Sometimes I’m bizarrely grateful that I’ve always been sick. I don’t really know what normal is. That means I don’t really have sour grapes about long term illness. I’m just happy when I find something that makes me feel better. I don’t expect to heal. I don’t expect to achieve whatever normal is. I just do my best and am grateful for the days that are really good, knowing that there may be just a few or sometimes, a lot of them close together. I’m most grateful for finding a community that understands me. At least I’m not crazy. Or I may in fact be crazy (how do you know, after all), but I’m not making MAV up. That’s something I never had before, validation.
Feeling detached is never good.
Recovery and how close? I’d say I was a lot better earlier this year before my antibiotic mess in Mar 2018. I feel it’s a slow slow slow gradual progress, but being able to shower more than 5 mins most days is a plus. I just notice the weather messing with me more lately. I can withstand certain triggers for a lot longer tho. I feel I was in a better place back in Jan-Feb of this year as opposed to now. I can’t put my finger on a recovery % and if I could, I’d still say I’d like to be able to eat everything and have any medicine without issue as part of the percentage, but that probably won’t be the case.
I’m with you @Space_Cadet it’s such a slow process! Like you I felt a bit better back in July but then it got worse again! I do agree that stress is a big trigger as I didn’t have a clue what this was and I was a nervous wreck. We will get there slowly but surely
i take a lot of my daily strength from what you say, that I have very good days and that I have a community that supports me and I can come to when I am not feeling great.
I know what you mean although I don’t think a calcium Chanel blocker would cause that sensation
Topomax did that to me in spades. So much it changed my personality.
I am so sorry that you are suffering with this too.
I can relate to all of your symptoms - I have had them daily for 2 years in particular the ear and head pressure fishbowl symptoms u describe - like looking at the world from behind 10 panes of glass. Your recent flu like illness set the alarm bells ringing for me - after 2yrs of hell with a migraine diagnosis and a bevy of meds that did nothing I have discovered that I have a sinus issue (despite not having any congestion or mucus) that will require surgery and its also affecting my ears because sinus and ears are connected - this issue may be the trigger for the VM but only sinus surgery can tell for sure for me. I recently discovered that Sudafed and saline nasal spray was giving me huge relief of the ear and head pressure and the dreamlike state you describe - within 45 mins of taking a tablet or a few mins after repeated nasal sprays followed by blowing my nose my ears would pop and the head pressure/disconnected from the world feeling would dramatically reduce. My neuro dismissed this as coincidental as migraine can cause ear fullness popping, he also said Sudafed is a vasoconstrictor and so it was possible that the Sudafed was decreasing my migraine by constricting blood vessels in my brain. Like you I couldn’t stick it anymore and was fed up of 2yrs with this so I recently begged my GP to do sinus ct scan which uncovered the sinus issue. Referred to ENT, scoped my nose and ear pressure test - while ear pressure test was normal ENT agreed based on symptoms and response to Sudafed & saline nasal spray that there is intermittent Eustachian tube dysfunction in addition to the sinus issue. She told me to avoid Sudafed as long term use damages the vascular system however she told me to use Neilmed Sinus Rinse (the squeezy bottle, not the teapot style) between now and my surgery on Jan 24. I used this for the first time today and I just cannot put into words the relief from it - I blew my nose after it and the difference in my ears is dramatic -they completely popped and I feel “connected” to the world again. You have been to an ENT so perhaps this has all been ruled out for you? One valuable thing I have learnt is that a nasal endoscopy can only see so much, a sinus ct scan is the gold standard in ruling out sinus disease. I guess you could always try a saline nasal spray for a few days as an experiment to see if it helps your ears and if it does I would explore further with your ENT
Thank you for your message. Wow that’s amazing that you have found relief and cause of these unbearable symptoms! I will definitely try anything to get this surreal, dreamlike feeling to go and for my head to feel clear again!! I will buy a natural saline spray today and give it a go!
Agree entirely. I wouldn’t really imagine a betablocker would cause dream’like sensations either. I can understand antidepressants and anticonvulsants might. I’d think it’s more likely to come from the MAV although it’s way outside my personal experience either way. Helen
I’m sure you’ll remember me telling you about my friend who gets vertigo and uses Sudafed alot. Far too much for her own safety I think but … ‘MAV’ obviously is a blanket cover for a variety of conditions with many overlapping symptoms. I wonder how much they overlap and whether establishing that could aid diagnosis, I’m sure, sure as I can be I don’t have sinus problems. I’ve tried nasal sprays to no avail. Very mild hayfever will aggravate my MAV symptoms. The only difference between my friend and I in symptoms is she has never, yet, had an acute attack of what I would call ‘migraine’ symptoms that kept her in bed except the one attack diagnosed as labs That started this whole thing for her unlike me who have had dozens. Can I ask if you have ever experienced a severe, almost Basiliar type migraine attack, with light, sound sensitivity etc. I often wonder, something else that can cloud the issue, where do people who just happen to have had migraine and migraine history, and then maybe have sinus issues too end up misdiagnosed with MAV i suppose. I wouldn’t imagine sinus suffererswould have experienced these full-on attacks particularly with light sensitivity. Light sensitivity being strong ‘migraine’ indicator. So hard to unpick it all. Helen
I have no migrane history although I would get car sick as a kid and have always had reynaurds which was listed somewhere as a factor. Yes my main head pressure is the back of the head in the middle and yes I can get light sensitivity although it’s not unbearable. When I was pregnant my nose would bleed and I would have an excruciating burning pain in my nose. The ent asked me if I had ever broken my nose lol but not that I’m aware of!
I don’t have a prior migraine or headache history either - woke up one day insanely dizzy, the head pressure and dizzy eyes started a few days later and continued. Thru all this I have not had a pulsing or throbbing headache just head pressure all over the head and facial pain deep behind my nose along with the ear pressure and disconnected feeling - like I had a severe head cold but without the congestion and with the addition of dizziness.
You mentioned that you have Reynauds - is that related to a thyroid dysfunction? I ask because pregnancy can mess with your thyroid too so I wondered if your Reynauds is somehow connected to what’s going on…
Also pregnancy seriously messes with estrogen and progesterone levels - could this be hormone related migraine - perhaps your OB/GYN could shed some light for you. I have read that some women have successfully treated hormone related migraine with the use of the combined contraceptive pill. At one point in my journey I consulted a GP who has a special interest in women’s health and she told me that had I been under 40 she would have recommended a trial of the combined pill for me to see if it would alleviate my symptoms.
I truly hope that your current meds do the trick for you as it’s an awful thing to endure on a daily basis.
And @Mav. Er, have I missed something or did you both say you’d been diagnosed with vestibular migraine but have no migraine history. Presumably you have had acute bouts of Recurrent Vertigo. But nothing like migraine attacks, even without the headache but with maybe light, sound, smell sensitivities, aura, vomiting etc. If not that would make Vestibular Migraine diagnosis seem odd to me. Did medics take full medical histories for reference. Sorry so many questions but it just would seem odd. Helen
Yes you are correct I was diagnosed with chronic vestibular migraine with no prior migraine or vertigo history. I did have a tension headache for approx 3 weeks the year prior but I was fairly certain that it was due to stress and tiredness (- was working crazy hours on a project at the time and my Mam had recently suffered a brain bleed). This however was taken as a “previous history” coupled with the fact that my brother suffers episodic migraine that meant I had “family history too”. My neuro summed it up like this - prior headache history, family history, female, age 47 and therefore perimenopause as the likely trigger. I Subsequently had hormones checked with 2 different gynecologists and an endocrinologist who disagreed with the perimenopause bit but neuro still insists it’s a huge piece of this. At the time and subsequently I told him that it felt like sinus without congestion - he told me that my sinuses were clear on the brain MRI. Because of that I did not pursue the sinus as a possibility until recently. My ENT surgeon has since told me that only forehead sinus are visible on brain mri - my sinus issue are in the OM complex (middle of nose) and maxillary sinus (cheeks) - not visible on a BRAIN MRI.
The only way for me to know if the sinus is at the root of this is to have surgery.
Natty - on the saline nasal spray you will prob have to use it 5/6 times per day for a number of days before u can determine if it’s going to help, remember to keep blowing your nose and yawning to help the Eustachian tube to open. The saline spray is pretty tame in comparison to the Neilmed Sinus Rinse so it’s a good place to start.
Thanks I have bought it so will give it a go! I tried Sudafed but didn’t make any difference I can feel that the drunk like woozy/ dizziness is coming from the back of my head where the pressure is! My ears have been blocked for 6 mths since the virus so hopefully saline spray will help! I’ve forgot what it feels like to have clear ears x
I have definitely got sensitivity to smell! I swear I can smell things and no one else can. I get visual snow where it looks like it’s raining! I’ve had where things look like their vibrating/ floor breathing etc! If I say go on a long walk or in shopping centre the pressure increases in the back of my head and I get even more spaced out! I have had where I look at a door frame and it’s wavy/zig zagging! Pulsing eyes and blood rush feeling in back of head followed by a pulsing sensation! If it’s not mav then god knows
I also get the flu like shivers and bright red flushed cheeks at the same time but then I’m not I’ll! I feel as thou I am aware of the blood flow in my brain, I can feel it! If I could just clear my head and ears I feel like I would be a lot less spaced out
Well thanks. Very informative. I always think it’s a pity one cannot get all involved specialist together in one room at same time to sort these things. Might really get somewhere then. Too much specialisms cloud the issue. Do you think old fashioned ‘steaming’ might help @Natty04. My friend uses that too.
Well I suppose that’s better than being told it can only be discovered on post mortem! All the best with the surgery. Helen