feel so trapped and don’t know what to do.

 

What worries me with this, is that if your system reacts with symptoms from such small drops (and the switch to generic), how would it react to a really big drop?  I've seen a lot of people get into trouble with the kind of thinking "I'm suffering really badly with w/d, I might as well just cold turkey, how much worse could it be?" - and then they find out how much worse it can be, and really regret it.

 

I think you've been doing brilliantly with your turtle taper, and you're down to a very low dose now!  I'm sorry you're still having a rough time with symptoms.  Sending you lots of (((HUGS))).

 

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grandmaD
On 10/20/2018 at 6:22 AM, manymoretodays said:

Hi and hugs GrandmaD!!!

You are a great turtle and I am rooting for you.  You WILL win this race that is not a race at all sometimes.........

I hope things are at the very least hitting some kind of plateau now for you.  Such endurance you have.

Anyway.......just thinking of you.

I hear a lot of frustration right now.....and yes, that's okay, all things considered.

I am sending flowers, your favorite eats, housekeeping, driver, gardener, cook, and personal assistant to you now.........I'll throw in some angels too.

 

Love, peace, healing, and growth,

mmt

p.s. thank you for the update as well

Thanks for the cheering support Manymoredays!  Much appreciated.  Yes, I do believe I will win this race... well, crawl, that is ...  I am determined to get off that's for sure.  Other suggestions have been to switch... which I think I already said I tried with the amytriptaline, without success. I am getting by with sleeping tablets once again, just to get 1 or 2 nights sleep and some calm from the high anxiety.  I can get by with just 1/2 but that's not the answer either, as the anxiety seems to come back ramped up even worse.  I had some relief with lemon balm at times and other times another herb, borage.  I have found that whatever I use to help calm the anxiety, if I use too much I get headaches, so it's a matter of finding the right amount.  I suspect if I took a lesser dose of the amytriptaline I could do that, but it is so small tablet I really can't be bothered grinding it and weighing while still having to do so with the paxil. 

 

I am coping better, but still struggling - especially with the neuro emotions now, just so out of proportion and so intense and crying so much more.  That started end of last year with just a tear now and then but recently cried every day for 3 days... I hope that is a sign that I am closer to my healing and the end of this horrid w/d.  Not easy to deal with because now reacting to all sort of little things friends say ... not coping with that especially in light of other events recently that has forced me to become my husbands carer whereas before, he was caring for me.

 

Thanks for the flowers!  My kids came today to celebrate my birthday tomorrow and brought some lamingtons.  I don't eat sweets but I did have one and it was very sweet.  I have an idea that sweets/sugar ramp up the anxiety also.  We have a cleaner starting next week which will take a load of pressure off and also a teenage boy willing to help me weed the garden and do odd jobs.  The cook you sent hasn't arrived as yet!  But I do know we are surrounded by a multitude of angels!  I also have a lovely new friend, who is very supportive who turned up out of the blue.  This is amazing as I had cut myself off from friends the last 7 years and just really had the one local friend on a weekly basis.

 

Thanks again for your support, I am just so sorry I do not have time to spending here anymore reading others' journals or helping others so I may not be on here much more in the future, but I have been very grateful for this site.

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