Daily Servere Migraines, dizzy, nauseous, Doctors are clueless!

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About 7 years ago I got really sick and I could hear something getting louder in my ear, almost like hearing the ocean in a sea shell, then after getting louder and louder I heard a pop. Silence. I had a cold or the flu, I dont remember it's been so long but started experiencing migraines with this noise and slight lightheadedness after getting better it would very randomly occur. I went to the ER a couple times and they said I had an inner ear infection and gave me antibiotics which never helped. Finally after three years and no help, I had tried multiple things as far as medication like alieve, advil, ibuprofen, yet nothing except excedrin migraineor extra strength that is it. Since that would provide temporary relief I stopped asking for medical help. My symptoms proceeded to get worse I was taking more and more medication daily, So I decided to start seeing doctors. The pain from these migraines are disabling. I get weak, dizzy, nauseous, the pain feels like a screwdriver being drilled into my temples while I'm wearing a helmet that is to small and my head feels like it's swelling out of the helmet and its very heavy. I've tried medication prescribed for migraines with no relief, I have changed my diet. I eat alot healthy now and drink lots of water. I rarely eat sugary junk or eat out. One doctor was concerned I had a brain tumor but I had a CT, MRI, MRA, and blood work and even X-rays but it seems I'm perfectly healthy. The ringing/ocean in my ear has gotten worse, I'm not sure the last moment of silence I have had in years. I am now up to 8 pills daily and my scans were done 3/4 years ago and I've seen maybe 8/9 different doctors in the past 7 years, I've lost my job and working part time and it's been a year since I'v held insurance because this has effected my work with my attacks. I have some days when it gets so bad I've not been able to physically walk or drive and I'm so lightheaded that I am shaking and I have to lay down. My memory has suffered, I cant seem to remember what I had for lunch, my daily motor functions, like my typing is poor I'm having to correct almost every word because I'm continuously hitting the incorrect keys and I used to fly on a keyboard, I've started experiencing cotton mouth, and I will be mid conversation and completely say something different than what I am actually trying to say. Like for example we were discussing food at work and I went to say peach cobbler sounded good and I said corn something, it confused everyone including myself. I could picture peach cobbler and said it in my head but the words wouldn't work out loud. My migraines get so bad I'm crying and throwing up. It's been 7 years and I've tried oils, medicines, doctors, nobody knows what's going on and they cant find anything. I have begged for help. This is physically exhausting and this is not living anymore. I'm calling around getting prices for a cash patient to now get tested for manieres disease. Does anyone else deal with this? Doctors seem clueless, I will be getting a job with insurance soon. I'm pretending everything is fine and I have a few interviews coming up. I want to go back to see Doctors but I dont have the money to spend seeing a bunch more doctors and useless tests. Does anyone have the same issues and any advise on the next step? I'm planning my wedding very slowly but this is no life to live so things are on hold until we figure this out and I hate putting my life on hold because something is physically interrupting my life and nobody knows what.

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  • Posted

    Hi Sierra I am so sorry to hear that you are going through this. I first started getting painless migraines when I was 14 and even though the pain was not bad I did suffer from visual disturbances, loss of sight, paralysis down one said, cognitive problems and speech and understanding problems. When I was pregnant with my second child I was getting them more frequently and I had enough so I went to a seminar on migraines where a chiropractor was talking about the link between neck misalignment and migraine. I immediately went to see a chiropractor and he changed my life forever. I was migraine free for over 10  years until about 2 months ago when out of the blue I had one. He told me my neck was so bad he was surprised I wasnt suffering more. After my last visit to him I try and keep my neck in shape so hopefully I can keep the migraines at bay. It is worth a shot to  check it out and it sure cant help. I hope it does help you because it sounds like you have exhausted ever other source of treatment.  I hope this helps and I hope that you will be migraine free one day soon. Take care.
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    • Posted

      I will definitely give someone a call and try that, at this point I'm am willing to try anything. I've even considered moving somewhere to where marijuana is legal an try that. I've tried the oils and they helped a bit like my excederin does but it just helps the pain to become more tolerable. I'm worries there is something more and i dont want to be on pills for the rest of my life. My doctor is concerned about my intake of excedrin but when I dont take anything I become bed ridden because I am so sick I can not even roll over in bed without throwing up. Thank you for your insight, its definitely worth a shot!

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    • Posted

      Hi Sierria you are welcome (I apologise for spelling your name wrong the first time) but please be cautious about using recreational drugs to treat migraines. Maybe hemp seeds would be better. How does your neck actually feel. Can you move it freely from side to side with no pain. If not then you most definitely have a misalignment somewhere. Also look into magnesium deficiency as my naturopath immediately told me to take this supplement when I told her I had a migraine recently. Also vitamin D and B vitamins. I was really low in D and B12 which causes many problems. Feel free to let us know how you get on with any of these recommendations.
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    • Posted

      I was very careful with the drugs. My mother helped me because she is willing to help me try anything and I work for her so she is ok as long as I speak to her privately about it, so I had taken a couple days off work and actually stayed with my parents to try it out. It helped some but all i did was sleep so its definitely not a long term solution. As far as vitamins I have been trying to improve that, so next paycheck I'll look for those and add them to my daily routine!

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  • Posted

    Hi Sierra, I presume you are in the States??  It sounds to me things are no different there than they are here in the UK.  I have been suffering migraines for over 40 years, have seen more doctors and specialists than I care to remember and not one of them has ever done any good, all they wanted to do was pump me with drugs and I have never even been offered an MRI or CT scan, I also suffer from tinnitus in both ears, which is similar to what you have and have cervical spondylosis which doesn't help with the pain in my head.

    At the beginning of 2018, I had had enough and was getting seriously desperate, on average 12/15 attacks a month and I could barely function, running my own business was becoming damn near impossible.

    In the end I decided to do the research myself, the internet is a brilliant place for this.

    I agree with what Rydia said about a chiropractor, I visit one every 4 weeks for my CS, she is a life saver.  I have also in the last 4 months changed my diet radically and have halved the amount of attacks I have.  I am on a gluten, alcohol and chocolate free diet, also low carbs and low sugar.  I have also stopped eating citrus fruit and nuts.  It may be worth you looking into this, I know you said you have a healthy diet, but sometimes it's worth taking a second look at it.  Fantastically I have lost a load of weight aswell, which is a bonus.

    I can only give you the advice that reflects my experience, but don't give up, you will find a solution. 

    Hope you can go ahead with your wedding sooner than later.

    Good Luck

    YL x

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    • Posted

      Thank you for the response! I'm glad seeing others who have found some relief it does provide hope that I can get this under control. I've given up so much food that I enjoy it's hard dieting especially seeing no relief, I dont consume much sugar except the occasional dark chocolate bite or two to curb the craving for sweets. I am eating alot of greens, nuts, and fruit when I really need something sweet. I do a little bit of chicken or bacon here and there but not much so it's very much a low carb, gluten free diet. Which wasnt too difficult switching into as my mother has celiac disease and I had my gallbladder removed when I was in high school and I had to drastically change my diet then, so the transition was fairly easy just not fun! Oh and yes I am in the states and it's sad to see the help is the same elsewhere, but that is why I have given up and headed to the Internet for help because I just cant live like this, I need a solution. We have put off the wedding because I could imagine trying to raise a family right now with what I have going on. I want to get better so when we get married and have children I am able to give my 100% to my children. I will definitely be looking for a chiropractor to see if it helps!

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    • Posted

      Hi YorkshireLass

      How long have you had the tinnitus in your ears?  I sure have that issue and not sure if it happened because of of taking my Rizatriptan ( only when needed ) or the low dose Prednisone I need to be on?

      your thoughts and others on this subject.."

      thank you

      Wendy

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  • Posted

    Well it sounds like you already have a lot in place regards the diet, but stick at it and you'll eventually get there and hopefully find the trigger.  I haven't actually found a trigger yet but the combination is making life easier.

      

    Have you had a look at some of the Facebook groups, I'm a member of a couple of migraine ones and there are loads of people similar and believe it or not worse than us!!  It's worth joining up for more advise.

    YL x

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  • Posted

    Hi Sierria

    I am sorry to hear about your migraines.  I get them as well but not as often.  When I start to feel one coming on I take a Rizatriptan ODT 10 mg right away on the onset of headache and if I am able I will lay down for a bit.  If not the Rizatriptan works really well. The important part is taking it on the ONSET of headache for it to work.   If after you take the Rizatriptan you feel migraine still coming on you can take one more 2 hours after ...but no more than 2 a day.  You should not take more than 9 in a month as you do not want to get rebounding headaches.  If you are taking many headache meds you could be getting these rebounding headaches.  If you haven't tried the Rizatriptan ask your doctor but I'm sure you will need to stop the other meds.  Also the sounds you are hearing.....I have had that for a long time now...I can hear okay but I can hear the same sounds in my ear that you experience . Someone else mentioned tinnitus.  I don't know what causes that but sometimes it is annoying. I will mention that at my physical but I doubt it can be fixed..... I have had to take Prednisone this past 2 years low dose so maybe that is a cause.  I am in the US.. please keep us posted.

    Wendy

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    • Posted

      I actually tried this last week. It was awful. Definitely did not work and everything got worse as if I wasnt taking anything at all. After 3 days I stopped and went back to excederin. I took 2 a day for 3 days and I got so shaky and could not stop throwing up and stayed in bed. It was do awful. I have them daily. I dont get much sleep because my migraines usually wake me up and I have them all day long. The excederin will dull it down enough to become tolerable.
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  • Posted

    Sierra,

    It sounds like you are in the states since you speak of the money to spend seeing doctors.  The people in Britain have universal healthcare as do all the other developed countries except the US.  No one goes bankrupt in those countries due to healthcare bills unlike our country where 2/3's of the bankruptcies are due to medical bills.  It is very tragic but the goal of our system is profit. The goal of their systems is to caring for health and prevention.  I worked for a pharmaceutical company for a long time and am familiar with the problems.  

    I've had migraines for many years and have been averaging 5 days a week mainly in the afternoon.  Mine are caused by drops in Barometric pressure, getting overheated and being in the sun, and hunger.  There are 2 kinds of medications on the market now that are indicated for migraines.  One type of drug is the triptans.  They work for almost everyone with a migraine if they are taken at the very first sign or a headache.  They are prescription and are common enough to be written by any family practice doctor.  There are 2 long acting ones:  One is naratriptan and the longest acting one is Froatriptan, but I get that from Canada at Planet Drugs Direct because it is sooooo expensive in the US. Longer acting triptans prevent rebound in studies.  Sumatriptan injection is short acting but works in 15 minutes.  It is easy to inject in the stomach area. 

    The reason Excedrin works is the caffeine in it. It constricts the vessels but doesn't act long and can cause rebound if it's used a lot.  Naratriptan isn't very expensive and would work for 5 hours or so.  

    In past 2 weeks, a new drug is on the market to prevent.  It is called Aimovig and is an injection.  It is free to try from Amgen if you go to your doc and have them order it.  I've used the first injections and can't be sure it is helping.  

    What has helped me is MAGNESIUM.  You need to take 400 mg in divided doses.  Magnesium citrate is the best absorbed.  It can cause diarrhea so take it in small doses during the day at first to see how you tolerate it.  

    Good luck to you. All of us chronic migraine people need all the help and luck we can get.  

    Gaye

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    • Posted

      Hello Gaye

      You seem familiar with the triptans meds.  Are you familiar with Rizatriptan ODT?  It does work well with me unless it's weather related then I need 2 a day......but cannot do more than Three days in a row to avoid rebound headaches.  It appears that it did not work well with Sierra.  I hope she doesn't have rebound headaches with the Excedrine Migraine as I understand that you can get those too with that.  I know our bodies react differently to different meds.  Was curious what you thought about the Rizatriptans.

      have a great day!

      Wendy

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    • Posted

      Rizatriptan is the generic of Maxalt. I did take that a good while and it worked but I felt fatigued and a bit dizzy on it.  I switched to the 2 longer acting ones, naratriptan and frovatriptan to avoid rebound when I started having them more frequently. 

      Weather related are hard for me. No matter what I take now, I still feel bad with cold fronts or cloudy rainy weather. 

      Good luck!!

      Gaye

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    • Posted

      Hi Gaye

      thank you.  I will have to ask my doctor about trying the naratriptan or frovatriptan if it lasts longer.  Most times the Rizatriptan works but sometimes a second one is needed.  Oh Gaye I too have a hard time if migraine is weather related.......pressure behind eyes, etc.....never know what else to take to relieve pressure and usually lasts for 2-3 days.  Which one of the two meds do you recommend?

      thank you for sharing!

      wendy

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    • Posted

      Thank you, my doctor said because of the reaction with the medication and I apologize i get them all confused and i looked and it is Sumatripton and the way I reacted to it she doesnt advise anymore because that alone was over $100 at the cheapest place and because of these migraines and how disabling they are I was fired last year from my job and lost everything and I'm just now getting back on my feet and I owe so much I can not even afford a place to rent right now so im pretty much stuck and can not afford any more pills. I am definitely trying the magnesium and getting more mineral water. I'm going to give it some time and see how I do with that then try seeing a chiropractor.

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    • Posted

      Wendy,

      when I get a persistent headache, I use the sumatriptan injection. It’s easy to do, and always works within 15 minutes. My company had another drug that was given by injection and we always told doctors to have patients do it in the abdomen because it hurt the least there. 

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    • Posted

      Sierra,

      i bought the longer acting naratriptan at Costco, 30 for less than $100. You can also use goodrx website to get better prices. Planet drugs direct is in Canada and where I get the long acting frovatriptan. If you have heart issues, doctors may choose to not give you Triptans , but usually otherwise they are safe. 

      Do try 400 mg of magnesium in divided doses due to possible diarrhea. 

      Good luck to you. 

      Gaye

       

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    • Posted

      Thank you, well I have a few job interviews in FL Friday and monday and so hopefully if things go well I will have a job with insurance and be able to better afford getting things taken care of! I have a friend that has recommended going to one of who friends who have a biofeedback machine and do the all natural approach. Also that colloidal silver stuff she thinks I need but that makes me nervous.

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    • Posted

      Hi Gaye

      is the Naratriptan at Costco price with or without insurance?.i will also try the Magnesium and start with 200mg.

      Thank you Gaye!

      Wendy

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    • Posted

      Wendy,

      It was without insurance. I have insurance, but it was less expensive and I could receive more drug without using it. 

      Gaye

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