I know weāve compared our similarities before. Seems we could have just been non identical twins MAV-wise. I think I can see where your thoughts are heading with this post. I think so. Must admit I usually just go to ground once they start talking āexerciseā, ācardioā and ājoggingā. I know itās been discussed before, MAV really must be an umbrella term that actually covers the symptoms of quite a wide collection of conditions. There can be no other explanation for the vast variation in severity of symptoms. Iāve read various possible explanations the most plausible of which is those that can continue with strenuous exercise (cardio, jogging) are most likely to have a condition caused by a peripheral issue rather than a central one.
Personally Iām with you all the way. This condition has chronically affected your vestibular system. Mine too. For a long time now Iām just grateful that I can walk albeit still with the aid of a stick. On the days I find I can walk totally normally and without effort Iām over the moon. And the joggers jog by.
On totally different track, off topic here. Perhaps you could update your PD with it. Seeing your reference to steroids I was reading Dr Nicholas Silvers comments that steroid nasal sprays can actually cause MAV and wondered? Might the same apply? Iāve no idea but might be worth investigating.
Walking seems to be about the only exercise I can tolerate - when I am able. This past year I have been so sick with VM and classic migraine that I have gotten out of the ability and habit of walking 2 miles/day. But, even when I do walk, when I stop or slow down, VM stuff kicks in like, it looks and feels like I am on one of those people movers at the airport. I have to grab hold of my car or get in the car and sit down to make it stop. I will likely feel woozy to one degree or another for the rest of the day, but it is tolerable compared to how I feel if I try other forms of exercise.
So, I took oral steroid replacement for the adrenal insufficiency. The only time I ever took nasal steroids throughout this trip with VM was very rarely, and those were for seasonal allergies.
I do not think my steroid replacement caused any VM stuff. I say that because I started with VM in February 2008 following a surgery for an ovarian cyst. I was not diagnosed with adrenal insufficiency and started on oral steroid therapy until August 2009. In that in between time, my VM symptoms worsened, and I was seen by neurology and ENT. So, I think I can safely say my VM was free and clear of any interference or cause by steroids. It is curious to wonder though how, if at all, after starting steroids, they affected m VM. Being that I had the worst VM attack after I stopped steroids, I have to wonder if they were kinda keeping it contained that whole time? I do not know.
Its good when one can recall the exact timing so one knows. Itās always so frustrating trying and failing to work it out isnāt it. Looks like there might well be a link there somewhere. Like all the other types of medications it seems some people find steroids help VM others that it just worsens it. Wonder if anyone will ever solve the puzzle.
I only came upon the prohibition of nasal steroids by Dr Silver having tried Beconase for Hay fever last week. It certainly clears my stuffy nose but boy did it make me feel queer. Dr Silver rejects their use for the same reason he rejects the use of caffeine and painkillers, that they can each stop preventatives from working,
That sounds just about right to me. I did Tai Chi for about four years up until mine turned chronic. From memory during the period I was experiencing breakthrough āunexplainedā symptoms such as the feeling I was still walking or driving long after the legs or the car wheels had ceased to move. My then GP told me that thereās meant there was something wrong with my balance and āthereās nothing we can do about that!ā. Iād read Tai Chi might be helpful sometime before that and signed up to class. I had to stop attending once I started VRT because that made me so unwell although I donāt think I could have kept on with it much longer anyway once the dizziness went to 24/7. Iāve continued to dabble with Tai Chi alone at home when I am able and I walk likewise. Walking has been universally recommended Iāve found. Iām medicated and have found as Iāve improved Iām now able to walk much faster than I did originally and Iāve long ago lost the queer feeling when I stop. You might like to try some Tai Chi at some stage. Itās much more like walking than the alternatives. You never have to lie on the floor or twist yourself into strange shapes like a pipe cleaner.
I asked because diet is a large part. You mentioned low cortisol, which fits to my assumption but didnāt write anything about diabetes or anything diet related. Ovarian cysts can develop with hormonal changes / high blood sugar. People with MAV seem to have deranged metabolisms and if you are still suffering Iād suggest cutting out all sugar completely and reduce meal size and frequency and see where you are in a few weeks.
When you said āit is what it isā, you may be miss understanding me. Iām not saying MAV is something else, Iām asking what is it and how can the problem be fixedā¦ if it can. Iāve heard sweet FA from doctors, even if they call themselves specialists.
The likelihood that everyone on this forum has the same issue is slim but there are common themes and they canāt be ignored.
My experience Andy, is that patients know more than the doctors. I cannot tell you how many times I have had to tell a doctor that I couldnāt care less what his precious little textbook in medical school said. I have a background in nursing and know my way around the medical field and various sub-specialties.
I am neither diabetic nor pre-diabetic. I am lucky to not have a sweet tooth, so honestly, the only sugar I have is in 10 oz of my homemade sweet tea that I drink daily. I do not put as much sugar in my sweet tea and most Southerners do. I only drink the one glass, and it is really there to break up the monotony of drinking 60+ oz water/daily, and because well, I am a Southern girl. Sweet tea makes our world go 'round!
I am rarely hungryā¦I am going to be going on a John Hopkins diet that is going to make me eat 6 small meals daily and Iām over going, āI barely eat twice a day and now I have to heat SIX TIMES A DAY?!ā
Iām not severely overweight, Iām just trying to lose the weight I gained when menopause started as I believe it has had a negative impact on my health, inflammation, and Iām vain. My menopause has changed a lot of things including how I respond to certain illnesses, foods, & etc so I am using this diet to help set me on a productive path to restore as much of my health as possible. I realize I will never be 25 again. I started with reversing my adrenal insufficiency, and being able to keep my Hashimotoās under control with medication. At this point I am just covering all my bases using medical intervention when the doctors make sense, my own common sense, and the support and input from others who have similar issues and have found what works for them.
Yes, I do not have a massive hunger pain. If I do get one where I am ravenous, it is always followed by migraine with aura. As of right now, I am lucky if I eat 1,000/day because I am simply not hungry.
I looked up histamine intolerance - I assume that is what you are on about - and it seems very vague and general to me. Are you suggesting that if I have this histamine situation and resolve that, that I could expect all my head issues to resolve?
Iām suggesting to get histamine out of your diet along with sugar and see if your symptoms improve. Histamine intolerance isnāt vague. Itās effects are wide ranging throughout the body and addressing it could improve your condition. Failing that, try a course of steroids to see if that puts an end to the dizziness etc.
Weāre getting way off Topic here folks. @Rita might be worth you checking out some of @spinninggirl1 posts. She mightily similar to you and me and was heavily into histamine links.
I canāt do anything that increases my heart rate or it brings on my vertigo. Even power walking sometimes will do it. I miss yoga. Canāt do many of the poses without feeling it. Ugh!!!
Helen, that was well put. Iāve been a walker/runner most of my life and once the VM/MAV started. I could not walk unaided faster than about 2.5mph. That comes from someone that was used to walking 4 miles in dress shoes on his lunch.
Now Iām confined to the treadmill. No walking faster than about 1.5mph without being on the treadmill. On the treadmill, I can reach 2.8mph with something to hold on too, but absolutely there isnāt any way I could run. The last time I attempted to kick it up over 3mph, my feet got tangled and I would have gone down if not for the arms on the treadmill.
I have been clumsy all my life, but I was always able to run, until this.
I have always been a very keen cyclist, but I have not dared to go on my bike since the Vestibular Migraine diagnosis. My fear is that Iāll fall off the bike if VM hits. I go on walks and I also like strength training. I have to listen very carefully to my body when I do my strength training (in a gym). It seems to help with my painful neck and my hope is that it also strengthens my legs which is important when I feel out of balance.
Since chronic MAV Iāve always found walking the best option. Other forms of exercise just seem to confuse the brain and strangely enough the better Iāve been in terms of dizziness the more confused the brain seems to get with other types of exercise such as Tai Chi which I did do daily for four years up initial MAV went chronic and thoroughly enjoyed. I can carry out those balance exercises often prescribed by the medical profession the NHS etc, the stand on one leg type stuff, but my doctor told me in May after carrying out functional tests there is nothing actually wrong with my balance. Sometimes I wonder at the involvement of the repeated movement patterns is exacerbating the problem for me. Unaccustomed movement will cause symptoms. I recently spent 20 minutes scrubbing a floor on my hands and knees and that migraineous tight head and other symptoms for five days afterwards. Hardly a fair exchange. I do wonder whether the attached description of the Farmers Walk might well have some pointers within I can adapt into my walking to increase my exercise levels whilst āfoolingā my brain into thinking we are only going for our [usual] walk so I can avoid too many adverse after effects.
