Africa: Pins and needles as well as numbness in my toes, feet, arms and hands

[Africa]

Oh you know Scallywag I have never thought of that. You could be absolutely right!

 

The cystopurin has made a huge difference and already today I feel a lot better. 

 

Thank you for all your support. When dealing with WD it means so much to have someone to talk to and get some advice. I really appreciate your time.

[scallywag]

Glad you're feeling better.

[grandmaD]

Hi Africa, thanks for your post on my journal and your words of encouragement.  Your story is similar to mine and many others but a good thing that at last we found a forum like this one with so much help, advice and support! 

 

Paxil is so hard to get off, but you are doing the right thing, I think where you are at in dose I was doing a 5% taper for a year.  You mentioned having cramps and spasm on my journal, what other symptoms do you have. 

 

I read quickly thru your journal and noticed you first started with pins and needles.  apart from headaches, which I think was a side effect, that was what happened firs up with me also.  My feet were like blocks of ice and my lovely daughter bought me a footbath.  I used to sit there with my feet in it and it was soooo lovely!  I put on woollen socks and ugh boots (woollen) and they would stay warm for an hour!  That was more than 10 years ago and I still have that same problem, so that I didn't think it was w/d but have noticed comments saying it is.

 

I wish you all the best on your journey and pray for success for you.

[Africa]

Hi GrandmaD

 

Thank you so much for posting on my journal. It really means so much to me to have your support especially because you know exactly what it's like tapering off Paxil.

 

My husband and children were very supportive when I first started getting symptoms and did anything to find out what was wrong with me. GrandmaD I thought I had something dreadful. The rest of my family think I'm just neurotic and never ask me how I am. I would also never tell them how I am feeling anyway because they just think I'm exaggerating.

 

The muscle pain and spasms I am getting now came on over a few days. This morning even my sides are sore and my back and neck are so stiff. When I get out of bed my legs and ankles ache until I have moved around a bit. The headaches I get seem to strart at the back of my head so I'm assuming they are tension related.

 

My cold feet did improve after the initial bad WD but are still not normal. I also walk around for the house with big fluffy socks! How lovely of your daughter to give you a footbath. I think I should definitely get one before winter also knowing that the WD symptom of cold feet can come on suddenly at anytime. One of our members who has sadly passed away now (from a bike accident) also had cold feet and hands which were constant for many years. My feet are also still tingly and there are some days my toes burn but they are definitely better than they were in January.

 

I think you are amazing and so patient to get to the dose you are on now. I always look at your signature to see how you're doing especially when I just want to get off this stuff and would rather reduce quickly. I worry everyday about protracted WD and wonder what's next but just having all the support from SA helps me get through this and each day.

 

Wishing you all the best too.

 

(((HUGS)))

[grandmaD]

Africa, I think the support aspect is so vital and so important especially because we all have been through it and know how difficult and painful it is and also that it is for real and to know we are not neurotic.  I think many of experience the same thing with family members and friends.  My children never ask how I am either and i stopped telling them a while back and they still don't ask and that is hurtful, but I just tell myself they don't understand.  I am sorry about your hubby, but it really takes a special person to hang in there with us I am sure.  I try and encourage my husband as much as I can and also encourage him to get out, even though I can't, so he has got involved with the Mens Shed and I think that has been really helpful for him.  Even recently, a friend who has seen me through all this has started telling me the cramps and spasms are just old age and must think I am also exaggerating because she tried to get me to be more positive!  I will have to stop telling her how I am too, now.  I doubt anyone could understand if they haven't experienced it.  W/d is like nothing else on this earth and just goes on an on.  I once said I would rather have a baby every year and look after it. 

 

Is the weather there starting to get cold, could it be the cold do you think?  I discovered this has happened to me every year around winter time, which was very interesting, so I think it is a combination of weak muscles over the years, cramping and with the cold causing spasms.  I am still recovering from another severe and painful back spasm 4 days ago and not been for a walk yet.  It is very frightening.

 

I have been putting up with the cold legs/ankles and feet but this has made me realise I need to keep warm, especially those areas.  Today I had a shower at lunch time and I could feel the warm go through to my bones for a couple of hours afterwards, so I probably should get my footbath back out and keep my lower limbs warm.  I just get too lazy as it is a hassle heating the hot water, emptying the thing, etc. but I should be kind to myself!

 

I sure can relate to your desperation to wanting to get off!  I thought I could do it in a year, then the next year for sure and definitely then in the 3rd year!  By the 4th year I was so mad about it!  One thing I have discovered is that you can't just dictate to your body what you will do as far as dose, time frame, etc. goes - the body has a mind of its own and will react/scream and you have no choice but to slow down!  I feel trapped and this causes frustration.  It is so difficult to accept, but I think that's the only answer!  You are going much faster than I did at that dose, so you will get there faster, as long as you can cope with the symptoms.  You weren't on for as long as I was and you are much younger, so you will be okay and will not take you as long and not go into protracted w/d.

 

It's good that you worry about what might be next!  That way you won't be surprised if something comes at you out of the blue!  On the other hand, nothing might happen and you can be very glad!  I was not prepared for many of the new symptoms I experienced and that dealt me a blow each time.  Keep on heading in the right direction and one other thing, I think it's healthy to be able to talk on here, especially to get it off your chest and OUT, especially when, as you say, friends and family don't understand and you can't talk to them.

[Junglechicken]

Africa and GrandmaD - Thinking of you guys, and understand the aches, pains and headache symptoms are a serious bummer as I am going through this now.

 

I think age plays a part, but having been very active and then suddenly being struck by stiffness throughout the body is scary.  All set to go and see a specialist.

 

Man it sucks 

[grandmaD]

Yep - it sucks BIG TIME!  May I ask how old you are?  I have been told by friends its an age thing since I was FORTY (which is when I first started trying to go off this drug on my own) and I can say NOW that it wasn't an age thing, but I guess it could be now I am over, but then again, my dad was in excellent health until he was 80 and I used to feel embarrassed because he could walk up 3 flights of stairs to his apartment and I couldn't!  The only aspect about the age thing now, for me, is that I do believe it takes longer to heal the older we get.  All the best, keep sucking it up!

[Junglechicken]

I'm 42....

 

BTW, my parents don't ask how I am either. They are too wrapped up in their own health/life issues.

 

My husband is an absolute gem, I am certain I wouldn't be here if it wasn't for his love, patience and support.

[Africa]

Hi GrandmaD

 

I am 45 years old. I also think the older we get the more difficult it is to deal with WD and that it takes longer to heal.

 

I hope you've had a better day today and kept your feet warm!

 

Today the numbness on my forehead moved over my right eye and my shins and upper thighs have been burning. I think the WD just catches up with me and I need to hold for longer periods.

 

It's Summer here in England but I'm already dreading Winter. I feel like I can cope with the WD much better when it's lighter and warmer. When it's cold and dark it makes me feel really down and I just end up hibernating which doesn't help. We are originally from South Africa and have only lived in the UK for 8 years but I still miss the sunshine.

 

Thanks for your support GrandmaD and Alex. Thinking of you both. 

[Junglechicken]

Thinking of you too Africa!

 

Its funny because I long for autumn/winter because of the seasonal allergies. I just want all sources of pollen to disappear.

 

You have a point re: as you get older, the body will take longer to heal from WD.  Maybe this is part of our frustration??  Knowing that our bodies just can't bounce back from trauma like they used to.

[grandmaD]

Chicken, you are still a spring chicken!  You have got lots more time on your side to heal, which is good, remember that!  We are truly blessed those of us with caring hubbies and need to encourage them as much as possible.  When my friend got breast cancer her hubby up and left her!  My dad didn't want to know how I was until he was diagnosed with mesothileoma when he was 80.  previous to that he was in excellent health and I think it was being sick that helped him understand where I was at.

 

Africa, I was your age when I started trying to get off on my own!  I know you probably think you are old, but you are NOT!  It is hard though at this time of life when you could be involved with so much but instead you are alienated and disabled.  I hope once through it all we don't have to deal with "old age issues"!

 

For the last few days I kept myself warm - even wear a beanie to bed and scarf and long sox - hubby wants to know what football team I am with!  But I told him I am sitting on the side lines for now.  Today, I couldn't be bothered as I was super crap.  I was frightened to do too much too, because same things happened as before the last back spasm - awake 4 hours, woke with a bad head, strong vibrations and palpitations all night and rapid pulse along with the cramps in the legs worse.

 

How are you guys today?

[grandmaD]

Thinking of you too Africa!

 

Its funny because I long for autumn/winter because of the seasonal allergies. I just want all sources of pollen to disappear.

 

You have a point re: as you get older, the body will take longer to heal from WD.  Maybe this is part of our frustration??  Knowing that our bodies just can't bounce back from trauma like they used to.

I know what you mean about the allergies, but did forget about that!  Yes, I think it is part of our frustration, even back when I was 40 and going through w/d others were saying it was old age, but I knew it wasn't as I was very strong and healthy before that.  Part of our frustration could also be that we aren't getting any younger either.  I think not just the w/d but body not being what it should be, in fact I wonder if I am absorbing nutrients properly with my guts issues.

[Africa]

Just an update. I've been doing okay with my recent reduction but definitely feel more anxious about everything in general. My feet get tingly quite a bit and my forehead still has that weird pushing pressure feeling on it.

 

I was doing okay until last week when I was diagnosed with litchen sclerosus. This is an autoimmune disease which affects the skin and I've obviously had it for a little while but didn't realise. I saw an NHS doctor first who has referred me to a dermatologist who specialises in this but because I was so scared and anxious I also saw someone privately. This has really been a hectic year for me!

 

I'm scared and my health anxiety is through the roof so not really sure whether to do another reduction for a while. I'm in Spain on holiday at the moment (all I want to do is go home) and was due to do a 5% cut in 10 days when I am back in the UK.

[Alexander]

Hi Africa,    I have just passed 2 years off Paxil after 14 years of 20mg a day.   I understand what you are going through and all the health anxieties.   It's sometimes hard to distinguish how we would have felt if we had never been on ad's.   Although I am 58, I'm sure many of my symptoms are still related to WD.   Insomnia is still a major issue that aggravates lower back pain that I have had for over a year now.    My anxiety levels go through the roof  and getting through the days is a struggle a lot of the time.   Also my anger and patience levels are in serious disarray.   Like Jungle chicken, I have stiffness throughout the body and I do exercises through physiotherapy,  but the healing is so painfully slow.    Just try and keep going Africa.   All we can do is plod on,  but how I wish I could sleep peacefully!

[Alexander]

Oh yes also, like you and others Africa, any medication I react badly to also.   Recently had trimethoprin also for cystisis which brings back WD problems.   Been taking 5HTP recently desperate for sleep but think it is making me groggy with stomach pains.

[Junglechicken]

Africa, please know I am thinking of you always.

 

Did you go and have that pedicure like you said? What about a calming facial? Do things that make you feel good....even if you can derive joy for a bit.

 

An old friend who I met up with on Monday (she is planning to train to be a psychotherapist) told me that when I was in pain; that I should be a mother to that pain and nuture it.

 

She also told me to ask the pain what it wants me to do to help it. What is it trying to tell me?

 

This way, we give ourselves a break and don't be so harsh on ourselves.

 

I am trying to do this myself as I am getting pain popping up in weird places.

 

You will get through this!

 

HUGS!!

[Africa]

Congratulations Alexander for being two years off Paroxetine. I also wonder what and how I would have felt if I had never been on AD's. Do you know that if for some reason I have forgotten to take my tablet at night, I just cannot fall asleep. I think insomnia must be really exhausting and I hope this improves for you.

 

Thank you for your support and encouragement and I hope you start feeling better. Thinking of you.

 

Thank you JC for your advice and support. I haven't had a pedicure yet but will try and get one done.

I think I should really look at doing a meditation course. I need something to help me with this health anxiety. It's such a vicious circle though. The physical symptoms and now the LS scare the life out of me!

 

Thinking of you too.

 

Hugs to both of you.

[scallywag]

Africa, I'm sorry to hear that your vacation is overshadowed by anxiety.  I hope you'll consider paying attention to your body, your emotions and what's going on in your life rather than the calendar when it comes to tapering. In other words, consider holding your dose where it is while you get information about your health and sort out next steps.  Be gentle with yourself.

[Africa]

Thank you for your advice and support Scallywag. I know you're absolutely right and I really don't think I can taper anymore right now. I feel like I've just had too much to deal with and can't cope with more WD symptoms as well. I think I have to remember that I won't be failing by keeping my dose the same for a while.

[Reflex]

Hi Africa

Hang in there. Take care of yourself. Know that you have done amazingly to get to where you are in your taper . You are just going to hold and have a holiday in tapering.

Big hugs

Reflex

[Africa]

Hi, I have been on 5.9 mg of paroxetine for 5 days now ( I tapered from 6.3 mg).

 

Suddenly, yesterday afternoon my face just started getting very hot and red and is there most of the day. I don't get sweating with it but just extermely hot/flushed and only my face.

 

I'm obviously very worried about this and have googled all sorts of scary things.

 

Has anyone ever experienced this or know whether this is common in WD?

 

Thank you.

[scallywag]

Sweating and heat flushes are a withdrawal symptom.  Because it takes 4 days after a dose change for the new level to become steady, it's fairly common to see a symptom or two appear after 4-5 days. Take a deep breath -- it's probably "just" withdrawal. 

 

Body temperature disregulation

 

Burning skin

[Africa]

Thank you Scallywag. It was day 4 that it started. It just starts and stays for ages. I hope it goes away as it makes very anxious.

 

Thank you very much for the links.

[Junglechicken]

Africa,

 

Aren't these also peri-meno symptoms?  Its possible that the WD/dose drop exacerabate peri-meno symptoms, and I know your doc has mentioned this to you a few times.

 

I totally understand your fear, but your bloods were perfect, so your CNS has been thrown a loop coupled with peri-meno stuff and there you go, night sweats and hot flushes/hot head sensations.

 

Hang in there Africa, you are doing amazingly well.

HUGS,

JC

[AliG]

Africa.   There is absolutely nothing to worry about with these symptoms. Temperature dysregulation is common and normal in withdrawal. It's annoying and uncomfortable but beyond that , nothing to get stressed about .  I've had it for over 2 years and it barely even registers with me now. It's just "withdrawal normal". 

 

If there are hormonal issues then it's to be expected that they could possibly be exacerbated as well . I would think it could be a combination of both.

Try not to become anxious.  It will hopefully resolve in time.

Ali

[Africa]

Hi JC and AliG

 

Thank you so much for the advice and support. I was so scared and anxious because I've had the major night sweats (and have them again) and the feeling cold all the time but never the dry hot flushes. Of course I started googling everything again and made myself panic. 

 

My last reduction was about 7% and it was exactly 4 days after that I got these symptoms. I have been doing long holds of about 6 - 8 weeks but I think I probably need to hold here for a while longer. 

 

All my bloods have come back normal and satisfactory and the doctor seems happy. I see him on Thursday as I have a pilinodial cyst and am not sure what will happen but I will ask him at the same time what "satisfactory" means. I'm 45 and do think I have a few hormonal issues but it's really confusing because you don't know what's WD or not. 

 

My health anxiety has definitely got worse which I think is a combination of being frightened by all the side effects of WD and also coming off the drug itself.

 

Thank you again to everyone on this site for making this bearable and being able to turn to someone when I feel like I'm falling apart.

 

Africa

[AliG]

Africa. This is all completely normal in the " withdrawal".  If I had gone to a doctor every time I had a symptom in the last 2.25 yrs , I would be a wreck . I always told myself " It's just withdrawal " , and it was !

I know that now because the symptoms have gone. I'm sure they will with you , too.

Ali

[Junglechicken]

Africa - I think the hardest thing is being able to accept that it's WD, and therefore "nothing to fear".

 

Like you I battle this every day.

 

I think we have a lot of work to do in order to reach Ali's level of WD acceptance. It's also a lot less damaging to our health if we can achieve this mental state.

 

WD symptoms mess with our heads, and our instinct is to question our symptoms all the time, when in fact it is an overactive CNS.

[Africa]

Hi everyone, this has been one hell of a year! Firstly thinking that I had a neurological disease but in actual fact was experiencing withdrawal from Paroxetine and then also later this year being diagnosed with an autoimmune disease of the skin.

 

Then two weeks ago I had the most horrendous allergic reaction to the flu vaccine. Three days after the jab I woke up with the most itchy scalp and when I got up and looked in the mirror, I was completely covered in welts. I took some of my daughters antihistamines which helped but the next evening my lips swelled up and the welts got worse. My husband took me to A&E where I was monitored for a while and given more antihistamines. After seeing the doctor I was told to take two ceterizine a day for 6 weeks! I found that I was getting tremors and also jerking movements with the two ceterizine and read the leaflet in the box. Too my shock I read that ceterizine contained the same active ingredient HYDROCHLORIDE as paroxetine. I am now only taking one a day.

 

It has taken months to get to 5.9mg of Paroxetine and just wondered whether it will take even longer when I get off the ceterizine? I feel a little off balance and have also had some internal tremors. My feet have also been more tingly than usual.

 

I was so hoping to do another reduction in a week but wondered whether I should just stay where I am for now until I can stop the ceterizine? I'm seeing the doctor on Monday as I really don't want to be on it for so long and also I am so worried that I will have even more withdrawal symptoms while coming off the antihistamine?

 

Thank you

[scallywag]

Your CNS (central nervous system) reacted very strongly to the flu vaccination. You would be wise to delay any changes with your paroxetine dose until you are

 

Please don't worry about hydrocholoride part of the ceterizine (antihistamine medication).  HCl (hydrochloride) is commonly used to formulate medications. 

[brassmonkey]

Most medications are manufactured by adding a tiny bit of hydrochloric acid (same as stomach acid) to the pure raw ingredient.  This does two things: 1. it makes the ingredient easier to make, handle and mix with fillers, so we get higher quality pills. and 2. it makes it easier for the medication to dissolve when we swallow it, so we get better availability of the raw ingredient.  The amount of acid is so tiny it has no effect on the body.  You would get thousands of times more acid in a drop of lemon juice then from taking your medication. Any reaction you get would be from the main ingredient and not the HCL.

[Africa]

Thank you so much for this information scallywag and Brassmonkey! I was in such a state about it and thought it was like taking extra Paroxetine. I'm seeing the doctor tomorrow and will ask him whether I could start decreasing the antihistamine.

 

I was eager to do another 10% reduction of the Paroxetine but I think I will wait another few weeks.

 

Thank you so much again for putting my mind at rest.

[Africa]

Hi, I have decided I want to stop the antihistamine ceterizine after having an allergy to the flu vccination. I have taken half the tablet for two days and a quarter of the tablet tonight. Does anyone know whether you are meant to taper off an antihistamine or if I can just stop. 

 

Thank you

[grandmaD]

Hi Africa, sorry this is a bit off topic, but I was trying to find your journal - is this it???  I remembered you posted in my journal about the pins and needles, etc and was wondering have you still got it, got worse or improved?

 

As for your post, I have no clue about your question! but I do taper them.  I try not to be on anything long-term so I take them for a few days and then every 2nd day and then every 3rd or 4th, but I'm probably paranoid now about all drugs!  I don't even know if I have hayfever.  Hubby has it bad, runny nose, sneezing, mucous down throat and all that, but I have no symptoms, just pressure heads which I get from w/d but decided to try the anti-histamines anyway and they did help for those 3 days I took them.  I went off for 2 days and have the head pressure again so took another one today.  I just never know, really!

[Africa]

Hi grandmaD

 

It's so lovely to hear from you. Yes this is my thread.

 

The pins and needles have got a lot better but I still feel them in my feet quite a bit. I was tapering very slowly when WD hit me so I am going even slower now. I see you are doing the same. When I saw the neurologist, I was told that I could still get pins and needles on and off for a while especially because I'm still on the Paroxetine/Paxil.

 

I have started tapering the antihistamine and I am also paranoid about any type of medicine. Apparently the head pressure is common in WD and I have also experienced it.

 

How are you now? I see you're on 3.5mg which is a hug achievement!

[grandmaD]

Well, I'm glad to find your journal at last!  I posted some things yesterday I thought were yours, and couldn't find them today (also forgot to follow the thread).  Anyway, I found one of them eventually but it wasn't a post by you!  I have yet to start reading your journal, but I see from your thread you are also on Paxil.  Like many of us you mixed your doses and so on in an effort to get off!  The good thing is you have found the best way now and I wish you every success.  I see like me, you have to wait for 8 weeks each time.  It can get so frustrating, the length of time it takes and I look forward to the day EVERYONE HERE has arrived!

 

I'm glad your tingling is a bit better.  Where do you get it?  Did you have it when you were on Paxil, because that's when mine started.  It goes from mild to severe and I think that depends on the stress levels in my body.  I think I may have come to the same conclusion as the Neurologist, that it will be with me a long time to come..

 

I am back on the anti-histamine and will stay on it a week this time before going to every 2nd day for a week.  So far I have noticed an improvement in my head, not complete, but much better.  At least I can now get on here and read a bit more now and find people's stuff!  Were you on it for hayfever season?  Sorry, not up to seasons in England vs Australia!

 

I am actually surprised myself when I see where I'm at.  Especially since I have had to hold for the last 3 years for 6months each time.  I guess it just proves slow and steady does work in the long run, but by WHAT A LONG RUN!  I get so fed up at times as I'm sure you do.

 

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.  The other thing I noticed yesterday was an improvement in the muscle pain and today my walk was easier due that being even more improved.  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.  Thanks for asking, I think I will post this in my journal.

 

I hope you have a better day today!