Pollyjay: need support

[Pollyjay]

On 4/20/2022 at 12:04 PM, mstimc said:

Polly, what you're experiencing is perfectly normal in recovery.  Its the familiar "windows and waves" pattern.  The good news is you recognize and appreciate the windows.  Waves will continue, but you'll find they become decreasingly intense and you'll be able to handle them better.  Stay focused on the behaviors and thought patterns that support your windows, and you'll find the fear of a wave will start to recede.  You're doing great! 

Thank you for your encouragement mstimc!  It's so much appreciated. And thanks for telling me about your woodworking. I love the craftsman style. I hope you can get your tool kit built up again. 

 

I'm looking forward to starting some projects when I get a good window. I'd like to build -and possibly sell, some old fashioned model pond boats. I'll need my husband to cut the steel keels though. My dad used to build them when I was small. I have one here that needs some restoration. I bought fabric to cut and sew new sails. Also the rings and eyelets to attach them. Hoping there are still kids out there that would appreciate working with wind power rather than remote control! 

[mstimc]

1 minute ago, Pollyjay said:

Hoping there are still kids out there that would appreciate working with wind power rather than remote control! 

Well I'm a kid at heart and would love one! 

[Pollyjay]

FeralCatMan, thank you for all your kind words of support. And for your service also.  It's interesting that you mentioned the military and feeling the need to consider the worst outcomes. I was thinking the exact same thing! Yes, I was military too (army medic) Tats how my husband and I met. He stayed in till retirement but I got out to raise and homeschool our son.

 

I get so angry at myself for getting into this anxious state. I keep thinking of all the stuff we had to deal with, on our bellies surrounded by gunfire, driving in convoys not  knowing what might be around the next bend,  and then all the years my husband was deployed in war zones and it was just me and our little boy alone at home. There were so many times I could have fallen to pieces but never did.- thank the Lord! But when it comes to the loss of family members and our son moving away to start his first job I go into nose dive!

 

Lately, everyone I talk to is complaining about the pollen! It seems to be a particularly bad year. I can understand your increased anxiety if you are being affected in so many ways by it. I'm so sorry that you are struggling and in such a horrible way right now. I have put you on my prayer list. Unless you've experienced this "stuff" (trying not to use bad words!) it's almost impossible to understand what people are going through. It's so debilitating. You have my deepest empathy! 

 

An acquaintance was here a couple of days ago. She's a good person and means well but she tends to "know everything about everything" and she spent the whole time giving me advice on panic attacks and anxiety and grief and how to handle it all. She'd hear d this on NPR and that on NPR and you just have to switch your thoughts to something else. I couldn't get a word in. I was sitting there like a naughty little girl being reprimanded. All I could manage was to nod and say "maybe I should try that' Well I guess you're right. By the time she left I was shaking like a leaf. I felt so inferior. This lady has had her share of losses but she's never spiraled into anxiety or panic. I'm glad for her! I wouldn't with it on my worst enemy.

 

 I'll be heading over to your page later this evening FeralCatMan Right now I'm waiting to meet online with my therapist so need to get off here for now. 

 

Polly

[FeralCatman]

I did not know you were a veteran as well so thank you so much for your service. 😉✌️😻😻😻😻

 

I think your acquaintance was just someone talking about something they have never experienced. If you have never experienced what we are going through then there is simply no way to relate or connect. I think they meant well but it doesn't make it easier to sit there and listen to. You really shouldn't have to. I have had people in my life talk to me like that who had never been through it. Then I don't see them for awhile and when I see them again they had actually had an experience with true anxiety or a panic attack and they totally changed their tune and apologized. In any case I am sorry they made you feel like that. It's not what you need right now and you have no need to feel badly about how you are feeling right now. As I said, you seem pretty tough to me to be able to endure all of this living in the middle of nowhere and still maintaining your property and animals so good for you.

 

As for me I was doing alright until I messed with the Allegra again and then went back up only in time for Spring during which, as my therapist just reminded me, makes a wreck out of me every year. Just never this bad. The hard part and the scary part is that this could be withdrawal but it could also be Mast Cell Activation Syndrome (MCAS) or it could be both and I don't know which it is yet and won't know for awhile. The question is, is this withdrawal or an unmasked underlying condition because Seroquel is one of the second line treatments for MCAS due to its antihistamine properties. MCAS can be dangerous so I am actually scared to death right now having been having these reactions and not knowing the source and my immunologist had to go away and there is no backup. I am usually not easily frightened. I was a submariner which is inherently dangerous. I have been in multiple explosions at the power plant I worked at, been in 2 fires, I hike alone at night, walk alone at night, etc. None of that stuff ever scared me as much as my own body is scaring me right now. I live alone and normally am fine with it but now it is very scary. I am also immune deficient and with COVID lurking about having someone come and stay is also scary. Basically right now I am a big ball of fear and it sucks. I talk to a nutritionist tomorrow who specializes in histamine intolerance and food sensitivities and hopefully she can help. I don't get to talk to my ENT doc until next Tuesday but I love this guy to death and if he is able to do anything I know he will.

 

Take care and thank you for your prayers and for responding. I am usually kind of a loner but right now, for the first time in my life, it is not working well for me. It is nice to be in touch with people who understand what it is like to go through this. Kitty Prayers to you and your family 😻

[FeralCatman]

Oh, remember that all of the stuff you go through in the military you train for every day and you know how to deal with it and you have backup and support. There is no training in the world that can prepare you for what we are going through so there is no need to be upset with yourself. I have also been upset with myself sometimes for feeling like this but then I remind myself that I am dealing with many unknowns that there is just no way to prepare for. From what I have read you are stronger than you give yourself credit for.

[Pollyjay]

19 hours ago, FeralCatman said:

I did not know you were a veteran as well so thank you so much for your service. 😉✌️😻😻😻😻

 

I think your acquaintance was just someone talking about something they have never experienced. If you have never experienced what we are going through then there is simply no way to relate or connect. I think they meant well but it doesn't make it easier to sit there and listen to. You really shouldn't have to. I have had people in my life talk to me like that who had never been through it. Then I don't see them for awhile and when I see them again they had actually had an experience with true anxiety or a panic attack and they totally changed their tune and apologized. In any case I am sorry they made you feel like that. It's not what you need right now and you have no need to feel badly about how you are feeling right now. As I said, you seem pretty tough to me to be able to endure all of this living in the middle of nowhere and still maintaining your property and animals so good for you.

 

As for me I was doing alright until I messed with the Allegra again and then went back up only in time for Spring during which, as my therapist just reminded me, makes a wreck out of me every year. Just never this bad. The hard part and the scary part is that this could be withdrawal but it could also be Mast Cell Activation Syndrome (MCAS) or it could be both and I don't know which it is yet and won't know for awhile. The question is, is this withdrawal or an unmasked underlying condition because Seroquel is one of the second line treatments for MCAS due to its antihistamine properties. MCAS can be dangerous so I am actually scared to death right now having been having these reactions and not knowing the source and my immunologist had to go away and there is no backup. I am usually not easily frightened. I was a submariner which is inherently dangerous. I have been in multiple explosions at the power plant I worked at, been in 2 fires, I hike alone at night, walk alone at night, etc. None of that stuff ever scared me as much as my own body is scaring me right now. I live alone and normally am fine with it but now it is very scary. I am also immune deficient and with COVID lurking about having someone come and stay is also scary. Basically right now I am a big ball of fear and it sucks. I talk to a nutritionist tomorrow who specializes in histamine intolerance and food sensitivities and hopefully she can help. I don't get to talk to my ENT doc until next Tuesday but I love this guy to death and if he is able to do anything I know he will.

 

Take care and thank you for your prayers and for responding. I am usually kind of a loner but right now, for the first time in my life, it is not working well for me. It is nice to be in touch with people who understand what it is like to go through this. Kitty Prayers to you and your family 😻

 

Oh I can so much relate to being a loner!! I grew up an only child and have never had a need to be around many people. One or two close friends was always enough for me. When we moved here I was quite content to have just my husband and young son and our animals. Then this comes along and honestly, there was a day last week, while my husband was away in Florida, where I felt so bad I actually thought of driving to our little town to just sit on a bench bawl my eyes out  and cry to strangers "please help me!" I felt so alone and helpless.

 

I find a lot of comfort here on this site. Especially the prayer thread and of course the success stories.. I hope i can 'give back' and  provide some support and comfort to others here. 

[Pollyjay]

Today started out rough. I couldn't stop crying. Spoke to our son last night and he's feeling so depressed and down since he now can't drive. He's having to depend on other people for rides. He's also ruminating on "what else is going to happen to me". And I pick up on all of this even before he tells me. Usually, if I'm having a bad day I find out later that he's been going through some bad times too. It was the same with my mum. If I was upset about something, I could almost guarantee that the phone would ring and she'd be on the other end asking "what's wrong love?" I'd ask "how did you know? She always answered "Well, because I'm your mum!". 

 

It didn't help that my husband has gone back to work. He hasn't worked in months because of being unable to leave me, and then his heart surgery. Even though I coped while he was gone to Florida to help our son, I'm still struggling with him leaving for work. He wont be home until at least 7pm.  With the anhedonia or whatever it is that's keeping me from being able to become interested and absorbed in projects, hours stretch and feel like days. But we really need money coming in again.

 

Riding and training my little horse has been the only thing that's brought a little spark of pleasure, but now I'm having some sciatica pain in my right side. It used to very bad but hasn't bothered me for quite some time. I'm so upset that it's started up again. Probably from riding the horse. So I'm also in tears over that.  There are are a couple of exercises that help. I've been doing those and I'll get some fresh ginger to make ginger tea, which also helps. I just don't want to be unable to ride. It's been so therapeutic this last few weeks, giving me an hour or so of real distraction from the anxiety and tremors.

 

I'm going to go out and plant some seeds in pots. It's finally warming up a little. 

 

 

[mstimc]

4 hours ago, Pollyjay said:

I'm going to go out and plant some seeds in pots. It's finally warming up a little. 

Great idea, Polly!  Taking positive action is a great antidote to anxious thinking. 

 

A lot of what you're feeling is natural. Our son is 1,500 miles away and I worry about him all the time.  And you're adjusting to having your husband going back to work.  Don't be too hard on yourself for having these feelings.  Just because we're in WD, we don't give up our right to have normal ups and downs.  

[FeralCatman]

13 hours ago, mstimc said:

Great idea, Polly!  Taking positive action is a great antidote to anxious thinking. 

 

A lot of what you're feeling is natural. Our son is 1,500 miles away and I worry about him all the time.  And you're adjusting to having your husband going back to work.  Don't be too hard on yourself for having these feelings.  Just because we're in WD, we don't give up our right to have normal ups and downs.  

Well Said.

[FeralCatman]

PollyJay,

 

My day today started out the same. I'm really sorry your son is having such a hard time. I can really relate right now to ruminating about 'what else is going to happen to me'. It's tough not to get into that space when too much starts to happen at once. It sounds like you have a good family though so you have support even if you are home alone.

 

I can really relate to feeling alone and helpless and that's very hard as it is something I am not used to dealing with. I've never been homesick or been one to really miss anyone. I always kind of just ran on my own just fine and being on my own was never a problem but honestly I have thought about going into town and doing the same thing. Maybe it is just time to connect in a way that I never have before. I guess we all get to a point where we need that connection and that is how I feel right now. Alone and helpless and scared and in need of some connection. So, I am glad we connected. From what I can tell so far you and your husband seem like my kind of people.

 

I started the day with a 3 mile walk (brief stops to bawl my eyes out) and then went down into my field with the deer and turkeys and sat and watched the sun come up. I am really sick of repeatedly getting stuck in the house. Things have been bad enough over the last couple of weeks that I actually asked my dad to come up and stay for a few days. He's coming up this afternoon. It's been years since I felt the need to have someone come and be a comfort but I definitely need that right now as what is happening to my body right now is really scary.

 

Take care and reach out any time. We are all here for each other. It's nice to know there are others who understand 😉✌️😻😻😻😻

[Pollyjay]

On 4/22/2022 at 5:21 PM, mstimc said:

Great idea, Polly!  Taking positive action is a great antidote to anxious thinking. 

 

A lot of what you're feeling is natural. Our son is 1,500 miles away and I worry about him all the time.  And you're adjusting to having your husband going back to work.  Don't be too hard on yourself for having these feelings.  Just because we're in WD, we don't give up our right to have normal ups and downs.  

 

Thank you @mstimc. You always manage to put things in a better perspective. I do appreciate your support!

[mstimc]

2 minutes ago, Pollyjay said:

 

Thank you @mstimc. You always manage to put things in a better perspective. I do appreciate your support!

That's why all of us are here--to support and lift each other up!

[Pollyjay]

Just a quick update. Saturday was a wonderful day!!! I worked outside with my husband and was feeling much calmer and able to actually feel some enjoyment. I even sheared a sheep! I felt almost normal and was thinking of all the things I wanted to do. Projects to finish and new ones to start. I'm hanging on to Saturday and praying for more days like that. It's gone down hill a bit since then but at least there's hope.

[mstimc]

5 minutes ago, Pollyjay said:

'm hanging on to Saturday and praying for more days like that. It's gone down hill a bit since then but at least there's hope.

That's a great attitude, Polly! I remember my first window.  We were watching our son play in his junior high jazz band, and the look of pure joy on his face completely wiped out my anxiety.  The window didn't last long--maybe 20 or 30 minutes--but from then on I knew I'd recover eventually. It took time, but whenever I lost hope I'd flash back on that moment--like you, it gave me hope.

[Pollyjay]

1 minute ago, mstimc said:

That's why all of us are here--to support and lift each other up!

 

Thank you!!!

 

Yesterday was just awful. Cried nearly all day. But I forced myself to get another sheep sheared. So that was good.

 

Today I've been filled with anxiety again. I had to drive the 20 miles to our little town to get a prescription refil. I haven't driven for months!!! I usually love to drive but the anxiety had me struggling to get a deep breath. ANyway I went and then I decided to go a step further and go to the dollar store to get more flower seeds and a few more pots. Spent a bit more money than I wanted to. When I got home and out of the truck, I heard a hissing noise and saw the rear tire going down! It must have just happened while driving our dirt road here. Looks like a rock caused it. I'm thanking the Lord that it didn't happen far from home. Husband is working about 30 miles in the other direction and I don't have a cell phone.

 

I've tried to work outside most of the day but the anxiety has been really bad. I don't know why.Just feel scared to death and tremors all day. It's horrible.

 

I made some traditional Welsh Lamb stew and that's what I'm eating right now. And husband just drove in the drive. I'm so glad to see him!

[Pollyjay]

7 minutes ago, mstimc said:

That's a great attitude, Polly! I remember my first window.  We were watching our son play in his junior high jazz band, and the look of pure joy on his face completely wiped out my anxiety.  The window didn't last long--maybe 20 or 30 minutes--but from then on I knew I'd recover eventually. It took time, but whenever I lost hope I'd flash back on that moment--like you, it gave me hope.

 

How are you feeling now? Did you get your normal self back completely?

[mstimc]

 

1 minute ago, Pollyjay said:

 

How are you feeling now? Did you get your normal self back completely?

Yes, but keep in mind it doesn't pay to try to "get back to who you were".  Like all life events, this experience changes us, sometimes for the better.  I'm more empathetic and patient than I was before this.  You can come out of this whoever you want to be!

[Blossom71]

7 hours ago, Pollyjay said:

Saturday was a wonderful day!!! I worked outside with my husband and was feeling much calmer and able to actually feel some enjoyment. I even sheared a sheep! I felt almost normal and was thinking of all the things I wanted to do.

There must have been something in the air on Saturday as I felt like exactly the same. I didn’t get to shear a sheep though unfortunately ☹️
 

That ‘normal’ feeling is wonderful isn't it?  I hope you get some more of those days soon. The anxiety filled days are rough x

[Pollyjay]

8 hours ago, Blossom71 said:

There must have been something in the air on Saturday as I felt like exactly the same. I didn’t get to shear a sheep though unfortunately ☹️
 

That ‘normal’ feeling is wonderful isn't it?  I hope you get some more of those days soon. The anxiety filled days are rough x

Thank you blossom, they really are rough. They tend to feel worse when you've just had a really good day. 

[Mia1]

Hi Pollyjay,

I thought I would come over to you to say hello and read your story. I’m sorry for everything you have been through, it certainly sounds like you have been having a difficult time.  I have a few thoughts I’d like to share with you.

 

 I don’t know if you read my whole thread but I actually went on medication because of significant anxiety and panic related to health OCD. I didn’t understand at the time what was happening or how to stop it and it was so scary. Like you I had absolutely no appetite and lost a lot of weight and couldn’t sleep more than four hours a night if I slept at all. I was in a constant state of panic. This was why I went on medication, because I had no idea how to heal the anxiety and panic and I didn’t want to suffer anymore.

 

Fast forward about twenty years and here I was still taking Klonipin and also amitriptyline to sleep and medical marijuana to also help with anxiety and insomnia. I honestly thought the medical marijuana was completely harmless and a “natural” alternative to cope with stress. I won’t take up your thread with my story but suffice to say that I have never experienced a more horrific withdrawal and it ended up creating all the problems I took it for in the first place, mainly severe anxiety and insomnia. It was acute for three months and then a slow and gradual healing. I do not recommend it to anyone, it’s a complicated drug that is simply not harmless if taken regularly. No judgement if you decide to take it, I just wanted to share with you in case I can spare you pain down the road.

 

 I’m ultimately grateful it happened though because it lead me on this journey to becoming medication free and healing my trauma naturally. It took me some time to get here so like others I definitely advise a lot of patience and self love while you are finding what works best for you.

 

What helped me to heal was acceptance on every level. It took me so long to even understand what that meant to me but learning to accept what you can’t change or control has helped me tremendously. For me, there is no greater teacher and healer than Claire Weekes for panic and anxiety. If you haven’t already check out her book Hope and Help For Your Nerves and listen to some of her videos on YouTube. She talks about acceptance and breaking the habit of anxiety. It took me a little while to fully understand it and practice it but once it clicked I have never had the same relationship with anxiety. I have not had one panic attack or even worried about anything, this is how deeply I have healed. And you can too.

 

 I also recommend a daily meditation practice, it has helped me so much to become aware of my thoughts and thereby make more of a choice what thoughts I was going to believe and follow. You are NOT your thoughts, they are just thoughts. I didn’t understand that before this journey. Meditation helps create some space between you and your thoughts and it also slows down the fight/flight response. But I have to stress that it must be done daily, even just 15 minutes a day, and for a period of time before you feel the full effects of it.

 

So I would urge you to try my suggestions or other suggestions and find what works for you because the answer will never be a pill. It may provide temporary relief but then it will stop working eventually and you will be left with your symptoms. Don’t be afraid of them, they are trying to teach you something. Learn from them and then let them go. Don’t be afraid of intense feelings, even panic. They’re just feelings. Learn how to navigate your feelings and don’t resist them. Remember, whatever you resist persists!!

 

 I see you are a person of faith, as am I, so trust that a power greater than yourself is taking care of everything. That everything that is happening is happening for you and not to you so that you can grow to become the best version of yourself. You are here, you are going to heal and you are not alone, not ever.

 

 I’m here for you, sending you a lot of love and healing energy. Your life is going to be so much better because of this experience and not despite it 💗

[Pollyjay]

On 4/25/2022 at 7:47 PM, mstimc said:

 

Yes, but keep in mind it doesn't pay to try to "get back to who you were".  Like all life events, this experience changes us, sometimes for the better.  I'm more empathetic and patient than I was before this.  You can come out of this whoever you want to be!

Thank you @mstimc Do you have a success story posted here? I'd love to read it. 

 

I know when I got off Paxil in 2012 I felt like a new person. ( even at the lower doses like 6 mg) I was getting up in the morning feeling enthusiastic about what I wanted to do that day. I did worry that once I jumped off it I would be back to having the grief, fear, anxiety and panic that caused me to go on it in the first place, but, and I thank the Lord- that didn't happen.  Life just got better and better. Until October last year. I thought after getting through the paxil  withdrawal I could get through anything.

 

Do you have a success story posted here? 

[Pollyjay]

23 hours ago, Mia1 said:

Hi Pollyjay,

I thought I would come over to you to say hello and read your story. I’m sorry for everything you have been through, it certainly sounds like you have been having a difficult time.  I have a few thoughts I’d like to share with you.

 

 I don’t know if you read my whole thread but I actually went on medication because of significant anxiety and panic related to health OCD. I didn’t understand at the time what was happening or how to stop it and it was so scary. Like you I had absolutely no appetite and lost a lot of weight and couldn’t sleep more than four hours a night if I slept at all. I was in a constant state of panic. This was why I went on medication, because I had no idea how to heal the anxiety and panic and I didn’t want to suffer anymore.

 

Fast forward about twenty years and here I was still taking Klonipin and also amitriptyline to sleep and medical marijuana to also help with anxiety and insomnia. I honestly thought the medical marijuana was completely harmless and a “natural” alternative to cope with stress. I won’t take up your thread with my story but suffice to say that I have never experienced a more horrific withdrawal and it ended up creating all the problems I took it for in the first place, mainly severe anxiety and insomnia. It was acute for three months and then a slow and gradual healing. I do not recommend it to anyone, it’s a complicated drug that is simply not harmless if taken regularly. No judgement if you decide to take it, I just wanted to share with you in case I can spare you pain down the road.

 

 I’m ultimately grateful it happened though because it lead me on this journey to becoming medication free and healing my trauma naturally. It took me some time to get here so like others I definitely advise a lot of patience and self love while you are finding what works best for you.

 

What helped me to heal was acceptance on every level. It took me so long to even understand what that meant to me but learning to accept what you can’t change or control has helped me tremendously. For me, there is no greater teacher and healer than Claire Weekes for panic and anxiety. If you haven’t already check out her book Hope and Help For Your Nerves and listen to some of her videos on YouTube. She talks about acceptance and breaking the habit of anxiety. It took me a little while to fully understand it and practice it but once it clicked I have never had the same relationship with anxiety. I have not had one panic attack or even worried about anything, this is how deeply I have healed. And you can too.

 

 I also recommend a daily meditation practice, it has helped me so much to become aware of my thoughts and thereby make more of a choice what thoughts I was going to believe and follow. You are NOT your thoughts, they are just thoughts. I didn’t understand that before this journey. Meditation helps create some space between you and your thoughts and it also slows down the fight/flight response. But I have to stress that it must be done daily, even just 15 minutes a day, and for a period of time before you feel the full effects of it.

 

So I would urge you to try my suggestions or other suggestions and find what works for you because the answer will never be a pill. It may provide temporary relief but then it will stop working eventually and you will be left with your symptoms. Don’t be afraid of them, they are trying to teach you something. Learn from them and then let them go. Don’t be afraid of intense feelings, even panic. They’re just feelings. Learn how to navigate your feelings and don’t resist them. Remember, whatever you resist persists!!

 

 I see you are a person of faith, as am I, so trust that a power greater than yourself is taking care of everything. That everything that is happening is happening for you and not to you so that you can grow to become the best version of yourself. You are here, you are going to heal and you are not alone, not ever.

 

 I’m here for you, sending you a lot of love and healing energy. Your life is going to be so much better because of this experience and not despite it 💗

 

 @Mia1 Thank you so much for taking the time to write all that for me. Yes, I went to the beginning and read your whole story yesterday! I need to go back and watch some of the videos you posted.

 

I have a very difficult time with the accept and float strategy.

 

Today I'm really struggling again. It's not just the anxiety,- it is pretty bad right now along with the tremors- but I'm having terrible numbness in my hands and fingers! I've had it before, usually if I've been working with my hands a lot. Wood carving especially. But the only real work I've been doing is filling a few planters with potting soil. I have been doing animal chores again which involves carrying buckets of water. It's causing me to be really anxious because the joints of my right index finger are also painfully swollen and stiff. -I think shearing the sheep set that off. I can hardly use my right  hand at the moment! 

 

I'm wondering if it's due to eating so many more carbs than I usually eat. After losing my appetite for three months and getting down to 92 lbs, once it came back a little, I've been trying to get as many calories as possible. Of course that has meant adding bread and other things I didn't normally eat. I'm worried that it's causing neuropathy. I cut out the BOOST drinks and I'm eating more low carb, high fat but I'm beginning to  lose weight again. I don't know what to do. Was watching some of Dr Berg's videos on You Tube. He advises anyone with numbness in hands and feet to start - along with low carb-  taking Benfotiamine. It's a fat soluable vit B1 supplement. I'm going to have to try it because I need to be able to use my hands!! 

 

Anyway this is adding to the anxiety. I'm trying to breathe through it and distract myself but most everything I do involves my hands.

 

Prayers would be much appreciated please!

 

 

 

[Pollyjay]

As posted above for the past 5 days I've had numbness in the fingers of both hands and they are also very cold. I thought it may be my diet as my blood glucose serum was elevated on the labs that were recently done. I put it down to the sugar in the BOOST drinks. But I was afraid to stop them and lose more weight. This afternoon I thought about Raynaud's syndrome and if one of my meds could be causing that. I came across this study on Seroquel! 

 

I'm  female, 64 years old and have been on the drug, albeit a very low dose for about 2 1/2 months. Lord, please let it be reversable! 

 

Should I hold the Lunesta and start tapering the Seroquel? I'm so scared and anxious over this.  I hope some other Seroquel user can chime in and let me know if they had this symptom and if it went away. 

 

Summary:

Raynaud's phenomenon is found among people who take Seroquel, especially for people who are female, 60+ old, have been taking the drug for 1 - 6 months.

The phase IV clinical study analyzes which people take Seroquel and have Raynaud's phenomenon. It is created by eHealthMe based on reports of 106,172 people who have side effects when taking Seroquel from the FDA, and is updated regularly. You can use the study as a second opinion to make health care decisions.

 

 https://www.ehealthme.com/ds/seroquel/raynaud-s-phenomenon/

[Blossom71]

13 hours ago, Pollyjay said:

I put it down to the sugar in the BOOST drinks.

I wonder of there is other things in the drinks that may not be helping?   I know they have caffeine in them but I'm not sure whether they have other chemicals is them?   Are there other things you could try to keep your weight up like protein shakes etc?

 

Interesting read about Seroquel.   I hope one of the Mods will be able to advise about tapering it.

 

We have to be forensic scientists to be able to unpick what's going on with us 😟 so I hope you find something that helps you feel better soon x

 

 

 

 

[Pollyjay]

On 4/28/2022 at 6:19 AM, Blossom71 said:

I wonder of there is other things in the drinks that may not be helping?   I know they have caffeine in them but I'm not sure whether they have other chemicals is them?   Are there other things you could try to keep your weight up like protein shakes etc?

 

Interesting read about Seroquel.   I hope one of the Mods will be able to advise about tapering it.

 

We have to be forensic scientists to be able to unpick what's going on with us 😟 so I hope you find something that helps you feel better soon x

 

 

 

 

 

Hi Blossom  I'm really in a quandry about the drinks. I need the calories so bad and they're so easy to get down when my appetite is non existent. There's another protein shake that Sam's club sells, it's called clean protein. Supposedly all organic. They're good and probably much better for you but they're quite expensive. Will see what else I can find.

 

Well, yesterday turned out to be a pretty good day. Husband left for work around 11:30. I had him take some of my racing pigeons with him to release about 8 miles away. I bought the pigeons early last year. All last summer, before I got sick- I was having so much fun training them out to longer and longer distances. I can't believe how something I was so excited and passionate about just left me when I started with the panic attacks, anhedonia etc. At my worst I was ready to donate them to a pigeon racing club as I was unable to work with them the way they needed. My husband talked me out of it, assuring me that I was going to get better and that I would come to regret parting with them. They are actually worth good money but I couldn't begin to wrap my mind around listing them on the online auction site or dealing with the whole shipping thing. Thankfully, a little spark of interest has rekindled! I guess it's another small sign of recovery.  This week he's taken them off every day starting just a couple of miles away.  It forces me to sit outside with the stop watch and wait for them to return. Sitting waiting for them when the anxiety is high and I'm having tremors is a real exercise in patience even if it's only for a few minutes. But I think it's doing me good. At first I thought  the wait and the worry that they might now find their way back was triggering more anxiety but yesterday I was able to handle it much better. I stayed out for a while and planted a few seeds in the pots I'd filled earlier this week. Didn't have any crying episodes and began to feel better and better as the day went on! So, all this to say that you never know what might help direct your mind away from all of the horrible mess of symptoms and allow you to regain a bit of peace and relief!   I also had my weekly, online session with the therapist and that also helped.  By 9pm I was feeling almost 'normal'. My hands felt a bit better too. I even did a bit of medieval cord knitting on a Lucet!  

 

Today, I'm having more anxiety. Husband is at his boss's house helping him get ready for a birthday party they're having this weekend. I'm dreading this party. It's going to be a two day thing! There are going to be quite a lot of people there and I really don't want to go. I don't have to go but feel that I should at least show my face for an hour or so. They know how ill I've been but have no understanding of what I've been going through. The wife was somewhat supportive at first. She'd call from time to time but soon dropped off the radar. They keep telling my husband: "she needs to be on antidepressants!!!! They're young, have no kids and they're in another world. Anyway it's adding to the stress right now. 

[mstimc]

4 hours ago, Pollyjay said:

I'm dreading this party. It's going to be a two day thing! There are going to be quite a lot of people there and I really don't want to go. I don't have to go but feel that I should at least show my face for an hour or so

Polly, when I was in WD I tried to avoid social gatherings, too.  But I found I was able to enjoy myself after I got there.  The reality was much more pleasant than the anticipatory anxiety.  And whatever others may think of you, its none of their business.  Only you know you.  Just relax and try to be enjoy the moment.  The focus will be the birthday boy anyway.  When we're experiencing high anxiety, we always think we're the center of attention, but we're really not.  You'll do fine!

[Pollyjay]

13 hours ago, mstimc said:

Polly, when I was in WD I tried to avoid social gatherings, too.  But I found I was able to enjoy myself after I got there.  The reality was much more pleasant than the anticipatory anxiety.  And whatever others may think of you, its none of their business.  Only you know you.  Just relax and try to be enjoy the moment.  The focus will be the birthday boy anyway.  When we're experiencing high anxiety, we always think we're the center of attention, but we're really not.  You'll do fine!

 

Thanks mstimc. Even when I'm "normal" I dread going to things like that.  I'm going to go for the very selfish reason that "it's food that I don't have to cook"!! I really must eat. I'm at 97lbs and trying hard not to slip down any more. This neuropathy in my hands and the fact that it might be caused by all the extra carbs I've been eating is worrying me. Like you, I do so much with my hands and was looking forward to being able to get back to wood carving and other crafts as I start to feel better. 

 

But gosh my stomach is tumbling over and over like I'm going to a job interview. I feel frightened to death. And then there's Covid on top of it all. Many of his friends have come in from out of state. At this weight, if I get even mildly sick it's not going to be good. Ugh!!!

 

 

[mstimc]

I'm quite the introvert as well, so I understand the anxiety.  The fear of what may be is always worse than what actually happens.  You can see that in your post.  What if I don't eat?  What if get COVID and get really sick?  Try to turn that thinking on its head. What if the food is great and you gain a couple pounds?  What of everyone there is vaccinated and you don't catch anything?  What if you start a conversation who shares your passion for wood carving? 

 

One other thing...if you keep trying to find a cause for all your symptoms, you'll make yourself even more anxious.  Anxiety can hit us in so many ways.  Self-care is wonderful and of course making sure you're not seriously ill is important, but eventually you want to get to a point where you can tell yourself the pain or sensation is anxiety playing tricks with your mind and body, and it will pass.  I know its tough, but if you give yourself that space, you'll find your anxiety--and symptoms--decrease. 

[Pollyjay]

19 hours ago, mstimc said:

I'm quite the introvert as well, so I understand the anxiety.  The fear of what may be is always worse than what actually happens.  You can see that in your post.  What if I don't eat?  What if get COVID and get really sick?  Try to turn that thinking on its head. What if the food is great and you gain a couple pounds?  What of everyone there is vaccinated and you don't catch anything?  What if you start a conversation who shares your passion for wood carving? 

 

One other thing...if you keep trying to find a cause for all your symptoms, you'll make yourself even more anxious.  Anxiety can hit us in so many ways.  Self-care is wonderful and of course making sure you're not seriously ill is important, but eventually you want to get to a point where you can tell yourself the pain or sensation is anxiety playing tricks with your mind and body, and it will pass.  I know its tough, but if you give yourself that space, you'll find your anxiety--and symptoms--decrease. 

 

Thanks mstimc! I hope you had as nice weekend. I did find your success story BTW and it it was a great help and comfort! You came through a lot of suffering. I do appreciate the time you take to leave so much wisdom and encouragement here on my thread! Thank you so much!

 

Well you were right. I went to the gathering and it turned out to be a really nice evening. It was chilly and had been raining all day but I wore a thick sweater and sat around the campfire with everyone. The food was excellent! Not the usual hotdogs and hamburgers but a traditional South African beef stew cooked in a cast iron kettle over the fire, along with other unique things.

 

And yes, I got into conversation with a new neighbor lady. They recently bought a place about 12 miles away, - that's still considered neighbors in these parts. They're only here on weekends and holidays but I'm hoping we might become friends. She's about my age and into DIY kinds of projects, so we had that in common. On the other side of me was another farm neighbor who we don't see very often. She and her girls are really into horses, so we had a lot to talk about also. I found the anxiety came way down and I felt a lot like my old self by the end of the night! 

 

I think this shows that I need to try to be around people more. I haven't quite figured out how to do that yet as everything is so far away and we only have one reliable truck, Hubby usually needs that for work. Once my Dad's estate is settled, we should be able to afford to get another vehicle for me. I think that will make a huge difference. 

 

 

[Pollyjay]

2 minutes ago, Pollyjay said:

 

Thanks mstimc! I hope you had as nice weekend. I did find your success story BTW and it it was a great help and comfort! You came through a lot of suffering. I do appreciate the time you take to leave so much wisdom and encouragement here on my thread! Thank you so much!

 

Well you were right. I went to the gathering and it turned out to be a really nice evening. It was chilly and had been raining all day but I wore a thick sweater and sat around the campfire with everyone. The food was excellent! Not the usual hotdogs and hamburgers but a traditional South African beef stew cooked in a cast iron kettle over the fire, along with other unique things.

 

And yes, I got into conversation with a new neighbor lady. They recently bought a place about 12 miles away, - that's still considered neighbors in these parts. They're only here on weekends and holidays but I'm hoping we might become friends. She's about my age and into DIY kinds of projects, so we had that in common. On the other side of me was another farm neighbor who we don't see very often. She and her girls are really into horses, so we had a lot to talk about also. I found the anxiety came way down and I felt a lot like my old self by the end of the night! 

 

I think this shows that I need to try to be around people more. I haven't quite figured out how to do that yet as everything is so far away and we only have one reliable truck, Hubby usually needs that for work. Once my Dad's estate is settled, we should be able to afford to get another vehicle for me. I think that will make a huge difference. 

Feeling some anxiety today. Husband had to work on the job that's about 30 miles away. I don't know why thi s is bothering me so much. Anyway, he's going to be home around 4:30pm so that's not too bad.  

 

Husband left me some farm chores to do. I took care of those and then went out and groomed the pony. My back hasn't been bothering me the last few days so I think I'll have a short riding/training session with him this afternoon.  And there are still seeds to plant. 

 

When the anxiety is ramping up, one thing I find I have to keep remembering is to focus on relaxing the muscles just above my belly button! I guess it's my diaphragm. I get so tight there and find myself taking very short shallow breaths. Once I can get that muscle to relax and 'let go' I can take a good deep breath. Most of the time I don't realize how much I'm holding those muscles so tight!  

2 minutes ago, Pollyjay said:

 

 

 

[Pollyjay]

Anyone else have that feeling of fear for no reason?

 

Every day I wake up feeling quite good. -Sleeping very good at the moment!- Very low anxiety for the first hour or so, but then, the anxiety gradually creeps up and up and  by noon time I'm beginning  to feel like I'm going for a job interview. Jittery, tremors  and scared. It seems like the more I try to "push through it" the worse it gets. I'm trying to do things outside ( I am getting things done) but have to keep coming back in to lay down and do the breathing exercises. Then, feeling a bit calmer I go back out and it starts again. The weather is warming up a lot now and I'm finding that the warmer it gets in the afternoon, the more the adrenaline ramps up. The Ativan doesn't seem to help. The "fear" gets stronger and stronger until around 7:45 pm ( before I take any more meds) and then it's like someone turns a dial and it all starts to fade away and I start to feel really good. The way I'd like to feel during the day!  

 

The therapist thinks I should take an extra 2.5 of Ativan in the am to help carry me through so that  the afternoon dose would work better.  I know I'm only on a low dose but I hate to  increase the Ativan!  

 

Well, I'm going to head back out there and ride and work with my horsefor a little while before it get's any warmer. Already have that internal jitteriness. It's exhausting.

 

 

[Pollyjay]

2 minutes ago, Pollyjay said:

Anyone else have that feeling of fear for no reason?

 

Every day I wake up feeling quite good. -Sleeping very good at the moment!- Very low anxiety for the first hour or so, but then, the anxiety gradually creeps up and up and  by noon time I'm beginning  to feel like I'm going for a job interview. Jittery, tremors  and scared. It seems like the more I try to "push through it" the worse it gets. I'm trying to do things outside ( I am getting things done) but have to keep coming back in to lay down and do the breathing exercises. Then, feeling a bit calmer I go back out and it starts again. The weather is warming up a lot now and I'm finding that the warmer it gets in the afternoon, the more the adrenaline ramps up. The Ativan doesn't seem to help. The "fear" gets stronger and stronger until around 7:45 pm ( before I take any more meds) and then it's like someone turns a dial and it all starts to fade away and I start to feel really good. The way I'd like to feel during the day!  

 

The therapist thinks I should take an extra   0.25 of Ativan in the am to help carry me through so that  the afternoon dose would work better.  I know I'm only on a low dose but I hate to  increase the Ativan!  

 

Well, I'm going to head back out there and ride and work with my horse for a little while before it get's any warmer. Already have that internal jitteriness. It's exhausting.

 

 

 

[Pollyjay]

Can someone tell me how to edit a post? I keep making double posts.

[mstimc]

Hi Pollyjay

 

When the anxiety hits, try to stay focused on knowing it'll fade by evening. I'm not radically against meds to get past bad episodes, but they're not a permanent solution and as you know, come with their own consequences.   Because your anxiety fades, you know its nothing more than a temporary feeling--try to concentrate on that as reassurance.  You're doing great!

[Pollyjay]

On 5/3/2022 at 11:43 AM, mstimc said:

Hi Pollyjay

 

When the anxiety hits, try to stay focused on knowing it'll fade by evening. I'm not radically against meds to get past bad episodes, but they're not a permanent solution and as you know, come with their own consequences.   Because your anxiety fades, you know its nothing more than a temporary feeling--try to concentrate on that as reassurance.  You're doing great!

 

On 5/3/2022 at 11:43 AM, mstimc said:

Hi Pollyjay

 

When the anxiety hits, try to stay focused on knowing it'll fade by evening. I'm not radically against meds to get past bad episodes, but they're not a permanent solution and as you know, come with their own consequences.   Because your anxiety fades, you know its nothing more than a temporary feeling--try to concentrate on that as reassurance.  You're doing great!

 

Thanks mstimc!

 

So far I'm avoiding taking any extra doses. When I feel that it's really getting worse I go out and gather up the saddle and bridle and spend some time with the pony.  I bought him a couple of years ago for $175, money I made on Etsy. (Back when I tapered off Paxil and was really beginning to feel better, I opened an Etsy shop to sell some of my art. ) I just wanted to give him a home as it was the Christmas season and I was afraid someone would buy him "for the grand kids to play with." Then the novelty would wear off and he would be left neglected in a field somewhere.  He wasn't trained well so they would have been yanking on his mouth and beating on him.  I can honestly say, that pony has been the best therapy! My back's been feeling better so I went out and rode him yesterday and again this morning. As long as I'm on him and focused on getting into his little mind, teaching him to back up on just the lightest touch or to step over an obstacle etc, I find myself very much 'in the moment".  It's it's just for a half hour of forty five minutes but it's enough to change my mindset and get through the worst of it. Though, what I call the" worst of it" now, isn't half as bad as it was just a couple of months ago. I really have to learn to see and appreciate the progress. 

 

I know not everyone can just go out and train a pony, but if you have a dog, go on youtube and find people who show you how to teach your dog tricks.  Just work on something simple for a very short time. It takes you into a different part of your brain and I find it stops me from spiraling into worse anxiety.

 

It was hard to force myself to get out of bed and beginanything like this. I just started by walking out there and brushing the horse for a few minutes. That's all I could handle. I was on a higher dose of of Seroquel and didn't even feel like I was on this planet! My head was feeling so strange. But now, at the much lower dose at least my mind is much clearer. So my advice, if anyone is actually reading this, is to  just take that one tiny first step.  

 

There's a youtube channel called Kikkopup. She has lots of videos

 

 

[Blossom71]

On 5/2/2022 at 5:55 PM, Pollyjay said:

I think this shows that I need to try to be around people more. I haven't quite figured out how to do that yet as everything is so far away and we only have one reliable truck, Hubby usually needs that for work. Once my Dad's estate is settled, we should be able to afford to get another vehicle for me. I think that will make a huge difference. 

Hi @Pollyjay

I describe myself as a social introvert. I need to be around people but i don't always want to talk to them 😂

I hope you can get some transport soon as then that gives you the option of seeking people out when you need it.

 

15 hours ago, Pollyjay said:

I can honestly say, that pony has been the best therapy!

I was interested to read about your pony. I am not remotely a horse person but my son does pony therapy as an organisation that helps kids with various difficulties. It has been an incredible experience for him and he's learned so much from it.  They did a parents session last year and taught us some of the techniques. By the end i could get the pony to just stop in front of me without moving or saying anything. My mind was totally blown!