I've just come back from seeing my GP about my continuing dizzy, unbalanced feeling. As well, as checking for neck instability, I'm very hypermobile and have EDS. So am off for a neck x Ray. A shame they couldn't have included it in last week's brain MRI lol.
I mentioned to the doctor about whether anxiety could be causing some or all the unbalanced feeling. I have a strong feeling I've got PPPD, possibly triggered by a migraine I had 4 weeks ago. There's a strong link with anxiety, stress and PPPD. As well as migraines.
I've tried Stermil and Betaine tablets, for Meniere's. To no effect. I feel off balance most of the time, even when sitting. Like someone is pushing me. There's no nausea, no hearing problems. I've also got rubbery, jelly legs as well.
SSRI'S are sometimes prescribed for PPPD, but my GP suggested propranolol. At a low dose. I'm very wary as I have asthma and its not good for asthma sufferers and I seen it used for hyperthyroidism and I'm concerned about the effect on my hypothyroidism. I believe it reduces FT3.
I'd appreciate some advice please.
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Sparklingsunshine
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I point out I has asthma although to be fair he did say if I feel wheezy to stop
taking it. I also pointed out I had an underactive thyroid and was on Levo, as I heard propranolol mentioned on here a few times in conjunction with overactive. But he didn't seem concerned. He's put me on 10mg 3 times a day but I'm not keen on starting it.
It's not vitamin related, it's non spinning dizzy off balance. It's not BPPV as my GP tested for this, it's not Menieres, labyrinthitis. It's not POTS. My GP has ordered lots of blood tests including thyroid. I'm still waiting on results of brain MRI taken last week. It almost feels like I'm drunk. I'm never nauseous and its worse when I'm tired.
So in a nutshell lol do you think I should skip the propranolol. I don't fancy it and after reading through your profile I certainly don't want to be stuck on it. I'm alarmed at the issues with asthma and hypothyroidism.
I was resigned to maybe trying an SSRI although I'm not convinced it's anxiety. I don't feel particularly anxious, just fed up with unexplained symptoms. I'm not sure it isn't a physical issue, ie a neck problem. I guess I'd like to rule that out before trying anti anxiety meds.
Personally I would not take propranolol. It was prescribed for me for postural tremors by a neurologist. Worse still he prescribed a slow release form. After a couple of months I became exceedingly ill on it......my blood pressure shot through the roof so high it scared the GP & I shouldve been admitted to hospital. I had to stay off work 6 weeks as it took ages to get it out of my system. All beta blockers have a terrible effect on me. Wouldnt touch them with a barge pole.
Also look at b12d.org. They have a symptom checker. I'm on daily b12 jabs. Three monthly is a long gap. Id argue that you are having neurological symptoms and they should put you on alternate day ones. The spray for neurological symptoms would not be sufficient even if the b12 test says otherwise.
Also consider gluten. If you haven't excluded it yet its worth a try. After years of suffering with postural tremors which gradually worsened I found out the cause is gluten ataxia. Its the balance system in the brain that is affected. To pick it up you would need a specialist mri scan. I know this as I have seen the world leading specialist in Sheffield at one of two nhs Ataxia centres in the UK. He told me its a special mri scan they do yo identify this. Since going gluten free my tremors have improved a lot....not gone because there's probably permenant damage now. You'd have to trial gluten free for 6 months as it takes several months before you would notice any difference - if that is the cause.
Do you self inject? I'm under a neuro as I've been having odd symptoms since October. And I'm awaiting my brain MRI results from last week.
I was going to ask him to contact my GP and ask if I can have more frequent jabs as my previously horrible GP refused saying I didn't need them. Good news is I asked to change GP and the surgery obliged.
Yes I self inject. I do subcut not brave enough to stick needle in muscle!🤣 GP supplies b12 vials. They also get me the needles & syringes from the hospital as you need a needle to draw up & one to inject nurse said. They don't have that type listed on prescription- only the all in one sealed needle/syringe. Id definately get the neuro to write stating you need B12 injections alternate days. How horrid they wouldn't increase.
I've been on daily now for 2 years, alternate days before that one year.
B12 costs them pennies. Self injecting saves them a fortune.
I mentioned to the nurse doing my jabs that it would be better for patients and the NHS if they could teach us how to self inject and supply the required stuff. Plenty of patients have to self inject for various conditions. I'm impressed you got the NHS to agree to it 😄
My GP was super keen as it saves them money & time on their nurses so I didnt have to persuade them! The cost of the nurse is the most expensive bit! I just had an appointment with the nurse and she observed me self injecting & signed it off. Told the GP what I would need. If you explain to the doctor it would save them money on nurses time they probably will bite your hand off! Bizarrely I'd been self injecting for 9 months before they approved it & they knew I was still had to have a nurse observe my techniques as I had self taught myself. All because I had to get approval from neurologist for b12 jabs first before they'd start treatment.....& of course over 6 month wait for an appointment. I wasnt prepared to wait that long as I was struggling to walk at the time.
Seems like a no brainer really doesn't it. I'd much prefer to self inject as and when it suits, rather than having to fit in with a nurse. A waste of their time and mine to be honest. Then the nurses can deal with patients who really need to see a medical professional.
Well I'd approach them about alternate day jabs.....& if they agree you can always say your aware of the nurses time so happy to self inject if nurse would show you to help out.
I don't know about Propanalol, but I felt unbalanced and dizzy on and off for years, it was appalling, my commiserations! After many tests, including MRIs, calorics, tilt table, trimodal evoked potentials etc., I was told nothing was wrong and I should try some physiotherapy. That made it all worse, but I eventually I found a sports massage therapist who also did trigger point therapy and myofascial release, and she worked on my neck and shoulders, then on my sternocleidomastoid muscles, at which point my balance normalised and the dizziness stopped.
This may not be your problem, and it's important to rule out other things first, but if it is, there's quite an easy fix, provided you can find someone who works on the neck and throat areas. There are lots of articles online about SCM trigger points causing problems with balance and dizziness, and also their connection with migraines and other symptoms, which should help you work out if this might be your problem:
curalistic.org/symptoms-and... (He also has a very good Facebook group, his self-help programme is free, but he used to work one-to-one and then publish the results, which isn't necessary)
That's very interesting, I'm wondering if it's neck related, either because I'm hypermobile and it's affecting my neck due to ligament laxity or if something is being compressed in my neck, ie a nerve or a blood vessel. Sometimes my head feels too heavy for my neck and I've definitely had more migraines and headaches. And it feels like pressure at the base of my head.
I've got to go for a scan or xray, not sure which one to check my neck out. I've only had the unbalanced feeling for 4 weeks but it's so debilitating.
But in honesty I've not felt right since early October. It started with prickling, pins and needles on my scalp and elsewhere, I blamed it on Levo as I've a history of drug allergy but its definitely not that. And I' ve had periodic episodes of rubbery legs. The unbalanced feeling is just the latest in a series of weird symptoms. Thanks very much for the info.
I had the same symptoms, referred to ENT & had various tests including MRI. They didn't find a specific cause and said its probably vestibular migraines.
I was prescribed Amitriptylene, starting on a 10mg dose then increasing to find the right dose.
It did help my sleep, anxiety and ultimately my symptoms but having read your post, PPPD sounds a more likely conclusion.
Sorry, that's probably not much help to you bit I hope you get an answer and solution.
I have fibromyalgia and was on Amytriptyline for sleep and nerve pain. It was a horrible drug. I wouldn't use it again if you paid me lol. Good to hear your symptoms resolved. How long did it take if you don't mind me asking?
As I said I have Fibro, hypo, B12 deficiency and menopause and they all nicely overlap. I never know where one stops and the other one starts. A perfect storm of feeling yuck.
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