The part that really interested me was learning about the importance of histamine. When MAV started for me I was suffering badly from hayfever. It was April 2009 and pollen was high. I took antihistamines which had been ok previously but felt strange after taking one this time. Then a few weeks later took another and the next day I felt dizzy and have been ever since. When it all started I was always telling the doctors about the hayfever/antihistamine link to my weird symptoms. I thought at first the medication had affected me/drugged me. I kept banging on about it but in the end all the doctors said it was a coincidence and irrelevent to my dizziness. I never took another anithistamine since. I noticed that every pollen season my MAV symptoms get worse but until a few months ago, I thought I had labs/VN so could not find any link to histamine and my symptoms. Then I discovered I have MAV and I find the link between migraine and histamine.
Itās also interesting that the foods that are off-limit on the migraine diet are off-limit because they are HIGH HISTAMINE foods!
I have a list of high histamine foods typed out. One day I had a pile of spinach for dinner and within the hour had a really severe vertigo attack. Usually my bad vertigo attacks started up in the morning around 4 am so this was odd, I checked out spinach and it was very high histamine so I havent eaten it since.
Oh I have just read the link, how interesting. I had a glucose tolerance test done at the hospital and it showed I have reactive hypoglycemia. My blood sugar levels go down below the base level soon after I eat, if I eat the wrong things. I also did saliva cortisol (4 x day) tests, several of them in the past, and it showed very low cortisol at lunchtime and other times of the day.
It seems that I have all of the problems on that link, no wonder I have so much trouble controlling my migraine and dizziness.
I too have wondered many times about the histamine link. Iāve read lots too. And like you Christine I made a list of histamine foods. I still canāt quite put my finger on it though. I also have to watch my blood sugar levels and I own and have read James Wilsonās book on adrenal fatigue and have been down that route at some length. Still I find myself with certain allergies, which Iām sure have a link to MAV and obviously histamine but again I can never come up with definitive answers that serve me in a consistent fashion.
BTW Christine, do you react to opioids in food, like those in wheat and milk? I do and I was surprised to learn after a reaction to eating spinach that it too has an opioid peptide in it, rubiscolin.
Thanks for the link Jem. I shall read it again and digest it more carefully. I always like to poke around a bit and get behind the scenes of these reports. Interesting though.
Christine and Brenda thanks for your comments. I am sure this info will apply to quite a few of us here. I remember a lady on another forum who thought she had labs/VN but she had been suffering for 5 years or more and always talked about her allergies making things worse.
Yes I too have noticed the link between feeling worse and blood sugar levels and also I had considered the adrenaline/cortisol thing many years ago before I knew anything about migraine. Itās so interesting to me that all these little things we notice and links we spot which the doctors usually donāt think are relevant are actually relevant and are all clues as to what is really the matter with us x
Brenda, I read a load of stuff on āadrenal fatigueā too, quite a while ago, I fit all the symptoms on the list, and I certainly have had a lot of stress in my life, more than most of my friends have. I had not heard of the opiods in wheat and milk, I will need to do some more reading. How do you react to those? Do you take codeine in tablets?
I do notice feeling nauseous and dizzy after just a half tablet of codiene. I was very dizzy following a day of eating 4 or 5 crackers which were in a tin we had been given for Xmas. I usually eat one to one and half slices bread a day and thats it, that doesnt seem to affect me, but I went on the slippery slope after eating a large quantity of the cadburys chcolate range at Xmas.
It is strange, when I get myself stable, keep to the migraine diet, I just have this dizziness start up every morning but I cant get control of it until I have a tiny quarter of one tablet of veganin (its barely nothing) but enough to get my head straight, That tablets contains codeine and caffeine but its a very small portion in what I take. I cant get off that or I go downhill. When I tried to cut out caffeine (as I havent drunk caffeinated drinks for years and dont generally eat chocolate) but have this small amount in the tablets, so I went to paracetamol and codeine but had to consume more to get control, then the codeine made me ill.
I never drank cows milk for over 10 years until recently, I drank Rice milk, but I have not noticed a difference with the cows milk. I have always had small pieces of cheddar cheese. I think wheat is worse for me than the milk. I will have to see if there are any other foods with the opiods in to see if I know if I react to them.
Hiya Christine, sorry to have taken so long to get back to you. I came across the opioid idea when I was looking into why I reacted to wheat and dairy. I gave both of those up right at the start upon the recommendation of a friend and I kept off them too when taking up the headache diet. Every time I tried either, it affected my measure of dizziness. I can tolerate a teeny bit now but mostly I really donāt bother any more, not worth it.
Anyway, I found out from my reading that both wheat and dairy contained opioids and when I looked up what those could possibly cause sensitive individuals to feel I thought āAhaā, that sounds like me. Further clues followed that I might be reacting to opioids: when I left wheat and dairy off I felt SO bad, just like when I was coming off benzos in my twenties. Similar disorientation, weird and dizzy feelings; VERY similar feeling to when I used Feminax in my teens for period pains (contains codeine which I didnāt know back then); when I had morphine during my hysterectomy afterwards as I slept/dozed I could feel how I do just prior to a bad vertigo attack (which never materialised though). The common factor in all of those was opioids of some sort. So it dawned on me gradually that my theory of the opioid connection might be right.
The spinach episode was the clincher. I had no idea why I had reacted to it. But, playing detective as usual, I found out about the rubiscolin. Lightbulb moment again!
Iāve found a few really helpful web sites, one a blog, where folk seem to have the same reactions to opioids as I do and who came to the same conclusions. I donāt think I have kept the links though. But Iāll have a look and if I can find them Iāll post them.
As I said, I do seem to be able to tolerate teeny weeny amounts but with me a cumulative effect seems to be in operation. Like you, I went a bit mad over Xmas, thought Iād got away with it but after fours days (itās nearly always three or four days, trying to work out why)it hit me bad! I felt āout of itā and totally disorientated, had trouble with lots of things I usually cope with OK now. One thing I have noticed, once I indulge I almost feel addicted and canāt stop wanting to have more and then more stillā¦ far and above just being greedy. You used the term āslippery slopeā, itās a good description!
Hope this sheds a bit of light on the subject, although only my personal experience,
I have a silly question but Iāve been taking bĆØtahistine for months. Its structure closely resembles that of phenethylamine and histamine.
Could this have made the headaches/migraine/fatigue worse?
Just wondering. Iām slowly quitting now though because itās not really doing anything for meā¦
I took betahistine for a while. It didnāt really help at all and when I went to see the audiologist for tests she actually told me it made migraines worse and took me off it. But I think Christine, if Iām recalling correctly, has taken it for a while and thinks it does help her.
Yes, I have taken it for years, it helps me, but it took a while to take effect. It doesnt make my migraines, headaches or dizziness worse, it helps the dizziness. it is supposed to drain fluid away from the ear. I am very sensitive to meds, I tried over 20 preventatives and got side effects from a very small amount but I can tolerate the betahistine. If I stop it, I get worse. We are all different, they thought I had menieres to start with so I might have more involvement with my ears than others.
Thanks for the feedback!
Iām coming off the betahistine. Maybe it IS working for me but I donāt feel it.
Maybe it will be worse I donāt know. I do have a lot of ear problems too, thatās why sometimes I think
I have meniĆØreās, but when Iām on the Meniere forum there is a lot I can relate too and but also many things donāt match.
THE MeniĆØre specialist in Belgium ruled it out but didnāt want to say MAV either soā¦Confused!
The fatigue started after two months taking betahistineā¦
Iām seeing a doctor this evening regarding food allergies (my last bloodtest showed antibodies for gluten) and heās helping my friend with her histamine intolerance so I will ask him.
This is SO interesting! I noticed a few years ago that i felt significantly dizzier and light headed (before MAV hit) and that i didnāt feel like this when i didnāt take my hayfever antihistamine. So i realised i just couldnāt take antihistamine! VERY interesting x
Another āpossibleā cause I tend to return to when having a few off days. I cannot account for is a possible Histamine link. I am unable to activate the link in @jemās initial post in this thread which is old now but have just rediscovered one I did come across before which I thought others might find interesting. Without becoming obsessional about it, itās always good to continue looking for a definitive answer.
Reading this article with the Migraine Diet in mind opens ones eyes. Perhaps these migraine diets arenāt as random as they might at first appear. Then to read of the advice to take magnesium shows a further suspected link. Several years ago I read of other people taking Ami for migraine which had stopped working after six years due to histamine intolerances. All fascinating stuff and possibly somebodyās somewhereās definitive answer. Helen
I really think you might be on to something here - I have been suffering with chronic VM and just out of interest I decided to decode some of my genetics from an old 23 and me test I had for different reasons - I have both MTHFR gene mutation, but more interestingly, I also seem to have mutation in the ability to make DAO and to break down histamines.
Just out of interest, I decided to take Loradine (not spelled right) in addition to my Pizotifen. I experienced such a change in my symptoms. At least 25% better and feeling nearly ānormalā for the first time in 6 months! I am not going to shout from the rooftops because ultimately we all know how unpredictable MAV is. I also realised I had unknowingly been eating many histamine containing foods - cinnamon, olives, dried fruits. I had a banana and got the WORST headache the next day.
I am trying to find the root cause of this condition for me, and I think this could be a valuable piece of the puzzle! Now on low histamine diet and DAO supplementation. I have tested positive for Mold in my gut and am having other investigations such as Mycotox profile, as mold exposure, although a little bit of a controversial area, can āturn onā the genes through environment as per epigenetic theory!
I looked at Histamine for a while and it certainly plays a role. I looked into genetics also specifically COMT, MAO and NOS3. I didnāt want to get tested though as i donāt want some company pinning a murder on me in the dystopian Minority Report-esque future lol (kiddingā¦but not)
A lot of type A personalities tend to run with high histamine in their systems as its one of many excitation neurotransmitters and what contributes to racing minds etc. Really helpful when we are healthy and highly functional but a real problem when sick as you will easily tip over into anxiety / nervous energy.
There is a genetic predisposition but also environmental - looking at stress (sure) but also diet. I wager a number of us have NAFLD and there is an over burdening on the liver and thatās why there is a delayed response to some of the trigger foods - it builds up. In migraine they talk about thresholds being reducedā¦ your metabolism of chemicals has been compromised. I also tried to find a link to gym goers. Its frequent eating, insulin resistance, high histamine foods also. Spinach, nuts, bananas, tinned tuna etc Before i crashed i had Supermans energy. Waaay too much. My nervous system was lit up like a Christmas tree constantly.
I also take DAOsin if i eat pizza and drink beers and supplement with P5P on the night (as and when). Eat foods that help with histamine intolerance like asparagus, ginger (before eating). Migraine diets are almost identical to an AIP diet. Look at MCAS and Histamine Intolerance symptoms / diet etc.
There is also a link between Histamine and chronic pain state. You will naturally have high amounts of Histamine, Cytokines, Substance P, CGRP (Emgality anyone) etc. floating around your system.
Very interesting you mention insulin issues - I have PCOS which is directly linked with this!
I totally agree RE minority report future - I am a bit annoyed with myself for giving away my DNA so freely.
I also agree RE energy levels - i didnt realise how much energy I have / had before MAV hit me - I am like a duracell bunny or I am crashed out, no steady in between pace. Trying to change that now!
Have looked a lot into MCAS and wonder if I have it - if I try to detox in any way i get super reactive and dark circles - which would go with your theory of an over burdened liver.
I dont really like being on Pizotifen, and I am wondering if the part that was working was its weak antihistamine effect, and if my symptoms could be more controlled by a simple anti histamine. The med has made me gain a load of weight in a short time period, and I want my serotonin back!
Mavāers struggle to control their blood sugar amongst other things and the liver is linked to this. Say in the morning you may wake up with head pressure and anxiety due to hypoglycemia. Cortisol and adrenaline are released and the liver is used in gluconeogenesis to get that energy to the brain pronto. The energy production pathway seems to be disrupted. Chronic fatigue, wired but tired.
If you donāt like being on Pizotifen iād recommend you come off it if you have given it a good go. No medication will fix this issue BUT they might buy you a window of time to calm the nervous system whilst implementing life changes with a level head. Depending on how fast and hard you pushed yourself to get into this mess depends on how long it will take to slowly walk out of the woods.
Have a look into SAM-e for OTC serotonin bump BUT DONāT TAKE IT WITH MEDICATION that also raises Serotonin. If your body type is like mine then it could cause anxiety / tachycardia but if not then it works like an antidepressant andā¦ helps out the liver and methylation.
Strange how you posted this when you did. Itās peak hey fever season here and thus year I have double whammy. Being too near a building site I more than suspect my enhanced dizziness symptoms are because high dust levels are causing much increased symptoms so I have been looking at antihistamines which is usually as far as I get. I donāt seem to do antihistamines which is one reason I avoid Pizotifen. More recently Cetrazine might seem appropriate however having been given Cinnazarine once at hospital for nausea associated with GA where one tablet made me so dizzy I couldnāt stand up (in my pre-MAV days) I can appreciate a migraine/histamine connection but have yet to grasp the link.
For 1.5-2 years or so I took 5mg Cetirizine Hydrochloride daily (Brand name Reactine). I would break the 10mg pills in half to save money. 10mg was too much and made me tired and mentally slow. My Neurologist/Psychiatrist told me that was an impossibly low dose. However, it worked for me. I could spend more time at work, social functions and at the gym. The weird thing is that the migraines/dizziness would return after about 30 days or so. After 30 days I would take a break for a 2-5 days and go back to the regular dosage.
This past winter I thought the 5mg Cetirizine was making me worse so I stopped taking it. I also thought it was contributing to some mood swings and making me mentally slower.
However, now I might go back to it. In the COVID era I seem to be doing worse. Not sure if it is spring allergies, stress or something else but I generally do not feel good. I havenāt worked since mid March. My usual schedule was a paltry 25 hrs a week of work, and I havenāt even worked an hourā¦