Was just wondering if anybody else developed 24/7 dizziness after being diagnosed with Glandular Fever?
Hi, I know you posted this a while ago but I have been googling to see if there is a link between glandular fever and MAV symptoms. I had glandular fever around March 2015, (didn’t know it was GF until recently and things started to make sense!!) started as a really bad cough that I couldn’t shift for weeks, didn’t actually feel particularly unwell with it until after it went away and I was left feeling unusually tired all the time. Was an avid gym goer but my fitness levels started to decrease, I would be in my spin class and be absolutely knackered after the first few minutes. I would want to sleep as soon as I got home from work, had no energy at the weekends etc it was very unusual for a fit and healthy 27 year old! 2 months went by and things seemed to get worse when we went on holiday abroad, I don’t know if it was because I was finally relaxing but I was so exhausted I didn’t have the energy to do even simple things like get myself ready in the evenings, I know holidays are about relaxing but this felt strange and on a different level of dopeyness, I just felt really off. Fast forward a few weeks back at home at work one Monday after a nice weekend of a meal an few cocktails out with friends (which I was knackered for an had to come home early) I felt so unwell… Worst headache ever - ohh the pressure, blurred vision, dizziness - corridors were moving as I was walking down them it was like I was on a boat, nausea - had the rest of the week off work as discussed everything with my GP, told him I’d been busy recently as just got engaged and we’d been a bit non stop since coming back off holiday and he agreed I might just be a bit run down and just need some time off, returned to work the next week was ok but the weird tiredness was there and just generally felt off still. The week after on the Monday the same thing happened again Head, dizziness, blurred vision, nausea symptoms came back but this time they never went away… Day, weeks, months passed, because my symptoms were so common for numerous things I kept being diagnosed with different things based on guesses ‘it could be this, it could be that’ well yeah I COULD guess that myself!!! GP’s, ENT, acupuncture, chiropractors, Endocrinologist, and finally a neurologist after 7 months diagnosed me with chronic migraine and vestibular migraine! Because I was left untreated so long my headache pain gradually became worse, topiramate and propranolol have now broke my pain cycle which is great but I am still left with the dizzy/off balance feeling and horrendous nausea on a daily basis. After 4 attempts going back into work I realised the lights and computers made me feel a lot worse and I couldn’t physically do my job, I couldn’t even look down to write on a piece of paper it was so bad, so I stayed off sick for several months until I eventually decided it’s best for my health to hand my notice in and change careers to a migraine friendly environment once I’m better. My life has drastically changed because of all this, I used to be a social butterfly and the main person in my group of friends who always made the plans for nights out and get togethers, we’ve cancelled our wedding until I’m better, and I’ve had to leave the job I was comfortable in for the last 8 years. I only found out about glandular fever thanks to seeing the endocrinologist who did intensive bloods, but my GP said well we can’t say WHEN you had it, but I didn’t need him to tell me that it’s pretty obvious to me as nothing else explained the exhaustion I had last year, some doctors are just so frustrating! I just think there’s a link to this and what I’ve got now, I’m seeing a private physio (she’s amazing) for my neck as that’s one of my symptoms and she said my glands are still really swollen like I’m fighting an infection off still, I’ve only recently started to get a bit of my energy levels back slightly but just doing a bit of housework tires me out now. I’ve read it can take some people a very long time to recover from glandular fever, and my physio said that if our glands are swollen and causing issues with the neck or ear areas it could be pushing on something to make us feel dizzy and sick all the time as it’s all connected or something along those lines.
Hi, I realise this is an old post. My daughter 12 had the exact same journey. She has headaches/vertigo 24/7. I would love to know if you have found any relief since then? We are desperate for her to ger her health/life back. She is on Propanalol and Cerp. How long did it take for the Propanalol to start working?
So sorry to hear about your daughter. Welcome to this site. May I suggest you check out the Welcome and wiki section which contains lots of information about MAV generally and will give you a good grounding in what you are dealing with. I may be proved wrong but It’s unlikely you will receive a reply to such an old post so hope you aren’t relying on it too much. As a migraine preventative Propranolol can take 6-8 weeks to start working and longer for real ongoing improvement. I state this solely from my personal experience. You may well see some improvement during that period. Propranolol is a well documented established migraine preventive over many years. It’s usual, with adults, to persevere for 4 months providing there are no intolerable side effects, before changing to another drug should improvements have not been seen within that period. Unfortunately generally there’s no quick fix for MAV but Propranolol is a good choice so you are hopefully on the right road. Hope this helps a little.
Thank you, will have a look at wiki and welcome sections. The doctors keep on telling me they are counting on the meds but we arent seeing any change, at least there is hope. Thanks
Hi. Sorry if the news I gave you wasn’t what you were really wanting to hear. I thought afterwards some plp do get great relief from small dose of Propranolol quite quickly, and others have to take higher doses but still control it or at least see it coming under control within the 6-8 weeks. Response times may vary depending on how ill the patient was to start and Glandular Fever very debilitating. My husband had it in his mid to late twenties when he was so strong and otherwise vigorous, althetic and healthy, and it really knocked him about. In itself it can last months. MAV does often start up after some trauma (her illness maybe). although it can of course be very closely linked to hormones too.
There’s certainly hope. More than hope. Propranolol has certainly ‘saved’ me from MAV. However it did take me longer again. I think it really took ages to get going but I was so ill at the time I couldn’t really care, just kept swallowing the pills. The better news I’ve found personally is that it’s gone on bringing very slight improvements for me even 18 months down the line as I am now. Bit different with a youngster however. Do keep in close touch with your specialist throughout. You do really want her to recover as soon as possible but best be prepared for a bit of a wait. That has been my personal experience so far.
What is ‘‘Cerp’, I expect you might mean ‘Serc’. You can use the Search’ on here to find bit abt that. It can be taken with Propranolol. I’ve not had it. I think you may find the jury is still out on whether it’s effective with MAV. Headache is one of its side effects for some plp.
Haha… yes, Serc, sorry! Your answer was perfect because it is realistic. This journey is full of promises and disappointments so Id rather hear the truth of what to expect.
She is on 20mg Propanalol twice a day, not sure if thats high or low. Can only wait, I guess. Just grateful I found this forum, will do some research
Glad it was some assistance. Trouble is some doctors only have theoretical experience. I’m no medic. I just write from my own personal experience. I always think it’s better to how some idea how things might progress. With this there’s no point expecting a sudden miraculous recovery but at least you shouldn’t be disappointed when another day passes without obvious improvement. Improvement tends to be slow, slight and gradual. Cannot really comment on the dose, not for a child as I’ve no idea. Adults are different. However have seen formulas relating to propranolol dosage and bodyweight so there’s obviously there’s a link and I have heard of adults only taking 20, 40 or 80mg daily successfully.
An interesting thread. I had glandular fever as a young teenager (14) and I have wondered myself if there is a link at all. I haven’t had a recurrence of GF but when this all started in April this year my neck glands were definitely up!
Ditto…i had glandular fever when i was 24 just after the birth of my son…interestng
Definitely! Maybe more than coincidence? Jan X