I am new here. I joined May 28th when I had a set back. I was diagnosed with MAV after they checked everything else. The waiting was extremely hard because I honestly thought I had a brain tumor. 1st episode was 2 days in 2011. Second was 3 months in January 2012 then again for 6 months in starting November 2013. Once I knew it was MAV I was able to relax through the head pressure. Quality of life-0. There’s nothing that compares with this because I couldn’t listen to music or even eat at a restaurant. I couldn’t focus on a conversation and people started thinking it was depression which really upset me because it wasn’t. I wished they could feel what it was like for just 5 minutes then they could at least understand. I was given different options for neds(sorry its written down somewhere but never took it. It was very strong, also used for seizures and could create weight gain.)Any natural remedies I asked. My neurologist who wore a really fancy bow ties said YES with enthusiasm which surprised me No coffee, eat protein immediately apon awakening and take 400mg magnesium. Drink a ton of water. Big improvements happened but still had sensitivity to noise. I went to a chiropractor who also is main chiro for our NHL sports team and he immediately fixed the noise sensitivity. Still I would get episodes during my period. I started taking tyro trypt from a lab called nutri chem and I never had any head pressure or vertigo but I never linked it to being the cure. I thought it was chiro and mag. Stopped taking tyro trypt because of surgery coming up and head pressure came back. Started taking progesterone and MAV completely stopped. Had to switch meds before hysterectomy in January so as soon as I stopped progesterone MAV was back. My doctor told me I could go back on progesterone but there is a small risk of breast cancer so I had to decide what to do and thats when I joined this forum. I was back on coffee at that time, saw some posts here and cut it out but still had head pressure. Thought I would try tyro trypt again and it completely got rid of my head pressure. Its crazy, I even added my coffee back. It feels too good to be true to be honest. I told my chiro this news and he’s going to put it back on his shelf again. He actually forgot about it and stopped carrying it. If it could help anyone else that would be great. Its not cheap. I take 2 before bed every night. I don’t follow the prescribed dosage and time taken. The amount they recommend on bottle would put me in the poor house. 2 work great and my quality of sleep improved so much since starting it again. I hope this helps. Progesterone helped while on it. Now Tyro-Trypt from NUTRI-CHEM. If you Google it, it will show all the details. I’m pretty sure they ship anywhere. Also the staff are very helpful and professional. I’m from Ottawa Ontario. We have 2 stores in our city.
Welcome Jen and thank you.
This is a good combination compound, but everyone be aware it can’t be taken in combination with Rx migraine meds as it has effects on serotonin, norepinephrine and dopamine. It’s good for individuals that have trouble with methylation of B vitamins and potentially hypothyroidism. This is powerful stuff and should be tried as a natural remedy separately from any Rx.
I suspect the seizures drug suggested would have been Sodium Valproate. Sound familiar? You don’t mention the strength of the drug you are now using. Just thought to mention for anybody interested who might not have access to your chosen brand. Glad it’s helping you. I have not heard of it previously although that could be because maybe it’s not available in the UK. I’m unsure. I have had a quick look but couldn’t find it. Might be around somewhere. 5-HPT which appears to be one component is in plentiful supply.
Anti seizure drugs are numerous. Topirimate is the most commonly offered. Gabapentin is one too.
Yes thanks for adding that. It can’t be taken with any antidepressants. It is all natural but powerful so I appreciate your added info.
Those drugs don’t sound familiar. I will try to find the name of the drug just to see if its one anyone is familiar with it. I was able to take time off work to try things naturally but if I didnt have that option I would have taken the prescribed medication for sure. The tyro-trypt is from a compounding pharmacy and clinic here in Ottawa Canada called NutriChem. Medicinal ingredients - L-tyrosine 375mg, 5HTP 37.5 mg, vitamin B6 9.4 mg and non medicinal ingredients- hypromellose, gellan gum, potassium acetate non GMO GLUTEN FREE
It claims to elevate mood, improve sleep, suppress cravings, increase energy, reduce pain. It has done all that for me including reduced back pain every morning I walk. It says nothing about vertigo on it. I just know it eliminated my head pressure. My head pressure is a feeling of not being able to concentrate or focus. I have to really concentrate to have any conversation and I have anxiety from it because I feel like I can’t multi task or enjoy any social event. Its not like my vertigo where I couldn’t function at all. I don’t have pain ever during any episode of vertigo or head pressure. I have all the symptoms of a migraine without the pain. Sensitivity to light, noise and can’t take in information without totally being exhausted from the need to focus. Tyro- trypt can’t be taken if taking anti depressants without talking to a pharmacist first. Its for adults only. If there is anything else I can find out about this for anyone please let me know.
Much like me then. There’s quite a lot of us around. So many in fact I never cease wondering why more doctors still don’t recognise the symptoms when they see them.
Interesting. I have taken Tyrosine twice before but it gave me way too much energy. It made sense because it supports catecholamine production and my initial avenue of research was into burn-out / adrenal support. I tried it a second time when I was researching into PTSD and how soldiers are found to have reduced norepinephrine levels in the brain. Being on high alert and not spending enough time in the parasympathetic state. This also links to cerebral vascular issues.
My current stack already has B6 in the form of P5P and I use Tryptophan over 5HTP as it has a greater effect on me. I’ll add the Tyrosine tonight and see what happens!
I have never connected through a forum so this is my 1st experience hearing from anyone with the same symptoms. It seems for me there was an initial event causing vertigo which was an inner ear infection which was connected to a traumatic event when 18( still not 100% sure of connection) then when all similar dots connected recreating the event which I can describe as needing to be extra on and hyper focused in my job, I ended up with MAV vertigo. So not inner ear but for whatever reason My brain stopped certain pathways possibly Idk? I always wonder if it was a blessing in disguise because if forced me to stop worrying about all the fine details, possible scenarios, wanting to be everything I can be to help with a project or person in need. It shut me down and I had to rest. There was no way out. I had to accept this and when I tried to push forward, it was like trying to negotiate with my head in a vice. It wasn’t possible. It was really shitty but at the same time it stopped my brain from over working… I was able to see outcomes before they happened before, different scenarios would play out and I saw it all. Now I let it all go. I almost look too calm but it’s because I just can’t be hyper focused like I used to be.
I believe you can arrive at MAV from different avenues but more often than not I think people earned it via lifestyle. It’s a form of pretty extreme burnout for people who have genetic predispositions for it to manifest into migraine, tinnitus, vision problems etc. You’ve lived in a stressed out state for too long. Constantly running on adrenaline becomes the norm. Even if your diet wasn’t total trash your blood sugar is constantly high for that energy to get the to do list done. Over time you gain insulin resistance / hyperinsulinemia. This destroys nerve tissue, causes NAFLD so methylation is poor and has you falling into hypoglycaemia too often. Now your metabolism is off and your endocrine system is like a rollercoaster. Energy is down, sleep / wake cycle destroyed so rest and repair is a distant memory. The brain (headache), ears (tinnitus), eyes (nystagmus/snow) that rely on stable blood glucose levels and efficient microvascular circulation get effected. Thick blood and electrolyte imbalance from pre-diabetic dehydration is now your fuel source. You are now in the ‘MAV TRAP’ where you have exercise / stress intolerance and food sensitivities so nutrition is poorly absorbed to right the wrongs. You are ‘anxious’ because your response to any stimulus (heat, pressure, light, sound) is adrenaline because all systems are down. This is way more than migraine because living in this deficient catabolic state for too long will lead to autoimmune issues and other complications. It’s really serious.
I was crazy focused on my career looking at multiple monitors for 10-14 hours per day and my down time (rest and digest) was listening to loud music in the gym repping it out… making gainz! Then I’d eat a large meal way too late in the evening and watch horror films or true crime stuff just to get the heart pumping… and then some time with the girlfriend! I knew I was pushing my luck but because I was noticeably advancing in everything I didn’t give up. I never got a cold or some other illness for 2-3 years so I thought I had everything sewn up. I was watching TV in the evening and suddenly my heart started to race, I then felt sick and thought (wish now) I had food poisoning. Tinnitus kicked in and as I got up to go to the bathroom to have a technicolour yawn I fell to the ground and got vertigo for 7 hours straight. Game over. There are parts of me that see it as a blessing to slow down but I still overwhelmingly want to be who I was as I have lost everything over the past 3.5 years. Girlfriend, health/physique, career, money, social life, happiness. If I can get it back, then great… lesson learned but if not then like I’ve said before the punishment doesn’t fit the crime.
I took Tyrosine last night and… I got a grand total of 3 hours sleep so not one for me at bedtime. I’ll continue for the next week or two with 500mg in the morning along with other supps and see how it goes.
Andy you just described what happened to me exactly with food sensitivities, the whole body and brain response. The punishment does not fit the crime. When I wrote that I thought its not true, it could never be a blessing. I quit my job this year having to make that decision after taking my max of years off. Friendships were tested and most people didn’t know how to hang out with me. No music, restaurants and I couldn’t talk for too long because it took everything out of me to focus. Food sensitivities are so high now. I was having full out anxiety on Friday nights only and realized it was 2 Oceans white wine from south Africa causing them. Too many sulphates I guess. Sundays vertigo worse so not sure but think its bacon. I cant eat anything pickled or my skin goes crazy as well as jalapeños for some reason. I have never had any description of why before but I think you explained it so well. I’m going to read your post again and let it sink in a little bit more to understand it better. So sorry to hear of your loss. It takes a really incredible person to be able to stick by and be patient through this. My husband is very high energy super productive so it was extra hard for me to just lie around waiting to feel better he would have to hold my arm anywhere we went. He did it though and I’m so grateful. My kids were great too but you could see a wonder in their eyes like is she really feeling this way. Doubt starts to set in with people because they can’t see what we are feeling and seeing. One friend said I wasn’t the same like it was brain damage. I’m not the same because that hyper engaging trying to be all and everything is over in my life. I’m me. My brain is relaxed and I am trying to figure out whats next
To me what sounds like it might be next good step - The John Hopkins Migraine diet. Give it a go. There should be links to it from here but probably just as easy to Google it. If memory serves it comes on back end of a good medical article relating.
Just FYI ‘silent’ migraine’ - without the headache is fairly common. Sometimes the headaches start much later, even years on and sometimes they just replace the vertigo. I had sick headaches as a young girl then decades of perfect health before the vertigo started. Then 14/15 years later, a couple of years back, I had my first ever classic migraine complete with aura. Of course neurologists have, recently, started to tell me that the head pressure feeling is the migraineous element and I have had a fair slice of that over recent years.
I looked up the diet and I can’t believe it has so much on the NO list that I already know I can’t have. This is going to be so helpful thank you very much. The tyro trypt plan is working for me but I still get head pressure with certain bread and now I know why. I cannot drink tea at all… I’m entertaining this weekend so haven’t really looked at it in detail but I cant wait to alter things and feel better. This forum is so amazing.
You nailed it. I think the threshold is much lower for those of us with PCOS because it’s all the same story. We’re massively predisposed.
I can. That’s why I mentioned it. Jump out and punched me straight in the face your words about food sensitivities did. Incidentally that’s much like me too.
Yes 'our’forum is pretty amazing because we are a little gang all prepared to Give Back. With such a condition there is nothing like shared experience.
It’s a lifeline, a Godsend, a community, a family. Mvertigo is the single most important factor in my mental health.
I think so, Emily. Most people have something that their bodies will regress towards if pushed hard enough unfortunately. I wish I was taught a little about genetics, health and nutrition at school for a heads up instead of playing rounders and baking fairy cakes so much
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