Permanent Migraine

[Spinnaker141]

Does anybody suffer from permanent migraine? My daughter has a constant migraine, nausea, vertigo for past 19 months and is desperate for pain relief. She is totally incapacitate by this, she is only 20 and had not even managed to finish school as she is so ill.

[KatherineM_PBC]

I'm sure you will get many replies and will be surprised to hear there are so many living with this condition on a daily basis. You don't mention what the Doc says or if your daughter has been offered medication? You must seek specialist help, not your GP as most don't have a good understanding, get a referral to a Consultant. If you can afford it, pay to see someone at National Migraine Centre, just Google to get their address. There are many preventative medicines available and just last year a new drug was released just for migraineurs, so there is hope for your daughter.

Do some research about diet, many find cutting carbs and processed food, going gluten free all help. Perhaps also seek some alternative therapy such as acupuncture, I'm going for a session today.

On a positive note, I was a Chronic Migraine sufferer a year ago, but am in a much better place now, occasional bad headaches, but certainly nothing on a daily basis that was ruining my social life and stopping me from going to work. I did have vertigo too, but all that seems to have passed - it was an awful time in my life and I have huge sympathy for your daughter, but there is hope :-))))

[Spinnaker141 in reply to KatherineM_PBC]

Thanks Katherine. It seems to us that she has had most medications currently available but nothing has even dented the pain (and acupuncture and an osteopath etc). She is currently having Botox but as yet nothing positive. She is at her wits end as her quality of life is minimal, she has also lost the sight in her left eye, which coincided with her use of Topiramate but her neurologist says its down to stress. Things appear very bleak at the moment.

[KatherineM_PBC in reply to Spinnaker141]

Can you list the medications she has tried and how long she was on them for? For example, I am taking Amitriptyline, when I started on the lowest dose I felt dizzy but had to push through 10mg ....20mg....getting to 50mg was hard, but only at 75mg did I get the relief I am experiencing now. I nearly gave up at 50mg and said it wasn't for me, when I just needed encouragement and support to push on.

I have had disturbed vision in my right eye ever since the migraines started, although that too is going now.

So she has been to see a Neurologist, can you be referred for a 2nd opinion? Do also contact the National Migraine Centre, you might think that a Neurologist would know everything about migraine but there are so many neurological conditions that they often don't specialise in migraine pain.

Definitely look at diet, I have even read that starving the body of any food 24-48 can break a cycle, although I've never tried that.

Wishing your daughter well. xx

[Spinnaker141 in reply to KatherineM_PBC]

Hi Katherine

I'll have to wait until I get home to check the meds but I'll let you know.

Interestingly I have also read that a 3 day fast will reset your body and we did give it ago but my daughter struggled as it made her feel even more nauseous and she stopped after 24 hours or so. Maybe we'll give it another go as she maybe needed to supplement her salt/electrolyte intake. Constantly feel like we are floundering in the dark but hopefully we will hit on something that works for her.

[Onthemove1971 in reply to KatherineM_PBC]

I love this post but would also ask if she is trying injectable medication. I use Imitrex 100mg in pill form and injectables. It really stops many of mine. I am also given a cocktail on the hospital of Benedril, Imitrix and anti-vomitting ( I don't vomit but this mix always reduces my pain) all IV with hydration.

I really would consider dosage also. Most Rx's for Imitrex is only 50mg, that would not even deny my migraines.

Best of luck, I have not found diet to work for me at all. Many trials and not helped. In fact for me it is the opposite if I withdraw foods. Especially craving.. Every Specialist always tells me to feed my cravings..

[ticc1212 in reply to KatherineM_PBC]

Hi Katherine, did acupuncture work? I had three sessions and didn’t go back because I wasn’t sure it would really help. I was told it could take several weeks before I feel relief from headaches and dizziness and the cost was $30 per session with my insurance. How many days a week did you go?

[KatherineM_PBC in reply to ticc1212]

Hi. It's my understanding that acupuncture sessions should only be scheduled once a week - that's how often I go to see my therapist. She is a spiritual person and the session is relaxing and helpful in others ways than the needles, so find a good therapist. Acupuncture doesn't treat 1 area, in that, they look at the body as a whole and try and rectify any imbalance, if this helps the headaches eventually then great but I wouldn't expect any improvement in 3 sessions. I have changed my diet significantly, no gluten and less carbs, had the daith piercing and take a preventative med and migraine supplement - perhaps if you continue with acupuncture and make other changes too you will find what gives you relief too? Best wishes.

[ticc1212 in reply to KatherineM_PBC]

Thank you very much! I have already changed my diet, except I still drink decaf coffee once a day 12 ounces. I don’t eat carbs except for healthy carbs and not a lot. I will give acupuncture another try. Have a great day!

[Gaysie in reply to KatherineM_PBC]

Can you advise what the new drug was. I live in NZ. We have no migraine clinics here. I have had migraines sin e I have birth 2 my second child at 23 and I am now 66.

[KatherineM_PBC in reply to Gaysie]

Hi, the newest drugs are the CGRP drugs like Aimovig. They are available on insurance in USA and Canada I believe, private prescription in the UK is very expensive. There aren't many people on here it seems to have tried it, but there are a lot of Facebook groups you can join and read people's experiences. A consultant I spoke to says it has only helped 50% of sufferers who have taken it, the others giving up with either no benefit or nasty side effects so it's not quite what they claimed!

[Gaysie in reply to KatherineM_PBC]

Thanku for your reply. NZ is obviously way behind in medications.

[Hidden]

I sympathize with your daughter. I have had migraines since a teenager and have tried many treatments over the years. Please don’t take this the wrong way but maybe your daughter is inder stress perhaps from school. Is she an anxious person. Stress presents itself in different ways. Maybe seek the advice of a doctor about anxiety and/or depression. (They usually go hand in hand). There are treatments that may help. Good luck. I hope your daughter finds relief soon.

[Spinnaker141 in reply to Hidden]

Thanks Dove2259. I appreciate your taking the time to comment. Unfortunately she is no longer is school - she never finished as her pain is so bad that she is at home alone all day while I'm at work. Could well be that stress was a trigger but I think we've gone way beyond that now and before this started she was actually in a really good place as she'd only just got back to school after having major back surgery. No straight forward answers!

[MaryF]

My daughter and son had the same thing, much better now, is there autoimmune disease in your family on either side, including Thyroid? Any relatives past or present with autoimmune conditions, problems with miscarriage, heart attacks or strokes at an early age etc. If so, I can let you know what we found out, as they have come through the other side now. MaryF

[Spinnaker141 in reply to MaryF]

Hi MaryF,

My sister has a thyroid issue and both parents had heart attacks before they were 60 (which is early to me!), even though they were both fit, slim and seemingly healthy. Also, when she was born, my daughter had a hole in her heart. Very difficult to know what is relevant and what's not! Glad your children are much better

[MaryF in reply to Spinnaker141]

It would be worth getting the GP to test her for Hughes Syndrome/APS, I have this and so do all my children, it is like a cousin of Lupus, and the migraines are terrible they tend to need either Aspirin or anticoagulants. I enclose the symptoms and also the blood tests. I also checked out their vitamin D, B12, folate and ferritin, they both also take magnesium alongside their Aspirin and B12 injections. Does your daughter ever have a sort of blotchy mottled rash that comes and goes?

ghic.world/hughes-syndrome/

ghic.world/hughes-syndrome/...

I will add that it is a disease frequently and dangerously missed by neurologists, if you think it is likely, it is easy to treat and my patient forum, holds a list of specialists who do actually understand the condition. Come back to me if I can help further. MaryF

ps dailymail.co.uk/health/arti...

[Spinnaker141 in reply to MaryF]

Hi, thanks so much for this. She doesn't have a rash - but we will pursue this, as in addition to the thyroid, heart attacks etc I also had an uncle who had ms so you just never know.

thanks again.x

[MaryF in reply to Spinnaker141]

Sometimes the MS is misdiagnosed and turns out to be Hughes Syndrome/APS. I am a trustee for the charity above so do please come back to me if needed. MaryF

[PeggySueR in reply to MaryF]

Hi MaryF. Sorry to jump into this post but i have recently been diagnosed with chronic migraine and have also discovered a family history of hashimoto. Although I've been tested my results showed abnormal but insignificant. It's been ongoing for 7 years and i do suffer from a rash when it flares up, especially across my chest. I haven't heard of Hughes syndrome before but this correlates with a lot of my experience. Can you give any more advice? Thanks.

[MaryF in reply to PeggySueR]

First bit of advice, often Neurologists ignore this condition, even though to us who have this condition, we get very clearly that sticky blood would affect the brain! So I enclose below the charity website, on the charity website, under the section on Hughes Syndrome, Hughes Syndrome/APS, is a sort of cousin of Lupus. You can read about the symptoms, and also scroll down to main tests. Your GP can order them, but do them at the hospital as the samples taken are time sensitive. We have a forum on here, but do also stay on this forum, as it is very good. ghic.world/

The trio of disease is often Hughes Syndrome/APS, Sjogrens Disease and a Thyroid problem, often not picked up as the NHS does such scanty testing. Most of us order our own Thyroid tests to get a better picture, and also join Thyroid UK on here. If you let me know what area of the country you are in I can send you the list of specialists in your area, although there are some on the front of the charity website above.

It is crucial to see a specialist who understands the condition not one who only has half the knowledge.

ps if you get that rash which is called 'Livedo Reticularis' it is an idea to photograph as evidence for any doctor you see.

MaryF

[Loulou1922]

I’m so sorry to hear this about your poor daughter. I am in the same position however my vertigo started to be chronic at 29, (migraines before) she’s so young to have her life snatched like this, it’s so sad.

If she is able to travel then there is a consultant neuro who seems to be one of the best in the field for migraine with vertigo. His name is Dr Surenthiran. He works at blackheath and Kent. I am hoping to see him soon myself.

Most neurologists aren’t specialised enough to treat us (I’ve been to so many). To say your daughters visial disturbance is down to stress is an insult! I don’t know if she’s tried these but I’ve heard good things from sufferers on this forum about pregabalin for migraine pain and vertigo and also flunarizine (unlicensed). Please do not give up hope, I always tell myself this - all the people that recover enough to resume normal lives are too busy being happy, enjoying life, to announce it on forums. Ps if she is taking any paracetamol or codeine they could be making things worse (I know this myself, and how hard it is to not take them when you’re in so much pain), I wish your daughter lots of luck with getting some improvement x

[Spinnaker141 in reply to Loulou1922]

Hi Loulou1922

Thanks for your response. I am always on hand to ferry her around so I'll definitely look into the consultant you've mentioned as we will try anything and I also think that finding a sympathetic consultant is part of the battle. As you say, so many of them really don't understand the implications of migraine and the extent of suffering.

She has had pregabalin but it don't do anything and she currently doesn't take anything at all, including paracetamol and they are ineffectual.

Best of luck with seeing Dr Surenthiran

[Loulou1922 in reply to Spinnaker141]

Thank you and to you too, I really hope she manages to find some improvement x

[Loulou1922]

*visual

[Alexa49]

Hi I have chronic migraines and hemiplegic migraines the pain can feel permanent but its not there are various different triggers to migraine, it can be food, lights, drinks, something in the living environment, scents, etc. Has your daughter had MRI scans of the brain to check for white matter lesions often with migraines that can happen, as well as genetic testing for migraines. Sometimes small blood vessel disease can cause horrible migraines, its called CADASIL. My migraines got worse in my mid twenties and finally at 34 I just got the limited CADASIL genetic testing done, will find out the results this upcoming Thursday. Please get her a brain MRI and BRAIN SPECT looking for hypoperfusion but she does need to have a migraine during the BRAIN SPECT testing to measure for hypoperfusion. A BRAIN SPECT studies the functional capacity of the brain while an MRI looks at the structural components of the brain. BRAIN SPECT also looks for anxiety and depression not just migraines so an MRI and BRAIN SPECT are useful diagnostic tools to diagnose the type of migraines that a person has and helpful for potentially matching up medications.

[Spinnaker141 in reply to Alexa49]

Hi Alex49

for my daughter, its not about triggers (I think) as the migraine came and never went away. She would say its always a base of 9/10 (and ramps up from there) - one doctor laughed at her saying a 9 because HE said this was akin to childbirth but as as neither she nor HIM had given birth I didn't really understand how he would know! Prior to the migraine my daughter had 4 broken bones in her back (bi lateral pars of L5 & L3) which she walked around with for 3 years before anybody took her seriously. It was excruciatingly painful so I think she has a pretty good idea about pain levels.

She has had an MRI on her head but we were just told that this didn't show anything but we didn't know enough to ask proper questions so I will go back and ask about lesions etc. I hadn't heard of CADASIL so i'll do some reading up and also ask about that.

Thanks so much

[Frodo]

Autoimmune conditions, temporomandibular problems, tooth infection, hormones, allergies, viruses, bacterial infections, post viral syndrome (ME), B12 deficiency /metabolism issues, neck problems leading to cervicogenic headache (often confused with migraine), ear problems, low magnesium and other issues mentioned by other people here - these are just some of the issues that can exacerbate or trigger migraine or masquerade as migraine. Medication itself can cause or exacerbate problems. It's very hard to get to the bottom of it. Sometimes it is "just" migraine, which is very serious in itself, but it's a diagnosis by exclusion really.

It's really important to not be fobbed off with 'stress' as a cause for a physical disability like this.

I have found a triptan which works for me. I was afraid to take it for many years as I was concerned that I may have a cardiovascular risk and an auto immune disorder which might make it unsafe, and the migraine (previously episodic from age 14) went on non stop for 12 years. It turns out I do have those conditions, but the triptan is one which has low side effects so seems to be ok so far. I still have migraine approx 3 times per week but can function fairly well with the medication. I found Migraleve Pink helped with violent nausea at one point but the effect didn't last more than a few hours. Ice packs applied to the neck while lying down always gave some relief from the prolonged agony (I'm not exaggerating). A herbal anti inflammatory also helped with the accompanying brain fog and confusion.

[Spinnaker141 in reply to Frodo]

Hi Frodo

I think part of the problem is that our GP isn't interested and our neurologist is not very approachable. One of the first things she said to us was that she didn't want us reading all that nonsense on the internet as she knew what she was doing and didn't want to be questioned on it. We were told that nothing in diet affected migraines other than caffeine and it was actually that the pain centre in the head was stuck. We have (ha, my poor daugher has!) taken all the medications that have been prescribed but I think that the side effects have been hugely detrimental to her without the trade off of actually helping with the pain. I've found a book by an American Dr (not a headache doctor) called angela stanton which i've just started to wade my way through which it to do with dealing with migraines without medication so this may partially tie in with what you've said. Its been heartwarming to receive so many responses on this website and i'm taking lots of notes and will be (hopefully) more informed and proactive when we next see the neurologist.

thanks.

[Frodo in reply to Spinnaker141]

Sounds like you need to see a different neurologist.

[Jeffner]

I had permanent migraine for 2 years was very disabled by it. Still have chronic but much more manageable. The national migraine center is amazing and have helped me tremendously, if you can I see them or have a phone consultation. I also think from my experience once you are having that many migraines you have to just keep trying lots of things and eventually you chip away at it. I have found doing the following helped get me to a more manageable place: seeing an osteopath, acupuncture, feverfew, 400mg riboflavin in am, magnesium malate, eating a vegetarian diet, avoiding caffeine but using it for some milder afternoon migraines, Cefaly device, stick to a sleep routine even at weekends, drink loads of water, no alcohol. I take frovatriptan and domperidone for attacks (max 9 days a month) or 3 aspirin and domperidone (max total drug days a month 12-15). Ice/ice gel pads sometimes help. I am finding Botox is helping too but there are lots of other preventatives, sadly many didn’t work for me. Have had my daith pierced too, which has helped slightly too. Sure your daughter will find something and hope it happens soon.

[Spinnaker141 in reply to Jeffner]

Thanks Jeffner - plenty to go at there - fingers crossed. I'm glad you have made some progress, always good to hear.

[Loulou1922]

Ps Dr Giles Elrington is also excellent, very knowledgable and has an extremely kind bedside manner. He takes the time to explain things to you and genuinely listens to your concerns.

I would try to see these specialists privately if at all possible. The first time you see them you want as much time with them as possible.

[Totmom]

Perhaps look into acetazolamide, bio-identical progesterone and ondansteron (for the nausea). Bio-identical progesterone can be obtained by prescription or over the counter. I really like ona's brand as it doesn't have anything weird in it like propylene glycol. I'm not sure if she ships overseas (if you're in the UK) but progesterone opposes estrogen and usually if she's in her early 20's and she's estrogen dominant that is when migraines start to strike. I would use liberal doses (400-500mg) to start. There are no negative side effects, the worst thing that can happen if you "overdose" is you'll get really sleepy.

Acetazolamide increases CO2 levels in the blood which means that more oxygen stays in the tissues instead of being transferred to the blood where is gets excreted quickly and one can be hypoxic and not even realize it because O2 saturation levels might be normal in the blood but they don't measure what is in the tissues. As a result of low oxygen in tissue cells they actually begin to take up more calcium which is a toxic state for the cells and can result in very painful migraines, etc. Some of the new migraine meds are calcium channel blockers, but acetazolamide is very safe and has been around for over 70 years. It's primarily used for altitude sickness, which I have had and is a very similar feeling to migraines. Furthermore it decreases the amount of lactic acid in your body. Fermented foods like sauerkraut and yogurt increase lactic acid in the body and can become overwhelmingly painful. It's the same stuff that makes your muscles ache when you work out, but times ten because it builds up and builds up.

Ondansetron antagonizes the 5HT3 receptor so it calms the intestine and lowers the amount of toxicity in the gut and the rest of the body. The only drawback is it can cause some constipation because it is so calming to the intestine that it doesn't evacuate as quickly.

I had some of the worst migraines of my life over the past two years and I haven't had one in nearly two months since using these medications/supplements. I hope you find answers for your daughter, I truly feel for her and you!!!

[Spinnaker141]

Hi Totmom,

thanks for that , interesting reading about Acetazolamide, as she's also often anaemic so combined lack of oxygenated cells must surely have a detrimental effect. We are in the UK so should be able to get our hands on it. Will definitely give it a go and let you know.

thanks again

[LarryDahlka]

Hi Im a combat vet and have been having daily migraines for years. and I do have Chronic microvascular disease(white spots in the brain showing up on MRI) But Ive been taking triptans daily (rizotriptan, Naratriptan and zomeg and others to include the new injections) I found relief in the past by only a few things Daith piercing, Capacian cream inside my nostrils, and switching my blood pressure pills from lisinopril, but these were only lasting up to 2-3 weeks each, I think they might have worked because they shocked my system. I have now found something that is working for 20 days now, its a herbal supplement, mostly made up of feverfew, I tried to get it years ago but the supply disappeared. so I was hesitant about posting this for fear the supply might again be problematic. I take 5 sprays under the tongue and after 30 seconds 5 more, in the morning and at night. Its called Migra-Spray and is only available on-line. I hope this helps you, let me know.

[Spinnaker141 in reply to LarryDahlka]

Hi LarryDahlka

thanks for responding, I'm looking into the piercing and will definitely go on line re the feverfew. I did hear of this before I think we tried the feverfew tea but obviously this was not strong enough so I'll see if I can track down the spray. Glad to hear this is working for you, hopefully it will continue to do so. I always think if we try enough different approaches we'll eventually find one that works. I'll let you know how we get on. thanks again.

[zlatica235]

Hi Spinnaker141,

I don't usually write comments but I couldn't ignore your post. I am having a migraines twice a months and they last up to three - four days. I have read and tried almost everything.

Not sure if you've heard about CBD oil (cannabidoil) . Apparently it is suppose to help with a lots things and one of them are migraines?

I bought one just about a week ago so long way to go.

I just wanted you to know this alternative too.

If you will decide to try this option please please buy a good quality and from approved shop or website.

Hope your daughter will get better.

Kind regards,

Zlatica

[Spinnaker141]

Hi zlatica235, I really appreciate you taking the time to respond and you just never know what might work so I'm always open to suggestions. Unfortunately we have tried both cbd oil and balm but they didn't make a difference although I use the balm for any aches and pains that I have and it is really good. I have thought about maybe my daughter should try vaping it to see if that makes a difference but she doesn't smoke anyway and she has asthma so we've been a bit reluctant to try that.

thanks again.

[Hidden]

Yes. I have had constant vestibular migraine for 2 years now. It's debilitating. I am bedbound every day. Tried multiple medicines, diet, lifestyle changes etc with no relief. I am waiting for botox. I definitely recommend trying an elimination diet if you haven't already as it can identify triggers if they are any food triggers. If you aren't currently seeing a neurologist, definitely get a referral because given your daughter's symptoms and constant nature, she needs specialist care beyond a GP.

[KatherineM_PBC]

Hi Spinnaker, it's been a month since you last posted and wondered how your daughter was doing? You were probably overwhelmed with the responses and suggestions from others, it's such a complex disease and no 1 'cure' works for us all. Whilst reading over the posts again, I noted that you said your daughter had major back surgery, before that she was fine and after, the migraines started. Could this be a link? Similarly a friend of mine had surgery on her 'back' they went in through the front of her neck and since surgery she has had the most debilitating migraines. Can you follow up with her surgeon and get some advice there and perhaps they could offer your daughter osteopathy if there is any misalignment or muscle problem. Best wishes.

[licorice99 in reply to KatherineM_PBC]

Hi Katherine, have a look at my reply to Spinnaker...may be of interest to your friend.

Best wishes

[licorice99]

Hi Spinnaker,

you said that your daughter had a spinal injury, have a look at this video re Spinal Fluid Leak

youtube.com/watch?v=QyvWxob...(Not working as expected?)

Also known as CSF leak it can result in an intractable headache, the leak can be caused by: "medical procedures; whiplash; bony, sharp calcifications penetrating the dura; and genetic disorders of connective tissue." I am quoting from some info from The Migraine Resource Centre website, see the following link for more info.

mdedge.com/neurology/migrai...

I have had migraine since age 12. They were episodic but now chronic and I came across this phenomenon whilst doing research for myself. I seems that neurologists can miss this and diagnose migraine.

I really hope things are improving for your daughter

Best wishes

[Brothers]

My has suffered more or less perminent migraine since Jan 19. In March he was diagnosed with acute intractable migraine with cyclical vomiting syndrome . Hes missed 95% of school since it started . We have tried a wide variety of triptans and preventers so far to no avail. Were seeing a neurooligist and a migraine specialist . Im at my wits end as everything is trial and error with know end in sight. Im sorry I cannt offer any positive help but you are the first person/ post that describes the exact experiance my son my is going through.

[Brothers]

Sorry that should have said my son !

When it started I took my son to the GP twice a day he was vomiting 20/30 times a day I was told he was stressed school etc . We got to the point where he was loosing conciousness and feeling in his limbs and couldnt be brought back by me so ambulance and paramedics every other day. 8 wks later eventually found GP who refared us to Neuro and a diagnosis straight away .

Open access to hospital which we were needing several times a wk . I V fluids anti sick meds and triptans . Probably 4th anti sick med before any relief but nothing worked for the pain.

Refared to Addenbrookes Migraine Clinic were trialing our 4th/5th preventitive no joy yet.

Along side all of this we tried osteopathy , crainial ostheopathy , acupuncture , diets , meat free , wheat free , B2 supplement , Q10 and magnesium. Gel pads , tiger balm hot baths .

During all this my son contracted glandular fever , cronic tonsilitus and 2 sever throath infections .

We have a family history of migraines previous to this my son was in perfect health.

My only advice is keep fight dont take know for an answer . I wont accept that this is it for my son.

How is you daughter doing , well I hope