@Revolving Hi Margaret. So sorry to hear about your Nortriptyline reaction while trying to increase it. That is super scary. You are so brave, I’m not sure I would have continued the medicine at all after that.
Good to know about the hydroxychloroquine. I don’t know what my doctors will end up doing on that front. It seems like I had one of the usual “attacks,” these past 2 weeks. It came with all the usual symptoms except no muscle aches or joint pains. I usually get a sore throat in addition to the attacks, but this one was a NASTY sore throat. It’s been 2 weeks and I still have it at times, mainly at night and early morning now, but it was constant a good week and a half. My tonsils were super inflamed and red. I went to my PCP but she just said it was tonsillitis. I never got any other symptoms of a cold or fever/flu anything. I am wondering if the inflammation presented itself in the sore throat this time instead of joint pain…is that even possible?
I didn’t respond for a few days because I saw my other doctor, the psychiatrist, on Tuesday and was pretty upset with what he said. He’s always supported me and seems to know that I am very sensitive to medicines and has understood that, starting me at super low doses. This time though, after I explained what happened on the Lexapro, he said that I was “expecting” side effects. I did know that most SSRIs can have stomach effects, but I’ve been on Prozac and just had minor nausea the first few days and felt nothing on Zoloft so I wasn’t overly worried about it. Also, as far as the pins and needles feeling goes I WASN’T expecting that or anything like it to happen, especially by the time I got to bed since I took the med in the morning. I didn’t even know that was a side effect, and was so calm I was literally almost asleep when the sensation started. So I just don’t believe I could have been expecting that.
So now I’m a bit torn as to whether I should even try meds again for awhile or try to go a holistic route and see a naturopathic doctor or something. My psychiatrist thinks I should try the Lexapro again at a later time. He didn’t even consider what I went through on it to be major or related to the Lexapro. It makes me want to scream. He suggested I try a “light box” (one of those things that mimics sunlight used for seasonal affective disorder) He says it will give the effects of an anti-depressant (that can also reduce anxiety) but without the GI side effects. See, there he was contradictory and acknowledged the GI side effects (so frustrating!). And I don’t think he understands the effects I need from the anti-depressants for the dizziness and migraines. It’s not going to be what I would get from a light box. Plus, I’ve been super sensitive to light lately and I feel like the last thing I need is to sit at such a bright light. Ugggh!!! Nothing is easy about this condition at all.
I am so sorry to read all of that. I wonder if your pins and needles feeling is what I call an electric shock type feeling that becomes quite painful? It happens to me on going to sleep and on waking up. It started as a warm feeling in my chest and now spreads all over my body. It is difficult to describe. It has nothing to do with meds for me because it started before I took any so I just wonder if it is something to do with VM itself? I have got used to it but I was scared at first as it feels so wrong.
I cannot for the life of me think why a light box would help when we are all so troubled by bright light. Sometimes I think doctors really don’t understand our disease but want to help anyway.
As for the sore throat, if it is tonsillitis you would have white spots as well as a red throat, I know because I got it a lot as a child. If there are no white spots then it is not tonsillitis and as the tonsils are part of the immune system they are probably doing their job and trying to fight an infection of some sort or another. It could all be part of the joint pain scenario, your immune system is too active like mine.
I do hope something works for you very soon. Just hang on in there and try small doses of the meds and stay on the small dose for at least 3 weeks to see how you get on. If you are ok try upping the dose a little for another 3 weeks and so on. That is how I coped and also how I knew when I had gone past my tolerable dose.
Take care and stay strong. It is such a difficult journey we are on but we can get there so don’t lose heart.
@Revolving Thanks so much for all your care and concern!! I also described the pins and needles feeling like an “electric shock” sensation all over my legs, arms, feet, and hands. It only happened the one night I took the Lexapro though. Never happened to me before or after. See, my problem is I can barely handle the meds for 1 to 2 days, let alone a low dose for 3 weeks. We all already go through so much, just adding something more is too unbearable for me. I am pretty much sofa and apartment bound though, so I know I have it worse than most people on here (maybe not you and a few others). And for the most part I don’t experience a lot of nausea with the VM (more with the joint ache attacks) so when a med makes me nauseated it’s like taking away the one enjoyable thing I have left in my life, food.
Yeah this psychiatrist doesn’t know much of anything about the migraine condition, he’s just trying to go by the fact that my neurologist wants me on an anti-depressant. I hate to not try it since I already have trouble with so much of what he suggests, but I see it as being really silly and just adding fuel to the fire.
My throat didn’t have the white dots but a few days after I went to the doctor small, pinhead sized white dots did appear for awhile. But you’re right, something is going on with my immune system too. Generally during these attacks I’ve gotten my red and white blood cell counts checked and there’s no sign of infection. This time I didn’t because I wasn’t achy. Who knows.
Have you ever seen a homeopath? If you cannot tolerate even small doses of antidepressants maybe you would be better with homeopathic medicine. I tried it for period pains years ago because I used to faint they were so bad and the homeopath cured me in a week. He gave me 3 different potions which made me cry non stop for a week, even in my sleep, but they worked and I never ever had pains again. It might be worth a try for your situation now. They are generally very caring people and the first appointment takes an hour so they can get to know you and all of your symptoms, stresses and past. If you are honest with them they can match you to the right treatment because they treat the whole person as apposed to just the disease. As you are having such a bad time with meds it may help get your body back in balance. Just a thought which I hope may be helpful.
@Revolving I’ve never seen a homeopath, but I’ve been thinking about it a lot, especially lately. I actually know a great one through my mom that I interviewed in college for a project when I took a Complimentary & Alternative Medicine course, and he’s local. We’re very tight for money now so I hesitate on that end because not only will his evaluation be expensive but all the supplements and such as well. But if it gets me better it would be worth it. I’m also hesitating because I’m 99% sure he’d want to change my diet around. It took me a year to be able to eat sort back to normal after having to eat bland for so long…trying new things or adding more veggies alone may send my stomach into revolt again. But nothing is working and I am in a horrible state right now, so I need to do something to change. And meds may not be the answer for now.
I can’t imagine the “potions” you got making you cry non stop. How could they have that effect? Glad that it helped the pain at least.
I am glad you know a good homeopath and he is local, brilliant me thinks. As for the diet he may not need you to change that so don’t let that put you off.
When I went back to the homeopath I said “I am really cross with you because you made me cry nonstop, even in my sleep”. He smiled and said that is exactly what needed to happen because I have always been too strong for my own good and the stress had to come out somewhere which was why I was in pain. I don’t care how it works but if it does that is brilliant.
I know they are expensive, about £40 for the initial hour long consultation, but this includes the potions, they are not expensive but the expertise is what you pay for. If you can manage that I would go as he may be able to turn your life around. Also you may not need lots of consultations and each one lasts less and less time so is less expensive. I hope that helps.
Jess…The Pins and needles feeling from sleep is something I have sufferd from and is not i think drug related. What is actually happening is that you are having a migraine and vertigo attack while you are sleeping - this sends your brain into a kind of vertigo shock …your brain takes time to adjust waking from a deep sleep so suddenly …and your normal body functions take an impact from this with the nausea and pins and needles feeling all over your body.
I have now been officially diagnosed with MAV and my consultant is going to pass on this weird symptom (vertigo sleep shock) to his colleagues so that they are aware of it and can recognise it as part of MAV so will stop wasting time looking into possible causes of this weird symptom.
Propranalol has for me stopped these nightly attacks and I feel like i have got my life back (touch wood).
This is a horrible and silent condition which is hard for others to appreciate how this affects our daily existence.
I hope that by sharing our experiences around the world we can inform and get consultants giving a higher standard of all round care on this horrible affliction…paul
Thank you for that. I have suffered on a daily basis for 11 years with the electric shock all over my body when I wake up and noone has been able to explain it to me. It happens during the day too if I fall asleep. It has become more and more painful over time as well. I did suggest to my GP that I felt as if my body was sleeping too deeply and struggling to wake up. I have only been taking nortriptyline since the end of last year so I know it is nothing to do with medication. Your theory makes sense so I will mention that to my GP f you don’t mind.
yeah no problem…the more we can get experience out to all doctors the quicker they can get help to you guys n gals…have u tried propranalol…its a beta blocker which helps migraine too…like all drugs watch for any side effects and do not stop taking them without coming off slowly…lessen the dose each day
I have supraventricular tachyarrythmia so they tried me on a beta blocker but it turned me into a zombie, I just sat all day unable to function so I am on verapamil instead which also prevents migraine headaches but does nothing for the electrical feelings.
the tachychardia is another symptom of MAV and this sleep shock problem…it plays havock with your heart rate and blood pressure…since ive started taking it my herat has balanced around the 60 beats per min and my blood pressure near normal…whatever medicine works best for you…I was on other beta blockers for my heart with no effect on my MAV …but whatever is in propranalol seems to curb it so it works for me.
Thank you Paulus I will certainly discuss propranolol with the GP on Friday. Maybe the one I tried before just wasn’t right for me but the GP at the time didn’t offer me an alternative. Thank you so much for your input. I always thought my arrhythmia was due to MAV, as is the gastric stasis but none of the docs have joined the dots so don’t believe me. Nothing new there!!
I find your symptoms so interesting because I’ve had an arrhythmia and gastric issues that started around the time of my VM diagnosis. So strange these symptoms we are all experiencing!
We need rewiring!!! That is what I tell my friends anyway but it makes sense if the electrical circuit in the brain has gone haywire it will affect all the other electrical circuits, the heart and stomach.
@Revolving I have chickened out with the homeopath for now at least. I forget the exact price but the initial consult is between $200 and $300 here depending on how much time he spends (and I know my visit will be the maximum time). But my decision wasn’t based on price, I realized that I could be just as sensitive to any homeopathic remedy and right now I’m having trouble gaining the nerve to try supplements like magnesium or CoQ10. And homeopathy, treating “like with like” may not be what I need. I wonder how they treat MAV dizziness?? We all get such different sensations and kinds of dizziness, if their “potions” are off just a bit with the type of dizziness I imagine it could be just as bad as any medication side effect.
@Paulus I only got the pins and needles feeling that one time, the night after I took Lexapro. Haven’t tried Lexapro again and the feeling never came back. Also, I hadn’t fallen asleep it happened while I was trying to fall asleep. I am supposed to try Lexapro again though so I shall see. Also, that night of the pins and needles I was also not as dizzy as I can get and had no headache. Seemed to be the dizziness I experience between “worse” attacks.
Jess, I stand corrected, but I think homeopathy treats individual symptoms rather than a whole ‘illness’ like MAV. There are certain homeopathic meds that I use successfully for other ailments, but tried OTC medicating years ago for ‘tinnitus and dizziness’ when I was still riding the Meniere’s beast - with no effect.
I tend not to get dizziness waking violently from sleep but have had two bad migraine pains when this happens so its all connected i think…it sends your brain potty and an electrical charge is sent to every corner of ur body making you ill…quite a weird feeling
@Paulus Wow that sounds horrible. Thankfully I don’t seem to get anything like that, at least not yet. This beast is forever evolving and changing with me.