Botox clinic shut: Has anyone else been... - National Migraine...

National Migraine Centre
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Botox clinic shut

Cat00
Cat00

Has anyone else been told their Botox clinic is shutting bc of Covid?

I'm freaking out about it, my Botox ran out a month ago and I've already been getting gradually worse. The letter said that they're sure we'd understand and it's sad we'll all get worse essentially. If my migraines return to their pretreatment levels I'll loose my marbles again. I can't cope with the pain, plus 2 kids under 5, plus a husband who's working everywaking moment.

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I had a phone call to say the my appointment will be cancelled until the coronavirus crisis is over. Due my next lot in a couple of weeks and the last lot have long since worn off so I'm really suffering now. I do understand because it quite an 'up close' treatment and would put both us and the doctors at risk - not to mention that we probable wouldn't be allowed anyone with us to hold our hands. That said, I'm gutted, because the pain isn't manageable now and will only get worst. And I'm now worrying that they didn't mean when lockdown is over but when we have a vaccine/treatment!!

Cat00
Cat00
in reply to DearD

Hello,

Thank you so much for replying!

Like you say I "understand" it is by its nature an intimate process with all the injections it involves, and so is not surprising they've cancelled. But like you say the pain is not manageable. My husband makes machines that test for antibodies so he is working all day and all evening every day since the virus started. I have a 2 year old and a 5 year old and when I get bad I can't look after them properly, he can't take time off work, I just don't know what I'll do, I know I'm not mentally strong enough to tough it out for that long. I've been there enough times before to know I'll end up having another breakdown. I know I'm not dying and it could be so much worse and we've been lucky my husband has stayed employed but non of that will matter when I go nuts..again.

I was told to contact them if I don't hear anything in 4 months, so I guess that is the time frame they are working in at the moment?

xx

DearD
DearD
in reply to Cat00

Oh Cat, I really do feel for you xx

My children are grown up now but I remember those days when I just had to go to bed and pull a pillow over my head and let them get on with it. My eldest was an absolute hero. He would butter some bread and microwave some beans for their dinner and make sure his siblings stayed quite, put them to bed, etc. from about 8 years old. I would never have coped without him but of course I felt so guilty all the time. He has a lovely little family of his own now and I'm so proud of all of them.

Your children are obviously still so young and you really do need some help. Even though we are in lockdown you can have someone visit for caring needs. Would there be a parent or sibling who could help you out at all perhaps by taking them for a day when you need it, as long as they are not in the vulnerable group?

And just to let you know, we are all so grateful to your husband for the valuable work he is doing - he must be shattered. And that gratitude extends to you as well because he wouldn't be able to put in such long hours without your support at home. I will clap extra hard this Thursday (migraine permitting) especially for you and your family xxx

Cat00
Cat00
in reply to DearD

Thats very kind of you to say! My husband has been looking grey lately all day and evening staring at computer screens, they are prototypes so they have loads of things that need tweaking.

Unfortunately the only people I know are also vulnerable, my parents and my best friend are both in the shielding group and have to be totally locked down for 12 weeks at least. Both my siblings live too far away. There must be so many people in my position I don't know what state we'll be in after the lockdown ends. I'm wondering if private clinics might do Botox, still but I presumes it'll be thousands of pounds.

DearD
DearD
in reply to Cat00

When my NHS area withdrew Botox funding last year, my NHS consultant offered to do it privately for £1050 a time. Needless to say I just had to suffer. I was only working (very) part time because of my migraines and there was no way I could afford £4200 a year. Turned out to be a false economy because I eventually lost my job as I was so ill, ironically just before they reinstated the funding!

You mentioned that you are worried about coping mentally with the strain of all this. I know that counsellors are still working doing regular telephone consultations and I'm wondering if it would be worth contacting your GP surgery for the telephone number of whoever does them in your area - they are normally self referral. I know it's a very poor substitute for effective pain relief, I just think it might help you to feel a bit more supported xx

Cat00
Cat00
in reply to DearD

£1050 is less than I thought, it might be worth it to get through lockdown! I could only do it once though can't find that sort of money every 3 months, I thought it was over £2000.

Yes I thought I might speak to the GP as I have to speak to them soon anyway. I could try and get in touch with the pain clinic but they were always very hit and miss back in the day.

Home schooling may defend into a lot of tv....!!

Xx

I was extremely lucky. I was prioritised and got my Botox last week. I suffer with hemiplegic migraine which causes paralysis down the right hand side of my body, very similar symptoms to a stroke. My neurologist took the view prevention was better than hospital admittance.

Cat00
Cat00
in reply to Val135

Extremely lucky and having hemiplagic migraines is not a combination you hear everyday! I don't envy you.

I've been having Botox for years although I had to stop for both my children. The clinic are always trying to stop me having so many cycles but I get worse every time they do. Last time they stopped it we ended up having to get my mother in law on a coach for a 10 hour journey to help me look after the kids but obviously we can't do that now with Corona.

Obviously people like you should have priority anyway I hope you get the treatment you need in the future too.

Xx

Hello so sorry to hear this. You definitely sound like a vulnerable household to me. That should mean that your kids can go to school and/or that your Local Resilience Forum which is co-ordinating volunteer assistance, should be able to offer support with buying groceries, picking up prescriptions and possibly a Zoom befriender to keep an eye on the kids if you are really ill and they are young enough to need it. I would ring your GP and be specific about how much day to day help you now need and they should be able to point you to the Local Resilience Forum. If no luck there try your local evangelical Church. They have been a lot more pro-active than the conventional churches about getting the volunteering act together. Have you or your parents or any other close relatives served in the Forces? If so the British legion or one of the Forces charities might give you a grant to cover private Botox treatment. It does make nonsense of the health risk argument if the NHS wont do it but the consultant will do it privately,. Good luck, let us know how you get on.

Cat00
Cat00
in reply to Katya3

Unfortunately my husband works on prototypes so they are not active within the NHS although one machine is being used in Switzerland in the search for Corona antibodies. But don't think we would get any key worker status.

At the moment I am able to do the shopping, I have to do it for my parents as my mother is particularly vulnerable as she is on immunosupressants. I'm mainly worried about how I'll end up with no Botox in the long run. Every time they take me off it is different, sometimes it's a slow creep towards more and more migraines, sometimes they respond to Triptans. Other times it is within a month and I'm having them everyday. This time its a creep but the Triptans aren't working and I've already had over my quota of Triptans for the month.

Basically I'll have to let it get worse before I can qualify for any help but obviously thats what I'm trying to avoid! I have other fibromyalgia too amongst other things but they still took my DLA away when it all went to PIP so we've never had any help really. Thank you for the suggestions though at least I know there are some things we could try if things start going downhill!

Im in the same boat at you, I completely understand. Im more then a month over due them now already and its really hard x

Cat00
Cat00
in reply to Sticks95

It's all a bit scary, I fought for years to get Botox, 6 years before NICE eventually okayed it. It doesn't always work that well but when it does work its amazing and nothing else touches them normally.

Sticks95
Sticks95
in reply to Cat00

Yeah im exactly the same, i cant wait for everything to go back to normal

Yes, no appointments since covid lockdown started...not just migraine clinics...mental health.... outpatient appointments.... everything..... Really tough times.

Cat00
Cat00
in reply to Shawnie

We're going to need all those types of appointments by the time this is over!

I am unfortunately badly suffering from these closures already.... Not helping my fragile mental health but I know I am not alone.

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