TIngling in arems and legs

hi all,

after fainting several times today, i had some tingling in my arms and legs. I am not sure if it due to the fainting or migraine or both. Has anyone else had this with migraine?

Pain free days,
sconesail

I have no idea, Scone, I am sorry, but I would report this to my dr immediately. Seems like a new symptom,
like something is progressing, sorry to say :[

Risa

Not with migraine per se, but I've have that with a pinched nerve caused by a bulging disk. It could be you are getting some damage with all the fainting.

Hi All,

Last night, it got really bad. After I had fainted several times, the numbness and tingling in the arms and legs came back- at one point it felt like my feet and arms were on fire. I ended up calling the on-call dr in my internist's group. He basically said-"try some klonopin, go to bed, and call us tomorrow." He did say if it got worse he would send me to the ER. However, by that time I was tired, had no clue what the ER could do and so I took his advice and went to bed.

I just spoke with my neuro's office as well- mainly due to the corelation with the fainting. My dr isn't in yet, but they will call me as soon as they can get in touch with him. I will also check with my internist.

I don't know what else to do. It is clear that something is happening-but I have no clue what. I am not diabetic or anything like that. I am just wondering if it some kind of nerve problem or maybe it is another clue in this crazy fainting neurological thing. or maybe there has been damage from constant fainting.

I will let you know what happens.

Pain free days,
sconesail

You know what, since nobody seem to be taking you too seriously, perhaps start calling ER is not such a bad idea?
maybe at ER they would at least have done an MRI or something?

Risa

I'm with Risa. Something major is happening, and the increasing fainting spells and other symptoms need to be checked out ASAP. If you were my patient and in a hospital setting, I'd be calling a rapid response (emergency team that handles things so they don't become a major incident).

Please, contact someone and if it were me, I'd be going to the ED.

Please keep us in the loop about what's going on, and know we're thinking of you and shaking the voodoo chickens for you.

Hi All,

Thanks so much for your replies.

I definitely agree that something is happening. My neuro has not called back-though his office suggested the ER. I am avoiding that for as long as possible for several reasons. I hate the ER. I hate the waiting. I hate having to explain what medications help- depakan, benedryl, fluids. I have also found that when I have been to the ER for fainting or anything related to it, I usually wind up getting iv fluids, blood work and no answers. If I have to go and this problem is still bad tomorrow, I will go.

I was thinking about any possible causes though. I realized that I started taking the long acting ultram last week and was wondering if this could be a side effect. I looked it up and it was. I called my pharmacist to confirm and he said that about 10% of people who took it had some sort of muso-skeletal weakness or tingling and that was what I was describing. This is strange since it did not happen on the short acting version- but he did say the increases dose could cause it. So, he suggested I stop the long acting form for a day or two and this would give us the answer. I will also call my pain dr and see what he says. But, if it is the the Ultram ER- it would be easy to fix.

So the plan is this:
I will call my pain dr and ask about it.
I'll try sticking to short acting ultram for a few dayys
and if nothing improves, I will go to er or urgent care,

I will keep you posted

Pain free days,
sconesail

Good investigative work! Thank you for updating us. Your action plan sounds very well thought out, and reasonable. I hope swapping the Ultram solves the tingling!

Hi All,

Unfortunately, the tingling and burning sensations in my arms and legs haven't stopped. I have also been caught in the game of pass the patient.

Here is basic rundown and results of the game so far:
GP's partner- Take an extra klonopin, go to bed and give Dr. P (my GP) a call tomorrow.
GP- call the neurologist.
Neuro's office- on Wed. "Ok, we will have the dr loook at it as soon as he gets in."
Thursay: "No, he still hasn't read your chart, he will call or go to the ER.
Thusday evening- No, the neuro doesn't take call.
Friday- "We promised to have him read the chart. Just be patient. or go to ER.
Pain dr- call the neuro.
Gp's office yesterday- "Come in at 10 am Monday."

I also spoke with my roommate's cousin who happens to be a neurologist at the University Hospital about 90 miles away. He worked with my old neuro. I was trying to figure out if the Er would help at all. He suggested I wait, get in with the GP, or local neuro. He said all they could really do at the er in this situation was a neuro exam and possible CT. He also suggested that I coould have sustained nerve damage from the fact that I constantly fall on my knees and elbows. Finally, spoke with mom and she sgreed.

I am glad that my GP will see me. If nothing, else, he does have the power to call and yell at the neuro about this.

As to the ER- I am not sure what they would do. I am not even sure they would believe me. I am sure they would do fluids, possibly depakan,, a CT and tell me to follow up with my neuro later. In addition, I do not feel like I can deal with thee whole ER thing and I hate the fact that so many drs have taken this so lightly or brushed it off for so long and I think another response like that would send me over the edge. If I though they could help, I would go. But I am not sure anymore. Maybe I have been brushed aside one too many times in the last few months.

So here is the current plan- I don't have anything I have to do today. I may see if my roommate wants to take a walk or a drive out to the Waters ( a beautiful planned community near here.) I am going to stay down as much as possible- maybe resting will give my nerves a chance to recover from the constant trauma of falling down.

Tomorrow is Easter Sunday. I will go to church and, if I feel unsteady, they can bring communion to me. (This is done for people who cant walk up to the rail. I hate the fact that during this time of celebration, of new life, of resurrection, I feel so horrible. I guess I will just have to remind myself of what my pre-school sunday school teacher says: "This is the day the Lord had made- and by George- I WILL rejoice and be glad in it."

I welcome any advice.

Pain free days,
sconesail

How long have you been off the long acting Ultram?
It could take a week or so to get out of your system.

Your plan to take it easy sounds like a good one.
Getting stuck with a non responsive nuero is very frustrating.
Will they give you an appt? Trying to get a phone consultation is difficult.
They can't bill for that like they can for office visits.

I think everyone here has great intentions for our friend Scone.

However keep in mind she is suffering from a very difficult to diagnose condition. There are only a few...I seriously mean a few (count on your hand) facilities in the U.S. that can accurately diagnose the primary problem first, and secondary, any trauma caused by falling second.

I have been in Scone's shoes and it is difficult. No one in the ER, especially on the weekends or holidays is trained for these types of problems. ER is to keep your heart beating and get you on a breathing machine until specialist care arrives--that's it. That's a good and bad point--however with complex problems that answer always is--see your specialist.

Anyone in fear of their health should always see the ER. At this level you WILL NOT see sub-specialist of sub-specialist care. They aren't found at "typical" hospitals. Often it's major care center with specialized docs. Can easily be a 2-6 month waiting time, even on the cancellation list. Treatment is done by someone with an extreme interest and/or is extremely bright.

I know we don't want to see any of us hurt, however this situation is different. I know all of us want Scone to get better--however the ER system is not set up for these type of problems--nor mine.

This is a very, very tough subject that leaves a person in a very tough position. It is an emotional roller-coaster which demands the all the strength and toughness one can muster, plus the ability to cope.

Just wanted to add a few cents to what's going on. New onset pain is an issue--it's a sign of a problem. I'm sure our friend will seek the problem out.

-PF

Hi All,

First of all- thanks for all the replies, advice and good wishes. I do not know how I would survive this situation-both the migraines and fainting-without your support.

I have an appointment with my PCP tomorrow at 10am. If nothing else, he can call the neurologist and say that I need to be seen and he can do bloodwork and possibly order any tests.

I didn't go to the ER for the reasons that PF described. Basically, I just didn't think it would help. There are very few drs here who understand the fainting situation/dysautonomia. In that case, I am the one explaining and begging for help. Plus, as they go with migraines- I am pretty sure they would simply have given fluids, possibly depakan, done a CT and told me to "follow up with the neuro."

These new symptoms are scaring me. They are scaring my roommate and friends. The docs in the ER here are great for normal patients, but not so much for me. I was also wary about going because I feel like I have been brushed aside by one to many drs recently. I just couldn't do it. If, for some reason, my dr can't or won't help, I may result to the ER- just to say that this is serious and needs to be taken seriously.

It appears that the long acting ultram is not the culprit. I stopped it for a few days, but it has not helped- only made the headache worse. I have cut down on the dose of short acting ultram and that helps some. I think this is probably a new symptom of the fainting disorder rather than a response to medication. The one thing that has helped is klonopin and rest. My hands and feet still tingle a bit, but the burning sensation in the hands and feet seems to calm down with the klonopin and some rest.

I made it to church and everything went well.

I will certainly keep you posted.

pain free days,
sconesail

I'm glad you got to church today, I know it was important for you. I'm also so happy you pushed to get an appointment with your PCP.

I hope that you never see my worrying as anything other than concern, and obviously since this is the internet and I am not part of your medical team, you should always trust your best judgement over advice given by anyone on here. Just because someone says they have medical knowledge or schooling doesn't make it true, and you always need to trust yourself over Dr. Interwebs. I know everyone here knows this, but I felt I'd had to 'verbalize' it.

I'm glad the Neurotin is helping with the discomfort, I took it before I got a diagnosis and had my nerve issue surgically corrected, and it helps. If your doctor is open to your suggestions, and you think it might be an option, Lyrica helped me more than Neurotin, and I didn't get as spacey on it.

Please continue keeping us in the loop, and take care. Happy Easter! I'm having a rough weekend head and head cold, so I'm going to keep this short.

Hi All,

Once again, thanks for all of the support and everything. I would never make it through this perilous journey with migraine and this weird fainting disorder-along with the weird symptoms- without the support, advicce, and help of everyone here. Y'all let me know that I am not alone in this fight and you guys have been with me through a lot- through high school, college, migraines, weird fainting disorders everything. The help and support I get here, as well as through good friends and a pretty supportive family, along with faith in God helps me to get through the weird twists and turns of this disease. Believe me, I know that all who posted did so out of love and concern and I love you for it.

I saw my PCP today. I told him what was going on- mainly the unbearable tingling and burning in hands and feet. I was diagnosed with carpal tunnel two years ago- I got it from catching myself with me arms while fainting. He said it was possible for the same thing to happen in the feet, but the only way to confirm this would be with an EMG (nerve conduction test.) He also ran some blood work to check for other causes- B12 deficiency, tyroid, and an A1C. If everything comes back normal- he will have his office set up the EMG with my neuro's office. I am glad that he is checking everything out. He did say it was possible for the constant falling to cause the problem. So, we will know tomorrow and I will pass along the information.

I did make it to church. As always, it was a wonderful service. The highlight for me is watching all the children dressed in thier Easter finery processing barefoot up to the alter with thier mite boxes. (Most children at my church go barefoot until they are about 8 or 10. Years and years ago, a pediatrician who attended our church said that children who went barefoot didn't get as many colds. The mothers embraced the idea- probably because it meant that they didn't have to buy new Sunday shoes every six months and somehow the tradition stuck.)

I am hoping that I will be matched with a service dog in the fall. Apparently, they didn't have quite the right dog for me in the summer class. Either way, I think the dog will help immensely. The teachers at Bear, the elementary school where I have been volunteering have already informed me that my dog will spend some time in kindergarten- helping children read- which is fine by me.

Pain free days,
sconesail

Hi ss,

Haven't talked to you for a while but keep up with your posts. Very disappointed that you aren't progressing with a diagnosis. Perhaps looking further a field may be an answer. Have you ever managed to find anyone else with the same symptoms, perhaps in England or Europe? There may be a specialist outside the US who has a bit more of a handle on your situation. Perhaps back to the google search engine and throw as many pertinant words as you can think of and see if anyone else comes up?

You have a bit more info now than you did a few years ago and with the advances and amount of research now on the net every day now, perhaps something may come up.

And yes I can understand if you are putting your hands out when you fall that you will do damage. Perhaps some wrist strapping may be in order? I can defineately see the potential for sprains if not breakages in the wrists.

Keep your chin up. Marion

Hi All,

I saw my neuro's PA today. She was not very helpful. She basically said that the tingling and burning in my feet could not be from the fainting or any nerve conduction problem. Though, she did not do an EMG. I passed out once during the appointment and she said "that was quick."-meaning that the time I was out was short. After this, she suggested I wear a helmet. She seemed to think that the fainting may be psychological-or at least that I was making up the feet thing. Then she suggested that I should be doing more than I am. Right now, I am doing the best I can- I live indepently with a friend, volunteer at least twice a week, and will probably start tutoring people soon. This may not sound like a lot- but with the migraines and fainting, I think I am doing ok.

I am inclined to believe my PCP who said it was more likely to be something similar to carpal tunnel, but in the feet. When I was diagnosed with carpal tunnel after an EMG, my neuro came in and said "I have never seen anything like it. She has this from falling." So, even through I do not know what this new symptom is. I am certain it is related to the fainting.

The next time, I think I will request to be seen by my neurologist instead of the assistant. The headache is still bad.

So, another symptom, another piece of the puzzle, but not a way to put it together right now.

Pain free days,
sconesail

SS,

So sorry to hear she did not take you seriously. I know that is so frustrating.
There must be some specialist somewhere who will look into the syncope problem
with SpO2 drops accompanying them. It's just crazy. Are you still taking the Ultram?

a PA is not qualified to even begin to review this type of case. this dual MD/PhD terratory.

we can't expect jet fighter performance out of a crop duster. a high end academic/research hospital is the target.

Hi All,

Thanks again for all the support and advice.

Marion- I haven't looked at any specific drs abroad. However, I did find an Italiam medical journal article that explains some of what happens with patients like me. I will have to check it out again.

PF- You are absolutely right. I described the visit to my father on the way home- he had to run an errand for my mother during the appointment- and he said the same thing "She's not even a real doctor." We also discussed the possibility of seeing another headache specialist, but for right now- I will probably stay where I am. He is good with migraines, but not with the fainting or anything that accompanies it.

I see my sleep dr on Monday- he is a neurologist as well. Indeed, when I got my records from him, he wins the prize for best description of my fainting and best history. I will ask him about oxygen as well an oximeter test done during the day to check for O2 drops etc. Don't worry I am bringing back up.

The only thing to do is to keep trying until we figure this out.

Pain free days,
sconesail

I am

I've been having painful tingling in my legs since my last surgery a year ago. I've seen the GP (who is useless) my neuro, who started me on Relpax which made it worse, and my pain doc, who continues to order a sleep medication so that I can sleep through the restlessness. The GP initially wondered if it had to do with the anestetic, which could make sense but should have went away if this was the case. I'm about to have another major surgery and am worrying quite a bit about it getting worse. Fingers crossed.

Hang in there and keep looking for answers!!!!

My husband had a similar pain and tingling in his arm (he said it felt like pins and needles all the time).
It turned out to be a herniated disk in his spine that was compressing those nerves, which is now better after surgery. You could have a similar nerve compression from the surgery. I hope they take a look to see what is causing it. Unfortunately nerve damage is hard to find.

Sometimes I just have to shake my head when I read what we all go through to get decent care.

Hang in there friends!