Seeking opinions/thoughts

I have been suffering cronic migraines for the past 18 months, have not been able to work, have lost all my friends. I have just had my second lot of Botox and for the two days since having botox I have had a constant migraine. Is this normal, I have rang my neurologist but he hasn't rang me back. Would love to hear other people's experiences on Botox. I love this site as it makes me realise I am not alone. Take care everyone .thanks in advance

21 Replies

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  • You are not alone . This can be normal . Surprised you weren't warned. Tell your neurologist if persistent despite analgesia they can do occipital blocks . Don't despair.

  • My daughter has suffered from constant migraine for the last 6 years with many different treatments that have not eased the problem. Two weeks ago in desperation she had Daith piercings done. We are now on 16 days with only one migraine which lasted only 2 hours with aftershocks for an hour or so after. Too soon to say it is a permanent help but we are very optimistic . She has suffered from motion sickness but nothing compared to the crippling pain she has suffered.

  • A friend of mine tried this, also. She is 3 weeks migraine-free. I'm going to be next in line.

  • I don't know if the piercing is really providing that relief or if it's just a coincidence. Migraines can come in waves and it's not uncommon for them to just show up and then just disappear. I've had a migraine almost everyday for 4 years- if a piercing could change that for me even some, I would be thrilled. I'm not opposed to giving it a try. Just because a doctor can't explain why it works doesn't mean it can't.

  • Your not alone.. I have a fantastic headache doctor he's one of the best in the country. Look up Andrew Dowson.

  • Have you tried myofascial release? This seems to get rid of my headaches entirely until I repeatedly re-expose myself to my major migraine stimulus: working on a computer....I am a lot like you. I usually have CONSTANT migraines plus 24x7 visual snow and migraine aura. But after myofasical release, the headaches seem to go away for a longer period of time, and my visual problems seem less intense You want a myofascial therapist who has studied under John Barnes to ensure you get someone who is properly trained in this area. My therapist is in the Tacoma area. If you live in that area, I can give you her name.

  • What on earth is 'myofascial release'?! It sounds otherworldy!? If one resides in Britain one is treated to Sumatriptan and little else - six tablets on repeat prescription no less! This is the sole treatment for migraine with or without aura, formerly classic and common migraines. Why they, the boffins decide to change the names is beyond me. As to Botox may I ask why? What properties does it contain in order to counteract migraine? This is also prescribed on NHS I take it, or not as the case may be? Why should one resort to paying for their own treatment - it seems fantastical. I have only been laid low with the latter migraines for a few months. It must not be allowed to dominate and cripple one's life - one must simply learn to LIVE with it!!!!

  • Working through your migraine can make it worse and last longer. Knowing that, I still work through them even though I know I shouldn't. I'm a nurse so it's hard to just tell my boss I need to go home. But if I'm getting them on my days off, I go straight to bed and turn on my lavender oil diffuser. When I wake up it's usually gone.

  • Myofascial release is a form of massage but it is not a typical massage treatment. It lasts a lot longer. As I understand it, the body has this stuff that innerconnects the tissue from your feet up to the brainstem. This is called fascia that can become tight and cause a "straight jacket of pain" throughout the body. During the therapy session, fascia gets released during the massage via pressure applied to the body by the therapist. No oil is used for the massage. Since I have a lot of pain in the back of my head and I continuously expose myself to migraine stimulus of working on a computer (I am a software engineer and am a slave to the computer), I get lots of chronic headaches that last a long time. Myofascial release gets rid of these headaches instantly and the headaches stay away for several days if not at least a week, even if I start working on a computer again. However, if I were to stay away from the computer for a prolonged period of time, I am sure I would not get any headaches at all and this treatment would work for me permanently. I do have another problem though, and that is visual snow that is like having a migraine aura 24x7....no headache, but constant visual static. Some doctors believe that visual snow is related to migraine. I am currently trying to determine if myofascial release is helping this condition. It might be, but I cannot say that for sure since the visual snow relief I have experienced after a therapy session has been temporary. Any relief at all is a miracle to me....if only it would last.

  • Thanks for all replies, I guess different things work for different people, and when one suffers one will try ANYTHING . Not sure where everyone is located but I am in Australia.i have tried all the meds, massage, acupuncture, physio, chiropractors, naturopath. I could go on and on. So when I went to a new neurologist I was more than happy to try the Botox. The Botox was covered by Medicare for two treatments, so I have just had my second and am keeping everything crossed it helps. I must say it annoys me when people just say, "we just have to live and get on with life" wouldn't we all love to be pain free, so maybe a little compassion could go a long way. Rant over

  • Do you or any of your relatives have autoimmune disease of any sort? MaryF

  • I have asthma- not considered an autoimmune disease although people with asthma are considered to have compromised immune systems. Rheumatoid arthritis also runs in my family- both my mother and sister have it. My mom seems to remember Mayo Clinic doctors telling her my asthma would get better but I would develop migraines but that was 35 years ago and she doesn't remember why they said that.

  • If have bad migraines and a history of autoimmune disease in the family get tested for Hughes Syndomre/APS just to rule it out. MaryF

  • I have found lavender essential oils work wonders. I have a portable diffuser that I bring everywhere. It helps prevent my migraines and also helps relieve them. I turn it on in my car, while I'm at work, and when I'm sleeping. I'm a believer.

  • Not that I know of Mary F, I have to admit i have started to think I may have fibromyalgia, I have read a lot on this and I am sure I have every symptom, but......... Doesn't seem to be a test/exam to determine this. Also reading a lot of other material on migraines, many people seem to have this fibromyalgia, would love to know thoughts on this as well from other headache/migraine sufferers. Thanks in advance. This is a really helpful site and makes me realise I am NOT alone in the world of migraines.

  • Fibro is a convenient diagnosis often dished out, but usually Fibro is an untreated under active thyroid, the TSH test is very unreliable, also it is worth being tested for Hughes Syndrome/APS just to rule it out, I have this, and the tests are easy to do, preferably at a hospital as the samples are a bit time sensitive: hughes-syndrome.org/about-h...

    MaryF

  • Not that I know of Mary F, I have to admit i have started to think I may have fibromyalgia, I have read a lot on this and I am sure I have every symptom, but......... Doesn't seem to be a test/exam to determine this. Also reading a lot of other material on migraines, many people seem to have this fibromyalgia, would love to know thoughts on this as well from other headache/migraine sufferers. Thanks in advance. This is a really helpful site and makes me realise I am NOT alone in the world of migraines.

  • I have had chronic migraines and headaches for 16 years and have exhausted all options I did botox 3 times with no relief tried a ton of different medications. My neurologist recently put me on a new regimen to help. It is butterbur, magnesium and riboflavin take twice a day. It seems to help ease up the everyday headache but not necessarily the migraines but still worth taking for me to cut back on the everyday headaches

  • I've been getting botox for a couple years now. The first 3 sessions I got botox they didn't work so I stopped taking it for about a year. My migraines started to get worse so I decided to try botox again and for the most part the medicine has been working. Before this last session it didn't work at all, but honestly, botox is a hit and miss. My neurologist said it works for about 75% of the people given to (if i remember correctly). For me personally it usually lasts about 2 months then I get my migraines again. And botox doesn't start working for about 2 weeks after you get it, so that's why you still have the migraine (or still get migraines) after you get the botox. I'm not sure if/why your neurologist didn't tell you this, but that's what mine told me. Are you on any other medications for your migraines?

  • My first round of Botox made me feel terrible for about two weeks. It could be just a coincidence that you got a migraine after the injections. They don't work right away- takes a few weeks so if your first round has worn off, you could just be going through a bad spell of symptoms waiting for this round to kick in. The injections I got in my neck made my neck very sore and it stayed that way for over a month and maybe even caused a headache. I plan to ask my neuro not to put them in my neck this time. Good luck! I suggest taking a magnesium supplement- it's a natural anti-inflammatory, or use Epsom salt packs on your neck. I've also had a little relief from diffusing lavender and peppermint essential oils in my bedroom at night.

  • I think because we don't look "sick" and still try to function as best we can, friends, family and even doctors assume we are faking or couldn't possibly have a headache that bad for that long. I've had a migraine almost everyday for 4 years...I can't even work anymore. I've done all the meds, chiropractor, PT, essential oils, gluten-free, massage, ENT, sleep specialist, allergy tested, etc, and I still have a headache plus thousands of dollars in unpaid medical bills. Nobody has an answer or a treatment that can give me my life back or even anything close to it. I sleep most of the day simply because what else am I going to do when I feel lousy most of the time and am swimming in debt?

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