Reaction to meds?

Wow, that is scary. I don't know much about many of those meds, but perhaps you could ask your pharmacist?  That is what I do when I wonder if the meds are causing problems.

Hi Fire,
Geez that's awful! I've never heard of nexium or flexeril.

Do you have a blood pressure monitor at home? If you do I would take it while sitting down, then take it after standing up... see if there is a great difference. This may help to work out whether the dizziness etc is caused by blood pressure drops or something else.

From my knowledge the dizziness and vertigo are often caused by the histamine receptors in the vestibular system in the inner ear. There are H1, H2 and H3 receptors there on the nuclei (the tiny hairs). Most of this is settled down by an antihistamine regime although they can "collapse" through a quick change in meds and probably a myriad of other things we don't fully understand.
The vestibular system communicates with the cerebellum which governs balance and movement.
Hopefully this will just be temporary for you and pass... if it does not I would see if you could get to a recommeded chiropractic neurologist who will perform all the neurological tests to gauge the level of the vestibular system being out. This is all done without the use of further medications... which is hugely beneficial to people like us who can react crazily to the introduction of new meds.

The cramping and twitching may also be nerve related? Is the cramping accompanied by electric like currents running through the cramping?

I'd certainly want to talk to a professional about what you are experiencing, I agree, pharmacists are much more knowledgeable regarding interactions of drugs and the long term use of certain drugs... how they can impact on the body.

Hope this current predicament for you is brief and pisses off real quick!
Keep us posted. Take care!

I did try tracking my blood pressure.  It was low yesterday for the doctor, 106/67, pretty low for someone my size and being on steroids.  I took it again several times today and it got as high as 146/92 while I was sitting, but it actually went up to 149/127 while I was standing and in the middle of a dizzy spell.  I have also been gitting slightly dizzy while sitting for the last few hours or so, and I have noticed that it it worse when I get up from being on the computer.

According to the pharmacist there is nothing I am on that should cause such severe symptoms, but given that my body does not work correctly anyway it is hard to say if I am experiencing side effects from the meds or if I have something new going on.  I have been on all of these meds for about a month, so I guess it would be unusual to just be getting symptoms now.

Oh yeah, nexium is for acid reflux.  It helps with the heartburn issues from the prednisone and supposedly helps hives, but I have not noticed a difference.  And the flexeril is a muscle relaxer for the cramping.

I did find an interesting site tonight.  http://www.askapatient.com/rateyourmedicine.htm You can compare your side effects from certain meds to side effects other patients are having and not just what the paper from the pharmacy says are the possible side effects.  I did find some comparisons to what I am going through with other people on the same meds, but not enough to make me stand up and say that's it.  I guess I will just have to go thhrough a process of elimination on them. 

My blood pressure is normally on the low side, so I sometimes feel light-headed, however since I had that shock a few weeks ago my dizziness has increased dramatically - to the point that I sometimes need to walk near a wall in a shopping centre in case I fall over. Does your head feel foggy as well?  This apparently is a common effect with masto and it's really difficult to clear up. My GPs did all sorts of tests for the dizzies which ruled out stroke, vertigo, inner & middle ear problems and any damage to major blood vessels. My blood pressure also rises slightly when I stand up.

According to Drs Bleasel & Nichols, aspirin has proved successful in clearing the fogginess and settling the dizzies, HOWEVER aspirin is a killer for me & I wouldn't suggest taking it without first talking to your Dr. Aspirin gave me incredible stomach cramps, vomiting,

diarrhoea, fever .....  laid me out for almost 6 weeks, so be careful. I'm waiting to go through an aspirin desensitisation program which hopefully will allow me to take aspirin to get rid of foggy brain & dizzies - big risk, but worth it if it works.

 

Thankfully I don't get the cramps & twitches as you'd described. Does this only happen while you are sleeping, or through the day as well? I sure hope they are very temporary for you - keep smiling.

 

I do get the head fog too, and there are times the dizziness comes on so bad and quick I better have a wall to lean on.  I have also been scooting down the stairs just to be on the safe side.  The last thing I need right now is a bad fall when I have osteoperosis from the steroids. 

Aspirin is a huge no no for me.  One or two will have me covered in hives and usually with angio.  All NSAIDS seem to do the same to me.  The doc had me change the Doxepin to 25 mg and I did fell OK this morning until about 2 hours after I took my prednisone and ate.  My husband is a diabetic and urged me to check my sugar, and sure enough - 233.  I have never had high sugar before, but I cannot say I am too surprised since I have been on steroids for so long.  I have avoided carbs and sugar all day and it has dropped to 152, but that is still high for me.  So now I get to call the doc in the morning and go though more tests *groan*. 

the leg cramping is constant, which can be a sign of high blood sugar as well.  I was actually off of all medications for over 3 months before this outbreak started in mid August, and for some reason it is so different this time than normal.  Much more severe, and I am not reacting to many of the things that used to help.  for the first time since all of this started 13 years ago I am actually scared of what may happen.

I don't know much about Prednisone so I've been reading a few comments from users on other medical sites.  It appears that it has been the cause of rapid increases in sugar levels in many people. I also read that some users experienced severe muscle twitching and pain. Dizziness was also a common side effect. I know that every med has side effects and they vary between users, but is it worth pursuing this in greater detail with your Drs?  One person who spoke about the sugar levels and muscle twitching had been taking Prednisone for just 2 months.

Same for me with aspirin... in fact that was the med that induced my first full blown anaphylaxis.

Apparently what you've described can happen when one goes off all meds then reintroduces them, as the body is forever changing and trying to find an equilibrium... which in our cases it's always on the run...so to speak.
How is your diet Fire? In regards to triggers?
I've forgotten whether you've mentioned before that you cannot take most antihistamines.. aside from the Doxepin?

I feel as though I need to mention again that the antihistamines work on the vestibular system in the inner ear and with a thorough neurological examination they will be able to determine if the dizziness, spatial disoreintation and vertigo is due to this. It's a matter of elimination to try to track the source. I don't mean just basic neurological examinations some of the immunologists attempt to do... they are too basic.

With you sugar being so high that could explain alot of what you are experiencing or adding to your experience. Can you take electolytes? If you've had diahorrea and also just the usual GI stuff that goes along with MC disorders maybe you are low on electrolytes that are adding to the cramping? Just a thought.

(((((((Big hugs to you)))))))... you will be okay you're just going through a terrible time with it at the moment. Hopefully speaking with the doc tomorrow will be useful and the tests may show something, then they and you can work out a new plan of action.

P.S. Suen, I met a mother and daughter at RMH whom I met through TMS. The daughter has mastocytosis, even though they won't give her a definitive diagnosis even though SM has been detected through BMB (work that out?!!) but she has gone through the desensitisation of aspirin and it's helping her to some degree. From my little knowledge about aspirin it is usually only benificial if prostaglandin D is high then aspirin therapy is very useful. So hopefully it will be of benefit to you also. By the way have they tested for prostaglandins?

I had a fasting glucose done and I came back normal, and my sugar has gone back to normal along with the blood pressure.  The only things I changed was the doxepin, I cut down to 25mg at night and I did not drink any coffee yesterday.  The cramping is pretty much gone, but I am still having a lot of twitching - I can deal with that though, I doesn't hurt at least.  I only had one dizzy spell yesterday.  The doc suspects it was a combination of the coffee being a diuretic (sp?)  and too much doxepin since she has another CU patient that had the same thing happen. She also mentioned that my kidneys are dumping too much protien, something we will have to keep an eye on.  FYI, the doc said you can tell when your kidneys are dumping too much protien if you have a lot of bubbles or foaming when you urinate - thought that was interesting.  I miss my coffee already though.

I've been testing positive for protein in my urine since April.  (I didn't notice the bubbles until I peed into a cup... it's not enough protein to make the toilet foamy).  The good news is that I did a 24-hour urine collection and my total protein was 175mg... something to watch, but nothing to worry about! :)  I've read that histamine can cause your body to deposit complement in places like your brain, blood vessels, and kidneys causing problems like chronic kidney disease, vasculitis, migraines, etc...  If it's turning into a serious problem your complement levels will probably fall below normal.

Chronic kidney disease is nothing to mess around with though... I would ask to have a few more tests.  It might also explain why your body is having such a strong reaction to your medications... maybe your kidneys are not flushing the chemicals out of your body as quickly as a "normal" person.

The doc is staying on top of it.  Blood work once a week until we are confident I am through it.  She is a little worried I may be having some issues with my adrenal glands since I went 3 months with no steroids and all of a sudden was on 180mg a day. 

I did a 72 hour fast in hospital a couple of months ago to rule out Addison's Disease which has to do with the production of cortisol from the adrenal glands. It's a very rare condition....glad to say I don't have that.
Apparently it's a highly controversial test, in fact the Mayo clinic are the ones who developed it to detect Addison's. My doc had to read up on it first as well as the whole ward staff before they started me on it.
I'm sure there are other ways to detect adrenal gland function that is not so taxing on the body... as it's pretty harsh and of course must be performed under medical supervision. I'm glad I had it done as it's VERY specific.
Great you're getting weekly blood tests Fire to keep check on it all.