I got better once! Will I again?

Im really getting worried now as Ive had bad patches before but none this long and everyday the dizziness seems the same level as the day before BAD!
I just wonder if I am truly stuck like this now its scaring me I recovered before and at least had good days in bad patches but now it seems Im completely stuck like this for good!

Did you ask the doc about upping the Ami?? What about adding something to it, like a beta blocker?? I am taking Propranolol, it is really easy for me to tolerate.

I have been where you are, I am so sorry. Please try to enjoy that baby and get lots and lots of help with your kids!!

YES Donna! Definitely you will. I felt horrendous for the first 12 months and improvement for me was barely noticeable. After 3 years I was fairly improved but still not normal and then this relapse took me right back to the beginning and it feels like it goes on forever. For the unlucky ones like me it isn’t like having a bad patch for a few weeks then quickly getting back to baseline, it’s like my vestibular system is totally scrambled by the migraine attack (or whatever happens) and it takes months and years for it to improve. We are all different but what I am trying to say is even if you don’t improve as quickly as you did before it doesn’t mean you won’t improve at all. It can take longer sometimes, you may stay really bad for a while but gradually it will change even if you don’t notice it happening xx

Jem its the inbalance its so bad and everyday is the same with it and its not going i feel like I cant walk properly I reall do believe Im stuck with this now and if I am stuck with that symptom I do see my self houseboud for the rest of my life.

Im terrified everyday a little bit of hope I had is gone I dont know how to make this go away Im trying everything :frowning:

You won’t be stuck like it. If it was a permanent change then your brain will adapt and compensate and if it’s a temporary change then it will improve even if it takes a while. Like I said, I was really bad for ages and ages and honestly thought it was that for life but eventually I noticed improvements. I felt the same with this relapse but just got to hold on to hope especially if you improved before. You have reported some better days on here even though it has been a bad relapse so I am certain it will improve xx

hi Blondie

You wont be stuck like this. You will get better!!

are you on a MAV diet?
Have you made your lifestyle changes?

I think you might need to see a DR who specialising in this.

Remember nobody is stuck like this forever. Try and keep positive the stress and anxiety feeds this thing and makes you worse!!

You will get there

x

Thankyou guys so much your posts keep me going everyday. I need to see someone I know that I just dont know how to sort it at the moment my husbands Job is as when the work is there he is self employed and its dried up he has no wages this month so I cant even afford private at the moment.
I may ask my Dad to loan me the money I cant live like this I know that X

Blondie,

How about trying to call the DR Silver and DR S secretary and asking if you can see them on NHS? explain the situation
Or you can try seeing another Doctor and demand that you want to see DR Silver or Dr S

My doctors are just so awful my old doctors used to let me see anyone trying to get anything out of this new doctor is like getting blood out of a stone.
Jem said DR S takes a while to send an invoice if you see him so could try that route privately its getting someone to take me there. Who do you see Robert?

i used to have a doc like that.

why dont you see a different doctor?

i see dr surenthiran

Donna, if you haven’t seen a neuro on the NHS recently and you want to see Dr Surenthiran on the NHS, one idea which I know has worked for someone to get to see their choice of consultant, is to email him/his secretary with a summary of your symptoms and saying your really want to see him but are having trouble getting your GP to agree a referral and you can’t afford private so would he see you on the NHS. They should reply telling you they can help and saying they are expecting your GP referral to come through. That way when you show your GP the email they will feel obliged to send you knowing that Dr S is expecting you. It’s worth a shot maybe? x

Good idea. I word it in a way of saying ‘‘Dr Sureinthran has agreed to see me but he is waiting for a referral letter from you’’ or say ‘’ ‘‘Dr Sureinthran want to see me but he is waiting for a referral letter from you’’

Hi Donna
Please don’t panic. I think it will take a while for your brain to bounce back. The only advise I can give is to try and get lots of sleep (probably not possible with a newborn and 2 young children). Try and get your doctor to sort out a referral on the NHS for Dr S but in the meantime try and get up to 30mg on the ami. I know you probably know all this already but try and move around as much as you can when having a slightly better day and then rest rest rest. The brain does need some stimulation to reset itself and time. You might not notice any of the improvements cos they will be really small and will only start to accelerate once you have reached a point where you are able to get out and about.
As for me, I have had 2 spinning attacks in the night over the last 2 months and they were both when I was ovulating. This condition is so closely linked to hormones no wonder you feel so bad. The drugs don’t stop these attacks but I recover within a couple of days and am pretty sure it is cos of the meds.
Thinking of you XX

Hi
It can totally be that your medicine has “pooped out”. The same thing happened to me with Remeron. I got better rather quickly, and then over a few months it stopped working and I went into panick mode that I would never get better etc…
I don’t know what dose of Ami you are on, but the first thingI would try is to up the dose and see if that helps. You can always switch to another tricyclic, like Nortriptyline, and you can go straight to the same dose without having to taper etc…
You can speak to a pharmacist for free and ask them some questions, and you can probably speak to a nurse at your doctors office to ask about increasing the dose, and explain that you don’t have the insurance/funding to come in at this time.
Also, check in with yourself and ask some questions: Have I been sleeping well? Am I excersizing? Do I have more stress going on? Hows my diet? If you haven’t been keeping a fairly stable migraine lifestyle, you will want to tighten that up as well.
You will get better…just a blip in the road.
:slight_smile:
Kelley

Thanks everyone just knowing your there helps me through this I can do things at home with difficulty my hubbys gone out tonight and Ive cooked an bathed the kids etc but its so hard! Im moving loads its just the awful inbalance the vertigo spins have stopped now.
I am going to up the ami to 30mg tonight Ive got nothing to lose now and Im going to see if my Dad would drive me to Dr S or my Father in law.
Can anyone tell me where in London his clinic is please its closer to me X

hi - if you are going to see Dr Suren…he does fridays (pm i think) in Blackheath in london, plus somewhere in central london., plus kent.
Slly question probably but are you on the MAV diet already?
regards

Private or nhs?

Hi blonde,

My post seems similar to you, I don’t have the bad spinning attacks, prb twice a month but I have permanent imbalance, I can’t stand still without rocking or needing to hold in the side, I can stand for 10secs but if I move my head or look down it makes me feel sick amd brings on the vertigo, can’t remember when I went out for a meal and enjoyed it. Have you gone to balance retaining? Xxx

OMG my doctors are such a ******* joke! Ive just been there and he wont let me try pitzotifen AT ALL and no explanation as to why it wont hurt them to give me the prescription and let me decided about my own health! I asked for a refferal to Dr S gave him all the info but NO they want me to see the local neuro first.
I thought I would throw him a loop and asked for Valium beens as everything else is off the menu he didnt know what to do at that point and BROUGHT in another doctor for a second opinion I basically told him he was a big P**** who cant do his job properly!
I think Im going to join on with someone else now today because im banging my head up a brick wall with these people

Blondie,

There’s a new rule in the NHS which means you are allowed by law, to choose which hospital you want to be referred to. Hit your GP with this. Tell him you want to be referred to the NHS DR S practises at. (Whatever that is, I don’t know.) This is your right.

nhs.uk/choiceintheNHS/Yourch … pital.aspx

Alternatively, can you find the money to pay for a private consultation with Dr S. After that, you can ask the NHS to put you on his NHS list. Muppo did that I think.

x