Dear Friends. I know some of you and I have had our differences in the past. I am sincerely sorry if our disagreements created an antagonistic environment. But I desperately need your help. I'm pretty sure MAV is what I am fighting against here. The constant bowling ball head feeling, walking around on a trampoline, low level nausea, etc. It's nearing the point of being disabling. I started loosing weight again and dropped to 197 LBS, at one point loosing 12 pounds in 7 days because I just can't eat much. I know that weight doesn't sound bad, but I haven't weighed that much since I was 16(37 now), and I was not a fat kid. Just always very athletic and largely built. I'm 6 feet tall with broad shoulders. But I am having a hard time eating, especially considering that food is probably one of the biggest triggers. At least, the only one I can really control. I am also going through divorce. My wife is done with dealing with my illness and my disease. Cause this disease wasn't enough to make me want to check out, now I have to watch my kids go through this hell. So. My question. Have any of you ever had problems with a meal cooked in a crock pot? I made a pork shoulder roast yesterday but have been quite off balance all day. It had carrots, potatoes, cumin, salt, and a can of diced tomatoes and that's it. My anxiety has been slowly ratcheting up all day, along with what I think is brain fog? Perhaps that's what I'm feeling that I call anxiety. Pins and needles feelings all over my body and a distinct cloudy, very unpleasant feeling in my head. Does this sound familiar? MAV attack? Not having full blown vertigo, but I'd almost prefer that to what I'm feeling now. I know.... not really. Just holly shit this sucks. My doc has me on amatryptaline, 25MG. That's the only thing I'm taking for the MAV. I have an appointment with a neurologist on December 7th, but I don't know how much more of this I can take before I crack mentally. I was already hospitalized several weeks ago in a mental hospital because of thoughts of wanting to hurt myself. For those who might be wondering, I am no longer using cannabis, so that is not contributing to my anxiety. Just dear God I need some help. Help. I can't stop crying.
Hey, I hear you. I have MAV and it is torment...I also have days where I can't stop crying and often think about ending it all. Food can be a huge trigger, have you read the "Heal Your Headache" book by David Buchholz? I highly recommend it. Also two Facebook groups, 'Migraine Associated Vertigo' and 'Vestibular Migraine Professional'. Great support and info can be found there. There are so many triggers and symptoms that go with vestibular migraines, it can get confusing pinning down which ones affect you. I have stopped eating tomatoes as I suspect they could be one of my triggers. Caffeine is another for me, as is MSG.
Hang in there. Definitely check out Heal Your Headache. If it is MAV, that book has some excellent information. I went through months of feeling off balance constantly. I don't know why. Was it MAV or because my balance nerve was deteriorating? I don't know. Ultimately I was diagnosed with Meniere's and my doctor wouldn't give up on trying to find something that would stop the vertigo and dizziness. You don't have to live with it. How much salt did you use for the pork shoulder? I am very much affected by sodium and I try to limit myself to 1500 mg sodium/day. Do you drink coffee? I had to give that up too. Stress and anxiety are huge triggers. It sounds like you are going through a lot; I hope you have someone close that you can talk to. Find some time to meditate. Please check in here and tell us how you are doing. Yes this shit really sucks, but you will come out ok.
I did buy Heal Your Headache. Started to read it but stopped. It basically sounded like what I had already heard before so I didn't finish it. Stop using the acute meds that make it better, stop eating foods that trigger it, etc. I live in Colorado. Part of the problem is that I moved here as a younger man because my wife wanted to live here. She is surrounded by her family, but all of my family live else where. California, Texas and Virginia. My wife moved into her parents house a couple weeks ago. And now I live alone. I call my family all the time, but I don't know if that's enough. I talked to my dad tonight. And he offered, yet again, a spare bedroom for me and an appointment with his neurologist. My dad has cluster headaches. Which is every damn bit as bad as menieres disease and MAV. Worse in some regards. I am very tempted to take my dad up on his offer. The ONLY reason I hesitate, is because my children live here. Yet I'm no good to them if I'm dead. And the way my disease is heading lately, that's exactly where I'll end up if I don't get control of it soon. I'm not saying I want to end my life. But sometimes the anxiety is so high, I may just do something in the heat of the moment that I'll regret. I don't have any guns in the house any more. Thankfully. Should I move home? Tomatoes huh? I wouldn't mind never eating them again. Wasn't ever that fond of them anyway. I have been on a low sodium diet in the past. But it never seemed to help when I was symptomatic with the meniere's. JOH and acyclovir put that into remission. But this lingering problem still remains. Do you guys find that lower salt helps with MAV issues? I haven't been watching my salt for a long time cause it never helped at all when the meniere's was completely uncontrolled. Just lost too much weight to fast cause I couldn't eat enough food because it all tasted so damn bland. On the doctor front. I have an appointment with a neurologist. But how is he going to take it when I walk into his office and tell him I think I have MAV? Is he going to believe me when I have essentially diagnosed myself? I could give him an article written by someone who seems to have the same symptoms as me and just ask... "Could my symptoms be MAV? And can you help with that?" Would that work? Cause I'm afraid that he won't take me seriously. The last specialist I saw wouldn't prescribe the acyclovir based on the Dr. Gacek research, and so I've lost faith in doctors. I don't want to live with it anymore. I just feel afraid that it won't ever change or go away. I do have days that aren't as bad. Today was just a shit day. And maybe that is simply because I ate the tomatoes. Or the salt. Thanks for the thoughts.
So so sorry that your going through this, If you are familiar with my post you will See I have thyroid issues. I have noticed There is a bunch of people on this site That have mm and thyroid problems too If not viral, when I first started mm symptoms My thyroid was hyper lost 30 lbs in a blink Extreme anxiety and depression with that Boat like bowling ball head feeling too Please go for blood work and check it out Thyroid causes migraines as wells, feel better Keep us posted
Im so sorry you are going through such a rough time.It will get better.If I was you I would talk to my doctor or the new one for that matter about increasing the dosage of the amitrriptiline.That has helped me the most. my neuro said most times people are not given a high enough dose.I have a similar body type as you and I was on 50 mg for quite a while.It will also help somewhat with the anxiety. I gave up most foods with Tyramine which can be a big migraine trigger. Pork is one of the foods that contain this. Here is a link http://www.webmd.com/migraines-headaches/guide/tyramine-and-migraines Maybe you need some time away from your situation and your Dads offer of a place to stay might be what you need. The pins and needle feelings is migraine,the symptoms you mention can all be migraine. Your brain needs a chance to cool down so to speak as it sounds like you are in a chronic migraine loop where it is always there. Good luck. Please continue to post to let us know how you are doing.
Its been a vicious circle for you. The anxiety of the MAV plus your relationship and not seeing your kids as often as you used to has inevitably made you worse. Let me tell you that things will get better, you need to start believing that. I had (have) MAV , I got divorced and I went from seeing my kids every day to twice a week. I don't believe that it would be good to take your Dad up on his offer. Maybe for a week or two to get some love and attention but not permanently. Believe in yourself and be strong, your kids will want you to be. You need a good friend to lean on at the moment. I'm sure you would do the same for your friends. On the food trigger side. If you already have the heal your headache book take notice of the 2 pages of listings of food and drink triggers and like James said avoid food and drinks that are high in tyramine. I decided to start from scratch on the advice of a lovely former forum member Jordan. That's what she and her husband did for his menieres/mav symptoms. Also take great note of the chapter on threshold. What you eat one day may be a trigger but the same food may not be a trigger on another day. It all depends where your accumulated triggers are at any one time. I used numbers to prove that to myself. For example if you use 100 as the threshold where you will suffer from triggers try to keep your threshold level below that figure. You will get used to that system. So lets say your threshold today is 90 and you have something like aged cheese which is high in tyramine, it could push you way over the 100. But if your threshold is say 75 the aged cheese may not cause you problems. The key is not to accumulate food and drinks that are high in tyramine or are listed in the heal your headache book as potential triggers. It worked for me and would probably work for most Mavvers. To go back to Jordan's recommendation. I decided to eat what she suggested which was egg on toast . I had egg on toast for three days for every meal. Obviously doesn't have to be egg on toast, can be anything that is safe. That got rid of my accumulated triggers and I gradually added another safe food each day, Something that Buchholz in his book said was safe. There were a few setbacks but because I was able to pinpoint them I gradually built up a diet that was trigger free. I don't know whether you have menieres and MAV or just mav but I had both and what I used to give me some stability was Serc or betahistine together with a dissolving pill under my top lip which was called stemetil ( brand name buccastem) careful though with your other medications. Obviously speak to your doctor. I took amitryptiline for a few days. Never again I was like a prisoner in my own head. Not for me. Best of luck, take a few deep breaths. You are only young and can have a good life ahead of you. You will meet somebody else I'm sure. Kids are adaptable. As long as they see you on a regular basis they will be fine. Frank
I had a period over a year ago (about 4-6 weeks) where I was constantly off balance, not full vertigo but dizzy/off balance, nauseated 24/7, brain fog, sluggish, etc...About 2 weeks in I remembered meclizine which I was given for full vertigo (doesn't work for me) and has been sitting in my cupboard. I took that and within an hour felt better; as it was wearing off worse again. I took the meclizine 3-4x day for a couple of weeks and then was fine. Not sure if it will help for you but wanted to share. I have a slightly different opinion than others about your dad's offer - personally, even though it would mean leaving your kids for a period of time, I would go to your dad's. First because if you are surrounded by someone who cares, perhaps get a good dr appt, but most important have an opportunity to relax and destress it could be the difference to breaking this horrible cycle. Then when you feel a bit better you can return closer to your kids in a better frame of mind. Sure you could push through, but as you sink deeper it is harder to dig your way out. As you struggle, it is harder for you to be a positive impact in your kids lives. Just my opinion.
Vitology - I live in Denver. I have been very challenged with the doctors in this area so you are not alone. Please PM me and I'll be happy to share my experiences with you. Please take care! We are here for you!!
You are right. I do need a good friend. Problem is I don't have many. My co-workers are some of the best "friends" I have in the area. But they can't really give me what I need. I need someone who lives in the same house as me, or me in their house, so that I am not alone at night. That's the worst time for me right now. Night time, after the sun has gone down. My motivation gets extinguished like a candle. And if I've been having a bad day with this disease.... My Dad's offer is really tempting. I'm basically going on an elimination diet, like one or two of you suggested. No foods except foods I know to be safe. So far, that list has like 5-6 things on it. And perhaps with an increased dose of amatriptaline, that might put this into remission. I desperately want to stay, but my children would be far better served in the long run having a father who is alive, than having one who is not. I've been fighting this disease daily for months. And I'm tired. Eggs on toast wouldn't work for me unfortunately. I dearly wish it would. Eggs make me sick to my stomach. Just a food intolerance I think. So my safe list contains the following: chicken, brown rice, milk and rice chex with some honey, and a few vegetables, asparagus, broccoli. Does any of that sound suspicious? I'm going to be buying organic milk. Meclezine doesn't usually work for me that well. But perhaps taking it more frequently? That might be interesting. I'll give that a shot too. I do truly want to stay here. The idea of not being near my children hurts like hell. I can't even describe how much. The idea of them growing up without a father hurts more. And it would not be permanent. Only for a short while, some months perhaps, till I can get this under control. The idea would be... not being alone when I have bad days. My Mom and my Dad both still live in my old home town. So I would never have to be alone at night. I have very few people here who give a shit what happens to me, and basically nobody who I could call and ask to come spend the night at my place to help keep me safe. Just having someone in the house would be a tremendous benefit to my frame of mind. At this point, my frame of mind is fragile enough, that one more bad day, and I'm calling my Dad to come help me move to California. Sister in law is a realtor and she can sell the house. No more bills, and 60% of my income on short term disability give me 3 months of no worries. Or at least, none of the typical worries. Cell phones are cheap and I can call my kids. Not the same as being here for them, but the alternative....
Vito I will tell you my son has suffered From mav since a small child would be in Bed days at a time with spinning room he could Not read play video games or anything Got so bad he was haulisinating , all related To sinus problems from allergies. I thought He was schizophrenic . He was started on Singulair with Zyrtec daily after a month (Compared to years of his migraines) he was Normal to the point he only needs excepting Migraine. He is now high functioning 21 yr old The dr was brilliant and said it was migrain Aura ( believe that's the correct term) and said The singulair takes time to worn not to stop Maybe give it a try with an allergy pill?
I have had chronic sinus issues for the last 15 years. In addition, I've wondered if living at this altitude (Colorado Springs is @6500 feet above sea level) has contributed some to my issues. I've had moments when I went home and to other places at much lower altitudes, where my symptoms seemed to disappear. Perhaps the higher oxygen content in the air at lower elevations, or the barometric pressure, which will typically be higher at lower elevations due to more atmosphere being above you, was a factor. My old home town is 4000 feet lower than it is here. I stopped taking my allergy meds because I was trying everything, and the zyrtec I was taking says on the bottle, "may cause dizziness". Perhaps I should start taking it again. My sinuses have been more congested than they were. Of course, cannabis use does good things for allergies, and with my recent hospitalization in a mental hospital, they advised me to stop using it. Though now, I wonder if it was playing any roll at all in my hospitalization. The way I feel hasn't changed much and I haven't used in weeks. There is basically no THC in my system anymore. I have a very low body fat and I'm very active when I can be, working out and such. I could probably pass a urine test right now if asked to. But the anxiety hasn't gone anywhere. It's just this disease that is making me crazy. The doctors at the mental hospital don't get that though and accused me of talking like an addict, even though it is not physically addictive. But it did make this condition FAR more livable. When I was using it, my body weight was more or less stable at 225, which for my frame, height and activity level is about perfect. Perhaps an experiment is in order.
I think you need to get emotionally in check because you're going through a lot and it sucks. Anxiety itself can cause imbalance dizziness that mimic MAV. I would first notify your doctor about everything you wrote here especially the anxiety you're going through so he may offer some kind of relaxant/tranquilizer for times you need it, so you can calm down and relax. At the same time I would go see a good psychologist that you can talk to. Not only will they help you with what you're going to through and the decision making process, but they can sympathize etc just like a friend would. I prefer female docs and psychologists you might want to go for that too. I'm male as well. Hopefully this will help you calm down and get rid of or minimize the mav like symptoms.
There's a lot of truth in what you say. I have never faced this much anxiety in my life. And for a kid who was abandoned to deal with tourettes syndrome on his own, that's saying something. I've been to my share of therapists, but the issues were always clouded by the fact that my wife was involved, and in retrospect, my dad tells me that I have been systemically victimized by some of what she did to me. The issue also seemed to be clouded by the fact that male counselors never seemed to be able to empathize like I needed. The few sessions I've had with female counselors, I always seemed to connect with them better. Finding yet another professional to pay more money too... when I'm already going through divorce and thinking about going on disability... Good god when does it end... lol
Have you ever looked around you at the ruins of your life and thought, "Surely this is a bad joke and I just missed the punch line!". Or that "Surely I'm just stuck in a nightmare and eventually I'll wake up!". On the bright side, this still isn't as bad as the dark days last year when the full blown vertigo was uncontrolled. Then I truly did come close to offing myself. At one point, I just stopped eating, thinking my heart would eventually just stop beating. On an infuriating note. I called my primary care doctor to set up another appointment with him to talk about upping my dose of amatriptiline. The answer I got... "The first appointment is January 24th". When you can't get in to see your doctor for 2 months and you tell the lady that your situation is dire... yeah. That system is FUBAR.
You should get some blood test done again the thyroid Causes major anxiety and weight loss tremors and migraines the Zyrtec Alone wasn't the answer for my son it was prescription Singulair it blocks allergens You prob are right on with the altitude In Colorado too. It takes time you will find The answer. We all sympathize and here for you
Thank you. Part of my anxiety is literally that I can't seem to find anyone here in town who gives a damn that my life is on the line. It seems that's a rare thing. Perhaps it's just not their job. But the person who is supposed to care, my doctor, can't see me for 2 months....?!? That doctor, is part of a the biggest medical corporation in town. A big organization with half a dozen offices in the Colorado Springs area. They obviously only care about seeing the most patients they possibly can and don't limit a PCP's patient load so that he or she is available to people who need them in a timely fashion. Yeah. FUBAR. Thanks for the sympathy and the compassion. That's a rare thing apparently.