11 months of dizziness and now headaches

hi ive been suffering from dizziness for 3 yrs now im virtually housebound propanalol made me ill i had to come off them also pitzofen im on nortriplene now dizziness is bad most of the time i just give up seen no endless amount of doctors they havent got a clue i lost my job as well its a hell of a thing but i just try and get on with things i know how you are feeling believe me hope it goes soon for you

Sorry to hear you are suffeing too Alison. I am currently on my 4th day of 10mg Nortiptyline. Going ok so far. Thought it was helping as I have had a good few days but a short bus trip today (to collect my prescription of Nortriptyline! lol) made me very dizzy and the head pressure is back.

Only side effect worth mentioning for me is dreams/nightmares all night. I almost nver have dreams. None that I remember anyways. Hope you find relief soon.

After  2years 7 month I finaly had an MRI Scan recently. All clear thank god!

I've been on nortriptyline 10gs for over a year with a good recovery for silent migraines which caused MAV.  Still have an off day now and again but nothing like before.

Hello Anne! How time flies,,,, Glad you are doing well and the Nortiptyline is working for you

Hi Jason, bit concerned as now consultant wants me to gradually decrease and stop, guess I have to try but it has also worked really well at relieving my neck/shoulder pain and at such a low dose I am hopeful I can remain on it but think my GP may want me to switch to cheaper amitrityline which has more side effects.  He already tried to switch me once before saying the cost of nortriptyline was much more expensive but I told him the consultant said this shouldn't happen, so i was kept on it. I also now realise that cheese and chocolate adversely affect me and cause the visual vertigo.  As I have silent migraines it is only the visual vertigo which is the aura of the migraine that makes me aware I am experiencing the brain storm.  I hope nortriptyline works as well for you as it has for me.  I no longer walk along the road like the drunken sailor

Hi Anne. Nortiptyline costs pennies per tablet. I am glad they eventualy agrreed to keep you on it. Sorry to hear of your visual problems due to migraine. I myself only have mild visual distubances when I am at my worst or when I wake with a bad headache (like today!). I was told to take 10mg Nortriptyline for 2 weeks and if I see improvement and no bad side effects to increase to 20mg. Thanks for your support. Best wishes.

Thanks Jason.  Keep in touch and let us know how you're getting on.  I also have recurrent BPPV but now I at least know the difference between the two. 

The consultant said our brains are plastic and adapt over time and that it would take longer for my brain to heal as it took a long time to be treated as it would have healed faster if i had been diagnosed sooner.  He said the oldest person he had treated hadn't started getting symptoms until they were 90.  Nortriptyline, compared to all the others meds I was given by my GP for this, is the only thing that has made any difference.  For myself I cannot recommend it enough.  Hope it works for you too!

Hi Anne. How are you getting on ? Are you still on nortriptyline ?

I am not in a good place right now. My head has been getting worse again the past few months. Head pressure, dizziness, fatigue, earache, head hurts all the time but not a headache if that makes any sense. I get bad headaches every few weeks that last for 2 days. Right now things are starting to effect my mood and mental health more. Thats what is scaring me to be honest. A few months back I was put on gabapentin. Started on low dose. I only took it for one night. It hit me for six. Extremely drowsy after taking it, low mood the next day along with a 3 day headache one of the worst headaches since all this began. I am due to see the specialist again I think in june where we will discuss alternative medication once again. I have not been to the gp in a few months as I beleive there is nothing more they can do. I dont feel like explaining my symptoms yet again. Sorry if I come across as having a moan Anne. I wish to hear of any developements your end. Take care.

I have been taking more pain killers for a while now (400mg ibuprofen and 1g paracetemol 2 to 3 times a day. Sometimes change the ibuprofen for aspirin.) I think it has helped keep the headaches at bay for the most part but I am now wandering if the overuse of painkillers could be the cause of symptoms getting worse lately? Then mind boggles when I start think about what caused all this in the first place and what Can be done to releive symptoms or fix this. It doesnt help as we all know.

Hi Jason

I am still taking 10 mgs of nortriptyline, sometimes only every other day.  I was told by the consultant to take it at night to avoid drowsiness.  I would like to come off it completely but some days still dizzy with the diagnosis of silent migraines it has helped me about 80% which means I no longer stumble around like the drunken sailor and enabled me to carry on working as I couldn't get through a door without having to cling on to the walls.  I also found I was so low on vit d recently.  I was so low in mood in the winter and felt so depressed as have always been prone to SAD in winter months but this was the worst as I was groaning just getting out of bed and dragging myself around, with even the bones in my feet aching and very sore eyelids, all itchy and scratchy.  I was also very low on folate.  I have been given high dose supplements from GP and started taking the vit D 40,000 units once weekly already feel better after 2 days.  Hopefully this will continue.  I accept that I may always have good days and not so good with the dizzy's but just hope it won't worsen as I get older and never hopefully as bad as it was when it first started a few years back when I was crawling around on the floor.  I hope you feel better soon Jason but you may be lacking in Vit D or something else going on.  Can you get your bloods checked out for B12, folate and Vit D.  All best wishes.

Hi Anne. Why do you want to come off nortriptyline if it is helping things? Is it the side effects? I was having blood tests done all the time but I have not had one in 6months maybe. The only thing they found is sometimes my thyroid was a little low but they said not low enough to take medication for. I was hoping that the low thyroid was the reson for my fatigue but they said it was not the cause as it was not low enough. I take multivits, magnesium, q10, omega 3. I used to take b12 liquid too to help the fatigue but it didnt help. I shall book an appointment with my gp and get another blood test. I need to check in with them anyway. I am so glad that you have seen improvement and have found some answers. Thanks for your reply Anne. Best wishes.

Hi Jason

the consultant said I should try to come off them and carefully reintroduce the foods that cause the silent migraines.  I know chocolate is one and probably cheese.  The nortriptyline has also helped my longstanding shoulder blade pain and much better than all the NSAID I was taking before like Naproxen which I think was affecting my kidney function which dropped at one point to 59% and has now gone back up since stopping naproxen. 

I would like to be tablet free if possible but if I find the problem returning with my balance and vision and shoulder pain  I will not hesitate to go back on Nortriptyline again as it has had such a positive effect for me.  Sorry to hear it didn't help you but there might be an alternative to which you would be more responsive.  Thankfully a low dose of just 10mg has helped me and I'm hoping I won't build up a tolerance to it and have to increase the dosage.

Yes, make sure to get your bloods done for Vit D as it can cause all sorts of aches, pains and depression.  If you are below 30 in the blood test you will need to go on a much higher dose than is provided in a general vitamin dosage.  I was concerned the day I took the high dose of 40,000 iu but no bad effects to date and the second day after taking it felt less bone pain, but today feel the aches returning, so probably it only remains in the system for a brief period of time.  My next dose is not due until next tuesday. Low folate causes increased tiredness and breathlessness which I was also experiencing.  That has decreased also as have been taking the high dose of 5 mg for the past fortnight.  I am going to try to take better care of myself, especially during the winter months next year, so this doesn't happen again and hopefully avoid it.

I am a bit of a cynic about meds anyway and the initial diagnosis that I had silent migraines, but I was proved wrong and am pleased to say so

Watched a documentary saying The overuse of pain relief can have a rebound effect and can cause headaches/contiued pain.   Viscious cycle but very much a case of moderation in everything it seems.  I was doing well for years on Ibuprofen whenever I had back pain, then following a surgery the gave me Ibuprofen IV and now I can no longer tolerate it.  I use to do well on co-amoxiclave as an antibiotic but now it causes me projectile vomiting and diarrhoea.  Our bodies change over time and we can become intolerant and have adverse reactions to meds that use to help.  Best have a chat with your GP and see if there are other alternatives.  Best Wishes.