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11 months of dizziness and now headaches

Posted , 18 users are following.

jason61983
jason61983

Hi. I have been suffering with vertigo/dizziness (mainly swaying feeling) for 11 months. The past few months my head has been very strained and tense and I have been getting headaches everyday. I can feel my whole brain in my head (mainly the top and back) and my head often pounds. Looking up my diagnosis of vestibular neuritis (VN) explains many of my symptoms of the past 11 months but I am getting used to the dizziness and fatigue but the head pain/pressure/strain is far worse than the dizziness now. The symptoms I am experiencing at the moment seem to be that of migraine associated vertigo (MAV) as the symptoms people are explaining for this seem to better explain what I have been experiencing the past few months .I wake everyday feeling dizzy and with a very strained head like my head is too small for my brain and it gets worse untill I get a headache (my whole brain aches). The past week or so the headache goes by the next day but for a while it would take two days or more to go away before returning again.

I have had a X-Ray of my neck (clear), Eye check (needed glasses for first time), CT-Scan of head (clear), Paid to see private ENT specialist (said not much he could do. Suggested as fatigue is so servere and I am a heavy snorer for me to have a sleep study. Results say I have severe obstructive sleep apnoea AHI 32), Seen an NHS Audiologist (all hearing, eye, balace tests don't show any problem with my vestibular system/balance system)

I am waiting for an NHS basic sleep study before ethey consider me for a CPAP machine for sleep apnoea. I have an appointment to have an operation to have a deviated septom corrected as I cannot breath very well through one nostril. I also have an appointment to see an ENT specialist on the NHS in April. When I see my GP soon I will ask to go on the waiting list to see an Neuro-otologist as they specialise in the brain and migraines. The past few months I have cut out  caffeine from my diet and I eat very healthily attending slimming world and I have lost 6.5 stone in 16 months. It has not been easy loosing weight when I have been ill and feeling low but I have made it my missin to loose weight since becoming dizzy. My heart goes out to anyone with this condition. It is an invisible illness and most people don't understand or believe you are unwell. Please stay postitive. My life has changed dramaitcally the past year and I am house bound most days but I have learnt to appreciate the little I can do and the great friends I have. My hope is fading that someday I will wake to find this problem has gone but at least there is some hope still within me. Take care my dizzy friends and may we all recover from this hell in 2015 x

6 likes, 179 replies

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  • jason61983
    jason61983

    Posted

    update.......

    Been taking Nortriptyline for 3 weeks now. Started on 10mg a day but it made my blood pressure high so I reduced dosage to 5mg for 2 weeks and past week I have been on 10mg. Main side effects are bad taste in mouth, thirsty, mild constipation and vivid dreams. I have seen no real benefits so far but I have had a cold and cough the past week and my head pressure, dizziness and headaches have been the worst in months. Hopefully It is down to the cold I have and will pass soon. I was told to take 10mg for 2 weeks and if I have no bad side effects to then up the dosage to 20mg. I have a lot going on at the moment so I am reluctant to up the dosage to 20mg right now. They make you very tired and light headed after taking them at night and I am worried that 20mg will make my blood pressure go up again. I have read that some people had no benefits from Nortriptyline untill afte they we on 20mg or more and had been taking them for 2 months. A part of me wants discontinue Nortriptyline but I want to give them a fair trial and at a higher dosage. Any help/advice/experiences with Nortiptyline would be very much appreciated.

    Thanks guys x

    • Soooze40
      Soooze40 jason61983

      Posted

      Hi Jason,

      I've been on notrip for just over 1 year now, following a diagnosis of silent migraine. I started on 20mg at night. Had all the side effects including palpitations, dry mouth, nightmares etc. It started working after approx 6 weeks. Then after approx 7 months I started getting dizziness/lightheaded feeling back. Doctor suggested increasing dose to 40mg per night which I did and still do. Symptoms are kept in check foe me at this doseage, with only the odd day where I feel dizzy and disconnected. I wouldn't be without it. Lifesaver.

    • jason61983
      jason61983 Soooze40

      Posted

      I am very glad that you are getting on ok with nortriptyline and it is helping. I may ask to give it another go myself. The palpitations and high blood pressure were worrying me so I discontinued it before. Have you been checking your blood pressure? I read somewhere that some people take betablocker blood pressure tablets along with nortriptyline to bring their blood pressure down. Maybe I should discuss this with my GP. Best wishes.
    • anne05147
      anne05147 jason61983

      Posted

      Hi Jason just found the name of the thyroid disease - it's called Hashimotos disease.  Anne.

  • alison17886
    alison17886 jason61983

    Posted

    Hi jason been suffering like you for 3yrs constant im on nortriptelene and stematil takes the edge off and thats about it I got vestibular migraine and been told il suffer this for the rest of my life ive had mri scans xrays been to see neuros ent and audiologists and still in the same place I am like a recluise I dont go out because of it its a hell of a thing my opinion they should do more study on dizziness cos no1 I have seenknows much about it hope you feel better soon cos I got no quality of life at all .
    • jason61983
      jason61983 alison17886

      Posted

      Sorry you have been suffering so long Alison. I have had this for just over 3 years too. Yes there are too many of us with this and more studies need to be done I agree. I know how you feel but please try to get out a little. Best wishes.
  • jason61983
    jason61983

    Posted

    So fed up with the constant fatigue which has been worse for 4 months now. I have given up on my GP. GP's seem to just fob me off with blood test after blood test but they never want to go into any detail on the blood work results. I have been told a few times over the past 3 years that my thyroid is a little low but not low enough to warrant medication. We are all different when it comes to vitamin levels and thyroid hormone levels. How can they know if our levels are right if they never knew our levels from when we were well? We do not all fit into the text book normal ranges and we should be treated by our symptoms. I have paid to have a private blood test (full thyroid and vitamin B12 and vitamin D). The results show that my reverse T3 ratio hormone is low, my B12 is just below the middle of normal, my Folate levels are at the lowest range of normal and my Vitamin D levels are low. The private doctor suggests that I take 400-800iu of Vitamin D suplementation per day. I also paid for a Cortisol test where a mouth swab was taken 4 times for one day. My cortisol (stress hormone) levels were high during midday and afternoon. I have started Vitamin D supplements today along with my usual multivit, omega 3 fish oils and Q10. I also take magnesium at night. I have read that low reverse T3 levels can cause hypothyroid symptoms in some people. Also low Vitamin D levels can cause fatigue. Any help or info would be much appreciated.

  • anne05147
    anne05147 jason61983

    Posted

    Hi Jason  it took me 3 years to get diagnosed with silentt migraines, ENT were a waste of time.  I asked my GP to refer me to a otonuerologist, he said ENT had wasted my time and had he seen me sooner he could have helped me sooner, but now it would take longer as the silent migraines were affecting my balance and vision.  At one point I was so bad I thought I had MS.  I also have BPPV and he said not to get the 2 separate conditions confused.  You say you have thyroid concerns and there was someone else on this site who found that was causing their dizziness.  I can't remember the name of their condition, sorry.

    I also had low vit D levels and am still on a much higher dose of Vit D, 40,000.  for 3 months and then back to lower dose as once vit D is depleted a normal dose supplement cannot help replenish the short fall, but obviously getting out in the sun helps and worse in the winter.

    Getting a diagnosis is very slow, like looking for a needle in a haystack.  Hope you get a diagnosis soon.  Tell your GP you want a referral.

    • jason61983
      jason61983 anne05147

      Posted

      Hiya Anne. I hope things are better for you. You have been through hell. I have been seeing a neuro-otologist for a few years now. I have been diagnosed with Migrainous Vertigo (aka MAV migraine associated vertigo/silent migraines).

      I have tried all the usual culprits - amytriptyline, nortriptyline, propranolol, gabapentin. They all made things worse or had horrible side effects for me. I have read about hashimoto's disease. I am certain I don't have that as my other levels are just about in range. I am very gratfull for your input though Anne thank you.

      Your Vitamin D must have been very low for you to be taking 40,000 a day. Did you know that it can be toxic to take such large amounts of vitamin D? Look it up. I don't mean to worry you. There are many people prescribed such large amounts but for a short term usually days not weeks or months.

    • anne05147
      anne05147 jason61983

      Posted

      You're most welcome.  We can all offer one another suggestions that we pick up along the way. Thanks for the Vit D advice Jason I will look it up,  but I maybe I should have made clearer I am taking 40,000 units of vit D once a week not daily. I have felt more energised since taking it with less joint pain,  but don't obviously don't want to take it if it's too high.  My vit D levels were sub normal. I have another 8 weeks left to go on this dose of once a week and then I will take a normal supplement.

      I still get some dizzy/fuzzy vision days but mostly when I eat chocolate and nothing compared to how I use to be when it was at its worst.   I still take nortriptyline 10mgs which seems to have worked well for me, but it does cause constipation and I would like to try and get off it as don't like taking meds if I can help myself in other ways. I take the nortriptyline at about 6 pm so not too close to bed time and as I've always been a vivid dreamer without it I have not noticed it giving me nightmares because that is something that I might not have made the connection to the Nortriptyline,  Everything affects individuals in different ways.

      I continue to take the nortriptyline because I think it has also greatly helped my neck and shoulder pain.

      I have also retired from nursing since April after 30 years of shift work, days and nights, and now have more time for myself to eat regular meals and have a proper sleep routine, so think all these things should help also.  Past few days I felt wonky but had some chocolate and also came down with a cold today, so could be part of it.

      Our local GP is very hard to get an appointment with as we don't have a GP.  It's been in the national news papers.  They are relying on locum cover and I am going to try and get another appointment soon to go back and get the Vit D levels checked out again.

      Hope we all feel better soon but it usually isn't something that is easily resolved as our balance etc is very finely tuned.  Now I have more time I am going to try and take up Yoga and hope this will help also with balance and posture.  I think this problem has to have more than one approach and attack it from all sides as I am starting to believe it is rarely just one thing but a combination of at least a couple of things, both physical and emotional and stress plays a big part of making it worse.

       

  • nat20124
    nat20124 jason61983

    Posted

    Hi Jason and all other sufferers. I'm a 25 year old female from Australia & can relate so badly to all your symptoms. I had a random spout of vertigo that lasted two weeks at the beginning of this year I was totally fine after 2 weeks. Doctors just said it was an inner ear infection. I went to Fiji in November and went on a 3 hour sail boat ride and became very sea sick. Ever since then I have not been the same. A constant fullness feeling in my ears, a full feeling in my head, alot of pressure behind my eyes, nausea at times, stiff neck and it always makes a cracking noise. Had to cut out tea coffee,chocolate and salty foods. I went to see a ent specialist he's sending me for an mri and hearing test. But I really believe I have what you guys have been describing. Why are doctors so clueless and lack knowledge in regards to this?  I'm so over feeling like this it's only been 2 months so I can imagine how you guys must be feeling. 

    Does anyone have any advice on what I should do from here? Thanks so much 

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