Awake at 3:30 am in PAIN

I know sleep is a big part of getting well and staying healthy, not just with our migraines but in general. Despite going to sleep at a decent hour, here I sit now at 3;30, wide awake and waiting for my meds to kick in again so I can go back to bed. For many years I have dealt with occasional problems of peripheral neuropathy. Suddenly it has become a nightly visitor, walking me up like a demon one or more times each night. Oddly, I am fine when I got to bed, but after a free hours bam the beast arrives. I awaken with my hands and forearms feeling like they are on fire, stiff, swollen, hot to the touch and this horrible searing pain running through both hands, forearms and sometimes my feet too. It can be accompanied with the sensation of pins and needles, or a prickly tearing feeling, but mostly the SCREAMING hot pain. I don't know that it plays any part in this whole migraine problem, but the lack of sleep and extra pain it provides are certainly not helpful, that I know.

I saw my Pain Specialist yesterday and I have to say I am really ticked at him. He is always at least an hour behind schedule from the first patient on. That is disrespectful, but he does give every patent the time they need and I think he sees hospital patients before he arrives, so I try to give him the benefit of the doubt. He also helps me with my disability papers and has worked to find what pain meds work for my chronic pain problems. But yesterday was too much. He had a student doctor with him (that was fine) but Dr S was all cocky and had this attitude like he was showing off to this young Dr to be. I tried to explain that I was getting another migraine and it was making it hard for me to think and explain things and all the symptoms that would soon be arriving. Instead of being sympathetic, he went into a game of 21 questions which would be understandable in trying to comprehend my migraines, but he was all over the board with unrelated things too. Then making light of my answers, telling me things like, "you can't possibly feel that way," or "who on earth gave that diagnosis," or other snide remarks about my other doctors or me. I have not seen this side of him before and would have said something if it were not for my growing migraine. Also do to all the laws and drug problems these days my other docs rever him and want Dr S to oversee my medications. So that puts me in a position of entrapment with someone who is belittling me and my other good doctors.

On top of this, he wrote a bunch of new scripts for some meds I am not so sure I really want to take. I have not worried about this since returning home, knowing I have an appt with my new neurologist next week and hoping he will step in with the medication scripts. Or at least I am praying he will decided to take over that area. The neurologist seemed to have a sense of direction and see some problems others have not. But for now, here I sit at this hour, dealing with my demons that suddenly came to mind due to this problem. Well it is now 4:30 and the pain is finally simmered down. I have had my little pitty party and will try and go back to sleep. Hopefully all of you are getting a good night's rest and doing well. I do have to say, my migraines have been a little better recently.
Jerri

Sorry to hear that. I must have been in sympathy with you, as at that time I was up shovelling meds down myself and then failing to get back to sleep too!

Have you had B12 levels checked at all? Am thinking of the peripheral neuropathy here.

Hope you feel better by the time you read this.

Sorry to hear you were up late last night too, and like me, taking our meds. We could have chatted had we known. LOL..... Thanks for the suggestion about B12. I recently picked up some B6 and B12 sublingual supplements but had forgotten why. I am gonna give them a try since I realized half way through dinner tonight that my food had some pork seasoning in it, and I am very allergic to pork. Odd thing is, it causes PN symptoms and is the only thing I know that causes me to have them, so I usually stay FAR away from it.
Here is the oddity about my lack of sleep last night. While I did sleep in late, when I got up I felt pretty good and was rather productive, even went and got my Mom-in-law and took her out for a bit then went and saw my grandkids. I just never know how I am going to feel from one day to the next despite what care I take or what obstacles I have to jump. A bad night does not mean it will carry over to the next day, nor does a good nights sleep and being cautious about what I eat, or do insure I will have a good day. Go figures. I enjoy doing genealogy work and solving the problems that can come up in the research. In fact I am rather good at finding things most people over look. I wish I could figure out my own health issues as easily. I think someday it will all become clear but it sure is a kicker trying to get there right now and always coming up short. I just have to remember and hope others will too, that we can't give up. There is too much good to keep pushing for and success will mean such sweet rewards. Hang in there and hopefully we will both be able to get a good nights sleep tonight. Jerri

It's like I'm chatting to myself here! I am into genealogy too, and research. I also spend a lot of time trying to solve my migraine problems and failing! We'll get there in the end.

Well isn't that a coincidence? It never ceases to amaze me when such similarities come up. I did take the extra B6 and 12 last night at bedtime as well as another B product I keep forgetting is very helpful. It is a synthetic B1 made synthetic as they make it to be oil soluble so it has time to get into the cellular level and work. It is called Benfortiamine. My recent migraine problems have made me a bit forgetful. I have read the research on this product and it works extremely well for peripheral neuropathy problems. I have also used it and it is very good. So last night I was well armed and slept until 5 when I had to take a pee break, then right back to sleep again. Also had another productive day....yahoo. Do you have problems with daytime pain and numbness in your hands? I can not hold a book or telephone very long before I am either in pain, hand and fingers getting numb, or both. Not sure of your age but I am 58, and in my heart I feel 30ish, but my body often feels 80ish. I keep trying to do good things for my body so I stay healthy but it doesn't seem to be working. I am so confused.
So what family names are you working one. Maybe we are cousins? wishing you the best, Jerri

Sorry you guys are going through a bad patch - seems to have hit a lot of people the last 3 weeks.....

I wonder if the bad nights sleep was a result of the crap doctors meeting - ie your sub couscous knew it was wrong and since you were having an attack at the time you could not deal with it..... this has all got pent up and come out in your sleep - ie when you were relaxed.... I know I get so stressed when I have a crap doctors meeting (and I have had a few lol) you know they are talking crap and you know you have the answers but at time your brain is just not playing ball..... maybe just letting it all out on here may have helped - I hope so?

But I also think you are correct to wait and talk to your neuro - it will be interesting to see what he says...Can you change pain doctors?

Have the doctors that 'gets it' is soooooo important - I have had 4 neuros in my time - the first wanted me to go for psycho assessment!!!! pls - I remember my husband laughing at him and telling him I was the most sane person he had ever met lol for hubbies - and yes we sacked that doctor.

Take one step at a time

PS I have done our family tree also - was one of my therapy projects when I was trying to get my brain back after the last big one - its so interesting - back to 1400 on one line and linked to Jane Austin on another

The vitamin B1 sounds interesting. I hadn't heard of that form.

I do get a bit of numbness in two of my fingers in my right hand. I also started to get a bit of numbness in my right arm for a while, which scared me, but since I started the sublingual vitamin B12, that seems to have resolved itself.

That's scary about the neuros, Tee. I went to see one recently - what an absolute farce that was. He wasn't happy with me talking about having migraines until he'd personally diagnosed them. In the end I had to say that I was diagnosed with migraines over 25 years ago!

Interesting about Jane Austen! I haven't found anyone remotely famous on my family tree yet! I've been doing it for years now, so have more blocks than revelations anymore, but occasionally something shows up. It definitely helps hone your detective skills, doesn't it? No doubt we're all related if we go back far enough!

Oh how I want to sack this Dr but it is not so easy until I find someone willing to take over.prescribing pain meds for me. This crap doc has a very large group of admirers, including our local medical school and not only the state of Virginia but also the US Gov. You see he is the guru of medications, or so they all believe. He counsels our government on medication chemical makeup and combinations. He counsels with our military on the best meds for various problems our injured soldiers endure. I have been in his office when he has gotten a call from delegations on various things including midwifery which had been banded but he said to allow it but have them get liscenced as they are going to practice anyway, and that is the law now. None of my other docs want to disagree with him or talk down about him. In the meantime I am one of his guinea pigs and possible unknowingly in medication trails and clinical studies as far as I know. It seems just when things are going well he determines a reason to change things; a better product, sudden out of stock on previous med, he finds a new angle he feels he needs to treat. I know my medical history and problems are complicated and certainly I am not a doctor but I don't feel he is playing fair with me. Several of my doctors have told me I have electrolyte, Vit D, and some other similar issues. Not one but two or three have all suggested certain supplements which I was taking. The crap Doc made a big deal telling that is just a bunch of bull. I know that certain supplements are frequently used on animals with good results. The animals don't know what they are getting to react to them in positive or negative ways. The last 15 to 20 years of my life have been a roller coaster ride of these migraine episodes sandwiched between periods of recovery which was always very slow because we did not know what we were dealing with. Then I would have a good spell, just get rolling and BAM with something else, my back issues, gastroparesis, hypothroidism, issues with muscle spasms, arthritis, allergies to pork and dairyy that produce symptoms of extreme joint pain like gout, extreme high blood pressure despite excellent diet and water jogging a mile 4 days a week. I can no longer wear normal shoes much less the cute girls kind. Since surgical induced menopause began 15 or so years ago my weight soared and i just can't get it back down. I don't sit and dwell on it, but honestly when I wake up in the morning I never know what hat I am going to be wearing symptom wise. Thankfully God gives me a few good days in there so I can maintain my sanity. I just keep searching for direction and answers and hope I can get a handle on all this and have a little quality time before I am so old it does not matter. Honestly, I am a pretty happy person, industrious, and have more things I have talents and desire to do mich more than many. Why and how come this is all happening remains a mystery. But I have decided I don't have time to keep playing around with bad doctors for the one life I have been given.

Tee you bring up a good point, but the reason I was awake was for the peripheral neuropathy which was worse than usual. Because of my slow digestion problems my meds take a while to start working. But certainly once I got to thinking about the doctor mess either while I was sleeping or awake, it did not help me being able to relax and get back to sleep.

My hubby is so thrilled that my GP put me on some antibiotics this week for a UTI I finally realized was festering. Since the antibiotics I have obviously am feeling better. I am not having headaches like before, my energy is coming back, I can think and speak more clearly and walk straight too. Not only that but the house is clean again. How the infection relates or originated is of question, but due to my improvement all this needs to be addressed. But not with Dr Crap.

Sorry for my lengthy mssgs, I can't seem to write like normal folks.

Big hugs to you both for caring and sharing.

Jerri

I know what you mean about doctors... I certainly believe they have their place, but at the same time, I personally don't think throwing drugs at chronic illnesses/diseases gets anywhere near the cause (and I've certainly never had any improvement with anything I've been prescribed).

Funny you should say about antibiotics, as I remember years ago thinking that whenever I was on antibiotics my migraines were better! It's something I've never got to grips with, and antibiotics certainly don't help me in other ways, but it's a bit odd to be a coincedence...

Oh Whatgoes - you really are a trooper - all this and you can still smile

I do hope your neruo is more understanding this week.

The antibiotics link is interesting, I have not had any for years - so cannot stay - wonder if anyone else has found this........

Thanks so much Tee and Sarah for all your comments. After a truly wonderful day of feeling NORMAL for several days in a row, suddenly this evening I could feel it all coming back again. Not just that i am on the verge of another migraine but that my joints all hurt again and I could hardly stay awake after dinner. It is a very odd kind of sleepiness, that when I sometimes blink I just fall to sleep for a few minutes. My body feels drugged and like I was chewed up and spit out. Having seen such a positive reaction for a good 5 days after starting the antibiotics I am wondering if they just are not strong enough to conquer what ever is going on here. I am heading to bed to get a good nights sleep and hope I am up to taking my younger brother shopping as promised tomorrow, even if just for a little while. Traci is mentally challenged, our perpetual child, that my hubby and i are legal guardians for. He lives in a beautiful and loving group home a short distance from us. My current roller coaster ride of migraines and other illnesses hit me just two weeks before Traci's 50th b-day and big party we had planned but I could no longer pull off. He has been put on hold a number of times now, though he spends every other weekend or more with us. If not for my shopping promise I feel like just throwing myself on the doormat of the Emergency Room and surrendering to them. I really feel that yucky right now.
Maybe Tinkerbell will come and sprinkle pixie dust on me during the night and make it all better. I am really trying to stay positive but honestly I don't understand this and am really ready to be done with it now. Of course I will keep you posted and keep smiling.

Jerri

I do hope old Tinker paid you a visit last night - take it slow today though, I know a promise is a promise - but you have to think of you right now.

Thanks for the big hug. I am not sure it was Tinker who visited but I got a good sprinkling of sleep dust. I woke up feeling well enough to avoid throwing myself on the doormat of the E,erg envy Room but got an appt to see my GP. Poor man, kind as hemis, he must grimace when ever he sees my name on the list. He is as puzzled as ever but recognizes this is not the first timer this sort of thing has hpened. I pointed out that he had concluded that on own and yet it has been happening for many years. I told him it just feels like there is something more that we Re missing. Also how tired I am of just being sick all the time.

Traci and a run to Walmart and picked out a few thing, new electric / rechargeable shaver and toiletries, pair of new pajamas, etc., but the most important thing a new released video. He absolutely loves his DVD collection which is nothing to be laughed. Trying to take care me now. Dr called in a different antibiotic script so hoping it woks. Things will turn around just hope the whole headache pattern starts up again. Jerri

l.
So sleepy herrvgcv

Mart

Glad you made it out -do let us know if the new antibiotics help?

Tee x

I have a peripheral sensory neuropathy as well. The docs have never been able to agree on a reason for it. It is not a result of diabetes, a vitamin deficiency, heavy metal exposure, a genetic disorder or any number of other things the neurologist tested for. SO the neurologist blamed the Vincristine I was given in 1992 for Non-Hodgkin's Lymphoma. However the neuropathy showed up 8 years later and the oncologist said that nerve damage from that drug would not show up that many years later. He thinks the neuropathy must be the result of something else.

But this makes me curious if neuropathy and migraine are correlated in any way. Is it common for migraine and neuropathy to be co-existing conditions?

Whatgoes - I do hope you are feeling better.

Waking up in cycles at night time is perfectly normal with these types of problems. As someone has already mentioned, 'the similarities are scary!'

No they're not, they're founded in science!!

We do not sleep in a linear pattern, we float down and cycle through 4 different levels of sleep and in one particular level (or phase II sleep) we are more prone to triggering a migraine. Phase II sleep intensifies at about 2 in the morning and then around 5:30 in the morning. Most people will wake up in about 45 minutes of these cycles kicking in.

Hope you get some better luck with your doc!

Ok, I'm not a doctor but all this is ringing bells (no I don't have tinnitus). When I'm going through prolonged aura (7mths of it last year) I frequently wake with numbness in my arms and have persistent tingling in arms legs and sometimes down my side. No pain though.

When they were trying to figure out what was wrong with me last year I had every blood test under the sun from Lymes to LEMS etc etc. I was found to have a raised ESR but this can indicate any number of things including autoimmune diseases.

My thinking is that taking antibiotics reduces infection and, therefore, reduces the white blood cells that do the disease fighting. If there are fewer white blood cells then maybe there will be less of an autoimmune response too - for a while.

I too have recently taken antibiotics for an infection under my fingernail and felt awesome for a couple of weeks and am now far from awesome!! I may be talking out of my rear end with all this and I welcome a Doc telling me so but has anyone investigated the possibility of migraines being autoimmune in some way? This certainly fits with many causes of peripheral neuropathy.

Big hugs to all and I hope we all start feeling better soon?!

Oh that interesting - there is another thread on this too... I was talking to a doctor a few weeks ago and he mentioned a condition called HandEL - which is an infection which can cause migraine aura like symptoms - have you ever heard of it or had the test?

https://migrainetalk.forumotion.co.uk/t618-anyone-ever-heard-of-this-handl-transient-headache-and-neurologic-deficits-with-cerebrospinal-fluid-lymphocytosis

You wake with numbness due to the muscular pathology which occurs whilst you sleep. I often treat people for neck and shoulder pain, numbness in the arms etc can be treated but tends to be more difficult due to the pathology pathway

Anyone get pain BEHIND their eyes when they wake? Or how about neck/shoulder pain? Many people often also report sinusitis. This tends not to be genuine, recurrent sinusitis rather the same blood vessel dialation which occurs in the brain during a migraine attack can also occur in the sinuses. It's effectively a migraine!

I have morning migraines. I have Fibromyalgia.
I didnt have migraines before the fibro.
I dont appear to have triggers for them, other than sleep.
I believe they are a symptom of my fibromyalgia.