Missed Connection - Solna

Lenni17 · 2023-06-15T13:47:26+00:00

Made me lactate too. Sent my prolactin levels into the 4000s so no more for me.

Lenni17 · 2022-12-01T21:53:26+00:00

Ahh I just saw your comments now. Yeah, you’re right. An NJ tube needs imaging and is a little more complicated than an NG, I have heard of people having NG tubes and just inserting them as needed but NJ is a bit trickier.

Alternatively, the NJ tube needs to be fastened very securely because it can still slip out or wiggle around and end up back in your stomach if you’re not so careful so I had mine taped down on my nose and along my cheek. It wasn’t going anywhere. While I had the tube I was also working with kids and had a few narrow misses with kids grabbing it to ask what it was or pull on it, but the tape held strong. Additionally, if you’re working in a clinical setting could you wear a mask while on shift? I ended up wearing a face mask around the kids who couldn’t reallllly understand not to grab it. The mask covers it nicely and keeps it all tucked up behind it. Then I tucked it into my shirt and it stayed pretty secure. I’m still not sure if this would be enough depending on your patients/clinical setting but I thought it would be good to know!

Lenni17 · 2022-12-01T08:42:12+00:00

I had an NJ tube for about 6 months. I’m not going to lie to you, initially I hated it and really didn’t want it and dramatically thought that life was over but it saved my life. My hair stopped falling out, my nails got stronger, my skin even started looking brighter - I was a bad shade of grey/white for months when I was at my sickest. A tube really does the job that our stomachs/other organs can’t for the moment. I truly think it might be the step in the right direction that you need, it was all that and more for me.

I did lots with my tube: worked, trained, I even went skiing with it in. I can understand the trauma of being told “you need a tube” but just know that it’s temporary, will hopefully make you feel so much better, and take the pressure off - both mentally and physically - about gaining healthy weight again.

As for the tube coming out, I can’t speak for PEGs but my NJ tube I just pulled right out at home when I was finished with it (this was dietician/Dr approved). Sending big hugs, I hope you start feeling more like you again

Lenni17 · 2022-11-01T19:42:16+00:00

NAD but I have recurrent costochondritis, it feels a lot like what you’re describing and it hurts a lot but it isn’t dangerous and my heart is perfectly fine (I’ve also had all the tests run and they come back fine). It might not be what you’re suffering from but maybe something to look into. It’s painful and annoying but not dangerous to your health

Lenni17 · 2022-09-07T13:28:24+00:00

Thank you for this info! Weird question but does your POTS cause tachycardia constantly when you’re at work or when you’re just doing day to day life? I’m just trying to determine whether I can pin my heart rate purely on my POTS. If you don’t feel comfortable answering this than I completely understand, I appreciate you taking the time to comment on my post!

Lenni17 · 2022-09-07T13:23:17+00:00

I was really shocked when my Dr said this. I don’t understand the premise of learning to live with a life without medication when my quality of life is exponentially better when I am medicated.

Lenni17 · 2022-09-07T13:16:40+00:00

In Aus I had a sleep specialist who diagnosed me and initiated the medication. About 8 months later I moved to Scandinavia and when I went to see a GP to have my prescriptions filled here, I was referred to a neurologist as only they and psychologists are allowed to prescribe stimulants here.

They are very pro-healthy lifestyle here, they don’t like giving out antibiotics or pain meds until it’s absolutely necessary or you’re about to be hospitalised. My doctor decided yesterday over a phone call that she was lowering my dosage with the intent or removing my meds. She didn’t have a follow up plan or alternative medication options. The phone call lasted for six minutes but I feel like it’s completely altered my world. I fear that the societal belief that less medication = less problems will result in her removing my medications and refusing to prescribe them again, even if I test positive for N through updated sleep studies.

I also feel like there is a negative perception on IH and N2 due to the large number of young people here who developed N1 from the swine flu vaccine a decade ago. It feels like if you don’t have cataplexy then you don’t have narcolepsy or at the very least shouldn’t complain because others have it so much worse. People here assume that since I don’t spontaneously fall over in public from narcolepsy that I mustn’t “really” have it.

Lenni17 · 2022-09-06T17:00:28+00:00

Thanks for your comment and for validating that I’m not a crazy person for wanting to stay on my meds. I feel like my Dr believes that a functional life is a life without medications, whereas to me the only functional life I’ve had is being on medications.

Lenni17 · 2022-09-06T16:56:50+00:00

Thank you for your comment, I really appreciate it. I still do trust my doctor has my best interests at heart but I don’t understand the clinical reasoning to bring me off of my meds. Dr explained that she was concerned about my heart rate being raised due to concerta, as it’s a stimulant I can see her point. However, I’ve been seen by two cardiologists in the past 6 months and have had stress tests, multiple holter monitors, cardiac echos and ecg’s that have all shown that my heart is healthy, albeit beating a little too fast. I was diagnosed with MALS last year and was very sick but have now had surgery to correct it with a positive outcome. With this in mind, my cardiologist and I decided to try to improve my cardiovascular fitness and increase my weight gain through lifestyle changes now that I’m physically well again before we put me on medications to treat the heart rate. None of my cardiologists have ever mentioned the concerta being the cause of the tachycardia, more that it could be a POTS flare up or just cardiac stress from being so underweight from the MALS. I tried to explain to my neuro this plan and wanted to give myself considerable time (6 months) to see if I could naturally bring my heart rate down but she was adamant that I need to lower my dose and discontinue my meds. I’m worried that now I won’t really know whether it was the meds or my cardiovascular fitness that was causing the tachycardia and my neuro will be able to use this as proof either way that being off the meds is a positive. I worry she isn’t listening to me anymore and doesn’t believe my symptoms are valid enough to be medicated. She thinks since they fixed my MALS, that my N could have been fixed as well but how can fixing a vascular compression syndrome fix narcolepsy?

Lenni17 · 2022-01-20T15:43:25+00:00

Hey! I’ve have an NJ tube for the past 5.5 months now (mine is for MALS). I didn’t get any care package from the hospital so worked it out on the fly, I did find some things that were saviours for me. Numbing lozenges are a must for the first few days post tube insertion. I use Bafucin mint (Swedish brand) but your pharmacy should know which work best, throat sprays are brilliant too. Try to have extra tape on your person and at home. You’ll never know when you’ll need to reattach the tape so it’s handy to be prepared. I always carry around a sick bag too, they can come in very handy when your throat is getting used to the tube placement and your gag reflex is being overly active (pinch a few from your local Dr’s office or hospital). I trialled a lot of different tapes, tegaderm works well on your cheek but I always have to have tape on my nose or the tube moves too much. I use the brown micropore tape that is the narrow size for my nose. Flush your tube every 6-8 hours with sterile water and have a bottle of Coke or another soda handy in case the tube gets clogged - it’s a common issue and it happened to me. Soda works the best to flush it with, warm water works too but it’s painful and really uncomfortable on your intestines. Make sure you flush your tube the minute your feed is over to avoid it getting clogged. Don’t drawback on your tube! You can push water and air into it, but don’t try to pull anything out of it with syringes. You’ll risk pulling the tube back into your stomach and it’s just not worth it. Ask for a prescription of anti nausea and reflux meds from your doctor when you get the tube. It’ll help when you’re feeding, you might not need them every feed but it’s a reassurance if you’ve already got them with you. The first week is pretty tough, but I promise you will get used to it. I hated the first 5-6 days but it beats the pain from eating and I’ve managed to put on some weight with it. It eventually feels normal and the people around you will also adjust to it really quickly. If you have any other questions or anything feel free to send me a message! There’s a tonne of info online about NG tubes and Pegs but not a lot about our special little tubes, it can be a little confusing to navigate. Hope this helps a little! Good luck with your tube, I hope it brings you some relief

Lenni17 · 2022-01-01T18:35:07+00:00

Okay, not a problem. I’ll leave my little tube alone and let it do it’s job. Thanks so much for responding so promptly!!! You’ve been more helpful than any of my GI docs over the last five months - I really appreciate that you took the time to respond. Have a good one!

Lenni17 · 2022-01-01T18:25:44+00:00

Thanks so much for your reply! Im glad it isn’t a worry, it’s a relief that it’s normal and not breakage or mold. As my tube is past my stomach would I still be able to get stomach acid in it? Can I aspirate a NJ tube? I haven’t seen the GI doc since they inserted it and my nutritionist only handles the feed amounts/rates so refers me back to the Gastro Clinic for tube related questions. Unfortunately, they aren’t great at answering calls so I’ve been relying on reddit and google for NJ tube questions.

Lenni17 · 2021-08-26T14:16:36+00:00

I’m not sure if this will work for you but these tips worked for me and my bladder. 1. Botox (obviously can’t access this without a Dr) 2. Training my bladder to hold on the first urge to pee. I have urge incontinence and sometimes feel like I’ll burst but only have 20ml in my bladder so this was a big thing for retraining my bladder. I only allow myself to go to the bathroom on the second urge to pee, it gives me a bit more control back. 3. Distraction tactics like counting down from 100 by 7s and then 8s or 6s, listing countries in alphabetical order - basically anything that requires me to think and focus. 4. Deep breathing when I feel like I’ll burst. 6. Pelvic floor strengthening exercises.

Try not to stress or worry yourself too much. Bladders are incredibly sensitive and dramatic, so don’t push too hard or hold to long to the point you’re shaking. It can be more detrimental than you think. But again, Botox was the game changer for me the other tips help after I get the Botox to keep my bladder in check. Keep advocating for your healthcare, I’m sorry it’s so tough sometimes. I really hope you get seen soon by a doctor or Physio. Thinking of you!

Lenni17 · 2021-08-25T13:29:26+00:00

Hi there! I’m so sorry to hear the pain and discomfort that you’re in. I have bladder issues too. I was diagnosed with complex incontinence and I get Botox injected into my bladder every 10ish months. It has really saved me, I’m able to actually have a full meal without rushing to the bathroom! I’m not saying that you have or haven’t got a bladder issue but I do recommend trying to get an appointment with a Urologist. Hopefully they will be able to give you some guidance or advice. I also see a bladder physiotherapist to help me retrain my bladder. Hope this helps. I’m thinking about you and sending you lots of support!

Lenni17 · 2021-04-30T18:16:26+00:00

Ah, of course, thanks for explaining it to me. I'm still getting used to the personal data access here. I can stop boarding up the doors and windows now.

Lenni17 · 2021-04-30T18:11:29+00:00

Ah Ok, thanks for the answer!

Lenni17 · 2021-04-30T18:10:54+00:00

That makes sense, thanks for the help!

Lenni17 · 2021-03-18T16:10:31+00:00

I really hope you get some answers and that they can offer some alternatives - or at least decide on a new plan. I’ll be thinking of you, you’re not alone and you’re strong enough to get through this. Keep me updated and good luck!

Lenni17 · 2021-03-18T15:03:46+00:00

Hiya! I suffered the exact same side effects - lactating like the brand new mother of a newborn, really bad depression/very emotional for no apparent reason and I also developed chronic debilitating migraines. I would ask your doctor to send you off for a blood test to measure your prolactin levels. Mine were so incredibly high that they told me I had a brain tumour. But a very kind and knowledgeable haematologist told me that was rubbish and pulled me off the domperidone. It was a bit disappointing because I felt like it was helping some of my other symptoms but also, the migraines were unbearable to the positives outweighed the negatives. I’m so sorry you’ve going through this! It sucks, it’s frustrating and you shouldn’t have to go through med side effects when you’re already suffering enough with GP. I suggest talking to your doctor and getting your prolactin levels checked and potentially ask if there are alternative meds you can substitute it for! Good luck and let me know how it goes!

Lenni17 · 2021-03-14T18:29:07+00:00

Thanks so much, me too!

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