Carmie: accidently doubling up on Seroquel one day while tapering

[Onmyway]

6 hours ago, Carmie said:

Thanks for your prompt reply Onmyway, I really appreciate it, I’m such a mess and so scared. 
 

Concerned it could be the start of M.S. or some other autoimmune disease, because once you have one you can get others. Or is it the meds? Doctors don’t have answers and I’m barely functional now. The CFS is debilitating and now the struggling to breathe and all these horrific neurological symptoms. I’m really, really scared. The nerve pain is awful. It feels like my spine is really inflamed, can’t sleep, can’t rest and no one can help me. 
 

Just lying here in bed petrified. Can’t call the ambulance again as the hospital couldn’t help me. Feeling very lost. 
 

Sending love🧡

Not surprisingly I thought I had MS when I had some strange symptoms as well. Withdrawal caused neurological symptoms for me - mostly tingling (left side of the body only), and numbness but also burning (usually feet). Today I have face burning. I learned to usually wait a few days/weeks to see whether things would go away before worrying. Usually they go away on your own.

 

What you are going through is so awful and I am so sorry that the doctors are not helping. Are you able to take any painkillers like aspirin/ibuprofen? 

 

I am keeping you in my thoughts, 

OMW

[Carmie]

Dear @direstraits @Oaktree1 @Onmyway

 

Thanks for all your care and concern. I’m just lying on my bed barely functional and in nerve pain. When you go to the hospital they just make sure what you have isn’t life threatening and if it isn’t they just send you home. I’ve made an appointment with a local doctor, but can’t come in until tomorrow. My doctor at the clinic is booked out for the next week so I just booked in with another one. 
 

Every time I go to a general gp they are never much help. 
 

I can’t take anti inflammatories Onmyway because they give me severe stomach pain. Painkillers don’t work as I have a tolerance to them. I’m just lying here on my bed really scared. 
 

My friends keep contacting me, but there’s nothing they can do. My spine feels so inflamed. 😢😢😢 Maybe it will eventually go by itself, maybe not??? Too many maybes and never any answers.

 

Sending you all hugs and love for your kindness n generosity towards me🤗🧡

[Carmie]

Well I went to a local GP because the hospital wanted me to follow up the visit, but I knew they wouldn’t be any help at all.
 

Of all things, they wanted me to take lyrica for the nerve pain in my back. All I need is Akathisia again, lyrica can induce Akathisia. That on top of the Seroquel will spell absolute disaster. I just have to taper a bit too fast and I get Akathisia. I took the script but I’m not filling it and I’m not taking it. 
 

I’ll just put up with the nerve pain instead. Suffering never ends. I hope it’s temporary, I don’t know what the nerve pain is from. It’s different to my normal withdrawal symptoms. It feels like my spine is really inflamed. 
 

One day at a time does it, sending much love to all🧡

[Carmie]

Well, despite all I think I’m going to write a gratitude list. Here goes: 

 

1. I’m grateful that I got a really lovely doctor at the hospital. He couldn’t really help me, but he was so kind and compassionate and really listened. He didn’t dismiss me. We even discussed his mother’s health issues. I’m grateful for kind and caring people.

 

2. Again, today, even though I went to the local GP clinic and I’m no closer to a solution, I found out that the doctor I saw also does acupuncture and it doesn’t cost a lot as a large part of it is covered by Medicare. It’s only about $25 Australian if you’re on a disability pension like me. I may go and see her at some stage. I do have private health insurance too. 
 

My regular GP was all booked out this week, so I got this different one. I like my regular GP better because he really listens even though he doesn’t understand everything I’m going through, but I’m glad I found this acupuncturist. I’m definitely not taking the lyrica she prescribed though. That would be absolute disaster. 
 

3. A lovely friend drove me all the way over the other end of the city to my natural therapist last week. It was very kind of her. She was going on a camping holiday the following day, so that was especially kind as she would have had a lot to organise. She sent me a beautiful photo of a sunrise at the beach this morning. I loooooove the beach!!

 

4. Another gorgeous friend is taking me to see the naturopath this week too. I’m grateful for all the kindness shown to me. 
 

5. I’ve had no appetite today and I just realised I cooked something ages ago and haven’t eaten it yet. I’m grateful for food. Let’s see if I can stomach it. I forgot all about eating. I do intermittent fasting though a lot of the time though, I must do some 24 hour fasts again too. It gives my body a rest and hopefully helps with the inflammation.
 

Recently I’ve been doing quite a few four hour eating windows. I don’t eat until lunch time anyway, and then I just stopped eating early afternoon. Funnily I wasn’t even hungry at night. I’m usually snacky in the evening, but I hate breakfast, so skipping breakfast is never a problem. I don’t even get hungry until lunch time or later.

 

6….. Okay, seeing I was writing about food I thought I’d better go and eat my food. Having veggies, salad and salmon. Eating while writing this. Still have no appetite, one’s stomach gets all wound up when one has severe stress. I guess we all go one way or another, either we don’t feel like eating or we emotionally eat. I’m on an autoimmune diet so if I do emotionally eat it’s usually just extra fruit. I don’t have any fruit, I don’t think, maybe an apple, not sure. There may be one in the crisper still.
 

Sometimes I crave fruit and other times my tastebuds find it too sweet. I’m grateful for fruit though, it’s so delicious.

 

7. I’m struggling with my gratitude list as I’m feeling so low, but I’m determined to get to number ten……..let’s see……boy, I can’t think…….I’m grateful I have all the supplements I need.

 

8. I’m grateful for water, love drinking water. I love sparkling mineral water too. Love adding lemon to water too. 
 

9…….Okay, I don’t think I’m stomaching the food. I’m not going to finish it. I’m grateful I got some nutrition though. I ate more than half. 
 

10. I’m grateful that friends keep contacting me to see how I am, to see if I need any help etc etc. Chatted to three different friends who rang this afternoon. I don’t always feel up to talking though, so I don’t always answer the phone. If I don’t answer it I just message my friends and tell them I’m not up to talking, and they’re quite okay with that.

 

I have the best friends. I have friends that care about me for me. I don’t have to be a specific way, I can just be my crazy authentic self. I am so grateful for that. 
 

Well I did it, I got up to ten.

 

I really don’t think I should have eaten anything, my stomach is too tense to digest. Silly idea. Anyway, if my stomach gets this tense again I’ve learnt my lessen. I can use it as a 24 hour fast. I used to do 24 hour fasts once a week. It’s good for me, it gives my body a rest and  helps with inflammation. 
 

Take care all you beautiful people on here who are also struggling. Much love to you all💛

 

[hayduke]

Hugs, Carmie.  Sorry you are still in such discomfort.  Your gratitude lists are such a good example, I have even found myself doing them out loud on hard days and they always help!

 

So busy here, sorry I haven't been on line as much lately.

 

Hope you are finding ways to relax and a bit more ease here and there.

[Carmie]

15 hours ago, hayduke said:

Hugs, Carmie.  Sorry you are still in such discomfort.  Your gratitude lists are such a good example, I have even found myself doing them out loud on hard days and they always help!

 

So busy here, sorry I haven't been on line as much lately.

 

Hope you are finding ways to relax and a bit more ease here and there.

Thanks for the hugs Hayduke, 

 

Yes, I love looking at things I’m grateful for. It’s been another scary day, my vision went blurry for quite some time this morning and I woke up to my spine being really inflamed and the nerves doing weird and wonderful things again. As I have no answers it’s all really overwhelming. It feels more than just the meds. 
 

My brain fog is too severe to write a gratitude list and I’m in a somewhat state of fear again, but I want to mention one thing I’m grateful for today. My friends have been messaging me this morning, I’m not up to speaking to anyone on the phone, but the messages have helped me to cope. I’m so grateful. 
 

I haven’t been able to eat anything today, my stomach is in such turmoil. I might just throw it up, who knows? I’ve been nauseas too. I ate a teeny tiny bit of tinned salmon so I could take a supplement that needs to be taken along with some fat to absorb it. I’m not sure if I ate enough to absorb it, it was curcumin. I need to take it to try and help with inflammation. I can’t take black pepper which usually helps it absorb, so I need something with a little fat instead. Salmon has good ol’ omega threes. I haven’t been able to take my other supplements today: magnesium, iodine, Serrapeptase, Nattokinese. Vitamin K, lysine, zinc, vitamin E and C and milk thistle. My stomach feels like it’s gated and doesn’t want to let anything in. Anything I take probably won’t digest and I really don’t feel like throwing up on top of everything else. 

Okay, just going to try and chill as best I can for the rest of the day. An hour or a minute at a time does it. 
 

Sending hugs🤗

[hayduke]

Sounds like your body knows it wants to fast.  That can really help inflammation, rest the gut, restore flora etc

 

Double hugs

[hayduke]

Lemon juice in the a.m wakes up the liver, electrolytes in drinking water help (i use 1tsp lite salt (half kcl half nacl) and 1 tsp bicarb of soda per 2l water)

[JackieDecides]

I'm sorry you are having so much pain and I really admire the fact that you can still focus on gratitude. I hope things improve soon. ❤️

[ShiningLight]

Thinking of you, Carmie. So sorry that you are suffering so much. It is such an awful feeling to feel like there's no real help.

[Oaktree1]

Hi Carmie

 

I was wondering how you were?

[Carmie]

@hayduke @JackieDecides @ShiningLight  @Oaktree1

 

Hi beautiful people, I’m so extremely sick, I’m barely functional and I’m struggling to think. 
 

I’ve ended up with a ton more symptoms like chronic nausea, stiff neck and visual problems etc etc. Still got the nerve thing happening in my spine and some migrating pain here and there. 
 

My natural therapist thinks I might have Lyme disease. Doctors in Australia won’t diagnose or treat Lyme disease. It’s the good old medical gaslighting like we get with our withdrawal symptoms. I’ve watched documentaries on Australians with Lyme disease that have never travelled overseas. They finally travelled there to get some answers and Lyme came up. 
 

I’ll just have to keep up my weekly appointments with my natural therapist. He uses a rife machine which can break down the biofilm of pathogens, but with Lyme disease the pathogen is really hard to kill. It hides and it can take a very, very long time to kill. It’s already affecting my brain and spine. I have a portable rife machine at home but it’s not as powerful as the plasma one he’s got. Some people can take years to get on top of Lyme.
 

I think I’m herxing too from killing things and that’s why I can barely move at the moment. I’m so extremely sick. 

 

Sending much love🧡

[Longroadhome]

@Carmie

 

Im so sorry you’re now going through additional health concerns. It must be very worrying, especially when you can’t get a diagnosis. 

In times like this it’s good to remember that nothing stays the same. 

 

After every winter comes spring, after every storm there is a blue sky, after every struggle you gain strength..  

 

Keep going and one day soon the cloud will disappear and the sun will shine once more..🌤 

[hayduke]

*hugs* Carmie

[JackieDecides]

On 10/1/2022 at 6:50 PM, Carmie said:

I’m so extremely sick, I’m barely functional and I’m struggling to think. 

I'm so sorry, Carmie 🤗

[Oaktree1]

Carmie

 

I am sorry you are going through such awful suffering...I hope you find some relief from it soon.

 

Oaktree

[Carmie]

On 10/2/2022 at 3:40 PM, Longroadhome said:

@Carmie

 

Im so sorry you’re now going through additional health concerns. It must be very worrying, especially when you can’t get a diagnosis. 

In times like this it’s good to remember that nothing stays the same. 

 

After every winter comes spring, after every storm there is a blue sky, after every struggle you gain strength..  

 

Keep going and one day soon the cloud will disappear and the sun will shine once more..🌤 

 

On 10/2/2022 at 9:33 PM, hayduke said:

*hugs* Carmie

 

On 10/5/2022 at 12:54 PM, JackieDecides said:

I'm so sorry, Carmie 🤗

 

On 10/9/2022 at 4:48 AM, Oaktree1 said:

Carmie

 

I am sorry you are going through such awful suffering...I hope you find some relief from it soon.

 

Oaktree

Hi there all you lovely people, 

 

Thanks for popping over. I hope you’re all doing as best you can. I still don’t know what’s wrong with me. My natural therapist was saying today because I’ve had Cytomegalovirus in the past, it can reside in your spine and cause nerve symptoms too. I googled it and cytomegalovirus can cause myelitis.
 

So, these symptoms could be caused by a virus or Lyme or maybe they are the start of something else autoimmune. Who knows? So what I’m doing at the moment is just continuing to try and put whatever viruses I have in my body into remission and kill any bacteria, parasites etc. It’s a very long and slow process. 
 

Anyway, thought I’d write a gratitude list as it feels like I haven’t done one in a million years. Here goes:

 

1. A friend took me to my appointment at the other end of the city today. The clinic is not far from the ocean so we stopped near the water beforehand. The ocean makes me so happy.
 

A fortnight ago when this friend took me we went to the water beforehand too. It’s the first time in a year that I was near the ocean and it made me all teary. The beach is my happy place. Because of my lungs I haven’t really been anywhere except medical and health appointments. I still wear a mask indoors and in cars. 
 

2. The sea air!!! What a wonderful smell the sea air is and how amazing is the sea breeze. It was extra windy today though while lying on a fixed wooden banana lounge under a tree overlooking the water. When we moved to another spot it wasn’t quite as windy. I was imagining myself just reading and writing and chilling for the day in the spot we were at. It was such a relaxing spot. 
 

3. I have plenty of food. I just had some yummy veggies and salmon. I had 24/7 nausea a few weeks ago that lasted for a week or so and could barely eat. It’s gone for now. Yay! 
 

4. I’m so brain dead trying to think of things. I just remembered I’ve done two 0.05mg drops in my meds that I haven’t put into my signature yet. It’s still going to take me a million years to get off these meds but small wins are small wins. I’ll have to write the drops in after I finish with this list. 
 

5. Saw my husband yesterday, a support worker brought him around. We just chilled near the bike track around the corner from my place. It’s so lovely and green. 
 

6. I got two letters from overseas friends, have been too braindead and sick to read them properly as yet, but look forward to reading them when my brain lets me. 
 

7. Got a beautiful bookmark from a friend. I love reading when my brain lets me. 
 

8. I’ve been having daily epsom salt baths. I take a book in with me but don’t always manage to read much. I actually did FasterEFT while in the tub yesterday. Released some emotions. My nervous system was so shot from these meds and it was hard to relax so I had to do something to distract myself. At least I’m doing stuff that’s beneficial for me while the Epsom salts are doing their thing. 
 

A natural practitioner I know has been in those float tubs where they put in a million tons of Epsom salts. I couldn’t do that because those places use chemicals to clean and sterilise their tubs and my lungs wouldn’t tolerate that. Maybe I should go to the Dead Sea and float.😁

 

9. Okay, okay, my brain is leaving the planet……….Oh, yes, I’m seeing friends via Zoom tonight. 
 

10. Just ordered some more wool. I find the rhythmic movement of knitting a great distraction when my nervous system is shot from these meds. I’m not making anything in particular, the knitting itself is therapeutic. 
 

Well, I managed to get through my gratitude list. I’m so zonked, just going to crash for a bit now. Killing pathogens knocks you around, especially when you have CFS. As well as Epsom salt baths I do daily dry skin brushing and also use a leg air massager to help with lymphatic drainage. 
 

I better put my last couple of drops into my signature before I forget. I just have to look at my calendar first. 
 

A day at a time does it, even a minute at a time. 
 

Sending hugs to all🤗🤗🤗

[ShiningLight]

Thinking of you and wishing you relief. 

 

Glad you didn't take the Lyrica!!! 🤪

[Oaktree1]

Hi Carmie

 

Good on you for being able to do a gratitude list and see the positives in spite of everything you are going through - you're a real example to me.  I hope things even out for you soon.  I would love to be able to sew or knit but I can't even put on a cushion cover straight never mind sewing - I envy you big time there.

 

Oaktree

[Oaktree1]

Hi Carmie,

 

I hope that you are closer to understanding the source of the current health issues you are having and hope you are getting closer to some relief.  

 

Oaktree

[Carmie]

On 10/15/2022 at 10:29 AM, ShiningLight said:

Thinking of you and wishing you relief. 

 

Glad you didn't take the Lyrica!!! 🤪

 

On 10/17/2022 at 2:11 AM, Oaktree1 said:

Hi Carmie

 

Good on you for being able to do a gratitude list and see the positives in spite of everything you are going through - you're a real example to me.  I hope things even out for you soon.  I would love to be able to sew or knit but I can't even put on a cushion cover straight never mind sewing - I envy you big time there.

 

Oaktree

Hi Shininglight and Oaktree,

 

Thanks so much for your messages. My iPad died and I can’t afford to get a new one at the moment as my medical and health expenses cost a fortune. It’s hard to do it on a phone.

 

I’m really struggling to breathe every day still and I still don’t know what all these new symptoms are from. I’m not coping too well, though I still try to look at what I’m grateful for. I’m too braindead to write a gratitude list but I’m still grateful for things.

 

Shed lots of tears today though. I feel claustrophobic.

 

Sending much love🧡

[Phoenixmama]

@Carmie sending you hugs and love ❤️🌞🙏

[Carmie]

6 hours ago, Phoenixmama said:

@Carmie sending you hugs and love ❤️🌞🙏

Thanks Phoenixmama,

I hope that you’re having a nice day. I feel awful, but I’m going to write a gratitude list nevertheless. Here goes:

 

1. I’ve got the breeze of my fan on me which makes me comfortable. It’s going to be 33 degrees today, though it’s not that hot indoors at the moment.

 

2. My friends have been messaging me and seeing how I’m doing. I’m not a big fan of the “ How are you? “ question though because I never know what to say. I’m always sick and hate to sound like I’m always complaining. 

I haven’t really felt like chatting to people on the phone much, so YAY for messaging🎉🎉I don’t like to be a downer so when I’m feeling miserable I don’t feel like chatting.

 

3. I’ve got plenty of food and home delivery is fabulous!!

 

4. Got a couple of nice tops online. I needed some tops that didn’t have patterns on them so they can go with the skirts with patterns on. I love boho clothing. Long maxi skirts and dresses, lots of crochet, flowy tops etc.

 

I got three tops in the same style, just different colours. You know how when you really see a style that you love and then you don’t get it, afterwards when it’s gone you’re like: “ I wish I had gotten that. “ Anyway, I now have three😁

 

5. We are in a Covid wave again so I’m in isolation again, but I went out a couple of times a few weeks back. Went near the water with my husband and his support worker. It’s so risky for me being around people as this particular carer is positive for Covid today. I did enjoy being near the water.🌊🌊

 

Covid might not be serious for a lot of people now but I was told if I catch any virus it will be ten times worse for me. Thanks!😁 Anyway, I’m grateful that I got out and about a couple of times.

 

6. I’m grateful for my friends who take me to medical and health appointments. I had a hospital and dentist appointment this week but can’t risk going there due to the wave at the moment. That being said, I was very grateful that two different friends were going to take me.

 

7. I’m grateful for crosswords. Been doing a lot of those recently for distraction.

 

8. I’m grateful for text as and pencils. I’ve been prettying up some envelopes.

 

9. I’m grateful for Netflix and Disney. Good old tv shows where you can do marathons. Am watching Castle at the moment, have never seen it before but a friend recommended it and it’s pretty good. My favourite series that is on Disney is White Collar. Both these shows have humour in them which I love. I love a bit of quirkiness.

 

10. Trying to think of one last one…. I’m feeling so miserable and it’s hard…… Managed to do a bit of decluttering yesterday. 

 

Take care🧡

[Onmyway]

@Carmie,

It's so great to see you back. I'm very sorry that you're still struggling with health issues but also amazed at your resilience and determination. Glad that you managed to get out and to the water! 

 

I'm also very grateful for old TV show marathons and find Castle quite enjoyable. Other funny ones I can recommend - The Mysteries of Laura (police procedural but fun), you might like the Mentalist as well.

 

Sending you big hugs!

 

OMW 

[ShiningLight]

Carmie,

 

Sending hope, love, and sustenance to you. I hope your breathing starts to improve.

[direstraits]

I'm sorry you're going through this 😔

Much love and prayers for healing.❤️

[Oaktree1]

Hi Carmie

 

You're an example to me, that's all I can say.  I am going to start doing gratitude lists too.

It is wonderful that you have all these friends that really care about you and your husband.  You must be a wonderful person.  I hope you find relief soon.

 

Oaktree1

[Rosetta]

Thinking of you, Carmie.  Sorry to hear about your iPad.  So, no long note here, but please know I’m sending good vibes, and I too, appreciate your gratitude lists.  Take care R

[Onmyway]

Dear @Carmie, 

I was thinking of you today and hoping that you have some respite from the breathing issues. I hope that you are experiencing some peace and fun. 

Thinking of you and sending you hugs from across oceans, 

OMW

[Oaktree1]

Hi Carmie

 

just checking to see how you are doing…hope things have improved a bit for you

 

Oaktree1

[Carmie]

On 11/15/2022 at 12:18 PM, Onmyway said:

@Carmie,

It's so great to see you back. I'm very sorry that you're still struggling with health issues but also amazed at your resilience and determination. Glad that you managed to get out and to the water! 

 

I'm also very grateful for old TV show marathons and find Castle quite enjoyable. Other funny ones I can recommend - The Mysteries of Laura (police procedural but fun), you might like the Mentalist as well.

 

Sending you big hugs!

 

OMW 

 

On 11/15/2022 at 3:03 PM, ShiningLight said:

Carmie,

 

Sending hope, love, and sustenance to you. I hope your breathing starts to improve.

 

On 11/16/2022 at 6:36 AM, Oaktree1 said:

Hi Carmie

 

You're an example to me, that's all I can say.  I am going to start doing gratitude lists too.

It is wonderful that you have all these friends that really care about you and your husband.  You must be a wonderful person.  I hope you find relief soon.

 

Oaktree1

 

On 11/27/2022 at 3:52 AM, Rosetta said:

Thinking of you, Carmie.  Sorry to hear about your iPad.  So, no long note here, but please know I’m sending good vibes, and I too, appreciate your gratitude lists.  Take care R

 

On 12/4/2022 at 8:29 PM, Oaktree1 said:

Hi Carmie

 

just checking to see how you are doing…hope things have improved a bit for you

 

Oaktree1

Hi everyone,

Thanks for dropping by. I’m not doing good. My breathing is so bad, it’s been 15 months or so since the vax and I’m struggling to breathe every day. I just cry all the time and try and survive another day. Just existing. I have COPD from an injury and my immune system attacks my lungs and this vax has really done some damage!!!! It’s caused such a flare which doesn’t want to end. I’m losing hope, and no amount of people saying it will settle makes me feel any better, not one iota. I’ve been bringing up so much phlegm. 

 

I was having breathing problems before the vax, but I had reprieve too, now it’s just survival. I’m not living.
 

My bronchial tubes are so inflamed and constricted that I feel like I’m suffocating. My blood oxygen levels are fine as my alveolar aren’t damaged. I have chronic bronchitis, there’s no cure, but I just want this flare to end!!!! Before the vax I was okay for a month and a half or so.

 

A friend of mine, a nurse, said I should go to the hospital and try and get steroids while being monitored. Steroids would be absolute hell when going through withdrawals. I’ve had such severe Akathisia in the past and they could trigger it again or other severe withdrawal symptoms. What other options are there? People on this site have taken  steroids and then really paid for it. I can’t take any inflammatory meds either as I get a severe reaction to them, ended up in hospital once as I had such severe stomach pain that I was screaming.
 

I’m at a loss😥

 

I better report that I’ve done two drops that I haven’t put in my signature as yet. I’m at 3.55mg from 3.65 now. Withdrawals haven’t been too bad as my drops are small and I’m nearly holding for two months every time. There are days though when my nerves are completely shot though from these meds. 
 

I’m just so sad and claustrophobic that I can’t make myself write a gratitude list. Friends popped around the other day, they stayed outside with their masks on. I was just bawling the whole time and had to end up excusing myself. Can’t cope with people, can’t cope with anything at the moment. One of my friends bought me a T-shirt from the Keith Urban concert. I gave her two tickets and she went with her husband. I bought the tickets a few years ago. I’ve seen him before. 

 

Hope you’re all doing okay, sending hugs🤗🤗

[Carmie]

On 11/16/2022 at 5:20 AM, direstraits said:

I'm sorry you're going through this 😔

Much love and prayers for healing.❤️

Sorry direstraits,

 

I just noticed I didn’t quote you, but the message above was for you as well. I’m such a mess, I don’t know what I’m doing🧡

 

[Onmyway]

Hi @Carmie, so happy to see you here and so sorry that you're still suffering. Not being able to breathe sounds horrendous. I know steroids can be bad even when not in withdrawal but I wonder if a low dose would be worth the risk. I remember from my asthma days that if you used a spacer more of the vapor ended in your lungs than in your mouth so side effects could be lower. I'm glad that your oxygenation is adequate but breathing issues are awful 😞

 

Would you consider taking a very long break from tapering - months/years - so that you can focus on the breathing issues? Maybe taking a steroid then would be less risky? 

 

I'm sorry I don't have a solution and I don't know enough about the disease to provide practical advice but feels like you are between a rock and a hard place and I wonder if a different choice may help.

 

Sending you hugs and thinking of you!

OMW

 

I know what you're going through is not the same at all but years ago I benefited a lot from an MBSR course - it very surprisingly helped my asthma. Not sure if they have free online ones, I took it through my doctor.

 

 

[Carmie]

1 hour ago, Onmyway said:

Hi @Carmie, so happy to see you here and so sorry that you're still suffering. Not being able to breathe sounds horrendous. I know steroids can be bad even when not in withdrawal but I wonder if a low dose would be worth the risk. I remember from my asthma days that if you used a spacer more of the vapor ended in your lungs than in your mouth so side effects could be lower. I'm glad that your oxygenation is adequate but breathing issues are awful 😞

 

Would you consider taking a very long break from tapering - months/years - so that you can focus on the breathing issues? Maybe taking a steroid then would be less risky? 

 

I'm sorry I don't have a solution and I don't know enough about the disease to provide practical advice but feels like you are between a rock and a hard place and I wonder if a different choice may help.

 

Sending you hugs and thinking of you!

OMW

 

I know what you're going through is not the same at all but years ago I benefited a lot from an MBSR course - it very surprisingly helped my asthma. Not sure if they have free online ones, I took it through my doctor.

 

 

Hi Onmyway,

 

Thanks for your very kind message. I have tried steroid inhalers ( but not steroid tablets ) and non steroid ones but nothing worked. I saw someone on this site didn’t have problems with steroid inhalers as they mainly end up in your lungs so I gave it a go, but to no avail. 

 

Having had akathisia I can’t risk steroid tablets as I don’t want to be suicidal again. I’m scared. Just being on Seroquel and adding something like steroid medication could cause major problems. I read of someone on this site that had been off their meds I think over a year and a half and were doing okay. After they took steroid medication they went into severe withdrawals again and didn’t feel like living and they had a number of kids. 
 

Thank you again for your kind concern🧡

[Cheeky]

5 hours ago, Carmie said:

 

 

 

 

Hi everyone,

Thanks for dropping by. I’m not doing good. My breathing is so bad, it’s been 15 months or so since the vax and I’m struggling to breathe every day. I just cry all the time and try and survive another day. Just existing. I have COPD from an injury and my immune system attacks my lungs and this vax has really done some damage!!!! It’s caused such a flare which doesn’t want to end. I’m losing hope, and no amount of people saying it will settle makes me feel any better, not one iota. I’ve been bringing up so much phlegm. 

 

I was having breathing problems before the vax, but I had reprieve too, now it’s just survival. I’m not living.
 

My bronchial tubes are so inflamed and constricted that I feel like I’m suffocating. My blood oxygen levels are fine as my alveolar aren’t damaged. I have chronic bronchitis, there’s no cure, but I just want this flare to end!!!! Before the vax I was okay for a month and a half or so.

 

A friend of mine, a nurse, said I should go to the hospital and try and get steroids while being monitored. Steroids would be absolute hell when going through withdrawals. I’ve had such severe Akathisia in the past and they could trigger it again or other severe withdrawal symptoms. What other options are there? People on this site have taken  steroids and then really paid for it. I can’t take any inflammatory meds either as I get a severe reaction to them, ended up in hospital once as I had such severe stomach pain that I was screaming.
 

I’m at a loss😥

 

I better report that I’ve done two drops that I haven’t put in my signature as yet. I’m at 3.55mg from 3.65 now. Withdrawals haven’t been too bad as my drops are small and I’m nearly holding for two months every time. There are days though when my nerves are completely shot though from these meds. 
 

I’m just so sad and claustrophobic that I can’t make myself write a gratitude list. Friends popped around the other day, they stayed outside with their masks on. I was just bawling the whole time and had to end up excusing myself. Can’t cope with people, can’t cope with anything at the moment. One of my friends bought me a T-shirt from the Keith Urban concert. I gave her two tickets and she went with her husband. I bought the tickets a few years ago. I’ve seen him before. 

 

Hope you’re all doing okay, sending hugs🤗🤗

Carnie I’m just so saddened to read your update . Knowing that you’re struggling like this breaks my heart . I don’t know what to say to make you feel better as I’m sure it’s not going to make a difference anyway 
You know Im from Sydney and if you ever wanted to talk to me on the phone or FaceTime , I would be happy to give you support and be there for you . I’m so sorry you going through this and I will pray for your healing . 
You’re one tuff Aussie ❤️

[FireflyFyte]

Carmie, I have read through your thread and I am so sorry that you are struggling so much right now. You seem to be a wonderful person, with a fantastic attitude (I really appreciate your gratitude lists), and hope that you start to feel better soon.