Hi everyone did the pain come back — UK Migraine Support And Advice Forum

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  • Doesn't sound as if I've got much to look forward to then!

  • I think I maybe the exception to the rule

  • I am in the same boat. Have they said why they want you to stop the Triptans? I wish Doctors would actually explain things. What harm do they do? Are they destroying our livers/kidneys? I got a shock as a mid 20's woman, on the pill, when a doc said "are you trying to get a stroke?" Of course the pill has changed a lot since the 70's/80's but we need the chance to weigh up the pros and cons ourselves. Life is not worth living if spent in bed, in the dark, throwing up and scared to make any plans because you know they will be ruined by a migraine. Zomig is the only thing I can rely on 95% of the time to work.

I m thinking of trying amitriptyline as prevention method now on day 6 of daily... — UK Migraine Support And Advice Forum

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  • I've been on 50ml every night and I've not migraine for 2 months so it's worked for me .I do take other meds also x

  • Didn't work, always tired, massive weight gain and hair loss x

  • 10,20 and 30mg didn't do much for me but 40mg is working well, I feel the migraine coming on and start to panic thinking the pain and aura will hit bad but it just isn't!! The side effects really don't seem that bad to me (drowsiness I just take them early in the evening, heartburn a rennie fixes it, a couple of nightmares but seem to have stopped, dry mouth, and grogginess/spaced out) but I'm still much happier than when I was getting several migraines a week. It's working for me for now but I'm working towards going medication free and moving to a better climate as mine are mostly weather related.

Today I am 1 year free of CH — Cluster Headaches Exposed

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  • I'm so deathly afraid of needles! I have to muster up the courage to take my Sumatriptan injections, too. LOL & SMH

    There are times I deal with the pain, instead of fumbling with the epipen - not to mention the bruising I get from it

  • Aw that's awful. I think it's totally worth trying if you can.

  • Xxxxxxx Yzzzzzz

I have been off work for 2 weeks with a bad episode with stabbing headache and... — UK Migraine Support And Advice Forum

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  • If I had been laid up for 2 weeks I would be anxious too. Have you seen your Doctor or been to A & E? These symptoms could be down to too many meds or something sinister. Please get checked out.

  • I have been to the doctor had blood tests and going for a scan on Monday x

  • good, hope they get some answers and relief for you.

Any preventative medication safe to take whilt trying to conceive pregnant — UK Migraine Support And Advice Forum

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  • Have an appt with GP but not for a few days yet. They told me to stop but didnt offer an alternative. Whilst pregnant woth my son I ended up with pre eclampsia and took labetalol through pregnancy to control my blood pressure. Didn't have migraines either. Wonder if it servws the same purpose

  • Could you ring and ask for advice. Explain that it is unbearable and see if they can prescribe anything. Does your surgery have a walk in clinic?? Mention your previous experience with the other med. Hope you get some answers.

  • I'm currently 16 weeks pregnant and had to stop all my meds as soon as I found out. Sore my consultant who advised I could start taking propranolol but after hearing feedback on experience I've decided against taking it as there where too many women who had miscarried before 20 weeks. I can still take asprin with paracetamol but a much lower dose than normal. Was told they should get better but haven't so far

Recommended places in — Australia New Zealand Cluster Headache Support

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  • Dr Sun-Edelstein is the best and listens . She is the only one to see . It may take a while to see her but she is worth it

  • Yeah 9 month wait... Will be seeing someone else in the meantime

  • She is awesome, listens, tries alternatives to others, calls whenever I leave a message, I tell her she is the headache guru

Anything I m missing. I m over it — Australia New Zealand Cluster Headache Support

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  • I'm a Vitamin D success story.

  • The regime says 10,000 a day and it looks like they are 1000 tablets so you'd need to take 10 of them daily

  • remember it the , vitamin k2 m7, very important as its the same as the bacteria normally found in our gut, but with taking higher doses of D3, it draws calcium into the stomach, hence the need for k2, m7 type, to re direct the calcium away from veins and bad places to where it should be. vitamin k2 M7 is what are slangly called the stomach police. Your can get it naturaly from some foods, the japanese food Natto ? k2 M4 is another type that works, but I believe the M7 is a natural derivative. Normal K2 only, is not the same, it must be the M-4 or M-7 variety, prefferably the M-7 type !!!!!!!

7 days of blissful silence in my head Then driving home with my kids from... — Cluster Headaches Exposed

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  • Hi Greg, I'm a newbie from Waterford

  • I'm so sorry Tammy. I'm really new to all this, still in hospital trying to get meds sorted. My daughter saw one before I was admitted & hasn't spoken to me or visited since. It's breaking my heart

  • I don't care what thr radar says. I can tell ya better than it can

Hi thanks everyone for your messages yesterday they helped no end my son has... — UK Migraine Support And Advice Forum

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  • I personally didn't want my child on adult medication, we have had migraines with him for 6 years and and he is nearly 11 now...I have to say I think that finally despite being under a pediatrian and me going down every route for a solution he may just be out growing them. he went from 4 a month with vomiting for many years and now maybe 1 every 2 months...saying that he doesn't eat anything with E numbers in, drinks lots of water, doesn't eat crap food or sweets often, he has a good routine. he is allowed to drink water in class to aid hydration and might be worth going for a colour test at the opticians..my son was also given coloured plastic overlays and coloured books at school to take the glare off black writing on white paper which can affect eyes and cause migraine. as he is older now and so used to suffering, he now takes one calpol melt as soon as his head hurts and if poss takes himself up to bed for a sleep and 8/10 times it goes and there is no vomiting...hope any of this can be of help to consider x

  • I dont know if this will help him, i was advised to cut out anything with aspartame or sweetners in also cut out all things like pickles including things with vinegar flavour, i only drink 7up now along with tea n coffe and mine have dropped dramatically im also on topiramate and amytritalin xx

  • ThAnkyou Janine I am a bit worried about starting on them after reading the side effects another lady on here suggested b2 vitamins so might give that a go instead - i just don't want him missing loads of school if they are going to become more frequent x x

Anesthesia CH Has anyone ever woke up from anesthesia with a Cluster I have... — Cluster Headaches Exposed

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  • They already know, & they said for me to bring a "pre loaded" shot for them to have just incase!

    I have 2 procedures & I dread them SO bad

  • I have had 5 major operations never woke up with one.

  • I have had 4 operations and never a CH afterwards. Anesthesia and pain meds keep them away.

Anyone else suffer from leg cramps and believe your migraines cause them — UK Migraine Support And Advice Forum

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  • I've gained weight like 6 lb and been exhausted constantly

  • Xxxxxxx Yzzzzzz Louise ugh! Looking forward to that then.......

  • I had a major reaction to Gabapentin and so did my daughter. My legs/feet just became so swollen I could hardly get my jeans or shoes on and in 3 days my weight increased by 8 pounds. My ankles were non existent and GP took me straight off them. Horrible experience. I found out at a later date that I was very low in Vit D and low in Potassium. Treated for both and although I still get leg/foot cramps it isn't half as bad as was.

Can I just say thank you to each and every one of you I was banging my head... — UK Migraine Support And Advice Forum

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  • I agree....linking up with other sufferers makes you feel less alone ( I went to a migraine conference and felt like I was meeting people from 'my planet' for the first time!!

  • I totally understand. I have 4 children, all of them have inherited my migraines and have suffered from the age of 4. It's so horrible feeling so helpless.

  • Thanks Karen. So sorry your children suffer too. I only have one and seeing him suffer was horrendous in itself. But thanks to everyone on here I am now armed with a supply of products and methods to try to ease his suffering. For that I'll be forever grateful. My heart totally goes out to all you lovely people xx

Last night I started to feel dizzy and when I got up this morning I can t... — UK Migraine Support And Advice Forum

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  • I've had this ,and it was a middle ear imbalance .the fluid needs to be reset .there are head exercises to do look it up on line ,it's worth a try ,x

  • Thank you. I will have a look at those.

  • did you get to the drs Emma Ann Louise Jones? hope you are feeling better this evening

Pretty sure my soul was just removed slowly through my nostril with a molten... — Australia New Zealand Cluster Headache Support

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  • I have a nasal spray as well. Not sure if it works but does clear my nose lol. I just found eating ice cream when you start to have an attack kinda stopped it in its tracks from getting worse and would slowly go away. Thats why i eat it with a small spoon to take it slower. It may not work for you but it does for me and i dont believe I've heard anyone else talk about having ice cream so they don't come on.

  • In the name of science.... I shall eat icecream :) best excuse ever!

  • Lol

Hi first time post here My 8yr old son was diagnosed with migraines back in... — UK Migraine Support And Advice Forum

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  • Try travel sick bands .. They work on pressure points and should alliviate the sickness ..worth a try .. No drug solution .....I would try warm hot water bottle on back of neck too... Opens up the blood flow ..which may be restricted

  • I did put pressure on his daith point and it helped for about 10 minutes so depending on how often he gets them, (this one was his worst but had 6 since January including this one) I may look into acupuncture to help him with it. So pleased you found something that worked for you. It's such a debilitating thing, seems to hit so hard and life just 'stops'. My heart goes out to anyone who suffers from these xxx

  • Thanks, that's 25 years I've had them now with varying frequency so I've tried a lot!! I hope your son finds the thing that helps him really soon xxx

Hey all I ve had a really busy stressful day today which started with waking... — Australia New Zealand Cluster Headache Support

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  • No but i have past out because of the amount of pain i was in and was wrecked for 24hrs afterwards

  • I get that after attacks now and then and sometimes when my cycle is just starting and the attacks aren't full blown yet, almost like it's even aftermath of one that was building up to hit me but didn't quite get there.

  • I get this alot. It's like a background pain. Lasts for weeks.

Thanks for reading — Parent support forum of children teens suffering with migraines

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  • Hi Hannah, thanks for replying. Sounds exactly like my little one. It's so awful watching and not being able to take away the pain. How old is your son now?

    Have his migraines become worse?

    Amali started around the same time, 6mo. Took almost 18 months for anyone to listen to me and my concerns!!

  • I know no one would listen to us he is 4 now and we did have the migraines under control with a cranial osteopath but have had a few blips recently but his symptoms have changed. He isn't getting a headache or head tilt but still being violently sick

  • My sister in law suggested an osteopath. I might look into that option. We've been to a chiropractor but had no results.

    These poor kids. So unfair!!

Been up since 4. 05am with a bad one. I will beat this — UK Migraine Support And Advice Forum

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  • Xxxxxxx Yzzzzzz you too find heat soothing. People always talk about cold packs which I would hate. PS. I also have ear plugs and (lovely) snoring husband. I can't bear the slightest sound. Blackout blinds are good.

  • Definitely the worst for me too!

  • Zomig nasal spray x 2, Imodium and will power of not letting myself down. After suffering with them for over 40 years I won't be defeated if I can fight them, I do. There are many many days I can't function. But, I am determined to live my life as best I can

    I have seen the concern and worry in my families eyes over the years, I'm tired of missing out on family events.

    I had to prove that I had a disability at work re sickness/time off through chronic migraine attacks. I had to involve occ health and HR to stop a colleague wearing strong perfume, despite her being aware it affected me.

    The biggest fight of all is with myself. To get out of bed and function, but my goodness I'm going to do it if I can.

    Botox has helped, my next session is due in May. I will rule my condition, not my condition rule me

Love cooling patches when I have stabbing or throbbing pain Much easier to... — My Migraine Support Forum

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  • I used to find something similar years ago! I loved them too because like you said, it feels good and no ice or cold rag to get the pillow wet. But i couldn't find them and i always forget amazon, even though i have prime lol

  • I have used these for years they are a life saver for me. As u say stick them on and leave them while you sleep

  • I got a headache hat and a icekap. Best things ever

What does anyone do for insomnia I know my migraines are sometimes by lack of... — My Migraine Support Forum

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  • I had to add melatonin Dr with my sleeping pills not the plain. I take about 2 or 3 of the 10 mg. Has helped me tremendously. I get it from Walgreens.

  • Temazepam. It's great. Can't say enough good about it. No side effects either. I use it about once or twice a week.

  • I hear you I get home from work about 11:30pm and I am in bed by 12:00pm (yes with the tv on.) I usually to not fall asleep till 5:30 or 6:30am. When I do though I crash out. I do not get up till 2:00p right before work.

Can you get disability for having clusters — Cluster Headaches Exposed

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  • I am a Chronic Cluster Hadache sufferer. Like Roland, I was approved for SSDI on the first try. You definitely have to send a well documented, detail oriented application when you apply. My packet was probably 2 inches thick with records from my PCP and 2 Neurologists. The key is for your doctors to document extensively your symptoms, all testing that was done and all treatments tried in an effort to prevent or abort cluster headache attacks.

    In full disclosure, my employer's Long Term Disability insurer assisted with the initial application. However, I did ALL of the leg work to gather documents and put the final package together. The LTD carrier had a vested interest in helping me get approved for SSDI...because that meant that they have to pay me less every month (Salary - SSDI = LTD payment)

  • I'm trying here in California. Have a hearing date for June. Denied first time of which is standard practice I guess in 2014 appealed and denied again. All doctors: neurologist, GP, and physical therapist state for record total disability. I'm Chronic Cluster with Weir Mitchell's as well. Medication does not work. o2 and sumatriptan sometimes but not always. This has been a hell ride. I read here where someone stated the only thing left of who he once was is his name. Ditto for us all I'm sure. He couldn't have said it better. My mental hurts as bad as CCH.

  • I get it in the U.S.

— Parent support forum of children teens suffering with migraines

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  • I'm a single mom, so it all falls on me. I work a 90% schedule where I leave a couple of hours early 2 days a week. I work from home one day a week. I have a FMLA which lets me leave when I need. It's not perfect and my manager is not easy to work with. So, I'm starting a business with hopes of transitioning to working from home fulltime.

  • I have the option to work weekend nights (12hrs/shift). That way I am with my kids all week and my husband is there all weekend. I am too, just asleep, so if she gets a migraine she can just come sleep with me. I know not very many people have that option, but, it's great for us.

  • I had to give up work when my youngest got NDPH. For the first couple of years she would go to school whenever she could but it was usually only an hour a day maximum. For the last 2 years I have home educated her. I don't have a job as my husband works quite long hours so is able to support us financially. His job has always taken priority for us and I have worked whenever I could. Plus I have teaching experience so it made sense for us to organise things this way.

Might be a silly question but I m really sincere in asking it is your memory... — Cluster Headaches Exposed

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  • Lol. Yep!

  • Oh yes!

  • Kristiina Niemelä I had all the dementia testing. MRI and all that too. In the end it was so to sleep deprivation derived from anxiety/stress. Once I started getting a bit better sleep. Memory returned. I'm between clusters now for several years. But the old habits of being afraid to sleep for fear of having a CH wake me after I could work an abortive really hosed me.

    Working behavioral modifications to get to sleep better.

    The beast stays with us all. Even when he's not poking a hot poker in my eye. Prick ! It is indeed similar to PTSD.

— Parent support forum of children teens suffering with migraines

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  • Tracy the same with your child. It's heartbreaking.

  • It is definitely comforting! I started this page because I couldn't find a single person who understood what I was going through and I didn't want anyone to go through watching their children suffer alone!

  • Xxxxxxx YzzzzzzO'Connell your story is just like ours! My 6 yr old hit his head when he was 3. He fell off the couch backwards and hit his head. It sounded bad but wasnt that far of a fall and he stopped crying pretty easily. I didn't think much of it but that night he started crying and just kept pointing at his head saying it hurt. I took him to the ER and they did a CT scan and everything was fine. That was his first migraine. He's been getting them about every month, sometimes more sometimes less ever sense. I have head aches and my dad's side of the family has migraines. It's horrible to watch him go through them!

Hello I have had migraines for sixteen years I have been through countless... — My Migraine Support Forum

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  • I take it now for my depressio. And fibromyalgia. Ive had success with it. But they didn't give it ti me for migraines

  • I used Cambia for several years and if I caught it in time it worked to at least knocked the Migraine down some. Cambia is very hard on your Kidneys and I now have Stage 3 Chronic Kidney Disease from all the meds.

  • My family phy rx for major depression. I began to develop a everyday migraine. I was eating my migraine pills like candy I went thru 60 butal in less than a month. And 12 imetrex week and half. They were terrible. I was getting toradol shots. Nothing was working. I was even taking morphine. Very well could have been rebound too..She sent me to a pain specialist who said the Cymbalta is more than likely part of the culprit. He took me off and put me on nortriptyline. Migraines have gotten better. At least I'm not eating pills like candy anymore. Not gone but manageable for the past week and a half

Have any of you had problems with illegal behavior or abuse by medical... — My Migraine Support Forum

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  • Get an attorney involve now.

  • Wow. So sorry!! :( That sucks. Have you consulted a lawyer? Maybe he could help you get emotional damage compensation.

  • If you think the behavior was inappropriate you could do either but the hospital and doctor are going to protect themselves. Consult an attorney most consults are free.

Anyone on cymbalta. I recently been put on it and I ve been taking topamax — My Migraine Support Forum

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  • It definitely causes severe withdrawal if u forget to take it

  • I remember that as well. If I was late taking it or forgot, I could tell. Ugh, rough stuff!

  • The Dr gave me cymbalta for anxiety and. Depression...I've been on topamax since last July for migraines.. I've only started the cymbalta Thursday and had a headache since the second day of taking it...its nonstop wake up with it ...go to bed with it

— My Migraine Support Forum

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  • After 41 years still haven't figured it out. Weather, raw onions, flowery smells.

  • Aspartame, MSG, red dye #40 #5 and strong smells and quick changes to barometric pressure

  • smell, noise and light

OMG I m so tired of people thinking every migraine is the same I hate living... — My Migraine Support Forum

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  • I understand I have trigeminal neroragial headaches. They r a horse of a different color. I feel with everyone I lose a part of me.im dieing here slowly

  • Right! They're so unpredictable!!

  • I think people think when we say migraine we're being over dramatic about a headache.

Hello I m new here I suffered from migraines for over 9 years I would take... — My Migraine Support Forum

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  • But it is if you sell the product?

  • Why does it matter what my job is ??? I suffer from migraines and it's horrible ...

  • Yes migraines are horrible. I'm not saying that. I'm sorry you suffer. All I'm saying is when you mention a wonderful product and you sell it, it then benefits you. That's all. That's my opinion. Nothing else. I am glad you feel better

I m sitting watching 24 hours in A E I m looking at broken bones that have to... — Cluster Headaches Exposed

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  • We really are hardcore, Jamey. Not for wimps. It sure has hardened us i say with sadness.

  • I've also found out that I've got an incredible tolerance for pain medication. If my wife takes half of one of my pills she's out for 48 hours. I take as many as 8 with little to no affect!

  • Im exactly the same, Jamey, a doctor in hospital once said to me "you're on enough to stop a donkey" and it hadn't fazed me at all. It really surprised him..

Has anyone been on Topamax for migraines I m tapering off it slowly but I m... — Migraine Chat Room

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  • Oh weight loss too

  • Weight loss. I could only do 25mg at night. The doc wanted morning and night, but it made me drowsy. But it was the only med that's really helped. Blood pressure meds make it drop way too much. I've tried anxiety meds and I have horrible night sweats and change sheets 2 times a night. So, Topamax was the only one I could handle.

  • I am on it and I had no side effects from taking it. and it has been since 2016 since i been on it

Hi I have joined this group recently as I was diagnosed with severe vertigo 2... — UK Migraine Support And Advice Forum

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  • Yes i have Chronic Migraine but can get 1 to 10 symptoms but no pain in the head

    Mine are daily never without at least 1 symptom a day

    Sometimes just Aura black n white dots

    Sometimes just dizziness

    But its a neurological thing with me

  • I

    Thank you ladies I rarely have headaches but everyday my ears and eyes are VERY sensitive. I use a computer all day in work and struggles with lines on the screen, noise and concentration, on good days on bad dizzy days it is just hell but I don't know what to do. Thank you for the advice

  • have you had your thyroid checked? x

Hi folks I m also new here Interested to know if anyone here suffers from... — UK Migraine Support And Advice Forum

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  • Not sure if this will be any help but I get pins and needles due to problems in my neck. This is also causing a lot of my migraines. I go regularly to get my neck "done" and can recommend this.

  • Thanks for the advice Penny! Mine is also in my neck and travels into my shoulders. What do you get done exactly? Xx

  • I see a physio who manipulates my neck and shoulders, and "softens" out the hard bits! It can be quite sore afterwards but also a "release". He says he can feel the tense areas going through my shoulders and up my neck which are contributing to my migraines. I definitely feel better for his treatment. I have been seeing him for several years on and off.

Hello im new here I recently saw a neurologist for severe back of head oain... — UK Migraine Support And Advice Forum

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  • So bad that you have to hold your head

  • Yes i have been on my knees a few times grasping the back of my head. The pain is very intense

  • Omg carnt u have the nerve block injection

    Sounds horrid i get Chronic Migraine and can be bed ridden for days n weeks but the pain is bearable nothing like this so sorry

I ve had this pain behind in my right eye for days and it s always there but... — Migraine Chat Room

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  • 70% dull right in my eye/behind my eye and then it spreads to my temple like a piercing pain. I've had it for weeks now

  • can you see an ophthalmologist and have them check your pressures? Not the type that just does glasses.

  • I'm not sure I'll check it out

So last night I started getting a migraine so I tried to Nippet in the butt and... — My Migraine Support Forum

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  • I used to be able to sleep off my migraines but lately thats not working anymore

  • I'm the same can't sleep them off at all I've felt like you for over the last week ☹️

  • "Nippet in the butt"? Wow. Lol. That's "nip it in the bud".