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Post by EC on Oct 6, 2018 14:36:36 GMT
Thank you for replying on a fri night. I really appreciate it, I'm sure you've better things to do than listen to me moan. I think you're right about not to worry about another baby. I think I'm just disappointed as I thought I'd be well on my to recovery by now. Seems that my periods of feeling ok only last for a week or so then I have a week of feeling physically not right. Last few days I've also had a reoccurrence of sinus pressure and pain which is worrying me. I guess its like being reminded of the trauma of the last year and I worry I will never be free of these symptoms. Xxx
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Post by monica on Oct 7, 2018 8:14:44 GMT
Hi EC
How are you? Are you in uk ? If so the constantly changing weather might account for the sinus pressure as everyone seems to be sniffling . Funnily enoughi too seemed to get sinus issues and had an ct scan of sinuses - all fine ofcourse! But I found that that would cause me to feel out of it, nauseous and headachy. It might sound ridiculous but have do you inhale hot water with steam , perhaps avoid dairy for a bit? Try to treat the physical stuff.
I completely understand the link between the physical and emotional symptoms. It’s v hard to feel ok in yourself when you’re plagued with these debilitating and uncomfortable symptoms. Btw you’re not moaning at all! This is your place to offload - we really do understand.
I cane to the conclusion with my PNI that the illness had to run its course and though I could do certain things to improve how I felt - so in my case meds, exercise, sleep - there was nothing I could do to cure it overnight. Xx
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Post by leanneh on Oct 7, 2018 13:40:22 GMT
Not at all. We’ve all been there and it’s not a nice place to be!
Try to turn it around - you only feel good for a week and then it goes but it does come back. I know it’s hard but try to focus on that!! Focus on when that next time will be.
Try to focus on mindful activities too - I found colouring really helpful for just giving my head time out for everything. It was the only thing which really stopped me thinking about how I felt for even 5 minutes (I was too busy trying to stay in the lines I think lol). With tv or reading my mind always wondered but it never did with colouring.
My sinuses are dreadful in this weather so if you are in the UK that could explain a lot. Menthol crystals are great for helping with sinuses I think. You can get them at most pharmacies x
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Post by EC on Oct 7, 2018 21:28:34 GMT
Hi Monica, yes I am in the UK. I used to do a lot of steaming and sinus rinses when I thought I had chronic sinusitis before the ct scan revealed nothing. Unfortunately it made no difference. I will try and look at things like you suggested. That it just has to run its course. Thank you xx
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Post by monica on Oct 11, 2018 7:36:09 GMT
Hang on in there EC - I know it’s tough. One of my major symptoms was the feeling of pressure behind one of my eyes (can’t rememver which now) - after many months I tried acupuncture . The first session was amazing - I awoke the next day and it had largely gone ! Maybe if you can give that a go?
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Post by EC on Oct 11, 2018 10:59:20 GMT
Thank u for your reply too Leanneh. I will try and follow your advice. My sinus pressure only started after I gave birth, it was never a feeling of being bunged up, just an aching sensation. I have been free of this particular symptom over the summer but it suddenly seems to have returned along with skull pain and head pressure. It does come and go throughout the day but can feel quite intense. It definitely is better than it was when it was really bad but I guess I have an ingrained fear that it could return to when it was awful and the emotions that accompanied it. How long did your eye pressure last for Monica? Apart from this forum, everyone ive met has never heard of physical symptoms that are apart of PNI. I've heard of a few ladies from word of mouth that have had some similar symptoms to me after giving birth but in one of these cases she had thyroid issues. I think if I hadn't found this forum I would still be in an awful state not knowing what's wrong with me but I have found it difficult when no doctor or other mother has any experience that I can talk to in person. Do u think it's just that some mums dismiss physical symptoms to exhaustion. I think because I didn't feel physically ill after my first I knew there was something wrong. I think I had kind of got used to strange spaced out feelings coming and going but this return of the nose and head pain makes me feel maybe this is just my life now and I have got to get used to being in discomfort. I know people have it a lot worse and I try and be grateful for my wonderful husband and lovely children. I just feel this is hanging over me physically aswell as mentally. Xx
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Post by EC on Oct 11, 2018 11:09:50 GMT
Hi Monica, sorry I hadn't read your reply before I posted my message. Thank you for your advice. I did try accupunncture and osteopathy around Xmas last year. To be honest it all brings back awful memories. I don't think at the time it made any difference and started to feel more anxious as the acupuncturist told me either my ying or yang was out and that she was referring me on to a magnet therapist. I was desperate so tried it but inevitably made no difference. I spent a lot of money on alternative therapies and an ent consultant for no relief. Of course I thought at the time I was seriously ill as I had not found this website so maybe acupuncture would make more of a difference now. I guess i am scarred by my past, that hope that I continued to hold on to that some therapy would work and cure me just to have my hopes dashed. I found that very difficult xx
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Post by monica on Oct 11, 2018 11:43:33 GMT
Hi EC
I’m sorry if you mentioned you’d tried acupuncture and osteopath previously. Like you I felt desperate to get some sort of diagnosis and also paid privately to see osteopath, eye specialist and neurologist. The first acupuncture session went amazingly - the next day the pressure sensation had largely gone and I felt amazing. It did return slowly but wasn’t as severe. The second session didn’t do so much but I had to take my son so wasn’t relaxed and went on to work night shift where as the therapist had suggested complete relaxation.
All my symptoms largekybstarted with the pressure sensation after yetvanother crazy week when my second child was 4 months old. Id been exhausted , a little low, felt stressed but largely manageable then overnight a blood vessel burst in my right eye which went in a day but I was left with this pressure sensation which lasted for well over a year and was one of the last symptoms to go. For a while I assumed my mental symptoms of dreadful anxiety and depression were separate to my physical ones but I now believe the two went hand in hand .
Additionally to all the symptoms is mentioned I was incredibly run down and had 4 months of on and off tonsillitis, oral thrush . Maybe for you too being stressed makes you run down which triggers this. Also another thought could the nasal pain be an allergy? You mentioned that the summer months gave you some relief ?
I’m not a dr so can give you clinical advice not explanations and indeed I didn’t get any however , there are many ladies who suffer from terrible symptoms which could stem from anxiety/depression /hormones. I too had never heard of this . Antidepressants did help with many of symptoms suggesting that most were PNI related and the pattern of them both physical and emotional which would ebb and flow strongly indicate PNI.
Don’t give up hope! I know it’s so hard when you pin your hopes on new treatments suggestions and when they don’t work it’s devastating. Remind me are you on meds?
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Post by EC on Oct 11, 2018 21:09:33 GMT
I'm on sertraline. When I saw the ent consultant I had an allergy test which came back negative. Any test I had done was a dead end. It's just so frustrating that the pain has returned. I feel like it's never ending xx
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Post by monica on Oct 15, 2018 11:39:39 GMT
Hi
What dose are you on? I ask because I took citalopram 10mg to start off with then after a bit it seemed to stop working - so gp increased it to 20 mg which I found out later was a standard dose. Might be worth discussing increase?
This illness is unbelievably frustrating - there’s no evidence of it which makes it harder to accept as well. Saying that I belong to a closed Facebook group for women with post partum physical problems - there are lots of questions and theories - vit B toxicity , Lyme disease etc . If it won’t make you feel worse I’m happy to send you link x
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Post by leanneh on Oct 20, 2018 19:46:03 GMT
I would agree it could be worth you looking at your medication if you feel like this. I was on citalopram 40mg and despite an initial relief when I started taking it, it very quickly disappeared and didn’t do anything for me. They then switched me to sertraline 200mg and that made a huge difference. Equally I know someone at the moment who has been on sertraline and it’s really not helped so she has been moved onto something else. Different medications seem to work better for certain people than others and I think sometimes it’s a bit of trial and error as to which is the best for you. Are you seeing a specialist perinatal team? They are usually really knowledgable about medications particularly linked to pmh. X
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Post by EC on Oct 20, 2018 20:53:53 GMT
Thank you for your replies ladies. I am on 50g a day of sertraline. The strange thing is the sinus pain disappeared around feb/march time before I even started taking the meds. I did have pressure on my nose and face for a bit but it reduced and also didn't bother me as much as the pain. Last few days the pain in the bridge of my nose has been bad but a feed days before that it was ok. So frustrating! Have u seen sinus/nose/facial pain in other ladies on this site? I developed skull pain around April but interestingly this doesn't bother me as much as the face ache. I think this is because The facial pain started when I felt physically and mentally awful and having it again reminds me of that awful place. I definitely felt less spaced out and strange over the last week which has been a positive and a nice relief but headaches, skull pain and facial pain has replaced it. I've also got the sore feeling in my nostrils that I had before the summer. You mentioned the dosage of sertraline. I have certainly thought about upping the dose. It's hard because I didn't want to go on tablets and I worry that maybe I would feel better and then feel worse again and then I would feel the need to keep upping the dose. I am not under the care of the perinatal team. Unfortunately when I was referred to them by my doctor, I thought there was something physically wrong with me which was making me feel very anxious. I had a potential diagnosis of chronic sinusitis which turned out to be wrong and told the mental health nurse this. She was very sympathetic but referred me back to docs for cbt. It was a few weeks into the cbt that I found this site but as has been the typical response from everyone I've spoken to, the therapist hadn't heard of physical symptoms with PNI. Having said that I still found the cbt techniques useful. Don't think I could be re referred back to perinatal team as my baby is over a year. Sorry for long post. I know I feel mentally a lot better than I did a year ago. Trying to remind myself this will pass and I'm now running twice a week and going to yoga weekly. Just feels like I'm so mentally tired wondering what symptom is going to rear it's head. In darker moments I think, maybe this is just it now, chronic pain for the rest of my life. Hope you are both well x
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Post by EC on Oct 21, 2018 11:01:01 GMT
I feel like I'm obsessed with myself and how o feel st the moment. Panicked that maybe I go have lymmes. Had test but maybe it was too soon for it to get in my system. I'm so confused. Just thought I was in a place where I had acceptor was PNI. All this has been over a year now! I want to believe I'll get better and some days I do but other days I can't believe this has happened and is still happening. I know I have better days but I honestly feel like the trauma of the past year is etched in my mind and body now. So sad that my daughters first year has been marred by this. Sorry for being such a downer on a lovely day x
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Post by leanneh on Oct 21, 2018 15:17:46 GMT
Try not to be so hard on yourself. Like you I focused so much on how my sons first year was the worst of mine but now he’s 2 and so much fun I’m glad it was then rather than now. I know at the moment that first year seems like the world to you but I promise it’s such a small part of the bigger picture. You will get through this it’s just about finding what works for you.
That’s a very low dose of sertraline (I started on 50mg and then went up to 100 then 150 then 200). Perhaps if it has made a difference you could just increase it to 100 to see if it helps that bit more. I totally understand tour retinance re the meds. I was exactly the same. If you had a broken leg though you would use crutches until you were strong enough to walk on it. This is just the same. Thy are tools to help you cope until you recover and feel able to cope without them. It won’t be forever. I’ve recently come off mine. I reduced them very slowly so I could keep an eye on things and then eventually stopped them completely.
I’m not too sure on the physical symptoms as I never personally had them but if they have exhausted the investigations for anything physical it could well be. Perhaps the Facebook group Monica mentioned may be helpful for that. Can you ask for a referral to ENT to check they can’t rule out anything further? The piece of mind will at least take some of the pressure off. X
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Post by EC on Oct 21, 2018 19:21:29 GMT
Sorry for all the mistakes in that last message. Just reread, it must have been very confusing. I have seen an Ent consultant and had a ct scan which showed nothing. It was very kind of Monica to suggest the Facebook group link but I have a tendency towards health anxiety when I'm feeling anxious so I don't think it would be very good for my mental health. I had so many tests last year that the docs did that my logical mind tells me it must be PNI, however sometimes hard to accept that this can happen to your body. I think I suffered from post natal anxiety after my first child and somehow came through it without drugs. I didn't have any physical symptoms though so I think that's why I couldn't comprehend that it could be PNI this time around. I guess I'm worried that I would get all the symptoms back once I started reducing the pills. I feel like I have improved a lot since april/may but sometimes I don't know if it's the symptoms that have reduced or my perspective of them. I think knowing that others have had similar weird symptoms and it was PNI made me feel more at ease with them. Having said that, certain days I get frustrated that I'm still experiencing them and anxious it's something else. I don't know what's normal for how long I should be experiencing symptoms or whether it's different for everyone. Thanks for you'r reply. I feel like you girls know so much more than any of the health professionals I've encountered x
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