So I haven’t been on the boards in a while because I have spent 8 days in the hospital and the past week at home recuperating. I have been told I have MAV from a specialist at Johns Hopkins and have spent the past 2+ yrs trialing meds to get rid of it but now i’m not so sure that’s what I have. The cardiologists I’ve been seeing have diagnosed me with POTS (Postural Orthostatic Tachycardia Syndrome). Unlike MAV, there is a definite test to measure whether you have it. They measure your blood pressure & heart rate lying, sitting and standing. If your standing heart rate increases by more than 30 beats a minute than you have POTS. The symptoms of POTS and MAV overlap tremendously. The neurologist who diagnosed me with MAV could never explain my heart palpitations and chest pain. Every single migraine preventative I tried kept messing with my heart and he could never explain why.
So I just wanted to bring awareness to this poorly understood and frequently misdiagnosed disorder. Alot of people develop it after childbirth which is when I developed it. Others get it after a viral or bacterial infection. Some of the symptoms are: dizzyness, lightheadedness, shortness of breath, blurry vision, migraines, tingling in the legs, sweating, reactive hypoglycemia, flu like symptoms, fatigue and most POTS patients are highly drug sensitive. There are other symptoms but these are some of the most common. If you tend to have a fast heart rate like I do or feel better when sitting down, you should definitely look into this condition. There are many good websites with info on this syndrome and the treatment for POTS can be different than for MAV. Just wanted to help anyone who might be like me. I think I may finally be on the right track to getting my life back. Alot of neurologists and cardiologists have never even heard of POTS. For more info google POTS or check out a website like dinet.org/.
Hi Dizzygrl,
So sorry about your ordeal. Thank you so much for posting this info as you are right that POTS does overlap with many of the symptoms of MAV. I really hope you get down to figuring out what is exactly causing your symptoms.
I am very curious as to what the doctors recommended as treatment for POTS???
Thank you for the information regarding POTS. I didn’t know that it was an MAV mimic. It is always good to know what mimics exist, it helps when trying to figure out if a doctor is totally shooting at the wrong ducks, so that you can find a doc that is hunting for the ducks that are causing you the problems.
Wow! This is interesting… I also have major palpitations that didn’t start till about the same time as the ‘MAV’ - I will be looking into this!
Thank you so much!
dizzychick - I just read your story, and am sorry that you are battling this illness. I’ve had it since June 07, everyday, and it is truly dreadful. I am also housebound. i am pregnant now, and due in Feb, and will be retrialling meds then. my doc would like me to take nortriptyline,and you wrote that you are on it as well. Just wondering what your doc’s target dose is for you. I took it in the past. however, stopped it much too early (only on 20mg). i am aware that I was not on a thearpeutic dose at that time. lots of luck. please keep us posted. I wonder what your docs thoughts regarding POTS.
Hi
My neurologist told me to keep increasing by 10 mg a month. (Up to 70!!) I am on 30 - I can’t take anymore than that or I get really bad palpitations. I haven’t spoken to my GP regarding POTS yet - that was the other lady lol. I will speak to my GP next week though. She is not really willing to hear anything - She isn’t thrilled that I self referred to the neurologist! She thinks that MAV is a myth and that it is all panic attacks. Annoying. I am considering changing GPs. Just the thought of starting from scratch with another GP puts me off. Having said that, there is a new GP surgery being built closer to my home and apparently there will be alternative therapies available there on the NHS as well. Interesting!
I can’t imagine being pregnant and having to deal with this! I feel for you! Hopefully 2010 will be better for us all !
dizzychick - I am sorry to hear about the heart palpitations. what does you neurologist say about that? Are you seeing Dr. Surenthiran? Is 70mg your target dose or the dose when you are supposed to BEGIN seeing improvements. My doctor said that I should begin to see some progress on Nort at 50 or 60mg. I also am saddened to hear about your situation with your GP. From my experience, GPs have no knowledge of this disorder. yes, preg is difficult because the hormonal change just exacerbated my sxs, but the preg itself is easy to get through, as it is nothing compared to the daily suffering that we deal with because of the MAV.
To be honest with you I mentioned it to Dr.Surenthiran (the palpitations) and he suggested that I take 30mg one day and 40 the next on and off for the next few weeks to see how it goes. That was in November. I can’t see him again till March. 70mg is the max… well he told me not to go over 70mg. My GP FINALLY sent me to the hospital to have a recording device strapped to me to see if they can determine the cause of the heart issues… Just my luck, that day I had NOT one flutter or palpitation! :roll: So, of course she said it was stress. Last week I got an emergency appointment with her and she did an EKG? and picked up on something and now wants to send me to a sleep clinic…? My dad has sleep apnea, but I have no idea if it is hereditary or not. Dr. Surenthiran also mentioned that I breathed wrong and sent me to a respiratory therapist. Saw her once and not heard anything about another appointment. (the appts are mailed)
My dizziness is 24-7 but I don’t have any migraines other than 4-5 days before my period, then I can hardly walk. Dr Surrenthiran sent me to be tested for PCOS - which came back ok (says my GP)
Are you in the UK? Do you see Dr Surrenthiran as well? Just wondering if there are any others that see him on this forum…
He is really nice & good at what he does… I think I am just a medical mystery LOL - He has his work cut out for him with me! :lol:
dizzychick - sorry for all the confusion with your dx. I live in US, but I heard of Dr. S. is he convinced it’s MAV? I know many with MAV get worse before their period. I actually have PCOS. To my knowledge, the only way to truly rule it out is by getting an ultrasound. This disorder is certainly hormonally related, but none of my docs felt like treating PCOS would help it. who knows? good luck with figuring things out and keep us posted.
Yes, he seems to think it is MAV.(ultrasound was clear for PCOS) Apparently he will change my pills next visit. I have a friend in the US ( I am originally from SC, but been in the UK for years) that had MAV for about 3 months! Lucky girl…she saw a doctor in SC and they gave her Effexor and she is sorted… I have been thinking seriously about going home for a few months to see what I can do - the thought of flying with this scares me though! + I have heard some nasty things about Effexor.
I forgot to mention that my friends situation is a bit different -her doctor mentioned that PTLS mimics Mav as well… She had her tubes tied… so have I ! She is having it reversed soon - If I knew that was what was the cause of my issues I woud too ! Apparently 90% are symptom free after having the reversal ! Hormones are odd !
All I can say is that I have seen a very good neurologist at Johns Hopkins & he should have known about POTS but obviously didn’t catch it. My fast heart rate & palpitations should have been a clue. My cardiologist did not catch it either until I was an inpatient in the hospital and was being monitored 24/7. Unfortunately, I had every test under the sun and none of them led the drs to this diagnosis. It seems that an EP cardiologist is the best one to make the diagnosis in case any of you are interested in getting checked for this.
The prognosis for POTS is similiar to MAV in that there’s no cure just meds to help deal with the symptoms. Also over time it may just go away. Another similiarity is that it so hard to find a dr that is knowledgeable about it. Most have never heard of it. It is also poorly understood like MAV and it is trial & error with the meds. Uuuggghhh!! I was hoping there would be a simple answer but no. MAVNY–there are lots of different meds to try. Right now I’m trying florinef & midodrine and increased salt & fluids. The jury is still out on whether any of it is working.
As far as nortriptyline, I saw good results on 20 mg. At least an 80% resolution of my symptoms.
Here’s hoping to better health for all of us in 2010!
I actually was thinking the exact same thing as MavLisa. What do the doctors make of the fact that you do respond to migraine preventives (even though you get side effects and have to stop) and from my recollection you were diagnosed with PVC’s? Could you have both?
The doctors found it interesting that I responded to nort in the past. SSRI’s/SRNI’s are among the drugs used to treat POTS so maybe the nort had some effect that was similiar. But I never got back to 100% on nort and maybe that was why?? I’m still not sure myself. Could I have both conditions? I guess it’s possible but the doctors seem to think that my POTS was triggering my chronic migraine pattern. They think that if my POTS is controlled the other symptoms will subside as well. Like I said before, the symptoms are VERY similiar and I definitely saw for myself in the hospital that I have POTS. So I guess time will tell. This diagnosis might explain why some MAV meds had absolutely no effect or made me even worse. The doctors also agreed that I could try nort again at some point in the future if I don’t find relief with their current treatment. I will try to update this board again at some point to let you know how my treatment is going.
