What are peopleās thoughts on using vestibular suppressants long-term?
Was anyone here offered a vestibular suppressant early on in their illness? I know I certainly wasnāt.
Iāve reached the stage now where I feel tempted to ask for an anti-histamine or benzo to take daily to stop the dizziness / rocking, having spent over a year trying 5 migraine-preventatives with no success.
Here is a link to the list of suppressants Iām thinking I may ask my GP to try me on. Drug treatment of Vertigo
Iām just fed up with the constant rocking and starting to doubt that this is migraine at all!
Would be interested to hear peopleās thoughts.
Yeah, Iāve been rocking for almost 2 years. Itās a bummer, but its almost gone for me. Do you get regularly motion sick from it? I think thatās when it makes the most sense to take a vestibular suppressent. For example when people get the violent spins early on. Iāve read that its harder to recover from dizziness while on a suppressant because your brain doesnāt get to learn how to deal with it. But I get it, its awful to carry on with rocking.
Yeah Iām almost 3 years in and its driving me nuts. Iām completely disabled by the rocking and I get motion sick whenever I try and get out and do anything - I had to drop out of university because of it.
Interestingly, in terms of impairing compensation, it seems that the much bally-hooed Dr. Hain is very sceptical that Benzo use weakens the brainās ability to adapt. In this article: https://www.dizziness-and-balance.com/treatment/drug/benzodiazepines%20in%20vertigo.html, second last paragraph, he lists some studies which seem to contradict what he calls the ādogmaā that the brainās ability to adapt is impaired by taking vestibular suppressants; itās very interesting stuff.
Ah, I guess I was thinking more along the lines of Meclizine. Yeah, Iāve heard of some vestibular migraine patients taking benzos like klonopin long term.
I rarely got motion sick, mostly it would just give me bad head pressure headaches. It is so distracting to try and think or work or manage any amount of stress. Itās like hard wired to my anxiety center, so any amount of stress just seems almost unbearable.
I think if anything helps you get out and do things you should go for it, especially after 3 years of suffering.
Amitriptyline is a vestibular suppressant and Iāve still improved hugely. No more rocking.
I think getting better is partly about compensation but I think the migraines are a symptom of this process not working as things are too unstable. So the action of vestibular suppressants might be over played.
I would go by clinical evidence of outcome as your best guide avoiding the flawed studies.
Be careful not to get hooked on addictive medicines though.
Iāve just been so debilitated by dizziness, headaches and anxiety for so long that Iām finally keen to start trying those meds which are ālast resortsā due to their potential for addictiveness, etc.
Have you tried pizotifen? Itās an anti-histamine but designed specifically for migraine. My GP was very happy to give me cinnarazine (Stugeron). When I was under ENT for misdiagnosed Menieres the consultant said if you feel dizzy and have no meds then go and buy Stugeron . It does make me sleepy though.
Iām about to start taking pizotifen -so fear Iāll be asleep for most of the next few weeks. I think you just have to accept and get on with taking meds - any meds (even meclizine). Dr S prescribed me pregablin but Iām too scaredy cat to take them so heās given me pizotifen and that is what he said - try the med yourāe comfortable with. If you have side effects that freak you - come off it - there are other meds and you need to find the one or the combo that work for you. Thereās no āgold standardā or drug that will work for everyone. Weāre awkward customers.
No I havenāt tried it yet but itās very high on my list for migraine preventatives still left to try.
Iāve tried 5 migraine preventatives so far with no luck (amitriptyline, propranolol, topamax, flunarizine, and Gabapentin). Flunarizine is a sister medication to cinnarizine, and was the only one to have any effect (though only slight) on my dizziness. However I am currently in the process of withdrawing from flunarizine due to drowsiness.
Best of luck with pizotifen, it seems a very effective drug without too many side effects!
I am taking Pizotifen - it has helped a lot as it got rid of the dizziness and I am less unbalanced than I was. In July Dr. S advised me to increase my dose from 3 to 4 if I stopped improving after 4-6 weeks and because the head and ear pressure and tinnitus hasnāt improved much over the last 2 weeks I have started to take the extra dose. I have to say it hasnāt helped much yet as my ears in particular are worse than normal - pressure and loud tinnitus - but it has only been 3 days since I increased the dose. I am so impatient! I have also been overdoing it at home and have started back at work so maybe I need to stop rushing around.
Dr S also said I could go up to 5 a day if there was no improvement in another 8 weeks time, so perhaps thatās how long it will take for the 4 pills a day regime to kick in. Who knows!
Hi Jan
How have you been managing at work? Ive been on phased return but back to my 30hrs a week from tomorow. Im still getting taxis thoā¦cant go back to the 2hr 20 mins bus journeys. Ive had 10 days head and neck pain free from the Botox i had on August 3rd its starting to just kick inā¦dizziness and balance and ears still an issuse but im having half decent days
Jo x
Glad that you are having some decent days - long may that continue. I am also on a phased return - I did one day last week and will do two days this week then 3 days next week. I was exhausted after my one day last week and am feeling pretty done in having worked today! My ears seem to be playing up since last Thursday - not sure why - so I have increased my Pizotifen but they are getting worse instead of better. Such is life or this new MVBD life anyway! I am driving and the journey can be stressful - I think stress is a definite trigger - so I completely understand how hard your journey is on the bus - stick to the taxi. If work doesnāt āwork outā I shall investigate early retirement on health grounds. Maybe I am giving myself a hard time as I have only done two days so far and it is always busy at the beginning of the new academic year. We shall see!
Well i had an OH assessment last week and the report sent to my employer read i will continue be " high risk" wth regards to future sick leave so they know where they stand!! He also wrote my chronic illness fluctuates not only daily but hourlyā¦hes so spot on with that one!!! If they offered me early retirement on health grounds i will gladly accept. Jan, my ears always give me problems as does my sinus pressureā¦every single day.
Your doing greatā¦working on large dose Pizotifenā¦i admire you
Jo x
Not at all familiar with Pizotifen (in fact had trouble spelling it) but, if itās not affecting the ears, itās probably just they are playing up because that first day back to work was an extra strain on yr balance system. Thatās what Iāve found personally. Last few weeks my ears have felt just like āordinaryā ears, no fullness and first time in years no constant tinnitus. Just breakthrough tinnitus when I seem to have challenged the balance system more than it appreciates. One way last week I felt really good, virtually 100% so we did a slightly longer walk part of which was over rougher than usual terrain. Came home, felt Iād taken another big step forwards, felt fine, cooked a full roast and baked two large loves (perfectly normal regular activity for me - the cooking). Then when to bed planning the next dayās walk only to wake up with full ears and tinnitus and feeling rough and needless to say didnāt go for a walk at all next day. Helen
It is definitely a struggle ! I am finding it hard to concentrate so am making myself have lots of breaks - work has been very supportive and have arranged for one of my part-time colleagues from another campus to support me - bless em. I must admit I am really considering early retirement on health grounds but will give it until Christmas before deciding, unless I just canāt hack it. The occupational health doctor said I could go back and see him if I had any problems - I think thatās who I need to see for an early retirement assessment if it is on health grounds. I have done my two days at work for this week - next week up to my normal 3 days. I need to do sweet fa tomorrow I think!
Sounds like me Helen. I think that is why my ears and head have been worse this week because I have over done it for the last 2 weekends. Looking after my granddaughters was great but they stretched me to my limits mentally and physically and then I invited my family over for Sunday lunch this last weekend and the dinner, which I had help with from my husband, and clearing up, which I didnāt have help with, tipped me over the edge. Unfortunately I had work on Monday and I felt like I was going backwards. It has been a better day today, but my ears and head are just going off now! Good job I can rest for the rest of the week if I have to!
Um, yes. Hereās where the need to pace oneself comes in. Obviously you find that just about as easy as I do. Itās not something Iāve ever had to do, guess you are the same and itās Frustrating with a capital āFā. It really grates with me. Every time. Still Iām improving. Oh, not with the pacing just with the MAV symptoms lessening I can do bit more without having to think āpacingā. Sunday I was all morning playing, mainly Bubbles, with 2 year old niece and survived with nothing more than a stiff neck and half a headache next day. There was a time bubbles moving through the airā¦ oh, best not go there, but Sunday it was fine. I think MAV needs alot of recovery time. I know because of ignorance mine is going to be particularly protracted but still I think itās a case of years rather than months for most. Constantly invoking triggers hinders rather than helps until itās stabilised. Helen
Jan
My OH doctor is contacting me in 12 weeks to see how im doingā¦i thimk he is monitoring my ability to work my 30 hrs a week. He wants scans doing on my neckā¦im waiting to hear back about this.
Ive take zolmitriptan this evening for terrible ear pain and pressure and it actully worked!
Jo x
Hi Jo - good that the OH is following up. I think the trouble for me was that I felt about 95% better when I saw the OH and couldnāt anticipate many problems. Now that I am actually back at work there are lots! I shall give it a month and see how I am getting on - if it is not so good Iāll request another session with the OH. So glad that the zolmitriptan worked for you - hopefully the pizotifen increased dose will kick in soon. Funnily enough my ears were better yesterday after I had some paracetamol for a throbbing headache. Hmm, maybe I should take some more. Jan x
I am beginning to realise that there is no quick fix for this - I shall have to pace myself a bit better. Trouble is I am like a bull in a china shop when I feel good and then undo everything. Also paranoid about putting on weight so am pushing myself to keep moving! How vain is that!! Jan x
I am also on a phased return - I did one day last week and will do two days this week then 3 days next week. I was exhausted after my one day last week and am feeling pretty done in having worked today! My ears seem to be playing up since last Thursday - not sure why - so I have increased my Pizotifen but they are getting worse instead of better. Such is life or this new MVBD life anyway! I am driving and the journey can be stressful - I think stress is a definite trigger - so I completely understand how hard your journey is on the bus - stick to the taxi. If work doesnāt āwork outā I shall investigate early retirement on health grounds. Maybe I am giving myself a hard time as I have only done two days so far and it is always busy at the beginning of the new academic year. We shall see!