I joined this forum in November in full-blown crisis mode, unable to walk, drive, look after myself, etc. with severe disequilibrium. I lost 20 pounds in 1 month trying to cope and had to frantically move out of my building because of the elevator.
Since getting the MAV diagnosis (and with help from this site!) I have been slowly improving. I have seen two great doctors in my new hometown of Boston (Rauch and Whitman) - gotten on the MAV diet, been taking magnesium, following the recommended regular sleep and meals protocol, taking daily walks and trying to get enough water (the latter is not perfect.) And, I have been on low-dose Effexor - 37.5mg, which is a Tim Hain favorite. But having just read through the Survival Guide again, I noticed mention of there being no evidence, aside from anecdotal or placebo, for the efficacy of SSRIs.
Scott, or anyone else, what do you know about that? While I am better, and can drive short distances, I seem to have hit a plateau. And sometimes I go backwards a bit. I can’t really use a computer much, and watching videos or TV is tough. I fear this will be my new normal. I need to work again soon, and not being able to use the computer is obviously a big issue.
I have been counting on Effexor to work. But I wonder if I picked the wrong drug. I am pleased with the anti-anxiety effect and the slight mood elevation. Having had depression and even more so anxiety in my past, it seemed a good choice, putting the future withdrawal issues aside for the moment. I also like that I won’t gain weight like the Nort for instance, because I have a tendency towards hypertension at a BMI over 25. (Plus I like having my 25-year-old shape back!)
I know everyone ends up picking a drug that seems to work for their particular profile. I first tried Topamax and couldn’t tolerate the side effects. Are there any other good anti-anxiety options that don’t make people gain weight and don’t have potential long-term health consequences? And where can I find research on SSRIs not being effective for MAV? Anyone else with anxiety finding a great drug that works for MAV?
Suzanne, I had problems watching TV and using a computer until I tried Amitriptyline. It worked almost immediately (significant relief within days, more relief when I upped dose a month later) I remain on a lowish dose of 20mg nightly.
So glad you have been making progress. Be prepared for a long road, but I believe after having had this for 1.5 years so far it leads towards recovery … I almost don’t feel the dizzies now … let’s hope it actually gets there!!
@shazam I don’t know how to answer your question. I’m at a crossroads with SSRIs myself. I’ve had dizziness for 5.5 years. When I first had symptoms I could still work and function, wasn’t nearly as bad as I am now (apartment bound, can’t drive, can’t go out without assistance) I tried Zoloft for 3-4 months (I forget the dosage but probably the lowest dose) and it didn’t do anything for me that helped. I didn’t notice any difference, improvement, or side effects. I was put on Prozac, I don’t even know why, it’s not noted to help dizziness, and had no long term side effects but it didn’t seem to be doing anything. After I was tapered off I did notice it helped my light and sound sensitivity a fair amount, as a few weeks later those issues got MUCH worse. A few different times over the past 2 years I tried to get on Amitriptyline, started lower than 5 mg and got MUCH more dizzy, couldn’t tolerate it longer than 2 days. But, it seems like Amitriptyline or Nortriptyline (which I also tried, was worse than Ami for me), really reduce the dizziness the most for people.
Anyway, now I’m at a crossroads because my neurologist said to work with my psychiatrist to choose any SSRI or SNRI to try next. My psychiatrist chose Lexapro because it can be a migraine preventative, and is easier tolerated than a lot of the others. But, like you, I am not sure if it’s the right one and I don’t want to get to a point where I’m stuck on it for a few months and plateau with no further improvement. I guess at this point some improvement would be wonderful, but is it worth any potential side effects and/or withdraw effects if I need to switch? I don’t tolerate nausea well at all and can’t fathom at this point trying a medicine that has a higher chance than most of making me have nausea, at least at first. Also, I’ve had stomach sensitivity issues and, overall, have been eating the best I’ve been able to since the past year. A change in medicine messed my stomach up last February and it has taken it a full year to get back to “normal.” But I’m not normal, I have about half the appetite I used to (I lost 35 lbs in 2 years, 25 of which were over 3 months) and still cannot tolerate certain foods that I used to be able to eat. The last thing I need is a medicine that increases risks of heartburn and nausea.
If someone has an answer for these SSRIs and SNRIs out there I’d like to hear about it! My doctor also isn’t sure I have migraines at all anymore, maybe I did at one point, so she’s not sure if any of the other migraine preventatives will work (and I’ve tried at least one in every class anyway).
Hi there I am brand new to the forum but wanted to address your question since I have personal experience with it. I actually started on Effexor approx 6 months ago. I read Dr. Haines protocol for MAV and with nothing to lose (saw 4 specialists and no one could agree on a diagnosis)I asked my treating physician to start me on Effexor 37.5 mg. Within about 6 weeks I started to feel better (less nausea, better able to read,drive) and then I increased up to 75mg. Again, I saw significant improvement, but it did take several more weeks for this to occur. Overall I have had about 86-90 percent improvement which is fantastic as at my worst I had to stay with my parents for 5 weeks in early 2016 and have them help care for me (I’m in my mid 40s). I know that everyone responds differently but Effexor has significantly improved my symptoms- I am able to drive, work, shop etc with only mild symptoms… I hope this helps…
I was not specifically on Effexor, but I did take Citalopram when this first started (3+ years ago now for me) - I found that while it did not completely eliminate the dizziness, it did help take the edge off by reducing anxiety and improving my coping skills.
I stopped after about one year because I felt like the Citalopram was no longer helping. I tried the migraine diet and holistic approach for about a year and a half before I decided I needed to go back on medication. I’m now on Gabapentin which some days I feel like it is helping and others I don’t.
I’m not familiar with the doctors you’ve seen in Boston? I too moved here, mostly because the doctors in my hometown in the middle of nowhere Canada couldn’t seem to figure out why I was constantly dizzy. I’ve been seeing Dr. Priesol at MGH. Where do Rauch and Whitman practice? Are they any good?
I had that experience on Amitriptyline. I think most meds have a similar efficacy in this respect: they improve the symptoms but don’t always fully cover them up and some days are much worse than others. My theory on this is there is some kind of physical disturbance to the inner ear fluids that moves around and in some configurations its less upsetting than others.
But I’ve been lucky recently and started to feel much better (~1.5 years in, 9 months on Ami) so now the meds seem to fully control the dizziness … I may begin to titrate down if this continues for 6 months or so, but will take advice.
@Brooke thanks so much for your response! And I’m glad to hear that Effexor has helped you so well. I think my doctor chose Lexapro first as it’s generally easier to tolerate than Effexor and I’m extremely sensitive to medicines and have been having stomach issues and decreased appetite for the past year as it is without help from medication side effects. If I can tolerate the Lexapro but find it doesn’t work for the dizziness I may try Effexor in the future. Thanks for the feedback! I hope you continue to feel better. I know what it’s like to need help driving to places and caring for oneself. I don’t know what I’d do without the help of my husband and my mother. It’s so tough to lose independence.
Hello jess9 I have problems with my stomach called gastric stasis which means the food sits in the stomach going nowhere. It has been suggested by my neurologist that I take either domperidone or metroclopramide as this gets the stomach working which means we will feel hungry again. Like you I have a very small appetite and have lost 2 stone. It is all part of VM if you are effected badly. I also have an arrhythmia so am a little concerned about taking a medication that causes muscles to contract, the heart being a muscle too, so I liquidise a lot of my meals as liquid is easier to digest. I also became a vegetarian as animal protein is difficult too as well as plants that are fibrous like broccoli, celery and skins on fruit. I feel less uncomfortable as a result of doing those things. I also take vitamin C, all the B vitamins with D3, a probiotic, magnesium and calcium. I am on nortriptyline, verapamil for migraine and the arrhythmia and an immunosuppressant for inflammatory arthritis. All of the above have helped but I have a long way to go to get back to normal. Hope this helps you.
@Revolving Thanks for your reply. Thankfully my stomach issues aren’t nearly as bad as yours, those sound awful. I’m sorry to hear it! My stomach issues didn’t start until a doctor tried to taper me off of the Xanax I was on for the dizziness. To make it easier for withdraw symptoms he switched me to Librium, a long lasting benzo, but it’s not a vestibular suppressant like Xanax is and the dizziness got a lot worse. And, when I got to about 25% lower of a benzo dose I got horrible stomach pains and weird gnawing hunger that mimicked ulcer symptoms (GI doc treated me for an ulcer). I got an endoscopy about 6 weeks after the symptoms started as they persisted and an ulcer was suspected, only to find that everything looked normal except a little gastritis and there was even no evidence of heartburn. It’s taken about a year now for my stomach and ability to eat a slightly larger variety of foods to return. I think when they say the stomach “shrinks” when you don’t eat as much for awhile is very true, I seem to now have that. I don’t mind eating less but it’s frustrating to not be able to enjoy pastas with tomato based sauces or anything creamy, or even anything overly greasy. Many foods I used to eat can cause discomfort afterwards or heartburn. And I have a lot of trouble with many veggies too, obviously the acidic ones especially. But again,nothing like what you have, I’m sorry you have to go through it.
Lately I’ve had trouble with prescription Prilosec I am on as the manufacturer changed at my pharmacy. I was apparently sensitive to the same dose of medicine just different color/size/type of capsules (and probably ingredients in those capsules) But other than that I’m also on a probiotic and Vitamin D3 and a multi-vitamin.
One quick question, you mentioned your inflammatory arthritis. Do you think that is related to MAV at all? After about 5 years into my MAV (this past June) I developed “attacks” lasting 2 weeks or so of joint pain, flu like muscle aches, and intense full body drenching sweating. I’ve seen a rheumatologist and do have slightly elevated c-reactive protein levels during the attacks (am still waiting for the level results between attacks) but my sedimentation rate wasn’t elevated. He said the levels were nothing like his patients who have rheumatoid arthritis, but the levels are still above normal. He doesn’t know what it is yet and I have no idea how/why it started out of the blue. I’m 29 years old so not a common age for inflammation to start but not unheard of. Doesn’t seem related to MAV to me (unless inactivity is playing a role) but since you mentioned your inflammatory issues I thought I’d ask. Thanks!
Hello Jess 9 my stomach issues started when an endoscopy revealed gastritis. At the same time I developed night sweats, muscle pain and painful joints which were considered to be reactive arthritis which occurs when the body is overwhelmed by an infection of some sort so to answer your question, I am not sure if it is MAV that causes it but to my mind in your case a general inflammatory process as your C reactive protein is elevated and you have gastritis. Reactive arthritis is not destructive and subsides once the cause of the inflammation has been found and treated. Did they take a biopsy when you had your endoscopy? I was found to have helicobacter pylori which is present in most of us but can grow out of control when the health of the body is compromised by disease. I hope they find some answers for you soon. My stomach problems now are caused by MAV as the helicobacter pylori was treated and I was fine for a while.
@Revolving That’s so interesting that your inflammation started during the gastritis, sorry to hear that. My inflammatory episodes started 4 months later. But, yes they did several biopsies during my endoscopy and they all came back normal for any bacteria. I suspect the gastritis has gone away by now, I don’t entirely know what causes my occasional nausea. Perhaps some of the worry after a bad dizziness day, and certainly certain foods can trigger heartburn. My rheumatologist does think some of my nausea could be connected with my inflammation, as I do tend to get more nausea during the attacks. Thanks for sharing. I’m trying to get to the bottom of these inflammatory and sweating attacks as they are more bothersome than the dizziness. Probably just because the dizziness has me stuck at home which makes the inflammation pain and sweating more noticeable. Just a guess.
I don’t know if this will help you but since I was put on disease modifying anti rheumatic drugs my sweating episodes and joint pain have gone. I think there are several forms of inflammatory arthritis and they don’t all show up in a blood test but can be seen on ultrasound. I know just how tiring and annoying the symptoms are so I feel for you. It did take me 12 years to find a rheumatologist who knew all about these things, most of them do a blood test and if it comes back negative for rheumatoid factor they dismiss you. I was actually told this by one of them!!! I hope you get sorted soon.
@Revolving This helps a lot actually, thanks so much!! It seems like my rheumatologist wants to help me but I’m not sure what his next step will be. He’s only done blood tests for c-reactive protein & sed rate. I’m seeing an endocrinologist who is working on the sweating (he doesn’t see how both could be happening at once) & she has some additional blood tests she wants me to get done during my next episode. The rheumatologist wants to wait to see what those results are. I do wish he’d run an RH factor test though. Your experience is very good to be aware of. If you don’t mind me asking, what is the name of the medicine that made your sweating and joint pain episodes go away? Were they episodes or more daily? Was the joint pain in many joints or just one or a few? Thanks so much!
Hello Jess09 the medicine is called hydroxychloraquine 200 mg daily. I used to have night sweats every night for years and evening sweats most evenings too and this magic potion stopped it in its tracks. I had joint pain in my ankles, feet and hands daily but then I would get random pain in my ribs, shoulders, neck, knees and hips. I am now left with neck muscle pain as a result of VM but the rest has gone and I can get up in the morning and walk properly instead of on tiptoes as I used to. I hope this helps you because dealing with sweating and joint pain on top of VM is a nightmare.
@Revolving Thanks so much for this information!! You don’t happen to live in the mid-Atlantic region do you? It sounds like I could benefit from going to your rheumatologist. My baseline blood work between attacks didn’t produce a lower c reactive protein level than during the attacks. He’s really stuck on this rare genetic disorder and after getting results from endocrine tests for the sweating wants to put me on Colchicine, which could be used to prevent attacks. Honestly though the side effects from that medicine sound worse than the aches & pains. I really want the sweating gone, and I keep telling him this but he’s putting his blinders up saying he doesn’t know anything about the sweating causes. It’s frustrating. It seems like I’m going through another attack now and the sweating is so miserable. The attack sweating comes with clammy skin and chills and it’s much harder for me to cool down than the sweating I get between attacks. I’m sorry to hear your sweating was every day, I would go bonkers!!
Yes, all of this together is one awful nightmare. Back to this topic of SSRIs, I did try the Lexapro Saturday morning, just 1.25 mg. It made me tired for a few hours, then bad heartburn and nausea set in. I had trouble eating lunch, made the nausea worse, but by dinner I could eat a little more. Overnight right before I fell asleep I started to get sharp, painful electric shock like feelings in my arms, legs, hands, and feet. It turned into a pins and needles feeling and numbness and tingling. I fell asleep eventually after being initially freaked out as I’ve never experienced anything like that before. When I woke up it all came back, my hand was numb and felt like pins were all over it just using my hairbrush. My calves got so numb when I tried to walk. I was planning on trying a 2nd dose but got nauseated and then couldn’t eat and didn’t want to dare try it on an empty stomach. Since then my stomach hasn’t been the same, that night and the next few it felt like it did back when the doctors suspected the ulcer. I may give the Lexapro another try but I need to speak with my doctors first and perhaps develop a better plan for taking it. I’m good at avoiding heartburn triggers but i seem to be SUPER prone to it, and I don’t see how any SSRIs are a good idea right now.
Jess09 I am so sorry to read about all that, really horrible for you. I live in the UK so that is a bit too far for you to visit my helpful rheumatologist. I am no doctor but my understanding of the sweating is that it is the body’s response to reduce fever no matter how many degrees above normal the body temperature is. This is likely caused by persistent infection or inflammation. Have you taken your temperature when the sweating starts. My temperature only rose by 0.5 degrees but that was enough for my temperature control to kick in making me sweat in an attempt to get back to my normal.
The new medicine sounds horrendous and I think you need to contact the doc who prescribed it ASAP. What is it supposed to do, I have not heard of it?
I am here for you if I can help at all because I understand how difficult it is to cope with more than one disease.
@Revolving Thanks so much! Yes the UK is too far, unfortunately. I would NEVER make that plane ride with these ears and this motion sensitivity! It’s interesting that you mention it that about sweating, that was always my understanding of it too. Yes, I take my temperature frequently throughout the day during sweating attacks. If I have night sweats my temperature remains below normal. But during the first few days of an attack I usually get at least a 0.5 to 1 degree rise in temperature in the late afternoon and early evening, then my temperature drops again by later in the evening. I’ve told the doctors this, but they’re not concerned if my temperature never gets over 100 degrees F. They don’t even consider 1 degree above normal a “fever.” But from my perspective it’s a fever to me and my body! I have had my red and white blood cells checked multiple times during the attacks and they’ve always been normal, so infection doesn’t seem likely. Inflammation, however, seems like it’s happening. The day I got the blood drawn when I didn’t have sweating or (much) joint pain my c reactive protein was still around the same numbers that it was when I was sweating…so my rheumatologist isn’t seeing much from that.
Lexapro is a newer SSRI, anti-depressant. Somehow it’s supposed to help reduce the dizziness and can potentially be a migraine preventative, similar to Effexor except Lexapro only reacts with the Serotonin. Lexapro is also “supposed” to be easier on the stomach than Effexor, but I still had problems. I’ve stopped taking the medicine for now. My neurologist suggested I try a type of SSRI but she left it up to my psychiatrist to decide which one. I have appointments with the neuro tomorrow and the psychiatrist next Tues, so I will get their input.
Hello jess09 on the sweating thing my rheumatologist decided that even though my bloods were within the normal range she wanted to treat me because of my symptoms which indicated inflammation. She also performed ultrasound which showed destruction of the joints so that was enough for her to accept that hydroxychloroquine would help me and she was correct. It is very rare to find such a lateral thinking doctor so I know I was very lucky but it did take 10 years!!!
I take the antidepressant nortriptyline in a small dose because it is supposed to calm the brain and, therefore, help the dizziness etc so at least they are on the right track for you there but they need to find the right one that doesn’t cause horrid side effects. In the UK nortriptyline and amytriptyline seem to be the drugs of choice and they are very effective and tolerated quite well a lot of the time.
I wish you all the best with your appointments, I hope they get it right soon.
@Revolving I’m so glad your rheumatologist wanted to put you on something anyway despite having normal blood results. I think mine will too if all the endocrine/sweating tests come back normal. But I’m super, SUPER sensitive to meds and I am not sure if starting one is worth it, despite all the discomfort the sweating causes. Did you have any side effects with yours?
I have tried Nortriptyline twice and Amitriptyline 3 times and couldn’t tolerate them either. Both made me MUCH dizzier, especially the Nortriptyline. I only took 1/4 of a 10 mg tablet of the Amitryptyline. But, it looks like I may be trying it again, I will talk with my other doctor this weekend. 4th time’s the charm right?
Unfortunately my neurologist didn’t think those side effects I had from the Lexapro were bad at all and she said I couldn’t even be sure it was from the Lexapro. I’ve never had the pins and needles stuff in my life and haven’t had it since. To me that was definitely the Lexapro. I don’t believe in such a random coincidence like that.
Thank you, for me it’s finding a medicine my body can tolerate, then see if it actually helps the dizziness. I’m very frustrated right now as no medicine has been easy for me.
Hello Jess09. Funnily enough I tried to up the nortriptyline and boy did I have a reaction!!! I went from 15 to 20mg. I woke at midnight with the worst abdominal cramps I have ever had in my life, went to the bathroom and fainted on the loo. went back to bed spinning like a top and doubled up in pain. In the morning when I got up I was still in pain but I had to walk my dog so took 2 paracetamol and within 15 mins was able to go out. I didn’t eat breakfast and wasn’t hungry at lunch time but ate a small meal anyway. I am sticking at 10mg now which really helps me but obviously I can’t tolerate any more than that.
As far as the hydroxychloroquine is concerned I had no reaction. I am on the lowest dose possible and it has really helped take away the pain, inflammation and therefore the sweating. It is known as a drug without major side effects so if it is offered to you I would give it a try. I hope they help you soon.
I am brand new to the forum but wanted to address your question since I have personal experience with it. I actually started on Effexor approx 6 months ago. I read Dr. Haines protocol for MAV and with nothing to lose (saw 4 specialists and no one could agree on a diagnosis)I asked my treating physician to start me on Effexor 37.5 mg. Within about 6 weeks I started to feel better (less nausea, better able to read,drive) and then I increased up to 75mg. Again, I saw significant improvement, but it did take several more weeks for this to occur. Overall I have had about 86-90 percent improvement which is fantastic as at my worst I had to stay with my parents for 5 weeks in early 2016 and have them help care for me (I’m in my mid 40s). I know that everyone responds differently but Effexor has significantly improved my symptoms- I am able to drive, work, shop etc with only mild symptoms… I hope this helps…